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 (http://www.vasculitisfoundation.org/wegenersgranulomatosis)

[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.

[Debbie C]

Ashley..I'm so sorry your little girl ended up with this horrible disease.But it sounds like you have some drs that are doing the right thing and hopefully she'll be feeling better very soon. Keep the faith.

[Palmyra]

Ashely,

Parental love is the strongest force I have ever experienced. Please keep us in touch, and I wish only for knowledge, strength and support for you and your dear family.

Best Regards,
Jane, mom to Alison, Crohn's'99, Wegerner's'06

[Natalie]

Hi Ashley , Glad you found this site Wishing you all the best for you and your daughter Praying she gets on the mend very very soon , Poor darling xx

[KimP]

Ashley my heart goes out to your daughter, you & your family. Watching my dad battle WG was difficult enough, I can't even begin to imagine trying to see my child battle the crap this disease can dish out... The stories people post on this site give hope though to everyone... Without it I'm not sure how I would cope...

Take care of yourself...

[mishb]

Hi Ashley, welcome to this site........ but what a dreadful way to have to find out about this forum.

Your daughter will be in our prayers and I hope she starts to improve over the next few weeks.

Keep strong and take care

[Jaha]

Ashley,
Welcome to the most informative site you will find on this disease. I can't even conseve that a little 3yr old would have to go thru such a terrible ordeal. It is very scary to have this dx, but try to get her to one of the major Weg's clinics and gather as much knowledge from all the people on this forum that you can. It will be hard to read some things, but at least you will have some people who understand and are wishing your daughter and family good results and well wishes.
Jana

[Psyborg]

Wow...I can't even imagine this at 3. I hope you are able to find some help here.

[Al]

Ashley my heart goes out to your daughter, you & your family. Watching my dad battle WG was difficult enough, I can't even begin to imagine trying to see my child battle the crap this disease can dish out... The stories people post on this site give hope though to everyone... Without it I'm not sure how I would cope...

Take care of yourself...I know you do not have a lot of personal time, Ashley, with all that you have going on. But Kim's advice to take care of yourself is correct, and valuable. With all those drains on your personal battery, you must take a little time to recharge. And stories are valuable. I suggest keeping a notebook by your bed. If you can't sleep, jot down your thoughts.

Al

[ashb17]

Hi everyone. Sorry I haven`t replied sooner my computer was down. I want to thank everyone for there response and support. My daughter is doing very well at the moment. Its been a couple weeks now since she has started her Imuran and she seems to be doing well on it. She hasn`t got a fever in about a week now and her upset tummy problems have almost stopped. Tomorrow she goes for a Ct scan of her chest to make sure her lungs are better now. I am really interested in reading other peoples experience with WG so if anyone has any suggestions I would appreciate it. Also I live in Canada , more specifically Manitoba and i don`t beleive there is a Wegener`s specialist here. She has a rheumatologist and a nephrologist looking after her. If anyone has any suggestions about good WG specialists in Canada that would be great. Her doctors have taken good care of her but I would really enjoy insight from a specialists. Thanks again everyone, I am very glad I found this forum!

[pberggren1]

I would contact Dr. Simon Carrett at Mount Sinai Hospital in Toronto. He is the BIG GUY in Canada so to speak. But with Wegs in young kids it is even more tricky to deal with. She will need a special pediatrition to deal with her case and probably many other docs as well.

[annekat]

Ashley, I'm glad to hear she is doing better. The archives for this forum are accessible by searching, using keywords, etc. It can take a bit of time, but there are lots of stories to read and information to be had. I imagine the doctor Phil mentioned above will know about any pediatricians and other doctors who have the right experience to take on your daughter as a patient. This is truly a special situation, and you do need to connect with a specialist who can give you some idea how to manage this long term. Best wishes to you, your daughter, and the rest of your family.

[Al]

In addition, Ashley, I recommend some counseling from a really good pediatric doctor who knows clinical psychology. Young patients, even if they can deal with all the medical treatments, are at high risk for severe emotional issues later on, due to the pain and invasive therapies that have been (in their view) forced upon them by powerful adults. That is, young kids do not fully understand their condition and what goes into the agonizing decisions made on their behalf, but they do fully comprehend constraints and apparently tortuous intimidation.

Al

[Sangye]

I would contact Dr. Simon Carrett at Mount Sinai Hospital in Toronto. He is the BIG GUY in Canada so to speak. But with Wegs in young kids it is even more tricky to deal with. She will need a special pediatrition to deal with her case and probably many other docs as well.
What Phil said.

[ashb17]

Thanks guys, i`m going to try and contact a specalist just in case there`s anything her docs are missing. I kind of feel like her rheumatologist is rushy. She`s in and out quite quickly and brushes some of my questions off. I also feel like it is because i`m a young mother (21) but hey it may just be how she is. Today Tiana went for her CT scan and they were so surprised at how well she did for a 3 year old. She held her breathe when she was suppose to and didn`t move. I couldn`t be more proud of her. Through everything she`s gone through she`s been amazing. She has more energy then some kids at daycare even through her chemo and pred (although she does nap alot lol) .. If i didn`t tell anyone she was sick I don`t think anyone would ever know! I truly do beleive she is a special little girl. ( She was born breach..she came out bum first (yes i pushed her out lol) so when she came out she was folded in half!(she apparently didn`t have enough room inside me) She had to wear a brace for the first 3 months to straighten them out as she had hip dysplasia.(lots of xrays) and little while later her doc thought she had pressure on her brain ( her head was above average and a little mishaped at the back with some dark veins under her eyes) that resulted in a helmet she had to wear for awhile. She had many star scans of her head and an mri and ct scan. After that stuff came the WG) It`s been a long road but she`s one amazing little girl and i wouldn`t trade her for the world. sorry for my rambling =)

[Palmyra]

No worries for rambling! Great thing about this site is one gets to ramble and tell all ones worries and woes. My own daughter was premature and had multiple issues at birth, but she's now 26.

It sounds as though you are very strong and navigating all of this really well. Best wishes to you and Tiana!

[drz]

Glad to hear from you. Some of us have been losing sleeping wondering about you and your daughter. We are very interested in you getting the best care you can for your daughter. You are in the cultural and medical center of Manitoba so there should be some excellent services available. As said earlier, delivery of the services for a three year old is probably as important as selection of services, so when possible opt for pediatric specialists who know how to work with children without causing unnecessary stress and trauma. Also push for them to consult with the GPA specialists listed in Canada and USA as needed to be sure she gets right services to treat her conditions. They can do that by phone, fax, and internet connections. They can send her case summary and ask for a consultation from the experts listed on the Vasculitis foundation. Your daughter sounds like a great girl who caught some very bad breaks so we are all hoping for a good recovery soon and better times ahead. Keep us posted.

[Al]

Exactly what drz sad.

Al

[Mel]

Hi Ashley,
I am so sorry to hear about your young daughter. From reading your story, you sound like an awesome mom and a strong woman. I am praying for your daughter and hope that she responds well to the treatment. I wish you all the best. I am from Toronto and can tell you that Dr. Carette and Dr. Pagnoux at the vasculitis clinic are the best! Try to get in to see them!
Best of luck!

[elephant]

Welcome Ashley, I am thinking about you and your daughter. I know your daughter will be in good hands, we have a bunch of wonderful people on this site with great information and experience in this. Keep us updated.