tag:blogger.com,1999:blog-29367137.post6666473091905059773..comments2023-10-09T05:02:54.951-05:00Comments on Our Sweet Sophie: ACTH update...Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-29367137.post-77907238474258009012008-06-15T13:45:00.000-05:002008-06-15T13:45:00.000-05:00I know this next week (and beyond) is HUGE...and e...I know this next week (and beyond) is HUGE...and even though you've been there before I'm sure it's still scary for you guys. <BR/><BR/>I'm glad that you didn't have to battle with your insurance company tho! Our's put us through hell. They would only ship vials as needed...in case Trev suffered side affects. I stopped trying to explain that the side affects of not getting treatment were worse. :o) The price jack is outrageous & in a way I don't blame the insurance cos...but we're talking about little kids & babies for crying out loud! Grrrrrr! ACTH is one of my soap-boxes!<BR/><BR/>My hubby did the shots too. I just couldn't. I think I finally believe that it was okay - that I wasn't letting Trevor down. Jonathan is actually a pretty good shot...only drew blood twice. *smile* He said it was more intimading holding $5000 in a vial than actually doing the jab! <BR/><BR/>You're heavy on my heart...I'll be praying & checking in for up-dates! <BR/><BR/>((((hugs))))) <BR/><BR/>...danielleJonathanhttps://www.blogger.com/profile/17937009118402856410noreply@blogger.comtag:blogger.com,1999:blog-29367137.post-81727147165821449802008-06-15T13:23:00.000-05:002008-06-15T13:23:00.000-05:00Hope this "liquid gold" can work some magic for yo...Hope this "liquid gold" can work some magic for you.<BR/><BR/>Love,<BR/>BarbAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-29367137.post-13570181243707221162008-06-14T11:32:00.000-05:002008-06-14T11:32:00.000-05:00I know how nervous you must be having to go back o...I know how nervous you must be having to go back on the ACTH. Our prayers are with you that this time will do the trick!! I know you said she was seizure free for a period the first time...did it also stop the hypsarrhythmia?? The ACTH didn't do anything for Reagan at all except maybe make her seizures worse! What is the dose that you are going to be giving her (I know there's a low dose and a high dose protocol...the doctors here use the low dose) and is it the same dose as you tried before?? We actually have some ACTH left over (almost a full vial), we're not exactly sure what to do with it. We're not going to use it, but it's just too expensive to throw away!! It's so ridiculous what they've done with the pricing!! We had a nurse that came out to our house to give all of the injections. Reagan only had one injection a day for 7 weeks, but it was such a relief that we didn't have to do it.Reagan Leighhttps://www.blogger.com/profile/10276933188608521229noreply@blogger.com