RE:Dr Dobyns - for Holman

May 30, 2010

Dr Dobyns is moving to the University of Washington in Seattle this summer.

We are in contact with them for an appointment in August.

His staff in Chicago (especially Ann ) has been very helpful is

setting this up.

The lady to contact in Seattle is Hofman De Young.

sarah.hofmandeyoung@...

Annelies

Mum to Finlay (8, BFP, microcephaly)

Re: Can't find right combo of meds?!?

Oh, just an FYI, Vimpat has not been tested on kids. It's been FDA approved

for just under a year.

Sent from my iPhone

On May 24, 2010, at 9:09 PM, " shawn " <kat_flynn05@...

<mailto:kat_flynn05%40hotmail.com> <mailto:kat_flynn05%40hotmail.com> >

wrote:

Hello everyone! I'm looking for some advice on anti-convulsant meds. for

those of you that are as unlucky as us as to have to watch our child have

seizures! :'o( Currently our son, , age 4 1/2 right sided unilateral

PMG, is taking 3 different meds. for his seizures 10ml's Trileptal, 4ml's

Keppra, and 4ml's Topomax, 2x a day. Well, we started with the trileptal

when his seizures started in Nov.07 and that controlled them with no break

throughs for nearly a year! Then he started having breakthroughs, we

increased, it was good. Then breakthroughs again a while after, increased,

under control again. Then last April, 2009, he started having seizures

really bad again! Then we finally added Keppra in May 2009 and his seizures

were back under control till off and on December 2009 till now. They started

getting bad again in March and we increased the Keppra, that worked for a

while but then again more breakthroughs! We added a new med., Topomax and

were

trying to wean him off the Keppra but he was still having breakthroughs, so

I was supposed to slow down the taper, but hadn't even messed w/it and he

was still having breakthroughs! As of now his neuro., is gonna be out of

town for 2 weeks, they gave me a " feel good " medicine increase (back up to

the 4ml's Keppra) until she gets back and we can discuss what we're gonna

do? However, it's still not helping, he's still having breakthroughs! Now,

I'm not the doctor but they're always asking me which meds. aren't working

cause I'm the mother blah blah blah, but I think that's the doctors job! Of

course I have my thougts, but I want answers from the doctor! I personally

think the Trileptal isn't effective anymore being that he did good,

breakthroughs, increased meds., then eventually added an additional med.,

and then started having breakthroughs again?!? I don't know, anyone have any

ideas or advice of good meds. you've tried/are taking?! I can't remember

the med. they were trying to have us give him before the Keppra that was

only available in sprinkle form, WHICH DID NOT WORK, he didn't like it!! But

any suggestions, advice on meds., anything would be greatly appreciated!

Thank you so much in advance!

, mom to 5 (in July :-O)unilateral right sided PMG

May 30, 2010

Perfect! Thank you so much.

Sent from my iPhone

On May 30, 2010, at 2:46 PM, " annelies van gysegem "