Almost off of ACTH! (and the host of meds/treatments that go with it)
I'm so excited! Audrey has been on ACTH for almost 2 months now (3 weeks at .5 mL then from then on weaning off), and in a week if all continues to go well we should be off of this nasty steroid!
I can't complain too much because honestly the worst thing we've dealt with it except for an adjustment period when she was first on it, was the weight gain. She wasn't nearly as fussy as some have explained. Or maybe she was just fussy and we were used to it because she's been colicky since about 2 weeks old on (even though she didnt have noticeable seizures til right before she turned 4 months). But she has gained a lot of weight...But thankfully no complications from it other than not moving around as much because its too much work for her to do with all that weight she is carrying around.
Anyway, her neuro sped up the tapering off process because she is doing so well (no seizures at all since she was in the hospital 2 months ago) and the weight gain was more than a pound per week and she had stopped rolling over or putting weight on her legs because of it and he didnt want it affecting her development too much so he sped it up to taper off every 3 days instead of once a week. We are now down to .15 mL, on Thursday to .1 mL, on Sunday to .05 mL, and from there on Thursday at her appointment we will discuss either stopping or going down even less, but beyond .05 it is so hard to get enough in the syringe to administer it.
She has had no side effects beside the weight gain from the steroid; no diabetes, no blood in her stool, no high blood pressure.... :-) And not nearly as fussy as some stories i've read. In fact, she was pretty cranky when she was first on it, then through the middle portion of all this she's actually been really happy and a very easy baby. Easier than before the seizures ever started. Now she's getting a tad more cranky but not from the seizures...she's got 4 teeth about to come through any moment :).
She's now only waking ONCE a night to eat, as opposed to her eating every 1 1/2 to 2 hours round the clock which is nice.
Man, i wont know what to do with myself, not having to worry about shots, about numbing creams an hour before, about checking her urine for glucose and her stool for blood, and not having to give Zantac to counteract the effects of the ACTH! Only Topamax and B6 morning and night? AMAZING!
okay sorry for rambling I just got a lot of sleep last night for the first time in who knows how long and my baby girl is doing so well and i'm just relaly excited. *praying her seizures dont come back when she gets off of it*
6 mo old with IS. New to group.. questions.. need support!
- asherraifsmom
on Mar. 30, 2010 at 8:29 AM