Phenobarbital for Treating Febrile seizures..is Anyone Currently Doing This?

Are these fever induced seizures? If so I have a friend that is dealing with this right now as well. I don't believe they have him on medication. I am pretty sure that they are being preventative in there approach. I would suggest putting him on a good vitamin as well. She is also a nurse so I can put you in touch with her if you would like to talk to her.

Hi M.,

My daughter had her first febrile seizure at 14 months. I researched long and hard then (17 years ago) and found that the phenobarbital that had been around for years (I believe that was what my mother gave me when I had mine as well) had no known LONG term side effects. I was terrified of most medicines especially the new ones that had not been around long enough to be tested for long term effects so we went with the phenobarbital. It worked keeping the seizures away but my little one was actually maniacal on it. (probably not any more out of control than some hyperactive kids these days but enough that I knew it was messing with her neurological system. I know this sounds weird but I could feel when a seizure was coming on......I spoke with the doctor and told him that she was not doing well on the medicine and asked if I could only give it to her when I sensed one coming. Even though he believed it should be constant in her system and even though he thought I was crazy, he told me to try it. She had two more seizures over the course of the next two years...they were when i wasnt with her.

Now that it's been years you may want to research the meds that were new then. My first suggestion, knowing what I know now, would be get your son to an upper cervical chiropractor. The spine controls the neurological system as well as the rest of the body and seizures are definitely an outpouring of something out of whack with the neurological system. My chiropractor (the largest pediatric clinic in the Southeast) has had wonderful results with febrile seizures. If you don't have one, go to www.upcspine.com and find one in your area. Interview them as you would any new doctor. Ask them how chiropractic helps the immune system. If they don't know, then youre in the wrong place. Keep looking!

Hope this information helps. PM me if you want to pick my brain....I'm willing to answer any questions you have.

M.

Was your son vaccine injured? When did the seizures happen? Was it after vaccines?
L.

Dear M.,

My oldest son had febrile seizures (like his grandpa). The first one was around 14 mos, second one was around 20 mos. I would NOT put your kid on Phenobarbital. That is a strong and controlled substance. Febrile seizures cannot be prevented by taking that medicine or any other seizure -preventing medicne. They are cause by the body not handling well as sudden spike in temperature, the fever doesn;t have to be high, just a quick change in temperature. These meds have side effects too. I was deployed in Saudi Arabia when my son had multiple febrile seizures in one day. My parents were taking care of him and the Pediatrician put him on Phenobarb. When I came to pick him up at 2y 1 mo. he had become a terrible kid, he was my first so I chucked it up to him being in the terrible twos and me been gone for 5 months. Upon returning home, I took him to a Pediatric Neurologist and he told me about febrile seizures not been able to be stopped by meds and my son NOT been in his terrible twos but affected by the meds. We weaned him off and then he was fine. Neither my father nor my son had any seizures after turning 2 years old. My dad is 69 y/o and my son is 21 y/o now. You just have to monitor your baby closely when he has one. Chances are your son will never have another one, and he will outgrow them forever in just 5 months. My advice is DON'T go there!

I had a skull fracture when I was 18 y/o and had a seizure. The docs prescribed me Phenobarb for life. Then they said maybe for only 5 years. I stopped taking it after 1 year and nothing ever happened other than I REGAINED my sense of smell. I believe the Phenobarb made me lose it. My reason for believing this is that when I was in the hospital (for 2 weeks) after the skull fracture and finally was allowed to eat, food tasted fine. Then a few days later when I left the hospital, I couldn't smell anything and food tasted horrible. It only tasted like acid or petrochemicals. The only things that would taste okay were sweet things. After I stopped the Phenobarb, I slowly regained my sense of smell (not totally as before) but was able to eat again with pleasure and smell most things. A lot of smells have to do with memory so I knew they weren't the same but I relearned them! Anyway, that's another reason NOT to put your baby on that drug.

Best wishes and God bless!

My sister took that med for a grand mal seizure she had when we were 5. It was a teeny tiny pill and I don't remembet how long she had to take it, but she never had another seizure again. Best of luck to you mama

Frankly, I had heard long ago that phenobarbital can cause a decrease in IQ...

I just googled it, and found this abstract (short summary) of research done on that... granted, it was done in published in 1990 (New England Journal of Medicine), but they were using it for febrile seizures, also...

http://www.nejm.org/doi/full/10.1056/NEJM199002083220604

I would really question whether it is worth the risk, although I do understand what the neurologist is saying, that since they are becoming such long seizures, there is risk of permanent damage, also.

btw... I have epilepsy, and have had 2 grand mal seizures. I've been seizure free for over 13 years, though. I'm not currently on medication. They felt the seizures (in my case) were caused in part to some medication I was taking. I couldn't tolerate Dilantin, and used Tegretol very successfully.

I know this may not be what you want to hear but.if.you're questioning the neurologist, you need to get a second opinion from another.neuro. I see you're in Arlington. Try cooks.children's in FW or if that's where you've been try Children's in Dallas or another Children's location. Understand that neurology.is.not something to be taken.lightly and EVERY patient is.different. Only.you and your neurologist can make these decisions. Best of luck!

I don't have children with seizures. I'm a special Ed teacher with two students in my class with seizures. They are not to be taken lightly. If their seizures last more than a specified time period (2-5 minutes according to the child) they have to be given Diastat in a rectal gel formula. They can be life-threatening otherwise.
Your son is in ICU. It is pretty serious. He has a history of seizures. The doctors are probably right in their approach. I know doctors are not perfect, but they are the ones with the medical degree. Neurology is highly specialized. It is brain surgery. Seizures can cause brain damage over the long term. It is imperative to get them under control.
As far as that study in which phenobarbitol is linked to low IQ, that's rubbish. I didn't read it but I can already tell you that they did not take normal kids and test their IQ pre and post medication administration. Why would they give healthy children that medicine? They gave that medicine to kids that suffer from seizures. Seizures have been shown to damage areas in the brain after awhile, so hence the lower IQ.
Your child will be post titic (sp?) after a seizure meaning very sleepy and lethargic. The medicine can have then same side- effects, but will be less as tolerance is built. The added benefit of the medicine is no seizures.
Seizures are scary business. The kids can die from them. They can stop breathing. What if they happen in the middle of the night and everyone is sleeping and no one knows to intervene? Please take the doctor's advice. You are free to get a second opinion, but don't be one of those parents that will see twenty doctors and 19 say the same thing, but the 20th says what you want to hear so you go with that one. I agree that we should question doctors, but then we have to LISTEN to the answers and determine if the answer is reasonable. Determining if something is reasonable is a little tougher since you may not have a medical degree. If something sounds off, ask for more clarification. Do it as a parent that truly wants to be knowledgeable of your child's coNdition, not just a nagging parent. I don't think you are that kind of parent, but I notice a lot posts suggesting that medicine is not necessary and that there are alternative methods. Your baby's brain is not something to take risks with. Good luck and I hope they are under control and he can get off the Mede.

I don't understand why they would medicate him. My son had his first right after a vaccine when he was 1. After that, he had them quite often. One actually lasted 20 minutes. Your child will either grow out of them, or continue to have them. I had my son on some kind of medicine, but then stopped it because it was unecessary. I would rather my kid have a short harmless seizure, than to drug him so he has no more, but with possible side effects. I would take him to a chiropractor. They can do wonders for your child.

I was put on that medication when I was 10 years old and having mini-seizures (not grand mal.) I was extremely allergic to it and it caused more seizures (among other symptoms) so they doubled my dose. It made me really sick. I was eventually able to treat it naturally when my mom took me to a homeopathic doctor. But my seizures were totally different than your son's. Get a second opinion or find out another option if you're having trouble with the medication or if you're uncomfortable with it. Good luck!!

I too would question if this were vaccine-related as that is pretty common "side-effect" of them though many doctors will disagree with that. If you are open to alternative health care I would contact a GOOD chiropractor. Mine is Dr. Jiim Bob Haggerton in Hurst and he KNOWS his stuff really well, I would go visit with him. If your insurance won't cover it, his visit is $52 I think. I would NOT do phenobarbital unless absolutely necessary and I would get a second (and third maybe!) opinion just to be safe. That is a VERY dangerous drug that WILL change your child. Sadly, my mom didn't know of it's dangers until after my brother had been given when he was younger (for "ADHD") and afterwards he had constant problems with school. Years later an article came out saying that the drug had caused learning disabilities in some children. So really research it. Maybe they changed it since as my bro is 34 now but still....check it out first! Good luck!!