has anyone noticed developmental delays with there child on phenobarbital???

Hi There, Just thought you would like to hear from someone who has been on both the meds you seem to mention (phenobarbitol and topomax) as well as many more and survived life with not many developmental delays really. I sucked in math all through school, but I'm told that's inherited from my dad. Beyond that, I'm 33 I have a university degree in sociology & criminology - graduating with that in 1997 moving on to work as an Information Technology Support Consultant until recent company changes happened, so now I work as a Sales Lead Gen Rep / Admin Assistant in a different place - less money, less stress (stress is my main trigger for seizures, so I've decided to go low key...). Any ways, I was diagnosed with seizures at age 5 & ended up taking phenobarbitol & zarontin together from age 5-12. At age 12 they took me off meds thinking I'd outgrown things. Age 16...well, back on meds...at that point Tegretol CR (control release) and only that. From age 16 to now it's been all kinds of combinations - but in the mix has been Tegretol, Valproic Acid, Clobazam, Lamictal.... And as for right now... Topomax 100mg 2 x day, Keppra 500mg 2 x day, Clobazam 10mg at night. Thing is, I only really ever have absence seizures one every 3-6 months. That level of medications impacts me still at times. Mainly, they make me tired (clobazam), and impact mood swings (that's keppra) So, I always think when parents say a medication is impacting a 1 or 2 year old. Well, um...ya!! When doctors give a little kid almost the same dose of a drug that I take at age 33, and well for the first 6 months on it I experienced side effects that were horrible, and I was at least able to explain to people when my boyfriend and I left places early that every time I ate anything I felt like I wanted to throw up...and well, as I adjusted to Keppra (the most recent addition) I went through wicked mood swings where one minute I was happy, the next I wanted to kill someone if not me. Again, I'm used to med transitions, able to understand it & explain it. Hopefully your kids outgrow seizures & don't have to get used to this, but at a young age they have no real way to say - umm...this med kinda sucks & this is what it's doing to me. They have to go with it. And, yup I always think of course it's going to impact a little kid. They're too young to speak up & say what's going on, so it will impact them in other ways. That's just my take,but thought you might wanna know from someone older that's taken those meds most of my life. Also, don't discredit the impact that going through a seizure is having on your kids. That is physically, mentally and emotionally draining. No one ever thinks so, but they take a few days to bounce back from. Most people I know (boyfriend & family excluded) expect that I'll be back to myself the next day. Thing is usually my jaw is killing me for a week, the inside of my mouth hurts, I'm kinda stiff & I'm typically kinda annoyed with life and the world. Then there's the stiff shoulders and stuff. It takes time to bounce back. That's just me though. Most doctors always go too high of dose too quick these days. So, just a guess but that & seizure frequency together could be part of your issues. To give you an idea...I'm 33 & this is what I now take: - Topomax - 100mg 2 x day - Keppra - 500mg 2 x day - Clobazam - 10mg at night It always amazes me the number of times I read posts by parents where they have a little one taking the same dose of Topomax or Keppra that I'm on and then can't figure out why the side effects are intense. Well, there are times I still feel the side effects of Topomax & I've been on it since I was 28, then Keppra was added in June 2006, I'm still sorta adjusting to that even though it's at full dose. Clobazam is still one where as soon as I take it drowsiness kicks in! Hope this sorta helps. Good luck & don't let seizures stand in your kids way. ~ Godiva

I have a daughter that is going to be one on sunday and she is currently on phenobarb and topamax and she has been on them since she was two days old when they first put her on phenobarb it didnt control them then we went with topamax too. one good thing is is that she hasnt had a seizure since november but i see alot of bad like with the topamax she doesnt sweat and with this summer heat its not cutting it and with the phenobarb she is still at a 6 month level she wont grab things she wont bear weight on her legs and she doesnt want to eat food it delays her alot we go for another eeg and i want to talk to them about taking her off phenobarb or switching to other meds but if anybody has  some advice for me i would appreciate it.  

My daughter could never take phenobarb due to being allergic but she did take Topamax from about 9months up until she was 3. she started out on a dose of just 1-25mg tab 2times a day & by the time she was taken off she was at a dose of 2-25mg in the morning and 3-25mg at night. not only did it slow down her growth but as the doses grew larger we slowly watch her memory start slipping and her ability to remember how to speak clearly go away. As we would visit her doctor for check up we would express our concerns of her not growing and regressing but were always told that it might be because she was the younger child or that some kids just did not speak until they were older. It was not until she was a little older than 2 that both her peds. dr. & neuro. dr. started to realize the things we had been expressing to them all along. The problem was before we could do anything about it she had very bad seizure that lasted 45min and landed us in the peds. ICU at the local children's hospital were she was immediately taken off and switched to depakote. My mother also takes topamax for her migraines & we notice that sometimes she experiences the same problem as far as the ability to pull the right words she is looking for to describe an object or just have a normal conversation. she is a perfectly normal healthy 45yr old woman that has never had any other problems. I should also let you know that shortly after my daughter was taken off the topamax her speech started to come back and she grew a whole inch and went from hovering around 18-22lbs to 28-33lbs all though she is still smaller than most kids her age it was a huge improvement. I hope this gives you some useful information since when her neuro.saw her 6mths after she was taken off the drug he was shocked to see her improvement.