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9460910 tn?1404680302

9 year old with multiple symptoms

My issue is the fact that his Doctor has done all kinds of blood work to check for JM. He suspects JM because a lot of my son's symptoms mirror the symptoms of the Doctors own daughter, who died from JM. This all started after a tonsillectomy when he was 3 year old. He came to me and said " my heat beeps funny" we told his Pediatrician  and he was referred to a cardiologist. We began to notice the palpitations seemed to be accompanied a fever. She examined him and done a lot of test, and said his heart was fine, but his Blood pressure is high. She also stated that according to his records his BP had been running high for a while. He began passing out and becoming very fatigue around age 4 1/2, and the Cardiologist saw him again. She ordered a stress test and my son couldn't complete the test ( he got too tired ). the Cardiologist still insisted his heart was fine but it was abnormal for a child to get tired that fast. She later gave another stress test and he couldn't go as far as the previous test. She referred him to Neurologist, and they couldn't find anything. by age 7, along with the chest pains, heart palpitations, fatigue, and syncope, he began having extreme pain in his neck, arms, hands, back and legs, that were accompanied with migraines. By age 7 1/2 his joints began to swell, and looked red, and were hot to touch (at times). By age 8, he started having problems with chewing and swallowing food, because of pain ( this is also about the time the red rash began to appear on his cheeks). His frequent fevers have been present since we first noticed them, but his blood work is often, but not always, fine ( no abnormal WBC) We can't remember when we noticed, but his hands are always in a fist position, and he can't coordinate his fingers to tie his shoes. Attached is a picture of the rash on his face. Notice how it spreads from his jaw, across his cheeks, and up the bridge of his nose. it also has small bumps. It looks like my "lupus butterfly" I get. The doctors suspect I developed lupus while pregnant with my child.
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9460910 tn?1404680302
It wasn't until recently that we found this current doctor. He just happened to be working at the ER on one of our many visits. Although the ER doctors and Cardiologist all saw something that wasn't right, the actual problem was other doctors INCLUDING his previous 2 Pediatricians thought it was me babying him. One actually said to me " He's just not an athletic kid". Another said he'll grow out of it. Others said it was growing pains. It seemed like they didn't believe anything was wrong because the blood tests were okay. The day I took him to the ER and this new doctor walked in, My son's back muscles were bulging outward and was screaming in pain, and was unable to sit up on his own much less walk. I was at my wits end and had no clue if this doctor was going to do the same as the others. Soon as he walked into the room we were in, he said I know what this is. He told me about his daughter, and printed info about JM. Nearly everything I read described my son, except the gottren papules on the hands, calcinosis, and Heliotrope eyelids. It has only been a few months but getting in to see Rheumatologist is nearly impossible. I have to dive 6 hours away to get my son in to see a specialist at Vanderbuilt in Nashville TN. I live 50 miles north of Knoxville. But, we are willing to do anything we can. I'm scared to death that they will say that the test show nothing, and we are back were we started.
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134578 tn?1693250592
The thing that puzzles me is the idea that while they are taking forever to diagnose him, they could do an initial run of the pulsing meds that begin RA treatment and see if it helps.  I guess it could be argued that they want to be sure before inadvertently altering his symptoms, but it seems like they are taking an awfully long time.  Have you thought of asking for a referral to the Mayo Clinic?  I had a friend who did this for her liver issues.
Helpful - 0
9460910 tn?1404680302
We have an appointment at Vanderbuilt for a Rheumatologist on the 22nd of this month. I'm very scared and unsure what to expect. I was told they will need to do a muscle biopsy, but I worry about if the test says it's not? Back to the drawing board? Back to hearing these doctors say, it's anxiety? Or my personal favorite, " He's just not an athletic child"? The rash is also on his elbows and knees, and yes we had a Rx for cream, it did nothing.
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134578 tn?1693250592
It could be JM.  Have you ever done a home test by putting a steroid cream on the rash when it is present?  Not that this proves anything, but if the rash responds, that is another signal.

At what point will they determine it is time to stop testing and start to treat him?  It does not sound like at least the initial treatment for JM is damaging or dangerous.  If he were to respond, that would be another clue they have the diagnosis correct.
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