I always consoled myself about the pain and illness's that I was here to educate. I have more than several doctors go back to medical books to look up my maladies. I hope that I made these doctors aware so that the next person will get better care. I have even let a newbie draw my blood TWICE! The first time was in an ambulance, he ripped my vein opened and I watched blood spurt across the roof of the ambulance. The second time was at a hospital, she started to DIG for the vein. I just keep thinking, "better me than a child."
Although I console myself believing this, I also thought I had an agreement with the universe. I'll take all the pain, but not my children. Well Damn it, wouldn't you know, my daughter seems to be headed down the same path. (sigh) So I think, "I'm the one willing to go through all this, but not my child!" It's a good thing my version of God isn't a bearded man sitting up in the clouds, or I would spend an awful lot of time throwing rocks at clouds.
My daughter was early, born at 33 weeks, 40 is the height of full term. She was doing really well, had a little trouble eating on her own. But then again she got down to 3.8 lbs. Little thing. At 3 months old she got E-coli. We think it was a bladder infection (from a messy diaper) that turned into an infection in her blood, e-coli. We spent a week in the hospital. Then at about 8 months she had a clogged tear duct. It kept getting infected and her eye would swell shut. They went in and cleared her tear duct, basically punched a hole through to her nasal cavity. Then she was great. So no issues since then.
Last year she turned 5. She started vomiting in the middle of the night. We thought at first, it must be the pepperoni. She went through a phase where she loved pepperoni and couldn't get enough! The next time she hadn't had any pepperoni, but it was in the middle of the night and it was red. So I thought maybe she is allergic to red dye. We watched anything with red in it. Then it seemed to be every time some other kid was sick, in the middle of the night, she would start vomiting. We assumed it was every tiny bug and flu going around. Then we thought maybe it was allergies with all the mold and weed and tree crap floating around. But alas.... it was none of these.
She has a condition called CVS, Cyclic Vomiting Syndrome. One of her cycles was for five days in a row and that is when I started researching and decided there was a real issue here. I happened upon, "chronic vomiting in children," and CVS came up. It is fairly rare to be diagnosed, because just like us, everyone assumes they have a crappy immune system and write it off. It hits children between the ages of 5 and 7. I haven't read anything about their being a cure, but her doctor seems to think if we can give her this strong medicine for 3 months, we may be able to cure her.
Now this is the fun part, ready for it. She is in first grade. How stressful is public school? This is triggered by stress of any kind. Happy or sad. Getting a low grade, or Christmas morning. How exciting for my family. Besides the vomiting it also has a lovely symptom called "abdominal migraines." Yep, migraines of the stomach. A 300lb man punching my little 6 year old in the tummy.
Last night she had her worse AM so far. Last year, before the diagnosis, she would tell me her tummy hurt and I didn't believe her. She would tell me that she felt like she was going to throw up and I would send her to school anyway. Great Mom award on that one huh!? I thought she was just being manipulative. I'm not sure she still isn't using this as a manipulation tactic at times. I really want to teach her that she can't use this problem as an excuse to get out of every tiny thing. How do I do that though, without being a horrible mom. I mean what if I call her out for lying and she isn't.
The really bad AM I can tell, she lays on the floor and says, "mommy I can't take it!" The really weird thing about this condition though is that when she isn't having the migraine or actually vomiting, she is fine!
We just got referred to a specialist because her school suggest "home bound" schooling. This is going to be a fun adventure.
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