(If you’re new here, Charlotte, or Charlie as we call her, is our 23 month old daughter who has a rare genetic disease called CDG-1p. CDG stands for congenital disorder of glycosylation and currently there is no known treatment or cure. Charlie is one of less than 15 people who has ever been diagnosed with her specific variant of the disease.)
So, a little back-story: in late 2016/early 2017, Charlie had a seizure-free stint of about 8 or 9 months. We had begun weaning her off of all her meds to see if she could remain seizure free without medication. Right at the tail-end of the wean, her seizures resurfaced.
It was around July of last year, and we were devastated.
And since then – so basically the past 6-7 months or so – we have been trying to get her seizures back under control but with no luck.
Finally around 2-3 weeks ago, we decided to try the exact same medication protocol that had gotten rid of her seizures the first time to see if they’d work again. If they worked once, perhaps they’d work a second time, right?
The logic makes sense (like duh), so perhaps you’re wondering why we didn’t just do that in the first place.
Here’s why: the medication cocktail that initially got rid of Charlie’s infantile spasms, which are the specific kind of seizures she has, included a nasty med called Prednisolone.
Prednisolone is a steroid, and when Charlie was on it the poor baby just seemed miserable. She was insanely irritable and fussy, had erratic sleep patterns, and overall just seemed uncomfortable and unhappy the majority of the time.
Not a fun thing to watch your baby go through, and frankly not a fun thing to have to deal with as parents.
So we’d been trying to avoid the steroid this second time around to see if we could treat her seizures without it. But alas, six months went by with no letting-up of the spasms, and I was just over it.
We asked our neurologist if we could re-try the same med protocol that had worked for Charlie initially, and she conceded.
SO, we started giving Charlie Prednisolone about 2 weeks ago, along with Sabril (Vigabatrin) and Clonazopam. And you guys…
Charlie has been seizure-free for over a week!
Yahooooo! That is the good news that I wanted to share with you today. So far, the meds seem to be working and we could not be more elated and grateful. God is good and prayer (and the right med cocktail) works! 🙂
Admittedly, all the yucky side effects we saw from the initial use of the steroid have been present this time around too. Poor Charlie has been insanely fussy, not sleeping well, and wants to be held literally at all times. And if she’s not being held, she is fussy fussy fussy. That includes the night-time hours when all of us would like to be sleeping.
So it’s been rough over here, not gonna lie.
But the fact that at least for the time being the meds are working and Charlie is no longer having seizures on a daily basis, multiple times every single day – well, I don’t have to tell you that that makes all of this totally WORTH IT.
Where we go from here: we will begin a very, very slow wean off of the steroids starting today actually. Charlie’s wean off the steroids will be drawn out over several weeks, and then we will discuss a very slow wean off the other meds as well.
The hope again is that she can be seizure free without any medication.
We’re also accepting the fact though that she may need to be on something ongoing to remain seizure free. Frankly as long as the potential side effects of the meds are minimal or unlikely, I am totally ok with that.
It beats watching your baby girl have clusters of seizures multiple times a day, every day.
As far as feeding tube life is concerned (Charlie got a G-tube put in back in December, which you can read about HERE), Charlie is slowly but surely putting on weight and all seems to be going pretty smoothly in that department. It hasn’t been without its hiccups, including 1 trip to the ER when the G-tube totally came out and then having it get infected once as well (sigh), but overall we have zero regrets about going the G-tube route.
Speaking of G-tubes, the top pic in this post is of Charlie wearing the cutest little onesie from a shop that makes clothing specifically for tubie babes. It’s called Little Birch Shop, and if you or someone you know is fed by a feeding tube, you should definitely check it out. So adorable.
So there you have it. There’s the update!
Thank you so so much for your prayers for baby girl. PLEASE KEEP PRAYING! We finally feel like we’re moving in a good direction again, and we just want this to continue. We’re choosing to hope and believe that it WILL.
Have a Magical Monday!
Thanks for reading.