I am happy to finally report something...after getting the runaround in the am (the insurance company said that the hospital didn't give them the correct code for the tx and the hospital blamed the insurance company), we finally were approved and got here and Quinn received her first shot of ACTH. She did pretty well with the whole experience. Hopefully we will get the meds sent to our house without a hitch so we can go home on Thursday.
-Karyn
Breaking Point
1 year ago
It feels weird to say...but it is great to hear that the treatment has been started. I know how hard it is to give your own daughter an injection on a daily basis. Sophie went through 2 rounds of ACTH. Once when she was 7 months old and then again when she was almost 3 years old. I hope this is it. That the seizures stop quickly with minimal side effects. ACTH makes you VERY HUNGRY. Sophie practically ate around the clock. Quinn is in my thoughts as she begins this treatment.
ReplyDeleteMy thoughts and prayers are with you and your family. My daughter has IS and had to have ACTH earlier this year. I know how heartbreaking it is to have to administer the injections yourself and can totally understand the frustration of hitting the big red tape wall. Been there, done that. Hang in there. I hope Quinn responds well to the ACTH. For us, it did do miracles. Good luck.
ReplyDeleteI'm so happy to hear this news! Your posts were evident that you really needed something to happen that would move you all in the right direction! Hope all continues to go well. ~Courtney
ReplyDeleteHow frustrating! I'm thinking about you guys.
ReplyDelete---Jen
Hoping for a miracle. It is a tough journey but I hope it will be a short one for you.
ReplyDeleteThank goodness!! Hope the ACTH helps Quinn!
ReplyDeletePopping back to see how things are going and I am so happy to see that things are progressing forward.Sending you prayers as this journey begins for you all.Sending you strength in the trying moments and mostly, hoping that this is Quinn's miracle cure.
ReplyDeleteYay! I can't wait to hear how it works!
ReplyDeleteKaryn,
ReplyDeleteAre Quinn's IS considered seizures, and are they related to Ds? I ask because I had a parent contact me who has a 5 week old baby in PICU with possible seizures who wants to be connected to another parent who is dealing with similar issues. Please email me a ds.mama at yahoo dot com if I should send them to you/your blog. Thanks :-)