Lamictal/CLobazam/Tegretol feedback please

[chmmr]

Hi guys,
I was curious about anyone that is using any of the above meds with youngish children. My 3 year old may be put on one of these in the near future for temporal lobe seizures (complex partials mostly i think) and my pediatrician gave me these three names and said they were all options we could choose from. I was just curious about anyone's experience with them (we had her on clobazam for almost 8 months at one point but she was an infant so it was hard to tell what side effects she had). Just trying to figure out if we try clobazam again first or start on one of the others. Thanks!

Lamictal (lamotrigine)
Clobazam (frisium/onfi)
Tegretol (Carbamazepine)

 

[Erika]

Lamictal is one of the two meds my son is taking for Absence seizures. He is also on Topamax which has horrible side effects, notably extreme fatigue, impulsivity, mood problems, and a little aggression. Lamictal was added a few months ago, to build up in his system so that we can taper off the Topamax. We have not noticed any ill-effects from the Lamictal. It is not usually a first choice drug because it has a higher incidence of allergic reaction, which would present as a rash. Thankfully we didn't have that problem. My son's Neuro said Lamictal has fewer side effects.

 

[chmmr]

Thanks for sharing Erika! I do know about the allergic reaction and the Stevens Johnson syndrome because we had talked about changing her from the clobazam to the lamictal and i was warned about it (and i was terrified to do it so we didn't). But from what i gather as long as it's tapered up very slowly it tends to be fine. I guess i just want to find the med that will hopefully work for her with the least side effects and not a lot of messing around.

 

[Erika]

Yes, that was the key for my son as well. It took almost 3 months for him to reach the ideal dose. At the end of the month, we will begin tapering him off the Topamax and cross our fingers that the seizures will be controlled with the Lamictal alone. I am actually possibly considering tapering him off both, and trying diet changes over the summer. I started him on a gluten-free diet several months ago, and we have seen fewer seizures, and an improvement in his balance and coordination. We may eliminate milk, and do a modified Atkins or Paleo-like diet with him. I have read good things about possible connections between diet and seizures. Good luck!

 

[donnajane]

My 28month old has been on Tegretol since he was around 14months old. We think it was what opened a door in his brain which seemed closed before and he is now so much more your normal toddler. It has also helped largely reduce his seizures. He has it morning and night and at the end of Feb was also put on Clobazam at night (as well as Tegretol) to help control his diaphragmatic seziures he was having over night. It has stopped these, so far, with only a few break through seziures overnight but not the diaphragmatic ones.
We wonder what our son would be like of the meds but at this stage it has not even been mentioned taking him off as he has not had a week yet without a few smaller events, yet compared to the child he was he has come such a long way.
Hope you can find a med which suits.
Donna

 

[jimmyb]

Marinol

Our 22 year old son has been on every med.
Yetserday we went for a drug trial, perampenel, but he is ineligible because he is on Felbatol.
Trying to get off felbatol and dr. said Marinol may be an option..we are going to look into it.try to wean off felbatol and onfi and stay on Vimpat and Marinol..And we pray a lot..