tag:blogger.com,1999:blog-8909505636228579775.post4045748806949553137..comments2023-10-16T03:02:42.896-07:00Comments on Nathan Jeffrey's Blog: Jaylie - 10 months 3 weeks - Day 3 of ACTH injectionsNathan Jeffreyhttp://www.blogger.com/profile/18293591829767831109noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-8909505636228579775.post-62880417135424105592010-10-13T15:40:39.330-07:002010-10-13T15:40:39.330-07:00Thank you for the info! Yes, agreed (on the feedin...Thank you for the info! Yes, agreed (on the feeding thing), we have also found we she starts to get fussy if we feed her she settles down for a bit.<br /><br />Annette, thank you for your post! It is encouraging to hear from other people whom are going through the same thing. Please keep us up-to-date on how this journey goes for you as well (we will follow your updates as well). I am SO glad to hear you are seeing positive results in battling IS -- that is super exciting to hear!Nathan Jeffreyhttps://www.blogger.com/profile/18293591829767831109noreply@blogger.comtag:blogger.com,1999:blog-8909505636228579775.post-78107171947762910372010-10-12T05:39:45.228-07:002010-10-12T05:39:45.228-07:00I just wanted to mention to make sure you are feed...I just wanted to mention to make sure you are feeding her ridiculous amounts of food. Assuming she can eat without any problems (I didn't read her whole history). We found that as long as my dd was fed, she was not nearly as irritable. We fed her an 8oz bottle every 2 hours around the clock, 64oz a day. We were able to have some happy play in between the screaming after she was fed.<br />Good luck as I know how hard this time can be.Scrapbooks and Treadmillshttps://www.blogger.com/profile/07558756940415594162noreply@blogger.comtag:blogger.com,1999:blog-8909505636228579775.post-71932702501356127232010-10-12T04:45:49.450-07:002010-10-12T04:45:49.450-07:00PS-I just updated my blog from my Facebook Notes w...PS-I just updated my blog from my Facebook Notes with our story just so you could read our journey if you'd like. LoveMyRocko the 2010 entries are all the IS updatesAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8909505636228579775.post-32182792914021502442010-10-12T04:18:30.077-07:002010-10-12T04:18:30.077-07:00I wanted to post that I found your link from the I...I wanted to post that I found your link from the Infantil Spasms board on the Baby Center website. My 16 month old was diagnosed with IS on Aug 3 2010. This has been the most difficult unknowing season I have ever walked through in my life. We tried an oral medication for a month without 100% success so like yourselves found ourselves facing the ACTH route. I agree or must say that the intial shots were the most horrific experience I have ever had to endure as a mother although over time they got "easier" in the sense that I didn't feel all thumbs and was able to get a quick routine so they weren't as tramatic it seemed. Please remember every child responds differently as I have found that there is no black and white area with IS it all seems gray and no ones treatments are exactly alike but I did want to share that after 4 days of ACTH in the hospital we never saw another seizure physically and an EEG showed remarkable improvement. After 1 month and 5 days we had an EEG and it showed 100% normal so as of Sunday 10/10/10 we are done with the ACTH shots. In a month we will do another long term EEG to begin weaning her off her oral medication. So far she seems to be doing great and appears to be on track for her milestones. My heart and prayers go out to you and just wanted you to know we have been right where you are and are happy for you that you have such a wonderful support system. I will post my email for you back on the IS board (Introducing Yourself) Blessings-Annette (RaeganGrace)Anonymousnoreply@blogger.com