10yr old daughter possibly has GPA

[grneyedgrl74]

HI everyone! My name is Elizabeth. My daughter is awaiting an appt with Seattle Children's ENT to get a biopsy and scan of her nose. She has had severe rashes with purpura and extreme swelling and pain in her joints. She has been seen in ER twice before getting a diagnosis of HSP. However, upon her symptoms of blood in her nose and mucus this was not typical of HSP nor was continual bouts of headaches so I did some further reading into HSP and other vasculitis disorders and came across Wegeners Granulomatosis. This appeared to be more along the lines of what my daughter is dealing with. So I took her back to the dr and discussed these symptoms again with her Nepherologist who also seemed to think they needed to look into something else and not HSP but she didn't say specifically what. I already know what the what is since doing my research. She is on weekly kidney testing due to her diagnosis with HSP and having protein in her urine and High inflammation markers. I am wondering if anyone out there has had similar events and if there are any parents with young children dealing with this here?

[whatthewhat]

Hey Elizabeth. You are not alone. Whether it turns out to be WG or not, I (and others) can walk with you through the diagnosis process - which is almost always the hardest part of the journey. I am sorry your daughter has been so ill. Seattle Children's is very good - I think Dr Emory left a great legacy there.

Our daughter was diagnosed in 2013 at the age of 14 in Los Angeles. Before being diagnosed with WG she was diagnosed with (in fairly quick succession) Juvenile Rheumatoid Arthritis, Hand Foot Mouth, and Henoch Schonlein Purpura.

I am an administrator of a secret (non-public access) Facebook group for parents of pediatric WG (about 30 or 40 families represented with children of a wide age span.) I will PM you my contact information. Hang in there. Big hugs. -wtw

[vdub]

Don't believe everything on the internet ref wegs. It can be bad, but not nearly as bad as some of the older reports indicate.

From what you have said, it doesn't sound like wegs to me. I would be very interested to know what the docs come up with. Please let us know when it is dx'ed. I hope its not wegs for someone so young.

[whatthewhat]

It sounds just like pediatric wegeners to me, actually. And I am very afraid it is going after her kidneys. Pediatric wegeners presents and progresses very differently than adult-onset Wegeners.

[Fifi]

I am so sorry your daughter is sick and so young to be going through this. As parents, you always want to protect your children. I just wish I could trade places with my adult daughter who has Wegs. Wishing your daughter can be properly diagnosed and treated.

[annekat]

Elizabeth, I am in Olympia. I'm glad you are in or near Seattle where there are more docs who know about Wegs, and to hear from whatthewhat that Seattle Children's has a good reputation. There is also a NW Washington Vasculitis group on Facebook, if you are into that at all, which hasn't been super active lately but if you ask a question, you will probably get responses. Vdub is right that there is extreme stuff about WG on the internet that can be weeded out, even some of the top hospital sites may have some outdated info. This forum is really the best place to get current and accurate info. Though we are not experts in the disease, we know who is and have lots of valuable experience to share. It is hard when docs are hesitant about sharing what they are suspecting, and I really hope you find out soon what is going on. It is sad to hear of someone so young with these issues, but we do have a few, and just noticed there is another new person here with a young son or daughter in this position, which I haven't checked out yet. Best of luck to your daughter and you, and let us know what happens.

[Alysia]

Elizabeth, I am so sorry for what you & your daughter are going through. I am glad that you are in contact with wtw. Once I see a post of a parent here, first thing that come to my mind is: wtw. And I breath better when I see that she is in charge ♡♡ We know couple of parents for young kids with wg on facebook. I think that we can say that they are getting good treatment and doing ok.
Sending prayers ♡♡♡

[Jaha]

Welcome to the forum, which is full of great info. I really hope that you daughter does not have this unpredictable disease. I wish you and her all the best. Please keep us inform on her condition, and take good care of her.