Autism

[Rushman14]

Bumping my old thread for an update.

 

Stephen is 14 now and in many ways, is much the same as ever...still a preschooler in his mind, while his body keeps growing. We have him fairly stable behaviorally right now, with the help of meds.

 

The latest kink, though, has been tough to accept. He had his first grand mal (tonic-clonic) seizure on April 6. It was the single most frightening thing I have ever been through, ever.

 

He's had none since then, but we just don't know - he may never have another one or he may have them again and again. No further testing or any new meds unless it becomes a pattern.

 

Oh no, hopefully the seizure was an anomaly. Must have been horrifying :( Kara had 2 febrile seizures when she was a toddler and was definitely the scariest thing I had ever experienced.

 

So hard to believe Stephen was only 5 when you started this thread.

[GhostGirl]

Bumping my old thread for an update.

 

Stephen is 14 now and in many ways, is much the same as ever...still a preschooler in his mind, while his body keeps growing. We have him fairly stable behaviorally right now, with the help of meds.

 

The latest kink, though, has been tough to accept. He had his first grand mal (tonic-clonic) seizure on April 6. It was the single most frightening thing I have ever been through, ever.

 

He's had none since then, but we just don't know - he may never have another one or he may have them again and again. No further testing or any new meds unless it becomes a pattern.

 

I cannot even begin to imagine how terrifying that was, Belle. Hard to believe there isn't a medication that would prevent another from occuring, even though he's only had one seizure. Expecting you to white-knuckle while you wait for another seizure and THEN doing something about it seems unreasonable to me. There's a bazillon medications on the market. Surely, there's anti-seizure med that can be used on a maintenance schedule for Stephen.

 

I thought the same thing, but apparently anti-seizure meds have pretty serious side effects, so...the idea is not to start them until or if they become really necessary. I'm slowly learning to breathe again...sort of.

 

Thanks as always for your support, here and "offline," sis.

 

Bumping my old thread for an update.

 

Stephen is 14 now and in many ways, is much the same as ever...still a preschooler in his mind, while his body keeps growing. We have him fairly stable behaviorally right now, with the help of meds.

 

The latest kink, though, has been tough to accept. He had his first grand mal (tonic-clonic) seizure on April 6. It was the single most frightening thing I have ever been through, ever.

 

He's had none since then, but we just don't know - he may never have another one or he may have them again and again. No further testing or any new meds unless it becomes a pattern.

 

Oh no, hopefully the seizure was an anomaly. Must have been horrifying :( Kara had 2 febrile seizures when she was a toddler and was definitely the scariest thing I had ever experienced.

 

So hard to believe Stephen was only 5 when you started this thread.

 

I know, right? I was thinking that, too, about him just being a baby when I started this. :)

 

It was just a nightmare, yes. You know exactly what it's like, then, since your girl had seizures as a baby. I honestly thought he was dying. He wasn't breathing and he turned blue. I did mouth to mouth... I was told at the hospital that he wouldn't have been in danger, that the cyanosis was just a result of his diaphragm seizing like the rest of his muscles, but I didn't know that then and I thought I was losing him.

[Mr. Not]

My respect for mothers' has really risen the past year. There's one I know who made the mistake of giving into her child's every request fearing a tantrum... Unfortunately, there's a lot more to fear now that he's 15, especially since he was raised with the mindset that he can get anything he'd like. A bit late, but now she is trying to change that, and saying no usually results in verbal abuse and slight physical (I say slight because frankly he doesn't know how to fight, still is never fun to have your own child hitting at you I'd imagine...)

 

I don't know how she deals with it, but in three years she's definitely going to find a house for him... I'll probably be here in town able to assist until then, so I guess she's more thankful about my place in life right now than I am