You Are What You Eat....We'll See

Well, I caught one....a dream that is. Just one but thank God because I really wasn't sure how I was going to keep going if I didn't sleep for at least four consecutive hours. Cams slept from eleven to six thirty Monday night and it was fabulous! I felt like a new woman Tuesday morning! Tuesday evening however she was back to her old shenanigans and last night too, so not really sure when my eyelids will have that much downtime again. It's so frustrating because I have no idea what was different about Monday night than the other nights. She didn't eat anything different, do anything different, it was just a typical day. I keep looking back to see if I can pinpoint any little thing that may have been the reason she slept so well, but so far, I got nothin'!
But anyway, I really wanted to talk about something else. Last Friday Brad and I attended the National Autism Conference at the Tradewinds Resort on St. Pete Beach. The conference was from Thursday to Sunday with various speakers scheduled each day. There were several presenters on the agenda including Dr. Bradstreet, a nationally recognized DAN! doctor. For those of you who aren't familiar with DAN! I'll explain. It stands for Defeat Autism Now and is based on the belief that biomedical medical intervention is the route to take when treating Autism. The belief is that by following a certain diet, adding various supplements and spending time in a hyperbaric chamber many of the "symptoms" of Autism can be greatly alleviated.
I have heard about DAN! for years, but have never looked into as an option for us, number one because of the expense and number two because is seemed incredibly involved. And it is.
Being a parent, as we all know, is a 24-7 deal. There's never any time off, or end of the work day. We are constantly on and between doing the laundry, helping with homework, grocery shopping, housecleaning, picking up, dropping off, bathing, feeding, etc. you are lucky if you yourself have a shower and a meal. If my kids eat a dinner that I didn't pick up at at a drive thru and are in bed by eight o'clock, then I consider it a highly successful day. So when I first looked into the DAN! protocol and saw that diet played a huge part in the treatment I immediately thought "No way!" We have been down the diet road before, back when Cams was about three. I was still a mother of just two and a relatively new resident of Autismville. I was desperate for a way to "fix" my daughter and after doing much research online decided I would try the GFCF diet. Gluten free Casein free is a diet that basically removes anything that tastes good or is easy to find  on the basis that the reason some Autistic kids have Autistic behaviors and tendencies is because they have an allergy to gluten and casein, which in case you didn't know is contained in just about everything! I was seriously motivated and immediately ordered the GFCF diet and all it's accessories, ecstatic that I had found a way to cure Camryn.
About seven days later when the book arrived and I started reading down the list of foods Camryn could no longer eat I wondered what in the hell I was thinking! I knew that bread was going to be a no-no, but virutally everything on the "bad" list could have been found in my pantry and refrigerator at that very minute. I was overwhelmed to say the least, but still hellbound to fix Cams, so I threw out the bread and milk and cheese and cereal and yogurt and chicken nuggets and crackers and pasta and pretty much everything else in our house and replaced it with Boars Head lunch meat, Quinoa "pasta", a very dense and expensive loaf of something called bread, but it wasn't and many other strange supposedly edibles that I had never heard of. If we went out to eat it was always " Hamburger, plain with steamed broccoli, no butter" and Cams ate it, because unlike a lot of other kids on the spectrum, Cams will eat just about anything. It was a very intense intervention because until you remove everyday food from your diet you don't realize how much a part of your existence it is. And as a mom of two kids under six with a husband who worked insane hours, I relied very heavily on things that were convenient. Happy meals?See ya! Pizza? Miss you old friend! Pop tart? I don't think so! Uuugghhh! It was hard!
Now if I was a different type of person, the type who always has a sprig of fresh herbs in the crisper in case I want to make homeade vinegarette that night or  whole sticks of cinnamon in the spice rack just waiting to be shaved into a brew of hot cider, then maybe this whole GFCF thing wouldn't  have been quite so hard. But I do not prepare homemade anything and I certainly wasn't going to start at thirty with a busy five year old and a three year old on the spectrum. Somehow, we stuck it out for about six months with Cams on the diet. Did we notice a change? Yes, but a slight one. She didn't seem as aggressive towards other kids,but I still couldn't let her wander in a toddler crowd without me being right beside her, because she still had incidences of biting and pinching. If we had kept her on the diet longer would it have gotten better? Maybe,but we would never know because by that time I was pregnant with Natalie, sick as a street dog and popping nuggets in the microwave like nobody's business. I felt like a failure.
So here we are four years and several medications later and the only thing that has changed about Cams aggression is the size of her weapons. Her fingers are bigger and stronger and her teeth have a much higher PSI. Things are bad. She is assaulting her sisters at home and we are getting calls every week from school. Natalie doesn't even want to walk past Cams room to get to her own for fear Camryn will hurt her. Mason is trying to be a good sister and daughter and offers to go into Camryns room while she is screaming and throwing things to try and calm her down so I can prepare dinner only to come out seconds later crying because Camryn hurt her. It breaks my heart!
In desperation, Brad and I attended the NAC hoping like hell we would come across some sort of treatment that would improve all of our's quality of life. There were aisles of vendors, everything from specially designed carseats to tracking devices if your child wanders off, both of which caught our attention, as Camryn frequently unbuckles her seatbelt while we're driving and will follow a dog miles and miles, with no worry of getting lost or abducted. The speakers that day were a neuropsychologist, a woman featured on HBO for her ability to teach Autistic kids to communicate, a speaker on Autism and puberty and Dr. Bradstreet's presentation on biomedical interventions. We made it to the neuropsychologist and Dr. Bradstreet. After hearing everything he had to say and looking at the research to back it up, Brad and I made a decision to try a natural approach one more time. It all makes sense and even though it doesn't work for every child, what if Cam was one of the kids it did work for? Back at the vendor section we stopped at several booths selling enzymes and vitamins. Dr. Bradstreet spoke of the importance of these and also a substance called secretin. In fact, from what Brad and I got out of it, secretin was one of the key components of his treatment plan.We were definitely going to do it! We left feeling inspired and as soon as we got home I looked online for the Feingold diet and ordered the literature.This diet is a bit different from the GFCF in that is focuses mainly on removing artificial dyes, preservatives and nitrates. It seems almost as strict, but maybe a tad more do-able with young kids. Supposedly the results are pretty significant and from what I have read, fast, with some reporting visible changes in as little as four days. I am hopeful,but cautious.
Along with implementing this diet, we have decided to take Camryn off the medicine Risperidone, which her neurologist prescribed a year ago for her aggression.  We have never been thrilled with the results and after talking with a friend of mine the other night and learning that her daughter was also put on this drug and had horrible side effects that included insomnia,urinating all over the floor and extreme hyperness, we decided right then to get this drug out of Cams system.
So, any day now the diet should arrive. I am excited but also fearful.What if it's too big of a comittment at this stage of our life? What if it's too overwhelming? What if it doesn't work? What if it does?
I hope in a month I will write a blog giving my testimony to the miraculous benefits of the Feingold diet. I hope that once the Risperidone exits Cams body she will be different, in a good way. I hope that in six months my kids,all three of them, will sit at the beach together and build sandcastles and bury each other in the sand, the way sisters do. But most of all I hope that if none of these things happen, I can look at my daughter, in all her Autistic splendor and know that I tried everything I knew to make her better,only to see that ironically she was the one who made me better, and did it just by being the way she is.