Phenobarbital, Babies & Developmental Delays

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My son is 8 months old and started Phenobarbital for simple partial seizures (30+ a day) a month ago. He had an intraventricular hemorrhage in utero and has a shunt. The doctors increased the Phenobarbital dosage several times since it wasn't controlling the seizures and he is now at the maximum "therapeutic level."

I've noticed that he can't support his weight as well on his legs, cannot sit as well and cannot hold his head as well since the last dosage increase (60mg per day). He seems generally floppy and regressing physically. He also gets sleepy faster and is less responsive to us. We just found out that Phenobarbital can decrease muscle tone, after we asked his doctors what other side effects there are besides sleepiness.

The seizures seem to be less but sometimes last a few seconds longer. Lately I am worried about the medication not helping enough to justify the risks I keep reading about. *Can Phenobarbital cause delays in babies if it's taken for a few months?* Also, if his seizures were mild and not troubling him (eyes turn and sometimes his head turns), is it still better for him to be taking a high dose of Phenobarbital? How can I make this decision? His doctors are impossible to get in touch with and ask questions.

I guess I worry whether we are doing the right thing. The Phenobarbital doesn't seem to be helping enough, and now they want to add a 2nd medication (Frisson?). I feel that the dose is already too high for him and am so anxious about how it is effecting him and what will happen in the future. *Is it true that the Phenobarbital will cause more problems?* Do some people chose to live with the seizures instead? These questions have been keeping me up at night.

I worry so much that we may be doing more harm to him now. Any advice or resources is appreciated.

Thanks-- Amanda, Benji's mom

Comments

Re: Phenobarbital, Babies & Developmental Delays

Submitted by bharathat5 on Fri, 2012-11-09 - 05:09

Hi All,

My 4month old son never had fits as such... when we took EGG at his 21st day, it showed as "ab normal", I am not sure is that the right time to take EGG in his 21st day. Doctor suggested us to give Phenobarbital...we are still continuing the same drug...Now is he 4 months old...very less responsive...I am scared to continue this drug.. Doctor told us to continue the same drug for 3 years..Here in my place doctors never respond properly to our questions...I worried about my kid.

Please help me to find the solution...should I visit another doctor in bigger town?

Thanks,

Bharath

Hi All,

My 4month old son never had fits as such... when we took EGG at his 21st day, it showed as "ab normal", I am not sure is that the right time to take EGG in his 21st day. Doctor suggested us to give Phenobarbital...we are still continuing the same drug...Now is he 4 months old...very less responsive...I am scared to continue this drug.. Doctor told us to continue the same drug for 3 years..Here in my place doctors never respond properly to our questions...I worried about my kid.

Please help me to find the solution...should I visit another doctor in bigger town?

Thanks,

Bharath

Re: Phenobarbital, Babies & Developmental Delays

Submitted by Colel on Wed, 2009-09-30 - 16:35

Hi Amanda

My situation is different to yours in that my little boy was born 3 wks early & had lots of seizures in his first 72 hours, they tried a milder drug but phenobarbital was the only one that stopped the fits.

He was very dozy & really didn't look with it (although hard to tell in a newborn) but he slept loads & rarely cried. Like you I was concerned of the effects & noone could/would tell me anything so it was interesting to read about the muscle tone problem you mentioned as the doctors were saying he had cerebral palsy too.

Fortunately he came off phenobarbital at 2 months & (touch wood) has not fitted since, however I learnt from a very helpful neo-natal nurse who I contacted via a charity organisation that phenobarbital does space you out, there are windows of greater consciousness & that was when I had to try & feed my baby as he was losing weight also.

Regards developmental delays, the nurse told me, that it varies on the child & doseage- some dont have any, some will just pick up & carry on after the medication stops regardless of the gap & some will be delayed in their development by the amount of time on the medication.

I really dont know if this would apply to your little boy as he is older than my son was at the time, but we were so fraught and had no access to the internet so I would like to think that any little bit of experience would help.

Regards

Luisa

Hi Amanda

My situation is different to yours in that my little boy was born 3 wks early & had lots of seizures in his first 72 hours, they tried a milder drug but phenobarbital was the only one that stopped the fits.

He was very dozy & really didn't look with it (although hard to tell in a newborn) but he slept loads & rarely cried. Like you I was concerned of the effects & noone could/would tell me anything so it was interesting to read about the muscle tone problem you mentioned as the doctors were saying he had cerebral palsy too.

Fortunately he came off phenobarbital at 2 months & (touch wood) has not fitted since, however I learnt from a very helpful neo-natal nurse who I contacted via a charity organisation that phenobarbital does space you out, there are windows of greater consciousness & that was when I had to try & feed my baby as he was losing weight also.

Regards developmental delays, the nurse told me, that it varies on the child & doseage- some dont have any, some will just pick up & carry on after the medication stops regardless of the gap & some will be delayed in their development by the amount of time on the medication.

I really dont know if this would apply to your little boy as he is older than my son was at the time, but we were so fraught and had no access to the internet so I would like to think that any little bit of experience would help.

Regards

Luisa

Re: Phenobarbital, Topamax, Babies & Developmental Delays

Submitted by BenjiMom on Thu, 2009-10-01 - 17:47

Thanks for your reply, Luisa.

My baby is now still on Phenobarbital, although the neurologist agreed that it wasn't helping enough and wants to wean him off. But not for another month while he increases his dosage of a new dug, Topamax, to maximum level. At this rate, he won't be off the Phenobarbital (which they want to decrease by half a pill every other week) for 18 weeks!!! I am so sad at how floppy and less responsive he is, and he is now 9 months old. The Topamax seems to make him more irritable too, and he is still having a lot of seizures every day (simple partial). :(

Any advice regarding Topamax from anyone is appreciated. Any advice at all, really, since I feel so inexperienced and helpless. It seems to take so long for the doctor to do anything and he is not paying attention to a young baby who is still having 30-45 seizures a day as he must wait another month for help.

I feel we are losing precious time. I feel he is not learning as well as he could. He seems less responsive and with it. I feel he is regressing, and I am sad to miss the baby he was a few months ago (even with the seizures, which are very mild). It's sometimes hard to remember how he was a few months ago and know whether it's his natural development or the drugs affecting him.

~ Amanda

Thanks for your reply, Luisa.

My baby is now still on Phenobarbital, although the neurologist agreed that it wasn't helping enough and wants to wean him off. But not for another month while he increases his dosage of a new dug, Topamax, to maximum level. At this rate, he won't be off the Phenobarbital (which they want to decrease by half a pill every other week) for 18 weeks!!! I am so sad at how floppy and less responsive he is, and he is now 9 months old. The Topamax seems to make him more irritable too, and he is still having a lot of seizures every day (simple partial). :(

Any advice regarding Topamax from anyone is appreciated. Any advice at all, really, since I feel so inexperienced and helpless. It seems to take so long for the doctor to do anything and he is not paying attention to a young baby who is still having 30-45 seizures a day as he must wait another month for help.

I feel we are losing precious time. I feel he is not learning as well as he could. He seems less responsive and with it. I feel he is regressing, and I am sad to miss the baby he was a few months ago (even with the seizures, which are very mild). It's sometimes hard to remember how he was a few months ago and know whether it's his natural development or the drugs affecting him.

~ Amanda

Phenobarbital, Babies & Developmental Delays

Comments

Re: Phenobarbital, Babies & Developmental Delays

Submitted by bharathat5 on Fri, 2012-11-09 - 05:09

Re: Phenobarbital, Babies & Developmental Delays

Submitted by Colel on Wed, 2009-09-30 - 16:35

Re: Phenobarbital, Topamax, Babies & Developmental Delays

Submitted by BenjiMom on Thu, 2009-10-01 - 17:47

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