Dermatomyositis

On January 2nd Abby was diagnosed with Dermatomyositis. Is is an autoimmune disease that attacks the skin and the muscles. For several months Abby had been complaining about her legs hurting her. We dissmissed it at first as growing pains. We even took her to the doctor where she had x-rays and blood work done but everything came back normal. However things still just didn't seem right. She had a hard time walking up the stairs, could not sit cross legged on the ground, it was hard for her to put her shoes and socks on, and it got to the point where she pretty much refused to sit down on the floor because it hurt too much to get up. She also seemed to be losing strength in her arms. After another call to the doctor and another blood test done that looked at her muscles they found certain of her enzymes to be high. This, as well as a rash that had developed on her knees, hands, and elbows (a rash that I didn't even really notice - I thought they were scars on her knees and figured her hands were dry), pointed to dermatomyosits. This link tells more about the disease, explains all the medications that she is on (she takes 4 pills at breakfast and 7 at dinner), and the side effects of the medications.

http://www.cincinnatichildrens.org/health/info/rheumatology/diagnose/jdms.htm

We feel so blessed that our pediatrician, Dr. DaSilva, knew about this disease. We've heard of kids who've had to go through months and months of harsh testing in order to diagnose it. Dermatomyositis is rather rare, they say only 2 to 3 out of 1,000,000 kids are diagnosed with it, but Dr. DaSilva had had a childhood friend who had it and so she recognized the symtoms. Apparently autoimmune diseases can run in families. Tyler's sister has rheumatoid arthritis and Tyler suffers from ulcerative colitis both which are autoimmune diseases. They are triggered by a virus. Some other symptoms of dermatomyositis are complaints of tummy aches which Abby has been complaining about for over a year and a poor appetite. Abby was eating very little around Christmas time and was even choking occassionally on some of her food. Our pediatrician sent us to Pheonix Children's Hospital where they have one of the best pediatric rheumatologists in the country (another blessing). He admitted her to the hospital for 3 days to start her on a heavy dose of a steroid, Prednisone, that is supposed to help with the immflamation of the muscles and crank down the immune system so it will stop attacking the body.

Our baby girl at PCH

Abby and Daddy doing crafts

All her Get Well Balloons

Abby's Nurse Warren

Abby's IV and rash on her hands and knees


Ready to go home - Room 222B was where she stayed

Abby had fun while at the hospital ~ clowns came to see her, therapy dogs visited her and layed on her bed, she got to do art projects and play at the play room, and best of all watch continuos Disney Channel. She wasn't too excited about going back to school when she got home. Tyler stayed with her in the hospital as I couldn't be away from Ben that long and the boys were sick on and off that weekend.

We go to pysical therapy once a week. Abby loves going there. She's plays all kinds of games with her therapist Jessica and she doesn't even realize she's exercising. Abby takes her medication so well; no complaints at all and she is usually the one who reminds us that she needs to take them. The other day we were out of one of her meds (the pharmacy hadn't gotten it filled as soon as we'd hoped) and she said "Hey, where's my Prevacid?" It made me laugh, bittersweetly, that she knew which pill she was missing. One of her medications is given through a shot once a week and she doesn't like that one too much. Ok, she doesn't like it at all. She is so happy because this week she has an ear infection and can't have her shot because of the antibiotic. Ü

So brave!!

Another blessing, or tender mercy as people have referred to them, is that Abby's teacher has a special needs daughter. She takes some of the medicaitons that Abby takes so is aware of the side effects and is very sympathetic to Abby's needs. They have made accommodations for her at school ~ sits on a chair at rug time instead of on the floor, can sit out during PE if she needs too, can take the elevator if they need to go upstairs. Also my Uncle Paul is a dentist. One of his hygenists has a daughter with dermatomyositis. For how rare the disease is we think it is amazing that we've been able to find someone to talk to who has been through it all. Abby was able to meet her daughter and I think it was good for her to see that eventually this should all be ok and things will go back to normal. This is something that Abby will have her whole life but most kids go into remission and lead healthy active lives.
We returned to the rheumotologist on January 20th. Dr. Shishov said that Abby was moving better but not as well as she should have been for the doses of medication she was on. Also her rash was looking worse than it had originally. He wants to start her on an IVIG which as far as I understand it is a once a month day long IV treatment that pumps her full of antibodies. He said he usually doesn't start patients on this treatment until 2 or 3 months into it but he could tell Abby would need it eventually so we might as well go ahead. He wants to decrease her dose of the steriod as soon as possbile as it is a very harsh medication but can't do it until she starts showing major improvement. Most kids on it gain quite a bit of weight because they are constantly hungry. Water retention and swelling also contribute to the weight gain. Abby is starting to swell in her face a little bit. We are trying to control her appetite as best we can. Other side effects are stomach aches, brittle bones, mouth sores, eye problems; lots of fun stuff!!! And of course this IVIG has its own list of side effects. Our pediatrician said that sometimes you wonder what is worse - the disease or the side effects of the meds. However if she wasn't on the meds she would continue to get weaker and weaker which could lead to deformity and paralysis. We've heard that even homeopathic doctors say to stay on these medications as these are the best for them.
Abby improves daily. She goes up the stairs so much better now and is able to get up and down off the floor without needing to hold on to anything. That is so big!! When she was in California with my parents before Christmas she would drag a chair from the kitchen around so she wouldn't have to sit on the floor. The other day she just plopped right down. Abby is proud of her accomplishments. She is basically in a happy mood although she does complain of head aches and stomach aches almost daily. We haven't heard back from the rheumotologist yet as to when she will start her IVIG. It has to be approved by the insurance first. Sometimes I wonder if she even needs the IVIG. She has improved so much since she went to her appointment on the 20th. However yesterday we went to a birthday party. Andy and Alex jumped in the bounce house the whole 3 hours we were there. Abby jumpled about 2 minutes and had to stop because her legs hurt. Duck, duck, goose was hard for her to play. Her rash still isn't getting better. I guess we better do what the doctor says. Please remember our family in your prayers that Abby will continue to improve and that her doctors will know how best to treat her. This has opened our eyes to all the scary things that children can be afflicted with and we are so thankful that our trial is small compared to that of others.

On a much happier note Abby earned an award for being on the Principal's Honor Roll for the 2nd quarter at her school. She also came home on Friday and announced that she was Student of the Month in 1st grade for the month of January. Go Abby!