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Recovery Stories
These pages are new as of June 2009. Keep stopping back as the community logs more information.
Dirk Johnson Huntington Beach, CA |
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Skye |
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After Treatment |
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| Child's Symptoms: |
Non-verbal, a-lot of stimming; high fevers after vaccines, no eye contact or want to socialize, little to none of this attention. Very aggressive to his brother. |
| Formal Diagnosis: |
MR PDD |
| Cause: |
vaccinations he had severs reactions to most all of them his charts show his head size go from 50%-80% after first DTAP round than go back to 50% at 24m -brain damage? I thought heads were not supposed to swell,but I am no dr. |
| Helpful Therapies: |
GF/mostly CF diet, all natural bio-medicines (pro-biotic, fish oil, mineral salts), ABA home therapies (no longer needs) , currently at school since 3 years old at 32 hours a week, above all LOVE and positive knowing my child may have autism but would not be autistic. |
I would like to tell
Doctors ... |
they hearyou justfine and understand you clearly, their muscles are sore and guts in pain so it is hard to react in those conditions, diet is key do advise do not doubt it for any. kids do actually recover I made so 1st hand believers from our ABA at home service. |
I would like to tell other
families ... |
early intervention is the key, call your local regional center 1st, then get probiotic and GFCF diet both are purchased at your local markets. love your kids and understand they suffer major injuries and pain. but most 80% +hopefully will recover as Skye has. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Cynthia Turnpaugh peru, IN |
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| Cause: |
I have no idea that's why I continue to keep up on the research of Autism it is very important. |
I would like to tell
Doctors ... |
Keep up the good work it takes a lot of patience and time but is well worth it. |
I would like to tell other
families ... |
Never give up hope and be thankful for what you do have things could always be worse. |
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Diana C Cordero Orlando, FL |
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| Cause: |
In my son's case it was different than most cases I have heard. Christian was very delayed as an infant. He crawled late, sat up late, stood up late, grew in his first teeth at a year old, and walked at 15 months. He didnt begin to speak his first word until 28 months. With all the therapies he has received and still receives, he has made such an improvement. He can speak in phrases now. He can count to 100. He learned his alphabet, numbers, colors and shapes at 2 years and a half. He loves to sing and can sing various songs he has learned from school and at home. |
I would like to tell
Doctors ... |
To be more educated when it comes to autistic children and be more comprehensive and understanding. |
I would like to tell other
families ... |
Once you notice the symptoms...early intervention is very important to help with your child's progress. |
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Cindy Davis Leesburg, VA |
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Alex |
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After Treatment |
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| Child's Symptoms: |
Constipation, loss of eye contact, hyperlexia, stimming by running around in circles, sensory dysfunction, yeast overgrowth, heavy metal overload, lack of social skills, very literal with conversation, auditory processing delays, difficulty inferring, eye tic (Tourette's)and major speech delay at age 3, and low muscle tone. |
| Formal Diagnosis: |
Moderate Autism, eye tic, auditory processing disorder |
| Cause: |
Genetic defect on MHTFR gene, HHV-6, MMR vaccine at 18 months old caused asthma attack |
| Helpful Therapies: |
GF/CF Diet (a lot of fruits, vegetables and protein. Alex had an IGG and IGE performed and he is allergic to eggs, corn, and sensitive to gluten and casein, also mushrooms, brewer's yeast, lemon.), Chelation (Epsom Salt baths, Malic Acid/Magnesium Malate, Alpha Lipoic Acid, Rectal suppository of DMSA/Glutathione 3 days on/11 days off), Supplements (lutathione cream, Vitamin D-3, Calcium with Vit D, DMG, Selenium, Lithium cream, MinerAll, Spectrum Complete Multivitamin, Probiotic, Cod Liver Oil, Carnitor, L-Carnosine, Detox-Aid, PhosChol, B6, B12, Folic Acids), Other biomedical (Deplin, Diflucan, Nystatin, natural remedies like Grapefruit Seed Extract, and Brainchild Nutritionals Yeast Killer Package, HHV-6 was treated with Valtrex), OT/sensory integration, ABA/VB, speech therapy, social skills group, reading comprehension tutoring. I am a Physical Therapist so I worked on his motor planning and hypotonia. |
I would like to tell
Doctors ... |
Thank you for believing us moms and dads, my family appreciates your dedication, hard work, and countless hours seeing children around the world and healing them. I thank Dr. Andrew Wakefield for sacrificing his country for our kids and I was honored to hug him at this year's DAN! Conference. |
I would like to tell other
families ... |
There is hope! I am a valuable resource in the Northern VA area and I am here to help you on your road to recovery! |
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Contact this Rescue Angel |
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Jessica LaMonde Dayton, OH |
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| Child's Symptoms: |
Significant delays in verbal & non verbal skills at 19 months: loss of vocabulary, fleeting eye contact, repetitive language/ echolalia, stereotyped behaviors: hand flapping, toe walking, ritualistic behaviors such as spinning objects, making patterns, lining up toys. Seemingly deaf to his name, but could always hear the train coming from a distance and would stop what he was doing to go over to the door to watch for it. Inappropriate affection to strangers, sensory processing disorder, chronic diarrhea/leaky gut. |
| Formal Diagnosis: |
Pervasive Developmental Disorder Not Otherwise Specified. |
| Cause: |
An overload of heavy metals and contaminates in his body ie, too many immunizations! |
| Helpful Therapies: |
Detoxification (Organic Foods, taking all toxins out his diet), Nutritional (Diet: GF/CF, completely organic food), Supplements: Minerals, Amino Acids, Cod Oil) & Biomedical Intervention: DAN! Protocol, Behavioral & Developmental Therapies such as Applied Behavioral Analysis, Speech & Language, Occupational Therapies. I incorporated all of those therapies plus basic therapies like music or play therapies into everyday life and Marcel made significant progress to the point of recovery. |
I would like to tell
Doctors ... |
Stop prescribing drugs and get to the root of the problem by healing children from the inside out through nutritional & biomedical intervention. To the doctors who already do that - GOOD FOR YOU! Heal children from the inside out and treat the symptoms through developmental & behavioral therapies. |
I would like to tell other
families ... |
Recovery IS possible !!!
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Deborah Wall St Thomas, Ontario Canada |
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Michael |
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With Autism |
After Treatment |
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| Child's Symptoms: |
Severe and violent tantrums, rigid repetetive behaviour, echaholia, poor eye contact, sensitive hearing, incesant humming, very poor sleep, self harming behaviours, poor coordination, chronic middle ear infections, hayfever, asthma. |
| Formal Diagnosis: |
High functioning Autism |
| Cause: |
Genetic predisposition coupled with exposure to environmental trigger which exasperated it. By which I mean that he was always an intense child, but he got sick after the MMR with ill health and dramatic behavioural changes to follow. |
| Helpful Therapies: |
Diet modifications and substituting conventional medicines with Homeopathy. No antibiotics in 7 years. |
| What Happened? |
We saw improvement within days. He started being more responsive and sleeping more and screaming less. He did however have awful runny poo for around 2 weeks and tried to get to wheat crackers etc every time our back was turned, so we had to clear the house out of Gluten and Milk. He gradually became more content and happy and healthy but improvements continued for months. The hearing aids that had been made up were never fitted because when we went to have it done, there was no fluid in his ears anymore. He has not had a middle ear infection, a bloated tummy or any asthma symptoms since being on the diet. |
I would like to tell
Doctors ... |
Just because it is not proven doesn't make it ineffective. Don't put parents off the diet by saying it is complicated, inconvenient and antisocial because I think you will find that you just described Autism. Get real about vacines and admit to concerned parents that the scary measles statistics in the leaflets were taken from third world communities and do not force their hand. Mother knows best and her instincts should never be taken lightly. |
I would like to tell other
families ... |
DIET, DIET, DIET, it is not that hard and it is in fact a gift to the whole family to try new foods and cook more. Most of the stuff you will avoid is bad for you anyway. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Claudia El Paso, TX |
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Julien |
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| Before Autism |
With Autism |
After Treatment |
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| Child's Symptoms: |
Profound speech delay, moderate-severe fine/gross motor skills delay, sensory issues, reflux, eczema, aggressive behaviors, mild self injury, sleep disturbances, poor social interactions with peers, poor eye contact, perseveration, severe tantrums, and lost interest in toys. |
| Formal Diagnosis: |
His formal diagnosis is PDD-NOS, as per his developmental pediatrician. When we were first referred to Early Childhood Intervention, he was diagnosed as having speech delay and developmental delay. |
| Cause: |
After his 15 month vaccine, my son who was developing in a mostly typical manner lost all his motor/speech skills. I believe that my son was born with a genetic predisposition that made him extra vulnerable to environmental triggers like trace toxins in a routine vaccine. |
| Helpful Therapies: |
CF diet, epsom salt baths, Nordic Naturals Children's DHA capsules, Folinic Acid w/ B12, ABA (Verbal Behavior method), speech stimulation exercises, and LOTS OF LOVE |
| What Happened? |
I think my son is well on his way to being recovered. My son started getting therapy and early intervention, on January 9th. We had a behavior analyst, a speech stimulation teacher, and an occupational therapist. He no longer needs an occupational therapist, and we have traded in our behavior analyst for an ABA consultant. ABA is a very intense education based therapy, but it gets results. She is basically training me to be his 'teacher'.
The good news: My son is currently speaking in short sentences. He has use of around 50+ words. He is beginning to ask questions, follows simple instructions, and is eloping far less than usual. He is no longer aggressive, and plays well with other children. He will seek out other children to play with. He imitates, has age appropriate creative play, age appropriate dramatic play, he is loving and affectionate. His eye contact is near perfect, most of the time. He has a regular bedtime, and sleeps through the night. He wakes at the same time every morning. The tantrums are a rare occurance, these days. He plays with toys by himself, and will babble while playing. He initiates play, affection, and social interactions. The sensory issues are all resolved, the eczema is a rare occurence, and there is no longer any kind of self injury. At this point, I am expecting my son to make a full recovery and shed his diagnosis - at some point.
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I would like to tell
Doctors ... |
I would like doctors to be open-minded and remember that our children need them to be on our team. In 20 years, mainstream medicine will be hitting themselves over their heads for not having embraced biomedical sooner. The doctors who truly want to help, will need to take that leap of faith. An army of mother warriors are right about having found treatments that work. |
I would like to tell other
families ... |
I would like other families to know that Autism is treatable, reversible, and in some cases curable. There is hope for any child, no matter how severely afflicted. All children, with intensive biomedical protocols, can improve and enjoy a better quality of life. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Kelly McCray Montpelier, VA |
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Matthew |
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| Before Autism |
With Autism |
After Treatment |
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| Child's Symptoms: |
Regression at 15 months: loss of speech, reduced eye contact, irritability, reflux, bowel issues, sensory processing disorder, regression in eating, sleep disturbances, chronic ear infections, frequent fevers |
| Formal Diagnosis: |
autism |
| Cause: |
I do think he had a genetic predisposition for autism based on family history of autoimmune problems, but I think environment is the main culprit in our case. I think his immune system was overloaded by the introduction of many new foods into his diet at 12 months. I think his toxic load was increased when we moved into a brand new home with the exposure to paints, carpets,pesticides, etc. I think that the vaccines he received at his 12 month and 15 month well visit pulled the trigger that caused his overwhelmed immune system to go crazy and he shut down. |
| Helpful Therapies: |
Yeast eradication, M-B12, speech, removal of dairy, all of the supplements. |
| What Happened? |
Matt regressed immediately after his 15 month "well visit" where he received several vaccines. It took 6 months for a diagnosis, but we immediatley went to work on bringing him back. He started speech, occupational, and early intervention therapies. Matt started sleeping through the night 1 week after removing dairy from his diet. 3 Months later we removed gluten and he started to speak again for the first time in over a year! 2 months after that we saw our DAN doc and started yeast eradication, M-B12 injections, and numerous supplements individualized to Matt's needs. He started to thrive! We eventually were able to reintroduce gluten with moderate success while dairy is still a major problem so we avoid it whenever possible. In an effort to maintain his balance, we have now removed soy from the diet as well. He is almost five, and has been dismissed from occupational & speech therapy. He is going to pre-K this fall and is described as "slow to warm up" but otherwise indistinguishable from his peers. We are so thankful for our blessings in his recovery! |
I would like to tell
Doctors ... |
Just because some of these kids cannot speak does not mean that cannot understand language! From my experience, this is one of the biggest misconceptions doctors have. Please do not talk about these kids like they are not "there." They are present and they know what you are saying. For typical pediatricians, I beg them to get educated on the successful treatments that are helping families like ours. Support our decisions and don't let "scienctific study" overrule the reality of what parents are telling you. |
I would like to tell other
families ... |
Never, ever, ever, ever, ever, ever give up! Keep individualizing treatments and find the right protocol that works for your child. Every child has the potential for greatness, it is our responsibility as parents to help them achieve that potential. |
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Contact this Rescue Angel |
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Laurie Goetz Wauwatosa, WI |
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David |
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After Treatment |
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| Child's Symptoms: |
Regression after a vaccination. No language, hand flapping, standing on toes, fixation on spinning objects, no ability to point to anything, did not understand "yes" or "no," circles under eyes, insomnia, hyperactivity, restless leg syndrome, tantrums, severely self-limited what he would eat. |
| Formal Diagnosis: |
David was diagnosed by three separate Doctors as a prerequisite for beginning Lovaas treatment as a research participant. He was diagnosed as moderately Autistic because he had some play skills even though he had no language. |
| Cause: |
It seems to be partly heredity, since family members are on the spectrum, and partly a strong reaction to the MMR vaccine, accompanied by an exposure to lead in his home at the time. The improvement from the removal of gluten and casein in his diet might mean a GI issue similar to celiac. |
| Helpful Therapies: |
GF/CF diet.
Vitamins (DMG, B6, Magnesium, B12, Cod liver Oil, Vitamin D, Pro-biotics, calcium, evening primrose oil, octocosonol, zinc, selenium).
Eliminating soda, no trans-fats, no artificial flavorings, no preservatives, no artificial colorings, no high-fructose corn syrup. Got rid of aluminum pots and cook with cast iron.
Using all organic foods. (No pesticides.)
(Planting a garden.)
Treatment for Candida (Nystatin, yeast-free diet)
Minimizing further vaccinations, (checking for mercury-free, spreading them out a year between each one, only one vaccination type at a time,)
Epsom Salts baths,
Melatonin for sleep,
Auditory Integration therapy,
Sensory Integration Therapy (brushing, pressure,)
Hippo therapy (horseback riding,) behavior modification therapy (Lovaas).
Homeopathics.
Filtering water, HEPA air filter. |
| What Happened? |
David is 15 and we started when he was 3 1/2. We began with vitamin B6, and Magnesium. We started behavior modification therapy the same year. We used the therapy notes to determine if the biological treatments were effective. I found the information on the DAN website since there were no Doctors in the area that I could find who understood biological treatments. I would do one thing at a time, not telling anyone. After a month, another thing was added, and each introduction was followed by noticing if there were improvements in his therapy or school notes. The GF/CF diet has really helped and is worth a significant effort to be done correctly. His teacher at school is very important in helping him to follow his diet. He currently makes his own lunch at school. His grades have improved, his behavior is almost normal now. He has friends, and does almost anything a regular kid does. He is currently still learning to ride a bike, though. He requires some help at school. |
I would like to tell
Doctors ... |
Listen to parents' instincts. Ask questions, be open to what they are learning and trying, do your own research, keep notes on the alternative treatments on a case-by-case basis. Get involved. Make referrals so parents aren't inadvertently isolated. |
I would like to tell other
families ... |
Don't dismiss a treatment out-of-hand that might seem different. Learn from other parents. Get several recommendations first before trying anything. Do the least invasive treatments first. Never do anything that would hurt the child or cause permanent damage. Don't let guilt interfere with your decisions. Start early, research everything. Take notes. Write everything down. Take pictures. Observe changes.
Take the child out into the world, enjoy the child you have while working to help him/her to be healthy and happy. Don't be shy to rely on friends and family for help.
Go to conferences. Learn as much as you can.
Check for spoiled/rancid vitamins. Get good quality independently checked vitamins. Read labels!
You are not alone. |
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Contact this Rescue Angel |
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Kay Vincent Lovettsville, VA |
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| Child's Symptoms: |
PDD-NOS, Sensory Integration Disorder, Failure to Thrive, Febrile seizures, autoimmune disorder, Head Banging, Not talking, Refusing to eat, Gets sick all the time and the illnesses last for a longer peroid of time. |
| Formal Diagnosis: |
PDD-NOS, Failure-to-Thrive, Febrile seizures, Autoimmune Disorder, Sensory-Integration Disorder |
| Cause: |
Definately the vaccines did not help him, I did see him regress after the DTaP shots and I think the MMR finished his gut off! |
| Helpful Therapies: |
Biomedical: CF diet, Supplements (including but not limited to)- Vitamin D3 drops, Vitamin C, Zinc, magnesium, probiotics, GABA, TMG with Folinic Acid and B12 and a Reduced Glutatione lotion. Speech therapy, Occupational therapy and ABA. |
| What Happened? |
He is able to carry on conversations now, he looks you in the eye, he tries to participate in so much more verses just watching everyone else play. He attends a typical first grade, he does have pull-outs for reading because he speech was delayed, he couldn't tell you the sounds of letters, but he is reading everything now!! He even reads signs in the car!! |
I would like to tell
Doctors ... |
Thank you for your hard work, please keep it up and don't forget to listen to the parents, we have experienced it first hand 24/7 with our child and don't dismiss anything we have to say even if it's trivial. |
I would like to tell other
families ... |
There is help out there, don't give up, if something doesn't work try something else. Try, Try, Try, no one else can do it you have to help your child. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Kathy Johnson Dallas, TX |
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Ethan Barrett |
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| Before Autism |
With Autism |
After Treatment |
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| Child's Symptoms: |
Major GI issues, had colonoscopy with inflamation in lower/upper GI, food allergies, yeast problems, chronic ear infections, sensory problems, eating & sleeping difficulties, OCD, delayed speech, blank stares, no social interest in other children, anxiety, and frequent tantrums, sometimes head banging. |
| Formal Diagnosis: |
PDD-NOS at age 3 |
| Cause: |
Vaccinations |
| Helpful Therapies: |
IV CHELATION is why Ethan lost his diagnosis, this was the winner for us. Each child is different just move on if a treatment does not work, and go to the next one. It can be discouraging but sometimes you have to go through what does not work to get to what does. Don't give up. |
| What Happened? |
Started treating him biochemically in 2004, did numerous therapies, multiple vitamins, secritin tx, hybaric O2 machine, speech and physical therapy, the list goes on. It was not til we did IV chelation in beginning of 2006 for 10 months getting injection every 2 weeks that my child came out of his fog. The color returned to his face, he was able to have conversations with us, show emotions and became like his peers. He is not even on the spectrum anymore, he does have ADHD but that is nothing compared to the utter hell we went through for a few yrs there. |
I would like to tell
Doctors ... |
God bless you, you are truly restoring life the way God intended before these kids were damaged. |
I would like to tell other
families ... |
These children can recover, don't give up it takes time but well worth it. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Cindy Halim Fairfax, VA |
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After Treatment |
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| Child's Symptoms: |
Lack of eye contact, lack of/delayed speech, repetitive behavior, tantrums, sensory integration issues, difficulties with transitions, issues with coping in large and unstructured environments, impulsiveness, hitting, yelling, kicking. |
| Formal Diagnosis: |
ADHD, High Functioning Autism, and the doctors said in the beginning... "nothing wrong with him" |
| Cause: |
Vaccinations, environmental toxins, poor "regular" diet, weak immune system and methylation. |
| Helpful Therapies: |
GFCF diet, organic diet, Feingold diet, low carbohydrate diet, antifungals, digestive enzymes, vitamins and supplements, epsom salt baths, methyl B-12. |
I would like to tell
Doctors ... |
Please listen to parents. If you don't know the answer, please don't make lame excuses saying "oh it's normal" Please send them somewhere else. Please do the homework to do research apart from the 10 minute time you spend with them in the office. This is THEIR LIFE, even though it is only YOUR TEN MINUTES. Educate yourselves and keep yourselves updated on the latest challenges families are having. Take the time to learn NEW things. DON'T rely on medications. DO NO HARM. God created our bodies to function on its own. Fix what is broken and replace what is missing instead.
LEARN. |
I would like to tell other
families ... |
There is hope. Every child is different. Don't try something because it worked for someone else. As parents we need to educate ourselves so that when we decide to try a treatment it's because we KNOW it is what they need, not because it worked for others. But you are not alone. We can help you get there and hold your hand every step of the way. YOU will recover your child, and we will show you how. |
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Contact this Rescue Angel |
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Deborah A Delp Carlisle, PA |
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JR (a.k.a. Rodney) |
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| Before Autism |
With Autism |
After Treatment |
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| Child's Symptoms: |
Toe-walking, lose of language, meltdowns, aggressions, pica, squealing, yelling, |
| Formal Diagnosis: |
Autism, Mental Retardation and ADHD |
| Cause: |
Genetic predisposition, environmental toxins and the entire vaccine program. I do NOT believe greening vaccines are going to make them any safer. The way vaccines are made makes them dangerous. I am totally AGAINST vaccines now. |
| Helpful Therapies: |
Bio-medical (supplements), ABA CLM (competent learner model), deep pressure. |
| What Happened? |
To begin, JR is not recovered yet. However, that being said the improvements made since beginning bio-medical treatments, his educational placement and the aging process have taken him from severely autistic to mildly autistic. This is based on the C.A.R.S. evaluation system. |
I would like to tell
Doctors ... |
Open your minds and close your mouths. Pay attention to the parents and what they are saying to you and don't blow off parental concerns. Open your mind to alternative treatments that work. When parents tell you what is working listen. When a child is recovered except it and stop saying they never had autism to begin with!!! |
I would like to tell other
families ... |
Have HOPE....never give up and do your own research. NEVER EVER take the word of any doctor about anything. Always investigate EVERYTHING before beginning treatments. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Annmarie Brogan Poland, OH |
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| Cause: |
The toxins in our vaccines and enviroment. |
| What Happened? |
We are not 100% recovered...yet! However, he truly has come so far! Colin went from being constantly sick to 2 minor colds this past year. He has lost the diarhea and now has 2 normal bowel movements a day(and he was potty trained at age 3!)He no longer flaps and spins. He can tell me what he wants verbally and follow 2 step commands. He went from kicking and screaming the whole day at school to sitting and participating, raising his hand and answering questions -he is learning!
No he is not 100% recovered yet but he has come so far! The best part of all of this is that he is truly a happy little guy now. |
I would like to tell
Doctors ... |
THINK OUTSIDE THE BOX! |
I would like to tell other
families ... |
You have to find out what is truly going on with your child - it is not normal for them to be sick all the time or to have chronic diarhea or constipation. Once you treat the underlying cause your child can then begin to learn and develop properly. Don't look for band-aids look for real solutions! |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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H. Downing Whitehouse Station, NJ |
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| Child's Symptoms: |
severe hypotonia, dysgraphia, dyscalculia, CAPD, perseverative behavior, echolalia |
| Formal Diagnosis: |
PDD-NOS |
| Cause: |
vaccines |
| Helpful Therapies: |
mb-12 shots; hyperbaric oxygen treatment in hard chamber; supplements |
I would like to tell other
families ... |
keep trying safe therapies/supplements until you find what works |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Holly Riley Glendale, CA
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| Child's Symptoms: |
No words, no pointing, stereotypical behaviors (lining up and spinning toys), eczema, GI problems (diarreah and constipation), food sensitivities, immune dysfunction, ear infections, motor delays, sensory integration dysfunction |
| Formal Diagnosis: |
Mild/Moderate Autism, May 2005 |
| Cause: |
Environmental toxins including vaccines, dietary toxins and lead poisoning. |
| Helpful Therapies: |
Dietary interventions, mild HBOT, Methyl B12 injections, chelation, anti-fungal therapies, anti-viral therapies, supplementing vitamins, minerals and EFAs |
| What Happened? |
Our Journey in Autism
April 2009
It’s been four years now since I first found stories of recovery on the Generation Rescue website. As I read the testimonials on the internet, I wept. Those tears were an overflowing of my hope for my son, Quinn, and all children and families with autism. The stories confirmed for me what I knew in my heart: my son will recover from autism.
We’re almost there. Here’s a bit of our story. We share our story in hopes that it will help other families.
Quinn was diagnosed with autism right after his second birthday. At his 18 month check up he was not speaking at all, and his pediatrician asked me a lot about it. I was concerned, but convinced that it was because he was getting so much Spanish. Children who are exposed to bilingual environments often have slight speech delays, but when they speak they are able to speak both languages fluently. What I didn’t realize is that he didn’t have any receptive language either. He couldn’t respond to “touch your tummy!” or even really play peek-a-boo. Anyway, at 18 months we left the doctor’s office and I had convinced myself and the doctor that we should wait and see—if he wasn’t talking by his birthday, we’d have him assessed for a speech delay. I left with no information about autism or developmental delays at all. He could have been diagnosed at 18 months if only I had known more about autism.
But I didn’t. So he continued to fade away from us. He was sensitive and covered his ears a lot, he retreated into self-stimulatory behavior whenever he could, and he was lost in his own world. It’s so subtle when you don’t know what to look for, isn’t it? A few days before his second birthday, he was still not talking. No words at all. No eye contact at all. No imitation at all. But he was an easy baby, and had very few tantrums. He could entertain himself (i.e. stim on spinning anything and everything) for hours. He was an eloper, and he was oblivious to his peers, but he was generally happy. He was a gentle, sweet baby, and we didn’t realize how lost he was.
I went to the book store to look into speech delays, and on a whim, I picked up a book about autism. After reading the first few pages, I knew. I bypassed the doctor and went right to the State Department of Education and referred him myself for the evaluation for autism. Within three long months, he was diagnosed and early intervention services began.
Food. I have learned that food is medicine or food is poison, and there’s not much in between. He lived on cereal, wheat toast, fruit and milk. I remember being so excited when he finally showed some interest in pizza because he was broadening his food options. He could drink over 50 ounces of milk a day! As we researched autism, we found some websites that claimed that wheat and dairy could be contributing to the disorder.
We stopped cow’s milk and replaced it with rice milk. Taking Quinn off of milk made a huge difference within only a few days—it was like he came out of a fog. He was more social and engaging than he’d ever been. He seemed happier. He started bringing toys to us to play for the first time ever. So our journey into biomedical interventions began. We soon changed his diet to be Gluten-Free/Casein-Free and he continued to improve, though we made the mistake of replacing most of it with rice, so a year later his IGG test for rice was very reactive. After that test, we started a rotation diet and bought a bread machine. I invented four different bread recipes that were not only GF/CF but also free of soy, potato, corn, egg, and all of his 30+ food sensitivities. Believe it or not, we even managed to take a 3 week road trip after starting this crazy rotation diet with home-made bread (we froze the bread and bought a refrigerator for the car, and even brought everything we needed to bake bread on the road). After a year of rotating the home-made bread, labs still show big gut issues, and we cut out all bread, starches and sugars and started the Specific Carbohydrate Diet (SCD). The whole family went on the diet with good results. I cook from scratch like my grandmothers used to . We were on SCD hard core for about 6 months and have gradually eased back into the GF/CF diet. Our current diet includes select gluten free starches in moderation.
For Quinn, traditional therapies have helped a lot. The traditional therapies include play therapy, behavioral therapy (Applied Behavioral Analysis using Discrete Trial Training then Natural Environment Training), Speech Therapy, Occupational Therapy and a social skills group. These therapies have been intensive totaling 30-45 hours per week, and he has always had additional inclusive experiences with typical peers including Music Together and dance classes. Quinn began preschool at age 2 ½ in a typical preschool with the support of his ABA therapists as his inclusion classroom aide. By the time he was finishing preschool, we were able to fade the 1:1 support completely. He entered kindergarten in our private Catholic School without an aide, and he has had a wonderful year. As we are fading his ABA therapy, we are now using Relationship Development Intervention objectives to fine tune his social communication skills.
Biomedical therapies have included vitamin, mineral and essential fatty acid supplementation. We have used anti-viral medication along with anti-fungal medications. We have treated bacterial infections in his gut, and we have used several different chelating agents to remove toxic metals. We saw huge gains in his speech mild HBOT (hyperbaric oxygen therapy) which we have done two rounds of (40+ dives each round). Increasing the frequency of his methyl B-12 injections (now given daily) also helped his speech tremendously.
Here’s the some data on his progress:
At Quinn’s initial assessment, they used a variety of tests including the CARS (Child Autism Rating Scale) at age 2 years, 2 months. His score was 36, and he fell in the “Mildly-Moderately Autistic” range. Nine months later, a second psychologist gave him a score of 37 on the CARS confirming his diagnosis and need for intensive therapies to continue.
After a year and a half of intensive therapies of all kinds, at age 3 years, 8 months, his score on the CARS was 27, which actually fell in the “Non-Autistic” range. Four months later his score had again dropped to 21, another significant move in the right direction on the autism scale and far from the Autistic range. Four months after that, the CARS score was 19 (the minimum score for a typical child is 15, so dropping just a few points is still significant). While these scores do not mean that Quinn no longer has autism, they are certainly further documentation of the giant gains he has made.
In one year and a few weeks time, his speech has jumped from an age equivalent of 2 years 6 months to the age equivalent of 5 years 2 months (that’s a 32 month gain in 12 months time, and, by the way, his age at the time of that assessment was only 4 years 9 months!).
Quinn has gone from a two year old with NO receptive or expressive language at all to a kid who understands EVERYTHING and can follow multi-step directions (i.e. “Go get your shoes from the garage, put them on and get in the car. It’s time to go!”). He is having conversations with his peers and expressing his wants and needs in complete sentences. He sings spontaneously, inventing songs and singing his favorites with his sister. He has taken a community preschool Spanish class and uses Spanish frequently and appropriately in his play and interactions. His imaginary play is phenomenal! His eye contact is great, and he is doing a lot of social referencing with us and his peers. Most people are shocked when I tell them that he has autism, including professional therapists who don’t know him. He is still a gentle, sweet boy, but now he’s able to interact with us and experience our world.
Some people would say that his recovering is a miracle. Perhaps it is because we would not be here without my deep faith that he would get better. But, the truth is, this miracle is the result of a lot of work. Mixing supplements and medicine and then giving him the doses every few hours. Figuring out what he can eat and shopping for it, preparing it, adapting and inventing recipes, baking and cooking. Orchestrating the insane schedule of therapies around the rest of the family and actually getting him there, on time, several times a day. Learning, going to workshops and support groups, researching on the internet, reading books, documenting his progress and working with his doctor and therapists to adjust his intensive therapies. Letting the housework go. Investing in our son’s future by spending a small fortune to help him heal. Nurturing our marriage. Finding time for myself (occasionally). Educating family, friends and strangers about what we’re doing and why.
We are living a dream. Every day Quinn amazes me, and I am thrilled to say that he is a happy kid living a full life.
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I would like to tell
Doctors ... |
THANK YOU! |
I would like to tell other
families ... |
Hang in there! When you don't see the changes you're hoping for, don't give up! Change strategies, diet, supplements, doctors, therapies, etc. Be relentless, go to conferences or learn online (www.autism.com has videos of DAN! conferences). Keep visualizing the future you want for your child and your family. There is always hope. Believe in yourself and your child. |
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Contact this Rescue Angel |
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Tammy Krassick N.H.C., R.P. Escanaba, MI |
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Alex |
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With Autism |
After Treatment |
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| Child's Symptoms: |
constant movement in circles, lack of focus, sensitivity to all noises and people, inabiltiy to digest many foods, speech delay |
| Formal Diagnosis: |
I would not let the doctors formally diagnose him, they discussed ADHD, OCD and autism but by that time I started studying alternative medicine therapies and decided to go it alone |
| Cause: |
Intuitively I feel I had toxins in my body I passed to him BUT once the vaccinations started that pushed him into autism, its obvious the toxins in vaccinations really was a great factor in all of this. |
| Helpful Therapies: |
detoxification(absolutely no preservatives, dyes, gluten or dairy) acidophilus, enzymes, b-complex, multi-vitamin, omega's, zinc, Bach flower remedies, reiki, ....as he grows and matures I evolve his treatment plan of recovery |
| What Happened? |
Its a long road that requires patience and focus on the goal of recovery, which is specific for each child. I had switched to a dairy free diet during beast-feeding due to my son having digestion problems. I quit vaccinating at 3 due to ongoing behavior changes and our chiropractor shared startling info with me on vaccination dangers. I changed his diet to gluten-free at 3 because of research and I started my education in Integrative Medicine...then I added supplements one at a time while de-toxing his system. Before Pre-school they wanted to label him and I refused, decided to do my own work since by this time I did not trust anyone in the conventional medical field. I use the waiver form to exempt from vaccinating. I did not find out that what I was doing had a name...I didn't even hear of generation rescue until about a year ago. I feel pretty lucky to have made it this far, but I hope to save parents some steps. The story I tell here is the short version. |
I would like to tell
Doctors ... |
Go back to school or educate yourself about nutrition and all alternative therapies for every disease not just autism and the like |
I would like to tell other
families ... |
Do not give up. Have HOPE that you can change things around. Once you follow a specific protocol and do some lifestyle changes you will see results, it just takes patience |
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Contact this Rescue Angel |
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Dan E. Burns Dallas, TX |
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| Before Autism |
With Autism |
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| Child's Symptoms: |
Gastrointestinal distress (gut dysbiosis), reflux, thrush/candida overgrowth, chronic ear infections, immune disregulation, hyperacusis, apraxia, lost language, small motor skills disintegrated, SIBS (punching head, biting hand), hyperactivity, lost eye contact (used peripheral vision only), nystagmus, perseveration, PANDAS, OCD/anxiety, screaming and screeching, seizures, sleep disorder, tantrums, visual stimming, spaced out, withdrawal, isolation. |
| Formal Diagnosis: |
Severely autistic and profoundly retarded |
| Cause: |
Predisposing conditions, infections and toxic insult, vaccines, and other environmental factors known and unknown. |
| Helpful Therapies: |
ABA/Lovaas therapy, GFCF diet, probiotics, chelation, IVIG, hyperbaric oxygen (HBOT), sensory integration, auditory integration training (AIT), antifungals - very helpful!, Secretin, caniosacral therapy, anti-inflammatories, inhaled glutathione, inhaled/transdermal/injected B12/folinic acid, chlorine dioxide, STAR program at school (finally!), most of the supplementation therapies outlined in Kenneth Bock's book, Healing the New Childhood Epidemics. |
| What Happened? |
Soon after Ben was diagnosed in 1990, I began keeping a diary. By 1995 I had accumulated more than 500 pages of observations, fears, and hopes, all shaped by the vision that someday he would emerge from autism and re-enter the world practically indistinguishable from someone who had never been afflicted. But by 2008, when Ben turned 21, “someday” had crossed the river to a more perfect time and place where every tear will be wiped away. Until then I have an imperfect story of an ongoing struggle, one that has left me with much still to grieve, but also much to celebrate.
When I sat down in December of 2007 and wrote the first sentence of "Saving Ben: A Father's Story of Autism," I could not have said how the book would end, or even why I was writing it. I only knew that the time had come. I had only to tell the truth.
In 2005, Sue and I bought the videodiscs for the most recent DAN! Conference presentations – about 20 hours worth of medical information – and took turns watching them, comparing notes and ideas.
“Did you see the Martha Herbert video about brain inflammation?” asked Sue.
“Yes. Maybe that’s why Ben has a big head,” I replied. “Did you see Jon Pangborn talking about methylation?”
Sue’s excitement rekindled my own. I ordered Pangborn and Baker’s Autism: Effective Biomedical Treatments and began searching for a DAN! doctor who could guide us through the complicated protocols.
I typed Dr. Kotsanis’ name into Google. Up popped his current address and telephone number. We arrived for our appointment on September 18, 2006. Following Dr. K’s advice, Sue and I tightened Ben’s gluten-free diet and reduced his casein intake. Dr. Kotsanis also prescribed glutathione and methyl-B12 shots. After Ben’s metabolism regained its balance and his gut began to heal, Kotsanis pronounced him ready for the next crucial step. We began Ben’s chelation, his detoxification, in December, 2006: DSMA three days on and four days off. Every three months, we measured Ben’s progress with a challenge test, the Toxic Element Profile, “So we’ll know,” Dr. Kotsanis explained, “when to stop.” The challenge test didn’t show how much mercury and other heavy, toxic metals were left in Ben’s body; it showed how much was coming out.
For the first three months, lead came pouring out. “I was tearing down a lead-painted barn when I was pregnant,” said Sue. “I’d forgotten about that.”
Six months into the protocol, Ben began excreting significant quantities of mercury. “We’ve got the culprit,” said Kotsanis. “We’re shaking it loose.” Ben took a five-week series of 40 high-pressure hyperbaric oxygen treatments, supporting his detoxification, and we bought a home low-pressure hyperbaric chamber for home use. Finally, on my birthday, December 7, 2007, one year after we had begun, Dr. K. recommended that we cease chelation and move on to the next protocol.
More tests had revealed another problem, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS), a disease that attacks the basil ganglia, the communication channel between the lower and higher brain. “That could be why he’s not talking,” said Kotsanis. “It may also be driving his hyperacusis.” He put Ben on a protocol of antibiotics, antivirals, and antifungals, plus probiotics to replace the good gut flora. Ben’s symptoms improved. A follow-up PANDAS test showed seven out of twelve panels trending down. Kotsanis prescribed a mineral solution, chlorine dioxide. “It kills everything but the patient,” he joked. But would it cure Ben’s hyperacusis?
By July 4, 2008, Ben’s hyperacusis had vanished. He has not fully recovered by any means. But Sue and I had had found that we were living a recovery story after all. What is recovered is family. Like the characters in The Wizard of Oz, we have made a journey through a perilous land, and we have discovered in ourselves the gifts that prepare us to seek a future beyond the fear, the darkness. After the earthquake, wind, and fire, a still, small voice of peace.
The journey of course is not mine alone. It is the journey of every brave, broken-hearted father and mother; of every teacher, doctor, preacher, caregiver, administrator, scientist, politician, who sees in the tragedy and triumph of a child a challenge and a hope. At the end of the road is not a gleaming emerald city, but a promise. We do not know why some children fully recover and others do not. We have much more to learn about autism etiologies and treatments. But we will tell our stories, and we will continue the journey. Together, we will overcome.
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Bio: Dan E. Burns, Ph.D., graduated from Oklahoma State University in 1979. In 1990 his third child, Benjamin, was diagnosed with autism. Dan and his wife, Susan, explored early biomedical and behavioral treatments. In 1992 the couple divorced and Dan became the primary advocate for his severely autistic, profoundly retarded son. In 2006, Dan and his former wife joined forces to implement the new biomedical protocols coming out of the Defeat Autism Now! conferences, including diet, antifungals, antivirals, anti-inflammatories, nutritional support, and detoxification. Dan, Susan, and Ben live in Dallas Texas. "Saving Ben: A Father's Story of Autism," is to be published by University of North Texas Press in the fall of 2009. |
I would like to tell
Doctors ... |
Attend the doctors' workshop at a DAN! conference. |
I would like to tell other
families ... |
Autism can be partially or even fully reversed. Any age can benefit. Never give up. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Morgan Weihing Moss Point, MS |
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| Child's Symptoms: |
Loss of words,loss of eye contact, tantrums, insomnia, diarrhea |
| Formal Diagnosis: |
Pervasive Developmental Disorder- Not Otherwise Specified |
| Cause: |
Vaccinations...beginning with the Hepatitis shot at birth. McCullough only weighed 5lbs. 14 oz. and was jaundiced. I think the insult, to his already compromised immune system, allowed later shots to overwhelm his system. |
| Helpful Therapies: |
AIT, speech therapy, chelation (DMSA and OSR), HBOT, supplements, melatonin |
| What Happened? |
McCullough's was diagnosed at age 3-1/2 with PDD-NOS. At that time, we were told that our best option was to "take him home and love him". Sadly, the neurologist providing the diagnosis went on to speculate that he was "most likely mentally retarded" and would "probably never drive a car, graduate from high school, or get married". But lucky for us...he couldn't have been more wrong!
We began with traditional speech-language therapy and put McCullough on a sugar free, dairy free diet. We saw a lot of anger/hitting/kicking behaviors decrease once dairy was eliminated, and eye contact improved as well. Later we began a very mild chelator called PCA-Rx. Back then, DMPS, DMSA, EDTA, etc. were not widely heard about (and perhaps not even available), but we had to start somewhere. He did really well with the PCA-Rx, and his speech therapist really noticed a difference in his behavior during treatment.
By 5-1/2, McCullough still wasn't potty trained. We heard about Auditory Integration Therapy, and we decided to try it. By the end of the week, he had his very first BM in the potty and has been fully trained since that time. We were amazed.
The first DAN! pracitioner we went to see was Dr. John Hicks, and we saw him in his Atlanta office. McCullough wasn't sleeping well at all, and Dr. Hicks put him on melatonin. To this day, this has been one of our biggest and best "wows". McCullough started going to sleep by 8pm every evening and sleeping all through the night. Again, we were amazed. Dr. Hicks also put him on various nutrional supplements to strengthen his immune system and increase his glutathione, etc. McCullough continued to make slow and steady progress.
We decided that we were finally ready to try chelation, and we began transdermal DMPS when McCullough was 7-1/2. He did really well with this chelator, though the odor (as well as that of glutathione) was noticeable and some of his teachers made comments. Though we had periodic bouts of regression, those were always replaced with more improved behavior, better language, etc.
By age 10, McCullough was fully mainstreamed in public school and was even in the gifted program! He was doing really well, though his metal and viral loads were still really high. With autism coverage more prominent in the mainstream media, we decided we should try to see Dr. Jerry Kartzinel. We saw him for the first time in December of 2007. McCullough's supplements were tweaked a bit, and he was placed on oral DMSA. He did really well with it, and we saw a fair amount of lead pulled with this chelator. Progress continued, slowly but surely.
Just prior to seeing Dr. Kartzinel, we discovered a hyperbaric treatment center in Ft. Walton/Destin, FL. Knowing that most HBOT centers primarily serve adult patients, I called to see if they would see a child with ASD. I was amazed whend Dr. Eddie Zant answered the phone himself and answered all of my questions about HBOT! McCullough began his first round of HBOT in July of 2007 and finished up that October. He just finished his 3rd round of 40 dives in early May 2009. He says HBOT makes him "feel good"...and that's all the proof we need to keep going with it. (Not to mention he LOVES Dr. Zant!)
McCullough is currently on OSR, a number of nutritional supplements, and is now homeschooling (at his request). He is doing beautifully though we continue to see the occasional setback and subsequent recovery/improvements. He loves to play the computer and really enjoys Japanese anime/manga. Our present "goal" for McCullough is for him to be a little more engaged with us in conversation. He still prefers topics of his own choosing...but hey, don't all 12 year old boys?
McCullough's journey to recovery has been long and slow but steady all the way. We saw very few miraculous treatments, but experienced much success with many. All in all, we have found that, whatever treatment you decide you try...you HAVE TO STICK WITH IT. You can't give up because you don't see amazing results right off the bat. The amazing results could come at the end of a long series of small steps. Steps in the right direction...steps towards recovery. |
I would like to tell
Doctors ... |
Take care in the way you talk to families. Recognize that you may not know everything there is to know, and a parent may know more than you (especially about their child). Do not make long-term predictions about a child's prognosis as he/she may go much farther than you could ever imagine. |
I would like to tell other
families ... |
Never let the words of any doctor or professional limit the hope you have for your child. Every child with Autism can get better...they might not recover, but they can get better. |
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Contact this Rescue Angel |
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Abby McKinney Brownsburg, IN |
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Haiden |
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With Autism |
After Treatment |
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| Child's Symptoms: |
Delayed speech, social skills impairment, difficulty with transitions, severe bowel issues, constant ear infections and colds, difficulty sleeping |
| Formal Diagnosis: |
PDD-NOS |
| Cause: |
weak immune system followed by 21 vaccinations by 15 months of age |
| Helpful Therapies: |
GFCF diet, no artifical sugar, no artifical coloring, all organic foods, supplements, speech therapy, occupational therapy |
| What Happened? |
Haiden's severe bowel issues went away. He then started sleeping much better. We now have normal conversations with him and he converses with other adults and children. He has more age appropriate interests and is much more healthy. A more detailed description of his recovery is posted on our blog at www.mckinneyclan3.blogspot.com. |
I would like to tell
Doctors ... |
Thank you, thank you, thank you. Keep doing what you are doing. We need more of you! |
I would like to tell other
families ... |
Trust your instinct! |
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Contact this Rescue Angel |
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Christina McKay Long Beach, CA |
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| Before Autism |
With Autism |
After Treatment |
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| Cause: |
MERCURY TOXICITY |
| What Happened? |
With Darren, once we started the GFCF diet at 2 1/2, steady progress was made and his bowel problems resolved...yes friends, normal poops! Around age 3 we began The Listening Program and his speech returned fairly rapidly. Stims, rigid behavior and inability to function in new situations as well as sensory disfunction remained an issue that we addressed through OT, speech and ABA. Our family could not afford Biomedical treatments on just my husbands salary...it was painful for me to know what was out there and not be able to provide it for my son. My wonderful brother in law gifted us $10k which we dedicated to Darren's treatments. We quickly found a DAN doctor in our area and began testing for deficiencies and metals. Suprisingly his metal levels were low, we suspect this to be because he did not fully digest the provoking agent DMSA. We began HBOT therapy and by the 4th session my son could tell that he was getting better and said so...i knew this to be true after the 1st session as his attention was better and he did not stim on the way home. After 40 sessions of HBOT, adding in vitamins for which he is lacking, consistency of schedule...book in bed at 8:30, lights out at 9, up at 6:45 he is able to function at school with minimal assistance, he is social, has friends, asks questions for information "How was your day at work" then probes for more details, is sensitive...cried when we told him we were having to put our dog to sleep..."Oh, I will miss Charlie when he is up in Heaven" a nice appropriate, perfectly formed sentence...yahoo!! His sensory system has aligned so he is more accepting of new foods, even saucy things that used to make him gag. We can go to the movies, to parties, to the grocery store, to the park, for a walk and I do not have to worry that my Autistic son will wander/run off. He follows the rules, and complains about them too. He LOVES his parents and says so...he misses people and asks if we can go see them. He has desires and hopes and dreams...for the past 3 or 4 years he has said that he wishes to work with the Emperor Penquins in Antartica when he grows up...that's his wish and he's sticking to it!! He is funny, theatrical, participates fully at school, though he still hates to write...doesn't see the point in it if he can answer the question verbally. I enjoy being around my son, he is a true joy in my life whereas once upon a time I felt like all of you, why me, what now, HELP!! It does get better, your child can get better...do not give up on the diet, it DOES work! Any small infraction and it sets my son back years...it took a good 6-9 mos. to see the full effect of the removal of gluten, though dairy was immediate. I saw his anxiety level melt away and he began to smile again and stopped the constant jjjjjjjjjjj noise he made. |
I would like to tell
Doctors ... |
Be gentle, go slowly, be willing to modify your office for these kids...no paper gowns, examine them on the floor so they don't have to sit on the table, dont force them to do anything, lower the lighting in the office. Flag the file so that if you see a different doctor each time the parents dont have to feel uncomfortable telling them about the childs condition...especially when the child does not know he/she has the disorder |
I would like to tell other
families ... |
DO NOT GIVE UP!! ask for help, ask questions and ask again if you did not understand the first time...seek a 2nd, 3rd or 4th opinion if you believe in your gut that the problem lies somewhere else...for instance, my son's whole year between his 1st and 2nd birthday...as he was disappearing into Autism, he was soooo sick that I was taking him to the gastrointeroligist...the top specialist at the Children's hospital...he told me my son was waisting and did not have enough fat in his diet...i was thinking "all the kid eats is hot dogs, milk and cheerios. The doc. put my son on mineral oil which only came right out in his diaper...I knew all along it was something else...mom's always know...trust your gut!! |
|
Contact this Rescue Angel View Our Vaccine Injury Details |
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Alicia Hatcher Holly Springs, NC |
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| Child's Symptoms: |
Non-verbal, sensory issues, no eye contact, picky eater |
| Formal Diagnosis: |
Low functioning, mentally retarded, non-verbal |
| Cause: |
A combination of a deficient immune system, vaccines and environmental toxins |
| Helpful Therapies: |
GF/CF diet, chelation, DAN! protocol, vitamins and minerals (especially MB-12) |
| What Happened? |
When Ryon was born he was extreamly typical. He had a cousin born 28 days before him and a cousin born 28 days after him, all of them met their milestones at around the same time.
Ryon went for a well baby visit at 12 months. I asked the doctor about Dr. Wakefields article in the UK about the MMR and autism. I was told it wasn't true but my gut said something different. I refused to sign the consent form, my husband signed.
By the time Ryon was 3 we had a diagnosis of low functioning autism, non-verbal, mentally retarded and were told to start looking for an institution.
After 6 months of grieving the diagnosis I got really mad. How could they tell me that there was no cure when they didn't know the cause! I started reading and doing some research (not a lot was out there but the recovered kids were starting to emerge). I read Karyn Seroussi's book "Unraveling the Mysteries of Autism". It talked about her son getting better by changing his diet! I talked it over with my husband, he now likes to say he agreed to the diet change just to shut me up but I know he was as willing to try anything that may help as I was.
I asked his doctor to help implement the dietary changes, she refused saying it wouldn't help. So I did it myself. After about a week on the gluten and casein free diet we had eye contact, after 2 weeks Ryon started talking again. We had to take one of my daughters to the doctor around this time. When Ryon pointed to the stethoscope and then to his ears the doctor was in shock. The change since she had seen him 2 weeks earlier was amazing. She still didn't believe the diet was helping and wanted to do tests. The doctor asked that we take him off the diet for 2 weeks and come back in. Big mistake, he lost all of his gains. I cried and then we found a new doctor.
We did as much as we could on our own, not knowing of any resources when I found a website about DAN! Doctors. We started seeing Dr. Elizabeth Mumper. She ran tests to find out if he was toxic in anything, allergic to anything, and if he had yeast issues. The answer was yes to all of the above! He was toxic in 10 different heavy metals (off the chart in some), allergic to gluten and casein and minorally allergic to a few other things that we never did remove.
We started him on vitamins, minerals, and medication to remove the yeast. We were already on a GF/CF diet. After we got his gut cleared of yeast we started chelation. This took a long time because everytime the yeast came back we had to stop chelation.
Ryon was fully mainstreamed in school in 2006 with some interventions. He stopped chelation in early 2008. We chose not to get Ryon re-evaluated in school in 2008 because we (and the teachers) knew he would no longer meet the criteria for autism. If this happened he would loose his interventions that he needed because he was still delayed. Now at the end of the school year for 2009, he is fully mainstreamed with no interventions. While he is still slightly immature for his age, he has the highest growth points (for the 2nd year in a row) for his class. |
I would like to tell
Doctors ... |
Thank You!!! Without doctors willing to go against mainstream medicine we would all be lost. |
I would like to tell other
families ... |
Not to give up. Healing and recovering is possible. |
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Contact this Rescue Angel |
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Maureen Bullhead City, AZ |
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Justin |
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| Before Autism |
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After Treatment |
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click a photo to enlarge
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| Child's Symptoms: |
Visual Stimming, do not change driving routes, |
| Helpful Therapies: |
GF/CF, Preschool |
| What Happened? |
Justin had very little speech, he could not express himself at all. He would whine to tell me what it was he wanted, could not point, he could not play. He would spin, and head bang, and focus on the wheels of his metal cars. I started doing research, (Thanks Jenny), Found GF/CF for Kids on Yahoo. Slowly began to implement GF/CF. Instantly I saw changes. 4 Months later I enrolled him in preschool, advising the school of his limitations, and so very scared to leave my baby. Today he is a different child. He Speaks, and is able to communicate what it is he wants, tells me he loves me, kisses my boo-boo when I get hurt, his vocabulary is off the charts. He is soo very smart. He can play with other children (we still have a ways to go on this) but he plays. I am soo very grateful to Jenny and to all the mom's out there on the yahoo GF/CF Kids site who know so much and take all the time to share with the rest of us, TACA, and so many more who shared their personal stories and strategies to aid me in recovering my child. To all of you, Angels, Peace be with you. |
I would like to tell
Doctors ... |
Thank you for the resources. |
I would like to tell other
families ... |
Faith Happens |
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Lisa Phillips Mesa, Az |
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| Child's Symptoms: |
6 -year old no eye contact, first word at 2 years of age and echolalia, constipation, hand flapping, and sensitive to noise, haircuts and clipping finger nails! / 4 year old- regressed at age 2. very big speech delay, no eye contact, meltdowns and tantrums, diarrhea, waking up every night at 2 a.m. screaming, never played with other kids |
| Formal Diagnosis: |
autism- both boys |
| Cause: |
I think that it could be many causes...possibly the vaccinations at 6 months, but definitely his food. Also, he tested high for toxic metals, bad bacteria and bad yeast in his system. |
| Helpful Therapies: |
6 year old- GF/CF diet /
4 year old- GF/CF diet, speech, occupational, speech therapy, music therapy
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| What Happened? |
48 hours after taking my son off of dairy, he said his first sentence when answering my question...something he had never done. He was a week or 2 away from turning 4 years old. Ip till that point he could only use language he had heard and repeat it just like he heard...echolalia. For example, i would ask him if he wanted a cookie and he would say to me, "want a cookie." He could not answer what is your name or how old are you or even yes or no. He continued to get better each day and develop his language at a very fast rate after that. After taking him off of dairy...we removed all gluten the next month. Today he is very social, makes good eye contact, very verbal and very smart. He is still in speech therapy to help with a few minor delays but nothing that would hold him back in any way. He is getting better every day! |
I would like to tell other
families ... |
There is hope. What works for one may not work exactly the same way for another. You have to keep trying till you find what works for you. Don't give up...your child is worth it! |
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Contact this Rescue Angel |
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Kelsie Hinton Bridgeport, OH |
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| Child's Symptoms: |
He was constantly hurting himself, tantrums all the time, appeared to be deaf, constant diarrhea |
| Formal Diagnosis: |
Mild to moderate autism |
| Cause: |
Vacines |
| Helpful Therapies: |
ABA and OT |
| What Happened? |
After Wyatt got his MMR i noticed a difference in him. I would come in the door from work and he wouldn't even notice me, unless I took his toy animals from him.I thought there was something wrong with him, I knew in my heart somthing wasn't right. Although his doctor swore everything would be fine. I thought he was deaf so I went through all the hearing tests he finally did get tubes in Dec. of 06 due to a little bit of fluid. He never talked the doctor said he'd talk when he was ready. His tantrums were awful, we never slept. And I will never forget the night he had a tantrum from 10 pm until 3 am when I finally put him in my car and we went for a ride. He had so many signs of autism but the doctor again said he was fine. Finally after fighting with Dr.Marks office and with the help of Help me Grow and Birth to three we got the diagnosis. I went in to his doctors as a parental concern appointment, I was a single mom and was running out of ideas of how to deal with the tantrums.I was told to lock my child in his room. I could not believe what i was hearing!! I repeated what the assistant said and then told her i'm not locking my child with autism in his room. She said she didn't know he was autistic I simply said look in his file and you will find a letter addressed to doctor Mark Wilson because I have the same one at home. Then she went on to say how hard it must be being single with a autistic child whose father is not involved. I said no kidding I just want to know the best way to handle him. Then I was told that she could not help me because they don't treat austic children. Can you believe it? Well this whole time Wyatt was getting speech and was improving on sounds,no words yet. Then I had to fight with the school district to get him into the School of Hope and was told that him being a child with a disability in their district they will place him where they want him,which was there school. They only saw dollar signs, they seemed to care less about these children. So I moved out of there district and got my baby into the School Of Hope, where he gets ABA,OT,and speech he has been there 2 years now and he is a totally different child . I could not believe how wonderful they were with him. I will forever be grateful. |
I would like to tell
Doctors ... |
You will never understand how grateful we parents are to you |
I would like to tell other
families ... |
Never give up the fight for your child |
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Nancy Sagui Boerne (adjoins San Antonio), TX |
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Tyler |
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| Before Autism |
With Autism |
After Treatment |
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| Child's Symptoms: |
No eye contact, severe stimming, severe self injurious behaviors, significant developmental delays (including gross motor, fine motor, speech, & social interaction), multiple ear infections, sensory issues, foul stools, severely distended belly, and more. |
| Formal Diagnosis: |
We heard everything...Developmental delay, cerebral palsey, PD-DNOS, sensory integration dysfunction, and my favorite: "He's just developing slowly...he's fine." |
| Cause: |
I don't think we have all of the answers yet, but I'm relatively sure vaccines played a role. Too much regression immediately after the MMR, and too much mercury in his system. |
| Helpful Therapies: |
Top winners for us have been GF/CF diet, chelation, hippotherapy, and DAN! protocol (including B-heavy miltivitamins...specifically Super NuThera & SNT Everyday Companion by Kirkman, probiotics, enzymes, yeast control, cod liver oil, methylcobalamin shots, zinc, TMG, colostrum, L Glutathione both in pill and transdermal forms, CoQ10, taurine, lipoic acid, epsom salts, iodine...a lot of DAN! supplements!!!). Our guy had massive yeast growth, so Nystatin helped that, which helped his behaviors a lot, too. |
| What Happened? |
Tyler is not yet "recovered." We started out with a child who was so severely low functioning we were advised to seek institutionalization. We are very happy with the dramatic improvement we have seen. When we started, he lost all but about 10 words ("cracker," "cookie," "bread," "NO"...), had constant goose-eggs from banging his head, bit holes in his arms, did not interact, had severe gut issues, and basically could not function in any sense. We went 3 years without going to church or out to eat. Once we found a DAN doc and put Tyler on the vitamin protocol, 20 hours or so of therapy a week, and a GF/CF diet, he began to improve steadily. Chelation therapy followed, and we saw improvement in his behavior, eye contact, and word use every round. It was a slow process, but worth every bit of blood, sweat, and tears (literally!). B-12 shots gave us our little miracle story. The night after starting them, Tyler brought me the bottle filled with the shots and said "Medicine Please." He only had about 20 labeling words at that point, no phrases. I was shocked. Two days later, that milestone paled in comparison when he came out of his room in the morning, sat on my lap, looked me in the eye and said "Love you mommy." Worth every minute of work, and every dime on the vitamin therapies. We're still working for more improvement, and it keeps coming...slowly. Don't be discouraged if improvement is slow. We know that not every child can fully recover, but that doesn't stop us from continuing to try to help him reach his full potential, and it doesn't stop us from celebrating every small step forward. |
I would like to tell
Doctors ... |
Just because you don't have personal knowledge of the therapies and treatments that are helping these children does not mean that they are not successful. Do some research beyond an hour one night on Google before you give advice to parents about their autistic children. If I had listened to my pediatrician and not pursued the "pipe dreams" she told me were a waste of time, my son WOULD be in an institution right now, and not getting dressed to go swimming with his sisters. |
I would like to tell other
families ... |
Never lose hope. Remember that autism is NOT a curse, and God gave you this special child because he thought enough about YOU to trust you with a difficult task. What an honor to serve Him by caring for these amazing little children. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Chelsi Kelly Bullhead City, AZ |
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Pierce |
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With Autism |
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| Cause: |
Not 100% sure but I do believe it could be linked to his vaccinations... He had a severe reaction when he was 2 and at age 4 he received 5 shots with like 9 different viruses and that was when we really started to lose him in his own world. |
| What Happened? |
We started Pierce on the GF/CF diet about 1 month after his diagnosis and with in 1 week we saw a dramatic improvement in his speech, he actually started telling us about things that had happened months before... it was like they were sitting in his head just waiting to come out... Then we started chelation and detox and our friends and family who doubted his diagnosis were commenting on his improvement. They were wanting to know what we were doing diffrent they would say "Pierce actually noticed me today."
We are still on the road to recovery we have good days and bad but through all of it God is faithful and is a great source of strength for us. I can't wait for Pierce's next evaluation to hear what the doctors think. |
I would like to tell other
families ... |
Just try it... it can't hurt to try you don't want to hear 10 years from now that this was the answer and you didn't try. |
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Contact this Rescue Angel |
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T.J. Bader Katy, TX |
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| Child's Symptoms: |
Loss of speech, poor eye contact, lack of original language, chronic ear infections, toe walking, constantly lining up objects, the list goes on. |
| Formal Diagnosis: |
PDD-NOS |
| Cause: |
Genetics and flu shots. |
| Helpful Therapies: |
GF/CF, supplements, ABA, speech,, behavior modification, social interaction, ballet, and gymnastics. |
| What Happened? |
She had made great progress with one on one ABA and socialization through school program and external social outlets, but was still having communication issues. I spoke to a mom of an autistic child at a birthday party and she blew my mind with information. I will never forget that day. It changed our lives. She told me to read 2 specific books and I was sold. I was able to detox my daughter with supplements and fix her other issues as well. She actually used to have a metalic smell when she would sweat. I just thought that was her smell from her PH becuase my husband smelled the same way, not bad, just like, metal. She no longer has that smell when she sweats. It's amazing. She's more interactive and engages in conversation and is just seems like any other kid getting ready for regular school. She no longer needs services, except for speech, with is in most part due to a retainer. She now shows affection and sometimes I can't get her to stop talking. It's like the difference between night and day. |
I would like to tell
Doctors ... |
Listen to the moms and fight for insurance companies to start covering treatment. |
I would like to tell other
families ... |
Embrace the autism, but try, try, and try again to recover. |
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Contact this Rescue Angel |
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Maureen Block Belvedere, CA |
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| Cause: |
Maternal mercury levels plus vaccinations |
| What Happened? |
It became obvious my son had autism before he turned 2 years old. Biomedical intervention played a huge part in his recovery. Please see the web address below to view a detailed article on the interventions I used for his recovery.
http://ryderfoundation.org/pdf/ryderfoundation_childsjourney.pdf
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I would like to tell
Doctors ... |
Keep an open mind because some of the non traditional treatments are instrumental to recovery. |
I would like to tell other
families ... |
Keep an open mind because some of the non traditional treatments are instrumental to recovery. |
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Contact this Rescue Angel |
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Alexander Stewart lansing, New York |
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| Child's Symptoms: |
Thought process, attention span. |
| Formal Diagnosis: |
ADD |
| Cause: |
MMR SHOTS. |
| Helpful Therapies: |
Early Intervention |
I would like to tell
Doctors ... |
Please don't stop caring about what you do. Because of your dedication, We the families of Autism, are seeing the fruits of your labor. |
I would like to tell other
families ... |
Don't give up, if you seek help for your child early, and get proper care you will see a change. Get Autism educated. |
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View Our Vaccine Injury Details |
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Sommer Slosson Southlake, TX |
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Zane |
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| Before Autism |
With Autism |
After Treatment |
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click a photo to enlarge
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| Child's Symptoms: |
No eye contact, non-verbal, stimmed all the time (to the point of hurting himself), head banging, sensory issues |
| Formal Diagnosis: |
Severe expressive-receptive language disorder, possibly autistic, sensory processing disorder. |
| Cause: |
Genetics (have confirmed via Dr. Amy Yasko), my autoimmune issues, vaccines, medical treatment due to Croup |
| Helpful Therapies: |
Nutrigenomic protocol by Dr. Amy Yasko, GF/CF. Speech and occupational therapies helped some but always keep in mind that any therapy not addressing internal imbalances only assist in better functioning- they don't recover!
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| What Happened? |
At 22 mos, Zane's possibly autism was suggested to me by an honest (and therefore loving!) neighbor who'd known Zane since birth and who had knowledge of autism. I asked her to explain because I knew nothing about autism, and after describing what she knew, all of Zane's oddities and the idiosyncracies he'd increasingly exhibited flew to the forefront of my mind like a tidal wave- it all made sense. My research began that day and I had him into his pediatrician within a few days. Thankfully (and a rare experience, I later learned), the dr agreed there were "red flags," and referred us to a speech therapist. Speech therapists can't diagnose autism, but did agree about the autism red flags, and cited Severe Expressive-Receptive Language Disorder. Occupational therapy was soon added to the agenda and by the grace of God, a friend shared with me her knowledge of Dr. Amy Yasko and the reality of recovery. My heart raced for two days because it was the first real bit of hope I'd had in the whole experience thus far, having repeatedly read in my research the dim outlook of merely hoped-for/not-promised, extremely limited future of my first and long-anticipated child. My heart had been ripped out and I had a piece back, and I was running like hell to that light of hope! Still running, light is brighter and the horizon is widening. ;) |
I would like to tell
Doctors ... |
Stay on top of research and BE REAL. |
I would like to tell other
families ... |
Recovery is happening! have hope!
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Cindy Walsh Chantilly, VA |
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| Child's Symptoms: |
Tantrums, OCD, Stimming, Lethargy, Yeast overgrowth, Gluten and Casein Intolerance, Allergies |
| Formal Diagnosis: |
"consistent with autism spectrum disorder" for both boys |
| Cause: |
Mitochondrial dysfunction plus MMR, Heavy Metals, Yeast Overgrowth, Lowered immunity, Allergies, Gluten and Casein Intolerance |
| Helpful Therapies: |
All of these (Speech, Anitfungals, GFCF diet, Feingold Diet, Low Oxalate Diet, IGG Allergen Tests, OSR) |
| What Happened? |
They had a dramatic improvement from GF/CF diet, plus Feingold, Another leap with OSR, and the antifungals as well. Their treatments were not consistent with each other even though they are identical twins. Robbie has a few minor issues, Eric does not fit the criteria for autism at school. They regressed after the MMR shots. They had a high fever and a rash. |
I would like to tell
Doctors ... |
Go to a DAN! conference! |
I would like to tell other
families ... |
Autism is Treatable! Twins with autism can respond differently to treatments, supplements and therapies. Symptoms between identical twins can also be different. There is an environmental as well as a genetic link. |
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Adriane De La Garza Spring, TX |
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| Cause: |
I'm not sure. Having read more, I do feel that perhaps, perhaps vaccines played a part. However, in our case, autism runs in our family. We have generations back of people with autism. |
| What Happened? |
After fighting to get him diagnosed...and copious amounts of time lost, waiting for doctors to fax a sheet of paper to get things approved.
I took my initiative and started going every conference and training I could get my hands on. I ready every book there ever was about autism. I have to say, to this day, I feel Temple Grandin's books have helped the most. They helped me understand his world and how he felt.
Anyway, so we started doing developmental therapy and floortime. Nothing really seemed to work, so we also incorporated the GF/CF diet. At this time, Kai was having horrible boughts with diarrhea, screaming all night. Within two weeks, his therapists noticed that he was concentrating better. He started picking up more skills. He was still having tummy issues, but not as severe or as frequently.
Next part, 2 1/2 became nonstop therapy. It became my little angels job. He was still doing speech, developmental therapy, 3hrs of social time with other children a week and ABA. ABA...two days he started trying to speak, two weeks later, we were getting words. Within four months, we were exclusively doing ABA and had enrolled him in a school for children with autism
At this point, we still had not recieved help from any doctors. We were doing everything on our own. In fact when we finally went in for diagnosis, they were surprised that we had started without them.
Finally April of 2009, we were out of money and had to cut back on ABA *luckily, we got new insurance that paid for it, but our funds had been depleted by this point, we are severly in debt. Anyway, I made an appointment to see a DAN! doctor. We had one previously, but because of a hurricane all appointments had been cancelled for several months, and it took a long time to get back on the waiting list.
We met with our doctor and began an even more vigorous GF/CF/SF diet, no artificial dyes,flavorings. I went one step further and no MSG..that stuff is evil. Kai began taking supplements, once again, his language sky rocketed. Full on sentences.
So we went to the neurologist July 2009, he freaked out when he saw my Kai. He couldn't believe it. He told us that he no longer qualified for autism under the DSM IV and that he was in recovery.
However, because of his severe speech delay, he will need speech. Kai never babbled or spoke. When he finally started making sounds, it was gibberish, he would make conversation in the jargon. His speech therapists and even his psych said that he would be in speech for a very long time. Kai might even have to go to a school for children with speech disorders and that he might never really speak properly. WRONG!! He's only about six months behind in speech, not bad for somebody who only started speaking less than a year ago. He has a larger vocabulary than most children his age. His only problem is that he doesn't have all his sounds down, ex. y is l, etc. His new speech therapist is thinking he'll be out in 6 months.
As for social skills. Let's put it this way. We took a trip yesterday to a bookstore, we went straight to the trainset. Two little girls walk up to Kai, he looks at them, he's almost 3 1/2 now and says "hi", "sharing caring", and gives them both a train. They all start racing their choo choo trains around the track, when we leave kai says "here you go" and gives the train to another little girl. He's more polite and shares better than most kids older than him. Less than a year ago, we were kicked out of a gym because he was too violent and would grab large objects and his kids over the head with him. This is the same little boy that 6 mos ago, I couldn't leave him alone with his little sister because he would grab her had and bash it repeatedly on anything hard in his vicinity. This is the same little boy they told me that would have to be on medications because he had severe behavior issue.
His motor abilities. The only thing he really has trouble now is cutting in straight lines. I'm not worried about that...i can barely cut in a straight line. Also, he can't copy or trace a circle. But he can draw a square and a triange. So they are puzzled. That's what a compass is for. I'm not worried about such trivial things at this point.
He's happy, bright, and resilient. I think he just needed to heal from the inside, in order for him to learn everything he needed to learn. |
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Cynthia Burrow Austin, TX |
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Zachary |
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With Autism |
After Treatment |
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| Child's Symptoms: |
Diagnosed PDD-NOS:
Significant language delay
Significant echolalia
Poor eye contact
Behavioral issues (aggression)
Sensory integration issues |
| Formal Diagnosis: |
PDD-NOS |
| Cause: |
I simply cannot say with 100% certainty. The month I feel his regressive autism really became evident we did a round of vaccines; and we got a new mattress; and he moved into a new, more crowded classroom in Preschool; and we took a vacation to a very high-altitude location. Probably all of these things worked together in a "lethal cocktail." |
| Helpful Therapies: |
GF/CF diet, Fish oil, 5HTP, MB-12 (most helpful), ABA |
| What Happened? |
I would say we are not 100% there yet--we still have lingering sensory issues. Zachary has almost caught up to his peers in language and his social interaction is much more positive. We started with the diet and saw immediate results (less self-injury, better attention). We have followed the DAN! protocol (more slowly than I would have liked, but you do what you can), and each treatment got us a little closer to where we wanted to be. Treating yeast and methyl B-12 have given us the most amazing results. Alongside nutritional and biomedical therapy, we have done ABA which was extremely helpful in catching Zach up in language, academics, and social interactions. |
I would like to tell
Doctors ... |
Be gentle with parents. We are living in a state of trauma. Answer our questions, hold our hands, and empower us to make good decisions (don't dictate or judge). Also, talk to each other and get over the "us versus them" mentality. No two children are the same, so it's highly likely that each child will need help from a variety of practitioners--nutritionists, DAN! doctors, neurologists, speech therapists, occupational therapists. Doctors need to learn about and be open to all areas of treatment that may help a child recover from autism. |
I would like to tell other
families ... |
Listen to your gut, never give up, and be gentle with yourselves. It's become a cliche to say "autism recovery is a marathon, not a sprint," but it's absolutely true. There will be advances and setbacks--be patient and keep the faith. |
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Contact this Rescue Angel |
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Carla Piccarreto Rochester, NY |
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James |
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After Treatment |
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click a photo to enlarge
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| Child's Symptoms: |
echolalia, stimming, no eye contact, perseverative behavior, eating perseveration, rash on upper arms/thighs, rocking, no fear of anything, sleep disorder |
| Formal Diagnosis: |
Autism |
| Cause: |
Vaccine |
| Helpful Therapies: |
All ~ each offered a piece, no matter how small, to progress. ABA made the most impact |
| What Happened? |
Autism not a barrier to Piccarreto's graduation
Rochester Democrat and Chronicle - Rochester, N.Y.
Author: Meaghan M McDermott
Date: Jun 27, 2009
Section: NEWS
Sixteen years after learning her son James has autism, Carla Piccarreto can finally cry.
Piccarreto, of Greece, said she took the news dry-eyed when her son was diagnosed at age 2. Doctors told her then that her boy would probably never speak, never bond with her and likely couldn't even be educated.
"I sat there in the doctor's office and said to myself 'I'm not buying this,'" said Piccarreto. "My family said 'she's in denial, she's not crying.' But my attitude was 'what's next?' and 'what can I do?' I knew I saw a spark somewhere in his eyes, and I told myself I'll cry when he graduates, and that's been my mantra."
Friday night as his mom, her fiancee Stephen Colangelo, his younger brothers, grandmother, dad Thomas Passamonte and longtime one-on-one aide Chris Schenk watched, 18-year-old James Piccarreto donned his black cap and gown and crossed the Athena Performing Arts Center stage with about 100 other graduates from Greece Odyssey Academy.
But while his graduation is a major cause for celebration, it is also a cause for anxiety. By picking up his hard-earned local diploma, James begins a new and perhaps more daunting challenge shared by the hundreds of thousands of the nation's other young people also on the autism spectrum: becoming an independent adult in a world built by people whose brains don't work the same way theirs do.
"There are still a lot of gaps for him, areas where his skills aren't that strong," said Carla Piccarreto. "We're really stepping into unfamiliar territory."
Still, James has big plans for his future.
"Now I have to learn how I'm going to succeed," he said. "I'm 18 and going through transitions now. When I'm 21, maybe I'll be ready with more skills. In my mid-20s maybe, or my 30s, I'd like to date and have a wife if possible and if I do, I'd like to have a child I'd name it Carly Lois Piccarreto or Thomas Steven Piccarreto or maybe Jeff just for fun."
Fierce advocate
At nearly 6 feet tall, James is bulky and strong. To look at him, no one would know how desperately he needs routine and consistency, needs to be shown how to do something, sometimes over and over, before it sinks in. He doesn't read verbal cues well, doesn't catch on to sarcasm and has a hard time understanding how to interact with other people, especially kids his age. He sometimes fixates on time, or gets so caught up in telling a story that he won't stop no matter how much others try to interject. A few tics, like touching his face, still show up when he gets nervous, anxious or frustrated.
When James was diagnosed, Carla devoted her time to researching the most current and effective therapies for children with autism.
She worked tirelessly with him at home. When James couldn't speak, she learned sign language and demanded he communicate by bringing her a picture of whatever it was he wanted. She let him know his boundaries while playing outside by drawing traffic signs on the sidewalk with chalk. She labeled nearly every item in the house with its name, turned lessons into repetitive songs and trained and hired high-school kids to come to her house and work with James using techniques she'd picked up at conferences or from researchers.
When James went to school, Carla became a staunch advocate for her son. She battled for a one-on-one aide, for different methods of teaching that she felt would be more successful, for various behavioral therapies. She documented his every gain, his every loss, and honed her advocacy skills so she could help other parents navigate the bureaucracy of educating a special-needs child.
"When I look at my son, I know I wasn't fighting with the schools just to fight," she said. "I fought because I knew that everything I was asking for would benefit him."
A big year
This has already been a big year for James. He's gone to his prom, took and failed his first driver's test, and had the biggest thrill of his life: meeting champion race car driver Jeff Gordon at this year's Daytona 500. Since James is a big fan of stock cars, Carla has taken him to a major race every year he's been in school as a reward for doing well. They saved NASCAR's biggest race for the year he would graduate.
As in most areas of their lives, Carla's persistence again paid off. A letter she wrote to the president of the Daytona International Speedway netted them pit passes that allowed her and James to get close to their favorite drivers.
"All of a sudden it's 1:30 or 1:45, before the race, and here come Jeff Gordon with all of these fans and he's signing autographs," said James. "So as he comes closer, Mom gets her camera ready and jumps right in front of him. I hug him and say 'It's you, it's you' and Mom gets ready to take the picture ... and her batteries died."
They didn't get their picture of Gordon then, but a few minutes later they had another chance when they got near Gordon and his pit crew.
"Jeff goes to her, 'Did you finally learn to work that thing?'" said James, adding that Gordon is his mom's favorite driver, too. "She couldn't even barely talk when we were there. She just couldn't, but I was more relaxed."
Carla laughed.
"The irony is that the little boy they all said wouldn't talk turned to me as we left there and said 'Mom, what happened to you in there? Why couldn't you talk?'" she said.
James' knowledge of NASCAR is stunning. Ask him about almost any race in the 61-year history and he'll give you a lap-by-lap recap. His dream is to become an announcer for NASCAR and he has taken broadcasting and communications classes in school. He'd like to study communications in college.
Blazing trails
According to the Autism Research Institute, the number of children diagnosed with autism has skyrocketed from a pre-1990 five children per 10,000 live births to 2007's rate of nearly 1 in 150 children. Boys with the disorder outnumber girls four to one.
In coming years, there will be many more young people like James finishing high school and heading out into the world of college and work, marriage and adulthood.
"We hope we are trailblazers," said Carla Piccarreto of her work getting James the help he needed -- and was entitled to by law -- in school. "I've always said we were blazing a trail, pioneers. We were big proponents of developing a lot of the autism programs and specialists they now have in Greece."
She hopes her efforts will have a lasting impact.
"But I know how quickly doors can shut behind you," she said.
Now that high school is done, James will have to start fighting for himself.
"The major difference after high school is that you have to ask for the services," said Colin Garwood, executive director of LDA Life and Learning Services of Rochester, an agency that assists children with learning disabilities and their parents. "You have to let (colleges or employers) know that you've got a disability and you've got to be able to document that. Once you let them know, they are required to give accommodations if your documentation qualifies you for that."
Already, Carla and James have arranged for help with driving skills from Rochester Rehabilitation Center. He has a driver's test coming up in July.
They're also working with Lifetime Assistance and other agencies to get James help with such skills as budgeting, interviewing, shopping, cooking and communicating with bosses.
Although he hoped earlier for a full college schedule after high school, James has decided that would be too stressful.
Still, he's going to take at least one, if not two courses at Monroe Community College in the fall.
But for now, he's still got graduation and his upcoming party on his mind.
"I'm going to have to figure out what to do with all my graduation gifts, stuff, whatever I get coming up," he said. "I'm probably going to have to get a bigger memory box just to throw all my graduation stuff in ... probably buy more Kleenexes for my Mom."
MCDERMOT@DemocratandChronicle.com
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I would like to tell
Doctors ... |
Don't treat them generically - see them as individuals with individual symptoms. Open doors for parents ~ share as much info as you can with them. |
I would like to tell other
families ... |
Use others for support - we've been there, we understand. Try new things. Be creative. Even a small percent of progress is still progress! Celebrate every success - no matter or big or small, celebrate! Take advantage of every teachable moment in your day! And hang on to your sense or humor, as hard as it may seem ~ it can really come in handy! |
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Heather Benson LK Hopatcong, NJ |
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Annika |
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| Before Autism |
With Autism |
After Treatment |
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click a photo to enlarge
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| Child's Symptoms: |
Neurological physical disability |
| Formal Diagnosis: |
Encephalopathy unspecified |
| Cause: |
DTaP vaccine april 07 |
| Helpful Therapies: |
b!2 shots |
| What Happened? |
Our daughter is still recovering. She cannot stand or walk independently because she has neurological symptoms that include leg spasticity when she eats Gluten, Casein, or Corn. But she is a fighter! We are a work in progress :) |
I would like to tell
Doctors ... |
Stop backing down to vaccine manufacturers!! Stand up for these kids who are injured, someone has to or more kids are going to keep being hurt! |
I would like to tell other
families ... |
It is a long painful journey and I'd be happy to lend support |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Michelle Reynolds Scottsdale, AZ |
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Dominic |
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After Treatment |
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click a photo to enlarge
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| Child's Symptoms: |
Speech Delayed, lack of verbal communication, lack of social skills, lack of physical affection, ear infections, GERD |
| Formal Diagnosis: |
At first it was just speech delay, then GERDm then High Functioning Autism |
| Cause: |
Vaccines |
| Helpful Therapies: |
KST therapy, GF CF diet, supplements |
| What Happened? |
A dear friend gave me the book Mother Warriors which lead me to this website. I was impressed to see a check list of items to try with Dominic. No doctor has been so organized or willing to share ideas. We started the GFCF diet in Ocotber 2008. It was miraculous! By Christmas he was singing Christmas Carols-he had never sand before!!! |
I would like to tell
Doctors ... |
Keep asking questions and support parents. |
I would like to tell other
families ... |
YOU ARE NOT ALONE! And don't let any doctor make you think you are crazy. Do your research and try things that seem odd-they just might work. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Gowri Visweswaran Herndon, VA |
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| Child's Symptoms: |
Delayed speech, stimming, difficulty with social skills, anxiety, difficulty with motor skills. |
| Formal Diagnosis: |
PDD-NOS |
| Cause: |
Vaccines and possible environmental factors. |
| Helpful Therapies: |
All of the above, hard to tell since we did them all at the same time or several simultaneously. |
| What Happened? |
My son was diagnosed at age 2 and I took immediate steps to research and do everything that we could safely do to enable him to recover. |
I would like to tell
Doctors ... |
Please keep an open mind to the possibility of vaccine damage in kids whose families have auto immune disorders. |
I would like to tell other
families ... |
Please do not give up hope and try everything that can be done safely. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Kelly Greenberg Las Vegas, NV |
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Benny |
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| Before Autism |
With Autism |
After Treatment |
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| Child's Symptoms: |
Echolaic, sensory issues, head banging, no real form of communication, no fear, seizures, extremely hyperactive, unaware of surroundings |
| Formal Diagnosis: |
classic autism "significantly affected" as the neurologist told us |
| Cause: |
I had a silver filling removed one month before I conceived my son. Maybe a genetic inability to detoxify. Way too many toxic vaccines. Living in a toxic world. In my mind, Autism = Toxicity (Except for very few genetic cases) |
| Helpful Therapies: |
Diet, MB-12, Chelation (in that order) |
| What Happened? |
As an infant we noticed some interesting behaviors, (posturing as my mom the OT calls it), and he was freakishly strong and hyper. When he learned to walk it was on his toes and we thought maybe we let him play in the walker too long. He kinda went right to running and would go into walls and laugh, even if he got hurt. We put up baby gates all over the house to contain him so he wouldn't get injured, and we stripped his bedroom down to just a mattress and some stuffed animals because he would injure himself on anything. Sometimes those injuries brought on seizures. If I didn't read "One Fish, Two Fish" by Dr. Suess over and over again until he fell asleep, he would beat his face bloody on the baby gate. His behaviors got so scary, I took him (at my mom's suggestion) to an Early Childhood Intervention, where he had significant delays. He was functioning at about a 12 month old level and he was a little over two and a half. They suggested a formal diagnosis because they were not allowed to give one, so the next stop was the neurologist. He told us yes it was autism, and he was significantly affected. I wasn't prepared for this, because most people think of an autistic kid as the quiet one isolated in a corner. My son was more like a hyper caveman. He did repeat movie lines, so I thought his language was fine, but it doesn't really count if they can't use it to communicate. He couldn't even answer yes or no. So after listening to the neurologist, and a family friend who was a doctor tell me that the "diet" was dangerous and unfounded I decided to read "Mother Warriors". While reading the book, I thought about all the mothers describing similar problems, seizures and bowel problems and some throwing up. I remembered my days when I used to work for a vet and a person would come in with a dog or cat with these symptoms, and the first thing we would think of is poisoning. From then on I decided I would go to Generation Rescue and research as much as I could about this. I decided to try the diet and a few supplements they list for when you start out, like Cod liver oil, and multivitamin. The first day of the diet all hell broke loose. My son had bad tantrums, broke things, stimmed, and seemed to get way worse. I thought I broke him worse than he already was. We stopped after 24 hours, but tried again 2 weeks later and after 3 or 4 days of hell, I remember sitting with him and playing with letters. He looked in my eyes and I smiled, and then he smiled back. I cried because this was the first time he ever did that. The diet lifted the fog and my son started absorbing everything in fast forward. Emotion, colors, recognizing people, answering his name, and just the ability to learn. Four months into the diet we got a DAN doctor, and my son had another evaluation by the school district. He was now age appropriate for a three year old! He still had some behavioral issues, but went from 12 month skills to 36 month skills in four months. The DAN doctor started his protocol, and the MB-12 shots had a good effect on my son. My son was learning, but the shots got his brain faster or firing on all engines. We supplemented with vitamins, found he had mercury toxicity, yeast issues, bacterial overgrowth, and treated all these. We did transdermal chelation with Dr. Radoff, and removed a great deal of mercury. Today you would have to be a trained expert to know my son is or was autistic. He seems a little ADHD now. Just some behaviors that need smoothing out. I explain things to him probably more than I did my daughter, but I want to make sure he is understanding everything (overprotective mom). I can't thank Jenny enough for being the beacon of hope. I wouldn't have tried the diet or any of this if she hadn't tried it first. |
I would like to tell
Doctors ... |
Know each child as an individual. Take the time to explain things to us in detail. Nobody knows a child like their momma. |
I would like to tell other
families ... |
Don't expect friends or relatives to understand what you are going through. When your child exhausts you and wears on your last nerve, remember autism is even tougher on them. Before you make any decisions about your child do your research. Above all have faith. I know autism is treatable, children are recovering, and my son is one of them. |
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Contact this Rescue Angel View Our Vaccine Injury Details |
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Karen and Paul Columbus Medford, NJ |
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| Child's Symptoms: |
Stimming, could not be soothed or held, eating issues, gross motor delays, sick allot, speech delays, poor social skills |
| Formal Diagnosis: |
PDD(NOS) |
| Cause: |
combo...I had flu shot 6months preg. and his hep b shot in hosp after he was born |
| Helpful Therapies: |
ALL! |
I would like to tell
Doctors ... |
Thank you for giving me hope and help in providing a path toward my child's recovery. The essance of life is relationships... friends, family, future loves and for my son to be able to connect with us now as a typical, happy, social wonderful kid is the best gift ever! I didn't know there was hope for that until I found DAN doctors! I am grateful forever! |
I would like to tell other
families ... |
ask for help as soon as you notice things may not be right, nomatter what anyone tells you. |
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Contact this Rescue Angel |
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