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PDD Recovery Story

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First of all, for those who don't know our background, here's a briefing. My son, Christian, is 5, and has PDDNOS. He has speech delays, sensory dysfunction, aggressive behaviors, obsessive behaviors, gut dysfunction, food intolerances, hypothyroidism... does any of this sound familiar? :)

He was diagnosed in May 2001. I was on the ball immediately, and got Christian as many therapies as I knew of at the time: occupational, speech, and wraparound. His former wraparound agency brought him to a point, and then, his progress just kind of "stopped." OT and ST were coming along slowly, but the play therapy *alone* only brought him so far. Some days, his TSS's would just look at me and say "I just don't know what else to do with him." I was told that "Christian just needs time to get past this aggressive stage."

In Jan. 2002, Christian's diet became more self-limiting than ever before. Chicken nuggets (had to be the Tyson nuggets in the purple labeled box, or forget it!), applesauce, Pizza Hut cheese breadsticks, and grilled cheese, washed down with apple juice or 3 glasses of milk, were the foods that his diet consisted of. I remember many afternoon TSS sessions where Christian asked for cheese sandwiches every 30 minutes. She couldn't get any work done, because he constantly asked for "baby cheese", as he affectionately called his drug of choice. In OT and ST, we incorporated feeding goals, and getting Christian to try new foods was like pulling teeth. I believe the Children's Institute has some videotape of Christian, strapped in a Rifton chair, screaming his head off, as we attempted to give him one bite of a vegetable.

Sensory tolerance was horrifying. He shrieked when we cut his hair, brushed his hair, used the Deep Pressure Protocol, and swung. ST didn't come along well back then. We knew the speech was in him, but he was too out of control to let those words out. I remember a doctor's visit where the pediatrician needed to look in his ear, and I had to hold him in my lap. Two doctors had to try to hold him down. Christian whacked me in my face and caused a nose bleed. Christian wasn't the only one who left the office in tears that day. I left with an ice pack to accompany my crying jag. I guess you see where this is going.

Despite everyone's efforts, life spun out of control for us. He made progress, and we could, once in a while, see bits and pieces of the little boy hidden inside of Christian. Behind the autistic wall of anger and discomfort, a smart, delightful little boy was waiting to come out. I was desperate to do the right thing for Christian. But... how was I supposed to do that? Our former wrap agency said "just wait it out." But, that was NOT satisfactory to me.

In March 2002, it was suggested to me to switch to the Wesley Institute. I was told that they had much more experience with ASDs and had TSSs who were very well trained. As difficult as it was to say goodbye to people we had grown attached to, we decided to make the switch.

At the same time, I had started researching other options, specifically, the GFCF diet. I read the article written by Karyn Seroussi back in February 2000. I highly recommend this article to any parent of an ASD or PDD child. When I read the article, I felt like I was reading about Christian. I remember springing up from my chair after printing the article, and thrusting it into the hands of my (then) fiance. After reading it over twice, considering Christian's diet and behaviors, he said "I think you need to look into this."

I consulted one of Christian's doctors, who was very supportive, understanding, open-minded, and knew of the diet's benefits. We did some testing. and found Christian not only to be sensitive to gluten and casein, but he was also Vitamin A deficient. Immediately, we ordered a multi-vitamin, called Super Nu Thera. After the testing, I knew what I had to do... but how in the world was I going to do it? The doctor and my fiance were the only two that supported me at the time.

We were parting ways with the former wraparound agency at the same time that we started the GFCF diet. The BSC slowly began to have faith in what I was doing. She had read the article by Seroussi. The other TSSs laughed and said "You're telling me taking away bread and milk can cure autism? Come on Cathy, you're brighter than this." My defense was "Maybe, but I owe it to my son to try." My own parents thought I was crazy. If I had a dollar for every time they said I was starving my child and for every time they threatened CYF on me for abusing and malnourishing my son, I'd have enough money to send my kid to private school.

The diet was SO damn tough at first. Christian balked at everything I gave him. Some days I was desperate enough to feed him potato chips all day, just to keep him away from gluten and casein. If my parents offered him a leftover breadstick, I'd whack it out of their hands, screaming "NO! You're hurting him! Can't you see that?" Unfortunately, many grandparents (and parents) suffer from the "Food=Love" syndrome.

There were days I so badly wanted to give up. I hated putting in so much effort. It was so much easier to just go to work, leave the kid with my folks and the TSSs, and just walk away. Eventually, I had to quit my job (actually I was forced out), because they couldn't handle my inflexible schedule anymore. That's when I woke up and realized, that if Christian is ever going to get better, I have to stop worrying about my convenience, and start worrying more about my son's recovery from a frightening disorder. I had to become a researcher, a therapist, and an advocate. And I had no time to waste.

By April, Christian had been on the diet for about 3 weeks. The withdrawal period was hell. It was like watching a heroin addict. But soon, things began to change. As things began to look up, Wesley stepped in, and started strict behavioral modification, ABA and discrete trials. I had researched these therapies, and was kind of skeptical at the time. I thought, "You're going to get my aggressive child who bangs himself on walls to appreciate a sticker chart?" HA!

Within a few more weeks of GFCF, and a few more weeks of intensive ABA, we were seeing a HUGE world of difference. He began tolerating new foods. He began wearing clothes other than white undertshirts and cotton pants (he went through this for 8 MONTHS). He began to tolerate sensory play, like the rice bin, the swings, and bean bags to name a few. Speech began to burst out. He was labeling items so quickly that I couldn't keep up with him. His 200 word vocabulary, within a short amount of time, tripled. More words came out every day. Within a few more months came sentences. He began to interact with other children at school, whereas before he simply ran away from them. He began to show an interest in toys besides magnetic letters that he'd line up day and night. Stimming decreased. He even developed a sense of humor.

Perhaps most importantly, Christian's chronic constipation seemed cured. He had been on Miralax, an addictive as all h*ll laxative, for a year and a half. His GI doctor was amazed and puzzled when I said "I put him on a wheat and dairy free diet, and he no longer needs Miralax. In fact he doesn't need laxatives at all." He really didn't like the fact that a parent with only an associates degree pointed out something that he couldn't figure out in a year and a half. He released us from his care. Well, good riddance is what I have to say to that. He personifies the term "quack."

We introduced many things over this past year, like multi vitamins, adjusted his thyroid medication, and other supplements. Many things were a matter of trial and error. We went through some regression this summer, but by fall had gotten back on track. I went to doctor after doctor. I even took my son to a homeopath, though the results of the doctor's treatments were tragic. This person claimed to be a DAN doctor and though some DAN doc's are legit, many others simply want your money. Now, Christian had dietary infractions before that caused regressions (specifically eczema, constipation and more ASD style behaviors), this one took the cake. He started a probiotic that at the time, I figured was safe. Unfortunately, it had whey in it. Christian suffered three months of regressions. About 6 weeks ago, I ended up taking Christian to the hospital, and then performed a course of 9 enemas to treat Christian for a bowel impaction. In the past month, Christian became 100% GFCF again. We also began Magnesium Citrate. Not only are the BMs normal, but Christian accomplished a feat that we never thought was possible. He became toilet trained.

Today, Christian is a high functioning child. Since the implementation of these biomedical interventions, we have seen my son's capabilities. He counts to 100, backwards and forwards, sight reads, counts money, knows basic time concepts, patterns, knows colors and complex shapes (like nonagon and heptagon... do you all even know what those are ;P ?) to name just a few skills. His cognitive abilities continue to astound us. Behaviors and social goals are still a major concern, but now, we have hope. Speech is only delayed a little over a year now. At a recent evaluation, I was told that Christian will stay PDDNOS for probably another year, and then he may move into Asperger's territory. And, if he continues his progression at the rate he is, he may move into only ADHD. God knows I pray for the day when I have a child whose only quirks are spacing out and getting easily ticked off.

I can't guarantee how far Christian will come, but I have such faith. It has taken so much effort, but the exhaustion is worth every minute. Every time my child tells one of his jokes and giggles with me, giving me a hug, telling me he loves me as he looks into my eyes, I know I'm doing the right thing. Biomedical, AND behavioral interventions, with a good school, and OT and ST, I believe, are all EQUALLY important. You have to choose what your child needs, and then decrease or intensify those therapies accordingly.

There's so much information out there, and it can be hard to sort through. It's harder when your doctor tells you "That's all a bunch of hullabaloo, get over it, your little ASD child's never going to get better." That's when you get off your butt and find someone who will listen. Get good therapists who never give up on your child or your family.

Dedication and determination are the keys to success. Early interventions, whether it's the diet, or ABA, are so vital. If you are a parent of a newly diagnosed child, and you are considering whether or not to try certain interventions, just do your homework.Learn all you can, because knowledge is power.

I am so proud of my son, and quite frankly, I'm proud of myself, for having the courage and strength to keep on truckin'. Christian's developmental pediatrician summed up our progress in two simple words at the last appointment...

He said... "You're winning."

[my thanks to Cathy for allowing me to use her son's story on my site]

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