My 12 year old son

[Cherie762]

my litttle boy has complained of pain in the area of his diaphram and bladder off and on for the past two years, he has had thousand sof dollars of blood work an ultra sound and a mri all inconclusive. except he is allergic to mold

He also spen alot of time at Childrens Hospital in Detroit to get diagnosed with a rare leg aliment, he get nodules amd granulomas on or near the tibia, after 3 biopsys we found he has septal panniculitus. no know cause mo cure, wont thraten ;life or limb just very painful, he goes in and out of pain cycles.

Im wondering if the two are related I feel something is missing Im with him when he has these painful episodes of bladder area, often his hands and feet turn as cold as ice, he has no difficulty voiding. He is overweight due to steroids and not being able to be acive because of leg he cant play gym in school, ride a bike  etc;;;

I dont know where to turn to next, he saw a neurologist last year who said theres areas of concern , Im really concerned, I am a cna, Ive never heard of symptoms like this , it makes no sense, hes definatley not faking he somtimes spike s low grade fever during these episodes and his hear rate goes to 110 or 120

[Cherie762]

no he hasnt hes seen rheotologist, neurologist, reg ped. I strongly feel something is being missed, You thought make sense that would explain the icey cold hans and feet at times.  what type of doctor should I take him to for this I dont need referals, would it be a caridologist??  Your adive is more spot on than a year of bouncing between drs and biopsys I feel like my sons getting un necessary painful tests, yet we need a diagnosis, he cant even ride a bike , play rough like boys do ,   thanks so very much

[CalGal]

Cherie, has your son been checked for any forms of vasculitis? The inflammatory condition he has is, as you know, inflammation of the connective tissue that partitions the fatty layer under his skin. That connective tissue - the septae - are the specific tissues that the blood vessels and the nerves run through. They provide the 'highways' and the protection to get the neurovascular elements from one place to another. In some cases, the panniculitis can be due to vasculitis, and vasculitis can crop up in various areas of the body. Any possibility??????