My 16 year old daughter just diagnosed

[annied]

Hi,
My healthy, athletic, energetic 16 year old daughter was just diagnosed with Wegener's right before New Year's. She hadn't been feeling well all fall. I kept taking her to the pediatrician, and finally after a trip to the ER and many, many tests, she came up positive for Lyme Disease. She took the meds, and still wasn't feeling well. Finally, we took her into Boston where more tests showed "vascular inflamation". I actually had to pull her from her track meet and get her admitted to the hospital. We spent 5 days in the hospital getting a blood transfusion, 3 days of steroids, rituxamab, any cytoxin. What a whirlwind. She is back to school, running, dancing, and still getting daily steroids, and weekly infusions. I can only hope this was caught early and she will have total remission. I can't believe how things turn so quickly.

This forum has been so helpful to me. It is comforting knowing there are others going through the same thing. Thank you. Ann

[mishb]

Hi Ann and welcome.

I'm so glad you have been reading the posts and getting some helpful information about WG.
I'm really sorry that your daughter got this diagnosis but I'm glad that she got help quickly and is now back at school again.

With all of your reading on here, you will know that your daughters immune system is now very low.
She will need to take care when she is at school in regards to germs etc. and also when they do immunizations - no live vaccines.

Good luck to your daughter for continuing health and keep us updated with her progress.

[Dirty Don]

Welcome Ann, there are others on here in your same place and your daughter's. She/you are not alone. Please ask any and all questions as she progresses with the WG. Hate seeing young peeps with this, but they stand a better chance in so many respects than us oldies...hang tough. Best to you.

[Alysia]

Hi Anni, and welcome.
I am sorry for you and for your daughter. at least they found up relatively quick what it is.
your daughter sounds like s strong girl, and I believe that she can recover soon and have good and normal life of teenager. there are here more parents of teen. check around and find them.
good luck and continue to write.

[annekat]

Welcome, Ann, and I'm sorry you have a reason to have found us. I cannot imagine getting dx'ed with Wegener's at such a young age, in the prime of health and vitality. But it sounds like she is doing very well indeed if she is already back at school and running and dancing. I hope her progress continues and she goes into remission soon. It sounds like she stands a good chance of that. Keep us posted, we are interested and we care!

[annied]

Thanks everyone. This week we go overnight for Cytoxin. I am a little nervous about it. She did have a dose when she was hospitalized and did pretty well. Just afraid of infections, etc. She has a great attitude. She said to me yesterday, "Mom, it isn't so bad".

[pberggren1]

Ann, I take it the weekly infusions are Cytoxan(ctx)? Do you know the dose?

[annied]

I don't know. I will let you know Wednesday when she gets it.

[Lilly]

Hi Anne, I was diagnosed at 25, I am 48 now. I was treated immediately with predinosne, cytoxan and I think atiobiotics of some sort. But the cytoxan was given in pill form. I went into remission within a month, and was like your daughter....I was riding "stand up" jet skis, working full time, I felt like I was walking in "fast foward" because of the prednisoone!! I was on 80mg for a short time, then they began slowly taking me down. It was just fantastic to feel so WELL!! I am SO glad your daughter is back at school and getting back in the "swing of things". I noticed that after I was released from the hospital, the vasculitis caused temporary pain in the tips of my fingers, so when I buttoned my shirt or typed or wrote with a pen or pencil it was painful. Another thing I want to add. Have you talked to her doctor about the dosage of the cytoxan she is taking?And have they talked to you about how it effects her overies? The Cytoxan had a devestating effect on my ovaries, and your daughter being so young, I would hate that to happen to her. Her wellness and health is so much more important than being able to have children in the future, but it may be someting to ask her DR. They have come a long way since I was first treated, so JUST MAYBE they take that into consideration, because I was not given Rituxan when I was diagnosed, and so I assume I was on a higher dose of Cytoxan. I am so glad you are here, on the site. I have already learned so much, and the support is incredible! My mother has already talked to you about finding a place in Boston that could treat your Daughter. Thats how I learned about you. If you have any questions for me, please, no subject is off limits, Im an open book, so please feel free to ask me. Best of luck! Hugs and Prayers your way, and for your daughter.

[annied]

Hi Lilly,

Thanks for that! I am so happy to hear you have a full life and remain active. Yes, the doctors are all over the cytoxin and ovarian failure. There are a team of doctors and the disagreed on the cytoxin but ultimately decided that she should have 2 doses only. The second one is this week. She has also had Rituximab two times, as well as weekly IV steriods and daily steroids.

I am new to posting and am not sure if I got the message from your mom about treatment in Boston. I am very interested in that info. I am comfortable where we are (Tufts Floating hospital) but am considering getting another opinion at Mass General.

Lilly, what were your initial symptoms? Have you had a recurrence at all? Thanks for any info. I love to hear that you are doing so well. Ann

[renidrag]

Boston Medical Dr. Paul Monach and Mass General is Dr. John Stone
Dale

[Alysia]

Hi Ann,
why your daughter is not getting rtx (rituxan, rituximab, mabthera) instead of ctx ?

[annied]

My daughter has gotten rituximab twice and cytoxin once a few weeks ago, and will again this Wednesday. I have not heard of mabthera. She has pulse steroids every other week and takes prendisone daily.

[Lilly]

Hi Ann, I am glad the doctors are trying to keep her ovaries safe. I am also glad she is doing so well. I did well for many years, but I never went into a "true remission", I was treated with prednisone, cytoxan, and Bactrim DS (a new treatment for Wegeners pts who have severe lung infolvement) So I have been on the Bactrim DS for over 20 years, and have never had any problems being on the Bactrim all these years, and my lungs have been good. But any time I had a Flare Up, my Dr will control it with upping my prednisone, then weaning me off when my symptoms got better. It was working well. After 15 years of having the disease, time took its toll on my sinuses, and throat and my nose and eyes. I have had 2 total nose reconstructions because of "saddle nose", I have had several sinuses surgeries over the years, as the tumors that grow end up destroying the flesh in my nose. Honestly, It would take a book to tell all I have been through, but it happened slowly over time, and I was young and kept busy and in shape, and this helps the disease, I think, keep the flare ups down, and a good attitude, and just a positive attitude is good too. I admit this is a mean disease, and I am now on disability, and have a total knee replacemet because of wegeners. I went through menapause when I was 25 years old. I have osteoperosis, and other issues a person 20 years older than I have. I have had to slow down a lot. But this disease is different in every person, even though there are things that are the same, but i am so thankful that I have had the doctors that have treated me, and tried the new medications and treatments. I have had a very fufilled life. And I am still able to do a lot of things, but I have also been through some difficult times. My sinuses are basically gone now, I have glass tubes in the corners of my eyes to replace my tear ducts, that have been destroyed. I have crusting and scarring in my nose and throat, and my voice is very hoarse at nite. I have to irrigate my sinuses daily with medications to keep them from getting infected. The thing that most all of us "Weggies" have in common, is the fact that we are tired a lot, some from the disease, some from pain meds, some from both.......but we do not LOOK sick. People do not understand our disease. So they cannot identify! But websites like this really help you feel that you are not alone. So many people are worse than you, and some are not as bad as you....but we are all in the same boat! I hope and pray that your daughter gets even better treatment than some of us, because scientists and doctors are always finding things to help all diseases.....:) My mother found a website she thought you may be interested in.....Best hospitals for Wegener's Granulomatosis
(( wegenersdisease.org/Wegeners_hospitals.html))
Wegener's Disease doctors, ... Here you will find the Latest Wegener's Granulomatosis and vasculitis news and events. ...
Boston, Massachusetts. Doctor's:
I know this was a long response, and I was a bit all over the place. I am just tired right now, but PLEASE, If I didnt answer a question, or you have other things you would like to know, just ask me. Thats what Im here for. If you just need to VENT....because you are angry, upset or frustrated, I am here. I am also here to hear the GOOD things too. And I will share mine with you too! I hope we can keep in touch. I will be looking foward to see how your daughter is doing. Tell her to keep her head up, and if she gets depressed or upset, just chat with us! We have been there! Take care~ :)

[Alysia]

I have not heard of mabthera.
mabthera is another name for rituxan.

[whatthewhat]

Hi Ann,

I am so glad you have found this forum. It is so incredibly helpful, and the people are so wise, and warm!

The ped rheum team at Children's Hospital Los Angeles, who see more ped Wegener's than most anyone, are happy to consult on cases, if you ever want your team to have another opinion. Our daughter is treated at CHLA, and we have been very happy with their experience and expertise!

& I agree with the above (Pete? Or Don?): ped Wegener's is different in some ways including how kids heal more quickly! All the best to her, and you,
wtw