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BenjiMom

Phenobarbital, Babies & Developmental Delays

Topic: 

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

My brother has been on phenobarbital since he was 10 now 35. He started taking it after a four wheeler accident. I have noticed a big differance in him since. He is very slow. Cant hold a job. Never finished school. He was always good at school until the accident.He sleeps alot. He really isn't the same person he was. I don't know if it's from the med or the accident. Know one knows.I can also say it worked for him. He hasn'thad a seizure since he was 10 .I on the other hand tried to take it when I came down with seizures at 30. It wouldn't work for me. I was on it for 1 month. It just knock me out. Hope this helps.

Re: Phenobarbital, Babies & Developmental Delays

I have been on phenolbarbital since a child and am now 66 years old. From what i have read in this blog, apparently I am very fortunate. I have been a successful business person who is now retiring. I saw my short term memory get weak, however found out that it was due to the Dilantin that I also take. I have  to assume that there are others like myself, who have not been negatively affected by their meds.

Re: Phenobarbital, Babies & Developmental Delays

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

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

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

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

Re: Phenobarbital, Topamax, Babies & Developmental Delays

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

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

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

 

Re: Phenobarbital, Babies & Developmental Delays

Amanda,

 I feel for you and Benji,  I am 36 and was diagnosed very early in life myself (at age of 6months) I never new what the medication was that my mother was giving me but new that it did make me drowsy (it was phenobarbital)  I have been on a variety of drugs over the years and frisium was one of the better ones for me but it could work differently on Benji than it did on me.

 

I hope that you find the rught medication combination to help Benji live a normal life or as normal as he can live.  Hopefully he can outgrow the seizures.

 

Best wishes,

 

Rahim

Re: Phenobarbital, Babies & Developmental Delays

Hi Amanda,

 My daughter was on Phenobarbital for almost 6 months.  I did notice a big difference once she was taken off the medication and placed only on Keppra.  While on the pheobarb she would just lay there.  I took it as she was a new born but when I saw other babies her same age moving around is when I asked her neurologist about it.  He told me the Phenobarb would make her sleepy and very irritable.  Although between the Phenobarb and the Keppra she had absolutly no seizures but at what expense.  Finally the dr took her off the phenobarb and its like my princess has blossomed into this thriving baby girl.  I do believe the Phenobarb caused more harm then good.  I hope they can find a medication that will help your baby thrive and be seizure free.

Re: Phenobarbital, Babies & Developmental Delays

I just want to share my experience about my daughter and phenobarbital.  My daughter was 7 when she had her first seizure and was admitted to the hospital.  She was placed into a medically induced pentobarb coma while in the coma they put her on phenobarbital and dilantin the dosing was so high.  They didnt expect her to make it through.  They told me with her severe epileptic condition this was neccesary at the time.  After 1 month of being in the coma they still could not control her seizures they took her out and she remained on phenobarbital 97.2mg twice a day for appx 6months when we found another neurologist and she started weaning her off the phenobarb.  My daughter Summer was a healthy straight a student before her hospital experience.  Now she is in a lifeskills class diagnosed with developmental delay/mental retardation. I always wonder to this day if what they did in the hospital made her this way today.  I am ashamed to say that I should of researched more and protected my daughter.  I have had 2nd and 3rd opinions and no one seems to know what happened.  I hope Benji is well soon and he is blessed to have such a mother as you. Take Care...

Re: Phenobarbital, Babies & Developmental Delays

Although I'm not a parent, I was on that medication as an infant, so my parents told me. I too, had delays in development, didn't really start talking until I was around 2. (but said a word or two once in a while.) My parents weened me off of it, because I was seizure free for a while, and figured it would help me develop more, although I'm back on medication 20 yrs later. I managed to graduate high school and have and associate's degree. My doctor at at the time didn't think I would even make it through high school and said I would be a "special needs" child for the rest of my life--and I proved them wrong! I know it causes delays in development. I would maybe talk to his doctor to see if he can be on a different medication--I'm on Keppra, but not sure if it's for infants. The side affects are low--drowsiness in the first month, and blood work isn't required for it. I'm sure my parents wondered the same thing with me. I hope I helped some! Good luck!

Re: Phenobarbital, Babies & Developmental Delays

Don't give him that stuff anymore!  My brother was on Phenobarbital as an infant, ( I am sorry I dont know how long, probably about 9 months) and now although he is 24 he has been determined to be developmentally only 12.  He cant hold a job and is judged and ridiculed for his immaturity.  He also was very clumsy and uncoordinated throughout childhood.  My mom was told it was all because of the phenobarbitol.  He grew out of his seizures at one year or so.  He is extremely intelligent with school work kind of stuff but thinks he is a kid and plays with his neices and nephews like an adolescence.  He still lives at home and will probably never be independant.  I am shocked at reading this that they still use that stuff on babies!  I assumed it was outlawed years ago, cause they knew this about my brother 2o years ago.  It is not worth the trade.

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