Turns out my feeling like I was coming down with something was the prelude to a week of migraines---they finally started easing off yesterday. Normally when I’m working if I’ve got a migraine I’ll send the kids off to day care (once I can drive safely) and spend as much of the day as possible in a dark room trying to sleep it off and downing ibuprofen/Tylenol/caffeine combos. With us still looking for respite, it was a painful week to say the least. Xian’s been having frequent bouts of screaming/crying---which might be connected to what’s going on for her hormonally, though a few have also been food related when she’s just over what she can tolerate for protein and she has a less dramatic episode. I’ll have to start recording her food intake again, as it seems that less food/protein is now provoking her episodes. She had a bad one yesterday—about twenty minutes of a milder one--- as an afternoon snack she’d had a tiny yoghurt sample in Safeway, a couple of small pieces of donut, and some fruit snacks (which have no protein). She’d recovered from that, but I made the mistake of giving her dinner soon after because she was hungry---not a big protein meal (some rice pasta with tomato sauce and a couple of slices of cucumber---maybe 4 grams of protein max. But it was enough to send her into a severe hallucinatory reaction. She yells “Make it stop! Make it stop!”, “Turn it off!” and “Too late! Too late!”, while she goes beet red, her heart pounds wildly, and she screams like nothing I’ve ever heard coming from a child. Whatever is going on seems to be pretty horrifying to her---while she fights and hits herself she yells for me to cuddle her, to hold on to her. I wish her doctors could all experience one of these events in person and have to try to deal with them---if I had other adults around I’d try to get her into Emergency while she was having one… there’s got to be something happening physiologically. The hardest part of going through these episodes with her is that it’s quite obvious she still believes that I can do something to stop whatever is going on.
Last week was a crappy week, generally---with what seem to be typical battles to get her clinic to act or even just call back. Xian’s endocrine levels came back normal, so no one bothered to call. According to an endocrine connection---a contact who is a senior pediatric endocrine doc, though unfortunately she’s across the country---‘normal’ levels are pretty typical for central precocious puberty—or, the form that comes from pituitary or hypothalamus issues. So, I call—and press the point that things are progressing, she’s five, and don’t we already have neuro issues pretty evident? (And if it was caused somehow by the medications they approved for her, shouldn’t they make certain of that?) A couple of days later one of the doctors calls back saying that they thought they figured they’d watch things for a couple of months before having her see endocrine. I pretty much lost it---I’m sure the migraine helped, but it felt like the straw that broke the camel’s back. Anyway, it sounds like the doctor (ours is on holiday) is now going to put in a referral---though I didn’t get any real timeline, of course. The doctor’s comment was, “Well, a lot has already been done.” My response was that no one’s solved the problem yet, and we are still not getting anything in the way of services, therapy or treatment. It seems that a lot of what I am hearing these days from Xian’s doctors sounds like they are covering themselves in the case that she takes a bad turn and I decide to get legal advice. Really, though, I’d simply appreciate more honesty and some acknowledgment of what we are all living with (and observing)---if they are out of options and her case is no longer a priority, then just tell me so I can take her elsewhere. If something about her symptoms is puzzling, then admit it instead of telling me that it couldn’t be happening in the way I say it does. With her food reactions, I’ve heard over and over again about how strange it is to suddenly have difficulty with proteins---been told that I can certainly feed her unlimited amounts---and we are yet to have a doctor make arrangements to actually observe what is going on. It seems that all of her doctors rely solely on her blood work and other tests---and if nothing shows up, then her case can’t really be that serious. (Unfortunately I know of several folks where negative test results occurred until they eventually had terminal or very serious illnesses diagnosed….).
So, feeling pretty frustrated. As I said to my mother when we spoke by phone the other day, maybe the bigger purpose of the last few weeks is to make me lose any sort of ambivalence I’ve had about going to the Mayo Clinic---as opposed to still hoping for something to become clearer to the doctors here. Our lives are in complete limbo---can’t even make kindergarten decisions for Xian, let alone figure out whether I will be able to return to work. With this hitting nine months since her symptoms first started, and five months since things got much, much worse, I am at that point of exhaustion where I know something’s going to give if our situation doesn’t change. While I’ve been very lucky so far not to come down with something, the week of the migraines showed me how tenuous things are for us.
On a brighter note---yesterday the weather was unbelievably warm, 25 celsius. Both kids rode their new bikes in the open garage (Xian doesn’t like being out on the sidewalk, but for some reason the garage is okay.) Since we’re a lot less able to get out, the bikes seemed like a good idea. Rachel is the kind of kid who I call the “off we go” girl, so I figured a ‘big girl bike’ might at least give her a chance to go back and forth down the sidewalk. I wasn’t sure what Xian’s response would be---in the past she was always keen to do anything involving physical activity and was always an extremely well coordinated ‘daredevil’ of a girl. Her illness has taken her abilities, confidence and even her interest in such things. She seemed to be pleased with the bike (I picked one decorated with Disney princesses, because of size, cost, and a left over birthday gift certificate for Toys R Us), and the first day Rachel and I got her to try to sit on it. Yesterday she managed some shaky pedaling but did seem to catch on after a bit and Rachel was thrilled to have some bike riding company. While it wasn’t exactly like the ‘old Xian’ would have done (she’d have been zooming off on the sidewalk and asking for us to go around the block as many times as she could), it did seem that some of her motor skills are returning a little. Her stamina is a lot less, though---after about ten minutes she wants to head indoors to lie on the couch. Still, at least it’s getting her out and a bit more active---given that she’s not getting any therapy of any sort (and not that anyone even has a plan for that to happen…).