weaning off phenobarbital need advice

my daughter janelle who is in the process of weaning her pheno. 5 months old has daily seizures averging 5-9 a day my question is has any parents been through this process, i understand phenobarbital has a long pastlife and remains in the system for weeks since janelles first dosage change was a month ago and labs on the first of this month, her level is 10 she usually ranges 35 or so.
i thought by taking janelle off pheno. she would be more awake, but all she does is sleep. she is also taking toppamax 125ml and 200ml bid of keppa.
would it be wise to try tampering her off keppra right away, and since she is still having seizures should we try another sz's med.?
i'm conveince toppamax is doing the trick-but if we go up anymore on the dosage she will never wake-up bad enough she already has trouble being able to drink a bottle .i wonder if i should be satisfate with the decrease of seizures and accept it for the way it is or continue the fight! and see if another medication is possible?
with not being able to enjoy normal baby milestones such has her first smile, favorite toy, words ect..
its hard to see her seize, and i really want to stop her seizures and let her have a chance to develope but i wonder if i could be rushing it and causing more damage?
just a curious mother looking forward to reading other concern mom/dads who have been in this situation responds-


Re: weaning off phenobarbital need advice

I can completely empathize with how you feel. Our son is now 12 months and he began to have seizures toward the end of his fifth month. Our son was on phenobarb for a short time, he had a bad reaction to the med, it actually made him worse. I believe it took about a week to wean him off, I did notice a difference pretty quick. We also tried Topamax and he did great for a month and a half, then the seizures came back and we began to gradually increase the med. The increase ultimately made his seizures worse so we had to stop. The one thing that have learned in these past few months, is that the medications take time to enter the system and reach a therapeutic level and even then, the dosages must be adjusted ever so gradually. In the beginning, I could not understand why it takes soooooo long and the thought of sitting and waiting is unbearable while your child is having up to 70 seizures per day! The doctors do seem to have a method to the madness and they want to make sure that a drug really does not work before starting a new one.
At 5 months, our son was the same, he had never smiled, he would not make eye contact etc. I can offer you hope, once we started the Topamax and reached a good level for him and the seizures stopped, it was as if I was given a new child. He began to smile, engage and seemed happy! It was like his brain was clear. Since then, he has made great strides. I can completely understand how frustrating and scary it is when you have to watch your baby seize and you feel like there is nothing you can do about it. We are still going through it now with our son, his current med. is just not doing the trick although it has helped him.
Waiting is a terrible thing but it seems the only choice that we all have. I truly hope that Topamax and Keppra help your daughter. Hand in there. A great book to read is "Seizures and Epilepsy in Childhood A Guide". The book really helps you understand the medications and how they work.
Best wishes

Re: Re: weaning off phenobarbital need advice

Hello~I really do not have any advice to give because I do not have a child with epilepsy.I do know that the meds take awhle to really get into your systom.I am so sorry that your baby and others have to go through this.It is so hard for an adult to understand their feelings...how does a baby understand theirs?God bless their little hearts and their parents.Your baby is just adorable...that darling smile and eyes that twinkle! God bless you all

*Peace I leave with you; my peace I give to you.I do not give to you as the world gives.Do not let your hearts be troubled,and do not let them be afraid.* ~John 14:27

Re: weaning off phenobarbital need advice

Hi sushina~I cannot relate to your situation as I do not have a child with epilepsy.This has got to be so hard on you.I hope the doctors can find the right meds for your precious baby.Never give up...keep fighting and think positive.I wish I could take your pain away and put your darling seizure free.Your baby is such a precious little doll! Be happy that you can hug her,give her kisses and tuck her into her little bed.Your time is coming with her giving you those baby smiles and the cute walks that all babies do.Have faith in your God.He does work mircales! God bless you and you adorable precious little doll baby....so cute! God bless

*Peace I leave with you; my peace I give to you.I do not give to you as the world gives.Do not let your hearts be troubled,and do not let them be afraid.* ~John 14:27

Re: weaning off phenobarbital need advice

Hi Sushina
I know everyone's seizures are different, but here's what I've found with my daughter:

She took Dilantin and Phenobarb from birth to about age 2.5. I had 2 problems with this, they counteracted each other, requiring that she take more of each one since each one 'ate up' the other. And she was sleepy or grouchy (from being sleepy) almost all the time. Also, Pheno is a barbituate and I wanted her off it asap! Finally, we took her off of Pheno and put her on Tegretol, bla bla bla. The point is she became more awake once we stopped the phenobarb, but we also ended up needing so much Tegretol that she again became sleepy. So we decreased the Tegretol and added Keppra (this is what she's still on - very little Tegretol and more Keppra). She became again much more awake and alert and is developing WAY quicker.

First, we have always been able to go days or months without a seizure (once we found the right drug) so I would not settle for less than nearly zero seizures (I know not everybody reaches this however).

Second, I understand your worry about balancing seizures vs. drug effects. I was quite discouraged in that I would always speak to my daughter and try to teach her things despite the fact that she hardly spoke and usually didn't really respond (a lot of staring). Regardless, I tried to teach her things like colors and names of things, etc as if she completely understood me, even though I wasn't sure that she did. She had been taking only Tegretol but required a lot of it to be therapeutic and started having seizures anyway. The day after (repeat THE DAY AFTER) we reduced her Tegretol and added Keppra, she was able to say (at least making a reasonable approximation) about 5 of her colors. And she was identifying them correctly! Basically, she proved that even though she was not responding, she was understanding me and retained the information I had been teaching her.

She is still on this combination and has gone from about 10 sounds (not words - sounds) shortly before this med change (1.5 years ago) to over 100 fairly understandable words at the present time.

I don't want to diss Tegretol because I take that (for about 20 years now) and I did very well in school and university but I think the point is you need to find the right thing for HER.

Another note about my daughter, her ped. neurologist says to expect her development to be at least as behind as the time that her seizures were uncontrolled - which for us is at least about a year - since the brain does not develop while having seizures or recovering from seizures. She has always been behind in nearly every area but has now caught up and in some cases surpassed her peers (she's nearly 5) in all areas except speech (which she may have had difficulty with anyway since speech difficulties are common in my family). In the long run, even if she never regains this year and is always 1 year behind her peers, will it really matter when she's 25 or 40? No.

Take care, I know the concerns you are going through. I'd love to keep in touch and see if there's any more info I can offer you.

Mom with epilepsy; 1st daughter - no seizures; 2nd daughter - seizures since day #1

Re: Re: weaning off phenobarbital need advice

thanks for the replay :)
i feel we can relate in alot ways with your second daughter, she had seizures since birth? do you know what type? and where in her brain was the seizures effecting? where sz's coming from a certain area of her brain or through our her hole brain? and do you have a diagnose, do they know why her seizures are caused?
it has been very hard these last couple of days her seizures have doubled! i have notice a little change in her awareness since this is her last week of pheno. but her seizure activity has worsen :/ i really don;t want her to go back to her regular dosage, her neuro appt is the 26th of this month! i hope they have another stragie?
i hope to keep in touch with you godbless-shina

Re: Re: Re: weaning off phenobarbital need advice

Yes, her seizures were since about 18 hours old. She has mostly had tonic-clonic seizures, but a few absence seizures during one period where we tried clobomax. This only lasted a few days though since it really didn't seem to be helping at all. Her seizures seem to come from above the left ear. She doesn't have any other diagnosis other than epilepsy (but no dr. has even used that word to describe her, in fact no dr. has ever used that word to describe me either, but I use it to describe both of us). We live in Canada, all I've ever heard is seizure disorder (same thing though). The only real explanation is that she has it because I have it but no one is sure why I have it. It doesn't really matter though, we just have to deal with it.

I'm glad your daughter is 'coming out of the fog' of pheno. But of course it's painful to see her seizures increase. I would really pressure her neurologist or whoever is currently monitoring her care to try a different drug - pheno is one of the oldest drugs and there are so many more choices now.

I've learned to be a big pain in the butt for drs. Before they do/change anything, find out why they are doing this, what they will do next if it doesn't work, and especially for tests - what info will they gain by doing this and what decision will they be making based on this info (no point doing a test just for 'fun' if it is not useful). If you don't agree or just don't understand, tell them that and have them explain until you are comfortable that they have considered all the options and are making the best choice. Tell them what your preference is if possible and really really be involved/educated so that they will truly consider your opinion when making decisions. Tell them your fears/apprehensions so they can help you feel as comfortable with the treatment plan as possible.

If I were you (and I really was in a similar situation a few years ago) my priority would be to get her onto something that controls her seizures, if at ALL possible, something that does not interfere with development as much as phenobarb. However, if she must stay on it a while longer, at least you know that my daughter was on it for 2 - 2.5 years (if I remember correctly) and from what we can tell so far, it hasn't caused permanent damage to her. So if you need to stay on it a bit longer, try to take comfort in that - it doesn't necessarily mean she will have problems when she is older.

Mom with epilepsy; 1st daughter - no seizures; 2nd daughter - seizures since day #1