epilim, stopped seizures, but now having others, bub is 6 mths

Theresa - posted on 03/18/2009

hi my daughter got epilespy   we just been told she just rolls her eyes right up    but we taking her back to see doctor torrm to get medi   which they said would be epilim  they are  beening really good at school for her they called in school nurse to talk to all teachers about it so they know what to do in a full blow one    then nurse coming back once got medi     

Deborah - posted on 03/13/2009

ive got an app with my paediatrician to check his liver & sodium valporate, thankyou for the advice Jenny,

we have to wait a few weeks for the MRI, Harri is also having surgery in the next 8 weeks, he has a few "minor" "issues" that need to be fixed, a tongue tie, plus an extra finger on each hand...

the neuroligist also pointed out that he has a wide bridge of the nose, wide set eyes and a protruding forehead, along with the holes in his heart and extra digits, possible that its all linked, so thats all being investigated too.

although he is right on target with meeting all his milestones, he is even crawling now!!!



have a great day everyone, my thoughts are with you all xxx

Deborah - posted on 03/13/2009

hi Theresa, its really scary knowing what your child is going through, and nothing you can do about it.

ive got left temporal lobe epilepsy, Harri's seizures are "of an unknown origin"... but the epilim seems to be working, ive just started on the increased dose.

good luck, we're all here to help and support each other, dont be shy.

Theresa - posted on 03/12/2009

hi my daugther is 6 we just been told she got epilepsy   at the mont her eyes roll back they told us they will be putting on epilm from next week when we go back to doc    i do have epilepsy my self

Jenny - posted on 03/10/2009

Some other thoughts I've had about seizures & Epilepsy....some things that helped me in those early days.  Had the doctors monitor the Sodium Valporate levels in my son's blood - there is a "normal" range (if I remember correctly is 50 - 100) that should be in the blood at all times to stop the seizures (the levels can be tested via blood tests - in SA these tests were fairly cheap).   I let them do the tests just before a dose was due and thus we would able to see the lowest level.

The other test is to monitor their liver function (this can also be tested via blood tests) - the main side effect of Epilim is liver failure so with this test you can benchmark & monitor that liver function stays in normal limits.  Its most important to monitor this for the first 6 months they're on Epilim as if this effect is likely to occur then it will be in the first 6 months.

I also looked at / considered if there were any environmental may be trigger his seizures - with my son it was & still is if he gets very hot; runs a fever; gets sick (gastro or pneumonia); stressed.  So try manage the situations as far as possible....I know for others triggers may be flashing lights; watching television in the dark.

His doctor also prescribled Valium which we carry on us to use in an emergency if we're not close to a hospital and he has a bad seizure.....just helps me relax.

I must admit my son didn't go hypo but in the early days when they were increasing levels it made him sleepy.

Hope you're seeing some improvement.....

Alexis - posted on 03/09/2009

thats wonderful, i hope that the increased dose will help....

just watch him though because when the doctor increased jacobs epilim i noticed he

went hypo..... i talked to the doctor and we cant go above a certain dose with him... so we are also using lamactal......

hopefully your little man wont pick up the hypo side affect that my little man did....

Deborah - posted on 03/09/2009

ok, ive just gotten back from an app with a neurologist at mater childrens, they have increased his epilim to 2ml 3 times a day, strictly 8hrs apart as suggested, after a week we up his nightime dose to 3ml...

we have an MRI in about 3 mths,

the neurologist wants a ECG done and some other checks on his heart as he thinks that maybe the holes in his heart are part of the problem, as yet its just a guessing game as to what is causing them.

thankyou for your kind words and thoughts

Jenny - posted on 03/09/2009

Wow Deborah you are being a super brave Mom .I read your notes and look at the picture of you & your baby and he looks so perfect.  My son was diagnosed with fitting at just over a 1 year - iniitially with grand mal then later with petit mal.  It so scary to watch them having the fits and all you want to do is rescue them.  It seems that medicene is not exacting science and part of the process is the doctors finding the right medication and levels to treat the fits.  Found the seizure book really good in trying to understand the brain etc - Seizures and Epilepsy in Childhood A Guide published by John Hopkins University Press.  The other thing I found with Epilim is that it has a short half life so found my son responded better when smaller doses were given more frequently (3 times per day) and being very strict about giving it exactly 8 hrs apart.  Given with some other meds Epilim levels can drop or be elevated - check with doctor or pharmacist if there may be interaction between meds.

Wish you great strength & said a prayer for you & Harri

Deborah - posted on 03/06/2009

thankyou both,

first off, im in Toowoomba,... toowoomba, sydney, heck, we're next door neighbours in this world wide community!

We just spent the last 4 days in brisbanes mater childrens hospital...

Harri's seizures are undiagnosed, he has up to 6 a day, most was 14 in 12hrs...

harri was also born with polydactyly, otherwise known as extra digits, he has an extra pinki on both hands,

plus 2 holes in his heart, cyst on his brain, a tongue tie, and fistula on his neck & bottom... the list could go on for hrs!!! surgery for all of these will be in the next month or 2 apparently.

docs at the mater have just pointed out a few things in his features, that i thought were normal, such as wide set eyes, a protruding forehead and a wide bridge on his nose, and have organised a genetic specialist to check him out, they think everything is linked. they have lowered the epilim and are awaitinf further test results.

He has had another eeg, but we're waiting for an MRI and a lumbar puncture, which im dreading, they will happen over the next couple of weeks. im a little in shock, and a lot terrified.

talking to other mums here is a great relief, someone out there understands!



please keep in touch, will keep posting updates... and questions!!!

Rebecca - posted on 03/03/2009

hi my son ewan developed epilepsy at 12 months. it took 2 years to control his epilepsy with epilem. maybe the dose needs to be higher? i know how u feel tho, as every seizure is terrifying, yes the epliim has made ewan more hyper but for us, we rather that than the sizures. thoughts are with u xxx

Alexis - posted on 03/03/2009

hi deborah,

my son was 11 months old( he is now 3 1/2), when he was diagnosed with epilepsy, he was having grand mal siezures, all limbs jerking. frothing at the mouth and blue aswell, he was put on epilim and that also worked for nearly a year, but then he started having siezures again, not 5 mins ones like he originally was but 2 min ones, we kept increasing the epilim but the more we increased it the more out of control he got... he was on the go all the time. i spoke to my doctor and we lowered the dose and he was heaps better so we have introduced lamactal aswell..... in the last year he averaged siezures every 3 months and then out the blue a couple of weeks ago he had 2 drop siezures within 3 hours...the drop siezure is a new type of siezure, and that is scary in itself, one min he was playing the next he was on the floor.... with my son we found that he was picking up on the side affect of over activity on the epilim, so we cant increase the dose any higher than it is now, but we are increasing the lamactal.....

i did ask my doctor why a different type of siezure and he couldnt answer me, he honestly dosnt know why he is having different siezures, he has had all the tests and the results to everything has come back normal....

i would talk to your doctor..... i dont know if this has offered any help but i do know what you are going through if that makes it easier.....

im in sydney, where are you......

alexis