tag:blogger.com,1999:blog-2600278351249979209.post1210506489956344926..comments2023-06-22T04:20:49.280-07:00Comments on happy being trevy: a picture worth 60KDanielle http://www.blogger.com/profile/04484341169494632974noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-2600278351249979209.post-36754808853221218032008-09-24T16:52:00.000-07:002008-09-24T16:52:00.000-07:00Jamie...we start weaning tomorrow! I can't wait to...Jamie...we start weaning tomorrow! I can't wait to be done with this drug! It's harder to push the needle in when your baby is still having seizures everyday...<BR/><BR/>Thanks for the love though! ((((((((hugs)))))))))<BR/><BR/>...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-82833192241913022652008-09-24T08:01:00.000-07:002008-09-24T08:01:00.000-07:00I want to cry for you right now...the pics of the ...I want to cry for you right now...the pics of the ACTH bring memories for me..suuuuch a hard time..I am too struggling with madies seizures....seems like the dawn of time we began this huh?<BR/>Lots of family and love gets you thru...keep us posted<BR/>Jamie. madisons mommy.Jamiehttps://www.blogger.com/profile/08806816819294256310noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-70026410223652164642008-09-23T11:24:00.000-07:002008-09-23T11:24:00.000-07:00Shanna...do you ever think it's weird how much...Shanna...do you ever think it's weird how much we have in common? The hospital gave us bandaids for Trevy...guess what was on them? Hello Kitty! lol We figured he was young enough to handle the pink-a-lish (as Bristel calls it)<BR/><BR/>Marrisa's daddy...so you're to blame for that silly title sticking in my head! I typed like 40 different ones in & deleted them! But that's it...I'm changing it! I can't stand cyber-stealing! *smile*<BR/><BR/>Monica...I'm with you...we're lucky & they're lucky that they are so darn cute! Sounds like our boys are going to be Vig buddies! <BR/><BR/>B...you had it SO easy! lolDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-7777209836075593852008-09-23T05:43:00.000-07:002008-09-23T05:43:00.000-07:00Monica- Vig really shouldn't be feared. The "best ...Monica- Vig really shouldn't be feared. The "best part" is you generally know within a month or two if it's going to work. If it doesn't work, then viusal issues aren't even a concern. IF, IF there are going to be visual issues it's after high dosages and long term treatment. That said, my Austin was on it for over 4 years. He had ERgs every 6 months or so and has never had any problems.<BR/><BR/>Also, the side effects are minimal. The worst part is the disturbed sleep. He was a very light, restless sleeper the entire time he was on it.<BR/><BR/>Good luck, please ask any questions!JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-69841583920242039462008-09-23T04:54:00.000-07:002008-09-23T04:54:00.000-07:00Looks a lot different from our ACTH days. We pick...Looks a lot different from our ACTH days. We picked up the FULL course at the pharmacy! Along with all our neeedles etc. Ahhhh...the good ole days! Back when it was ONLY 1,500 a vial!labonte4https://www.blogger.com/profile/09735721809260643457noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-79514663536986470112008-09-23T04:26:00.000-07:002008-09-23T04:26:00.000-07:00What a headache! I'm sorry it's not worki...What a headache! I'm sorry it's not working as well this time. We went to dr. Neuro yesterday....uggghhhh. It's a never ending battle with these kids isn't it? It's a good thing they are so darn cute and lovable! Vigabatrin might be one of our next options too. I'm just so afraid of the possible visual side effects. It's pretty bad when the DR tells you that your 2 year old child has already been through most of the meds out there. when will it end???? hang in there little Trevy & mommy!Monica~ James~ Connorhttps://www.blogger.com/profile/02401218928219589164noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-70761618851781658752008-09-23T03:46:00.000-07:002008-09-23T03:46:00.000-07:00Haha, you borrowed my headline about the same topi...Haha, you borrowed my headline about the same topic :DMarissa's Dadhttps://www.blogger.com/profile/10886161065528812876noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-9158705066616316712008-09-22T14:27:00.000-07:002008-09-22T14:27:00.000-07:00Wow! I can't believe that. So much rigamarole! W...Wow! I can't believe that. So much rigamarole! <BR/><BR/>We went through Children's Home Care. They delivered every Wednesday. We got everything through them. Biohazard container, needles, syringes, alcohol swabs, etc. The only thing they didn't give us was bandaids. We used the Hello Kitty and Disney ones. It made us feel better to cover the boo boo with something cute. Also, it was an X marks the spot of the last injection. Isn't it funny how you get a whole ritual down when you have to do it?<BR/><BR/>Sorry that it isn't going as well this time, but you never know. Maybe it's doing something in his little brain to make the next treatment more successful.Shanna Grimeshttps://www.blogger.com/profile/01863808423565134938noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-58247577409913929862008-09-22T12:39:00.000-07:002008-09-22T12:39:00.000-07:00Jen...we were already doing a short course...so we...Jen...we were already doing a short course...so we start weaning this week. And our neuro has already started to ball rolling for Vig. That's definately the next direction we're going. I'm praying that it gives us a miracle...because as brave as I try & sound...the thought of Trevy having surgery sends shivers to my soul! <BR/><BR/>Mama...lol...it's really not that complicated. It just stinks havin' to shoot your own kid up! But J is quite the pro...and today was the first day with only grumbling & no screaming! <BR/><BR/>Molli...we've had a good expirience with CuraScript...except for the one shipping error. But the representative is very nice. And we'll take all the prayers we can get! <BR/><BR/>...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-91445491892262656192008-09-22T11:06:00.000-07:002008-09-22T11:06:00.000-07:00Danielle,Curascript is who we dealt with when we g...Danielle,<BR/><BR/>Curascript is who we dealt with when we got Charlie's ACTH. We got all of our supplies through them as well. I am saying a prayer for Trevor. <BR/><BR/><BR/>Take care,<BR/>MolliMolli Salzmanhttps://www.blogger.com/profile/04531780235567843477noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-77306674090700957682008-09-22T09:12:00.000-07:002008-09-22T09:12:00.000-07:00wow! i have no idea how u keep all of that straig...wow! i have no idea how u keep all of that straight on top of running a household with 3 little ones! i'm confused just reading about it!<BR/><BR/>again - kudos to u for being such an advocate for ur son!<BR/><BR/>xoxox,<BR/>sharonMama Skateshttps://www.blogger.com/profile/10759832371415292719noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-33894276929617975082008-09-22T08:50:00.000-07:002008-09-22T08:50:00.000-07:00Life dictated by Questcor is NO life for anyone!I ...Life dictated by Questcor is NO life for anyone!<BR/><BR/>I am sorry Trevy's not responding well. Has there been talk of cutting the course short and trying Vig? Or something else?<BR/><BR/>I know, I know they always say wait it out, but at $30K a vial, I would be too impatient!JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.com