We’ve had a bit of a hellish time lately. And my blog has suffered.
The background: Kidlet has a wonky immune system, at times it tends to attack not infection but her body systems from within. Her thyroid is affected, as is the pigment in her skin. The fact that it all hit just at puberty did not help. It’s a lot to deal with sometimes, especially combined with ADHD and learning disabilities, and can cause emotional meltdown occasionally (above and beyond that of adolescence – fun, huh?). She’s on meds to try and keep things balanced. She has gone through various and sundry treatments, some of which require that she show up at the clinic 3 days a week, that she stay out of the sun, or avoid certain activities. She has not reacted in a good way to all the meds tried, and her health is monitored. We juggle visits to the pediatrician, the endocrinologist, the dermatologist, the psychologist, and a few other “-ist”s as well. She has missed a lot of school, and now struggles to try and catch up.
Well, this month, after she complained that the current meds didn’t seem to be helping, her doc decided to up the dosage of one of the pills she takes. And within a week her body reacted with a violent side effect. She lost control of the muscles in her body, and at the same time many muscles began cramping severely, causing her immense pain.
We didn’t know at first what was happening. One minute she was fine. The next minute she wasn’t. She was in the shower when her neck and shoulders cramped suddenly, her head snapped back, and she fell, hitting her head. She called to us, we managed to get her out of the shower, dried and dressed, all the while she couldn’t control her eyes, mouth, head, neck, arms, hands, fingers, all were contorted, her legs were shaking. When I held her and told her to look at me, at times she could move her eyes to mine, at times she couldn’t, it seemed to come in waves. We got her to the ER, where they took one look and ran for a gurney. Then began the waiting for a doctor, then tests, then waiting for the test results, then another doctor, then more tests. They put an IV in. They did a CAT scan (she couldn’t hold her head still for it, I had to hold her). At times she seemed out of it, then would come to and ask where she was and why was she there. But most of the time she was very aware. At one point she said “My brain is working, my body isn’t.” They moved her to another ward.
Long hours. Long hours for her, long hours when I worried and tried to bury my fears to soothe her. But the thoughts raced through my head. Was this a new reality for us, or something that would pass? Was there, G-d forbid, brain damage? Or something irreversible? I stayed by her side, while partner fussed over both of us, running for drinks, or food for me.
When they asked her to rank the pain from 1 to 10 and she immediately and firmly said “10”, they finally gave her something for the pain, and to relax the muscles which were still cramping violently. They set up a bed for her in the ward, and luckily in this hospital they provide parent beds beside the kids – a kind of armchair that opens out – so I could stay with her.
I can’t say I slept much. I did some knitting, which kept me calmer. But mostly I worried. Frankly, it pretty much terrified all of us.
During the day I went to the hospital shops, bought books for the kidlet, something for me. The reaction passed. Her control returned. We did her hair together, she wanted her makeup, she was back. So you can imagine how stunned we were when they insisted on giving her the same meds! They told us that the hospital staff couldn’t change an ongoing treatment, that was up to her regular doctor. As soon as she was released, we raced to her doc (even before we went home), who decided that she still needed these meds, so we would add another daily pill that would prevent the same side effect from occurring. The marvels of modern medicine!
We’re not happy about it. Since she’s been taking the new pill, she has been sleeping for stretches of 20 hours and more. And then she can’t get to sleep. It’s crazy. Relatively normal days are scattered among the days when she’s exhausted. The unbelievable occurred – she was too tired to go clothes shopping. Her doc has decided to reduce the dosage that was increased, but to keep the additional med. Yesterday she got home from school and was in bed by 4pm. And slept through until 6 this morning. Time for more consultations. Doc says we have to allow time for her system to adjust.
OK, I’m not a physician. I have to believe that these people do know what they’re doing. When I questioned treatments in the past, her main doctor got miffed and wanted to stop treating kidlet, claiming I “wasn’t cooperating”.
The dilemma for mothers has always been when to stop protecting so much, and give kids their independence, let them take the bumps and bruises that help them grow and mature. I don’t want to hover. But I don’t want kidlet to hurt. And then that all goes out the window when our kids are sick. I want to stay the magical Mommy who makes everything alright. But I can’t. I don’t have the specific expertise of the doctors who are trying to help her.
I don’t want to start a fuss now, because in a couple of months kidlet is moving to a new system, and will have a new doctor anyway. So I guess we’ll hang tight.
And hope we don’t have any more scares.