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weaning off phenobarbital need advice

Sat, 10/13/2007 - 00:08
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-

Comments

Re: weaning off phenobarbital need advice

Submitted by Baby Sam on Sun, 2007-10-14 - 14:11
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

Submitted by Maggie on Sun, 2007-10-14 - 20:04
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

Submitted by Maggie on Sun, 2007-10-14 - 20:15
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

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