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has anyone noticed developmental delays with there child on phenobarbital???
Wed, 09/05/2007 - 21:58Topic: Parents & Caregivers
My daughter will be 2 at the end of the month and she has been on phenobarb since she was nine days old. She started a drug called topamax about 2 months ago and she started doing so good that the docs started to decrease her phenobarb. The first full day of the decrease you could see a difference. She was smiling and laughing. She started to try to roll over on her own. Two weeks later they decrease the phenobarb again and told us that phenobarb is proven to cause delays in children. She now grabs for toys which she never did before. I was just wondering if anyone else had the same problem. And i wanted to give a heads up to the parents that have there children on the drug.
katie
Comments
Re: Re: Re: has anyone noticed developmental delays with there c
Submitted by janellesmom on Wed, 2007-11-07 - 22:51
my daughter is 6 months and we began weaing her off phenobarbital almost 2 months ago at first she respond well by not having more seizures then when she was at a full dose, she caught the flu and her seizures just sky rocket shortly after got her immunizations we held the tampering until she was more stable- weeks went by increased her other meds (toppamax+keppra) today was day 1 without giving her phenobarbital. i have notice her making better eye contact and slowly tracking- but she is still very sleepy still no smile very low toned
how long did it take before you notice a big difference?
i'm starting to believe it doesn't make a difference weather or not janelle is medicated or not?
Re: Re: Re: Re: has anyone noticed developmental delays with the
Submitted by Morganjamie on Thu, 2007-11-08 - 21:40
We started feeling her tone change about 2 weeks or so after the weaning. It takes quite a while for pheno to get out of the system. Also our neuro said that she may seem sleepier when taking her off the pheno because her other meds will start working better. pheno almost fights with the other drugs so that the others don't work as well. I feel the same about how Morgan would be without drugs, but I would never dare to try none at all. You have a beautiful little girl there! I hope that taking Janelle off the phenobarb works for her. I have not heard anything good about phenobarb. Please keep in touch. morganlayla05@yahoo.com I would really like to know how she is doing! Katie (Morgan's mom) myspace.com/morganlayla05
Re: Re: has anyone noticed developmental delays with there child
Submitted by Morganjamie on Wed, 2007-11-07 - 21:35
Hi there. I was very nervous too about taking morgan off of the phenobarb. We had tried it a couple of times when she was younger and it didn't work. She would go right back into having as many seizures as she did when she was first diagnosed. Morgan has been on the drug since day 9 of life. We began weening her around 21 months or so. She went down from one pill in am and 2 in pm to one in am and 1 and half in the pm and instantly we started to notice a difference! She started to have a personality, I don't know if your son shows disinterest in things or maybe I should say an interest, but it seems like he can't react the way he wants too. Morgan was like this and It was instant that when you would say her name or come into the room she would smile and she had never done that before. Before it almost seemed like she couldn't see and now she can see everything and you can tell! She now reaches for toys. She's is fiesty and before she just acted like nothing phased her at all. To me it is a miracle to see her like this. I have never known the true her until the phenobarb was decreased! She is not totally off the pheno, but she is now down to a quarter of a pill 2 times a day. She does have some seizures once in a while. The seizures now don't set her back like the used to either. Before if she would have a seizure it was like she would forget anything that she had learned. She would loose all muscle tone for weeks and be very weak but she now retains all the things she has learned. She is still delayed, but I truly believe that she would be very much further behind if she was still on the same dose of phenobarb. I waited so long to switch meds because I was so afraid of the side affects. Her neuro put her on topamax while still on the pheno and got her seizures under control and she went for about a month with out any seizures. During that time I had talked to a woman who told me what her neuro says about phenobarb. (she lives in canada) And everything she said that the neuro had said was happening to morgan. Lack of concentration, delays, being lethargic, poor muscle tone and so on. My hubby and I just thought that we had to take a chance. Talking to that woman really made a difference in my daughter's life. It's been about 3 months now and Morgan is now starting to hold her head up and support herself when sitting in your lap. She grabbed a toy off of her highchair and it was the most amazing thing i have ever seen! She has rolled over, She says "more", She makes eye contact which is the best! Every week when she has therapy the therapists are amazed..She's in developmental, physical and speech (which i highly recommend...ask your pediatrician if you have an early intervention program in your area.) Please keep in touch and you can ask me anything and i will try to help as much as possible. How is your son doing?? Katie (Morgan's mom)