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need advice...have 6 year old twins w/epilepsy

Mon, 07/23/2007 - 10:18
Hello, I have 6 year old twins w/generalized epilepsy. Thankfully, one of them has been controlled for the most part (he did just have a drop seizure about an hour ago) but I can count on one hand how many seizures he's had in the past year,so I look at this as an improvement. However, my other son started these wierd jerks back in Feburary. We took him to the neurologist and he suggested myoclonic seizures. He didn't seem too concerned, but my husband and I really felt that he was blowing us off. He did have us do an EEG, but I swear, my son did fine and then as soon as we leave, the jerking starts again. The EEG is abnormal, but b/c my son loves to entertain the neurologist, we felt like he wasn't taking the new situation seriously. So, we started looking for another dr. We found an epileptologist about an hour away. She immediately started a series of EEG's. He has continued to have the jerking off and on since then. He'll be ok for a few weeks and then it starts again. We've done 2 EEG's with her. One in the office and the ambulatory EEG. Neither showed anything relating to the myoclonic, so she's yet to diagnose whats going on. She's suggesting a video EEG but my son hasn't jerked in over a week. I don't know if it will be worth admitting him into the hospital for 5 days and then find nothing new. Not to mention that they want us to pay the copay upfront, which is like $450. Of course, they told me this like 2 days before he was to go in. There was a huge miscommunication about the date he was to be admitted, which resulted in a whole lot of stress. As a result, My husband requested the wrong dates to take off of work and now he can't change it. I needed him to help me with the other children, so I can stay with my son in the hospital. Therefore, we cancelled the video EEG and I'm so frustrated b/c I'm not too sure about this dr. I feel like maybe we need to go back to who we were seeing before, considering this dr has yet to tell us anything new. any suggestions? sorry this is so long!

Comments

Re: need advice...have 6 year old twins w/epilepsy

Submitted by EarthMonkey on Fri, 2007-07-27 - 23:16
Did the first Dr suggest the Video eeg? I would stick with the one who seems the most willing to try and find out what the symptoms actually are.

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