*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Tuesday, November 23, 2010
Appointment and IV's today
We took a scenic route that was ABSOLUTELY BEAUTIFUL!!! It was such a wonderful drive... until the GPS screwed up and took us quite a ways past the hospital! Had we not gone past it we would have been almost 20 minutes early. However, we ended up being about 10 minutes late. Doh! We got into the Infusion Room right away, and they started working on her almost immediately. Of course, they weighed her first. This child weighed 36 lbs in 2007 before she got Pneumonia. That dropped her down to 29lbs. It took her until her last appointment with the old rheumy to finally hit 42 lbs. That was October 4. Today she weighed 62 lbs!!! All of that water weight from the Prednisone caused her veins to "hide". They had a heck of a time finding a good one. Four people came and looked at her arms. They tried her left first because it's usually the best option. Not today. They eventually moved to her right. There was digging in both arms simply because she's soooooooo swollen from the steroids. She's so uncomfortable.
She calmed down quickly after her meds were started, and the doctor came in fairly quickly as well. I was able to get a prescription for a wheelchair! I got a new permit for the handicap sticker, and copies of her labs and Pulminary testing results. The pulminary was disappointing. They really didn't get a good reading. That's ok. I had fun looking over her labs. When her pedi first ran the very first RF panel she was RF+. Apparently, not anymore. Her RNP, however... (RiboNuclear Protein, if I remember right). That's the marker test for Mixed Connective Tissue Disease. Strong positive is a range of >80+. Her reading? 240. WOW!!! I was very happy that the Lupus & Scleroderma tests were negative. MCTD is still Lupus by association, but at least it doesn't look like it will turn into full-blown Lupus. A Myositis panel was run, but the results weren't posted. However, other labs that show inflammation were whacked out. Her Aldolase was high (high range is >9.7- hers was 15.1). Her ALT was very high... 41 is high normal, hers was 77. RBC was high (not sure what that one is yet). Her ESR has gone down from a high 39 to an average 9. I find this all very interesting.
The best news of all is that we can start to decrease her Prednisone!!! At the same time we will increase her Methotrexate injections. Generally that helps to wean off of the steroids faster. After seeing the doctor (who was very impressed with how great she is doing!) she did well for quite some time, until it was just about time to go. They still had to try to draw blood, and they wanted a urine sample. She was ok with the blood, but she cried & cried about the urine sample. She doesn't get the rage from steroids like some kids do. Instead, she gets upset and teary-eyed. All in all it was a good day considering. Thank God we can start to decrease her steroids. Oh! And I met up with another FaceBook mom!!! I wish I didn't feel so horrible today, but at least we got to chat a little bit. I feel like I'm forgetting something, but I'm so tired I can't keep my eyes open. Happy Thanksgiving if I'm not back on before then! :)
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I want to give you a great piece of advise. From now on, ASK for a PEDIATRIC nurse or a ROLLING PARAMEDIC/nurse (guys who ride along in ambulances). I have crazy jumping veins and unless they are training a nurse, I ask for one of these two after the first or second miss. I can't afford for these folks to blow my veins. Too many surgeries and too many meds have made them jumpy as heck.ReplyDelete
I WANT TO HUG YOUR LITTLE PRINCESS!!! Poor kid. I know prednisone and I really don't like it at all. To me, it's just not acceptable we don't have more options.
You tell your baby girl I'm so daggone proud of her. She is a tough cookie!! Hugs... gentle ones for her, strong ones for you mom. Tammy