My son is 1.5 years old and has been having nocturnal myoclonic seizures since he was born. First he was on phenobarbital, then we switched to Keppra. Currently, he is taking 1,000 mg of Keppra per day. The seizures are much lighter now, but they are still a daily occurrence. The doctor has thus recommended adding Topamax. I have mixed feelings about this. I want my son to get better, and I feel fortunate that he has not had any bad side effects from the high dose of Keppra he is taking. He does not have any learning or cognitive delays. I am scared now that adding Topamax is going to give him cognitive or learning problems. Is it so bad to have light nocturnal seizures? Does anyone here have a child on both Keppra and Topamax? I feel so confused about the best way to proceed.
Would You Add Topamax?
- Thread starter Starburst
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Topomax has a reputation for cognitive side effects (nickname = "Dopomax"), so I think you are right to be cautious about adding it to the mix. Are his nighttime seizures increasing or progressing in any way? If so, then it's worth considering trying adding a different med or trying a new one. But if the seizures are light in nature, and are basically holding steady (or decreasing), I would think it's okay to be conservative and hold off on a new med, while keeping a close eye on his symptoms.
You might want to try a small magnesium supplement before bedtime to see if it makes a difference -- magnesium plays a role in relaxing muscle tension.
You might want to try a small magnesium supplement before bedtime to see if it makes a difference -- magnesium plays a role in relaxing muscle tension.
KarenB
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Our son was on Topomax from age 2 to age 6. It controlled his nocturnal seizures extremely well -- he only had one seizure in 3 1/2 years. At a low dose (for the first 3 1/2 years) he had no noticeable side effects, except that he didn't sweat. However, when he was 5 years old, the medication no longer controlled his seizures completely (he had 3 seizures at age 5), and the dose was increased several times over that year. That year, he lost about 90% of his spoken language, and has not regained it even after being off of Topamax for 3 years. Our neurologist said this is a common side effect of Topamax, but he's never had a patient who hasn't regained the speech after discontinuing the medication. Part of the problem may be that Jon also has Down Syndrome, so what may be mild and barely noticeable cognitive decline in a normal child are much more defined in a child who is already significantly impaired.
KarenB
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Have you thought about the Ketogenic diet? It is extremely successful with infantile spasms -- Johns Hopkins is using it as firstline treatment now.
I can guarantee that your baby won't have any language or other cognitive delay from being on the diet (growth may slow slightly).
I can guarantee that your baby won't have any language or other cognitive delay from being on the diet (growth may slow slightly).