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Phenobarbital, Babies & Developmental Delays

Fri, 08/28/2009 - 13:21

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, Topamax, Babies & Developmental Delays

Submitted by sunwelch on Fri, 2010-04-23 - 08:56

Amanda -

We switched to Topamax when my daughter was 9 months old.  She had been a "zombie" on other meds for approx 5 months.  Topamax was the best thing that ever happened to her.  In her first 3 months on Topamax she learned to sit up, crawl, pull to standing and begin "cruising" around furniture.  She also started feeding herself and eating (on the other meds she would not tolerate any type of "solid" food...stricktly bottle fed to that point).  We have recently started to have seizures again, and can't figure out why.   We went 5 months on Topamax (with Keppra as well) and were completely seizure free and thriving.  I truly don't know now if she's not tolerating the medicine or if something else has changed...we're off to the Dr. today! 

 Hope this helps!

Sunny

Amanda -

We switched to Topamax when my daughter was 9 months old.  She had been a "zombie" on other meds for approx 5 months.  Topamax was the best thing that ever happened to her.  In her first 3 months on Topamax she learned to sit up, crawl, pull to standing and begin "cruising" around furniture.  She also started feeding herself and eating (on the other meds she would not tolerate any type of "solid" food...stricktly bottle fed to that point).  We have recently started to have seizures again, and can't figure out why.   We went 5 months on Topamax (with Keppra as well) and were completely seizure free and thriving.  I truly don't know now if she's not tolerating the medicine or if something else has changed...we're off to the Dr. today! 

 Hope this helps!

Sunny

Re: Phenobarbital, Topamax, Babies & Developmental Delays

Submitted by Antonia S on Wed, 2010-10-20 - 22:41

Dear Amanda,

 I read the your original post as well as the post that follow and I wanted to reply with as much respect as possible for the post above mine. 

 There is a lot of misconception about Phenobartial...I stress that I am not a doctor however Phenobartial is safe to use as long as your child is being properly montiored by a neurologist and the levels in the blood are within theraputic range.   I know several person who have been on this medication and they are fine.

 

Phenobartial is only dangerous when one of the follow occurs:

 1) the person is allergic to it and has adverse side effects

 2)its not in theraputic range in the person blood

3)it is used for a prolonged use of time (many many years)

This is why it any person with seizures and taking meds should be followed by a doctor ask questions (like you are doing) and look at the person's overall case and health....

 Yes this medication as with all medications has side effects...in the early use of the medication it can cause floppiness, double vision, headache etc however after a few weeks (depending on the individual) these symptoms go away...

My son has been on the medication since he was just shy of 2 years of age and has just be taken off of the medication as yes the doctor thinks prolonged usuage may cause issues later on however it stopped/controled the seizures which were dangerous themselves as he was very ill with them...He is a bright loving 5 year old who is no worse because he had the medication-however the damage from the long seizures could have killed him sometimes you have to way the options....

From the sounds of it there was issues either during birth or shortly after, I would disscuss his lack of progress at this time both with you neurologist and family doctor to talk about medication and any other issues that may be taking place....

Was he meeting milestones before?  Was there any suspected brain trauma?  I would want to rule out anything else that may be going on aswell not just the medication....

 

Dear Amanda,

 I read the your original post as well as the post that follow and I wanted to reply with as much respect as possible for the post above mine. 

 There is a lot of misconception about Phenobartial...I stress that I am not a doctor however Phenobartial is safe to use as long as your child is being properly montiored by a neurologist and the levels in the blood are within theraputic range.   I know several person who have been on this medication and they are fine.

 

Phenobartial is only dangerous when one of the follow occurs:

 1) the person is allergic to it and has adverse side effects

 2)its not in theraputic range in the person blood

3)it is used for a prolonged use of time (many many years)

This is why it any person with seizures and taking meds should be followed by a doctor ask questions (like you are doing) and look at the person's overall case and health....

 Yes this medication as with all medications has side effects...in the early use of the medication it can cause floppiness, double vision, headache etc however after a few weeks (depending on the individual) these symptoms go away...

My son has been on the medication since he was just shy of 2 years of age and has just be taken off of the medication as yes the doctor thinks prolonged usuage may cause issues later on however it stopped/controled the seizures which were dangerous themselves as he was very ill with them...He is a bright loving 5 year old who is no worse because he had the medication-however the damage from the long seizures could have killed him sometimes you have to way the options....

From the sounds of it there was issues either during birth or shortly after, I would disscuss his lack of progress at this time both with you neurologist and family doctor to talk about medication and any other issues that may be taking place....

Was he meeting milestones before?  Was there any suspected brain trauma?  I would want to rule out anything else that may be going on aswell not just the medication....

 

Re: Phenobarbital, Babies & Developmental Delays

Submitted by Colel on Sat, 2009-10-03 - 15:48

Hi again Amanda

I really feel for you all & hope that the next 18 wks go quickly for you - hopefully Benji will get back to himself soon.

Best wishes

Luisa

 

Hi again Amanda

I really feel for you all & hope that the next 18 wks go quickly for you - hopefully Benji will get back to himself soon.

Best wishes

Luisa

 

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