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Re: [Families of Angelman Syndrome] Digest Number 348 REPLY TO NATALIE RE: EEG

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  • 2yz4u
    Hi Natalie, Welcome! Your description of Megan is similar to my daughter s. My daughter is 3 and a 1/2 yrs old she had her first seizure in December 05, it
    Message 1 of 1 , Mar 3, 2006
      Hi Natalie,

      Welcome!

      Your description of Megan is similar to my daughter's. My daughter is 3 and a 1/2 yrs old she had her first seizure in December 05, it was a Febrile Seizure, or so we were told. The neurologist ordered an EEG which was done in January, it came back abnormal indicating Epilepsy/Absence Seizures. I asked for a retest, that was done on 2/17 and that also had the same result. Jennifer's school has been notified of the results of her 1st EEG and have been keeping logs of when she has them and for how long. They write this information daily in her Journal, which is sent home with the day's progress. She hasn't had a 'staring episode' since Feb 3!!! We have an appt with a neurologist on 3/20, and I am OPPOSED to medication. I will NOT medicate her unless we see she is having seizures! But we have a Catch 22 as well, she needs to have certain surgeries done and the anesthesiologist will not put her under general anesthesia if she is not stabilized on medication! SO we have to discuss all of this w/her new neurologist on the 20th.

      Jennifer will also be retested for Angelman Syndrome on 3/16 when she sees a Geneticist. She was tested for it in 2004 but the results came back negative. However, she does exhibit a lot of the characteristics with just a few exceptions. SO to be absolutely sure, I am having her retested. And hopefully if she does have it the result will be positive and if she doesn't have it, then hopefully the negative result will be accurate!

      I totally agree with you that as parents we know our children so much more than any doctor, and therefore, WE ARE the best advocates for our kids!
      Has Megan been tested for Angelman's Syndrome?? How old is she now? And is she verbal?

      Cathy
      Mom to Jennifer 3.9 and
      Lauren 11
      _______________________________________________________________________
      ________________________________________________________________________

      Message: 1
      Date: Fri, 03 Mar 2006 20:01:12 -0000
      From: "exactly1try" <exactly1try@...>
      Subject: EEG

      Hi, I'm Natalie Twxeira. I sent a message yesterday about my
      daughter Megan. I am knew to this messages. I just wanted to say
      that when Megan was about a yr old she got tested because she was a
      little stiff. She was sent to a neurologist on Oahu and had a EEG
      done. We were told that her brain waves were abnormal and she was
      having very mild seizures. We told the doctors that we didnt see
      any and were told they were so mild we wouldnt see them. Megan was
      put on Tegretol and later was put on Depekote. The day we put her
      on the meds we began to see her seizures. She had seizures weekly
      and if was hot or she was a little sick like a cold her temp would
      shoot up to 103 or higher. At 8 yrs old she was diagnosed because
      someone saw a little girl onHEYN T t.v. w/AS she said I should check
      the internet. After checking I broke down because it discribed Meg
      to a t. It also said that AS kids have abnormal brain waves. I
      decided to slowly take Meg off her meds. The nurologist said we cant
      do that. Since Meg was tsken off her meds she hasnt had a seizure in
      8 yrs (knock wood). I dont know if it was because we took her off
      but I do know she is very happy and not as drugged. She would look
      tired and not as energetic know theres no stopping her. Parents know
      there child better than any doctor. How can they know our children
      better than us when they see them a few times a yr. Trust your
      instincts and your hearts.











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