Complex Partial Seizures 11 year old daughter

[Alexi'sMom]

My daughter has just been recently shown to be having complex partial seizures. These also include migraines We believe they started about a year ago during sports (altho at the time we had no idea that's what it was) when she would pass out, then be very tired afterwards with headaches. 2 weeks ago today we were preparing dinner together when she had one that was completely different from the other episodes. Had I not been there, she ould really been injured from falling. Also, never would the passing out episodes caused us to see a neurologist. She's been having migraines since she was about 8 or so. Had an EEG done then and it was normal. She was diagnosed with pediatric migraines (or juvinile migraines). Starting last summer they became worse and also happened after the passing out episodes. This last seizure (of which I didn't even know was a seizure at the time) caused a migraine for 3 days. She was very sleepy afterwards and really didn't do much for those 3 days afterwards. Took naps each day. She NEVER takes a nap. I've been really trying to educate myself in how I can help her. It seems sleep, or lack there of, can play a big part. Makes sense, it's summer and she's a night owl. She started taking Topiramate 15mg last night. That medication has some scary side affects. Her MRI is scheduled for Wednesday. I'm verey saddened at this diagnosis, but I'm trying to stay strong and help her educate herself as well. Any advice is welcomed right now.

Thanks for reading,
Stacy

 

[Courtneysmum]

Hi Stacy.
Your daughters episodes seem alot like my daughters. I know its a shock. But for me the possible epilepsy is alot better than the first thoughts which were brain tumor
We have just returned from a week in hospital...
Looking back It all started on the 13th of Ausgust when my daughter was seemingly ignoring me! I got quite cross at her actually. And then this terrible mood swing.
After that her vision went blurry/double. We took her to the dr who reffered her to an optomatrist. The next night she was running around at a party and stopped suddenly saying her eyes were very blurry and she cried alot.
we took her to hospital where they did CT's, EEG'S, VEP's, MRI & opthamology exam.
Her EEG Showed Benign focal epilepsy.
Over the time in hospital I began to notice a pattern. She would get quite hyper, her heart would race, she'd have a pain in the backs of her legs, headache, numb spots & then her vision would get very blurry for about half an hour and she will cry and get very emotional. after that she would be SO tired and fall asleep. (Has NEVER slept during the day!) has miagraine for quite some time.. And then the episode would repeat a few hours later. I've since realised there is also a very subtle blank stare period.
I've noticed her running around is a trigger & certainly she is quite affected after with headaches & miagraine.
They have her on medication, even thought they arent 100% sure its epilepsy!?? (One neuro even told us she is making it up!! :/ ) its all very frustrating
She has been on her medication a few days now & it seems to be helping

 

[Eli]

When I was 7 the drs called it night terrors. I would sleep walk, I had problems sleeping and I called the nocturnal episodes "nightmares."

My mom said I would stare and not respond when spoken to. It was partly because of me not responding that led them to take me to the drs to have my hearing tested. That dr then referred them to John Hopkins.

Given you and courtneysmum will prob be chatting a bit and comparing notes I won't repeat myself, but I responded to her post.

I did well in school but I learned to make adjustments to achieve that. Ie - lights hurts my eyes, my vision would blur and I couldn't hear well so I always grabbed a seat in the front of the classroom, but on the outside of the room. If I had a spell I ran for the bathroom. I remember adults joking about my inability to hold it. You learn to adjust.

 

[Courtneysmum]

Interesting u mention the light sensitivity Eli, Courtney screams if there's bright light when her eyes blur

 

[Eli]

I am highly photosensitive. I wear sunglasses out during the day and the eye dr tinted my reading glasses. I adjusted the brightness on my computer monitors but have to take frequent breaks and watching tv can be troublesome.

 

[Eli]

It's hard enough getting an epilepsy diagnosis and having drs listen to you as an adult. Being a child and not knowing what's wrong or how to verbalize it is worse, imho. Your child is blessed to have you doing the research, I applaud you and all parents not blowing it off.

 

[donnajane]

HI, Hope the MRI goes well. My little boy is 19months and along with his other issues they thing he also might suffer migraine as well. His Nureologist said unfortunately we will have to wait until his is older to know more when he can speak and tell us.
I know on my first trip to the ED at 3am one morning, he was just over 7months old, after a run of serizures I was so scared but more scared of the unknown. I had no idea what was happening and had such a different idea of what Epilepsy is to what I do now. The more i learn the more I feel more comfortable with his condition, comfortable may not be the correct word but I think you know what I mean. To help me understand more about seizures etc I joined this site but also spoke to a couple of students I teach who have seizures and they have been brillant sharing their experiences as my little boy is to little to share yet. We still don't have all the answers as to what is happening with him but we are getting closer all the time. Good Luck with it all.
Take Care
Donna

 

[Courtneysmum]

The more I learn Donnajane the more scared I become for my girls future