tag:blogger.com,1999:blog-4997156159638877174.post2088947351167828114..comments2023-09-26T00:25:51.171-07:00Comments on Little Wonders: TRYING HARD TO KEEP THE FAITHHeatherhttp://www.blogger.com/profile/04209967185741239050noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-4997156159638877174.post-68513167614761572832008-03-26T14:09:00.000-07:002008-03-26T14:09:00.000-07:00Sam was on ACTH for 14 weeks... and although the s...Sam was on ACTH for 14 weeks... and although the side effects are horrible his were not as bad as most. I am sure that your neuro is on top of things but keep in touch and follow up with her cardio as well while on the ACTH. I will say that although ACTH was Sam's miracle drug he continued to have HYPS for nearly 1 year after his last physical seizure... so he looked fine but his brain was still lost in chaos. But it did work. You have seen Sam today... he is naughty and doing things we never could have hoped for him to do. Slow and steady wins the race. Take a deep breath... it is ok... the benefits of ACTH greatly out weigh the side effects. Hugs to you all...and best of luck. OH and ask for some Emla cream or Ela-Max (same thing but they changed the name) to rub on the injection sight to numb the skin... it will make you both feel better.<BR/>raeraehttps://www.blogger.com/profile/03787907076803945372noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-20196294892958308372008-03-26T08:18:00.000-07:002008-03-26T08:18:00.000-07:00Like you, I was scared by ACTH. And put it off for...Like you, I was scared by ACTH. And put it off for short time. But after doing lots of research...I was more afraid not to give it a try...because for so many children it proves to be the one that works.<BR/><BR/>Trevor has not had a spasm since his 4th injection (11/07) and no more hyps! His EEG is still grossly abnormal...but we are SO happy for the improvement ACTH did give our little guy!<BR/><BR/>Now...we did suffer some of the side affects. Trev's BP was quite elevated...immediately after his first injection in fact! It was monitered 3x weekly by a visiting nurse...altho I would recommend getting your hands on an at-home BP kit. We were unsuccessful in finding one ourselves...but it would have offered such comfort. Trevor also suffered from a depleted immune system which had us in the ER 3x during his 5 week course! Each time we were able to go home though. His cortisol continues to be low...and needs to be monitered for the next 6 months via bloodwork.<BR/><BR/>Even though it was an awful, dark, scarey time...I wouldn't change it because it did help Trev.<BR/><BR/>One piece of advice a vetern ISer gave me which was invaluable was to demand an EEG half-way thru to see if ACTH was making a difference. If it wasn't then to discontinue the course. Many many neuros do an EEG 1/2 way thru...and then a follow up a month or so after the last injection. <BR/><BR/>I'm sorry for the book...ugh I hate that I can't be more concise! But I really wanted to share this with you as you move forward! <BR/><BR/>Zoey is beautiful...and she has an amazing beautiful mommy! <BR/><BR/>...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-82246394700187118892008-03-25T22:22:00.000-07:002008-03-25T22:22:00.000-07:00I do love the new header...just look at that smile...I do love the new header...just look at that smile when you start to lose the faith. She'll get through this, she's one tough little girl. It's just another bump in the road. Sending hugs your way tonight!<BR/>Carey and ChelseaCareyhttps://www.blogger.com/profile/01399597037132075637noreply@blogger.com