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Hi. I am Jack's mom!
My son has been having problems since last summer. We didn't really notice anything odd the previous summer but we were also in a transition period with housing and spent a lot more time indoors. I can begin to pinpoint his problems as of last summer. I thought he was doing better but since it's Spring and he is outside more often I have noticed everything happening again.
Last year was aweful. It started in June - the 5th - we were on our way to the circus and i noticed he had a massive lump on the side of his head. It turned out to be a severely swollen lymph node. We went toi a few doctors and denied surgery because they had no idea what it was or what it was caused by. Our logic: Was it the cause of his sickness or a symptom? Until we knew - no one was cutting into him. They still don't know. The same node
(it is the worst, the others don't get as bad) swells predominantly during the warmth of the year, accompanied by fever, appetite loss, butterfly rash, rash on arms, lethargy, sensitivity to light and complaints of hurting all over - his hands and feet tend to be the worst. He was tested for everything under the sun (mono, etc) but they never mentioned anything about lupus.
It wasn't until a friend of mine in my CNA class was talking about her symptoms with lupus that I started to realize the similarities in their problems. So please don't think I just searched all over the internet until something fit- because believe me I did my searching but it was based on the one lymph node- and I never found anything. I am ok with admitting that even I was looking at it from the wrong direction.
We went fishing the other day, it was warm but not hot- it's northern MN... within a half hour he was sleeping on the floor of the boat, he woke up about a half hour later puking and his face was just red... despite the 50spf we use on him. He's been sick since.
I don't want it to get as bad as it did last year- there were times he cried all day about being in pain for no apparent reason. He would get such high fevers that I couldn't break them with ibu or tyl and at one point he blistered and ended up in the urgent care unit screaming about how everything hurt and he was borderline dillusional. He tends to have these bouts soon after an outdoor event or anything stressfull- like when we moved. All other mentioned symptoms also tend to coexist at the same time.
Anyway I know I am babbling a lot but I just want to know if I am nuts for thinking it could be lupus. I want to talk to the doctor about it but want to know what to ask. They don't really want to even see me anymore- they just keep telling me he is fine, but I know he isn't!
Can anyone give me advice on how to attack this? I already have lists with symptoms, whens and wheres and whatevers... I would like to compile a list of questions and recommended tests.
HELP ANYONE?
THANK YOU!
My son has been having problems since last summer. We didn't really notice anything odd the previous summer but we were also in a transition period with housing and spent a lot more time indoors. I can begin to pinpoint his problems as of last summer. I thought he was doing better but since it's Spring and he is outside more often I have noticed everything happening again.
Last year was aweful. It started in June - the 5th - we were on our way to the circus and i noticed he had a massive lump on the side of his head. It turned out to be a severely swollen lymph node. We went toi a few doctors and denied surgery because they had no idea what it was or what it was caused by. Our logic: Was it the cause of his sickness or a symptom? Until we knew - no one was cutting into him. They still don't know. The same node
(it is the worst, the others don't get as bad) swells predominantly during the warmth of the year, accompanied by fever, appetite loss, butterfly rash, rash on arms, lethargy, sensitivity to light and complaints of hurting all over - his hands and feet tend to be the worst. He was tested for everything under the sun (mono, etc) but they never mentioned anything about lupus.
It wasn't until a friend of mine in my CNA class was talking about her symptoms with lupus that I started to realize the similarities in their problems. So please don't think I just searched all over the internet until something fit- because believe me I did my searching but it was based on the one lymph node- and I never found anything. I am ok with admitting that even I was looking at it from the wrong direction.
We went fishing the other day, it was warm but not hot- it's northern MN... within a half hour he was sleeping on the floor of the boat, he woke up about a half hour later puking and his face was just red... despite the 50spf we use on him. He's been sick since.
I don't want it to get as bad as it did last year- there were times he cried all day about being in pain for no apparent reason. He would get such high fevers that I couldn't break them with ibu or tyl and at one point he blistered and ended up in the urgent care unit screaming about how everything hurt and he was borderline dillusional. He tends to have these bouts soon after an outdoor event or anything stressfull- like when we moved. All other mentioned symptoms also tend to coexist at the same time.
Anyway I know I am babbling a lot but I just want to know if I am nuts for thinking it could be lupus. I want to talk to the doctor about it but want to know what to ask. They don't really want to even see me anymore- they just keep telling me he is fine, but I know he isn't!
Can anyone give me advice on how to attack this? I already have lists with symptoms, whens and wheres and whatevers... I would like to compile a list of questions and recommended tests.
HELP ANYONE?
THANK YOU!