If you’ve been following our story for a while, you likely know that its been on a very long, very challenging journey with Gavin for most of his life. If you’re new here, I’ll give you a bit of backstory, to help put the significance of what I’m about to share with you, into the proper context.
Gavin will be 20 years old on January 18, 2020. He deals with more than his share of serious physical and emotional health issues.
Gavin began regressing about the age of 4. The only way I can describe it is to say that he was put to bed Gavin, and he woke up an entirely different kid. The change was simply that profound. I know this sounds crazy but it was like someone had replaced him with a very robotic, emotionless and detached version of him. I literally had to get to know him again. His likes and dislikes changed. He went from a very affectionate child to someone who didn’t want to be touched.
This began a long, desperate and exhaustive search for answers. Something was wrong and while he would eventually receive a diagnosis of Autism, that never quite fit or explained everything.
The search for answers took us to Akron Children’s Hospital and the Cleveland Clinic. Gavin was lucky enough to have access to some of the best doctors in the country and in some cases the world, but no one could figure out what was going on.
Long story short, Gavin has been diagnosed with Autism, more specifically, Childhood Disintegrative Disorder. He has Epilepsy, Asthma, a very rare Autonomic Disorder, Common Variable Immunodeficiency, Schizophrenia, Ehlers-Danlos and is profoundly cognitively and emotionally delayed. He has literally had every conceivable test done to figure out what was going on. He’s had everything from Chromosomal Microarrays, which is a test that analyzes chromosomal rearrangements but isn’t high-resolution enough to look at individual genes, to muscle biopsies, MRI’s, countless labs, and even spinal taps. There are too many tests to remember, let alone list here. The point is, for the most part, everything has always come back normal.
As a parent, it’s very frustrating because I know that statistically, it’s improbable that he can have all these incredibly rare conditions and not have them somehow linked together by a root or common cause. Unfortunately, nothing has ever been found that links everything together. The current working theory is that this is all tied to Childhood Disintegrative Disorder, but there’s no way to know for sure.
To be honest, I had pretty much given up all hope of ever knowing what is going on and if there’s something that can be done to better manage or treat these many conditions. I have always struggled because I didn’t know for sure if everything that could be done for him, was being done. We never wanted to put him through anything more than what was necessary and after a while, any practical directions to go in had run out.
This is so interesting, thank you for sharing. Our son is adopted and the whereabouts of his birth parents are unknown. Does a birth parent also have to be tested in order to gain information about the child?
Were those test painful to him? I have always wondered…
Nope. All you do is spit into a little container. ☺
Hoping you find the answers you are looking for. We all want to give our children as healthy and happy a life as possible.
I’m glad he has this opportunity. I know if I could find a way to give Henry a better life, I would. Hope this points in a positive direction for treatment. If not, at least you will know more and understand it better.