Jace had a seizure at therapy the other day. What they described was what he did everyday when we were unknowingly using contaminated water for his 6 daily bottles, and his sleep apnea was really severe and untreated. (Again, because we didn't know, and the pediatrician ignored my reports and pleas for help with his symptoms.)
He'd had a really rough night beforehand... I kept hearing him moaning/groaning like he was having nightmares or something much of the night. I wish I could invest in a night vision video recorder so I could see if what sounds like nightmares is actually seizure activity.
I'd been told by the neurologist that we no longer take the boys to, that if Jace improved without medication, it couldn't possibly be real seizures. As I look back, I realize how foolish that statement was. If you reduce and eliminate the most common triggers, which I did, you'll see a reduction. Common sense.
With the change of neurologists and having geneticists involved, I've been told he is very likely having them but they just aren't showing on an eeg yet. As I see patterns with Jace and Damon parallel Aidan's experiences, it makes me nervous we are headed down the same road of a major increase in seizures and therefore regression.
Jace waking multiple times a night and wanting to just get up for good has increased significantly again. It had reduced after the surgery to help with his sleep apnea, but gosh, in the last month it's increased a ton again. Something is going on, and it would seem it's an increase in seizures.
There are some differences between brothers.
Aidan developed above normal for his first 3yrs... he was ahead of his peers in so many ways, like way ahead. Jace was developing normal until the point both he and Aidan regressed at the same time... Jace was 9mos old and Aidan was 3yrs old. Damon has been behind from the beginning. I've also seen more evidence of seizures in Damon as a baby than I did with his older brothers... but that could be because I'm familiar with the symptoms now.
So I'm left keeping detailed notes while waiting and watching.
As for what went away: Aidan's seizures had increased, along with his autistic like symptoms, with the infected tooth... so they decreased, and the autism behaviors left completely, with the removal of the tooth. Yay for that! I wonder if some children are misdiagnosed with autism, that are actually having undetected seizures...
Jace waking multiple times a night and wanting to just get up for good has increased significantly again. It had reduced after the surgery to help with his sleep apnea, but gosh, in the last month it's increased a ton again. Something is going on, and it would seem it's an increase in seizures.
There are some differences between brothers.
Aidan developed above normal for his first 3yrs... he was ahead of his peers in so many ways, like way ahead. Jace was developing normal until the point both he and Aidan regressed at the same time... Jace was 9mos old and Aidan was 3yrs old. Damon has been behind from the beginning. I've also seen more evidence of seizures in Damon as a baby than I did with his older brothers... but that could be because I'm familiar with the symptoms now.
So I'm left keeping detailed notes while waiting and watching.
As for what went away: Aidan's seizures had increased, along with his autistic like symptoms, with the infected tooth... so they decreased, and the autism behaviors left completely, with the removal of the tooth. Yay for that! I wonder if some children are misdiagnosed with autism, that are actually having undetected seizures...
1 comment:
Your boys are so darling. I am sorry about the increase of the seizures, it's for sure never fun.. It's amazing how any kind of illness etc. can affect the brain and how it works, I remember Trent's seizures would increase if he was sick with a virus etc.
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