Another Newbie...Hello!

[chop456]

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.

 

[Nakamova]

Hi chop456, welcome to CWE!

It makes sense that you want a neurologist that gives both you and Paige confidence. It's worth shopping around and being persistent. One thing to ask a prospective neurologist: What side effects to look out for with lamictal, and what other med options there are if the Lamictal doesn't do the trick.

Best,
Nakamova

 

[chop456]

Just wondering .. Beyond the potential rash are there any side effects you are aware of that I should be watching for? this is all so new and a but overwhelming! Thanks in advance! oh ... Am I being too optimistic that lamictal will do the trick or is it more common not responding to the first AED tried and needing to try a few.

Beth

 

[Nakamova]

Reactions to meds vary substantially from person to person, so there's no way predict how Paige will do. I'm "medication-responsive" and did fine on the very first med I was prescribed (Dilantin). I'm on Lamictal now. The side effects are basically tolerable for me, and it controls my tonic-clonic seizures. I did have some side effects when I was starting on it that were unpleasant (very poor restless sleep, vivid nightmares, headaches, hair loss). Those side effects went away eventually, but I still am bothered by others (blurry vision, dry mouth and eyes, mild chin acne).

I hope Lamictal ends up being a good fit for your daughter. If not, there are other meds out there, such as Valproate (often the first-choice for treating myoclonic seizures).

 

[acpollard2010]

I as a teenager (16) was diagnosed with jmc as well put me on depakote right away like he said depends on the person how they respond im 29 now Im on lamictal keppra and plenty more now generalized smart to find doc. She is good with.i did not respond well and been lamictal for yrs and it has side effects that can be hard as dosage gets higher pretty much what he said with me just a little worse but most r like it.