Decisions

We started another therapy last week.  Another therapy.  OT, PT, speech, social, behavior. The list is rather long for a 7 year old. I have high hopes for this one, as I did for all of them when we started.  We all make decisions that we hope are in the best interest of our kids, and they are difficult to make.  This post is geared toward parents who may be trying to make their own decisions, to review the different paths we have taken, and share our results.  

When we first started this process we thought we were dealing with ADHD, maybe a little sensory integration and perhaps ODD. If you read or hear current media reports, you would think that upon hearing ADHD - parents just give their kids stimulants, and the problem is solved. Let me assure you that the decision to give your kid drugs is never easy. We were not ready to go that road, so we researched and started with diet.

We had read the Fiengold diet, about color additives, sugar, etc. and we had been avoiding those since birth.  Then we read about the GFCF diet, gluten-free casein-free. The idea behind this diet was that the proteins were not being digested properly and getting into the bloodstream and straight to the brain acting like an opiate, causing irritability and aggressive behaviors.  Word was it could take 6 months to a year to really know, but we went for it. Fast forward 2 years.  We are largely gluten free in our house, mainly because it makes me feel better, and we do notice extra irritability with too much wheat in conjunction with other stressors.  We now bake with spelt - an ancient form of wheat with very weak gluten that breaks down very quickly. I make an awesome gluten free bread, which took me about a year to figure out.  The dairy did not seem to be a problem.  We did all the standard allergy tests, with nothing definitive.  We did an alternate delayed sensitivity allergy test - that measured IGG's in the blood.  This came back with extreme sensitivity to any kind of bean: soy, kidney, lima, etc, and peanuts.  I had been doing a lot of cooking with soy, so this was a little bit of a surprise.  Once we took out the beans, including peanuts, we did see results, but not what we thought.  The eczema on her legs and arms cleared up.  She used to scratch her arms and legs so badly they would bleed, and mosquito bites were awful.  Some decisions are easy - when she eats peanuts or soy, she starts scratching her skin.  This is the only concrete decision we have ever made. This test, and the celiac test say she should have no problem with wheat, but still we are not sure.  We are probably healthier for it.  My daughter's condition lends toward obesity, so avoiding carbs is a good thing. We avoid all fast food and read every label.

We also looked into alternative medicines.  We had a chiropractor adjust her spine and tell us she was allergic to metals.  We saw her one time. A natropath did muscle testing - telling us she was sensitive to wheat, sugar, dairy, and eggs (but not beans, prior to the IGG test), and directing us toward supplements (vitamins and minerals) and diet. We lasted 6 months with her, ending when she wanted to 'detox' our 6 year old. Finally we saw a homeopathic doctor who gave us an all-natural alternative to stimulants for treating ADD. I will admit this worked great for about 1 week, and then faded. This Dr. was the one to do the IGG test, so we got one benefit from it.

At this point we went the more traditional Dr. route.  The first psychologist we saw labeled her ADD, ODD, etc with out even meeting her, and recommended a Dr. to prescribe meds. So we went to a licensed psychiatrist and got our scrip for: Focalin, didn't work;  Adderal, didn't work; Intunive, put our kid to sleep during the day, would not sleep at night - end result: disastrous. He recommended Straterra next.  We went to the Thompson Center, U of Missouri, autism specialists instead.  Result: she did not have autism, but no advice for what we should do. Never in all this time did Fragile X ever come up. Last summer we finally went to a developmental pediatrician who ordered the chromosome analysis test. We finally got a true answer.  We also found 2 meds that worked for about 6 months. We then made the trek to Chicago that so many of us midwesterners do. We switched to Concerta, but no help. Back to the previous med at a higher dose.  This helped for about 4 months, but now we are trying to decide were to go next with meds.  Everything seems to be a guessing game, even for the Dr's.  How can you make clear decisions when there are so many unknowns?

About 6 months ago I read about the Brain Balance system,  discussing left and right brain functioning, and how to strengthen the weaker side.  I do have some faith in this, because it works for me, personally, but it is not enough for these kiddos.

Back to therapies.  Suffice it to say, we have tried many, starting with speech and behavior at 3 years old. Some were through school, some on our own, some covered by insurance, some not.  It is hard to say if they were worthwhile, because it is the only path we have taken. Speech therapy was a must, and will be a mainstay for a while.  Our latest is EAT.  Equine-Assisted therapy.  She was apprehensive at first; the horse was pretty big even though she chose the smallest one.  The look on her face upon mounting was fear quickly replaced by joy, and after the hour was over, I have to say that my daughter was calm.  This child is never calm.  Sleepy sometimes, but never calm.  The back and forth cadence of the horse, the total acceptance of animals, the kindness of the people (they were wonderful), the nice, but wet weather and finally being outdoors after a long winter.  Whatever it was, I am looking forward to more of it. Now if I could get insurance to foot the bill. Any advice?