Wednesday, July 12, 2006

Out with the OLD.... In with the NEW!

On Monday while waiting for her Vigabtrin to arrive our Neuro suggested to start with the weaning of one of her meds. So we opted for the Zonegran, this is the one we have been on since day one of seizures. We are very excited to get her off of something. She hasn't had any withdrawls so far. We will bring the dose down 25mg every 4-5 days until she is completely off of it. Right now we are just down to 100mg, Friday we will be down to 75mg. We are really hoping things will open up as we think some of these meds are holding back her development.
Come Tuesday afternoon we where very excited that her New med, Sabril/Vigabtrin had arrived in the mail. Not bad after coming from England, it took eleven days to ship.
WE started it this morning, (Wednesday the 12th) and so far so good. I saw 1 seziure this morning before I gave it to her and thats it. We are keeping our fingers crossed and doing some heavy praying that this is the one!!!! Well I must have jinksed it she just had 3 head drops : ( It Never fails!

I took her to the Dr. yesterday for a bad runny nose and she has a Summer Cold putting a hold on her classes until she gets well. But we had also raised a concern of her heavy breathing and breath holding spells she started about 5 -6 weeks ago when we upped her Topamax again. I read this is a more serious side effect. Her Pediatrician timed her breath holding it was 15 seconds! We feel like we can't breath sometimes when she does it. Its an all day thing and is scary. So our Neuro e-mailed me requesting us to go have her blood drawn - A Complete Metabolic Profile drawn. It measures the chemistry in the body including Bicarbonate, which is the concern. So we will be doing that tomorrow! So check back soon for updates on how she is doing and the test results! Also we go back to Nashville in a few weeks to have another EEG if the seizures stop with this new medicine!


Kelly said...

Let's pray for THAT, huh?

So glad to hear she's trying this after all I've read about it. I know we've had some great success with the #1 LGS drug, so I'm looking forward to her doing well with the #1 IS drug!

Always look forward to your posts :)

JSmith5780 said...

Got my fingers crossed...keep me posted. What dose is she on? How much does she weigh? Remember one of the first things you'll notice is a 'restlessness' about her. She may have some trouble settling into sleep. Don't give to late at night...or use Melatonin to help regulate sleep. A lot of IS kids use the melatonin...our neuro recommended it. You can either get it as a pill over the counter (1 or 3mg) or get a script for the liquid version.
Jen mom to Austin, Ben & Connor