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Understanding our diagnosis
Mon, 05/29/2017 - 20:09Topic: New to Epilepsy.com
My 11 year old daughter had her first (as far as we know anyway) tonic clonic seizure last June.
She had no history of seizures except one febral convulsion at 9 months of age so the big seizure seemingly came out of nowhere.
This seizure was preceded by some kind of fainting spell/small tic like fit at school after a night with minimal sleep.
Since that event ALL of her activity has remained nocturnal.
A pattern has developed that leaves me with so many questions as it doesnt appear to fit into the rolandic diagnosis she has been given.
Every 21-28 days it begins (yes we are lucky to get a 3 week break between, i know how much worse it can get) with a bed wet.
The following day Layla will experience stomach cramping and some times lose bowel movements.
These will continue for three days before accumulting to a sudden spike in her temperature while she sleeps (and ALWAYS at around 6am in the morning)and ending in at least one tonic clonic (lately its been 2) lasting for as little as two minutes and as long as 8 minutes, during which she usually goes blue.
She was tested for infections after the first one and they returned all clear.
She has had one eeg and it came back completely normal aside from some slightly unusual rhythms that are not consistent with epileptic activity.
Im not comfortable with this diagnosis, Laylas clearly developing a tolerance for her tegratol (which is being addressed by her pediatrician currently, im assuming her dose will be increased soon)
Has anyone here experienced this type of nocturnal/gastronomic type of seizure activity with rolandic?
Is it normal and im worrying for nothing?
Why do doctors give medications first and ask questions later?
Is she growing sicker while we sit on our backsides doing nothing?
We are so scared.
It see,s to be that you are
Submitted by mereloaded on Tue, 2017-06-06 - 12:48
It see,s to be that you are in heavy denial.She has a history of seizures, so they didn't come out of "nowhere" She has seizures monthly, so it is not a case of "random once in a blue moon" type. People need several EEGs sometimes. My son has had five of them, all normal, and he is epileptic.Your daughter's EEG did have abnormal findings. Spikes were found, even the most minimal ones. My son's eeg had a "half a second" single spike. And while it wasn't enough to diagnosed a certain type of epilepsy (which we still don't know which type he has because if this), it was enough to demonstrate that there was in fact something that was noted. In my case, even though there is not enough sufficient EEG data, his symptoms were enough to diagnose him. So he has epilepsy of "unknown kind" and we have been in this for over 4 years now. So you have things to worry about. No one can truly say that their children have seizures and lose bowel control and they have "nothing". I know epileosyepilepsy is scary and frustrating because often times doctors can't give you concrete answers , but it doesn't mean it doesn't exist or is not happenning.My advice to you is to request a copy of the EEG findings. And once you read and research,you can see that there are in fact findings, but doctors don't get in to it and give you just a wuick version of things not to make freaked out parents hysterical. No doctors prescribe powerful anticonsakts to children if they don't need it. Your child clearly needs anticonvulsants. Epilepsy can kill people or cause irreversible cognitive or brain damage..that is why your child was giving life saving and health saving prescriptions. Treatment adjustment is quite common at the beginning and in children. Kids grow and epilepsy itself changes. Each patient is different, so no one can tell you from their own experience, and only her Neurolgist can tell you, so ask him/her .