On Friday we were back at Children’s Hospital for the genetics portion of the yearly evaluation. There was quite a crowd this year. Besides Monkey and ourselves there were 4 other people in the room for this part. This visit gives them a chance to observe Monkey and ask questions about seizures (none), eye problems (none), heart problems (none), etc. It also gives us a chance to voice any concerns and get some great advice/input.
We discussed the toileting challenges we’re facing. Dr. Picker suggested keeping a food diary to see if we can pinpoint foods that might be related to his excessively soft stools. We haven’t set this up yet but we’ll get there 🙂
We discussed our concerns with Monkey’s ability to focus and sit still for learning, this seems to be a constant source of comment from his teachers and therapists. Duhdee and I are well aware of his high activity level. The child does not stop moving. We take a tag team approach to get through the day. On a good day we’ll take 30+ minute shifts, sometimes a few hours…but on bad days…we will drag though 10 minutes of chasing him before we cry uncle. It is tough.
Since ADHD is common in boys with FXS they are going to take a closer look at his Connors scores. I did one on Thursday and we’re going to have his summer teacher rate him as well. If they look “off” we’ll have to consider medicating him. They really don’t want to do it at this age, it’s hard to even diagnose ADHD at this age, but if it’s holding him back we’ll do it. Personally, I’d like the school to implement a sensory diet and a behavior plan before we jump to medication. I am not convinced they’re committed enough which is unfortunate.
We also discussed Monkey’s PDD diagnosis. It was first given to him a few months after he was diagnosed with FXS by doctors who were not familiar with FXS. At that time they said that it COULD be the FX and that he’d lose the label at some point but that it would make us eligible for extra services so we didn’t argue. Dr. Picker doesn’t see autism when he looks at Monkey. He said he’d be surprised if he kept the label but he also said that if the evaluator is not familiar with FXS that he very well could get a straight autism diagnosis and lose the PDD.
Duhdee and I feel that the school looks to that PDD too heavily. They’re not focusing on the whole child, they’re focusing on the PDD aspect. We’ve put off having the additional screening because we were worried about the evaluator confusing FX symptoms with ASD symptoms. Dr. Picker knows of a psychologist, however, who is very good at recognizing the differences between FX and ASD. He said that even though he does not see it, if she sees it and gives him that label then he’ll be confident that it’s proper. That’s all we can ask. He’s going to see if she thinks we should do the evaluation now of if we should see how the school situation plays out.
We also discussed the benefits of extra OT. The OT did say that it would benefit Monkey to get extra OT but our insurance company is notoriously difficult to work with on this. I am going to see if we can get the OT covered on my own first but they did indicate that they would write a letter of medical necessity if we have any trouble. Of course, even that does not give any guaruntees.
Dr. Picker commented on how very well Monkey is doing overall, he said he’s seeing great maturity from him and physically he’s doing great. He’s going to work with our pediatrician on a couple of things (folic acid and ultimately ADHD meds if necessary) but he thinks we’re doing as well.
Oh, and, I was brave and asked for help for me too 🙂 I asked for a referral to a psychiatrist who has at least a basic understanding of FXS carrier issues. I should be seeing that soon. Also they’re starting a support group for FXS carrier moms through the clinic and I’ve asked to be included in that as well.
This was a great way to end a very stressful week!
5 thoughts on “The Fragile X Clinic (Day 2 of 2)”
I bet it was stressful. But it sounds like it was promising, too. So that is good. Hugs to you. Way to go on asking for help for yourself, too. 🙂
The medical waiver pays for OT, PT, speech, FX Clinic ….. seriously. I think you should use it. That’s what it’s there for. They base eligibility on the child’s income (at least here), so that shouldn’t be an issue. I REALLY think you should think about it. I know I am sounding kind of pushy, but it has changed our lives.
I actually did look at it and recalled that we did look into it before. Family income is taken into account and we did not qualify then and there have been no changes that would make us eligible now 🙁
Our medical waiver plans where we live are a 7-10 year wait list. Is there another medicaid waiver plan I should know about? We have Ian and Benjamin on SSI, which allow for Medicaid, but not a waiver plan….all depends on our income, which is borderline and can change a little in different months. We’re praying the two come up before 7-10 years.
Also, can you elaborate more to me about this FX clinic? And how old is Monkey? Can I email you to chat more about this? We also have a HUGE problem with loose stools and WAY WAY hyper all the time! We really haven’t found ANY doctors around here that are familiar enough with FX. I need to search more.
I really don’t know enough about it to give any advice, but my understanding is that each state has it’s own procedures. This website can show you what programs are available in your state (I don’t know if it’s exhaustive or not.)
You can send an e-mail to firstname.lastname@example.org, I’ll share as much info as you’d like.