I have a story to tell of the last few days of caring for Lauren. However, the tale is so infuriating that I’m having a hard time making myself relive it. It has to do with the lack of empathy, respect, and basic intelligence of our medical community, as it pertains to the care of someone with severe developmental disabilities. Lauren is not feeling well. As I’ve mentioned, her seizures have increased. She has become increasingly irritable over the last couple of months and is having mood swings that are getting wider daily. She doesn’t want to eat. We’ve been messing around with her meds, decrease one, increase another, so that could be the cause of some of her issues. But in the last few days, she’s stopped eating altogether. She’s spiked a fever up to 101 a couple of times. She sometimes gags when she tries to eat and she’s been very tired. Something more than a med change is causing problems here.
Needless to say my nerves are frayed. I’m stressed. I’m really tired. I can’t figure this out. She’s fading on me and I need help. I need someone to help me ferret out what is wrong with her, help her feel better, get her stable, care that something is not right. Here is what happened when I reached out for help.
First step, I call the neurologist – he’s on vacation. I’m instructed to call her primary doctor and the covering neurologist will be told what’s going on. I call the primary, they tell me to call her neurologist. Greaaat! I really think I need to rule out an ear or throat infection and that she should at least be seen by her internist. Well, they have no appointments with her doctor and they offer me one with someone she’s never seen before. I explain the difficulty of the situation and that she really needs to see the doctor that’s familiar with her. They say they’ll let her doctor know in the morning. In the meantime, the covering neurologist’s nurse calls back to tell me that he says, “Those symptoms are typical of a child that age who has disabilities.” Are you kidding me? Fever, not eating, is typical???? Does he not think that I don’t know what is “typical” for this young woman that I’ve been caring for all of twenty-four years? I really hate being treated like an idiot – and I let the nurse know that. The next morning the primary doctor’s practice calls back to tell me that her doctor says that this isn’t a “phone thing” and that Lauren needs to be seen. Hellooo, isn’t that what I asked for the day before? But he doesn’t have time for her so “any of the other doctors are qualified to see her”. That’s not the point but no one seems to care.
So I take her in to see this doctor who’s never seen her before. The nurse wants to take her temperature orally. You’re kidding me right?. So....she doesn’t take it at all. The doctor comes in checks her ears and throat, and can’t find anything wrong. He prescribes an antibiotic. Why? “Just in case.” In case of what? Do I really need to add another variable. Now I’m supposed to force an antibiotic into her three times a day for a week, which could cause stomach upset (especially since she’s not eating) or various other problems, to cure some unknown, possible ailment. Well, I think we’ll wait a bit to go down that path. So, now we are back home. She ate some pudding at lunchtime, and she just drank a milkshake. On the downside, the fever is back. If she doesn’t improve by tomorrow, I’ll probably go get that antibiotic. I don’t know what else to do. Reaching out to our medical community resulted in no gain and just more stress.