eglantine_br (eglantine_br) wrote,

Medical family stuff

Hi, guys. I am posting here about my real life, and my kid. It is under a cut because it is perhaps not for everyone. Although some part of me feels that there is no reason 

I had been trying for the past week to get a refill on daughters anti-seizure meds. Could not reach Dr. This happened 3 months ago too-- the last time we needed a refill. Last time I had to get a refill from the on-call who was a doctor I do not even know. 

We had not actually been to see the doctor for an appointment for about a year. At that time we had talked about changing daughters meds-- but it ended up not happening. Daughter had been very moody then, and we thought the pills might have been the cause-- but since then that had resolved.  So we were just cruising along on old meds. 

So, that is all backstory. 

Yesterday I still had not reached the doctor for the refill. I ended up leaving a message for the on-call, with answering service. I flagged it as an emergency, as daughter had missed a pill. (Usually, for my kid, missing one pill is not a biggie. The meds have a half-life such that she is still pretty safe.) 

So my girl had gone out to the mall with friends. 

Husband and I were getting ready to leave too. We needed to buy a sink pipe. The pipes here are so old that I had poked a hole in ours trying to de-clog it with a coathanger...

So, coat on ready to leave, phone rings. It is daughter's doctor. And she is very angry with me. She says that she had not seen us in a year, and that we had been in trouble with meds a year ago. I said yes, but things are better now. She said how was she to know that, and that she refuses to be the kind of doctor that just writes scripts and never sees us. I say that we appreciate that. She says she does not want our appreciation... Horrible horrible phone call.

Finally doctor, still seething, makes us appointment for this week. (Unheard of speed for seeing a peds neurologist.) She also says she will fill the script. Arrive at pharmacy. Nothing there from dr. Beg pills off the pharmacist to get us to appointment. 

Buy sink pipe. Husband and I are just starting to think about coffee. 

Phone rings-- daughters bff, calling from the back of an ambulance. Daughter has had a seizure and is being transported to a hosp in the ass-end of Staten Island. Really guys, they make 15 year old girls better than they used to. Poised, calm, kind, practical....

So husband and I get ourselves to the hospital, and spend the usual 5 hours or so sitting in the er. My girl is ok. It was not a bad one, but it leaves her sore and tired and confused. And she seems so sick and small in the hospital. They always want to test for underlying causes. I know it makes sense, but it takes so long. Daughter is rock-solid with needles. She has been since the age of two. She just sticks her arm out and they do whatever, her mouth does not even twitch. (That is a show-stopper in a toddler, believe me, but it broke my heart then, and it still does a bit.) In this case they took 5 vials of blood. 

It is dark and cold by the time we are released. Son had been dispatched home to walk dog. He had had to climb down the fire escapes on the outside of the building and in the window-- because he had forgotten his keys.

So I am feeling very stung, still over interaction with the doctor. My feelings are hurt. I hate having people mad at me. And i am sad for my girl. And husband is feeling helpless and angry because he can't make anything better. None of this brings out the best in him. Cab comes to pick us up. Cab costs a lot of money, but we need to get home.

Home now, and tired. Daughter is not sick. But now I feel that her pills are barely holding her. Any missed dose is going to have consequences. (Dear God, I hate consequences.) 

The thing about brain medications is: it is very hard to know what will make things better, what will make things worse, what will have side effects, what wont. And it is especially hard to know why. Nobody really knows why-- doctors don't. So if you find something that is sort of ok, you want to stick rather than gamble. Daughter knows this, and is resist to a new medication. I feel that way too. Scary. 

So, the upshot is, we go to see Dr on Thursday. We will have to tell her about the events in Staten Island. I am not looking forward to it.

Tags: childhood, real life
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