20 month old daughter has ANCA

[Carajo84]

My 20 month old child was diagnosed with ANCA this morning, anybody out there relate? Im so scared, my husband is scared....by the way, we are in Alaska

[mishb]

Oh my goodness Carajo, that is scary.

What symptoms has she been having to lead them to do an ANCA blood test (if you don't mind my asking) ?

The only one thing that I can definitely tell you is that children are very resilient little people and they respond extremely well to treatment.
We have had quite a few mothers with young children, on this forum, and I hope they come along shortly to put your mind at ease a little.

[annekat]

Welcome, Carajo. You don't say whether your daughter was diagnosed with Wegener's Granulomatosis, also known as GPA, or one of the other diseases that shows a level of ANCA, or certain types of antibodies, in the blood. In any case, it is scary. We have heard of some young children getting WG, but not usually that young. I think Michelle is right that children are resilient and able to fight things off, though if brought into remission with treatment, would still need to be monitored for life in case of possible flares or relapses. I understand your fear and you have my sympathy. It will of course be important that you have good doctors. I know there is a member named Tom in Alaska who may see this and who might be able to give you some support with local resources, although of course it is a big state. He flies to Seattle now for his main WG treatment, but that is his decision and may not be the only alternative. Your docs can also consult with known specialists for free who are listed here: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) , and maybe you can contact the VF itself through the site to try to get a recommendation for people experienced with children's cases. Just know that coming to the forum is a very good step toward figuring this all out, this is a very caring group of people and there is a wide range of experiences here with this complicated disease. Also know that many of us adults, with proper treatment, are doing very well, with greatly reduced levels of disease activity or in actual remission, and there is no reason to think the same won't be true of your daughter. Best wishes to you all.

[Carajo84]

She has been diagnosed with with Wegeners ANCA Antibody Vasculitis, we were medivaced to a hospital where she has been intubated & sedated because she was having trouble breathing. They are starting her on steroids & Rituximab. We think it started a year ago when she had a seizure due to anemia. I am going to buy a book today to educate myself. Any ideas? Thank you for the comments back

[morningsunshine]

She has been diagnosed with with Wegeners ANCA Antibody Vasculitis, we were medivaced to a hospital where she has been intubated & sedated because she was having trouble breathing. They are starting her on steroids & Rituximab. We think it started a year ago when she had a seizure due to anemia. I am going to buy a book today to educate myself. Any ideas? Thank you for the comments back

Hi Carajo, what you're going through sounds incredibly frightening. I'll keep your little one and your family in my thoughts.

I had a very positive experience with Rituximab and I hope that for her it's the same.

I was just diagnosed a few months ago, so I've been knee-deep in researching this disease, mainly over the internet. Some good starting places:
Vasculitis Foundation: Vasculitis Foundation (http://www.vasculitisfoundation.org/)
NIH: Granulomatosis With Polyangiitis (GPA) (http://www.niaid.nih.gov/topics/gpa/pages/default.aspx)

Here's a forum thread on resources: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/59-links-wegener-s-granulomatosis-resources.html

I haven't come across any good books on Wegener's that aren't personal narratives. Those are interesting reads as well, since this disease seems to manifest itself differently in different people (so far as I can tell).

[annekat]

I agree it would be find a good book on the subject that wasn't a personal narrative, though those might be interesting. I'm glad morningsunshine posted those links! And I still feel that this forum is about the best place to learn about this disease. You can search the archives for info on specific aspects of it, although it can be time consuming to find just the posts you are after.

[Alias]

Hi there, I am in Anchorage, but due to a problem with prompt access to treatment when I was first diagnosed, I have been traveling to Seattle for periodic follow up at Virginia Mason. It sounds like your daughter is getting prompt and aggressive treatment. As far as I know there are only two rheumatologists in Anchorage. If she needs follow up out of state it's possible your insurance would cover at least a portion of travel costs. If you'd like to provide more details on where your daughter is hospitalized etc., feel free to do that on the forum or you can use the option to private message me with questions or issues regarding treatment in Alaska. I don't know if a book is the quickest path to learning about this illness. Some basic information can be found on websites for the Vasculitis Foundation, Cleveland Clinic, Mayo Clinic... And as noted by others there is a lot of experience stored in the postings of this forum. Best wishes.


She has been diagnosed with with Wegeners ANCA Antibody Vasculitis, we were medivaced to a hospital where she has been intubated & sedated because she was having trouble breathing. They are starting her on steroids & Rituximab. We think it started a year ago when she had a seizure due to anemia. I am going to buy a book today to educate myself. Any ideas? Thank you for the comments back

[JeanMarie]

Carajo, love & prayers for you and your daughter. I hope treatment is successful & she recovers quickly. The Vasculitis Foundation has consultants who will speak to your doctors & can advise on treatment. Vasculitis Foundation (http://www.vasculitisfoundation.org/)

[Jaha]

Carajo,
I am very sorry that your little daughter is going thru this. I'm wishing her all the best with her treatments. My thoughts will be with her and all of you during these trying times. There is always someone online here to ask questions to or to just talk with about any issues that might arise. All the best to your little one.