Marshall was first diagnosed when he was just 4 years old. He lost over 10% of his body weight in he first couple of weeks that he was ill. It seemed to level out after that.
His first symptoms were of an upper respiratory illness(URI) (only one of many.) All of them were attributed to the woodstove or the pets or the dust or the feather pillow. We did our best to reduce the allergens but since wood was our only source of heat there was nothing we could do about that.
As he was getting over the URI, he continued to refuse to eat or walk. It was at this time that I noticed that his knobby knees looked that way, not because of the weight loss but that they were swollen. He also had a pepper fine rash all over his trunk area. By the time we got to the hospital, the rash was nearly gone and the doctor insisted he couldn't see what remained. He also didn't think the swelling in his knees and elbows was significant. The scrotal swelling was noted but dismissed. (I later saw the notes so it was written down ... of course Mom (me) was blown off as an over protective hypochondriac).
Other symtoms included:
* swelling of the liver and spleen
* pain in all joints from shoulder down to fingertips and hips down to toes
* extremely high sed rate
Looking back we can see that his lack of interest in anything was fatigue. He slept a lot, but then he was only 4 and sick. You always let your sick baby sleep as long as he wants.
When they finally decided that they could see some of the things I could see, they began to do lab tests - urine, blood.
By now he had been ill and in pain for over 6 weeks with the only medication being the first course of antibiotic for the URI. They finally began a course of aspirin therapy and eventually he got better. (2 Baby aspirin at 12 and 6, one adult aspirin at 3 and 9. The goal was to get him to a blood level of 15) We were told then that it would probably never happen again. HA.
He went into remission and was relatively pain free for several years. Early morning aches and pains were a part of life for him and hot soaks in the tub were one way to deal with it.
He had a really bad attack following another URI just before he turned 13. We were told that this was probably triggered by a growth spurt.
He was hospitalized and treated with a nsaid the name of which escapes me at the moment. The releif was unbelievable. However, it was a drug that was supposed to be administered at strict intervals and the nurses did not follow the protocol and the doctor did not believe me when I told him that our son's ups and downs were due to this. (It was of course charted to look as if it had been given at the appropriate times. My notes on when it had actually been given were dismissed.)
Having since found out that it has some very serious side effects when used long term I wouldn't try it again anyway. This attack lasted for several months causing him to miss the entire quarter of school. His liver and spleen were swollen to the point that they could be seen protuding beneath his rib cage. All joints were effected. Extreme fatigue. He couldn't walk as his feet were so badly swollen. He also had vasculitis (inflammation of the circulatory systom)
We can tell when this is beginning because the rash on the backs of his arms turns a mottled purple. The only thing that brought him relief was to shake his head from side to side. He said that this made him dizzy and he could forget the pain for seconds at a time. Aspirin therapy again brought him into remission. 2 every 3 hours.
It was at this time that we discovered that there was a connection between his milk and chocolate allergies and the still's. If he has too much in the way of dairy products the rash on the backs of his arms will become extremely pronounced if he doesn't lay off the dairy products immediately the joint pain will begin. Once that happens, he is in for heavy aspirin again. Chocolate will do it too, but he has to be really pigging out.
His last attack was 3 years ago. This time there was no joint involvment but a lot of muscle pain, internal organ involvment, weight loss (over 40 lbs in 2 weeks) extreme fatigue. His first symptoms were pain in his back. We dismissed this as he had just put a dirt bike engine on to a riding lawn mower and was riding it in the woods. He had to push it home because it broke down. Then it started to rain. So it seemed logical. After a week of him complaining of the pain in his back and having noticed he was breathing in a very shallow manner. A little voice in my head kept saying he's having another attack. But there were none of the obvious symptoms. We finally got into the pediatrician's and he immediately order an MRI. This showed that there was fluid around his lung (the back pain) fluid buildup around his heart, in his liver, spleen and other internal organs. Back to the aspirin therapy.
He has been almost symptom free for 3 years. He still wakes up a little stiff in the morning (always has) but he is active and studying to be an auto mechanic. He intends to go to college next fall. If he stays away from real ice cream and sticks to the soy substitutes he is "OK". I do not think that is the entire problem but it aggravates it.
His 1/2 sister has some of the same symptoms that he has. Her doctors dismiss any possibility of there being any relationship between their symptoms. So meanwhile they continue to charge her for expensive tests. They have now eliminated Lyme disease and lupus. But are still insistent that it is NOT Still's as this is only a children's disease.
I am so glad to have found these pages about adult onset.
If there are any parents out there who want to discuss this, I am more than happy to share how we have dealt with all the issues ... education being a biggy. I now work in the school district and there is a little girl in my class with polyarticulate JRA.