It all started the first week in March, 2011.
Kiera woke up sick, with what turned out to be Influenza B. She was very sleepy for 2 days and she had fever of about 103 for a day. On the third day she woke up feeling much better, so I told her to get up and get ready for school. She attempted to stand up, and let out a scream. Apparently her feet and legs were so tender to the touch that she could not stand, or even touch any part of her legs without a great deal of pain!
We took her up to Primary Children's Hospital where they found a very large amount of enzymes in her legs. I forget the name of the enzymes, but a normal number is around 100-200 and she had 4,000. So they gave her an IV to "flush" out the enzymes, and then sent us home.
She took a week to fully recover, and was back in school for about 2 weeks, when she got another small virus. This virus had the same effect on her as the first. We took her back up to Primary Children's, where they tested for the enzymes again, but found it was at a totally normal number.
We then went back and forth to Primary Children's Hospital 11 times over the next 3 months.
Test after test they ruled out a lot of serious things, along with anything else they could test for. They did a bone scan, MRI, CAT scan, & we spent part of a day in the neurology department getting a series of tests that were very hard to watch! Kiera was drugged, so she didn't feel it until later, when the medication wore off!
They ended up telling us they thought it was "Post infectious neuropothy".
Along with this odd pain in her legs she developed really severe head aches that would hit suddenly, and they were so bad it was completely debilitating! She couldn't sit up because it hurt her head, and made her dizzy. And when she had to use the bathroom she would sob as we carried her in, and sob as she sat on the potty with her head leaning on the counter for a place to rest her painful head, and she would scream and cry until a few minutes after she'd get situated in bed again.
Then, right as the school year ended she started to recover, and over the summer she made a full recovery. We spent time with her helping her learn to walk properly, and build up strength again.
Things seemed to be back to normal, but we were told at the hospital that due to the fact that her issue was mostly a mystery, that she could get hit with it again. Maybe with a specific virus, or any virus, nobody really knew. She had gotten sick once over the summer with no problems!
School started up again, and things were going great! Then about the 11th of October, just before bed she said her legs and feet hurt a bit. I disregarded it, and tucked her in.
The next morning she could not put pressure on her feet because of pain!
With our previous experience at Primary Children's we didn't take her to the hospital. We contacted the school district to ask them to borrow a child's wheel chair again, and also her pediatrician.
The pediatrician said that because she relapsed he thinks it will be something that reoccurs, so he wrote out a prescription for us to get her own wheel chair.
We have found a chair that fits her to well! It seems like it was built just for her. But the problem is insurance probably wont cover it because it isn't a "standard" wheel chair. Standard is the cheapest chair available, which also means its bigger, heavier, and clunkier!
The one we want to get her is light, small, she doesn't have to reach over the arm rests uncomfortably to push the wheels, and another big deal to her is it will fit under her desk at school.
Now we are just waiting to see if insurance will accept or reject it.
We are currently trying to find a way to build a wheel chair ramp up to our front door. Due to the amount of steps we have, and the requirements for the angle of the ramp it would cost $3,000. just in supplies!
We took Kiera in to see a new neurologist a couple weeks ago, he has been talking to other doctors at primary Children's to brainstorm and see what else can be done to find a diagnosis for Kiera. The doctor called and set us up an appointment with a rheumatology in a couple weeks at the University of Utah.
At this point its a waiting game. Her pain has been doing a roller coaster kind of ride. Good days, bad days, good days and it just keeps going.
At one point she was in SO much pain that she couldn't have the blankets on her bed touch her legs. She cried and cried! She wouldn't even adjust herself in bed because moving at all made her legs hurt. Mark and I sat next to her bed, holding her hand, singing to her trying to help her get to sleep!
No comments:
Post a Comment