Childhood disintegrative disorder: update 7/21/2011 -

Childhood disintegrative disorder: update 7/21/2011


Childhood disintegrative disorder: The Pending Eval


Our journey down the road to a childhood disintegrative disorder evaluation began this afternoon. After making several phone calls to three different hospitals, I found a doctor at the Cleveland Clinic that deals with this rare condition. I ended up speaking to a nurse and she actually spoke with the doctor himself about Gavin while I was on hold. 

After a few minutes she came back on the line and said that he would see Gavin on Monday…this coming Monday. I have mixed feelings about them getting us in so quickly. It’s the freakin’ Cleveland Clinic, one of the best hospitals in the world, let alone the United States. I was expecting an appointment at least a few weeks out not within 4 days. This hospital is in extreme demand and we got in within 4 days.

On one hand I’m ecstatic we don’t have to wait an extended period of time to figure out what’s going on with Gavin. That said, the fact they are rushing him in worries me just a little bit. Does that make sense? I mean, when your expecting a wait and they tell you they “want to see you on Monday”, it adds a sense of urgency to the mix.

Preparations for the childhood disintegrative disorder evaluation

Due to the fact that we have very little lead time before this appointment, it’s now a scramble to procure as much medical history and information from his current doctors as possible. I spoke with Dr. R’s office and they are getting the referral letter ready that I mentioned previously. They are also getting as much of his medical by then as possible.

I also contacted Dr. Pattie and she will be doing the same. I want to make sure we have as much as possible because the Cleveland Clinic is a far drive and I don’t to have to make needless trips because we were not prepared.

Hopefully, we will be closer to some answers come Monday night. I foresee frequent return trips for various testing in our future. Well, I’m looking at this as good news because we won’t have to wait long to start putting this puzzle together and maybe we can finally figure out what is going on with Gavin. This has been a long time coming.

The last thing in the world I thought we would be looking at was childhood disintegrative disorder and yet here we are.


I would like to thank everyone for your support and also for those that helped to educate me on childhood disintegrative disorder.

Thank You

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Good luck to all of you! CC is amazing in so many areas. Hope they offer some real help.

Thanks Margie

Good luck! This is definitely a good thing that they’re seeing him ASAP. You’ve all been dealing with this on your own for far too long.


Because I am who I am – ;), I am choosing to look at this way – because G has been a medical "wonder" (lets call him the 9th world wonder shall we?!) and this Dr deals in "rare conditions" perhaps he is looking at it in a Dr. House kind of way. A new mystery to solve? (Did ya like that Lizze?!) On the other hand, perhaps the Dr realizes that with the fragile state of G's support system it is best to not let things linger and to get to figuring out what is the best way to proceed – as quickly as possible to help ALL of you. I hope and pray that this Dr is NOT another quack but one that truly will be that "miracle" cog in this crazy wheel you are part of that will help things tremendously! (I also pray G takes the testing as well as he has been doing with his blood draws!!!!)



That's a good point. I forgot about that. They were VERY interested in him the last time he was up there. Perhaps their interest can work in Gavin's favor.

Good point. 🙂


🙂 Just keeping it real with that "other" perspective. I really do hope he can help!


GREAT that you can get in so soon- even with all the rushing you are having to do. Hoping they have the information needed to help you & your family begin to find some answers. Will be thinking of you!


Thank you very much. I appreciate it.

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