tag:blogger.com,1999:blog-2600278351249979209.post7965125198192022301..comments2023-06-22T04:20:49.280-07:00Comments on happy being trevy: well that was a nightmare!Danielle http://www.blogger.com/profile/04484341169494632974noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-2600278351249979209.post-86795264472189260182009-07-11T18:42:31.385-07:002009-07-11T18:42:31.385-07:00Hollis loved that stuff! Really! She's into t...Hollis loved that stuff! Really! She's into the sour thing, like pickles, etc., so that's not a big surprise, but it was like a little treat for her to take it when she was on it! WEIRD CHILD. Topomax has always been the most effective drug for her, but it is evil. She lost 25% of her body weight before her surgery, and a good portion of her hair from malnutrition, as a result of the side effects of Topomax. I wish we could take her off it, but it really is the only med that has conclusively reduced her seizures.Hollishttps://www.blogger.com/profile/06876535387934494390noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-10312624992162945532009-07-09T08:32:18.601-07:002009-07-09T08:32:18.601-07:00Sophie was on Cytra-K crystals when she was on the...Sophie was on Cytra-K crystals when she was on the ketogenic diet. So she took it for about 6 months. She never had a problem taking it. When I talked to you the other day, I was thinking of the NanoVM she was also on at the time that was a powder. We dissolved the Cytra-K in water since she was restricted in what she could eat or drink while on the diet.Sophie's Story by Elainehttps://www.blogger.com/profile/00415731740298071423noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-66961012448376861282009-07-08T10:53:31.006-07:002009-07-08T10:53:31.006-07:00The only thing worse than a new med not working......The only thing worse than a new med not working...<br /><br />Is that new med helping...<br /><br />Only to have to pull it because of side effects.<br /><br />And having to wrestle your baby down while he's fighting you.<br /><br />I'm hoping you'll find a Trevy-happy way to get it in him so you can continue on with it!Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-8009916122165880282009-07-08T09:00:28.899-07:002009-07-08T09:00:28.899-07:00Jen...I'll give them a call on that. I think ...Jen...I'll give them a call on that. I think part of the problem is...they don't deal with this stuff on a regular basis. So stuff falls through the understanding cracks. Tell your cuz thanks! <br /><br />Jeff...dude...you are SO totally not allowed to encourage naughty non-eating behaviours! *wink* <br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-36234334544087394152009-07-08T08:40:06.630-07:002009-07-08T08:40:06.630-07:00Isn't it just aweful what we put our kids thro...Isn't it just aweful what we put our kids through!!!!<br /><br />Way to fight Trevor <br /><br />If it taste bad im not eating it either<br /><br />( ok im kidding)<br /><br />Hope that process starts to go more smoothly and even more, hope that it worksDawsonhttps://www.blogger.com/profile/04109775702931251072noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-65836415294753611392009-07-08T07:49:04.351-07:002009-07-08T07:49:04.351-07:00Hey D. I called my cousin. She's a pharmacist ...Hey D. I called my cousin. She's a pharmacist tech at CVS. She's my go to person on all things med related. She looked in the FlavorRX book and it states is CAN be added to citric acid-sodium citrate (generic name of Cytra). She listed off like 10 flavors that can be added. SO I would go back to the Pharmacy and ask them to show you the FlavorRX book.JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-58069766883983134702009-07-08T06:22:50.749-07:002009-07-08T06:22:50.749-07:00We're weaning the Banz...but slowly. He's ...We're weaning the Banz...but slowly. He's at 1 tab am & pm. We'll go down again tonight.<br /><br />And with Top he's at 75 am & pm. <br /><br />It's not a super high dose...but I don't want to go up any higher unless we can resolve this CO2 issue. Ya know...<br /><br />I asked the pharm about flavorRX...but because there is no written data about interactions they won't use it. <br /><br />I'll just give the juice a go...and hope that we can get it all in him. <br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-62052399888378338632009-07-08T05:53:31.018-07:002009-07-08T05:53:31.018-07:00What meds is he on right now? I didn't think h...What meds is he on right now? I didn't think his Top dose was that high. Maybe the combo of the meds is making things worse?<br /><br />Do you read Regan's blog? She was taking the bicitra. Maybe her mom can give you suggestions for how she mixed it.<br /><br />good luck!JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-17750448407132833322009-07-08T05:11:09.461-07:002009-07-08T05:11:09.461-07:00I tasted it...and it's pretty sour. Jonathan s...I tasted it...and it's pretty sour. Jonathan says it tastes like flouride. Ick! But I think the major issue is HOW MUCH he has to take...<br /><br />10mls three times a day! <br /><br />I mixed it with a lot of juice this morning...and he seems to be handling that better. Half a sippy cup left. <br /><br />All we can do is try. <br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-41273077114134200522009-07-08T05:05:41.924-07:002009-07-08T05:05:41.924-07:00How bad does it taste?How bad does it taste?blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.com