So you're reading about mitochondrial disease because when you were in Minneapolis last week you had an appointment with Genetics at Childrens and it's something they think is worth ruling out. At the time you were mildly excited, because SOMETHING WITH A NAME. You don't completely understand the intricacies of what mitochondrial disease might entail, but you remember that they are the furnace for your cells and give your body lots of energy and that's what your kid doesn't have, so it sort of lines up.
So that's why you're finally looking it up now that you're home in San Diego and there's still somehow an hour before you must pick your child up at school.
And what you're reading is at least mildly horrifying if not completely horrifying. You're asking yourself why you're so surprised to read about how systemic it is, because of course it is systemic, since there are mitochondria in every cell in your body… There is too much mention of heart failure, kidney failure, respiratory failure for your liking.
There are several (40? 50?) different flavors and varieties, and there are probably several hundred more that are less common. The symptoms and severity all vary, of course, depending on which part is broken. Several of them are named "Fatal infantile ______" and you think to yourself, well, hopefully those are off the list.
You know that depending on which part is broken, if there is a part broken, symptoms may not arise until she gets older. You were told by the geneticist to think about it this way: Lets say ten is the perfect number of mitochondria to have in a cell. If you have three that aren't working correctly, you may be asymptomatic until you're, say, 65. Obviously as we get older we have less energy and our systems aren't quite as efficient as they used to be. But if you have seven that aren't working correctly out of the ten, you may have symptoms much earlier.
A lot of the symptom cocktails include seizures. Comas. Dementia. Several mention short stature (whew, throw that one out). Of all things, the one that for God-knows what reason keeps poking at your brain is the gastrointestinal ones. You get asked about that one at every doctor's visit we go to. Is this why?
You stop reading because it's time to go pick your child up from school. What you've been reading certainly sucks a lot, but you have been trying to learn from your previous Anxiety Mistakes (and there have been several) over this four and a half year journey, and you know that it is too soon to make a call on anything. You have waited on pins and needles for genetic testing results back before, but at least they are not looking for ONE SPECIFIC TERRIBLE DEGENERATIVE THING that you obsess about for weeks. There are too many things here to make obsessing productive.
You go and pick your child up from school, and the second you walk in the door she immediately doubles over in pain and starts screaming about her stomach hurting. You know that she slept approximately ten minutes last night, and the teacher is telling you she was fine the entire day up until THIS VERY SECOND, so you're skeptical of this pain's realness.
But of course you've just spent the last hour reading about terrible conditions with gastrointestinal problems and now your kid is writhing on the floor in pain.
You sort of calm her down enough to get out of the classroom and you walk her over to another bathroom in the school, in case her classroom bathroom had been giving her anxiety. She tinkles but refuses to do anything else. She continually cries out in pain over what appear to be stabbing abdominal cramps. You are at a complete loss as to what to do, as she has never done this, ever. Also, MITOCHONDRIAL DISEASES OMG SHE MUST BE DYING.
You sit with her in the bathroom for a while longer, and you decide it's futile because she is not pooping or throwing up. You manage to interrogate the suspect (your child) enough to determine that she ate an unacceptable amount of Cheez-Its today while at school, and you think that this may be the cause of the distress. You decide to swing by the ol' nurse's office on your way out the door because, hey, why not. You find out that the nurse is gone for staff development, and the office secretary says something creepy about not wanting to be in the nurse's office anyway because, "they had a lot of blood."
You carry your kid to the car because the pain is apparently too much for her to walk, and she starts complaining about being dizzy. DEATH, IT IS COMING. You strap her into her car seat and decide to call her doctor's office because she is still doubling over in pain and yelling and screaming and you have no idea what to do, and sticking your fingers down her throat to make her throw up is probably not a CPS-approved option.
She is yelling so loudly that you must exit the vehicle in order to be able to talk with the doctor's office. As you're leaving your message for the physician something in the cosmos tells you to open the car door (don't worry, car and AC were both on) and your child announces they have just thrown up "everywhere." And as you walk around the car to open her door, you tell the nice woman on the phone that you believe your situation has resolved itself, thank you very much.
You have to believe that being strapped into a seat with a 5-point harness while throwing up is not the most ideal situation. In fact, you think it is pretty fucking disgusting. Luckily you have a towel in your car from running earlier today to help mop up the mess.
You repeatedly ask your child if she has to throw up again, because you'd rather not have her unload more into the car. There are several "no's" before you finally get a "yes." You unstrap her from her seat and stand her in the parking lot. She throws up twice more. You are not the LEAST bit surprised that it is mostly Cheez-Its. Your child announces to you that she is "never eating Cheez-Its ever again!"
You put her back in the car, soaking wet with vomit, and you drive home, taking the corners slowly as not to roil either of your stomachs.
She is pale, but back to her vociferous, stubborn self when you get home, so you think the worst is behind you.
As she orders you to PUT ARIEL ON, NOW, you reflect on how, for everyone's sake, you're glad Cheez-Its were not previously listed anywhere in the literature.
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