Myoclonic Seizures

[rajkumar_pb]

I have a son who is 5 months old, had seizure 3rd day after he born. Then he was in ICU for a month. After that, he was advised to take phenobarbitone. But since seizure is not controlld, neurologist suggested to take Levipil along with that. It decreased to a level, but not completely controlled. So he advised us to take EEG and result was abnormal. He said, my son have too much electrical charge in brain which is affecting brain, so there will developmental delays. And he suggested us to give Valparin along with previous medication. After taking Valparin, he was good. Seizure free for 10 days.

But since we wanted second opinion, we went to a guy and he prescribed Lonazep and Nootropil over Valparin and Frisium. After my son started taking Lonazep and Nootropil, he is not doing like he did before. Now he started giving a small jerk like movement, by moving his right hand. So we took him to NIMHANS,Bangalore and they told it is rare condition and can be treated only with ACTH. But the next thing they said, i was dead inside. They said, even by taking this ACTH, i should not expect anything positive. Right now, he is taking Lonazep, Nootropil, Levipil and ACTH.

Does anybody have same issue and taken ACTH? Was it helped your kid? How about developmental growth?

Please help me with this....

[rajkumar_pb]

Thanks for the reply. So far we have given my son 2 ACTH doses, alternate 30IU. We noticed the jerks has been reduced but not completely. So Dr.Kaur, is this how ACTH works? I mean will it take some time to completely control seizure or right away?

I am so afraid right now. And what about the Developmental Delay? Can you explain a bit?

I am thinking about taking my son to Apollo Hospital, Chennai.What is your opinion on that? I already consulted in NIMHANS as well as Dr.Suresh Rao Aroor. Both gave me same response.

So will it be good idea to take him to Apollo? I need your opinion since you are a reputed doctor. Please help me. I will do anything to have my son back.

[Bhupinder Kaur, MD]

Hello,
Several antiepileptic drugs and a hormonal therapy can be used to treat infantile spasms and valproate is tried as first line drug. Sometimes doctors start withv igabatrin (Sabril) which is often used as the initial therapy because it is relatively safe (especially for short-term use) and effective. If vigabatrin does not control the seizures in 3 or 4 days, adrenocorticotropic hormone (ACTH) is usually used next. ACTH stops seizures in more than half of children with infantile spasms. Often the baby will be given another anti-epileptic drug after the spasms have stopped and the ACTH therapy has been completed.

It is very difficult to precisely confirm a diagnosis without examination and investigations and the answer is based on the medical information provided. For exact diagnosis, you are requested to consult your doctor. I sincerely hope that helps. Take care and please do keep me posted on how you are doing.

[rajkumar_pb]

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