Baby with idiopathic epilepsy; should we wean off phenobarb?

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sazzy

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Hello, I am new here. My daughter is 10 months old and has been struggling with seizures since she was 4 months old (partials that usually generalize into tonic clonic). She has undergone many tests and all have come back negative. Her development is normal. She has been hospitalized 6 times. She is taking phenobarbital., clobazam (frisium) and keppra. She has had good seizure control since being on a therapeutic dose of keppra (5 weeks seizure free then 3 seizures while sick with a fever; now one week seizure free) My question is : should we wean the phenobarb.? She has been taking it since the beginning of this journey. It has never given her good seizure control although it was increased 5 times... We do have a ped. neurologist but she is on sick leave...

I am happy to have found this site! Thank you!
 
sazzy

Dealing with epilepsy is hard enough as an adult but you have to make decisions for your 10 month old this must drive you up the wall sometimes,sorry. As for weaning of the phenobarb wait for the pediatric neurologist to come back there is a reason for the medication. On its own it may not have given control but interaction between the drugs could be the reason for the control so please wait.
 
Hi sazzy

Welcome to CWE. I don't have any advice about your daughters meds, but just wanted to say hello. I can't imagine what it must be like watching her go thru that. **hugs**
 
Thanks for the replies. I know that I should wait for the neurologist but I just don't want my baby to take one more drop of anything that isn't helping... She has hit all of her developmental milestones and I want her to keep doing so! We are a "chronically optimistic" family and we all think that the last seizure of a cluster will be her last seizure ever... I am tired of being sad, terrified and angry. I choose hope, optimism and love. And I savour every seizure free day :)
 
I would never do any med changes without consulting the neurologist. At the same time I highly advice any child on phenobarbital to get off as soon as you can. Unless it is really the only thing that can keep your child seizure free no child should be subjected to this horrible drug. My son is finishing his phenobarb wean in the next few weeks. It is a complicated drawn out process, so don't do anything without talking to your neurologist, but get your child off it!
 
Welcome :) seriously phenobarb may be old but it is a drug that stops status...since your baby has morphing seizures I have them too, there may be a risk of status. Please check with your doctor, I would not make any changes especially to phenobarbital, a barbiturate, which withdrawl is more seizures sorry :(
 
Hi and thanks for the replies. We saw our ped. neurologist and we are now weaning off the phenobarbital very slowly :) This makes me happy as I am seeing more sparkle in Lulu's eyes everytime we decrease the dose. She is doing well; She turns 1 in a month & is very active and hitting all milestones (she had stopped babbling until we started to wean the phenobarb). She is still on keppra and clobazam. Last inter ictal eeg was normal. Last seizure was 2 weeks ago and for the first time ever, it did not cluster into more seizures (she would always have at least 4 in a few days). Staying positive. Thanks!
 
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