Larissa was such a trooper. She got up at 2 am and stayed up until we got to the neurology clinic. She sat still while her head was wired and gladly laid down. The light was turned out and the technician told her to close her eyes and sleep. She was so exhausted that it didn't take long for her to fall asleep.
While I was sitting there watching all those lines going across the screen my biggest concern was that she wouldn't have one of her episodes. It is about like taking your car to the mechanic and it refuses to act up. I wanted her to have an episode so we could determine what is going on with her. Naturally the day before I had told the neurologist that if she sleeps, she will have an episode, I was hoping that I hadn't jinxed the testing.
For 10 minutes we sat and watched the lines go across the monitor. Then she did it, she cooperated. These episodes are actually scary to us, her jaw clinches and she sounds like she is struggling to breathe. She started doing her choking sounds and the lines on the screen went wild. The technician jumped up and tried to get her to sit up, to wake up. He eyes rolled back in her head and she continued to sound like she was choking. Finally, after an eternity (maybe 30 seconds) she coughed and came out of it. He asked her how old she was and she told him 4, then she went right back to sleep.
The technician told me that he had never seen anyone do that, he admitted that it scared him. He called the neurologists office and told them that he needed to come down and check the tape. The doctor was in a meeting and we were told that we would need to stay in the building until he could come and check out the tape.
The technician then ran a strobe test that didn't effect Larissa at all. He told me to wake her up and right when I put my hand on her stomach she had another episode, another one got taped in case the first one wasn't sufficient. She had two episodes in less then 30 minutes. These don't seem to bother her at all and she doesn't seem to realize that anything has happened.
We went to the waiting room to wait for the neurologist. I tried to stay awake and Larissa ran around like she just had a great nap. Two hours later her doctor came and checked out the tape. He came and talked to me. First off he said that she is in fact having seizures. He talked about seizures part way through our conversation and then switched over to using the word epilepsy. My baby has epilepsy. It just doesn't seem fair to her, she has struggled to overcome her early beginnings and now has something else to deal with. I am sure that she will do fine, not quite sure about myself yet. I don't think that I have time right now to fully process this. I need to do some research since this is new to me.
However, I am thankful too. Thankful that we have the medical care to quickly address the issue. On Monday I brought my concern to her primary physician, Wednesday she saw a neurologist and Thursday she had an EEG and a diagnosis with a prescription called in. How wonderful is that?
God bless you and that little angel!! I've been watching your last few posts and You have really given me strength... I have a 5m old foster/ adopt, baby girl that has a bobbeling head... It' really cute...but they Dr. thinks she ha Bobbel head doll syndrome and if will nee brain surgery to releve the pressure... any way ..Guess I neee to get that out. but you seem so calm that it is inspiring, so thank!
ReplyDeleteshantra
Nothing my momma can't handle ;)
ReplyDeleteEither you picked all the difficult kids in the world or you just got (un?)lucky. Thankfully we're all (mostly) good kids ;) Give Weesa kisses from me and David!
Can't wait to see you all soon!!
Ahhh, Tasha I would say lucky! You know you couldn't imagine our family without Weesie.
ReplyDeleteShantra, your foster child has a true gift....you, who can advocate for her. Thankfully, she is also in a country where she can get medical care.
I never realized that I seem calm, I guess that I just put one foot in front of the other and carry on. Sometimes that is all we parents can do.
amazing to get help that fast
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