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Old 03-23-2005, 06:56 PM   #1
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kayakmom HB User
Normal EEG and treatment

My son's first EEG was abnormal, he started treatment. He has had several normal EEGs since then. Treatment stopped for his first VEEG, which DID show abnormal slowing and some rare epileptiform bursts that concurred with the first EEG. Then it normalized. Sent home OFF meds to go back as soon as seizure picked up. Went in for a 2 day that was completely normal 6 months later. Fought our way in after 10 months for 10 days. THis one showed the same abnormal things for the first 5-6 days then normalized. Epi lied, reported to neuro he had clearly outgrown E. (he is still having seizures 2 years later).....Epi would not address that hospital record does not reflect outgrown, it shows the abnormal that they told us about daily, verbal report to Neuro which said it is parasomnia does not show at all in written report. SO we have 3 versions of truth from one Epi....

2 Ambulatory EEGs, first was normal... 2nd we just did and no results yet. 2 sleep studies, no seizures in htem but some other things ruled out (neuro said APnea because he heard him snore on on EEG....apnea ruled out).....

We head back to another Epi...this one did not rule out e but says a seizure MUST be caught on VEEG. ( Even though some people never succeed to have them on EEG......) He was supposed to do a VEEG this winter when seizures are highest....did not...made excuses etc. NOW our newest local neuro (Who has no facility to test except ordering sleep study or AEEG or send us to lying Epi......She called the new Epi and he says he wants to see Sam again.....


Anyone with normal EEG ever get treatment again?



Side note, Daughter has been treated by local for a year after some events and an abnormal EEG (and neuro said, based on brother's history.....)....She sees a new neuro April 1st since this local neurokeeps waffling on what she is treating....sometimes it is headaches, sometimes EEG, sometimes seizures.....



I feel like i am going crazy trying to get help for my kids....
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Old 03-24-2005, 02:14 PM   #2
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Re: Normal EEG and treatment

Sounds like the doctor is very confused and contradictory...I think it might be time for another opinion. Another Epi. Sam is also entering puberty, which might change some things.

I'm sorry things seem so murky right now. Try to take one thing at a time and start by requesting everything that has been documented...so you can go over it on your own time. That way you can make a list of questions or at least shine some light on what to go after next.

Do you feel the Epi's in your area are well trained? Do they have the fellowships in Epilepsy? Or Neurophysiology? I worry that some doctors may start to call themselves Epi's just because they feel they have been an "E" neuro for a long time. There aren't a huge amount of true Epi's around the country yet. (according to our Epi, who is well known around the country for pede work) They are working hard at getting more neuros over to the Epi specialty and recruiting neuro residents.

I wish I had more to offer...but I strongly believe in second and third opinions. You are your child's advocate.

All my best...

Vicki
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Old 03-24-2005, 02:36 PM   #3
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Re: Normal EEG and treatment

Thanks Vickie. We actually have to leave our state for any good Epi. The ONE epilepsy center in state is where Sam was misdiagnosed. Most neuros in state think that place is wonderful. I have spoken to a few patients who disagree and have had the same problems we had.

we saw another wonderful Epi for a consult, but she could not take him on as a patient. She said she could do some testing but will never treat, recommending that we go to this current epi.

Yes, I know his puberty has changed things for him. He stopped his sensory seizures when his changes started. He still has a few diurnal simple and complex partials a year. Mostly his seizures are in sleep. The fact that we no longer see many of them is counting against us. OUr current local neuro is also counting the number of doctors he has seen as a sign she should not treat. It is more that each one he sees defers to someone else and no one will take the lead....

I will keep fighting for him. This is a good week and hard to even believe he needs help. The memory of a really bad seizure last wed still rattles in my mind, however.

Thanks.....
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Old 03-24-2005, 03:25 PM   #4
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Re: Normal EEG and treatment

Hi again...I always wish there's more I could do...

I understand the frustration. Getting a doctor to take the lead can be trying. We were in limbo for years. Have you thought about going to one of the leading centers? Cleveland Clinic, Johns Hopkins, UCLA, Mayo?

I know our Epi is backed up about 6 months or more. We were fortunate to get in when we did. We were also able to name her as our Epi/neuro. We know many people who see her, where she is acting as a consultant to their neuro. She can't "take on" many more new patients for herself. Our Epi speaks very highly of Dr. Wylie at the Cleveland Clinic. She also mentioned an Epi at New York Presbyterian, which I'm drawing a blank on right now. Our Epi was at Mayo in Minnesota for awhile before coming to Children's Hospital of WI here in Milwaukee to start our Comprehensive E Clinic. I believe Rush Hospital in Chicago is up and coming as well. They hold a lot of seminars. I get info from them regularly.

I'm glad to hear this is a good week...God is shining down...

Vicki
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Old 03-25-2005, 05:42 AM   #5
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Re: Normal EEG and treatment

I am not sure what that means. So sorry you need to wait. You can try looking up at the Library in a Merck manual maybe? So hard to wait for answers...
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Old 03-27-2005, 12:15 AM   #6
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Re: Normal EEG and treatment

I just want to tell you I understand how you feel. Im epileptic myself. I have been all my life. I am 27 now and my first seizure was on my Mom's first Mother's day which was also her birthday. I understand where you are coming from. For my entire life I have had EEGs and MRIs over and over. All my life the EEGs have showed revealed a lot about my epilepsy however the MRIs never showed any sign of epilepsy. Epilepsy is an Illness that requires patience. Stick in there

Good Luck
Ethan

 
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