We heard back from neurology today. Gavin’s doctor called us personally to address our concerns. Without regurgitating all the boring details, there is concern that Gavin‘s seizures are getting worse.
The fact that he’s wetting the bed says that he’s likely have more than just absent seizures.
The doctor told us that, while it’s possible for absent seizures to cause loss of bladder control, it’s extremely rare. He then prefaced that comment with, “well, we are talking about Gavin’s here, so anything possible at this point.”
Gavin is now scheduled to return to Akron Children’s Hospital for a 5 day VEEG, beginning this Friday.
He wants to keep a close eye on Gavin and see if they can uncover not only what’s going on with the seizures but also the increasing tremors that he’s experiencing.
Not that this could ever come at a good time, but as far as the timing of this is concerned, it’s pretty friggin bad. I’m not sure how we are going to pull this 5 day stint off. There are a lot of things that will need to be worked out, especially the logistics, financial aspect and who’s going to go and who’s going to stay.
If this wasn’t super important, we would probably try to push it off a few weeks until things are a bit more stable.
As with any parent, special needs or not, we got to do what we got to do.
**Thanks for reading**
-Lost and Tired
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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.
Just last week we did a 2 day VEEG with out 2 year old. Not fun. Not seizures at least. But good luck! It will be over soon and you'll at least hopefully have some answers.
@KaitlinFox We just had one about a month or 2 ago. He was officially diagnosed with Epilepsy then. Things are getting a bit worse so we have to find out how much worse.
I'm really glad that your little one isn't having seizures. 🙂
Hi Rob — please know my thoughts and prayers are with you, your family, and Gavin. I hope they can get a handle on the seizures and tremors. My 13 year old cousin is on the autism spectrum, and while he hasn't had experiences like this, there are daily challenges with him as well. Welcome to the Livefyre community, and please feel free to let us know if you have any questions or feedback for us. We'd be happy to help.
@annedreshfield Thank you so much for reaching out. I really appreciate it. I love Livefyre so far and best wishes to both you and your cousin. 🙂
Thanks again