hi new & worried mum - Epilepsy Message Board

mel74123 · 11-14-2008, 10:21 AM

hello all i came across this forum searching for info on absent seizures.sorry if this is long ,i live in uk , my son is 5 and this started about 6 weeks ago with him just rolling his eyes both up into the right corner it was only occasional for the first week or so mostly when he was tired then this got progressivly worse and was happening all the time and more severly with an added head shake as if his eyes were stuck and had to shake them out of the corner,he doesnt even realise he is doing it.i took him to gp and he witness this he said that he could be having absent seizures and would refure to a neuroligist,told to keep a diary and if poss capture on my phones camera.This was two weeks ago and since then have been so many more odd things ,sometimes when rolling eyes his sholders shake,if talking he stops,pauses and then carries on,he has wet the bed a few times and complains of being thirsty, in the last few days had sudden stomach cramps.i am extremly worried as he was born with ebstines anomally (has leaking heart valves and enlarged heart) day to day this doesnt cause huge probs but is admitted if he gets any kind of infection due to him tuning blue.

i would be interested of anyones opinion of his symptoms and also if anyone is in the uk how long have they had to wait to see a neuroligist as am going out of my mind ?

many thanks

genesis6 · 11-14-2008, 05:21 PM

Hi mel 174123

I suffered from tonic clonic seizures myself for ten years,but before i was diagnosed with epilepsy i started to take absent attacks aswell.It does sound like epilepsy.my sister also used to take absent attacks she would roll her eyes up just for a couple of seconds and that was all.i use to shake and gurk and i also wet the bed, as my attacks only happened at night.The only time i ever had a sharp pain in my stomach was when i feel from a bunk bed after a seizure and got badly winded.I think you should just take him to A&E and get him checked,tel them your worried it could be something else.An MRI and an EEG should confirm if its epilepsy or not.good luck i hope everything works out for you and don't let them fob you off they told my parents it was only night terror attacks and left me for a year with no meds if it wasn't for my father demanding further tests i would be like a vegetable now

Konata · 12-03-2008, 09:25 AM

It looks to me like epilepsy. Absence seizures usually start with children. I am now 18 years old and I was diagnosed with epilepsy when I was a baby. I also have absence seizures. Usually children grow out of it by age 14 or so. I stopped having them when I was about 9 or 10, but when I was 16, I relapsed and I've been having them ever since. Sometimes these seizures can happen a few times a day or even hundreds of times a day like mine were. If that is the case, you may notice your child have trouble staying attentive (especially in school. I had developed a slight learning impairment because I had those hundreds of seizures a day and had lots of trouble even hearing what the teacher was saying), or when they start talking and they "lose their train of thought" often, it is usually an absence. but sometimes they'll have one and resume what they were doing and won't even know it. Your best bet is to take him to a neurologist and schedule an EEG, where they will simply glue some wired in certain spots to his head, wrap it up so they won't fall off. Then they'll flash a strobe light at different frequencies to see if it triggers anything. After, he will be asked to do some deep breathing so he hyperventilates, which is a common trigger. Then he will have 30 minutes of rest time and the test will be over. It's actually pretty nasty when they try and wash out most of the glue cause it looks like you haven't washed in weeks. XD

Currently I take Lamictal, which is effective for absences. There are some side effects, but in most cases, your child will not have any. Epileptics can lead perfectly normal lives. The only time it has hindered me is when it comes to driving. I'm 18 and haven't been allowed to drive in three years. Hopefully your son will outgrow it by his pre-teens. Hope I helped.

sommersmom · 12-05-2008, 12:49 PM

hi there. my daughter was just diagnosed with epilepsy in may. she too experiences many of the same symptoms that your son does. one thing that has really helped is the drug topamax and the ketogenic diet. good luck.