She said that the doctors had ruled out liver failure...WHEW! But how ...what.... I asked her to start at the beginning a tell me what happened and why she was all wired up!
She began to explain that during a group jog she started feeling "bad" but kept pressing on. Then she felt light headed and fell down. She got back up. But then she fell again and every time she tried to get up- she "passed out". She said she could hear what people were saying sometimes and others she could not. So one of the other kids who was running in the group sought adult help who managed to get her to the Air Force Base Hospital.
The doctor on base had never seen anything like this and started some labs....her liver enzymes were out of whack and he "assumed" liver failure. (That is when I got the phone call.) The doctor knew that no local hospital could help her quickly and expertly enough so he med vac'd her an hour and a half away to Tallahassee which is where I saw her.
And as she had such a priority case, most of her labs etc. had been done by the time I got there....15 hours after she fell down!
But now we were facing an unknown condition. Why would someone just suddenly start "passing out"? And doing it EVERY single time she tried to stand up and walk?
She was fine while laying down- nothing and I mean nothing-abnormal showed up while she was laying down.....and how did this perfectly healthy kid go from outstanding at the beginning of a day- to out of it completely by the afternoon?
So more tests, and more tests were ordered....She saw neurologists, cardiologists, etc. No one had any answers....it was even proposed that she may be "acting" for attention. AHHH! And then came a test called the "tilt table". It is like a treadmill with wires and more wires etc. And it proved that she had something called... neurocardiogenic syncopy. This meant (in lay terms) that when she was laying down...her heart was high normal....but when her body was commanded to produce more (to stand up etc.) it actually did the opposite! So it was like she was passing out or going to sleep at the same time.
Following this test, the doctor explained to my husband and I the details of this latest medical challenge. I heard words that..... as a Mom I had heard before....no cures-some treatments seem to help a little...lifetime debilitating.....
I did not doubt that they found what they found. But because this started only weeks after she stopped growth hormone therapy....I was VERY suspicious that she needed to go back on it. But because she had gotten sick in France...and no medical articles documented anything like this....my thoughts were discounted.
And so we took her home and began a trial and error routine with a variety of med's to try and keep her "upright". She had to stop going to school and lost her scholarship to be an Air Force Pilot. It was so bad that I even had to help her to the bathroom! Most all of her friends went on with their lives but a few stayed in touch and gave her an emotional light which was beyond description.
This kid is amazing. She fought to have a good outlook on life. She put up with stares as we helped her get out into the world by going to the gas station with us. If she was strong enough to go into the store at the gas station...she would often have to lie down on the floor inside-to bring her heart rate back up....so that she could manage to walk back to the car! This caused quite a disturbance everywhere we went....but we did not care---I luckily had learned and passed along to my kids a lesson I wish more people would learn....Clean your house for your family/use manners with your loved ones....don't reserve the best of you for people you don't know and make no difference in your life....use the best for those who matter. So the stares of strangers did not matter very much!
For 2 years we struggled with the med's until finally finding an over the counter drug which kept her standing up for the most part. But it was very limited windows of time that this worked throughout each day. However, she was able to home school sort of and graduate and go on to college locally. Her younger sister was a HUGE help to all of us during this time. She drove her around- helped her get to classes when needed-and was a rock of support to her sister. For the first time-they were a team and not rivals. It was a great turning point in their relationship. (God always has a reason doesn't he? grin).