Online Magazine Dedicated to Angelman Syndrome
I wonder if Professor Edwin Weaver could help me with this query?
I met him at the Australian Conference last October. My name is Anne Fulcher from New Zealand. My daughter, Kirstie, will be 40 next month and is on 2-1/2 tablets day of Lamotrigine. She hasn’t had major fitting for years (touch wood) and from what Bernard Dan said, as the Angelmans get older, their major fitting ceases.
What I wondered, as no-one in NZ seems to know much about Angelmans, your opinion on whether I can start making waves into getting Kirstie off this medication. If she’s not major fitting, then why stay on it??
If there is any reason not to take her off, can this be explained and I won’t go any further with it.
I think this question is more for your neurologist who is caring for Kirstie. When was the last EEG? This could tell you if there is any seizure activity and might give the Neurologist the information they need to make that decision.
Hi I would like to put my daughters name on the list for clinical trail cure angelman syndrome. Tyler Wilson 11-12-11
Hi Jacqueline, we will let you know as soon as information about the upcoming clinical trials is available. Then it will be up to you to determine if the medication or procedure is appropriate for your daughter.
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