angry mum!!

[bev]

Hi, have stumbled across your site, by accident. I have a beautiful 14 (nearly) yr old daughter, who has epilepsy. She was diagnosed soon after birth, although me and her dad suspected somthing was wrong bufore she was born. J has difficult to controle seizures, but recently has started to have focal seizure. these occure as she is going to sleep, and involve the left side of her face dropping then twitching, and her arm and legs stiffening and shaking violently. Thes seizure have been happening for 2 weeks now. She was admitted to hospial on Tuesday (15/12/09) but was discharged the next day, with the words, we cant do anything. She saw her consultant on Wednesday who has given us more drugs but no answers. I am so angry, my girl has other problems as well but her epilepsy has always been the one thing I would change about her if I could.
Thanks for letting me whine and if anyone has any ideas I would love to hear them.
Take care and happy christmas.
Love bev xx

 

[Nakamova]

Hi Bev, welcome to CWE.

This is a great resource for info and support, especially for caregivers -- parents, partners -- who are trying to help loved one with epilepsy. I hope you feel free to ask a lot of questions, or vent as needed. And I hope you find answers soon for you and your daughter that will help keep the seizures at bay.

Since your daughter is 14, perhaps this latest round of seizures is related to hormonal changes (estrogen levels can trigger seizures). If you keep a seizure diary, it can be a good way to isolate any potential triggers, including hormones and also diet/metabolism, etc. You may also want to explore whether diet and/or neurofeedback may help -- you can search on those topics using the tab at the top.

Hugs to you and wishes for happy, healthy holidays,
Best,
Nakamova

Ih

 

[vapour]

Hi, and welcome to the forum.

I myself have also ended up at the ER with seizures. Basically ... they really dont do alot. For me personally I have come to the conclusion I will handle clusters of seizures that wont stop.. from now on .. myself... (i have klonopin for emergencies)

ER will give you the pill and send you a bill. You go in .. they give IV ativan to stop it.. then out the door you go. They could have at least refered you to their neurology clinic...so that follow up tests could have been done. Sometimes you have to be agressive to get this.

If it happens again, be agressive with them. Tell them you are not leaving unless some follow up tests are done to figure out why these new symptoms have arisen.

DO you have a Neurologist you can go to currently ?

I hope you find something that will help your daughter. Epilepsy is a complete pain in the butt....I am glad you joined the forum, I am sure you will find people going through similar things.. sometimes it helps to know your not alone..

pleaes keep me update/us upated.