Tony was fairly typical as a baby. His only health problems were chronic bowel problems, chronic ear infections, eczema, asthma and environmental & food allergies. Looking at that sentence now, I just want to scream as those are all problems with the immune system but back then, I knew no better. Each of those problems were dismissed by his doctors as normal.
He also had torticollis which made him only able to turn his head one direction and affected his ability to walk. He was in OT from 9 months to 1 year to help him learn to move his body well enough to walk. He actually had great movement but his spine was messed up from the twisted neck and walking was a struggle at a certain point. I really never thought it was bad myself but our base doctor was insistent that he needed therapy and we complied. We had a very nice Major who worked with Tony every week and gave me home therapy exercises until he "graduated". It was actually a good experience for Tony & I.
About the time he graduated, his food allergies were so severe that I had to quit my job to keep him home. I was secretly glad to have a reason to bring him home as I never wanted to return to work after he was born; but it was difficult to know the reason I came home was because he was no longer safe in public settings. I remember very distinctly the day I knew it was too dangerous. He went to the military daycare (which is where I worked) and you need to know that DOD childcare is flawless in their ability to keep germs and food and all things safe. The room was practically sterilized twice a day and kids foods were kept away from each others, toys that were played with were not reused until being cleaned, I mean it was as safe as they could be. BUT that day, I was visiting him on my lunch break and he was eating some baby food, but his neighbor in the next highchair over had macaroni & cheese. Tony, being a toddler, did what toddlers do. He grabbed his neighbors mac & cheese. He didn't even get any in his mouth before I had grabbed his hand and washed him off. But he went into anaphylactic shock (this happened often so I knew what was going on). Just from touching the mac & cheese. That's when we realized why he kept going into anaphylactic shock randomly...he was allergic to touching his allergens! The director of the childcare center told me she really didn't see how to keep him safe (and I didn't either) and that I should put him in a bubble. (That was a less than stellar comment on her part, I might add) So I quit and took Tony home.
I remember that first day home. We lived on base and walked to work every day so I just took him home in the stroller and we hung out on the playground next to our housing unit. The day was sunny & cool; a beautiful Texas day. We finally ended up swinging and I was holding him in my lap, face to me. He feel asleep and I just sat there swinging and holding him and thinking how wonderful life would be now that I could stay home with my baby.
Life was wonderful for awhile. We had another baby soon after and Tony was a great big brother. He just loved Grace and thought she was the coolest play toy ever. They had a special bond that was so precious to see. She very quickly showed signs of severe food allergies too but she also very quickly regressed into autism so she was a danger to herself because she could not care for herself or speak up to say "no thank you" when offered food. She was not out of my sight often but she did go to church nursery and she couldn't remember not to accept food from others. So Tony, very responsible at that age and being an A type little dude, took responsibility for her. If Grace went to nursery, so did Tony. Very quickly Tony became Grace's mouthpiece and protector. He saw her have to get an epipen injection many times and he understood the seriousness of his self-appointed job.
As they grew, Tony & Grace maintained that bond and always had each other for playmates. At that age, Tony was very social but Grace was not at all. At activities, kids would look at their food and make faces. Well meaning adults would raise their eyebrows at their food and make comments. But mostly people understood it was life and death and the amount of food allergies they had necessitated the "weird" foods. We got very good at wiping down surfaces to EVERYTHING the kids would touch. We should have taken out stock in the Huggies wipe company because, Baby we would be millionaires!! But anyway, we still strove to "look" normalish so we started allowing the kids to live off of Tyson chicken nuggets, oreos and spiderman pop tarts.
However not everyone understood (or cared) that it was life and death. At one point I had to pull Tony out of church nursery because the nursery workers would keep him caged up in a playpen while the other kids decorated the room in cheez-its. I mean literally covered the room. We would go in to pick him up and every child was orange crumbs and the floor was orange. Well a social toddler in a playpen is a great attraction to others so the little people would always come over to play with Tony, touching him, touching his toys, and we would spend the afternoon in the ER, hoping he wouldn't die.
This was his life for years. Any social situation brought danger. While we did leave that horrible church, we still had to deal with the fact that each exposure he had there, had upset his immune system even further. The amount of foods he became allergic to was astronomical. His immune system was on hyper alert every second of the day. If you know biology, you know that stresses out the adrenals big time. Although life saving and necessary, epinephrine shots also stress the adrenals. His body started crashing little by little and by the time he was four, he was hospitalized for complications from strep throat. When he was released, he was a different boy.
Tony never lost language. I say that because his symptoms will make you wonder how I didn't see autism any sooner. Or even how the doctors didn't see it. I firmly believe it was because he could still talk. He was always the little conversationalist and when a doctor sees your child for 2 minutes and all they can talk about is dinosaurs, it doesn't set off alarm bells. His obsessions were obvious to us but not so obvious to the people that didn't live with us. He could still socialize to some degree but he went from "normal" play to screaming and crazy hyper. He started sweating buckets at night. I'm talking, his sheets were drenched and his clothes were dripping wet when he got up. He was not in a hot room, not wearing hot clothes, this was just the way it became for him. He started snoring and his food allergies, perservations, obsessions and wildness got more pronounced. While he withdrew further and further into himself, it was very subtle, and we ignored a lot of the signs because he continued to play with Grace.
Their playing had changed though. Instead of flitting from toy to toy, doing normal kid things, they would sit on the couch and obsessively watch Blue's Clue's (I can still hear Steve & Blue singing in my head!), or play for hours with dinosaurs (nothing wrong with that) and little by little, they stopped interacting with me. Daddy was overseas probably 1/2 of the year so it wasn't easy for him to spot things and I was super stressed over the allergy situation and, well honestly I was rather self absorbed so I missed signs too. Because the allergies were so severe, our social life dwindled down ALOT and I stopped seeing other kids Tony's age and couldn't compare and see the oddities. At the age where it probably would be have started to "click" for me, the military moved us and I had to make all new friends.
Let me tell you, when you have kids with allergies to TOUCHING common things, making friends doesn't happen easily. For us to go out in public used to take an enormous amount of courage. Imagine that anything your child touches could kill them. And imagine that it's stuff you can't see that would do the most damage. Finding a new church was a difficult and daunting task. So Daddy and I decided I would go by myself first and we would see how the people of the church were. If they had a heart for special needs, I would speak to the nursery workers to see what they were willing to do to keep the kids safe. If they were put out or snotty in any way, we did not go back to that church. We went through quite a few churches I'm sad to say. But we did occasionally find a church where they were willing to work with us and we eventually found a place to worship.
Once we found a church home, it took some time to accustom people to our needs. We can't help our issues so we just asked people to make small accommodations for the kids safety. Most did of course but it still took Daddy & I some time to work up our courage to trust people. It took even longer for me to work up my courage to let my kids play with other kids. Always in the back of my mind is the knowledge that if a child Tony is playing with just had milk and donuts before playtime, it could kill Tony. I know very few kids who are neat eaters and therefore most of the little kids around us have food of some sort on their clothing. A simple thing like sharing a toy that had been in someone else mouth or on their table during meal time could kill my children. Those are the crazy things I have to think about every second we're in public. At that time, I was still timid and often didn't want to speak up so I just avoided social situations as much as possible.
Fortunately I made some friends who helped me get over that but still, for a time, we were very isolated socially.
By the time I started being more free and comfortable in the groups who knew our needs, I started to notice some really weird things about Tony. He was afraid ALOT. Yes, a child who can die from touching things would naturally have a more fearful personality. But he had not been that way before and he was Grace's caretaker! He had known for years about these issues but suddenly he was afraid to talk to people. He started being unable to talk (selective mutism) in public. He was also terribly underweight compared to all his age mates. He did not know how to be social with either adults or children. He was just wild and crazy unless he was frozen in fear. And he stayed that way because I didn't know what to do.
Finally a friend recognized that my newborn (Kate) reacted badly to foods that fed yeast. She herself had candidasis and encouraged me to see her doctor. I went out of desperation. At this point, Tony was 5 and I had been assured by all the experts that he would outgrow his allergies by then. Not only had he not outgrown them, he had more than when he was 2. Since Kate and Grace both had allergies, I went hoping he would tell me something that would help. I received alot of information that day and started tweaking my own diet. That was no fun but was necessary because I was breastfeeding the baby. Her eczema went away when I cut out all things that feed yeast (dairy, gluten, sugar, yeast). So I started messing with the big kids diets to see what would happen. I kept a journal of everyones food intake and behavior. VERY quickly, the connection to their food and their behavior became crystal clear.
I kept going back to this doctor who thought in a whole new way from the ones I knew. During one appointment, he did diagnose Tony with autism. I remember being stunned and relieved all at one time because I had already known he had it and the verification helped, but you're not really ready for that dx when it hits your ears and heart. I also remember his nutritional health coach looking me in the eye after he left the room and saying: "It doesn't have to be permanent". WHAT??? Autism can't possibly be fixed right?? Well that comment lite a fire under me. I had already started learning a little about toxicity from studying candidasis so I started collecting books and websites that could help me. During that time, I took Tony to the big medical university here where all the autism kids go. They used the CARS and when we came back for our evaluation, they told me he missed a diagnosis by 3 points. They also knew that at this point, I had tweaked his diet and seen improvements, so they told me to keep doing what I was doing because based on his history before treatments, he did indeed have aspergers (although at that point they just called it high functioning autism).
So what did I see with dietary intervention?? Well here's a quick rundown:
Gluten removal - quit that horrible screaming and screeching, stopped wetting the bed, his excessive night sweating stopped (this sweating was so severe that his clothes were dripping from sweat when he woke up), his asthma went away completely!
Sugar removal - eye contact came back, stimming stopped, he calmed down considerably.
Adding fermented (probiotic) foods - bowel problems resolved, stopped craving certain foods, major social gains, eczema went away.
We did a ton of other interventions as well. Diet was just the beginning.
Chiropractic care - we did this 2x a week during chelation to keep the detoxification pathways open. We continue to receive adjustments to maintain health. This is one thing I think everyone needs to do on a regular basis.
Oral chelation - we had testing done and it showed high levels of toxic metals in everyone's body and chelation is the best way of getting it out. Metal toxicity will keep the brain & immune system from functioning. (Most people are aware of the danger lead poisoning can do to the brain - all toxic metals will do that). We did NOT do this until we had worked on their guts though as chelation can be very hard on the body and often stirs up yeast in a fierce way. We had a doctor oversee our chelation and we supplemented heavily in those days to make sure we did not deplete the body of needed minerals and nutrients. We went very slowly and used the safest method we could find.
Occupational Therapy - this was needed to help the kids regain their lost skills. Tony, for instance, had motor and trunk rotation problems. He could not look back without turning his whole body. A child of 6 should have been able to rotate his trunk but he could not. That was only one of his many physical problems that were remediated by OT. His sensory seeking needs were met here and we learned how to help him meet his sensory needs. At one point, he would only go out in public in long sleeves and could not touch dirt without great distress. He is SO over that! :)
Supplementation - during the early years of recovery, we ran a huge amount of labs. We saw many problems the kids had internally that we could resolve with vitamin & nutritional supplements. As you can imagine, a child on a severely restricted diet like Tony's had many nutritional deficiencies. (*Hint: processed foods hurt the body, they don't do it any good!) We found he had a parasite in his gut that was eating all his nutrition (at 9 years old he was 45 lbs) so we killed that sucker and he started gaining weight again.
Neurofeedback - this was absolutely vital for Tony. Although he was physically recovered from all the other interventions, he still had that heart-stopping anxiety. He was just unable to function out in public if someone spoke to him. After just three sessions of this, he lost that anxiety. It's wonderful to see him able to function appropriately in public!! He has learned the difference between necessary caution and all-out terror. It's good. :)
It took about a year for him to look recovered to the untrained eye (who didn't see him for a very long period of time) and much longer to get complete recovery (meaning no one could tell he used to have autism even after interacting with him for a lengthy time). This is not a typical timeframe for a more severely affected child. Please also know that recovery means they do not look or act like they have autism. It does not mean they have no more medical issues. He has only recently been able to pick up social cues from others and the food allergies persist.
There is so much more that I didn't include but I'm sure you're all going cross-eyed from the information overload. So there is Tony's story... in a very large nutshell.
Medical experts say it's not possible to recover autism. We have living proof in the form of three children, that it IS possible. In my blog you will find recovery stories, along with information regarding health that I have learned over the years. And sometimes just snippets of life to give hope that yes, life can be normal after the hard work is done.
Sit back, enjoy, and be hopeful! RECOVERY HAPPENS!
**Kids names have been changed to protect the innocent and naughty alike. ;)
**Kids names have been changed to protect the innocent and naughty alike. ;)