So last Thursday (the 17th) my little Beauty had an EEG done. Long story short: the pediatrician thinks the night terrors she's been having the last 8 months may actually be mini-seizures. The EEG had to be done to confirm this. Now, let me just say, whether you have an autistic child or not, no kid wants 23 wires stuck to their head. However, autistic children REALLY don't like it. Beauty's always had a hypersensitivity issue when it comes to her head (brushing her hair in the morning - every morning- results in screaming), so you can just imagine how unhappy she was to have this procedure done.
The fun began the night before, where I had to put Beauty to bed two hours later than usual, then I had to wake her 2 hours earlier than normal the next morning, plus I was not allowed to give her any food. The medicine used to sedate her could cause nausea, so they didn't want her to eat. We arrived at Primary Children's Hospital near the University of Utah, entered the building, and Beauty immediately became extremely tense. By the time we got inside the room where the hospital bed was, she was already throwing herself on the floor and trying to escape. She continued screaming for a solid 15 minutes. The procedure was a sedated EEG, meaning that she'd drink medicine to help her fall asleep. In other words, it does not completely knock her out.
She drank the medicine with no problems and the nurse told us (me and my sister) it would take up to 20 minutes for full effect. Ten minutes later, Beauty started to feel funny, and it made her panic. She started whining and she didn't want me to approach her, which was very odd because she usually allows me to try and comfort her. Then she tried leaving the room, but since she couldn't open the door, she just stood against it. About 30 seconds later, she fell. It was as if she had no feet and she just went limp. After that, my sister and I, despite the fact that Beauty didn't want us touching her, grabbed her and held her down so she wouldn't fall and accidentally hurt herself. This caused her to scream and she continued screaming for the next 10 minutes. A few minutes later, she was out like a light, sleeping in the bed.
Everyone came in to start hooking her up for the EEG. The doctor was able to attach about half the wires to Beauty's head before she woke up. Can you imagine falling asleep and waking up to a room full of strangers and weird colored strings attached to your scalp??? Yeah, it's freaky, and she was totally freaked out. The thrashing began and continued for about 10 minutes before the nurse decided it was time to give her another dose of the "sleepy medicine." The next twenty minutes consisted of me, my sister, and her doctor trying to keep Beauty still so the rest of the wires could be put in place. Now, in case you don't know how the wires are stuck on, they use 2 different types of pastes that stick the wire on, and then they use cotton tape to keep it in place. Her hair was a total disaster.
When she finally fell asleep again, the actual exam began. She slept for an hour while the computer monitored her brain waves. When the exam was finished, the doctor came in and quickly removed the wires from Beauty's head. "Quickly" is a relative term, considering that it took some doing to remove the wires without yanking all her hair out. She managed to fall asleep again for another hour, so my sister and I just sat there, waiting for her to wake up. Once she did, we fed her, they discharged her, and I carried her to the car.
The "fun" continued that night when I had to give her a bath and wash her hair. You had to see what her hair looked like; it was like Johnny Depp in "Edward Scissorhands," 'cause her hair was sticking up and sideways and every other direction imaginable, not to mention it was extremely knotted. After three shampoos and a half hours worth of brushing (let's not forget the piercing screams that came out of my beautiful little girl - as if I were ripping her limbs off), her hair was finally back to normal.
It has been such a horrible last three months for Beauty. She got a foot infection, an upper respiratory infection, she had the EEG, and now she has an eye infection. How? Because some stupid idiot (excuse my verbiage) brought their kid to nursery with a drippy eye and they said, "It's ok, it's just allergies." About an hour after we got home, Beauty's eye was drippy, puffy and red. It's hard enough having to put a special antibiotic creme on her feet 3x's a day (she hates people touching her feet), but now I have to put antibiotic eyedrops in her eyes 3x's a day as well. She screams so much now that by the end of the day, I usually end up with a migraine. Thank goodness Awesome Husband has the week off, 'cause I wouldn't be able to put her eyedrops in unless he restrains her.
It's times like this that I have to work really hard to remember that this too shall pass! This is just a small, microscopic moment in our short lives that we need to get through (although it feels like forever). I'm not quite sure what else to say, except that no matter what happens, I love my little girl. I'd rather go through these things and have her in my life than not. My world just isn't complete without her.
EEG Results: The doctor finally called me back today (12/28). Beauty's EEG results are "inconclusive." First, he said the "Beta Waves" that were recorded were considered high, but that could be because of the sedation medicine. Sometimes, that particular medicine can cause the beta readings to come out higher than normal. Second, he said there were "sporatic brain waves." Basically, some brain waves were slightly high, but they were so spread apart that the doctor could not conclusively say they were seizures. She could be having seizures, but they're not strong enough and frequent enough to be called seizures. So, basically that leaves us back at square one.
The doctor asked me how Beauty has been sleeping recently, and I mentioned that ever since she's been on the antibiotic to clear up her foot infection, she's been sleeping just fine. SOOO..... I'm wondering if the reason she's been waking up so much the last 3 1/2 months is related to the foot infection, because it took us a long time to figure out she had an infection. She might've been waking up a lot just because her foot was bothering her. What's the next step? Nothing. We're not going to do any more tests if she's sleeping just fine now. If she does start waking up a lot again, the pediatrician will refer us to a neurologist. I pray she continues to sleep well, 'cause I don't want to put her (and myself) through any more tests!
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