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Wegener's in children

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marva06257
marva06257

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.

0 likes, 7 replies

7 Replies

  • shannon86371
    shannon86371 marva06257

    Posted

    Hi there, my daughter was 14 when she was daignosed, she is going to be 16 in a couple of weeks, so I'm new to this illness, but happy to share experiences. I know I felt like I was grieving the loss of my healthy child for months, and now her anger at her lack exhaustion is displaying iteself in a change of attitude towards her education. It's a daily battle, one that you eventually learn to live with, I wouldn't say that I've come to terms with it yet, and it's scary when she gets so much as a mouth ulcer in case it's a flare up of the condition. If I could take the illness off her I would do so in a flash. Sadly she has lost quite a lot of her liver and kidney functuion, but looks totally normal so people assume that she is fine. Anyway, chin-up, I've learnt to count my blessings although it all seems unfair. Feel free to ask questions, I will try my best to answerr as many of them as I can, I'm sure others on here will be happy to help too.Shannon x

    • misshigan
      misshigan shannon86371

      Posted

      Hi there, I was a teen when I was diagnosed too. The changes in her moods could also just be teen angst, but could also be the meds. I was not provided the opportunity for any councelling once I left the hospital (was hospitalized for almost a year) and feel that this would have been very beneficial to me. My life choices may have been different. I chose to work a full time job (the money was good) rather than continue with a paid scholarship (felt it was a charity case). I lost the job shortly after and any opportunity to back to school. I was very athletic when I took ill and my whole life changed. I sure could have used someone to talk about this all. My family as very disfunctional and of no help to me during this time. I wish your daughter well and if she has any questions, I am here! 
  • jennifer25546
    jennifer25546 marva06257

    Posted

    I was 40 and diagnois with this. I feel my doctor has not a clue but I didn't know either. I feel I know more than my Dr. I just found out that I moved into a house with contaimated water by Duke Energy. Never been sick before. I feel if I had known about what was in water maybe a different diagnosis. Heavy metals in well water.
  • misshigan
    misshigan marva06257

    Posted

    I was 16 when I was diagnosed, 33 years ago. They didn't really know what Wegners was back then and I almost died as a result. They did diagnose me in time though, and even though I don't have much kidney or liver function, I have persevered and gone on to live a rather normal life. I have had some difficulties, tiredness and it was hard raising two kids on my own, have had 4 recurrences of the illness, and am currenlty going through treatment for a relapse after fighting 3 different types of cancer of the last 3 years, but all in all, I have come through it ok. I used to be quite athletic but due to the illness that is not so much the case anymore. Your son will do just fine, and as long as he is not having to take steroids, he will be better in no time at all! I find the side effects of the steroids almost worse than the illness. Any questions, ask away! 
    • marva06257
      marva06257 misshigan

      Posted

      Thanks you so much for your post and up your kind words. It's very scary being a mother and feeling so helpless. Do you know if you having Wegener's contributed to your cancer diagnosis? I pray the best for you.
    • misshigan
      misshigan marva06257

      Posted

      No, the wegeners itself does not contribute to being more susceptible to cancer. The many chemo treatments over the years definitely did play a part and I was also on hormone replacement therapy for many years. All my cancers were caught early as I am very body aware and early detection is key.
  • marva06257
    marva06257

    Posted

    as all been diagnosed with WG, and presented with no symptoms, except for chest pain,

    Is that odd or what? There has to be a correlation. We live in South Florida.

    Any thoughts???

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