The Details-Infantile Spasms, Treatment, and Coming Back

Ok, finally, a few details from last week. But first, a picture. Here's our sweet girl in her hospital bed. Poor baby!All hooked up for her EEG.
Like I said, we went up to UVA for an appointment on Monday. At that appointment, the neurologist said it looked like she was having Infantile Spasms (IS), but had to catch it on an EEG just to be sure. So, he wanted us to stay for an extended EEG (which I've been wanting for her anyway). We figured we might as well, so we stayed.

They quickly determined that she was indeed having IS. Even though the name sounds less "scary" than "Seizures", Infantile Spasms are actually very bad and very damaging. Waverly had gotten to where she was having them all the time, 6 or 7 episodes a day that lasted anywhere from 5-25 minutes. She'd have them every few seconds during the episode, meaning she was having as many as 100-200 at a time (each episode). Poor thing was worn out!

After confirming that she indeed was having the IS, we were given a few treatment options. After much research and prayer, we decided on one form to try. So she is now on corticosteriods (prednisalone) for 45 days. She started on a heavy dose, and will gradually decrease over those 45 days. In that time, we have to watch her closely for side effects. She may gain a lot of weight and be irritable. We also have to test her urine three times a week for glucose, do two stool samples a week, and check her blood pressure twice a week. Once a week she will get blood drawn to check her electrolytes. So, that means we have three extra doctor's appointments every week, from now till the middle of December. Plus we'll be heading up to UVA for several checkups, including another 4-hour EEG in 2-3 weeks.

It's all pretty overwhelming, to be honest, but we are really hopeful that we will get these IS kicked out for good. Since starting these IS three weeks ago, we have really seen how they've affected Waverly. She doesn't smile as much, sometimes not for days at a time (as I write, I can't remember the last time she smiled). She's not as talkative or interactive. It breaks our heart to see our little girl just "not there". We hope that as we get these seizures out that she'll return to us.

While in the hospital, she had a big seizure, that lasted for about 30 seconds and made her turn blue. She desatted to 44, so now we also have a pulse oximeter machine at home, along with oxygen, just in case. That was not an IS, but another type of seizure. Because of her condition, she will always battle seizures. It's just a matter of trying to keep them under control and at a minimum. However, since the IS are such a bad type of seizure, they want those eradicated completely.

This is a picture from the day they unhooked her EEG. We came home the next day. Since she had the leads on for so long, they left a few sores on her head. But they are healing up now.
Since coming home, these past two days have been much improved regarding how many seizures she's had. However, she remains pretty non-interactive still. Please pray that we get these IS kicked out completely, that we get the other seizures controlled, and that our little girl will "come back" to us very soon.