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[tjsheldon3]

Hi there, New here. In the process of trying to find out what is wrong with my six year old daughter.
Little background, she was diagnosed February 2012 with juvenile arthritis, and since then everything has gone down hill. My daughter since then, has been diagnosed with chronic sinusitis, uveitis, hashimoto thyroid disease, pre diabetic and undiagnosed GI issues. We are in the works, working with immunology of looking fur an immunodeficiency disorder. Her last IGG was low and also low B cells. She has also had the ANCA test done, and was positive. That test was just repeated again, how to get results within the week. She had her tonsils and adenoid removed, in hopes of stopping the chronic sinus issues and re current strep. They also did tubes in her ears due to hearing loss and inflammation. Although she has never been diagnosed with an ear infection in her life.
Her immunology team mentioned Wegener's, so I am doing all the research I can. The description fits my daughter like a glove! I am in hopes for any insight or anything else we should be testing for. Thank you so much for your help!

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[NikkiNicole]

All I can say is ... wow. I have a hard time dealing with what is going wrong with me and I am 34. I cannot imagine dealing with this at 6. I also have Hashimoto's on top of my Wegener's. It's the monster that bothers me because I can't lose weight! Blasted diseases.
I do hope they come to an answer soon. If you need anything ... we are all ears!!!

[Melly]

Oh my gosh, how horrible to have to deal with so much at such a young age. Do you know why they repeated the ANCA? Was it just to see if it had decreased/increased or did they think maybe it was a false-positive?

Autoimmune diseases can be hard to diagnose. I think your immunology team is on the right track. My best wishes to you and your family. I hope you find answers soon.

What are her GI symptoms, out of curiosity?

[pberggren1]

Sure sounds like it could be Wegs. If you are on facebook I know a couple other moms with young kids that have Wegs on there. There are also other Wegs and vasculitis groups on facebook as well. Where are you located?

[tjsheldon3]

Oh my gosh, how horrible to have to deal with so much at such a young age. Do you know why they repeated the ANCA? Was it just to see if it had decreased/increased or did they think maybe it was a false-positive?

Autoimmune diseases can be hard to diagnose. I think your immunology team is on the right track. My best wishes to you and your family. I hope you find answers soon.

What are her GI symptoms, out of curiosity?

I'm really not sure why they repeated. That test is what sent us to GI, they thought it was IBD. Her tier was like 3:20 I want to say. Symptoms were just stomach pain and constipation. They did colonoscopy and upper scope all came back good so they said IBS.

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[tjsheldon3]

Sure sounds like it could be Wegs. If you are on facebook I know a couple other moms with young kids that have Wegs on there. There are also other Wegs and vasculitis groups on facebook as well. Where are you located?

We are in Wisconsin. I've looked on Facebook, have only found a few groups, do you recommend any?

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[tjsheldon3]

I want to add they did allergy testing also, she has slight allergies, nothing that warrants daily medication. She takes nasonex, and they see trial using an inhaler. She was on so many antibiotics she got c diff. That was so scary. And because if all the sinus infections we've had to suspend her methotrexate until we figure this all out. It's frustrating. Her joints are horrible and her uveitis is flaring. We can't solely depend on steroid eye drops because her eye pressure increases

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[annekat]

Welcome to the forum. I hope your little girl doesn't have Wegener's, or anything equally as bad, but it is upsetting to read of someone so young with these problems. If she does have it, you are in the right place for support and information on the disease. Many of us have come a long way in getting this disease under control, and I don't think the chances would be any less for a 6 year old. She will be in my thoughts and prayers, and please keep us updated. We are here for you.

[windchime]

Welcome to the forum, I'm sorry to hear your little girl is having to deal with all this stuff that is difficult for us adults to deal with. Please check out the archives as there is much information there. I'm sure some of the other parents with children will chime in and give you the FB info. Sorry you have a reason to be here, but again welcome.

[pberggren1]

We are in Wisconsin. I've looked on Facebook, have only found a few groups, do you recommend any?

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There are a few that start with Wegeners on facebook. I would go with those. Are you at a teaching hospital? It seems to me the docs are not sure what she has.