Phenobarbital

Dear M.,

I would like to have you talk with moms who had great resault with supplement that has no side effects after going through same. I am in west Plano, let me know if you are interested.

Blessings!
A.

You have received a lot of advice so far. I have three kids and my newborn is currently taking pheno. He is only 4 months old now but a little over a month ago was hospitalized for bacterial meningitis. We thought he was having seizures, due to his high fever-hard to tell in a baby. But anyways, he will be on it for at least six months. At first after he would have his dose he would be really tired and sleep. Now that he is more used to it, it doesn't seem to bother him. I haven't noticed any other side effects. Hope this helps! I am sure you will make the right decision!

M.,
I wanted to share my experience with you and let you know that I am a 48-year-old mom who had to take Phenobarbital for 8 years of my childhood due to seizures. I no longer require it and have had no side effects from the medication. I think the benefits of the medication outweigh the risks of seizures, but that is a decision you will need to make. Granted, I took this medication a loooong time ago and there may be other options for your child now. I have gone on to live a normal, seizure free life and am happily married with two children. I hope this information can help you decide what to do. C. A.

Dear M.,
I don't know the answers but check out this web site and I believe you will be able to find out some answers. Just click on different things there .Hope they will be able to give you some answers. I do know that the phenobarbital isn't good.God Bless and good luck
J. G

Hi M.,
I am sorry you are faced with such a difficult issue.
My son had unexplained seizures from the time he was 9 months until last year. drs wanted to medicate him but I chose not to medicate. I have discovered a chiropractor (go figure) that determined a gluten allergy, possible side effects from vaccinations and also a problem at the top of his spine. My son is gluten free and has not had a seizure in one year. You will be faced with so much information and it is difficult to sort through it all. My deciding factor on NOT medicating was that medicines only mask the real issue. I wanted to know what was really going on first and see if there were natural alternatives. Your son has been through so much - I pray for discernment and for this problem to be resolved in a manner that gives you peace.

My daughter was on phenobarbital for febrile seizures from the time she was about a year old until she was about 6. We couldn't tell that it had any negative effects on her at all. She was always a very happy, active child and has grown into an intelligent, outgoing, independent young woman. God bless you as you care for your son.

My sister grew up taking Phenobarbital from the time she was 4 and she has bad side effects like not being able to sllep for days at a time then crashing whenever and where ever she was school was very hard for her to stay focused and the doctors told my mom for years it was the only option she ended up quiting high school at 16 and eventually took herself off the medicine to feel normal. She had a lot of seizures over the next few years until she got a new Dr. that put her on Tegretol she loved it and still takes it and she is getting ready to turn 30. I would at least ask your Dr. if Tegretol is an option for your son. My prayers are with you and your family.

Wow! Are you overwhelmed with advice yet? I started having seizures when I was 19 (over 20 years ago). One of the first meds they put me on was Phenobarbital and I was on it with another med for several years - I'm thinking about seven or eight years. The additional med varied as they would try one for a couple of years and then switch it out for something more effective or that worked better for my body. I think it is fairly common to have to try several things in order to find the right one. Pheno made me very sluggish and I have a lot of blanks in my memory from that time period. This was a long time ago and anti-convulsants have advanced a good bit since then. There are meds that are geared specifically for partial complex seizures without being nearly as harsh on the system. I was surprised to hear of a doctor still prescribing such a strong barbiturate for seizures. However, I agree with the person who told you not to go off of it without talking with a doctor. I would like to recommend Texas Child Neurology in Plano. My daughter goes to Dr. Chudnow there but they have several top neurologists. The nice thing is that it is completely geared to children. Best to you.

My daughter was on phenobarbital for a year as we tried to discover the source of her seizures.She was not an active baby. After she took her medicine, she fell asleep. After she came off the drug, we basically were starting over with a brand new baby. She had stained teeth but no one ever put that together with the pheno, even though the staining was only ok the part of the tooth that was exposed to the medicine. Think carefully about this before hurting your child. Is it the only med to use? My daughter is now 3 but has met the developmental milestones of about a 9 month old. She has been in therapy since coming off the drug but has not caught up yet. Seek other options before starting on phenobarbital.

I have zero experience with phenobarbitol. I just wanted to caution you against stopping medication without your doctor's supervision. Uncontrolled seizures can cause permanent brain damage, which can lead to more severe seizures - to the point that the seizures can directly cause death.

Please weigh your side effects of the medication against the side effects of leaving the disease untreated - that goes for anything, not just phenobarbitol / seizures.

S.

Hey M.,

I am now 42 yrs old and was on Phenobarbital from the time I was 9mths old til I was almost 6 yrs old. Since I went a year without seizures (from 5yrs old to 6 yrs old), they wiened me off of it... and miraculously I have never had another seizure. When I was on it, I was very lethargic but it did keep my seizures away... and it is truly a miracle that I outgrew the seizures and have never had a problem since. My mom and dad said I would sit with the same book for an hour because I was really kind of out of it at times; but over the long run, I didn't have any lasting side effects... I went on to be a very good student in school and continued on my life normally... thought you might want the perspective on someone who was on it at an early age and is now an adult... feel free to email me with any more questions... T.

M.,

You got great advice from Mary B regarding a possible gluten problem. Here is an article on the connection between seizures and grains:

http://articles.mercola.com/sites/articles/archive/2003/1...

More specifically, it is likely "gluten" containing grains, which are wheat, barley, rye and most oats available in the US(due to contamination), that are causing the problem.

He may not have full blown Celiac, but only gluten intolerance. To test for gluten intolerance, go to this website www.enterolab.com and order test kit online. No doctor referral needed. Send in stool specimen and they email you the results. SOOOO easy for a baby. Exercise caution in consulting pediatric GI doctors. They test the blood, which Dr. Fine explains at Enterolab does not identify many gluten intolerant people. (I personally tested normal in a blood test and extremely abnormal in a stool test). They will also put him through an invasive endoscopy procedure, which is often not useful in diagnosis. See Dr. Fine's position on this at this link:

https://www.enterolab.com/StaticPages/EarlyDiagnosis.htm

The Enterolab website also lists "seizure disorders" as a red flag for testing for gluten intolerance under the "FAQ section of the site.

Gluten intolerance has a genetic component. Gluten intolerance in a mother during pregnancy can lead to folic acid deficiency, and any associated birth defects in the baby. See this article for info about the connection between birth defects (including congenital heart defects) and folic acid deficiency. The article focuses on drugs as the cause, but gluten intolerance can also cause severe folic acid deficiency.

http://articles.mercola.com/sites/articles/archive/2000/1...

If a gluten problem is found, there is cause to have everyone in the family tested, regardless of whether you believe that person is suffering any outwardly apparent symtpoms of gluten intolerance.

Good luck in your research.

my son used to be on phenobarbital & i did not like it , you could tell he was drugged up & really didnt do much but sleep & stay in a "zoned out" way most of the time...he is now on keppra & we like it, it has controlled the seizures without the catatonic state.

My daughter has been on a variety of seizure medications throughout the years. They ALL have their benefits and their side-effects, and any individual could probably "get by" with any of several different drugs. Key for us has been communicating openly with her doctors (we don't believe doctors know everything), following our own instincts about our daughter, and speaking up for what we believe she needs. When we've felt the side-effects have been too much to live with, we've requested trying another drug. We've always been happier with the change we requested.

It IS hard giving my daugther a drug I know may harm her in some ways. But the alternative is not giving her anything to control the seizures, and seizures (when they are frequent or long or intense) can cause damage of their own. It's all about being informed and doing the best we can. And what we do now may need to be changed in the future. If only kids came with instruction manuals ....!!

Hi M.,
I don't know much of the side effects, but my sister was on this when she was a year old for fever seizures. She is now 23 and will be graduating from college in December. Hope this may ease you mind with a success story. She was on it for about 6 months (I think). If you need more info, I can ask my mother if she noticed anything. Email me at ____@____.com

All 3 of my daughter's children had seizures on their 5th day of birth. The oldest (9) went pheno when he was around 1. The middle child went off at 6 months. However, the youngest (3 in Oct.) continued on pheno until she was, I believe 1 or maybe 2, and now is on another med. The kids never had adverse reactions to pheno. The youngest has now been diagnosed as an epileptic. My daughter could probably help you--her email is ____@____.com. I will tell her that I sent you her email.

I will keep you and your children in my prayers.
C. G.

Please read www.familyhopecenter.org. Call them at ###-###-#### and ask questions of their staff after you've read on their site. They can help your son's CAUSE of seizures and they don't use medications.

Both of my kids were on Phenobarbital as newborns (4 & 6 days old) due to neonatal seizures. The loading dose really knocked them out but were okay once the medications leveled out. We really wanted them to be on the lowest dose possible & get off as soon as the doctor thought possible. They were both on for 4-6 months, have outgrown their seizures & are thriving today at 6 & 7 years old. Good luck.

M.,
My brother is 46 and has been taking this drug since he was diagnosed with epilepsy at 9. He has gone off and on of it his whole life and it has been the one that has helped the most.It is an old drug but one that works. i do not know why the doctor would suggest this, but he has reasons. If you trust him, I would try it. My brother has 3 kids and has dealt with the seizures his whole adult life It is nice to hear about someone that has actually lived on it.
Good luck to you and May God bless your son.
C.

I have to ask - Do you have a full time nurse? I ask, because this is the type of work I do. I take care of medically dependent children in their homes. Anyway, I have taken care of children on phenobarb and I think that most of the moms have had to outweigh the side effects of the meds versus the benefits to the child. If you have concerns you should talk to your childs doctors. Good Luck A.

Wow! My heart goes out to you with prayers. What a long 5 months you've had.

I'm a neuro rehab therapist but have mostly worked with adults for my career. For an antiseizure med, phenobarbital isn't that common anymore. There's so many others, all with their lists of side effects. All people, and I'm sure kids react differently, so the doctors mostly have to try what fits that person/child. There's also Limictil, Depokote, Tegretol, and Keppra. I know them by ear, so please don't trust my spelling.

I'd do a search for anti-seizure medications, both for adults and children for your own education.

K. M