Its been around three weeks since Vada has been off of ACTH.
On the second day of not having an injections I saw "something". Luckily, Justin was right there next to me.
It was a very surreal moment for us both. I cant speak for Justin but I immediately tasted bile in my mouth. I knew what we saw the moment I saw it, but I didn't want to admit it. Facing fears, let alone one of my biggest fears was not something that I wanted to do that day.
I wasn't ready to say the word "seizures" let alone admit that my beautiful baby girl was having them again.
I wasn't ready to face the seizures. So, I began grasping for anything and everything that it could be besides seizures.
The type of seizures that Vada has (West syndrome also known as Infantile Spasms) can be difficult to diagnose because the movements from the seizures tend to look like the movements caused by Acid reflux or GERD. Even though the chance that it was Acid Reflux or GERD for Vada was slim to none, I had to rule it out before I was willing to start yet another risky medication.
Besides, if I hadnt ruled out all of the other possibilities then I would always wonder if I had made the right choice in starting this new medication. I guess, really that I just needed to hear that it wasn't GERD, even though in my heart I knew. I guess, it was just hopeful thinking.
About a week ago, I told Justin that I thought that originally we had seen Vada having seizures but that I thought that they were presenting themselves because she had a fever at the time.
More wishful thinking on my part.
These last couple of days have been full of odd movements and Vada's "suffering" has finally become apparent to me. I am no longer ""on the fence", I wont deny the seizures any longer.
They are back, they are stronger than before (in ways) and they are causing Vada to regress in areas that she was excelling in before.
Seizures are scary. Its something no one will fully understand until they themselves go through it, or have watched a loved one suffer from them. The damage caused by one single seizure can be devastatingly irreversible. Which makes them that much more frightening to deal with.
Treatment to stop the kind of seizures that Vada has is next to none. I am just as overwhelmed by the possible side effects from these medications as I am knowing that she is having seizures but allowing her to continue on having seizures is not an option I am willing to take.
Last night I spoke with Vada's neurologist and asked him if I could give her another injection of ACTH. The last time I gave her a single dose injection what we thought to be seizures, were stopped. Unfortunately, this injection did not do the same. At least not that I can tell.
I also emailed him some video's that I recorded of what I thought was Vada having seizures. He agreed that she was having cluster seizures again.
Tomorrow Vada had an appointment with her cardiologist. Which is still scheduled. After wards however, she will be seeing her neurologist and we will be filling out all of the paper work to get the approval for the new medication. I should have a good idea of what is to be expected by the end of tomorrow.
She is a strong girl. I cant believe how strong! Please continue to keep her in your prayers and I will continue to update as I find out what we will be doing.