Yesterday was Bean's follow up at the CP clinic at Children's. No, he doesn't have CP but the clinic sees children with various conditions, syndromes and developmental delays.
The appointment went really well. He saw a physiatrist, CNP, occupational therapist, physical therapist and speech therapist. Everyone was really pleased with his progress since his appointment 6 months ago. We are not going to do braces/afo's (yet?) and we will go back for another follow up in 3-4 months.
After the appointment, we stopped in at the lab to have his blood work done for his GI since we were already there. They were doing a full blood panel as well as testing for Celiac disease. I also requested that they test his serum ferritin because a deficiency can cause periodic limp movement disorder.
If you have read this blog for any period of time, you know that Bean is a horrible sleeper. He thrashes all night long and wakes up screaming every one-two hours - some times more frequently. My mother first saw mention of PLMD and iron deficiencies in a child with Williams syndrome so she suggested that I look in to it. When I read about PLMD, it fit him to a tee, so I wanted to test for it.
Well, I have amazing news.
Bean is anemic. I know, I know. It's not a good thing. But it is a good thing; amazing even.
It's really no surprise. He eats like a bird and can't take a regular multi-vitamin because of calcium issues.
I'm not sure how they have missed it this long but it could be the answer we have been looking for. And it's easily fixed. This could explain all of the sleep problems that we have been dealing with for TWO FLIPPING YEARS! Well, not all - we still have the behavioral component to deal with but that comes after we fix the medical problem.
I've been insisting for two years that there's something more going on than a behavioral problem. Something not normal, not right. And of course there's a behavioral problem. I comfort him to sleep and every time he wakes and he's still in my bed. We HAVE to deal with that.
But I was right, darn it. There is an underlying medical reason that Bean can't stay asleep and no amount of melatonin or anything else seems to help. He's deficient in a very important mineral that is causing cramping in his limbs over night.
So here's the plan. We are starting an iron supplement today. We are continuing with melatonin. We will have his iron levels retested in six weeks (or sooner if I have my way). We are going to see a sleep specialist in two weeks to try to fit all the puzzle pieces together and come up with a sleep plan for Bean that takes all factors in consideration. BTW - one of the docs at our regular pediatrician office, Kids Plus Pediatrics, is the aforementioned sleep specialist. Have I mentioned that they are awesome? Really a one-stop shop. They can handle so many things! In the meantime, I'm hoping that Bean will sleep a little more restfully as we begin to restore his iron supply and we all begin to get some much deserved, much needed sleep. Then, we'll start to deal with the behavioral issues...
When I got the news this morning, I was so happy that I cried. Yes, happy tears. Again, not happy that Bean is anemic but overjoyed that we might finally have our answer.
Could it really be so simple? Oh, I hope so!