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View Full Version : Hello - my 14 year old son was recently diagnosed



Theresa
05-06-2010, 10:38 PM
Hello, everyone! It is so wonderful to find this communitiy of knowledge. My son was diagnosed with Wegener's about 6 weeks ago. He was a very athletic swimmer and in great health. He started getting sick in January and just got continually worse. After struggling for several months from doctor to doctor, he got so sick he ended up at Children's Medical Center in Dallas. A team of Rheumatologists, Renal, and GI doctors worked together to diagnose him. They thought it was Crohns for a while because he has some small intenstinal damange. He is being treated with Cytoxan and Prednisone. So far we are very blessed that he is not having bad side effects. He does have a lot of puffiness in his face and trunk area.

I'd like to hear from anyone else who has teens that are being treated in Dallas. Our doctors are actually from the Arthritis Clinic at Scottish Rite Hospital.

JanW
05-06-2010, 10:59 PM
Hello, Theresa, and welcome. Sorry you had to find us.

I'm a newbie also, having just been diagnosed in January, but probably suffering from symptoms for several years. I take it that your son has kidney involvement as well as GI? Does he have nasal and throat also? This disease must be so, so hard for a teen to deal with.

Brooke
05-06-2010, 11:23 PM
Welcome to the group and sorry to hear your son has Wegener's. There are a lot of people on here with some great information!!!

elephant
05-07-2010, 12:03 AM
Hi Theresa, so glad your son was diagnosed early. I too was very young 12 years old when I started with arthritis symptoms.... back then the doctors had no clue what was wrong with me, I too was on prednisone and cytoxan. I was diagnosed with Wegeners two years ago, I am 44 years old now. So the whole time I had Wegeners disease, but the doctors did not know what? They knew it was autoimmune, they were thinking Lupus. My story is long. You will get great support here. Ask many questions, will be happy to answers them.

Sangye
05-07-2010, 01:11 AM
Hi Theresa, I'm glad you found our group. This disease stinks for anyone, but I'm always so upset to hear a very young person being diagnosed with it--though I'd rather have them get the diagnosis right early on.

Having said that, I'm now going to nag you to get your son to a major Vasculitis Center for evaluation and treatment. It may seem that the docs right now are on top of it and that with such a large team they will cover all bases. Unfortunately, that's not true with Wegs. Many of us have had large teams of docs who were very skilled in treating other conditions, but they were not Wegs specialists. I can't emphasize the importance of this enough.

Wegs specialists each see hundreds of Weggies. Most rheumys will never treat a single Weggie. Some have treated a dozen in their entire career. If we took a dozen of us in this group, our cases are so wildly different that it hardly looks like the same disease. We need docs with tons of Weggies just to get a reasonable comparison.

If your son's docs consult with Wegs specialists by phone that's better than nothing. But it's nowhere near as good as seeing those docs yourself--asking them questions and having them guide treatment. Wegs is full of surprises. It's sneaky and often difficult to know what's happening. The drugs cause side effects that mimic Wegs activity and it can be disastrous to have a doc attribute active Wegs either to drug side effects or collateral damage from the disease. I've been there. Wegs also does silent damage, even when the lab work looks good. If a doc doesn't know to rely on signs and symptoms also, that can be disastrous as well. I've also been there.

The major Vasculitis centers in the US are: Mayo in Rochester, Cleveland Clinic, Johns Hopkins (Baltimore) and Boston University.

I hope you'll understand my nagging is aimed at ensuring your son has the best possible outcome.

Theresa
05-07-2010, 10:17 AM
Thanks for all of the notes of welcome.

JanW - Justin (my son) has had sinus issues for most of his life. They were annoying but not life impacting. He had surgery for a deviated septum and to widen his sinus passages in March, it was a week later that we ended up at the hospital because of severe stomach pain, due to the problems in his intestines. So he has had sinus issues, probably from the WG. He had infarcts in his kidney but no damage at this point. He has very high amount of protein in his urine so he is on blood pressue meds to protect the kidneys. No lung impacts. He had inflammation in his esophogus too.

Sangye,
Thanks for the advice. I'll see about getting his seen by one of the places you listed.

Really appreciate all the support. Thank you!

sharon
05-07-2010, 07:10 PM
Welcome Jan & Justin,
Glad you found us, sorry that you had to in the first place.
My only piece of advice is ask lots of questions, especially here, no question is too stupid, we have all been there.
Once again welcome

sharon
05-07-2010, 07:12 PM
Welcome Jan
Glad you found us & sorry you had to. The best piece of advice i can give you is to ask lots of questions, especially here, no questions is to stupid or insignificant - we have all been there.
Once again welcome

JanW
05-07-2010, 11:12 PM
Thanks for the welcome but I'm not new! Been here since the beginning of the year!

Sangye
05-08-2010, 12:26 AM
I'll see about getting his seen by one of the places you listed.


Wow, that was easy! Usually I have to do a LOT more nagging to convince someone. LOL-- thanks for the day off! :D

sharon
05-08-2010, 03:04 PM
sorry JanW, I typed the wrong name, but i'll say hi to you,(i was trying to reply to Theresa) i was having a wg moment and this stupid notebook jumps around so much, i can't turn the mousepad off and it seems to have a mind of its own, i am thinking of introducing it too a hammer! Have great day!

Doug
05-09-2010, 06:27 AM
And today is my day to encourage you top read up on the disease so you can ask those important questions. This link has a place with basic questions to ask the docotrs involved in WG treatment. Hope it lightens your load!

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

lafounk2
05-11-2010, 02:56 AM
Hi, My name is Kelly. My oldest son, Josh, was diagnosed with WG in April 09 at age 14 (turning 15 on May 1). He just had his 16th birthday. This whole ordeal has been a roller coaster ride. First signs of trouble started when I noticed a "bump" behind Josh's right ear in Jan 09. A CT of that spot showed a "swollen lymph node." About 2 weeks later, Josh started with an ear infection which then turned into the nasty sinus infection. Between Jan and April, I brought Josh to two ENT specialist, multiple pediatric specialists, and an ER visit once due to blowing blood out of his nose despite 4 rounds of antibiotics for which DID NOT HELP. We had a vacation planned for Florida April 3 - April 14. One week before vacation, Josh started with a low-grade fever, sleeping all the time, and still nasty crusty bloody nose. Two visits to Drs 1 week before our trip and we were told it was just a "Chronic Sinus Infection." Well, we headed to Florida. Staying at my brother-in-laws in Port St. Lucie, Josh slept the whole week. One night he woke up feeling dizzy. My husband and I brought Josh to a clinic there where a blood test for mono came back negative. Our last 2 days in Florida were to be spent in Orlando taking in Universal Studios. We didn't end up at Universal because Josh started complaining of his left leg hurting. We decided to stay back at our hotel and that's when we noticed that Josh's left leg was swollen. I immediately called our pediatrician who instructed us to go to the ER. That's where we were told that Josh had a blood clot in his left leg and his blood work showed that his creatine was 2.6 (not good!). Josh got air ambulanced from Orlando to Fletcher Allen in Burlington, VT (closest to our home but 1 1/2 hrs away from home) two days later. A two-week stay and lots of test showed that Josh had Wegener's. His ANCA was positive and kidney biopsy proved it too. Since then, Josh had surgery twice on his left leg to clean blood clot. Kidney's were hanging on until Nov 09. Josh has been on dialysis since Nov 09. We're hoping for kidney transplant sometime this summer. It is really hard to have your child go through all of this especially at such a young age. We take things day by day. I'm sitting with Josh right now at dialysis. We cannot wait until transplant time. Please feel free to e-mail me anytime if you wish to chat. My home e-mail is [email protected].
Take care,
Kelly

Nancy
05-11-2010, 05:18 PM
Hello Theresa -
Sorry to hear about your son's new found diagnosis. I am fairly new to this website and have found good advice and some regular humor as well... the kind that hits just when you need it. I have had Wegener's now for almost 14 yrs and find that it is the most interesting imposter so far.. Much more than Lupus is rated to be... The reason that everyone is encouraging you to see a Wegener's specialist is many people who try hard to do the best - but do not understand the variety of forms the WEGS can take... I am a Nurse practitioner and after diagnosis , I have seen pulmonologists - who have never treated it and were not interested in finding out how... Rheumatologists that threw lots of prednisone and cytoxan/Methotrexate at it - but then confessed that they did not understand why the lab was showing the positive disease results... You will be your son's best advocate... hit the sites - NIH, Clevland Clinic, Vasculitis Foundation, etc... Some of the most innocent signs and symptoms can give you a head's up before an impending exacerbation of the WEGS... Good Luck and welcome again - have him join in as well - there are probably questions that he wonders how to ask... I know I did and I was in my early 30's...

Sangye
05-11-2010, 11:15 PM
Nancy, I'm so glad to have you in this group. Great explanation of why a Wegs doc is necessary.

Kelly, it's good to hear an update on Josh. I sure hope he gets a kidney soon so that he can enjoy his summer off of dialysis. I can't believe it's been a year already since he was dx'ed....

Natalie
05-13-2010, 06:59 PM
hi guys , so young I can Begin to imagen how you are dealing with all this , My hats off to yous and hoping for the best .. hang in there xxoo