In January of this year we started receiving emails from Henry's 3rd grade teacher regarding problems he was having at school. What seemed like all the sudden his attention span decreased dramatically. His handwriting began changing and got to the point where it was illegible. He could not follow along in class and his grades suffered. He was exhibiting very anxious behaviors - biting &/or breaking pencils, picking at his skin, ripping his clothes. He went from being above grade level in basically every subject to pretty much failing by the end of the school year.
During the first few months of the year we did a lot of talking with Henry, trying to figure out what was going on. What changed? What was causing him to have so many problems? He was as perplexed as we were but he did not seem one bit worried about it. He didn't like that he couldn't get his homework done and got frustrated at certain things but it didn't really bother him too much.
Around this same time we had to find a new pediatrician b/c of an insurance change. We found a new clinic and took Henry in - this was in April. She was not super helpful and basically told us that he had anxiety. We should feed him more protein and make sure he gets enough sleep and to just try to make it through the end of the school year b/c summer would be better. We had Henry see the school psychologist but there wasn't enough time left in the school year for her to really gain any real understanding about what was going on with him. We then had him see an outside psychologist to go through all of the ADHD, anxiety, mental health testing to see if that would shed some light on what was going on. We had a couple of visits with him and left with no answers whatsoever. At one point I asked him "do you ever see kids with these types of symptoms and have it end up being something medical?" and he emphatically said no, never. We went back to the pediatrician and she humored me and ran some very basic tests on Henry and they all came back normal. Her great advice was for us to be nicer to Henry and let him just be a kid. Ummm, OK. At this point I knew we had to cut ties with all of these people b/c they had already made up their minds that Henry just had some sort of anxiety. The problem in my mind was that they were not listening to us. They didn't believe us when we told them that all of this just started in January and before that he was perfectly normal.
I decided to email our old pediatrician and ask for her advice. I sent her a list of everything that was going on and that same day I had a phone call from her telling me that this was indeed not normal - that it could be anxiety-related but it also could be something else, something in his brain. She was terrific and got us names of recommended pediatricians. She was very worried and that made me even more worried.
We ended up with a new pediatrician at Children's Hospital and he is amazing. We saw him late in the afternoon on a Tuesday (this was in August) and before 8am the next morning he had us set up with a brain MRI, an EEG and a neurology appointment - all within a few days. After struggling with this was 7 months someone was finally listening to us and taking everything really seriously. It made me feel better but also so much worse.
This post isn't meant to throw anyone under the bus. Apparently our story is very typical for these kids and their journey to get diagnosed. Most doctors will never see Adrenoleukodystrophy in their entire career. I hope that now that ours have, they will use that knowledge to be better doctors.
The bottom line is - trust your instincts. Do whatever you need to do to feel comfortable. You are the expert on your child, not the doctor.
I am the expert on this awesome little person. How lucky am I?
