Tuesday, March 30, 2010

Gabby's Health

The Overall Problem
How I came to realize this is a longer story, but watered down, I recently learned that Gabby had missed five weeks of school or more each year from fourth grade on. That's five years straight of being sick much more than the average child according to her guidance counselor, her pediatrician, and an immunologist. This year has been no different from any other and today, with a low grade (100.6) fever and exhaustion Gabby missed her 31st day of school. In school weeks, that's six weeks and a day.

Mono
Last year, Gabby had mono, but didn't recover like she should. That combined with lots of aches and pains led me to take her to my rheumatologist who found that she had a deficiency in her C4 level. Yep, that's right C4. With enough of it, maybe she could blow up stuff. No, not really. Anyway, a low C4 level combined with other things can mean certain rhematological diseases. Alone, it doesn't mean much, but it is linked to Lupus which the rhematologist is testing for every six months. Unfortunately, this didn't help explain why she couldn't shake mono like most people do. She did go back to school to take her finals, but continued to have symptoms on and off during the summer. If you're wondering, she does not have mono now. She's been tested.


The Immunologist
Both Gabby's pediatrician and rheumatologist recommended that Gabby needed to see an immunologist. Finding one that was recommended by either doctor was ridiculously difficult. First, the rheumatologist recommended two great immunologists. One I had met before through my mother. The other was equally as good according to the rheumy. I called each office on a Friday afternoon. Neither was open. One closed at 1pm, the other at 4pm. These guys keep better hours than bankers. When I finally did reach them on Monday I was told that they didn't take children and neither had any recommendations. I should have asked to talk to a nurse, but didn't. Probably should have. Since I was shot down there, I turned to the pediatrician's recommendation, the Children's Hospital in Rochester. I called their rheumatology/immunology department and got an answering machine the same Friday. They didn't call back until Tuesday and told me that they didn't have an immunologist. They send all of their patients to an immunologist in Buffalo.

Well, I wasn't excited about traveling over two hours away, but you do what you have to. So, I looked this doc up on the internet as I had the other doctors. He was not only a doctor, but also a researcher with about 150 published articles. Sounded great. So, I called and scheduled the first possible appointment, over three months later. Gabby's problem wasn't life threatening so we could wait. Plus this way at least one follow-up would happen in the summer. It wasn't all bad. Then I called our insurance company. You guessed it, this doctor was not covered under our insurance. Let's just say that the wind was nowhere near my sails. John and I discussed it and decided to keep the appointment, but to continue to look for another immunologist.

Frustrated by my internet search, I called Gabby's old allergist to see if he could recommend anyone. Might sound like a weird doctor to call, but you see, allergists are immunologists, but they specialize in allergies not in immunological diseases. (This is a fact that most people don't know including any of the nurses I asked to help) In making that call, I got luckier than I could imagine. Gabby's old allergist had hired a doctor who had studied and worked at Philadelphia's Children's Hospital with a specialty in chidren's immunology. The doctor called me back personally the next day and told me that he could do all the basic blood work and evaluate it here. If needed, he'd refer us on. We saw him the next day and he agreed that Gabby was getting sick much more than she should at this age. He gave us a lab slip and sent us on our way. I thought, "Finally, something that will be easy." Just a little blood work. How hard could that be. So, Gabby and I headed for the hospital.

The Problem With Bloodwork
If you're familiar with doing blood work, you know that you have to check in first. Usually the check-in person finds the test on their screen, clicks on it and you're on your way to the phlebotomist. In our case six out of the twelve tests weren't ones that the check-in person had on the computer. So, we went back to get Gabby's blood work done with six red question marks on the lab slip. It didn't get any better with the phlebotomists. They scurried around calling people and looking stuff up in books. We waited about twenty minutes only to find out that some of the tests had to be sent out the same day and the courier had already left for the last time that day. Grrr. We'd have to come back before noon the next day.

Giving Blood
Not wanting Gabby to miss any more school, we decided to get up early and be in Elmira by 6:45am so that we could be the first customers at the lab. This way Gabby could make it back to school before the first bell. We all got up around 5:30 so that we could be in the car by 6:10. We got some fast food breakfast and made it there in time. Yipee...except Gabby was sick, again. She was running a fever and looked like white as a ghost except for her cheeks which were quite pink. As usual though, she was a trooper, not complaining at all. They took eleven vials of blood and then Gabby looked at me and said, "I'm really really dizzy." The phlebotomist, a grandmother of someone who goes to Gabby's former gym, was suddenly extremely attentive asking Gabby if she wanted water, juice, or wanted to lay down. Gabby leaned back, closing her eyes and the grandma was all over her, "Don't close your eyes! You need to lay down in the next room." Gabby did lay down and felt...I was going to say much better, but that wasn't true. She felt like total crap, but was much less dizzy. Probably having blood drawn while your feeling really ill isn't a good combination, at least while you're sitting up.

What Now
While we wait, I research. Before we went to the hospital the second time, I typed Gabby's tests into Excel so that I could look them up later. Not surprising, all of the tests that the immunologist ran are tests looking for an immune deficiency. Through Twitter, I found a link to the Immune Deficiency Foundation which has a handbook on Primary Immunodeficiency Diseases. This handbook explains a lot. While I'm not sure that Gabby has a primary immonodeficiency, it sure sounds a lot like her. In the meantime, until we get the test results back (2 more weeks), it is very interesting reading. If all of her test results come back normal, I don't know what we're going to do. Until that, I'm just going to hope that they find something and that it is treatable. Gabby has been sick enough for ten kids her age.

Friday, March 19, 2010

I'm looking through the glass (Dado block),
Don't know how much time has passed,
Feels like forever
Watch out where the huskies go,
And don't you eat that yellow snow

Why do you build me up buttercup baby just to knock me down.

Us girls we are so magical,
Soft skin, red lips, so kissable.
Have you seen the well to do,
Up and down park avenue,