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talentx7
05-15-2010, 11:59 AM
Hello everyone,
I am in the hospital with my 8 year old son. We were admitted on Wed. night and he had a kidney biopsy yesterday. The dr. just came in and told us he had wegeners and would be giving him high doses of steroids and starting him on Chemo drugs. I am terrified. I have been on line looking up this disease and it is very scarry. Can anyone reassure me that you can live a "normal" life??? Thanks, Adrienne

Sangye
05-15-2010, 12:26 PM
and Hi Adrienne-- it's nice to meet you. Wow, 8 yrs old. That's just awful to hear. You're wise to do your research.

The most important thing is to get a Wegener's specialist involved ASAP. That's a rheumatologist who specialises in Wegs and who sees hundreds of Weggies. They are all involved in research. There aren't many of them in the world. Best is to have your son treated directly by one, which means traveling to a major vasculitis center (Mayo in Rochester, Cleveland Clinic, Johns Hopkins in Baltimore or Boston University). You can have them do the initial assessment and make a treatment plan for your local docs to carry through. You'd travel to see them a few times a year until he is stable, and then once or twice a year. They can discuss treatment on an ongoing basis with your local docs and you can also call them directly with your questions and concerns.

Second best is to have one of them consult with your docs. The Wegs specialists are VF consultants who do this for free. This is the MINIMUM you should do. The downside is that you don't have direct communication with them, which is a big deal as time goes by or if any complications occur. To do this, you would ask your doc to contact a VF consultant.

Wegs is a very scary disease. It's incredibly sneaky and is typically impossible for a regular rheumy to treat. It often presents with mysterious symptoms that fool even the experienced docs.

Having said that, many people do lead normal lives with Wegs. We have a lot of members who have kids and many who work outside the home. Some people do the initial course of treatment and don't have much trouble after and others have ongoing crises. Everything in-between. Some of our members have had Wegs for decades and have led fulfilling lives. Every person on here will agree that the number one most important factor is having a Wegs specialist. I've had docs who didn't know anything other than what they could read in a book, and docs who knew a fair amount. None compared to my Wegs doc. The others all nearly killed me and a great deal of damage occurred because of their lack of knowledge.

talentx7
05-15-2010, 12:48 PM
Thanks for your quick response. I am at UCLA in CA. I believe he is under the care of a weg. specialist, but i will ask. They seem to have alot of knowledge. My son has been to many dr.s in the past 2 years. Mostly for joint pain. He would wake up and not be able to move a joint, usually a hip or ankle. He had a septic hip surgery 2 years ago and are now being told that was not the correct diagnoises. (not something I wanted to hear). We accidentlly ran into a dr. almost a year ago who told us he suspected WG, but he wasn't showing any organ involvement, just a positive C ANCA. so we were hoping it wasn't. Everything came crashing down around us wed when they rushed us to UCLA with only 20% kidney function. So here we sit, terrified. They did tell me very few children have WG. I would have rather won the lotto :) Any info or help is greatly appriciated. Adrienne

Sangye
05-15-2010, 12:57 PM
It may be difficult to ask them, but you need to ask straight up "How many people with Wegs have you treated?" If it's less than hundreds, that's your sign that they don't know enough. Once the diagnosis is made and it's determined that the Weggie has highly active disease, the textbook treatment is high-dose pred and cytoxan. So they'll look like they know what to do since that's the typical protocol. But Wegs rarely likes to play by the book. And even if things go smoothly, non-Wegs docs don't know how and when to taper steroids or switch to another drug with the same skill as Wegs docs. They typically overtreat or undertreat. Both can have major consequences. My Wegs doc at JHU said "It's essential for everyone with Wegs to have a Wegs specialist."

I know many kids with rare cancers that have to travel cross-country to get the appropriate treatment. This is no different. I have to go to bed right now but will be back on in the morning.

talentx7
05-15-2010, 01:22 PM
Thank you, those are the exact meds he is being treated with. Sounds like Wegs is VERY difficult and that this will be a long road. How long does it normally take to go into "remission"?

DEE
05-15-2010, 02:29 PM
sorry to hear your news but your in the right place for help
this forum has helped me through some difficult times
im on cytoxan and pred and have started the road to remisssion and i find it is best not to think when
just deal with now you need your strength for that the when will come
you will probably be told about living life with a new normal at some point on here i did not understand at first but it is true
it will be clear in time as his treatment starts to work what this means
wishing you and your son a speedy road to recovery DEEx

elephant
05-15-2010, 08:06 PM
Dear Talentx7, I am sorry to hear that your son is sick at a such a young age. I too encourage you to see a Wegeners specialist soon, since he is so young you will want to go and see one. Once you get established you will be able to call the wegeners specialist and be on top of his care. I am 44 years old and I started to show symptoms at age 12 ( fever and joint pain, red eye's) and they diagnosed me with Juvenile Rheumatoid arthritis and gave me aspirin. Well I got worse at age 15, kidney failure with some function. At that time the doctors had no clue I had Wegeners disease...they thought it was a autoimmune disease like Lupus. Had a kidney transplant when I was 24, doing great with my kidney....but then I started to show symptoms of Wegeners and finally diagnosed in 2008. Wegener's disease attacked my kidneys, lungs eye, ears, sinuses..and now..have permanent damage from it.
Remission is different for everyone. When your treated with a Wegeners specialist ( I go to cleveland clinic in Ohio) his outcome will be better.
My story is long so what I wrote may seem choppy. I hope your son gets better soon.

Sangye
05-15-2010, 10:29 PM
Adrienne, there are no rules with Wegs, including getting to/maintaining remission. Some people do the initial typical protocol and go right into remission-- drug-free or drug-maintained. I don't know the statistics. A large percentage of people go into remission within a year, but the statistics don't say if it was drug-free or drug-maintained. About 50% will have a flare while in remission, which can be small or quite severe. Some people flare right away and others maintain remission for years. Some people take a long time getting to remission. I've never been in it for the 4 yrs since I was diagnosed. I'm hoping the new drug I'm on (rituximab) will get me there.

What remission looks like is also (sigh) highly variable. Some Weggies have no symptoms during remission and some continue to have a lot. This is where it gets tricky. A non-Wegs doc has a much harder time differentiating active disease versus damage from the disease/drugs. For example, profound fatigue is a common sign of active Wegs. But it also is caused by the drugs and/or the chronicity of autoimmune disease. Docs often either overtreat by assuming every symptom is active Wegs or undertreat by assuming everything is a side effect. With such a young child, it's even harder. Many Wegs symptoms are vague--not things that would be on a child's radar. We adults have a hard enough time. Many of our conversations on here center around "I'm not sure what's going on."

Dee is right about focusing on the present instead of remission. Keep reading, keep asking questions and get a Wegs doc. :)

JanW
05-15-2010, 10:52 PM
Hi, Adrienne -- I'm sorry you have to be here, but glad that you found us so quickly after diagnosis. Everyone else is right -- please make contact with a specialist. One other thing I wanted to mention -- the vasculitis foundation is hosting its conference in Long Beach this summer -- I am planning to go and maybe some others are here as well -- it's much closer to you of course. I have subglottic stenosis (scarring of the windpipe), a saddle nose (collasped bridge), and ankle pain and swelling. Like Sangye said many of us here work, live fulfilling lives, raise kids, etc. It's awful that your child had to get this so young (I have an 8 year old son as well, so I can't even imagine), but hopefully you will find all of the answers that you need and be on the road to recovery soon.

Col 23
05-16-2010, 01:11 AM
Hi Talentx7. I hope your son is feeling a little better. Sounds like he is in good hands. I agree with the rest of the group, learn as much as possible about Wegener's. I didnt even know how to spell it or had never heard of it in Dec 2009 when Diagnosed. Everyone's symptoms are different and varied and medications affect everyone in a variety of ways. Usually you can find someone on here that has experienced or heard of something that you may be experiencing. Being young and an early diagnoses is in your son's favour.
All the best
Col 23

Doug
05-16-2010, 10:36 AM
I don't think anyone has given you the link yet: Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)
You will find information on doctors and institutions specializing in WG treatment in this website. People who've made use of it note the docotrs are very helpful, will steer you to specialists or consult with your son's docotrs. It also give losts of information on WG, an excellant starting place to help you learn all the major questions to ask you doctors (though I see you've already been given excellent advice above!). Study it, arm yourself with facts about treatments and side effects (especially critical when a child is involved, and he's already had serious kidney involvement). God bless, and know that there are no stupid, silly, or embarrassing questions you can ask on this website.

Theresa
05-17-2010, 01:25 PM
Talentx7,
I was where you are just a few short weeks ago. My 14 year old son was diagnosed with WG at the end of March. We were so desperate for answers when we were at the hospital and before that also, but getting the diagnoses was very scary. He has responded really well to the cytoxan (chemo) and the prednisone. He is also on blood pressure pills, antibiotics and a few other things. He was back at school a couple of weeks after he started the meds and is MUCH improved from before we went to the hospital. We have a ways to go to get to remission but he is doing well. Leading a pretty regular lilfe. He will start a summer job assistant coaching a swim team in a few weeks.

Feel free to email me at [email protected] if you like. I'll be praying for your son and your family.
Theresa

Sangye
05-17-2010, 11:15 PM
Theresa, I'm so happy to hear how well your son is doing. It's wonderful to see you offering help to other moms whose kids have Wegs--much needed on our forum!

Have you made any progress in finding a Wegs specialist? This is a good time--when things are going well in treatment. Just thought I'd start my day with a good solid nag. :D

Theresa
05-18-2010, 03:51 AM
Sangye,
I appreciate the nagging. We are talking to Justin's Rheumatologist about this at our next appointment. I've been looking at the websites of the different Vasculitis Centers and all seem to need a Dr. recommendation.

Theresa

Sangye
05-18-2010, 05:40 AM
Yes, they require a dr recommendation and all the medical records. I don't know about other centers, but JHU usually takes about 6 weeks to get in once they get the records. They review them first before you can make an appt. I've seen them get someone in faster on occasion, if they need to be seen more urgently.

elephant
05-18-2010, 08:00 AM
When I made the appointment to Cleveland Clinic, I go in pretty fast. I think it was two weeks, I was not bad off. I think it depends....

jeriorleans
05-19-2010, 12:42 PM
My son was diagnosed in September at age 13. I also was scared to death, and to be honest, still am. Every little cold makes me stay up at night to make sure he is breathing. Pediatric rheumotologist are hard to find and adult rheumotologist will not treat children. We go from New Orleans to Atlanta, the Emory Clinic. The medicine is a nightmare. My good natured kid had a hard time with it. It does get better and he will start doing a lot better, but it doesn't get any less scary. Also, the steriods cause weight gain, adding insult to injury because other children can be so cruel. Talk to all of his teachers, let them know what is going on. When he doesnt' feel well, keep him home from school. Worry about now, not the future. My son just completed the 8th grade and missed over 60 days but he passed, but I wouldn't have cared if he didn't.

talentx7
05-20-2010, 02:32 AM
I am trying to find out if my sons dr. is a weg. specialist. I know she is a ped. rhematologist that has treated and has current children with WG under her care. Does anyone know if there is a Pediatric Weg specialist and is there a list somewhere?? Google doesn"t seem to have an answer..LOL.

elephant
05-20-2010, 03:56 AM
I am wondering if any of the Wegener's specialist would take care of your son? Try calling the Cleveland clinic in Ohio ( the are under the vasculitis foundation) and see if they can help out maybe one of the wegeners specialist there would take care of him or know someone who would. Department of Rheumatic and Immunologic diseases is 216-44-6056 or 216-444-5632. I see Carol Langford there at the Cleveland clinic.

jeriorleans
06-11-2010, 12:01 PM
I had tried to get my 13 year old an appointment at the University of Birmigham in August of 2009 when he was first diagnosed. Despite recommendations from his doctor, they gave me an appointment in May of 2010. That is how we ended up at the Emory Clinic because they got him in in a month. Rheumotology is one of the few fields where you have to also take pediatrics if you want to treat children. Not only will adult rheumotologist not treat children, they aren't allowed to treat children. Its very frustrating when the doctors who have the most experience treating Wegener's are those that can't treat children. Pediatric rheumys see very little Wegener's because its so rare in children. Rare? or misdiagnosed?

Sangye
06-11-2010, 12:24 PM
I didn't know that they were required to specialize in pediatrics, too. It must be awful not being able to take your son to a Wegs doc.

pberggren1
06-11-2010, 03:20 PM
That sounds ridiculous to me!

jola57
06-11-2010, 05:22 PM
Because of their developing bodies children are different from adults and so we have pediatiritians to treat our kids. Same goes for other disciplines in medicine. However your ped rheumy can alway talk to a wegs specialist to coordinate his treatment. Talk it over with the rheumy, tell him that just because it is such a rare disease and has such dire consequences you would like him/her to cordinate with a wgs specialist.

elephant
06-11-2010, 09:02 PM
I agree with Jolanta, I think you should cordinate with a WG specialist. I was 12 years old ( now 44) when I started to have symtoms of WG....misdiagnosed, I was diagnosed 2008! So I have alot of damage.

JanW
06-12-2010, 01:43 AM
I'm not surprised that they are required to have a pediatric specialty as well. Children aren't little adults and because so much of rheumatology deals with drug therapy and autoimmune issues you could imagine that the doc would have to be very familiar with pediatric physiology.

talentx7
06-12-2010, 01:49 AM
This disease has me so confussed!!! It varies so much from person to person, now throw in a child and what happens?? I wonder if there is more children out there that are misdiagnoised? I should be very thankful that Carter is diagnoised, hopefully without to much damage.

JanW
06-12-2010, 01:55 AM
Probably so. Because my condition is so rare in the African-American population (and I am black) I think I could have been misdiagnosed if my nose hadn't collasped (because there are very few medical conditions where that happens but WG is one).

talentx7
06-12-2010, 02:06 AM
Hi jan, What is this Saddle Nose i am reading about. I never seen any info on it? Is it common? Can you prevent it?

JanW
06-12-2010, 02:29 AM
It's when the bridge of your nose starts collasping. Mine starting with just a nump on the nose (the cartilage started receding) and then collasped over a period of a few months. No pain, and nothing that I could do about it stopping it or preventing it because it doesn't really track the severity of the disease (I'm not so sick otherwise, but do have a deformed nose). It's not horrible, but I'm as vain as the next person and have always been considered good looking, so it does bother me a little.

katarzena
06-14-2010, 05:57 PM
I've been diagnosed almost half a year ago and have been put on chemotherapy too. I am going to school regulary (I'm 17), have been out for few months but everything is okay mow, If you try hard there should be no big problem with school. If you're worried about chemotherapy ( I get IV every 4 weeks so I speak from my own experience) there's no reason too, most people don't have major side effects (we get a much lower dose of chemo then cancer patients) so don't worry about that too. I have a minor hair loss but nothing to worry about. No other side effects
Speaking of steroids, he will get some side effects such as; moon face, big belly, maybe hot flashes, leg cramps.. I highly recommend you to watch his diet, less salt intake. People on steroids have a huge apetite (I had it too on higher doses) and some gain a lot of weight. I gained none. The side effects decrease when tapering down..
I live a compeltely normal life, except that I'm in hospital every month for (currently) chemo and blood works. I got used to it. :)
Good luck with your son! I wish him all the best :)

Sangye
06-14-2010, 10:54 PM
Katarzena, I'm really happy you didn't have some of the more common, awful side effects. It would upset me so much more if I knew that a young person like you were having a harder time. I hope the Wegs goes into remission for you and you never have to deal with it again. :)

talentx7
06-15-2010, 03:55 AM
Wow Katarzena, I am glad to hear you have had minimal side affects. Dosen't look like anyone can avoid the MOON face. My son has a very nice one as well. Carter goes in for his IV dose of Cytoxan tomorrow. He however has not returned to school yet. They fear he might catch a cold. They tell me that would be very bad. He is however complaining of an itchy nose??? Dose anyone know if that is a side affect of meds or something new????

katarzena
06-21-2010, 02:57 AM
Thanks Sangye I'm hoping for the same. Yes everything is going great for now and I'm really trying to keep the positive thinking but I live in a fear. No one knows it tho.
Talentx7- I didn't have an itchy nose, don't know about the others. About the moon face, there was one woman that has been on prednisone for a long time and never got the moon face! Argh! I envy her so much! Without the moon face and other prednisone side effects it would be much easier. I guess I'm super shallow but the looks bother me a lot. lol!

Jack
06-21-2010, 03:47 AM
Not super shallow at all!

I would say that I was typical of a certain type of male stereotype in thinking that I was the least vein person in the world. I did not care too much what I wore or how I looked, it just did not bother me. However, when I had a moon face, I was shocked at my own reflection and would avoid it and now that I have the emaciated look I can't stand to have my photograph taken. Our own self image is a very important part of us and can easily be wounded.