Sophie is on Day 26 of ACTH...only 37 more days to go. ONLY 37 more days!!! Seems like a long time. Brandon and I have a pretty good system down on giving her the shot but it stills isn't any easier emotionally. Especially since we are still on twice a day (for another 9 days).
Her seizures haven't gone away. They are better but they are still there. She is not having as many and they are much more milder. She hasn't had one of the "ones that makes her cry" seizure for quite some time now. It is encouraging that they are better but what does this mean for her. She is absolutely miserable. Always hungry. Always tired. Huge. Uncomfortable. So even though her seizures are better, she is too miserable to try to learn anything new. It is such a struggle to get her to even smile. Her two favorite signs at the moment..."eat" and "night-night". Every time I lay her down to change her diaper, she signs "night-night".
Flashback 2 years and 2 months ago...Sophie started her first round of ACTH (May 11, 2006). Her seizures got better. They were much more mild. But they never completely went away. Once we weaned the ACTH, they came back with a vengeance. They slowly crept up to over a 100 a day.
If the ACTH was going to completely stop her seizures, they most likely would have stopped by now. So now Brandon and I are debating on whether to continue the high dose for another 9 days or start weaning earlier. 9 days may not seem like a long time but when it relates to ACTH...it is a very long time. Especially with a miserable, very hungry, moody, tired, bloated 2 year old. I will be talking with both of Sophie's neuros tomorrow to see what their recommendations are.
Her seizures haven't gone away. They are better but they are still there. She is not having as many and they are much more milder. She hasn't had one of the "ones that makes her cry" seizure for quite some time now. It is encouraging that they are better but what does this mean for her. She is absolutely miserable. Always hungry. Always tired. Huge. Uncomfortable. So even though her seizures are better, she is too miserable to try to learn anything new. It is such a struggle to get her to even smile. Her two favorite signs at the moment..."eat" and "night-night". Every time I lay her down to change her diaper, she signs "night-night".
Flashback 2 years and 2 months ago...Sophie started her first round of ACTH (May 11, 2006). Her seizures got better. They were much more mild. But they never completely went away. Once we weaned the ACTH, they came back with a vengeance. They slowly crept up to over a 100 a day.
If the ACTH was going to completely stop her seizures, they most likely would have stopped by now. So now Brandon and I are debating on whether to continue the high dose for another 9 days or start weaning earlier. 9 days may not seem like a long time but when it relates to ACTH...it is a very long time. Especially with a miserable, very hungry, moody, tired, bloated 2 year old. I will be talking with both of Sophie's neuros tomorrow to see what their recommendations are.
4 comments:
I hate that nothing is simple! Poor sweetie...I hate what ACTH does to their little bodies too! I'll be thinking about/praying for you guys this next week...I can't imagine the emotional toll it's taking on your heart! Lots of hugs!
...danielle
Sara and Laura are thinking of you girls!! Please give Sophie a hug from us and tell Sophie only a couple of more weeks and Sara will be there to play with her!!! :)
I can't imagine how hard this is for your family, but I know you will make the best decision for Sophie. Wanted to stop in and say "Hi" and we will be keeping you in our thoughts. Take Care!
Elaine,
I can only imagine how much harder it is when they are older. We did Ava's at 8m., and I remember how physically & emotionally draining it was then. Try not to get too discouraged, there are sooo many ups and downs with this process of med trials & therapies. I'm a total slacker & haven't updated Ava's blog in a few weeks, but we have an appt today....so I'll try tonight.
We had sooo much riding on the Keto being "IT" for us! I thought ACTH was going to be "IT", I even had a glimmer of hope that Depakote would be "the one" *LOL*
It took me awhile to even try to take things just one day at a time. You guys did the right thing by trying it again, even though it hurts seeing Sophie miserable. If they could only understand that we do all of this because we love them so much, and want nothing more for them to know what it feels like to live a day without seizures.
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