Gabrielle F. - Quilt Finished in 2008
Born: February 6, 1998
Illness: Behcet's Disease, Lupus, Sjorgren's Syndrome, Asthma
Gabrielle's Story
Written by Gabrielle's mom in May 2007
Gabby was a "normal" child until the age of 18 months. At that age she first started to develop these odd rashes & extremely (107+) high fevers. This was our 2nd child, so I knew what to expect and this wasn't it. The pediatrician kept saying she had a virus. Her fevers never completely broke. They would go down to 102 with Motrin & Tylenol-but were never 98.6. Gabby then developed enlarged lymph nodes in her neck as well as inflamed joints.
In 04/2000 she went into convulsions and quit breathing. We had administer CPR and call the paramedics. Her little lips were blue. After putting her on 10 lpm of oxygen and taking her to the hospital they came up with nothing other than "virus" again. She was living on Motrin and Tylenol. Her joints hurt so bad some morning she would literally crawl downstairs on her hands and knees. Her appetite was non-existent. She only wanted to drink milk. I could literally see her wasting away in front of my eyes, but nobody would listen.
I called CHIP and spoke with the attending ER physician who said to bring her in. They immediately admitted her and started to do a regiment of tests. Her SED rate was 161. After 4 days they came up with possible "cat scratch fever" put her on an antibiotic and sent her home; 6 days later they called me to say the culture was negative and they didn't know what was wrong with her. At the insistence of our family physicians PA he made an appointment for her with an out of town rheumatologist. When he saw her he thought she had "Still's Disease", which is a form of JRA.
After 18 months of receiving Enbrel injections 3x a week and a daily dose of Indomethacin, she still wasn't responding to treatment. Gabby was then referred to Hershey Medical Center to see their professor of pediatric rheumatology. Gabby improved with treatment over the course of 18 months from their specialist, but never fully to the point that the doctor was satisfied. Gabby was then referred to the director of the NIH (National Institute of Health) in Bethesda, MD. Gabby continues to be a patient there and visits several times a year.
In 06/2004 they diagnosed her with Behcet's Disease. She has had, and continues to have, GI problems, has endured endoscopes and colonoscopies; and has frequent bouts with GERD. She also experiences painful mouth ulcers and has had several genital ulcers as well. Gabby also takes 3 types of oral inhalers for her breathing and receives nebulizer treatments several times per day, as she has lost 21% of her lung capacity due to the disease.
During Gabby's visit to the NIH in December of 2004 they also diagnosed her with Lupus and Sjorgren's Syndrome. She has been tried on various different medications (oral, injectable, etc.) in hopes of stabilizing her. We thought they found the magical combination of 14 of them (which she currently takes twice daily-one being 1250 mg. of Cellcept) but recent blood tests have shown that her levels are rising where they shouldn't be and lowering where they aren't supposed to, so our magical prayed for concoction was short lived. She was recently started on Humira injections. We pray that they help since the next step is a monthly infusion of Remicaide. We have learned to treat her symptoms and help her through the day. Her next visit to the NIH is in 08/2007.
Gabby continues to be a vivacious, normal looking 9 yr old. Other than having to use a cane, on bad days, or a transport chair, when she has to endure longer distances, have regular blood work, tests, etc., you wouldn't know anything was wrong with her. This is "normal" for Gabby-she does not know any different type of life. It is day to day, sometimes minute to minute (as my husband says) living with Gabby. You never know what her condition will do, when it will flare. We just know we are blessed to have her for today.
