Friday, March 11, 2011

Fragile X Clinic

It's been a week now since our official diagnosis. Even being prepared for the diagnosis didn't make me realize actually how much more there was to do for Ayden. To compound our list, we also had parent/teacher conferences at his school this week! First up though, FXS Clinics.

Mr Awesome and I decided after the diagnosis that it would be beneficial for Ayden to have him evaluated at a Fragile X Clinic. His current 'team' does an amazing job, and we try to stay consistent between school and home; however, we figure it won't hurt anything and it could definitely help him.

We don't actually have a FXS Clinic in our state, so we had to look at ones out of state which of course brought up insurance issues. We easily narrowed our choices down to three clinics.

1) The M.I.N.D Institute
We don't figure we will be heading here (Michigan to California is a LONG WAY), but since multiple family members of ours have been evaluated here I contacted them first. I doubt our insurance will cover an evaluation here or that we could afford to travel so far; but participating in clinical trials or research can cut those costs down. It never hurts to ask, right?

2) Rush University Medical Center Fragile X Clinic
This one is pretty close to us. We also have family in the area, which would help if we make multiple trips or needed a place to stay. I started out with a quick email to the clinic coordinator (found on the National Fragile X Foundation website) They called me within 4 hours of the email going out, I was pleasantly surprised as we figured it may be a week or so. After a call or two with them, we figured the initial evaluation was definitely covered by our insurance and they can get us in for a visit in May. That first appointment lasts for two hours while you meet with the doctor there. I requested another appointment other than a 12:00 PM in May after explaining Ayden napped from 12/1pm to 2/3pm and was given an alternate date/time in July at 1pm. We scheduled the 12pm figuring the appointments filled up fast and knowing we can cancel later if needed. I'll be honest, my first impressions were not great.

3) Akron Children's Hospital Fragile X Clinic
This is the other clinic fairly close to us. It's just about as far as Rush, but without the benefit of a place to stay should we need it. Again, I started off with an email to the clinic coordinator. Again, I received a call within about 4 hours of my email going out. I talked with the clinic coordinator for about 30 minutes and she answered all the questions I had as well as explaining how their initial evaluation worked. We'll meet with a behavioral therapist, the doctor, an occupational therapist, and the speech language pathologist over the course of two days. Not only was she very polite, she also knew LOADS about Fragile X - which is a major plus. She asked a lot of history and without me asking let me know they did intake appointments scheduled around nap times. Color me impressed. A quick call to insurance told me we were fully covered at this clinic too. While they could get us in during April, the dates were over Issac's birthday so we opted with a May appointment. (They do initial evaluations once per month)

So, we have an appointment with two clinics right now. We decided to keep both, then if we decide we don't like the Akron Children's Hospital Clinic, we'll keep the appointment at Rush. If Akron turns out to be great, then we'll cancel the appointment at Rush. Meanwhile, I'm still waiting to hear back from the MIND Institute. I don't expect anything to come from that, but you never know.


  1. You absolutely will hear from the MIND Institute, they are fantastic and it's sort of the "dream" clinic. You will get an appointment and you should most definitely go if at all possible.

    If you don't hear from Louise Gane at MIND in a week, follow up...she's been a bit swamped lately.

    We are happy with our local clinic (Boston) but we will go to the MIND as well at some's just a 5 hour flight for us which is intimidating!

  2. @Umma We heard from Louise last night! I'm going to post about it later, she just called at 10:30 PM so I didn't get a chance to yet. :D