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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.

[lag713]

Welcome to the forum! I'm so sorry to hear about all the difficulty you have had getting your daughter a diagnosis and treatment. I can't imagine what you must be going through as her mother and caregiver. Hang in there and keep being informed. You are your daughter's best advocate!

I hope you find the right diagnosis soon and get the appropriate treatment right away.

[tjsheldon3]

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.

Yep, at children's of Milwaukee..they just started all her immunology testing. But I do feel each one of her drs is just grasping at straws. Always testing for something! The Wegener's makes so much sense and she fits the description. I did ask the nurse today about the ANCA test she had in November, it was p anca, it was positive 1:320

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[Dirty Don]

Docs' tendencies to grasp around is also a reflection of their protocols...WG is difficult to determine as it mimics many other symptomatic illnesses at different points. The docs seem to want to eliminate the others/more obvious ones first. Unless a dx is derived either by choice, opportunity, or necessity from a biopsy, preferably from a currently affected organ, usually the lungs, then it is very difficult to dx as shown by many low ANCA numbers, decent SED rates...yet, the WG was discovered. I was 'forced' into a lung biopsy and the WG was dxd in 2 days. Go slow, figure it out, but get the best answers from the best people available...no guessing, stalling, experimenting, reading from a book...best to you both.

[pberggren1]

You need to sit down with the main docs and have a talk with them, one on one, to find out what they think.

[Alysia]

Hi and welcome to the forum.
my heart is going out to you and to your daughter, having to deal with such tough issues, when she is still so young :crying:
as for the dx of IBS or IBD you can do calprotectin test, which is simple to take.
see this link: Faecal calprotectin - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Faecal_calprotectin)
I have colon involvement of wg so this test showed high positive for me.

as for group on fb: try this one: https://www.facebook.com/groups/332547823431093/
I found there those links, although I am not sure if they can help:
Nursing News Article | Childhood granulomatosis with polyangiitis: Standardized disease assessment in 6 Czech children |5182287 (http://www.mdlinx.com/nursing/news-article.cfm/5182287/0/polyangiitis/next/39/?source=scroller)

A10: Younger Age and Severity of Renal Presentation Distinguishes Microscopic Polyangiitis From Granulomatosis With Polyangiitis in Children: An ARChiVe Study - Bingham - 2014 - Arthritis & Rheumatology - Wiley Online Library (http://onlinelibrary.wiley.com/doi/10.1002/art.38421/abstract;jsessionid=856087864F059B5FDBD4B9A733CEDD 4F.f04t04?deniedAccessCustomisedMessage&userIsAut)

I think that Phil was relating to a girl we know on fb who is now 12yo but has WG long ago, this is her page: https://www.facebook.com/pages/WG-Warriors/309763245806009?ref=profile
hugs and prayers to you and to your daughter :hug1:
please update us.

[tjsheldon3]

Hi and welcome to the forum.
my heart is going out to you and to your daughter, having to deal with such tough issues, when she is still so young :crying:
as for the dx of IBS or IBD you can do calprotectin test, which is simple to take.
see this link: Faecal calprotectin - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Faecal_calprotectin)
I have colon involvement of wg so this test showed high positive for me.

as for group on fb: try this one: https://www.facebook.com/groups/332547823431093/
I found there those links, although I am not sure if they can help:
Nursing News Article | Childhood granulomatosis with polyangiitis: Standardized disease assessment in 6 Czech children |5182287 (http://www.mdlinx.com/nursing/news-article.cfm/5182287/0/polyangiitis/next/39/?source=scroller)

A10: Younger Age and Severity of Renal Presentation Distinguishes Microscopic Polyangiitis From Granulomatosis With Polyangiitis in Children: An ARChiVe Study - Bingham - 2014 - Arthritis & Rheumatology - Wiley Online Library (http://onlinelibrary.wiley.com/doi/10.1002/art.38421/abstract;jsessionid=856087864F059B5FDBD4B9A733CEDD 4F.f04t04?deniedAccessCustomisedMessage&userIsAut)

I think that Phil was relating to a girl we know on fb who is now 12yo but has WG long ago, this is her page: https://www.facebook.com/pages/WG-Warriors/309763245806009?ref=profile
hugs and prayers to you and to your daughter :hug1:
please update us.

Thank you for the info :)
We have done both calprotectin ad's lactoferrin, both normal. Rheumy did order repeats if her ANCA is positive again. Just received CPK and aldolayse, both normal. Acth test was normal, but...it's supposed to be done fasting, so Idk. Her ch50 was elevated. I've become a lab Nazi :)

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[tjsheldon3]

We do work with the main immunologist. Also the rheumatologist there as been helping. He's the one who suggested Wegener's. Our rheumy is closer, one hour away verses three. But may be needing to transfer all drs to one hospital, sick of all the run around and no communication :(

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[tjsheldon3]

Btw: what kind of Dr is used for vasculitis?

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[windchime]

Btw: what kind of Dr is used for vasculitis?

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Usually a Rheumatologist handles inflammatory diseases, of which vasculitis is one.

[Dirty Don]

Btw: what kind of Dr is used for vasculitis?

Usually a rheumatologist, but some use a nephrologist. Some have a PCP who consults with a vasculitis expert...who is generally a rheumy.

[drz]

What does the Find a Zebra website suggest as possible diagnoses for her symptoms? For many of us GPA came up first or second when we plugged in all our symptoms. GPA is often diagnosed it seems by excluding everything else that is more likely first and then confirmed by a biopsy of an affected part of the body.

[tjsheldon3]

What does the Find a Zebra website suggest as possible diagnoses for her symptoms? For many of us GPA came up first or second when we plugged in all our symptoms. GPA is often diagnosed it seems by excluding everything else that is more likely first and then confirmed by a biopsy of an affected part of the body.

Oh gosh, I'd never heard of that before. I just did it and number one and two is Wegener's :(

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[drz]

Oh gosh, I'd never heard of that before. I just did it and number one and two is Wegener's :(

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Ask your doctor what are thinking at this point. Do they agree it might be GPA?

[whatthewhat]

Hi tjsheldon. Thinking of you, wondering what is going on, and how she is...and just FYI, Dr Reiff &'the rheumatology team at Children's Hospital Los Angeles can consult on cases - they have a lot of pediatric wegeners patients, and can review the labs etc if your rheumy is willing to send them(which they should be...) just if you want a second opinion or other minds involved.