On April 20th, Paige had another 24 hour Video EEG. I’ve been documenting her recent seizure activity on the blog and this particular EEG was to hopefully “catch” a seizure in action to determine an appropriate medicinal course to keep them at bay.
**Quick version** If you haven’t been keeping up, or are just tuning in, we’re pretty sure Paige is having tonic seizures induced by startles and being woken up.
As I predicted, our girl didn’t have one “episode” during our whole hospital stay! Believe me, we tried to induce one. A nurse did the light test where they flash blinking lights in her face, I woke abruptly while she was napping, and I tried to scare her a bit. (Her neurologist got a pretty good laugh watching me try to induce a seizure when they looked over the footage…) Nothing worked. Not. One. Thing! So, even though we didn’t really get what we were looking for, I ultimately took it as a good thing that she wasn’t having them and figured I’d get a call from the neurologist saying, “No change!”.
Paige’s neurologist called me this morning and told me that while they did not see any seizure activity her brain waves looked “scary”. I’ve explained this before, but Paige’s brain activity will never look normal because her brain structure is not normal. They can get a baseline for “Paige’s Normal” and still detect dangerous or problematic activity going on.
So, what does this mean? We don’t really know. Paige is acting as happy as ever and even had a burst of development! She has been rolling over unassisted, appropriately says “yeah” (in the cutest voice, might I add), shakes her head no (mostly when she doesn’t like a food or get a diaper change), and has been reaching and playing more and more. All the while, her brain is looking “scary” and we don’t know why.
What I do know is that she has been having some sort of seizure activity. In what capacity? We’re not sure but we’ve had to give her rescue med, Klonopin, a number of times and, while it’s worked, the fact hat we needed to use it means… something. We just don’t know what. We also know that seizure activity tends to change around age two and she’ll be that age in June. We know that we’ll have to deal with seizures in some way, shape, or form for the rest of her life. A leading Lissencephaly doctor at Boston Children’s told us that she has a 100% chance of having a seizure disorder, so there’s that.
1. Another round of ACTH injections. Paige has had a successful round of ACTH during her bout with Infantile Spasms when she was 6 months old. This is a heavy duty steroid that I had to inject in her thighs twice a day for a month-long course. She gained weight, was completely miserable, and didn’t smile for weeks. However, after she weaned, we had ourselves a happy baby with a “near normal” EEG. It worked and it worked for a long time (yes, a year is a long time in the Liss world).
2. Another oral steroid. Month-long course. Probably the same as above aside from the needle pricks and pain.
Let me add, Paige was a CHAMPION during her ACTH treatment!
3. Try another epilepsy drug on top of the one she takes twice a day to see if that helps. Most kids that I know with Liss are on more than one. Sometimes a handful or more.
4. Wait and see. Since her behavior and development is great, this sounds like a no brainer but there is a chance that the “scary” brain waves can mean trouble’s a-brewin’ and she can have a really BAD seizure and complications that follow.
I don’t even want to think about the complications that can follow.
I’m currently waiting for another neurologist in Pittsburgh to give their opinion as well as the previous doctor’s I mentioned in Boston. From there, Andrew and I will make the most educated decision for Paige and hope that it works. We’ve always told ourselves that we’re going for quality of life over quantity but it doesn’t make these decisions suck any less. We shall see.
Andrew and I are doing okay after the information we were given today. We’re happy that she’s so happy and there’s still a lot of facts and options that we need to acquire for her doctors. All we can do is consider this a plot twist in our lives and do what is best for our girl. We’ll definitely keep you updated!
On another note, we want to give a HUGE thanks from the bottom of our hearts to those who have supported our t-shirt fundraiser. We met and exceeded our goal in less than 24 hours.. 24 HOURS!!
The amount of support, well wishes, likes, shares, and donations brought me to tears and we’re so thankful! So, thank YOU! We can’t wait to rock our PAIGE PATROL t-shirts!