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My 9 year old was diagnosed with Wegener's a week ago. He started 8-27-15 with complaints of pain in his back. His pediatrician did an X-ray of his lungs and saw it was a cloudy. Pediatrician initially thought it was pneumonia but he had no symptoms of cough or fever. They thought it was s muscle strain. His pain continued went back to peditrician a week later, he was given medication/antibiotic for 10 days. After the 10 days, his pain now moved from his back to his chest. Used my good judgement and decided to take him to the ER and a children hospital. I demanded they perform a CT scan of his chest and blood work. CT scan revealed multiple pheriheral nodules on his lungs (5 in total). ER Doctor recommended Rheumatologist referral. Saw rheumatologist and pulmonologist les than a week later. Both worked together and did a serious of test. Last Saturday, received diagnosis of Wegener's granulomatosis. We caught it in time before it started affecting any major organs. I've read that it's less common in African Americans, which my son is. He started treatment, methotrexate and folic acid this past Friday. So far no major side effect. He did start wheezing a little today. He's now getting a breathing treatment.
There's not too many forum regarding kids being affected. I have so many questions??? Need help from someone who has experience this as a child or have a child who has experience this.
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