The CDD Journey: Bad news

Childhood disintegrative disorder: Bad News

I spoke with Dr. Mitra the neurologist from the Cleveland Clinic  that evaluated Gavin this past Monday. She explained to me that they have not seen anyone like Gavin before and so they don’t know what to tell us.  She said that Gavin’s symptoms don’t fit any known degenerative neurological disorder or disease. This may be some exotic or extremely rare degenerative neurological disorder or disease. She also said that they have not ruled out  childhood disintegrative disorder either but that we will need to see someone else for that..

This was literally like a kick in the gut and I immediately felt sick to my stomach. I was hoping beyond hope, that we were going to get good news but this was not the case. We are once again left with only enough information to know that something is seriously wrong but not enough to know what that something is. Frustrating doesn’t seem to quite say it.

Childhood disintegrative disorder: What Now?

Because we have not ruled childhood disintegrative disorder we are being referred to Dr. Glazer for evaluation. Gavin was under his care almost 1 year ago today.

Dr. Glazer is the head of the Cleveland Clinic Children’s Hospital Section of Child and Adolescent Psychiatry and Associate Professor of Pediatrics at the Cleveland Clinic Lerner College of Medicine. In addition to his clinical appointment,  Dr. Glazer serves as a physician advisor, a problem-based learning preceptor, and a co-seminar leader for Cleveland Clinic’s Lerner College of Medicine. I don’t believe it really get’s any better then this guy.

Dr. Mitra consulted with Dr. Glazer about Gavin’s current condition. He suggested that Gavin be seen by him as he would be the one to address things like childhood disintegrative disorder and the other mental health issues.

Dr. Mitra also consulted with Gavin’s other Cleveland Clinic neurologists, Dr. Ghosh (movement disorder specialist) and Dr. Friedman and there are only two tests that haven’t already been done. They want to do some more metabolic testing and a few other things that can all be done at one time via blood draw. The only other thing that they have left to do is some type of dilated eye exam, to be performed at their Cole Eye Institute on August 17, 2011 by Dr. Traboulsi. Apparently some degenerative neurological disorders or diseases can be detected via eye exam.

Dr. Traboulsi is Head of the Department of Pediatric Ophthalmology and Director of the Center for Genetic Eye Diseases at Cleveland Clinic’s Cole Eye Institute. He is Professor of Ophthalmology at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University and Director of the Ophthalmology Residency Program at Cleveland Clinic. He is also Chairman of the Department of Graduate Medical Education at Cleveland Clinic. I think that Dr. Traboulsi is pretty much top of the food chain as well.

I’m still waiting for the appointment with Dr. Glazer and I’m hoping to hear something today.

WTF, WTF, WTF…….Yup.. that sums things up yet again

As I stated the other night and once again in my post last night WTF, WTF, WTF is really the only way to sum this all up. While this news is not good…..and it most definitely is not good news, at least we have top shelf doctors working together to figure this out. That is the only comfort I have right now. He’s in the hands of some of the best doctors in the world and I pray whatever is wrong is treatable in some way shape or form. I don’t really know what else to do at this point. We will have to simply wait to hear back from  Dr. Glazer for further evaluation

 

Watching Gavin continue to lose skills that he once had is heartbreaking. Watching him flounder (for lack of a better word) around while trying to pick up his pencil because he can keep from dropping it, is equally as distressing.

As his father, knowing that Gavin is becoming more aware of his regressing motor skills is…..well…there isn’t a word to describe exactly how this feels.

 

Thank you everyone for all the emails and support. I would ask that you please keep my family, especially Gavin in your prayers.

 

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Israa

it's like what's happened with my kids is repeating with your kids unfortunately . I feel with you I know exactly how do you feel at this point. just I want to tell you relax and do not be too optimistic. the unknown metabolic disease is more than the known ones!!!!!

my second son had all these tests + eyes test + skin biopsy + bone marrow biopsy and they did not find anything . except for my older son they found orotic acid in his urine after loosing the legs reflex 🙁 … it's heart breaking.
do absolutely the best for them .but don't hope too much so you will get less disappointed.
my second son has also hepatosplenomegaly , but the older son is fine. maybe it's good idea to check that for your three kids .
I had a feeling before that my kids have Duchenne muscular dystrophy (DMD) or some kind of muscular dystrophy. it was deadly disease. today I read an artical that they found a cure for even these diseases.
I don't know what to tell you . I hope the doctor will find some thing or not ???? In my case I hope if they found something with my kids!!!
I hope the best for you and your family.

Victoria

My heart just breaks for you and your family. I wish I had a magic wand for you all. I am so very sorry. My thoughts and prayers are with you all and we will pray for wisdom and strength that the doctors can find some kind of answers and give your son what he needs to thrive and progress. My prayers are with your children and my prayers are with you and your wife too. To continue to give you strength and wisdom to keep moving forward.

Jess

Prayers for peace, answers and a clear path to helping Gavin through this. I’m so sorry. I wish I had words to make sense of it all.

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