One DESPERATE mother in need of HELP!!!

[southerncotton25]

Hello I have a daughter who is 12 yrs old and we have been experiencing symptoms over the last month and a half. She has what I call seizure like episodes. Every episode starts off with a headache, flushing, nausea, dizziness, dilated pupils (non reactive) with a blank stare, convulsions and passing out. We have seen 2 neurologist and they seem to think it is pseudo seizures due to the EEG being normal and the fact that she does not loose bodily fuctions.. but I disagree. My daughter has no anxiety in her life and is not stressed out. We have seen a cardiologist and found out that she has mitral valve prolapse which is mild. During her episodes she has been either tachycardia, bradycardia or normal it varies. During one episode the EMT did a sternum rub on her and she did not react at all. All test have come back normal...EEG, EKG (after episode), MRI, CT, Tilt test and blood work. It has been very scary for both of us. We can't seem to get any answers from anyone except she is "faking them" which is not true if the Dr could see her have an episode then they would think differently. The EMT's and fire dept staff have seen her have an episode and they believe something is going on also. My daughter has been diagnosed with Migraine and placed on Topamax which they say can help with the seizure like activity. We have been to the ER multiple times due to these episodes and even spent 3 days in the hospital and was discharged with a diagnosis of convulsions, migraines and conversion disorder. Each episode has been a little different in nature but they all have the same starting symptom of a headache, dizziness, nausea, dilated pupils, flushing and blurred vision. We are suppose to go see another neurologist in a few weeks and having a 24 hr EEG done. Any help will be greatly appreciated.

[Nbarnett]

I'm not and expert but I have a thought of triggers, do you have a routine that's almost kept to the second? example (wake up, eat breakfast, brush your teeth, get dressed) basically the first two hours of the day are for her? If so change it get dressed first, then brush teeth...or in the afternoon change the routine constantly that way her mind isn't set as repeat but different enough to still be doing her needs for the day.

[Nbarnett]

I'm not and expert but I have a thought of triggers, do you have a routine that's almost kept to the second? example (wake up, eat breakfast, brush your teeth, get dressed) basically the first two hours of the day are for her? If so change it get dressed first, then brush teeth...or in the afternoon change the routine constantly that way her mind isn't set as repeat but different enough to still be doing her needs for the day.

[sherbear0930]

Hi there southerncotton25,
My daughter is going through pretty much the exact same thing. I noticed this was a January post. Have you had an answers yet?

[southerncotton25]

Thank you for the information flipper336. I will ask her neurologist about this EMU.

[flipper336]

I do not think they are pseudo seizures either. Ask your new neurologist if she can be admitted to an EMU ( Epilepsy Monitoring Unit ). The EEG would last for a week and everything that happens to her during an episode would be recorded on video.
I know it is frustrating but do not give up until you get the answers on what is happening to your daughter.