chop456
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I have been lurking a while (actually trying to read as much as possible and educate myself on this new path of life) and have finally decided it is time to introduce myself! I'll try not to ramble too much.
I am Beth, mother of Paige (14). Paige was diagnosed with JME on Feb. 17 of this year. Paige had been complaining of dropping things and her arms twitching since late January. She was persistent with me (way to go, Paige!) and kept telling me things were not right. Fast forward to February 15 - big twitch buckled her leg and she fell. The next 3 days consisted of ER visit, MRI and EEG. Luckily She was diagnosed within 72 hours and started lamictal (generic form) on Feb. 18. She is still only taking 25mg in the morning, so not much has changed with her twitches. So far she has not had any other seizures beyond these morning myoclonics. Since we do not have a neurologist yet - she is staying at this 25 mg dose.
The sad part was that Paige and I were training for the Princess 1/2 marathon in Disney when this all started to happen. No 1/2 marathon ... this year. She was so upset. We did go to Disney and enjoyed our time together. She is bound to run it next year!
We are currently "shopping" for a neurologist. It sounds funny, but we want Paige to be very comfortable with who she is going to work with. Our 1st appt. was at Children's Hospital with a peds. neurologist. Did not feel right. Now we are meeting at the regional epilepsy center on Wednesday. I have heard good things.
The journey has started.
I am Beth, mother of Paige (14). Paige was diagnosed with JME on Feb. 17 of this year. Paige had been complaining of dropping things and her arms twitching since late January. She was persistent with me (way to go, Paige!) and kept telling me things were not right. Fast forward to February 15 - big twitch buckled her leg and she fell. The next 3 days consisted of ER visit, MRI and EEG. Luckily She was diagnosed within 72 hours and started lamictal (generic form) on Feb. 18. She is still only taking 25mg in the morning, so not much has changed with her twitches. So far she has not had any other seizures beyond these morning myoclonics. Since we do not have a neurologist yet - she is staying at this 25 mg dose.
The sad part was that Paige and I were training for the Princess 1/2 marathon in Disney when this all started to happen. No 1/2 marathon ... this year. She was so upset. We did go to Disney and enjoyed our time together. She is bound to run it next year!
We are currently "shopping" for a neurologist. It sounds funny, but we want Paige to be very comfortable with who she is going to work with. Our 1st appt. was at Children's Hospital with a peds. neurologist. Did not feel right. Now we are meeting at the regional epilepsy center on Wednesday. I have heard good things.
The journey has started.