As a parent to at least 2 boys with major medical issues I’m always on the look out for health issues.
Unfortunately, that isn’t as easy as it sounds. Because #Autism has affected their communication abilities, it’s often very difficult to know what is happening. With Gavin, a lot of what he says doesn’t make any sense, especially when it comes to how he’s feeling.
When it comes to Emmett, he simply lacks the expressive language ability to articulate how he feels.
All to often, I have to rely on my gut feelings to tell me somethings wrong. Most of the time all I can do is trust that gut feeling and get them to the pediatrician for an evaluation. There really isn’t a better way at this point. Our pediatricians office is very understanding and supportive. They understand that we error on the side of caution and in the case of my boys, that’s usually the best way to go.
The reason I’m writing this post is because I have one of those gut feelings about Gavin right now. Somethings not right and I don’t quite know how to handle it.
Gavin spent a few days with Lizze’s parents beginning with the night of Elliott’s 24 hour EEG. Apparently, he spent quite a bit of time sleeping. That’s not typical for him. In fact, the moment he came home, he went right upstairs to and slept for at least 4 or 5 hours, waking up only to eat dinner and go back to bed.
With Gavin, this could be perfectly normal or indicative of something being wrong. It could be puberty or it could be just about anything else.
That anything else could be something related to his degenerative neurological disease, primary immunodeficiency, Seizures activity or now Dysautonomia. These aren’t insignificant things either and they are legitimate concerns.
Gavin just seems out of it and disconnected even for him. I would describe him as being like a zombie, if that makes any sense? It would lead me to think about being overmedicated but that’s not the case, I know that much for sure. None of his medications would even have this type of effect, especially at the levels he’s at.
Until we get into the Cleveland Clinic’s Dysautonomia Clinic on May 4th or until we get into see the mitochondrial specialist, there are few options for us.
I find that extremely frustrating as a father. At this point, I’m literally unaware of any stones we have left unturned, with the exception of the two mentioned above.
I just can’t believe we have run out of options.
I’m the kind of person that never wants to quit until the jobs done and until Gavin has been stabilized and we know as much as is possible know about his conditions, there’s still work to be done.
For now, I just have to deal with that nagging feeling that somethings wrong. My wife and I will watch for anything that could indicate a life threat and respond accordingly. Sometimes that’s all you can do.
This is one of the sides of special needs parenting that many people don’t see. The constant worry and fretting about the next medical crisis. Despite what people on the outside looking in think, it’s not overreacting either. It’s a fact of life that many special needs parents have to cope with every single day.
If you know a special needs family, please offer love and support. It may seem like they are over protective or overreacting but I can tell you from personal experience, that often times, with kids like mine, you simply can’t overreact but you can underreact. As special needs parents, we never want to underreact.
Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. 🙂