We are on day 3 of giving Jaylie the ACTH shot each morning. Jaylie is responding well so far. Her seizures seem to be less frequent and less intensive.
Part of the side effects of the shots are irritability of which WE are definitely experiencing.
I have to say, injecting Jaylie with the ACTH gel is a slow painful process for all. Giving these injections to your own child is the worst experience I've had so far.
Going through all these events this last week has been extremely taxing on all of us exacerbating the cracks and imperfections in us. Your prayers and support are priceless!
People ask how we make it through these times, I immediately respond stating we would not have made it through these times without the love, prayer and support of our support group, our friends and family ( all of you! ). You all have really made an irremovable impact on our lives, thank you!
I've mentioned this before ago but feel it is worth mentioning again, Kristina's mom has been an absolute live saver! Debbey has a gift for dealing with children and additionally a gift for children that have special needs. Debbey has many priceless years of experience working with children to over come adversities. Debbey's impact on Jaylie's life has been profound. We are appreciative of the work Grandma Debbey does with Jaylie on almost a daily bases. Being new parents we have no idea what we are suppose to be doing. And being parents of a child that needs extra special care as our first child puts us at an even more of a disadvantage. Debbey's experience and support has been a true God send for us. Debbey has gone above and beyond the role of Grandma and has propelled herself into Super Grandma status! Thank you Debbey! We love you!
Debbey is only one of the many people ( both friends and family ) that have provided us and continue to provide us support.
Thank you all! We do see and acknowledge your giving and sacrifice for Jaylie. Thank you thank you thank you!
Nathan, Kristina and baby Jaylie
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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)
ReplyDeletePS-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 updates
ReplyDeleteI 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.
ReplyDeleteGood luck as I know how hard this time can be.
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.
ReplyDeleteAnnette, 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!