New to Trileptal... after Keprra and Phenobarb not working

[Laura Strausburg-Smith]

Need information from anyone who has been on Trileptal.  My son is 8 months old and just begining this drug.  His nero is eventually going to titrate down Pheno and Keppra.  Expierence with side effects or effectiveness.  I know everyone is different when it comes to drugs, but your comments may give me a place to start.  Meeting with his nero next friday. thanks for your time and sharing your stories!

[lsquier]

Trileptal has been my son's most effective med. He really never experienced much in the way of side effects with it. The only one he has experienced was some dizziness and double vision when his dose got too high and he was toxic on it. He builds a resistance to every med he goes on, so it is not a long term solution for him, but it has been his most effective for the longest.

[Irishmum]

It was a bad drug for my child but mine was post-infantile spasms and should never have been prescribed Trileptal.  Almost caused a relapse.

[Katie Miller]

He was super sleepy for a long time. And we have had a very messy EEG while on it. But I have seen a stop in tonic clonics and atonics. Partials still here and there. He also takes Keppra.

I don't know how I feel yet. When on it at end of November. 

EEG worries me. But it could be nothing to do with Trileptal. Things were going downhill prior to it. 

Followup at end of March. 

[Laura Strausburg-Smith]

thanks for the input. I guess I should have mentioned my son has prolonged partial seizures. All of them have generalized throughout his body. EEG shows abnormalities on right lower side of brain. last seizure he had he went into status. we were titrating down Pheno at that time. Going to try Pheno titratin again in 3 weeks when Trileptail at target dose.

[JMO]

My daughter had CP's and we tried Trileptal. It didn't work for her but it didn't come with any major side effects either. She was nauseous the first 2 weeks or so and her balance was off but that leveled out. 

[Vanessa]

In our case it made her constipated and cranky/miserable...it also gave her more seizures and would not have been our first choice (we found out she has other reasons not to take this class of drug). It can work well in some people though...We were taken off after 6 weeks...

[Leslie Glover]

My daughter is on Trileptal, phenobarb and Keppra.  Kept her seizure free for almost two years with no noticable side effects.  We went through several meds and med combinations before this one and this one has worked the best for her.  Hopefully the trileptal will be what works for you guys, too.  Best of luck with everything.

[Laura Strausburg-Smith]

Leslie, Our Nero wants to get my boy off of 3 medications.  Says it not a good thing?  But at this point, he is going on 2 1/2 weeks seizuire free.  he is only 8 months old.... maybe thats her concern about the meds.  Our nero mentioned he may have intractable seizuires! I did not want to hear this!

[Laura Strausburg-Smith]

Seberina- We have seen a increase in hyperactivity!!!! I am concerned about this!! It takes both my husband I to give him a bath and he's only 8 months old.  Do you know why it causes this? 
 
Seberina said:

My child has been on this for years. It has had good seizure control (complex partials), but it does cause hyperactivity and redcued ability to concentrate. This becomes more obvious with increases in dosages. Overall we have been happy with the med.

[Kc]

My 2 and a half year old has been on trileptal since right around his first birthday. It has worked well for us in controlling the seizures. It has given him some acid reflux, but no other real side effects. It took awhile to find a good dose...just slightly too much and it makes him groggy and out of it, but slightly not enough and the seizures came back. We have to adjust it every so often when he gains weight, but overall it has been a great help.

[JMO]

My daughter has refractory seizures. It just means that she's tried multiple medications and still has seizures. It doesn't mean stop trying or give up hope. As quickly as they slap a label on it they can take it off. 
Have you considered diet therapy? Even at 8 months it could be an option. Keto cal is a formula similar to a baby formula and they even make a protein only formula now for very severe cases. Just something to consider. New studies are showing diet therapy to be as effective as surgeries. I'm a strong advocate for treating everything we put in our body as beneficial and using food as medicine. 

Laura Strausburg-Smith said:

Leslie, Our Nero wants to get my boy off of 3 medications.  Says it not a good thing?  But at this point, he is going on 2 1/2 weeks seizuire free.  he is only 8 months old.... maybe thats her concern about the meds.  Our nero mentioned he may have intractable seizuires! I did not want to hear this!