Seeking Info on Seizure Medication

Hi S.,
My daughter started having seizures at the age of about 10 months. They were infrequent at first and a neurologist thought they were actually breath-holding "spells". After a couple of months the seizures were happening every few mintues and I was able to videotape a few of them. After seeing the video he asked immediately asked me how much she weighed...he was going to start her on meds. She took "Trileptal" for about 6 months then the MD suggested I try weaning her off. My daughter is now 28 months-old and has been off the medication since April 2007 and has remained seizure free. E-mail me if you want more details or just to "talk". I know how scary it can be to watch your little one going through this. P.

My husband has epilepsy, he was diaganosed when he was in high school though. I understand how hard it is to feel like there isnt anything you can do. He takes two different kinds of medications, Kepra and Depakote, which keeps his seizures under control. Have you tried looking at http://www.epilepsyfoundation.org/ ? Also, make sure that your doctor specializes in epilepsy. If it were my son, I would put him on the medication, but on the lowest dose possible.

Hi S.,

I know exactly how you and your husband are feeling. My beautiful so Spencer had his first seizure at 9 months old. My first thought was oh my I did this to him because I too have epilepsy and I am on medication for seizures. I didn't want him to have to be on medication at such a young age but my husband and I sat down with his doctors and we talked at length on what we should do and we came to the decision that he should be on the meds. He is on Phenobarbital. He started on a liquid version and we just switched him to a pill. We just crush it up and he doesn't even know he is taking it. He is now 15 months and other than his meds needing to be adjusted. We have a small inkling of what has caused the seizures but we aren't 100 % sure why they are happening. One suggestion I do have from experience try not mix meds. I did and I ended up having more seizures. I wish you the best of luck. If you have any more questions for me just send me a note!!

S. M

i sent your post to a friend of mine. i copied/pasted her response to your post below. she's not a mamasource member. hope it helps.

Hi S.,

My name is Cynthia and I have a friend that is a member of mamasource and asked if I could be of assistance to you.

My soon to be 2 year old son was diagnosed with Infantile Spasms at 1 1/2 months. He was having mild seizures that seem to come from nowhere. We had an MRI and EEG and they found an "infarct" (still have no idea what that means) in his left occipital lobe which was causing him to have these seizures. He was placed on a liquid anti-seizure medicine phenobarbital until he was 6 months. During those 5 months he progressed developmentally and showed no signs of seizures until he was 6 months. He was then placed on a capsule called Topamax which he is still on to this day. Because he progressed and regressed so many times and the seizures never went away I was advised by his neurologist to seek and find Vigabatrin aka Sabril (which is in the works of being approved by the FDA. Comes in pill form or powder) which I found at a pharmacy in Canada (can also be purchased in Tijuana).

When my son was 18 months and could no longer be classified under the "infantile spasm" category, another EEG was done and is now classified as having Lennox Gastaut Syndrome which is just another form of seizure activity in the brain. He continues to take Topamax and Vigabatrin daily and has a mild seizure maybe once every 3 months. But because of his brain injury (that was never found during any of my ultrasounds) he will have some type of seizure disorder for the rest of his life. He is delayed developmentally and is currently in physical and occupational therapy.

I would suggest you ask your sons neurologist about Vigabatrin (which is an out-of-pocket expense ranging from $100-200) and Topamax. I am also a part of a yahoo group called infantilespasms where parents from all over discuss a wide range of issues our kids go through so feel free to stop there if you need further assistance regarding your son...if that's his diagnosis.

I hope I was able to help

Cynthia, mom to Cameron

Hello S.,

I was 33 years old when I began having seizures. However, in my case I had a small tumor in my brain...anyway, the doctor put me on meds in order to control them. I'm now 37 years old and by the grace of God I'm no longer on meds and my seizures are gone. I'm living a healthy and productive life.....I said all that because I think your child should take some sort of meds in order to control it, ask the doctor if your baby can start on a lower or milder medication. I hope this was helpful, I'll be praying for you and your family S..

My 7 year old daughter recently started having seizures during sleep. I found the message boards on www.epilepsy.com useful in gathering information. Have you had an EEG or MRI done? My daughter's seizures have not been very frequent thankfully (4 in 4 months) but we have been stressed out about the medication question as well. We have opted not to put our daughter on medication at this time, despite two neurologists' recommendations to begin medication. Right now we are working with an osteopath who does cranial-sacral manipulation. A friend of ours had complete success with this treatment for her young son with epilepsy. Keep reaching out for more information -- I was surprised by how many people I know had some personal or familial experience with seizures after I mentioned our situation to them. Good luck!

Hi S.,
I first just want to say congratulations on the baby on the way, and happy birthday to your 2 year old. It sounds like you are doing the right thing already. You've gotta start out by finding where in the brain the seizures are happening and what kind of seizures he is having, this may help get them under better control. Have you noticed anything trigger the seizures, and are his reactions the same every time? Give this information to your doctor, discuss everything, and know what to do in case of emergency. I worked in a specialized daycare for kids. We had epileptic kids, downs syndrome kids, cerebral palsy kids, and other diagnoses. There were many kids on one or two seizure medications, primarily phenobarbital. Medicine has come a long way and as long as he remains under doctor care, and blood levels monitored the better off he will be. It is important to watch his seizure activity and time how long each one lasts. Be sure to report that to his doctor. Also ask if there are pressure points (depending on the type of seizure) that you can touch to help get him out of the seizure. We had a little girl who had seizures every couple minutes, and we use to have to push gentle on her forehead and the seizure would stop. Ask your doctor all the questions you can, and he would only recommend the meds if he knew they would help now and in the long run. Best of luck, and hang in there.

Hello S.,
I am turning 39 this year and was diagnosed with petit mal seizures AKA the silent ones at the age of 9. No one knows to this day how I got them. I have taken all sorts of meds from phenobarbital, dilantin, depakote. Depakote was prescribed when I was in high school and I took this until I learned that I was pregnant with my daughter who is going to be 15 in June. My Neurologist decided to take me off of the depakote because of the birth defects such as spinal bifida. I think I misspelled that. I have been on phenobarbital since 1992. I have had 2 healthy full term babies on the medication. It just makes me sleepy. I had an EEG in 2005, and there is still some seizure activity. I notice it most when I am not well rested and when I am on my period. It's strange. I don't know much about infant seizures though. Hang in there, I know you have a tough road ahead of you. Just keep reaching out and do lots of research like you are doing now.