Mom of 3 yr old daughter with WG

[ashb17]

Hey, My names ashley and have a 3 yr old daughter who was diagnosed with WG in October 2011. One night her urine was tea colored and thought maybe it was something she ate as it came outta no where. Next morning I wake her up for daycare. Her urine was still dark. So i took her to daycare and asked my auntie to keep an eye on her and would take her in when i was done school (lucky my auntie is the director of the daycare my daughter goes to) anyways i got a call from her saying tiana was acting very tired and just not herself so i left school and took her straight to childrens emergency. First they thought it was something like post strep infection but later ruled that out. Also thought kawasaki`s disease but ruled that out. A couple hrs after being in emergency she started to breath weird so they sent her for chest xray and found bleeding in her lungs. They couldn`t figure out what was wrong with her so they admitted her to childrens hospital. That night we were sleeping and i woke up to her crying `mommy help me`and she was covered in blood from the bleeding in her lungs. It was horrifying . They didn`t find out what was wrong with her till about the 10th day there after numerous blood tests, xrays, an mri and a kidney biopsy. After they confirmed WG they started her on her first treatment of cytoxan which she would go for once a month for 6 months. Well this month was her last treatment. (shes also on predinsone (down to 5 mg from 50mg) folic acid,septra,iron(done now),ranitidine, and enalapril-she has high blood pressure now to!) This past friday they started her on imuran and i have noticed that since she started it 3 days ago she`s spiked a fever everyday ...dont know if that is a side effect or not but that doctor doesnt think so) well that is my story kinda made short. i`m very glad i`ve found this site and think it`s going to help me deal with my feelings about WG as i don`t know anybody else who has gone through this.

[Lightwarrior]

I'm glad you found us. Do you have a weg's specialist? If not you should look on the vasculitis foundation web site there is lots of information and you should be able to find a specialist, they will even do free consults with your daughters doctors if you can not get to them. You will find lots of support on this forum. Here is the url Granulomatosis with Polyangiitis (Wegener's) (GPA) | Vasculitis Foundation

[blessed2bamommy]

Oh how hard things must be to have a child so very young with WG. My daughter with WG is 12 and I know how hard it is for her.

I have no advice or input as we are brand new to this (just got diagnosis in early Feb)

[drz]

I can't imagine how difficult it must be to see your young daughter afflicted with this horrible disease. Due to her tender age I would push for care or at least consultation with the best Weg pediatric clinic you can access. Some of the side effects of treatment are risky and dangerous to adults and I think there would be a lot more questions and uncertainty about how they affect a young child so try get some input from someone with experience and expertise in this area. This may be difficult to find since most people with this horrible disease are usually much older but some young teens have had parents on this forum who might offer some helpful insights and advice. Sorry you need to be here, but feel welcome to post any questions, rants, comments etc. Welcome.

[Al]

Oh, Ashley, this is an outrageously and unbearably cruel trick for nature to pull on a little girl. I heart goes out to you and her. It is also very surprising in many ways: It takes some time for a person's immune system to establish its full repertoire of responses; your daughter just has not been around so long. In any case, I agree that it is absolutely essential to involve a pedatric WG specialist. ou didn't say where you are located, but if it is not in a place where you can have a vasulitis specialist personal manage her treatment, at least have your doctor consult with the specialist (the service is free; consultants are listed on the Vasculitis Foundation website). I canot stress enough how important this is.

Please stay in touch with us; we will make this journey with you as best we can.

Al

[NicShaf]

I'm so sorry to hear you have to go through this with your daughter. You've come to a good place for information and support. I wish I had more to offer, but I know there are many here who are very knowledgeable. We'll all be thinking about you and your Daughter.

[annekat]

Ashley, it is just heartbreaking to hear about someone so young with Wegener's. I should think she is such a special case that the top Wegener's specialists would bend over backwards to help with her treatment. Best of luck to you and her in dealing with this, and please keep us posted as to her recovery.

[Sangye]

Hi Ashley, welcome. How heartbreaking to hear that someone so young has Wegs! The youngest I've heard of is 2 yrs old. Truly unimaginable.

I agree with the others that it's vital to get Wegs specialists involved. No one else will have the experience with Wegs to know how to treat a 3 yr old. Please continue posting and let us know how we can help you.

[mr.g]

Sorry about your little one...really sorry. This is a great place for you. I am also new to the group. The people on here can help you a little with all the worry but this group's big contribution is help with the "questions" and information about WG. It appears there is a never-ending list of questions about WG. You will wonder if "this or that" is part of WG. Ask and someone may be able to give you information and an answer that will help with the wondering about "this or that."

We are interested in each others progress. Keep us posted if you can without too much personel info on the internet.

Hang in there,
mr.g

[watersedge]

Hello Ashley, I could not believe my eyes when I saw your post. How truly unfair that a little girl so small should catch this disease and awful for her to have to go through all those tests and the biopsy on her kidneys, it must have been very frightening for her at such a young age and also how terrible for you. I just cannot even imagine what it must be like for you seeing your child sick. I am very sorry it had to happen to her and hope that with the care of good specialists she will be o.k.