Mary has been hurting in her left foot for a little while now. We have been trying to monitor it and see how it's progressing. Her big toe is swelling, turning red, and hurting. The pad of her same foot, the part up by her toes is also swelling, turning red and hurting, but it's also not wanting to bend. So essentially, her left foot is doing what her right wrist did when it was starting to lock up on her.
That's one problem...She came home from camp with a rash of white bumps and redness with some swelling all over her face. It moved down to her neck and began to hurt and itch. Then two days ago, her legs started getting shaky and weak. Enough so that she was really voicing an annoyance about it.
I took her to the doctor. We love our doctor. He's amazing. Unfortunately, everyone makes mistakes, even the most amazing doctor's in the world. I told him in that visit about all of this, including her sleeping troubles due to being in so much pain. I also told him about the Rheumy forgetting to send in her prescription for Prednisone. So he prescribed her Prednisone, Melatonin and Clonidine.
I asked if she could take all of this together, because that would put her on a slew of different medications. He assured me that it would be fine. Unfortunately, you just never think to ask a doctor, "Are you sure you have the dosages correct?" Because you instinctively trust them to know what they're prescribing is correct for their patient.
He gave Marian 20mg of Prednisone to be taken as 3 pills once a day for 5 days and then we were to taper her off for the next 6 days.
Last night, at bedtime, I gave Marian her Meloxicam, Leflunomide, Vit. C, Vit D, Ranitidine, and the new meds, Melatonin 5mg, Clonidine 0.1mg, and her 3 Prednisone pills 60mg. She went to sleep soon after (about an hour), and then continued to wake throughout the night after only being asleep about an hour, maybe a little more. She got up at 4am, and wasn't feeling well. She slept on and off all day long, barely eating or drinking anything.
I thought it was just because of the new sleeping meds, but she took those for an early bedtime last night at 6:30pm. And she took the same dose that Kat takes at 5 years old, and a 50lb. difference.
It still didn't hit me.
I had written a letter to her Rheumy about getting her in earlier than October 5. I was very detailed in my letter about what was going on with Mary and what meds she was on. I sent several letters after talking to one of the very rude schedulers, and finally this afternoon, a nurse from the Rheumy's office called me. She asked me how much Prednisone she was taking and was adamant about me getting the bottle and reading the dosage information to her verbatim. I did so and she took a deep breath and said, "DO NOT give her that dose of that medicine. Let me talk to the doctor and I will call you back."
A few hours went by, Mary was just feeling worse and worse, she was breaking down, crying, having fits, sleeping and waking and finally the nurse called back. She said, "She shouldn't take more than 20mg. We want her on 20mg, then 15, then 10, then 5." She didn't say that anything bad could happen to her from the dose she had already had, but then I don't remember telling her that I had already given it to her either. I know that her reaction was one of concern and urgency when she heard the dose she was supposed to take for 5 days.
I don't know if Dr. B messed up, if he wrote it wrong or if he went by her age and weight not thinking about her having an autoimmune disease? I don't know what happened, but she has been full body shaking for hours. She was having such awful fits earlier that I was actually wondering if she was possessed. She would laugh hysterically, then go right into sobbing, then she'd be screaming, climbing the walls and not wanting us to touch her.
I grabbed her and held her and she finally calmed down after a few minutes of sobbing. She took a hot bath and ate a little bit. Then she drank some ice water. All she kept saying during her fits was that she was so sleepy but her body wouldn't let her sleep (the steroid). After her bath she came out and made it only a few feet, as far as the recliner and fell out. I got her up and helped her to the couch, I picked her up, put her on the couch and covered her up. She watched a movie while falling in and out of sleep and now she's finally sound asleep on the couch. Hopefully for the night.
To say this has been one of the scariest experiences of my life would be an understatement. It was kind of like her night terrors when she was little, intensified by 1000.
I know I will be double checking doses from now on.
Her doctor (Rheumy) is now trying to get her in to her sooner than October. I guess we will see how that goes.
Please pray for Mary.
I babysat today. Mary slept with the baby during his nap.
But she didn't stop napping when the baby did. She was up and down all day. She fell asleep tonight wearing her Daddy's shirt, with an apple in her hand. :(
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