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up-per

Dr. Neuro called with Trevor's labs from the other day.


His Zonegran levels are currently 23.3


And the *recommended* range is between 20 -43 .... so she wants to increase one more time prior to beginning Vigabatrin.


So we're now at 75 milligrams twice daily. Breakfast & bed-time. Stirring in chocolate milk has worked like a charm!


I'm not going to pretend I understand the whole concept of levels and such. Reality is...I don't buy t that they understand either. This would be why we play the upper-downer game. Constantly increasing...decreasing...cocktailing...doses of meds that are not recommended for children who have yet to reach puberty! But we do it anyway...hoping...


And since we've seen some positive affects since beginning Zonegran...I'm okay with sticking to it...


Although it would be nice to see a decrease in seizures too!


I've actually been wondering if Trevy's cold is to blame for some of it? If he's still snotty & cranky tomorrow I'll be taking him to Dr. Pedi...

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Mama Skates said…
good luck with the change - hope u see a decrease in the seizures ASAP!
October 29, 2008 at 8:31 AM
labonte4 said…
THis sooo reminds me of us on Depakote. We could NEVER get her levels to where we wanted them....and when we finally did....she was so wobbly and zonked...we weaned *LOL* I think the waiting is the hardest part. Especially when your still seeing seizures...you feel like your "wasting" time.

I do feel that in most cases it is def. worth it to wait out an increase...you just never know what will work, and if you don't try...you'll never know. I hope the Zon increase really makes a dent in the seizures.


R
October 29, 2008 at 9:50 AM
KC's Warrior Mama said…
I'll be wishing and praying that the Zonegran increase does the trick!
October 29, 2008 at 10:03 AM
Danielle said…
Thanks guys!

So far he just seems VERY wobbly! But we're still hoping!

Wow B you nailed it. I DO feel like it's wasting time. But I suppose you're right. Besides...if Vig doesn't help I'll just be in for a whole month of mourning anyway! *smile*

...danielle
October 29, 2008 at 2:06 PM
Monica~ James~ Connor said…
It's a never ending battle it seems like. We go up 2 more times on the topamax, and then once he is settled on his "final" dose we get to start weaning his Depakote. Fun times!! uggghhh. I counted the other day and Connor takes 9 pills in the am, 2 at lunch and 11 at night. I can barely remember to take my multivitamin everyday. It makes my heart frown to think of all of those drugs in his system. I've thought of taking them all one day too to see how they make me feel...I'd probably be a grump too.
October 29, 2008 at 5:36 PM
Shanna Grimes said…
I hate the upsie downsie game too. I will there was an easier way. Hope the new does the trick. Hugs, S
October 30, 2008 at 12:19 AM
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