My 7 yr old daughter was just diagnosed on Tuesday with BRE, but I feel this diagnosis is 7 yrs late. When she was an infant I videotaped her having what I believed was a seizure (one of many of these "episodes" she had). We brought the video to a Pediatric Neurologist and also informed her that dad has epilepsy. The neurologist disregarded our concerns and said it was just spasms of an underdeveloped nervous system. A yr ago my daughter started complaining about horrible headaches almost on a daily basis. This same neurologist said she had migraines. Never ordered any tests. Well after 7 yrs of your daughter daydreams and doesn't pay attention we finally got a blessing when my daughter was held back in 1st grade. Her teacher immediately recognized that she was having absence seizures and we were able to finally get an EEG ordered. But now we need to wait until the middle of Jan to see this same neurologist to even begin treatment. It really bothers me when doctors don't listen to parents. We are the ones that know our children best! I am hoping that I can find support from others that are experiencing the same things. And if anyone has a child with BRE that also suffers from horrible headaches, have they found any medicines that have helped with both the seizures and the headaches. Thank you everyone and have a great day!
7 yr old just diagnosed on Tuesday with BRE
- Thread starter taradesi
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
RobinN
Super Mom
- Messages
- 7,834
- Reaction score
- 2
- Points
- 161
Welcome taradesi to CWE
My daughters symptoms are not similar, but I do know the concern and fear when dealing with a child who is not healthy. I also have dealt with doctors that didn't trust my instincts, and was always offered a "new" drug to try.
My daughter had 50+ tonic clonic seizures, which we have found were related to reactive hypoglycemia. She has been seizure free since focusing on this diagnosis.
I hope you get some answers soon. Jan will be here before you know it.
My daughters symptoms are not similar, but I do know the concern and fear when dealing with a child who is not healthy. I also have dealt with doctors that didn't trust my instincts, and was always offered a "new" drug to try.
My daughter had 50+ tonic clonic seizures, which we have found were related to reactive hypoglycemia. She has been seizure free since focusing on this diagnosis.
I hope you get some answers soon. Jan will be here before you know it.
- Messages
- 17,355
- Reaction score
- 755
- Points
- 263
Hi taradesi,
Just wanted to welcome you to CWE! I don't have kids, but I do share your frustration with doctors who don't listen. If your current pediatric neuro has a bad track record with your daughter's diagnosis and care, you might consider finding one you can feel more confident in.
Best,
Nakamova
Just wanted to welcome you to CWE! I don't have kids, but I do share your frustration with doctors who don't listen. If your current pediatric neuro has a bad track record with your daughter's diagnosis and care, you might consider finding one you can feel more confident in.
Best,
Nakamova
Thank you for the responses ladies. I have considered changing pediatric neurologist but wait time for appts here is the better part of 6 mths. I have asked my PCP to set her up with another neurologist and will cancel it if it is not needed. Or I may keep it and get for a second opinion. With the holiday I haven't heard anything on an appt being scheduled yet. When she was diagnosed with the migraines I went and cut all her hair off thinking that would help. She had gorgeous long curly hair that was below her waist. I guess I never needed to do that, but it is growing back and she did donate to "Locks of Love". It's funny how I feel like I have forgotten everything I have ever known about seizures. Thank you again for any and all help!