Hi, new to forum

[Phils mum]

Great to have found this forum, I'm reading heaps & learning.

I have a 24yr old autistic son (non verbal), he started having seizures 5 years ago. We have been on lots of different. meds with varying side effects. At present he has become quite violent & we are struggling to cope.

Meds are keppra, tegretol & vimpat, he has been on all 3 for approx, 1 yr. Realize the keppra can do this but it is the only med that has semi controlled his seizures & he is on thee vimpat to buffer the keppra side effects.

Any thoughts/suggestions much appreciated.

 

[Nakamova]

Hi Phil's mum, welcome to CWE!

We have several members who have familiarity with autism, so hopefully they will chime in. Feel free to start a new post in The Kitchen with "autism" in the heading -- that may get more specific responses to your question.

Best,
Nakamova

 

[KatymomtoA]

Welcome to CWE Phils mum! Glad you're here!
I'm also a mom with a 6 yo son who has epilepsy. Looking forward to getting you know you more.

 

[masterjen]

Hi, Phils mum and welcome!
Lots of great people here to chat with, air frustrations, and ask questions. Also never be reluctant to add suggestions and opinions to any discussion on the forums as well.

 

[Frink]

Welcome to CWE.

 

[Suman]

Phil's mum, welcome to CWE!!

My 20 year old has autism and has his first seizure about 3 years ago. He has been on Keppra (kepprage & insomnia), Depakote (lethargic & insomnia), Lamictal (insomnia, abdominal pains, more seizures), Zonisamide (severe anxiety & aggression) , and now a possible change to Vimpat.
I was told by our neurologist that Lamictal was one of the safest and a mood stabilizer too. Unfortunately it did not work for our son (he had more seizures on it).
Take care & best!

 

[resaebiunne]

Hello and welcome.

There are a lot of people on this forum who talk about kepprage, which is one of the side effects of Keppra. It sounds like it isn't helping, and could be responsible for the violent behavior. Definitely talk to your neurologist or epileptologist and see if changing to a different medication helps. Also, I found my epileptologist to be much better than my previous neurologist. If you aren't seeing an epileptologist, I would highly recommend it. They can give more insight into the seizures and provide more effective treatments.

 

[Phils mum]

Thanks

Thank you all for the warm welcome, great knowing there is a listening ear and kind people out there!

 

[Blonde Angel]

Hello Phils mum

I'm also a mum to a child who is non verbal, she is 13, as you know we are the masters of reading our child's behaviours ...

and sometimes she still makes me wonder, even when I try to sort it out.

 

[Blonde Angel]

I forgot to mention...

My girl did not do well with Keppra but also with the Tegretol, we had issues with behaviours. (headbanging, violent pushing, biting scratching, not focussed and not sleeping issues)
If you are not getting quality of life... please get the meds reviewed .

Not sure why the need for such a drug combo, perhaps the Dr can prescribe one anticonvulsant only at a time??

 

[Suman]

Your thoughts are so beautiful Blonde Angel...

 

[seagull]

It not easy is it...My daughter in residential now and she wants come home but I no cope with her.
I know what you going through only to well.I not able to advice just give personnel opinion which may not like You need respite are there respite places near you.If you get a few weeks respite it help you think with clarity it did me plus my daughter had good time she could be violent.Her e very minor now and not worth going back on Meds.Also having few weeks respite other people see him and able give another perspective