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Recovery Story: Quinn

Recovery_storiesQuinn’s Journey
Presented By Generation Rescue

Two and a half years ago I read the testimonials on this website and wept. I still do when I need a good cry. 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. I hope that it will help you.

I had a normal pregnancy and delivery. I had a flu shot in the second trimester and a high fever in the third, but nothing extraordinary. Quinn was mildly jaundiced at birth and a big baby (10 pounds, and no, it wasn’t a c-section). I nursed him for 3 months, but couldn’t keep it up once I went back to work. His development was all pretty normal for the first year, and he started stimming around 12-15 months, after his MMR.

Quinn was diagnosed 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 was convinced 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. I vividly recall the first conversation I had with my husband about this. I was so shocked by the idea that milk could be bad for my son. So I dug deep on the internet and decided that, though I was skeptical, it was certainly worth exploring.

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 GF/CF 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, brought it some with us and baked some on the road). After a year of rotating the home-made bread, labs still show big gut issues, and we’ve cut out all bread, starches and sugars. This summer we started the Specific Carbohydrate Diet (SCD). The whole family is doing the diet with good results. Now I think more about the foods we CAN eat (a variety of meats, vegetables and fruits in moderation) rather than thinking about what we’ve cut out of our lives. I make EVERYTHING we eat from scratch, and my new favorite appliance is my crock pot.

For Quinn, traditional therapies have helped a lot. The traditional therapies include play therapy, behavioral therapy (Applied Behavioral Analysis using Discrete Trial Training), Speech Therapy and Occupational Therapy. These therapies have been intensive totaling 30-45 hours per week. Quinn began preschool at age 2 ½ in a typical preschool with the support of his ABA therapists as his inclusion classroom aide.

The first 18 months of biomedical interventions we saw slow and steady progress, but the past year has been extraordinary. We’ve been doing DAN! protocols for chelation and nutritional supplementation based on his laboratory tests. Laboratory testing has revealed many food allergies, nutritional imbalances and medical problems that we are working to remedy. The biomedical therapies have included vitamin, mineral and essential fatty acid supplementation (most at RDA levels, but some at therapeutic high doses based on need as shown on lab results). We have used anti-fungal medications including Diflucan, Sporonox, Lamicil and Nystatin, as well as natural anti-yeast remedies including Candex, saccharomyces boulardii and high doses of probiotics. We have used natural anti-bacterial remedies (Biociden) for bacterial overgrowth and recently had a short course of antibiotics to treat an intestinal bacterial infection. We have used several different chelating agents to remove toxic metals including TD-DMPS, TD-DMSA and oral DMSA along with ALA, and the natural zeolite NCD. Last November his liver enzymes were slightly elevated and we decided to take a break from chelation. At that time we increased liver support by adding Liver Life and Herbathione. Lab results from December indicated that he continued to have difficulty absorbing nutrients due to gut inflammation and has high oxidative stress and neurological inflammation.

In January we started new therapies with a chiropractor called Network Spinal Analysis (NSA) and Somato Respiratory Integration (SRI). NSA involves gentle touches along the spinal column to direct energy flow in they body to promote healing. SRI is based on breathing techniques that support healing. We saw big gains in his speech in those first few months of NSA/SRI. In March we started chelation again and did mild HBOT (hyperbaric oxygen therapy). We feel that the mHBOT made a huge difference for him. Lab work reveals that his mineral levels are higher than they’ve ever been because he is now absorbing nutrients. We’re taking another break from chelation and started an anti-viral protocol. After only a few days on Valtrex we saw positive behavioral changes. We are now in our third month of Valtrex therapy, and I believe it is helping him a lot. We’ve seen the most amazing progress in these past nine months, and I feel like it’s exponential. We are currently doing another round of mild HBOT and seeing gains daily. The more we do now, the better he gets.

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. The following spring we had a different clinical psychologist assess him and his therapies to confirm that they were appropriate. The 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 over the past year, and the past nine months in particular. The CARS is broad test does not pinpoint the more subtle social and communication challenges that Quinn still faces, but we have many wonderful experts who work with him every day who know how to fill in those gaps.

Right after his fourth birthday, his speech assessments showed a huge gain. He went from an age equivalent of 2 years 6 months at Christmas to an age equivalent of 3 years 5 months in April (four months later!). We saw another good gain four months later with an age equivalent of 3 years 11 months. He’s only 6 months behind his peers now and still catching up.

Quinn has gone from a two year old with NO receptive or expressive language at all to a four year old 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 is taking 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.

If you’re just starting, hang in there. Keep trying and keep learning. Have faith, and work hard. Your child will get better.

This and other stories of recovery can be found on the Testimonials page at GenerationRescue.

Comments

Melissa

This is amazing, and it literally describes my situation I’m currently facing with my sweet 2.5 year old daughter. She and Quinn have had a very similar developmental journey leading up to the autism diagnosis. We have just gotten her evaluated foR ASD and are in the process of getting her the help she needs (it seems like an eternity waiting) for things to start. I feel like I’m racing the clock to start intensive intervention for her to heal. I have hope that she can recover just as Quinn has, thank you for sharing this and in great DETAIL! I want to try the biomed therapies and nutritional intervention also. I bought BTVC book and I’m looking for a DAN Doctor. It’s been a long few months trying to find the right help. We live in MN and there seems to be very limited availability for a lot of therapies and interventions we need due to high demand for so many kids with ASD (there’s just not enough help to accommodate everyone at once) all the places I’ve called have 6month-2year waiting lists!! It’s the saddest thing ☹️
I have a big job ahead of me to dig and make things happen. I already work in the kitchen all day trying to keep her fed and healthy, but now after reading BTVC I realize that I’m going to live there. It’s a huge burden trying to cook so much and feeling like your life is confined to one thing all day: I realize I’m not alone after reading your story. You did what I thought was near impossible to accomplish! So inspiring to stay strong and positive. Thank you. And also, for listing the therapies and Biomed treatments by name. Now I know what to research and to try for Ava.
I am praying and hoping that my Ava will be totally recovered and healed from her ASD diagnosis no matter the odds or the obstacles she is facing. Thank you again for sharing your son’s story of hope and miracles ♥️

Twyla

Terri -
I have read that there is no test to determine whether a "GFCF" diet (free of casein and gluten) will benefit a particular child. The only way to know is to try it for a few months. (Casein is the protein in milk, and gluten is proteien in grains such as wheat and rye.)

Often those who benefit from the diet are those who really crave gluten and casein. Perhaps this is because when the gluten and casein proteins are incompletely broken down they form peptides which are similar to opiates and may have an addictive affect.

Not everyone who benefits from this diet shows GI symptoms.

You may be interested in reading the book "Unraveling the Mystery of Autism & PDD" by Karen Seroussi.

Some web sites of interest:

www.Autismndi.com –Lisa Lewis and Karen Seroussi provide info on the GFCF diet

www.gfcf.com – support & information for anyone implementing the GFCF diet

www.tacanow.com - TACA web site has a lot of information on the diet.

www.enzymestuff.com – Karen DeFelice’s site providing information on enzymes

When I saw Temple Grandin speak last year, she suggested trying the diet. She said, it's not that hard -- you can have meat, chicken, rice, beans, potatoes, fruits and vegetables. Just give it a try to see whether it seems to make a difference for your child.

Children may have other dietary issues in addition to gluten and casein. People who work with dietary intervention say that you probably need to eliminate soy, as well, since the soy protein is very similar to caseien. In my son's case, we also eliminated corn, since he did not seem to digest it well (kernels passed right through him whole, and made his diarrhea worse. His diarrhea is gone now that he is on the diet and also taking digestive enzymes.)

Kids can take calcium supplements to make up for not getting calcium in milk. Also you can find GFCF rice or potato based "milk" which has calcium in it.

Best of luck!

TERRI

I HAVE A QUESTION.... MY GRANDSON ALSO DRINKS MILK BY THE GALLON AND IS A BIG FAN OF MOST CARBOHYDRATES, ESPECIALLY BREAD. HE HAS NO ABNORMAL GUT SYMPTOMS. HIS BOWELS ARE REGULAR, HE NEVER GETS SICK, HE IS SLIGHLY ANEMIC BECAUSE HE DOES NOT GET ENOUGH PROTEINS BUT HE IS NOW ON PEDISURE TO COMPENSATE FOR THAT. HOW WOULD I KNOW IF THE MILK AND CARBS ARE WORSENING HIS AUTISM? HE HAS MADE WONDERFUL PROGRESS IN THE 14 MONTHS SINCE HE WAS DIAGNOSED AND WE REALLY HAVE NOT CHANGED HIS DIET. I BELIEVE THAT FOR SOME CHILDREN DIET CAN WORSEN THE SYMPTOMS OF AUTISM BUT I DON'T THINK THIS IS SO FOR HIM. IS THERE A SPECEFIC BLOOD TESTS THAT CAN HELP IDENTIFY A DIETARY PROBLEM?

Holly M.

That's what it takes. I'm so happy to hear your story of recovery. Thanks for sharing in such detail.

Twyla

Thank you so much. This is so interesting and inspiring. Congratulations on all that you have done.

It is so great for your story to be out here for all to see -- not only for other parents, but for professionals such as doctors and researchers, who should be paying more attention.

And to those readers who are being paid to monitor so-called "anti-vaccine" web sites: Are you paying attention and learning while you read? The biomedical paradigm of autism is real. Autism is not only about abnormal "wiring" of the brain caused by defective genes.

I am so tired of hearing that the GFCF diet has not been "proven". It may not help everyone, but it has been proven effective in thousands of households around the world.

I wish there were more professionals who could give guidance regarding biomedical -- to help match appropriate treatments with an individual child -- there is often so much hit and miss. You have slogged through the uncertainties, done your own research, found good professionals, and applied yourself with great diligence. This is phenomenal.

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