We’re back at it! Back at Children’s Hospital, that is. To make sense of all of the reasons and terminology, I’m going to have to backtrack about a month to explain why we are here. It’s about a month’s worth of info so sorry if it’s long.
A month ago, when we found Paige’s diagnosis, we were told that Paige needed an Electroencephalography (EEG), to take a look at her brain activity, as soon as possible. The doctor said that we should expect it to be abnormal because patients with Liss are abnormal to begin with. Luckily, they had an opening and they would be able to do it in about an hour.
I remember thinking to myself, “It’s starting…”. The appointments, the testing, treatment plans, therapies, medications, everything. Everything was happening fast. Mind you, this was directly after we got news of how severe Paige’s diagnosis was and we barely had time to control our emotions and still trying to processing the news. Thankfully, Meredith is a fourth year medical student and was there to explain procedures to us because were not prepared for any of this.
An hour later, twenty-four electrodes were placed on Paige’s scalp using glue and blow-dried in place. Even though we knew she wasn’t hurt, it still was incredibly hard to watch her scream as the tech was putting them in place. It was noisy, sticky, and uncomfortable but the process didn’t seem too terribly long. When the lights dimmed, I stood next to Paige to keep her as still as I could. The next half hour was pretty quiet until the tech placed a bright light about a foot away from Paige’s face. The light blinked, Paige blinked, Andrew and I were like WHAT THE (INSERT ADULT LANGUAGE)?! Meredith informed us that he was trying to induce a seizure and, as you can imagine, more explicits were used.
The blinking lights were only a few minutes but they felt like it took forrr-eeev-errr. It was a lot for us to handle. Andrew had to leave the room and I had to look away. As far as we could tell, she wasn’t having one so we were able to talk ourselves down. Finally, the lights turned off and I think we all were able to breathe a little more. When the procedure was finished and Paige was cleaned up, we couldn’t get out of there fast enough.
Turns out, her brain activity was abnormal and since they couldn’t get a lot of information in an one hour, a longer 24 hour EEG was ordered. To make a long story (just a little bit) shorter, we checked into Children’s at 8am, went through the same drill as previously stated, and were on our way home at 6am the next day.
Due to a not-so-good night of sleep, the day was spent napping only to be waken up by a phone call from the neurologist…
“We think she’s having infantile spasms. You need to be admitted tomorrow to start a steroid treatment.”
So, back to the hospital we went and discussed treatment options. We decided to go with an injection steroid called ACTH because it had the highest success rate, least amount of side effects, and the shortest course. I don’t mind having to give injections and Paige was tolerating them really well. The only downside was that the medicine had to be shipped to my house, on ice, and they wouldn’t let us leave the hospital until they got confirmation it had arrived. With it being ordered on Friday, that meant we had to spend the weekend there so treatment wouldn’t be disrupted. The good news is that I got very comfortable with the injections and I actually felt more comfortable with the extra days of monitoring.
It’s been a little over 3 weeks since that hospital stay and we’re in the weaning process now. To start, it was two weeks of a high dosage of the steroid twice a day. This past week it was a lower dosage only in the morning and next week we stay at the same dosage but every other day.
The Epileptologist said (oh yes, Paige also has an Epilepsy diagnosis) that all infantile spasms should be controlled after the first couple of weeks so that’s why we’re here. Another 24 hour EEG and monitoring with a followup appointment right after. As much as we’d rather not have to be here, we must say that this hospital has taken very good care of us. Our room was set up to look very homey and there is someone in here almost every hour asking if we need anything. We appreciate it and feel she is in great hands. Of course, I’ve taken pictures to document the day…
Wires don’t stop Paige from tummy time!
The blinking strobe lights. Not as scary this time!
Wish us luck and cross your fingers for good news tomorrow!!