Make A Child Smile

Madeleine's Story
written by mom Connie

Madeleine was born December 2nd, 1999 with no complications. She was a happy and healthy baby and developed normally. From around the age of 3 to 5 she wanted to be carried more and more. Since she is petite and does not weigh much, we did not think anything of carrying her all the time. Slowly she stopped climbing and would not walk upstairs. Getting off the floor was a struggle. She was waking at night screaming from the pain in her legs. Our pediatrician checked her out and told us to see if it would go away - that it was probably just "normal" growing pains. When she finally developed a rash the nurse practitioner at our doctor's office researched for hours and finally hit on something. She ran more labs and in late February 2004, she was diagnosed with Juvenile Dermatomyositis (JDM).

JDM is a rare autoimmune disease that affects approximately 5,000 children in the United States. JDM attacks children of all ages, causing a variety of debilitating symptoms including: muscle weakness and pain, severe fatigue, rashes, swallowing and digestive difficulties, lung and heart problems, vasculitis ulcers, calcinosis and organ failure. Some children may experience a remission, while others will battle JDM their entire life, and complications from this disease can prove fatal. Medication can help to alleviate the symptoms of JDM, but there is currently no cure.

We started aggressive treatment immediately with large doses of IV steroids. Unfortunately getting the large doses of oral and IV steroids caused a great deal of damage to her body. Today we are working on reversing the damage from the drugs. She has severe osteoporosis and her GI tract was covered in ulcers. Because of all the steroids she has grown very little and in under the 10th percentile in height and weight. As we taper her off the steroids we are hopeful she will grow more.

In November 2005 we switched to doctors at Texas Children's Hospital in Houston, TX. They are working closely with a team of specialists locally to care for Madeleine. We are so lucky to have the best home health nurses in the business to take care of all her labs and IV treatments.

2006 was a very rocky year with her spending more time in the hospital with line infections and severe GI issues. Madeleine was on TPN from February to July and took almost nothing by mouth. She had bouts of severe nausea and vomiting and complained of a burning sensation in her throat. Even with all the reflux medications there was "burned and raw" areas in her larynx that the doctor saw when they went in with a scope. The decision was made to put in a g-button in July so we could get her off TPN. She has done great with it but cannot tolerate bolus feeding. We run her feeds mostly through the evenings and night time at a slow rate.

We went to Chicago to see Dr. Pachman at Children's Memorial Hospital. She is considered a JDM specialist and does a great deal of research on this disease. We had a very good meeting with her and she had us bring Madeleine back to their facility in early January 2007. They admitted her for some tests and for Dr. Pachman's colleagues to evaluate her. It was very productive and we all feel pretty good about Madeleine's chances of getting into remission. This is great because her disease has been active for far too long and I worry about the damage and scar tissue that will be left behind when she does get into remission.

Currently Madeleine is getting IV Methotrexate once a week - none of us look forward to this one! It makes her very anxious and crabby. She has a hard time sleeping from it and tends to be very emotional. Every two weeks she gets an infusion of high dose Solumderol and once a month she gets IVIG. Every four months she gets IV Pamidronate for her poor bone density. Her daily include: CellCept, Plaquenil, Prevacid, Zyrtec, Carafate, Folic acid, Leucovorin, and Naproxen.

Though all the diagnostic procedures and treatments we have never heard her ask "why did this happen to me?". She has accepted things and continues to dance her way through every day in spite of the pain. Taking her oral meds are the part she hated the most, now with her g-button we can just push them through it. Before that I would tell her it would be easier to give them to the cat than to her!

Madeleine is homeschooled, loves doing her worksheets and has learned to write in cursive. Since her hands still have some weakness she gets tired and sore easily. She still fights through it and has learned to write her name beautifully! Her constant companion is her poodle, Little Willie. We picked him out the day after she was diagnosed and he has been the perfect "baby" for her to love. Every night at bedtime her dad reads Harry Potter to her. He has read each one to her several times and she keeps asking for more.

She enjoys teasing her older brothers because she gets to stay home with mom while they go to school. They are good sports (most of the time!) and are patient to play Game Boy or board games with her. Because they are several years older than her, she learned to play PlayStation and Game Boy very early!

Thanks for checking in on our Madeleine!