15 yr old daughter diagnosed recently

[WeggieParent]

I stumbled across your website searching for more information about Wegeners and it has been very educational! Here's our story - my 14yr old daughter was a normal active child, never sick and was a star basketball player. She tore the ACL in her knee and had surgery to repair it. She was cleared by the doctors after 6 months to return to basketball. (I mention that because we wonder if the trauma/inflammation of her ACL tear set off her Wegeners? One of her surgeons mentioned there is some thought that an inflammation trauma may have a link to Wegeners.) A week later she began coughing & was diagnosed with pneumonia & given antiobiotics. We spent the next 2 1/2 weeks back & forth to her pediatrician because she was getting worse. She was gasping for air & they finally sent us to the Children's Hospital & immediately to the ICU on a pulse ventilator. They tested her for H1N1 flu virus and Staph infection in her lungs over & over believing that was the cause of her illness but the tests were always negative. We were watching her die and noone could find the cause. Her heart finally stopped, her kidneys failed and her lungs quit moving air. They put her on ECMO (life support) to save her. The team of doctors working on her were wonderful & didn't give up. She had many blood transfusions, plasma aphersis, kidney dialysis. She was on ECMO unconscious for 2 weeks. She spent Christmas and her 15th birthday on life support fighting for her life. Her lungs became so full of holes that she had 8 chest tubes over a period of 3 weeks to relieve pneumothorax. The nephrologist asked for a PR3 test and her level was 871 which seemed to indicate Wegeners. (They had 3 other children diagnosed with Wegeners in their ICU in the last 2 years.) She was too sick to do any biopsies so they proceeded to treat her as if she had Wegeners because they had no other options. She slowly began to improve. As she improved, the holes in her lungs began to heal & her kidneys returned to good function. One of the many miracles was that she was able to breathe on her own without a ventilator after 4 weeks. They were able to do a kidney biopsy after 2 months & Wegeners was confirmed. She spent 4 months in the hospital but still had a hole in her lung (officially diagnosed as a bronchial pleural fistula) which required a chest tube to relieve the air so a pnuemo didn't develop. She developed an aspergillous fungus in her lungs. She could not have surgery to repair it because her lungs were so fragile. Our pulmonary doctors had never treated a pediatric patient with Wegeners and a bronchial pleural fistula. Her medicines (mainly high doses of prednisone & cytoxan) kept the hole in her lung from healing but without prednisone the Wegeners would attack her lungs so it was a tug of war between what was best for her (and the different teams of doctors). Rheumotology stepped down & let nephrology take over since Wegeners was attacking kidneys & lungs. Pulmonology wanted less steroids but nephrology didn't want to reduce the steroids & let the Wegeners take over. With much prayer we decided to give her body time to heal & keep the steroids at 60mg & spent a total of 6 months waiting & watching the bubbles in her portable chest tube show the air leak. One night she had pain in her back & said something felt different but she wasn't scared. There were no bubbles when she breathed which would mean the hole had finally closed. We rushed to the hospital, they clamped the chest tube & no pneumo developed. It was a hallelujah day! 6 1/2 months after being on life support, she was finally free of all tubes and all holes were healed. Today she is on many medicines - prednisone, voriconazole (for fungus), Cellcept, Bactrim DS, Losartan. Her doctors approved for her to return to school 3 weeks ago with her classmates. Her life has changed completely & her 'new normal' consists of 15 pills daily, washing her hands frequently & wearing a mask when she is around groups of people! She is studying chemistry and has decided to become a doctor now! She hates prednisone with a passion (going from 110 pounds to 140 & having moonface)! But she has a good attitude. Her friends are very supportive and have the slogan "Weggies Unites Us". I told them ya'll were working on T-shirts! I hope you have some ready by Christmas. We will order many!!

[Sangye]

Well I am speechless. That is one of the worst cases I've heard so far-- in someone who survived, that is. I've read that chest tubes are excruciating. I can't imagine what she must have gone through with so many!

I'm glad you found us. Please stick around and let us help you with whatever you need.

[RCOSSIO]

I am curious as to how we can get the medical field to test for autoimmune disorder...especially after reading this. I know Wegs is so far off the scale...but anymore delay and she could have not made it.

[Sangye]

It isn't that straightforward, Richard. Even if they suspected an AI disorder, the ANCA isn't a likely test to be ordered.

[elephant]

Welcome Weggieparent! It is a miracle she made it and the doctors finally ordered the labs to figure this out. Many doctors think WG is so rare that the chances of someone getting it inconceivable. I am too very glad you came to this forum and we are here to help.:hug2:

[misskay]

I read this post earlier today, but it got me so emotional I couldn't respond at the time. It's a miracle she survived... So glad you found us, and shared your daughters story with us. My symptoms started like your daughters did, and I know how scary it is to be seemingly healthy one week and then the next to be in the hospital with chest tubes, unable to breath, and being told you're dying but that they don't know why. I'm eternally grateful to the Rhumey who got my case and thought of WG or I wouldn't be here today.

sangye, I can personally attest to the fact that chest tubes are indeed excruciating.

[pberggren1]

It isn't that straightforward, Richard. Even if they suspected an AI disorder, the ANCA isn't a likely test to be ordered.

Actually, my new Wegs doc, who is a Wegs Specialist and specializes in Internal Medicine and Nephrology said that he orders quite a bit of ANCA testing done. He said he has ordered hundreds of ANCA testing to be done when he headed a Vasculitis Clinic in England.

[Sangye]

Phil, I meant that a regular rheumy wouldn't typically order an ANCA for an undiagnosed patient unless there was very obvious involvement of kidneys and lungs to set off their alarm. Your doc ordered ANCAs all the time because he was in a vasculitis clinic--that's normal.

[pberggren1]

Phil, I meant that a regular rheumy wouldn't typically order an ANCA for an undiagnosed patient unless there was very obvious involvement of kidneys and lungs to set off their alarm. Your doc ordered ANCAs all the time because he was in a vasculitis clinic--that's normal.

Yes, I see what you mean about the regular rheumys. I think even regualr Nephs order quite a bit of ANCAs.

[jola57]

Dear WeggieParent my heart goes out to your daughter and to you. What a brave girl and amazing story and a happy (relatively) ending. I hope that you have had a chance to read some of our youg members stories and some of the ones that have battled this dreadful disease and now are happy mommies. I wish all my best to your daughter and hope she keeps her spirits up

[DEE]

WeggieParent
What a brave girl to have gone through so much , my thoughts are with her and your family . I wish her all the best on her return to school and been back with her friends
DEEx

[pberggren1]

I think that to get sick with Wegs as an adolescent would be the toughest age of all to deal with such an ugly mess. My heart goes out to you WeggieParent and your daughter and the rest of your family and friends. You can always find support on here from us. I was 26 when I was diagnosed. It was tough in the beginning but soon learned how to manage and understand what was going on.

[Fran]

Dear Weggie Parent - Can think of nothing worse than having a child so very very ill - what an awful time you've had. It's wonderful she's making such good progress and I hope it goes on and on ! What a brave girl :thumbsup:

[Psyborg]

Thank God she is doing better. I can't imagine going through this as a teenager, and quite honestly my case seems mild in comparison to many. Sounds like she's a fighter though!

[JanW]

Thank you for sharing your story with us, Weggieparent.

On the topic of ANCAs, it's like the old medical axiom: "what you hear hoofbeats, think horses not zebras" (also known as -- the patient is more likely to have a highly uncommon manifestation of a common disease than the most common manifesation of an uncommon one").

When docs are seeing, on average four patients an hour (maybe three for rheumys), they have limited time to make what is really a snap judgment based on their own best experience and knowledge. WG, and in fact, all of the vasculidites are SO rare that your first step, generally , is not going to order testing for them. Coupled with the fact that people don't often start at the rheumy (raise your hand if you started there -- in my case I started at an ENT for sinus headaches and later a podiatrist for foot pain) and you have what is also known in medicine as the 'blind man describing an elephant' -- a group of people describing a small part of a big animal, and not even knowing the other person is describing another part of the animal.

[WeggieParent]

Now that you mention ANCA, I do believe the kidney doctor ordered an ANCA test when she was in ICU & that helped steer them toward Wegeners. Everything is such a blur in my mind around that time. There were dozens of doctors all throwing around terms like ANCA, PR3 tests, plasma asphersis, auto-immune disease & it was a foreign language to us.

Thank you for your kind words. I love reading your stories and experiences.

Now if you all can get together & find a cure for the side effects of prednisone - that would be great! :biggrin1:

[Sangye]

It's no cure, but I have found a way to greatly minimize a number of the side effects of pred. You can read this thread for info:
http://www.wegeners-granulomatosis.com/forum/medication/943-how-beat-some-preds-side-effects.html

Following this has been a life-saver for me since being back on high-dose pred.

[WeggieParent]

Very interesting information! I'm not familiar with Ayurveda. I'm going to discuss this with my daughter today after school. She doesn't have control of very many things in her life anymore so on matters of diet/exercise it is up to her. She works with a physical therapist once a week on stamina and endurance to help her be strong for a full day of school every day. Jumping rope & jogging. That is helping her lose the extra pounds she gained while she was in the hospital. I think she'll be thrilled to try anything that will lessen the moonface.

Thanks again!!

[LisaMarie]

O MY...I had a hard time reading your post...My heart goes out to you and and spirited daughter...WG is no fun and I can not imagine going thru this at 15 yrs old...I am having a hard time dealing with it in my 40's...There are alot of seasoned WG here that can guide you and give you all kinds of great info. I am a new be and still learning......Just please make sure someone listens to your daughter when it comes to her aches and pains or feeling different...and help your daughter be her own best advocate...we all get tired of being sick and tired and at times fake well to be able to feel normal for once ....From all I have learned here it is the most importnat thing ...Listen to your body.....I will keep your family in our prayers and give your miracle daughter a big hug from all of us......you are one amazing mom:hug1::thumbsup:

[drz]

I think that to get sick with Wegs as an adolescent would be the toughest age of all to deal with such an ugly mess. My heart goes out to you WeggieParent and your daughter and the rest of your family and friends. You can always find support on here from us. I was 26 when I was diagnosed. It was tough in the beginning but soon learned how to manage and understand what was going on.

I know it was hard on my family watching me during my intiial treatment when they didn't think I would survive. I can't imagine how difficult it would be to watch a teenage daughter go through such a difficult experience for such a long time. The one fringe benefit is that most problems in the future will seem like small bumps.

[drz]

It isn't that straightforward, Richard. Even if they suspected an AI disorder, the ANCA isn't a likely test to be ordered.

It took over a week of misdiagnosis before they called in a rheumatologist who order it for me. By then my hearing was gone, kidneys were failing and I was coughing up blood but my "broken arm" had healed over night from antibiotics, but my " pneumonia" wasn't getting any better nor was kidney function. They had ruled out a heart attack.

They told me my ANCA readings broke the record at the Mayo Clinic and figured it was probably Wegener's disease but needed a kidney biopsy to confirm it the next day.

I agree they are only going to look for Wegener's after they rule out anything that might be more common to explain the symptoms. That is how it is usually diagnosed, sometimes too late unfortunately. We can promote more info and knowledge of Wegener's disease to raise awareness of it and encourage physicians to consider it when they see similar symptoms and maybe it will help somebody in the future get an earlier diagnosis.

I have also heard of stories where a sharp physician recognized it early and started treatment without even having a confirmation biopsy. Bit I think this is unusual.

[jola57]

I think that ANCA test should be given to all patients routinely when they can't get an answer from regular tests and observations and the patient is not getting better. This is something that should be in a memo from the government to all physicians in a bulletin.

[Ivelisse]

Glad she's doing better :)
I was also diagnosed with Wegners at 15.


Blessings to you & your family.

[pberggren1]

An ER doc diagnosed me within 20 minutes and ordered an array of tests including ANCA.

[elephant]

Phil you are lucky, I have heard of one case a woman 40 years ago went to ER in North Carolina with a bloody nose, joint pain and was diagnosed immediatly by a resident. She was very, very lucky. But she was on cytoxan for 5 years.

[RCOSSIO]

I was diagnosed that same day I went to the hospital...when they did the Lung CT scan a pulmonary doc who specialize in Wegs came over and said " I believe you have Wegs, but without a biopsy we won't know for sure. Two days later confirmed.

[Jack]

It took 18 months, lots of unnecessary surgery and finally kidney failure before they diagnosed me. :(
During that time I saw at least four different specialists, but none of them put the whole picture together. The guy who worked it out had just read an article in a medical magazine about it.

[JanW]

And let's not forget that ANCA isn't always positive, even if you have WG. There have even been cases when people have been diagnosed with WG (my ENT has had one), based on inflammatory blood work (but negative ANCA) and horrible sinus/saddle nose issues -- and it turned out to be cocaine abuse (as you might imagine, people don't always tell their docs about that). I actually saw that presented on the VF's website from the last symposium as well (maybe it was even the same case, I don't know).

All of this is simply to say that what seems evident to all of us can be really tricky even for some otherwise decent docs.

[lafounk2]

Hi, my name is Kelly. Welcome to the forum. Lots of very knowledgeable WG people here. I have found this site so useful and helpful dealing with my son's diagnosis. My son, Josh, was diagnosed in April 09 with WG at age 15, now 16. What started out as a lump behind his ear in Jan 09 then ear infection then sinus infection with blood show turned into WG. Between Jan and April 09, I brought Josh to 2 ENT, 1 ER visit, and multiple pediatrician visits because Josh was blowing blood out of his nose and in a lot of discomfort. Each time, I was told that he had a chronic sinus infection. Looking back in those 3 months, he had various joing pains. He'd wake up one morning saying his elbow hurt and the next day it was better, but his knee would hurt. He even said his hand would lock up when trying to hold a pen or pencil and utencils to eat. Josh broke a bone in his hand a few years ago and I wonder from the inflammation of that trauma it that's what started WG. He was pretty healthy then (other than open heart surgery at 10 months old to repair a heart defect). How much could one child take in his lifetime?? Anyhow, Josh also had a blood clot in his left leg. He had surgery twice and a few stents placed. He's currently on coumadin. Josh is doing very wells these days other than being on dialysis. He's ready for transplant now, but no living donors available so he's on the deceased donor list. Josh has lost a remarkable 40+ pounds. He looks and feels great. WG seems to be in remission. I sure wish they could come up with a cure or a cause for WG. However, I do feel perhaps that inflammation from Josh's nasty sinus infection or his broken bone in hand is the cause and trigger to this. I wish you the best with your daughter. Together we will fight this and never give up hope..:thumbup:

[Sangye]

The first day I saw an MD-- a pulmy, bec my chest CT was hideous-- he ordered a battery of tests including ANCA.

[jola57]

Dear Kelly, thank you for the update on Josh. It is good to hear that he is doing so well.

[WeggieParent]

Kelly, I am so happy to hear Josh is doing well with his WG. That is very encouraging! My daughter had joint pains before she was diagnosed at Christmas. I always assumed it was growing pains & dismissed them. Looking back I can see many signs that something was starting to go wrong. She also had a large blood clot in her left thigh. They found it when they were putting her on life support. The procedure requires 2 large cannula tubes to be inserted in the main arteries in the thigh & 2 in the neck. This is another of many miracles. The blood clot was located in the exact spot they cut open to place the cannula & the surgeons were able to remove it immediately. She had Lovanox shots for 6 months & will have routine blood work for the blood clot.

Thank you for sharing Josh's story with me. I've always been an overprotective mom and having a child with a disease that has no cure is extremely hard for me. It is encouraging to hear of other children with WG that are coping & doing well.

[jeriorleans]

My son was diagnosed in August of 2009 at the age of 13. Again, thinking back, signs were there. He had always complained of pain in his ankles and knees. The pediatrician said it was growing pains. He started getting these weird blue marks on his ears, face and chest which the dermotologist said was blood under the skin. He started having chronic nose bleeds. In Feb. of 2009 he got an ear infection, in March the ENT put tubes in his ears without anesthesia in his office and because he was in so much pain I allowed this. By June after numerous trips to the ER, we found a new ENT who took him into surgery to put new tubes because the other ones had already fallen out. That is when the granulation in his ears was found. He has lost about 60 % of his hearing. The ENT did a biopsy on his nose and ears along with an ANCA test which confirmed Wegener's. He was put on 60 mg of steroids and cytoxan. After 4 months the cytoxan was switched to Methotrexate. He seems to be doing really well, but now i worry because he is losing too much weight. His last urinalysis showed occult blood +3 and red blood cells in the urine but no blood casts. He is scheduled to see a nephologist next week. The most discouraging thing is living in New Orleans there are only two pediatric rheumotologist and neither know what they are dealig with so we go to Atlanta for treatment. Although its only 10 hours when you want an answer now, its 10 hours to far.

Your daughter has a rough ride ahead but they deal with it a lot better than us moms. When he came home and told me he joined the football team at school I almost lost it but realize that we have to let them live their lives. We have to let them control the disease and not let the disease control them. If you ever need to chat feel free to email me at [email protected]. There is also a chat site on yahoo called for parents with children with Wegeners.

[WeggieParent]

Thanks Jeriorleans. Glad you found a new ENT. Wish there was a way to tell what doctors graduated at the bottom of their class! We've had one or two that I'm sure barely passed med school.

Are there very many side effects with the methotrexate? Our monthly visit with the nephrologist was this week & he has mentioned if her numbers show her WG is starting to flare, he may change her from Cellcept to Imuran. It sounds like your son is successful on methotrexate.

How is the football going? That is great that he feels well enough to play. We love watching high school football on Fri nights at our school!

[JanW]

I have had no side effects with mtx. Only 'iissue' for me anyway, is that I have to severely limit alcohol intake because the drug is taxing to the liver. Of course, that shouldn't be an issue with a minor!

[WeggieParent]

True! I've warned her that she can't drink alcohol when she's older and also that boys have lots of germs. So, they are off limits too. :smile1:

[Sangye]

Seems that Wegs can be very convenient for a parent, eh? :wink1:

[jeriorleans]

A.J. doesnt' seem to have any side effects from the MEthotrexate. At first he was tired for a few days afterwards but not any more.

[sue7211]

My son was diagnosed 2.5 years ago with reactive arthritis after a misdiagnosis of septic hip, complete with surgery and 6 weeks of antibiotic treatment. Other joints flared during the treatment so we were sent to rheumatology. Starting about a year ago he had GI symptoms of diarrhea and cramping. His older brother has ulcerative colitis so they thought he had that but his colonoscopy was fine and the GI stuff stopped. Then he started having neurological symptoms of "head rush" combined with cheek and mouth numbness. We saw a neurologist who ordered brain MRI, EEG, tons of blood work, and referred him to a cardiologist etc. Everything was fine. Once 6 years ago and once this past March he had a racing heart incident. The cardiologist was able to see the cause of that and it doesn't need treatment right now. Next in May 2010 he had a bad mouth sore, then multiple, transient and bilateral joint and muscle pain combined with fatigue and anorexia. We started with the pediatrician who figured out that he had lost 20 pounds since Feb.(we all thought the slim down was because he had grown several inches and also playing high school baseball), ordered labs which showed very elevated CRP and ESR. We were then sent to pedi rheum where they were perplexed, insisted on an eye exam that day(a speck of red on the white of his eye). insisted that he be vigilant about taking his naprosen and ordered urine and more blood tests including ANCA. His urine showed both blood and protein so they repeated it the next day and it showed the same thing. An appt. was set up with a pedi nephrologist for 3 days later on a Monday. On Sat. night we noticed very dark pee and reported it Sunday morning to the pediatrician who replied that we were seeing the nephrologist on Monday so to wait (now we know that was a mistake). The nephrologist took one look at my son and said she had to admit him. At this point he was so fatigued and sick he really couldn't walk. On admission they did more blood work and started an IV. As we settled down for the night tons of doctors came into the room. His potassium was very elevated and he was in acute renal failure. Just 1 week earlier the initial blood work his kidney function was fine. Now it was at 8%. About the same time his ANCA test came back positive. After a few days of IV sterioid and dialysis he was stable enough to have a kidney biopsy that confirmed Wegener's damage as well as damage from the naprosen. Naprosen doesn't usually damage kidneys unless they're already damaged by something else. They gave him a couple weeks to donate sperm and then started cytoxan. His kidney function is about 40-50 percent and seems to be staying there. Blood pressure is difficult to control even on two BP meds and a low sodium diet. He was a great athlete playing soccer and baseball year round before this. He has been having a terrible time getting back into any sort of shape. We started with a new physical therapist today who I think will give him a program that will get him in shape gradually. School has been very tiring for him and now he's getting depressed about it all. Thanks for listening! We attended the Vasculitis Foundation conference in July and that was great for him to be able to hang out with other teens with vasculitis. Can there be a vasculitis conference every month? Just kidding but it would be helpful. He has described the way he feels as having his head taken off his old body and put on a new body that he knows nothing about and that the none of the old things he did that worked for the old body work for the new body. I bet a lot of you have or are experiencing this. We are looking for therapy for him, both one-on-one and also a teen support group with others that are chronically ill. Any wisdom would be appreciated!

[elephant]

Hi Sue, I can't imagine what your going through and your son. I am 45 years old and had this disease for over 30 years (misdiagnosed) diagnosed in 2008. I was admitted to a Childrens Hospital at age 14 ..turned 15 while hospitalized. First diagnosis at age 12 was RA, but also had other symtoms. Going back to school was really hard, I too lost weight...and had kids in my HS ask a bunch of questions. I really could not answer them all. I was not given much info...I did not belong to any support groups because they didn't have them back then. I was blessed to a supportive family and a couple of good friends. I really didn't talk much about my illness and kinda buried it ( denial)...evenually I had a kidney transplant...my brother gave my his kidney. I would say after that brand new kidney I felt much better. I was put on high dose of prednisone and rejection meds ( cyclosporine).....I really think it kept the Wegeners disease kinda quiet.
I just wanted to let you know he will get through this, it won't be easy but he will get better, sounds like you are staying on top of his symptoms and that is important. He will have his ups and downs. Wegeners will never go away, I have survived this far...even went to college and have two degree's. Adoped two beautiful children and even worked.
Sounds like he has a great support system and he will get throught this.:hug3:

[Sangye]

Hi Sue, welcome to the group and sorry you had to find us. I'm glad you got to the VF conference so early after diagnosis. I can sure understand where he's coming from in terms of the "old head on new body" feeling. Therapy is a very good idea. I'd be lost without it. All the stuff you come into Wegs carrying gets magnified by the stress of a chronic disease. Your son has already been through so much and his journey with Wegs is just beginning.

I shuddered reading that they had him on Naprosen. It's so damaging to the GI tract.

What dose of pred is he on at this point?

[JanW]

Hi, Sue, and welcome to the group. I'm pretty sure that we met at the forum and I encouraged you to come here. Feel free to PM me if you don't know who I am!

Anyway, I know that there are people here who have teens with these disease, as well as yahoo boards for parents. I'm sure that others will be along to tell you about this. I'm glad he's getting better with PT.

[WeggieParent]

Hi Sue.

My daughter also became depressed right before school started last month. Her beautiful long blonde hair has become so thin you can see her scalp, her face is almost unrecognizable because of swelling from prednisone and she doesn't have the stamina to do what her friends do. She said she feels like she's living in someone else's body and she hates that body. Our Children's Hospital recommended a physical therapist at the hospital that specializes in sports recovery and that has made the difference in her attitude. She treats her like an athlete getting into condition and my daughter loves that. She doesn't feel like it's hopeless anymore. Our nephrologist contacted one of his WG patients living in our city that was diagnosed at 15 and is now in college and asked if he would be interested in talking to my daughter about his experience. He gave us his name, we contacted him and my daughter has gotten lots of encouragment knowing he was in the same place she is and now he is successful in college and living a happy life. He will text her occasionally with inspirational messages to give her hope.

I hope your son's physical therapist will give your son peace of mind that he can get strong again. I desperately hold on to those stories where someone with WG has gotten better.

You were very smart to attend the VF conference. I wasn't aware things like that even existed. You seem to be on top of things and taking charge! Go mom!!

[sue7211]

Thanks to all of you for your words of encouragement that my son and the rest of us will get through dealing with the ups and downs of Wegener's. Today, well technically yesterday, 10-10-10, was my son's 16th birthday. He spent most of the day at a 6 Flags park riding on roller coasters with a pass that bypassed all the lines. He and his older siblings came home very happy and tired. A lot has happened since I posted his story. He has started therapy with an intern at his school. In addition I am working with our mental health insurance plan to find someone who does therapy with adolescents who have chronic illness. Most of his back pain is gone as he is working with the new physical therapist. We had a second opinion appt. with an adult rheumatologist who is a vasculitis expert and involved with the Vasculitis Foundation. She met with his pediatric doctors and they decided that he needed a kidney biopsy to determine if he was in remission since he had been on cytoxan for 3 months. He is in remission and has now switched to azathiaprine. So far no side effects. He is currently on 30mg of prednisone as well. The adult rheumatologist has agreed to accept him as her patient. This is a great relief as the pedi rheum was not following him well or very involved in his care. He also talks really well to the new doctor and she talks to him (not me). I feel so much relief to have a doctor who is a vasculitis expert supervising his care. His creatinine level, 1.5, was the best it's been since May as well so they think that while there is severe kidney damage the healthy parts might be starting to function at higher level to compensate.

@Jan: Yes, it was you who steered me to this forum and I can't thank you enough! We had dinner together at the Vasculitis Conference. You are such an inspiration to me! All of you are just getting through each day with this disease, let alone working and raising children, everyone deserves a medal, .

[Jack]

That all sounds like great news sue. :)
Your son is so lucky to have you working to give him the best chance possible and his current treatment seems to be right on track. I'm sure he is going to do fine.

[elephant]

Sue, that is wonderful that your son is heading in the right direction. He will evenually do all the things that a normal 16 year old boy does. When I was 15 my creatinine was 2.0 and they told me that I would eventually need a kidney transplant....when I turned 24 my creatinine was a 7.5, thankfully my brother gave me a kidney.
Even though my creatinine was 2.0, I still did the normal teenager stuff, I was a very head strong and stubborn person and still to this day, I am a fighter! Back then they kept me on a low dose of prednisone and high blood pressure medicine. Your a great mom!

[Sangye]

Yay, Sue that's all such wonderful news! I'm very happy to hear he's got a Wegs doc taking care of him. I wish all the kids with Wegs could have that. Keep us posted. :smile1:

[JanW]

Hi, Sue -- I thought that was you! I'm so glad you are hear with us, and glad to hear it is going so well for you boy.

[jola57]

Hello Sue and welcome. I am glad things are looking better for you son. It seems he has a good team working with him.

[WeggieParent]

Sue, that is very encouraging to hear your son is improving and - wow - feeling well enough to ride roller coasters!! Love to hear that!! Sounds like you've got a fun-loving adventurous 16 yr old!