whatthewhat
10-30-2013, 01:11 PM
Hey all,
It's rare I am at the Big Keyboard, and free to type a lot.:w00t: But here I am now! Let me first say thank you to those of you who post regularly. I read the forum all the time; the education I have received from you is priceless. I also have had some good laughs and also been glad to know what is going on with you, for better or for worse. Especially in the early days of diagnosis, your words were lifelines. My daughter at one point would tease me that every other sentence out of my mouth on our morning walks began with "Last night I read on the forum..."
Our daughter is now 15. We moved to Southern California over the summer, and I am so grateful to have more access to a variety of doctors. She has remained in treatment with the Rheumatology Clinic at Children's Hospital, Los Angeles, although she primarily goes to the satellite clinic at Miller Children's Hospital in Long Beach. After hospitalization and diagnosis in March, our girl had a hard road ahead of her. She had lost a lot of weight (mostly muscle) and had sinus, lung, nose, and skin involvement. She was diagnosed, by the way, through a skin biopsy - just an f.y.i. She was given two infusions of rtx, put on prednisone and mtx (and all their companions) and did NeilMed sinus rinses.
Now seven months later, she is off of Prednisone, will begin to go off of mtx in January (hopefully,) and still does the NeilMed. Her lungs are no longer leaking blood, her only remaining lung nodule is calcified (wasn't expected to go away,) her sinus CT showed much improvement, and she is working hard in PT to turn Pred weight gain back into muscle as well as address neurapathy in her feet. (She can't stand very long at all without intense pain, and even walking / running will be painful for a day or so afterwards. She uses a wheelchair for extended Disneyland jaunts!!)
Opthamology and hearing tests have revealed no abnormal issues.
Second best of all, she scored a goal in a soccer game two weeks ago (her dad and I sobbed on the sidelines, never mind the other team was getting crushed and it was a relatively easy goal! This was a girl who made a "hat trick" - I'm unsure of the terminology: 3 goals in one game - during tournament play before she got sick, and all she wanted was to be able to play again.) To me, best of all, is her joy and hope are back. She has some "wtf just happened" days, and some times of real frustration and grief, but overall she is more and more her laughing, confident self again.
I continue to believe that Pediatric Wegener's is a different animal than Adult Onset in a few key ways. Her Ped Rheum just told me they used to believe that 1/3 of ped weggies will have one bad episode then none ever again; 1/3 will have one bad episode, 2-3 flares, then none ever again; and 1/3 will fight it the rest of their lives. He said now they (his team) believe it's more like that last third doesn't exist - with advanced treatment protocols this disease can be caged when a child develops it. She will need to monitor her labs probably the rest of her life, and she will be dealing with the ravages of the disease (sinus issues, feet issues) for quite some time. But so far, so good.
When I think back to the horrible days in the hospital, with our girl so very very sick, I also remember how I felt after finding this forum. I hope you guys know how you have walked this journey with me, gone to all the doctor's appointments, sat in the PT waiting area, helped me carry the message of empowerment through education to other weggie moms on facebook, and helped me be a beacon of hope to our daughter.
A gentle hug to you all, especially Phil, Annekat, MishB, and Alysia (sp? sorry!) in Israel. Your positivity is infectious.
yours, WTW:hug1:
It's rare I am at the Big Keyboard, and free to type a lot.:w00t: But here I am now! Let me first say thank you to those of you who post regularly. I read the forum all the time; the education I have received from you is priceless. I also have had some good laughs and also been glad to know what is going on with you, for better or for worse. Especially in the early days of diagnosis, your words were lifelines. My daughter at one point would tease me that every other sentence out of my mouth on our morning walks began with "Last night I read on the forum..."
Our daughter is now 15. We moved to Southern California over the summer, and I am so grateful to have more access to a variety of doctors. She has remained in treatment with the Rheumatology Clinic at Children's Hospital, Los Angeles, although she primarily goes to the satellite clinic at Miller Children's Hospital in Long Beach. After hospitalization and diagnosis in March, our girl had a hard road ahead of her. She had lost a lot of weight (mostly muscle) and had sinus, lung, nose, and skin involvement. She was diagnosed, by the way, through a skin biopsy - just an f.y.i. She was given two infusions of rtx, put on prednisone and mtx (and all their companions) and did NeilMed sinus rinses.
Now seven months later, she is off of Prednisone, will begin to go off of mtx in January (hopefully,) and still does the NeilMed. Her lungs are no longer leaking blood, her only remaining lung nodule is calcified (wasn't expected to go away,) her sinus CT showed much improvement, and she is working hard in PT to turn Pred weight gain back into muscle as well as address neurapathy in her feet. (She can't stand very long at all without intense pain, and even walking / running will be painful for a day or so afterwards. She uses a wheelchair for extended Disneyland jaunts!!)
Opthamology and hearing tests have revealed no abnormal issues.
Second best of all, she scored a goal in a soccer game two weeks ago (her dad and I sobbed on the sidelines, never mind the other team was getting crushed and it was a relatively easy goal! This was a girl who made a "hat trick" - I'm unsure of the terminology: 3 goals in one game - during tournament play before she got sick, and all she wanted was to be able to play again.) To me, best of all, is her joy and hope are back. She has some "wtf just happened" days, and some times of real frustration and grief, but overall she is more and more her laughing, confident self again.
I continue to believe that Pediatric Wegener's is a different animal than Adult Onset in a few key ways. Her Ped Rheum just told me they used to believe that 1/3 of ped weggies will have one bad episode then none ever again; 1/3 will have one bad episode, 2-3 flares, then none ever again; and 1/3 will fight it the rest of their lives. He said now they (his team) believe it's more like that last third doesn't exist - with advanced treatment protocols this disease can be caged when a child develops it. She will need to monitor her labs probably the rest of her life, and she will be dealing with the ravages of the disease (sinus issues, feet issues) for quite some time. But so far, so good.
When I think back to the horrible days in the hospital, with our girl so very very sick, I also remember how I felt after finding this forum. I hope you guys know how you have walked this journey with me, gone to all the doctor's appointments, sat in the PT waiting area, helped me carry the message of empowerment through education to other weggie moms on facebook, and helped me be a beacon of hope to our daughter.
A gentle hug to you all, especially Phil, Annekat, MishB, and Alysia (sp? sorry!) in Israel. Your positivity is infectious.
yours, WTW:hug1: