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Wegener's increase in children

Posted , 8 users are following.

marva06257
marva06257

Since my 9 year old son diagnosis 6 weeks ago, his rheumatologist has confirmed that she has had 3 other kids diagnosed with Wegener's, two teenage girls and one 10 year old boy. All in the past month after seeing my son.

All three kids presented the same way as my son, no other symptoms except pain in the chest, and positive ANCA test. No renal involvement.

What are the chances that the same Rheumatologist has had 4 kids in 6 weeks all diagnosed with Wegener's with no other confirm test except a positive ANCA.

We're all in the south Florida area.

Any thoughts???

1 like, 12 replies

12 Replies

  • Tr1957
    Tr1957 marva06257

    Posted

    I had a dr tell me he had seen lots of patients with wegeners ( pain specialist) i had my doubts since the rest of my drs(6) had only seen me being the first to a total of 6 in 30+ years of pratice at Yale. So when i saw his APRN at my next appt. she confided to me that i was the first patient with wegeners at there practice . So if i was you i would be highly skeptical without some proof especially since all present with the same symptoms- but the most important thing to be mindful of is how your child is treated and dont be afraid to question the treatment plan if it appears she is not being aggressive with her plan. You can also look up treatments at the Mayo clinic who are doing studies for the National Institue of Health(nih) and can speak to someone there also - good luck
    • marva06257
      marva06257 Tr1957

      Posted

      Yes I am very skeptical. My first thought was if Wegener's is so "rare" why suddenly, she went from not having any patients diagnosed with it to have 4 patients in a 6 weeks period. My second thought was, were they diagnosed correctly. Do my son and other 3 kids even have WG.

      I will definitely be contacting the Mayo clinic.

      Just to think this all started with chest/back pain a CT scan that confirmed nodules on the lungs.

  • misshigan
    misshigan marva06257

    Posted

    WG is such a rare disease, I would be skeptical. My one dr, in 30 years of practice, has only ever seen less than 20 patients with WG. However, I was diagnosed as a teen, and now I have an aunt with WG as well, and not one of the drs I've seen over the years have ever encountered this. We did not live in the same areas as I was growing up so environment was not a factor here. 

     

    • marva06257
      marva06257 misshigan

      Posted

      Thank you. I don't think its environmental either. I'm leaning more towards mis-diagnosed.
  • dog7
    dog7 marva06257

    Posted

    Sounds very odd to me. This is a rare disease affects 1 out of 30,000 - 50,000. So sorry to hear this. I was diagnosed in 2014 with Wegener's. I have relapsed due to an infection that wasnt going away. Off work again. Need to get treatment. Very scarry
  • MichaelsMom
    MichaelsMom marva06257

    Posted

    My 30 year old son diagnosed in may 2015. Neighbor directly behind us ( shared backyards) sick since June finally diagnosed in October.I believe it's environmental.
    • marva06257
      marva06257 MichaelsMom

      Posted

      I too believe the rise in diagnosis of "Wegener's " is either environmental or food related. When my 10 year old was diagnosed, 3 months later is pediatric rheumatologist had 3 additional cases of Wegener's in a 3 week period of time. All 4 kids exhibiting the same symptoms, went to the same ER, and live in the same county.
  • MichaelsMom
    MichaelsMom marva06257

    Posted

    I find this very worrying. A specialist would have done tests to confirm GPA before treating people for this ailment. The meds are so toxic. It sounds like the Doctor is a little surprised as well. An oncologist would not mention how many patients they were treating. I also have suspicions here. But after telling the Doctor I Don know what else to do.

    How is your child doing.

    • marva06257
      marva06257 MichaelsMom

      Posted

      He's doing great. His last round of bloodwork completed in December, his ANCA was negative, SED rate was normal, however his PR3 was still a little elevated. He has a follow up with in May, at which time they'll repeat labs and CT scan of his lungs(he has multiple nodules)
  • Susan_Nair
    Susan_Nair marva06257

    Posted

    I was diagnosed with Wegeners in 2013. Figured stress from.abusive family is a huge contributing factor. Also, read an article about a US woman whose infant got GPA after being inoculated against the HepA/B virus. She successfully sued the makers of the drug. I began having symptoms right after being inoculated with the Canadian version called Twinrix. Looked up if Twinrix had any related issues to Wegeners. SURE ENOUGH TWINRIX OWN REPORT ON DRUG STATES CAN CAUSE WEGENERS GRANULOMATOSIS WITH POLYANGIITIS! Prior to the diagnosis/Twinrix, I was otherwise the most healthiest patient my doctor had according to him. Anyone else receive this drug?
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