ADVERTISEMENT
hickman1

13 yr old with partial complex seizures on Trileptal! Not working need advice..

Need advice! My son is an athletic 13 yr old..Basketball, runs Indy Mini marathon, works out and eats healthy to start... He was diagnosed with partial complex seizures at 2yrs old. It was bad at first ( to any parent and any condition is bad..) He would radomly turn blue and quit breathing... They would not last long, but just wore the little guy out! We have been through the depakotes, keppras, and about 10 other meds the latest was vimpat and was horrible.... Every side effect that was on the bottle effected our son.  I believe it was depakote that we found out is a no no for younger males it causes bones to become bittle or density ( one of those,,its been a while)... He went for a stint where he was on Trileptal for a long time. Somewhat controling them for 2 yrs seizure free. Then they came back. The doc increased his meds. Currently he is up to 2550mg a day and still has small "episodes" that he actually talks through! He says he sees red and blue flashing in his right eye along with a earth shattering headache,. Then falls asleep. 

The Trileptal side effects... he is not the same. Hateful, always tired, memory laps, speech is sometimes backwards , never smiles, says his days are miserable, troubles concentrating through school, even in the resource room for help! Then gets to come home and do 2-3 more hours worth of homework, because he couldn't stay focused enough in class... The teachers are clueless... So I ask or second guess myself; is the medicine worth having my son constantly doped up to a drunken state? Or take him off it and risk the small seizures he STILL has and have my polite always upbeat son back??? They say 2400mg is a max adult dose? Now Riley hospital after a 24 EEG bumped it up to 2550mg... Do not know how much more his mom and I can bare! He misses school 1/2 days a couple times a week because he can't function in the morning.....

Any advice or ???? would be awesome....

Thank you for listening to my rant.. : )

Comments

Re: 13 yr old with partial complex seizures....

That sounds a lot like what happened to me in middle school. I don't have partial complex seizures (I don't think) but I do know that stress is a big contribution to seizures a lot of the time. I didnt do too well then, either, grades-wise, but they've gotten a lot better now that I'm in high school.I do not think that grades are as important in middle school as long as he understands the concepts at the right levels, especially with all these crazy education standards. (i dont know if they're switching them a lot where you live, though)I would say try to find out what works now before he gets into higher grades where colleges look at your GPA.

Being a teenager myself I'd say the best thing to do is be supportive -- don't bring up the seizures specifically, because that usually just makes it more upsetting, but try to make him happy in other ways.

Also, if you think the medication isnt doing more at higher levels than it was at the lower dosages you need to say something to his doctors. A lot of doctors trained in epilepsy think that treating it is an art with medication but a lot of the time I don't think it does anything much. >:/ Especially since the people taking it are at risk of being addicted.

I'm sorry but I really cant think of anything else that would help you! Seizures are hard to deal with during school. People don't realize it a lot of the time.

 

Re: 13 yr old with partial complex seizures on Trileptal!

My daughter had very similar reactions/changes to Trileptal.  She also has partial complex seizures.  She became withdrawn and sad and struggled with attention in school.  We switched to Lamictal and have had good results. Her personality is back to normal but she still struggles with word retrieval which makes test-taking stressful. 

As far as the school, you mentioned "resource", does your son have an IEP?  If he does I'd convene a case conference and address the homework issue.  No one is supposed to spend 3 hours most nights on school work. There is certainly a point of diminishing returns :) 

If I've learned anything on this journey it's that I have to advocate for my daughter both at school and at the Dr. office.  Even with professional, caring teachers/drs I have to clearly communicate what we're experiencing at home.  This means staying on top of things which isn't always easy!  You being on this site speaks well of your commitment!  Keep soldiering on!

Re: 13 yr old with partial complex seizures on Trileptal

People, especially the younger ones, having this malady needs professional and most importantly moral support from families the community. They can't cope with this alone. They need support groups. - Rick Siskey