Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
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.
Comments
Thank you so much for your
Submitted by Laylasmum21 on Mon, 2017-05-29 - 21:04
Thank you so much for your reply Amy Jo I think our doctor is a neurological pediatrician, sorry i left that out. What you said about the cyclic nature of her seizures seemingly linked to the onset of puberty is EXACTLY what we thought initially as well but our doctor dismissed me when i mentioned hormone testing. Frankly he makes me feel like an idiot for even asking to test further than he already has. You have reassured me enough to give the confidence to at least keep asking, i appreciate it.Maybe we need a more approachable doctor.Where to start? Its overwhelming :(
ideally you would get a
Submitted by Amy Jo on Tue, 2017-05-30 - 02:51
ideally you would get a second opinion with an epileptologist - in fact it is common if seizures are not controlled by the first year.but...a lot depends on where you live and what resources you bring in. if you live in major metropolitan area, an area with a major pediatric research hospital or access to amazing insurance then you may have an easier time jettisoning a doctor who is a bad fit for your family.so do research the options but don't burn any bridges yet. you can check out which highly rated pediatric hospitals in neurology & neurosurgery are nearest (us news and world report ranks those), you can call your local epilepsy foundation affiliate and national lines, check out what your insurance covers (and where), etc.. you can also bring both parents to appts (I consider it a red flag if a doc blows mom off but listens to a dad or other serious authority figure you might bring but sometimes that's the only option, it definitely adds weight if both adults provide a united front, asking questions is different when two people are staring at a doc, keep your demeanor friendly but expect answers and referrals if you ask - asking for a different look can be done without insulting a doc who might take insult easily so it pays to practice some approaches).
it sounds like you are only
Submitted by Amy Jo on Mon, 2017-05-29 - 20:51
it sounds like you are only working with a pediatrician?!? ideally you have a great neurologist or better still is an epileptologist. we regularly call/email our doc's office about activity and medication adjustments. I know our epileptologist would schedule an eeg (inpatient or ambulatory) to be during the expected time if it were that predictable. rolandic epilepsy is part of a spectrum of genetic epilepsies (and they supposedly can shift from one to another) and many of those do have nocturnal only seizures so it may be in the right ballpark but the periodic nature also sounds potentially hormonal. I don't recall the nocturnal epilepsies I've read about mentioning such a cyclical aspect but it's been a while. (our daughter has a genetic epilepsy that appears to be related to that spectrum but when they last took her off meds her seizure activity was ongoing and not limited to sleep).