I have been trying to update from my cell phone, which limits me to something ridiculous like 1900 characters. That's, like, a paragraph. Not enough! Now I have found a community computer, but it's 1 A.M. and I should be in bed. Soooo, I will try to fill in what I can now, & try to finish up later.
It has been an exhausting, emotional week. Since I can't remember what the heck I have posted through the week thus far, I shall stick with the most pertinent. So, we get to the clinic and see the doctor. After just a few minutes she says that she would like to give her a Solu-Medrol IV and admit her so she can have 3 full doses. Due to the response being present but not as well as desired that 3 day dosing turned into 5. Honestly, I'm good with that. Here's why. After having the Solu-Medrol steroid Wednesday, Thursday & Friday and having Toradol (a very powerful anti-inflammatory) every six hours the whole time, Friday's MRI of her legs still showed muscle inflammation. What does that tell the doctors? Juvenile Dermatomyositis. Derma means skin, Myo= muscle, sitis= inflammation. JDM can be a severely disabling disease if left untreated. Already, my little one could barely walk. Thinking back, I'm pretty sure that she's had this at least since spring break last year. That is when she was stuck home on the couch for a week, then ok for a couple of weeks, then bad again. We were under the impression that her Enbrel was failing her. That's what I thought, her rheumy thought, and I thought she thought it, too. We uppded her dosing and things seemed to improve, but not enough. The JDM really reared its ugly head when we stopped the Enbrel and moved to Orencia. Apparently, JDM will respond to some TNF blockers. Orencia is not a TNF blocker, which is probably why it got worse when she switched.
The MRI was very necessary to diagnose, but it was terrible!!! It was supposed to happen Wednesday night or Thursday morning, so I started to prepare her for it. Usually she's ok as long as I explain things. Not this time! The more time that passed the more upset she got- and it didn't happen until around 3 P.M. on Friday!!! By that time she had decided that the MRI was going to kill her. She got all worked up. She kept repeating things like "I don't want to die!", "I want my Daddy!", etc... They had given her Atavan which seemed to decrease her movement but increase her anxieties. When she was finally done, having screamed through the entire thing, she didn't really stop for a while. They had tied her feet together, & she was sobbing "Oh, great. Now I can't walk!" Sooooooo horrible.
Pretty much her whole stay she has been on Toradol continuously, Salumedrol once daily, the IVIg yesterday, and she started Remicade this evening. I read up on IVIg. I don't currently have the site to link to, but that is AMAZING stuff! They take the antibodies out of the blood of 20,000 donors for each treatment. The thought is that it confuses the bodies of those that have autoimmune issues. Great stuff! Of course, introducing another new thing to a child that has had curve balls thrown at them constantly isn't the easiest thing to do. She freaked out about that, too. Really, she is sad, depressed, still feeling crappy, pumped full of steroids & other drugs, missing her family and bored to tears. Can I blame her? Absolutely not.
I learned something. Remember how I was sure that she had Lupus? Well, in a way she does. But only because the definition of Mixed Connective Tissue Disease is Lupus. She has no Lupus symptoms, so no technical Lupus. The other good side to that is when one has MCTD it means that (arthritis aside) one won't have any other one disease in the spectrum full-blown; there will be little bits of every disease represented. That helped to make it easier. Thank God we switched to here. They think like me, they both have little kids, they CARE!!! I'm so glad that we're here, already seeing a difference in my girl's hands and eyes, seeing her with a little energy today. We've been warned that we may have to school her at home for a while. We will see how she is when she gets home. I don't want to decide on anything until I see her away from here.
I know that she'll be going home on steroids. She will have at least a month, but that's because if there is active rash, there will be active JDM. The trick is to knock it back and then you have a shot of losing it completely. 1/3 of the cases lose it entirely. 1/3 have an on/off relationship forever, and the other 1/3 has more remission than flares. If I were at home I'd find the website & link it. I will try soon. It is extremely rare. In general for adult & pediatric cases only 1 out of 100,000 have JDM. Leave it to us! Anyway, back on the steroid note, her blood pressure has been high all day. I saw it at 148/100 but apparently it was even higher at one point, like 154/? The nurse that told me that didn't have the chart in her hands, but that's what she remembered. WOW. So, she's getting a dose of Lasix (not sure of the spelling). It's actually a diuretic used to help bring down blood pressure by helping the body to flush itself. Great idea! It's mild & natural. She's been crashed for a while. They give Tylenol, Benadryl, & Corticosteroid before the Remicade. Drugs to counter the drugs. What a sad life for my little baby :( I am confident that these docs will help her. And because of that, I am not a wreck. I was a total wreck the last ten days before I came here, knowing what needed to be done but not having a doc that would do anything about it. It's inaction that kills me. If we're working on it, I can be patient forever. To do nothing kills me! I have to have something in the works, be working towards fixing her or towards a goal. I can't let a problem grow and do nothing. She feels like a pin cushion, and she can't appreciate this right now, but I have faith that she will. Ok, I have to crash. Lord knows, I'm sure she'll be up peeing soon. I will try to update more tomorrow!
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