Just wonderig if anyone has a toddler on epilim.
DD may need to be on it, we are just waiting for results of her EEG after seizures last month, we have been told she probably has epilepsy but will grow out of it.
My main concern is if it changes their personality in any way.ANd how long did your kids have to on it for?

Hi, Both my girls are or have been on epilim, since 10 mths of age. paige started at ten months, and started weaning off after approx 14mths, once she was seizure free for 12 mmths, (usually 2-3 years but we thought we would see what happened) and has been fine, has now been seizure free for almost 2 and 1/2 yrs, seems to have grown out of it, even though she was having 3 or more seizures a day before going on the meds. Jamison had only 2 clusters of seizures exactly a month apart, adding up to about 6 or 7 all up, and has been on epilim for just over a yr, and we will starting weaning her off it in another week when we see her neurologist.

Both girls seem to have grown out of it, which is very encouraging.

Paige had a small amount of hair loss when first starting the epilim, but not really enough for any1 else to notyice, it's just me that did! Jamison has a very large appetite, which is apparently due to the med, tho she certainly isn't overweight at all, so it could just be her! something to watch out for, is that it can affect the liver, so ask for regular liver function tests, which are just blood tests, Paige was having them monthly for a while, not so often with jami. I know a possible side effect is personality changes, generally it would dull the personality a bit, tho we havent found this. If anything, at times Jamison would get a bit hyper after having it, but she is a bit of a wild child anyway so once again it could just be her!

I'm pretty sure from memroy that it's one of the milder anti-convulsents on offer, and we certainly haven't had any probs with it. Don't worry about the bright red colour of it, as it doesn't stain, and there are 2 options of it - sugar-free or with sugar. We've always used sugar-free.

We opted for rather than continually upping the dose as the girls grew, we kept it at the lowest dose which kept them seizure free, so basically they were weaning themselves off it as they grew. just didn't seem much point in giving them more and more when they obviously weren't needing it.

As it comes in a large bottle which is not convenient to take with you when you go out for tea etc, ( it needs to be givin after eating) I asked for a small empty bottle from the chemist and poured some in that, and just leave it in our snack bag for whenever we got out.

Sorry it's such a long post, I'm just glad to be able to help someone else with such an awful time. What state do you live in? I'm in Victoria and have had a great deal of experience with the Royal Children's Hosp. Please ask me anything you want I would be thrilled to help you in any way! What sort of seizures did your girl have? I never knew there could be so many different types!

Feel free to private msg me, I've not done that before so I'm not sure how it works!
[Edited on 19/10/2008]

HI breens,
thanks for all that information. I am really pleased to say that DD does not need the epilim after all. She had 3 seiaures on one day, all generalised ones and very scary to watch. After her EEG it took ages for the results to come and the paed thought we would need the epilim for a couple of years but the EEG was completely normal.
Having been thrugh a very small experience compared to you, I can feel for the scary times you must have had and hope your girls do really well without the epilim.

Thats fantastic news, I'm very glad to hear it! My heart always drops when I hear another family going through something like this. Do keep an eye out for more though, as both our girls had completelt fibne eegs as well! Good luck and fingers crossed that everything stays well for you! Thanks for your wishes, looks like Jami will be on the epilim a bit longer as her nuerologist's apt has just been put back a bit longer. Oh well, soon enough!