Friday, June 13, 2008

ACTH update...

I miscalculated how many vials of ACTH Sophie is scheduled to get. It is actually 8 vials. I spoke with the pharmacist that will be shipping the ACTH to us since local pharmacies no longer deal with it. I asked her how much the insurance is paying for each vial of ACTH and she said $25,000. Then I asked how many vials are being shipped. She said 5 vials (the other 3 vials will be shipped later). That is $125,000 worth of drugs in one small package. Each vial is 5ml. Yes...only 5ml. 5ml is equivalent to 1 teaspoon. So 5 teaspoons of ACTH is equal to $125,000!!! This will be the most expensive package that I will every receive.

So I spent about 2 hours on the phone today going back and forth with the pharmacist, the nurse from the local children's hospital who will be coming out 3 times a week, and the nurse from our neurologist's office to get everything squared away. We are set to start ACTH next week. Actually as early as Monday but I think we will start Wednesday night. I feel for Brandon who will have to give Sophie the majority of the shots (the visiting nurse will give it when she is here). I am just not strong enough to do it. There will actually be a 4 week period when Sophie will have to get 2 injections a day. She will be on ACTH for a total of 9 weeks.

I pray that ACTH works quickly and that we never have to go on the highest dose.


Reagan Leigh said...

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.

Anonymous said...

Hope this "liquid gold" can work some magic for you.


Jonathan said...

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.

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 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!

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!

You're heavy on my heart...I'll be praying & checking in for up-dates!