15 yr old daughter diagnosed recently

[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.

[Sangye]

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

[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.