I thought that it might be a good idea to bring everyone up speed on everything that is going on with Gavin. I’ve got a ton of new readers (thank you) and I think now would be a good time to get everyone on the same page.
Operation Hope, is what I call our mission to help Gavin overcome the obstacles in his life. This includes finding any and all ways that we can slow the progress of, cure or reverse his mounting list of very, very serious and life threatening health issues.
Gavin is 13 years old chronologically but 4 years old developmentally, in many but not all areas.
Gavin loves Lego’s, video games, Sonic the Hedgehog, drawing, writing, reading and going to school. He’s very creative and can be very kind and polite. Gavin’s a truly amazing kid for a million reasons but what I truly admire about him is how he faces the challenges you’re about to read about and never complains.
I do to plan on going into much detail about these issues because you can easily find information on this site that will provide you with more information.
I think I’ll list his current mental health challenges first. Keep in mind that these are all confirmed diagnoses, by 3 different sources.
Autism (formally known as Aspergers)
Bipolar Disorder
Schizoaffective Disorder
Reactive Attachment Disorder (RAD)
Conduct Disorder
PICA (not sure where this actually fits)
Cognitive Regression
Developmental Delay (especially emotionally)
His medical issues are exceedingly rare, to the point where even hospitals like the Cleveland Clinic have never had a child like Gavin come through their doors. In fact, his autonomic specialist at Cleveland, has only treated 3 kids, worldwide, including Gavin, for his particular autonomic dysfunction. We are currently working on getting out to John’s Hopkins.
Asthma
Epilepsy
Primary Immunodeficiency
Significant Autonomic Dysfunction
Neurological Degradation (yet to be identified)
Loss of motor control (effecting speech and movement)
Ataxia Telangiectasia Like Disease (this is a pending diagnosis)
Significant Memory Issues (especially short term memory)
As you can imagine, this is very, very challenging, not only for Gavin but for us as his parents.
Right now we have hit a wall that has sorta derailed our almost decade long quest to help Gavin. We have gone great lengths to not only identify what he’s facing but educate ourselves on every conceivable possibility.
Our focus is to identify whatever we can because that’s the best chance to address the cause and not just the symptoms. Unfortunately, this has proven to be quite challenging on many levels.
At this point in our journey, we have reached a place where no one really knows what to do. Everyone involved however, agrees that our next step needs to be John’s Hopkins. At the moment, I’m still trying to get any and all records, transferred so John’s Hopkins can decide if making the out of state voyage will be of any benefit to Gavin.
The car ride itself presents challenges.
Even if we had the funds to physically cover the cost of the 6+ hour drive, Gavin doesn’t do well in the car, thanks to the autonomic dysfunction. The trip itself could send him into a crisis.
Everything we do for Gavin is carefully thought out and planned ahead of time whenever possible.
Thinking outside of the box is something that we have come to rely on because a conventional approach to his physical and mental health challenges, simply doesn’t work.
I suppose that this is probably enough information to give you a better understanding of the challenges Gavin faces in life and we face in raising him. You can always read through the archives, shoot me an email or simply ask your questions in the comments below.
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lostandtired MB13 My father was like that. He had Shy-Drager Syndrome. He couldn’t sit anywhere for very long without having issues. Even sitting thru a 30 minute drive to town for a doctors appointment caused his blood to rush downward.
MB13 that is a really good question. Basically, Gavin blood vessels don’t constrict, so when he stands up, all the blood rushes to his lower extremities. If his vessels would constrict like they were supposed to, he would maintain normal blood flow.
When he’s in the car, he has the same problem. His body can’t maintain his blood pressure because of the sorta sloshing around of his blood, again because his vessels don’t always constrict the way they are supposed to.
Something that I’ve been curious about for a little bit – what is it about the autonomic dysfunction that makes the car trips hard for Gavin? They clearly are physically difficult for him!