My son's name is Lucas Grencer and he has Stills disease. He is 14 years old. I am writting this for him as he is too weak and sick right now to write after just being released from the hospital yesterday after his second severe flare-up.
There, they did bloodwork, and
said his wbc was at 27,000 and told me they thought he might have an infection
in the sac around the heart...pericarditis. He was admitted and starteted
on an i.v. of antibiotics. He was seen by all kinds of doctors, including
infectious disease, which was ruled out. After 5 days here at our local
hospital seeing him get gradually worse with the fevers, severe joint pain in
every joint, chills, more weight loss, we took him to Dupont Hospital for
Children in DE,
They first had to do a bone marrow biopsy to rule out leukemia as it is very dangerous to start steriod treatment if it had been. They started him on a i.v. drip of prednisone which had a remarkable effect. He left there a few days later taking 60 mg of prednisone and Ibiprophen for pain. He started seeing a doctor here, and was doing fine gradually being tapered down from the predisone and adding methotrexate and folic acid. He has gained 75 pounds in 5 months, and has had the terrible side effects of large purple stretch marks covering most of his body. He had just gotten down to 10 mg. of prednisone and 20 mgs of methotrexate, when he developed another terrible flare about a month ago.
In addition of his
Stills, he was diagnosed with hytertension when he was 12 years old, which has
been hard to control even with all the drugs he has been on for that over the
years because the prednisone tends to raise your blood pressure.
As his parents, we are still
very concerned about all the effects of these drugs over the course of his young
years. We realize that he needs the prednisone right now and the
methotexate, but hope new treatments will develope with less severe side
effects. He's been home schooled by the school he was to attend here in
September and had just gotten to start attending and trying to meet friends here
in this new area when this latest
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