Hi Helen,
Our daughter was diagnosed 10 years ago at age 14, and I've gone on to become very involved with a non-public online group for parents of pediatric-onset wegener's. Your son is a touch...
Type: Posts; User: whatthewhat
Hi Helen,
Our daughter was diagnosed 10 years ago at age 14, and I've gone on to become very involved with a non-public online group for parents of pediatric-onset wegener's. Your son is a touch...
This is so beautiful Alysia. He surely was a guardian angel for our daughter when she needed one the most, and I pray he continues to bless us.
https://www.theatlantic.com/family/archive/2019/05/support-group-parents-whose-kids-have-rare-disease/590680/
Our daughter had an inexplicable cough and finally she was compliant with a prescription for a once a day inhaler and that did the trick. It was this weird dry cough kind of like yours, not all day....
Our daughter has been treated by several Pediatric rheumatologists. One I recommend without hesitation is Suhas Radhakrishna, who works out of Rady Children's Hospital in San Diego, CA. Also, I have...
Thanks for tagging me back in the thread, Alysia. I have heard that the Healthwell Foundation (pediatric wing of Genentech) no longer gives grants to Pediatric WG patients for Rituxan. :-(
Holy New Year, fearless leader! We could have a thread, I suppose, with just "where are you from" as the comments? Or maybe, even better, where you are treated! But, I tend to agree that if it wasn't...
Nothing to add medically; just super sorry you are going thru this :(
Well, to start "Yogasloth" is such a brilliant username that I can't help but cheer you on :thumbsup: And you also nailed that phenomenon that any forum like this or FB group is going to have a...
Oh man, what a turd! I am so sorry. You did not deserve him leaving like that - and Rtx does not deserve to be treated that way either! It's not even chemo for heaven's sake. YOU are practicing brave...
In most of the pediatric cases I know of, the child is able to go back to school and maintain regular children's activities, although they very very rarely re-achieve the level of athletic prowess so...
Here's a study about the efficacy of Rtx and Ctx in refractory WG https://www.ncbi.nlm.nih.gov/pubmed/28134075/ and here's an article citing a study about how pediatric-onset WG is refractory...
I just realized you are probably from the UK. I think you might want to ask your docs to consult with ped rheumys from the US - I believe our treatments are a little more effective than yours (?)
Thanks, Alysia, for the heads-up! Hello Smytk, I have sent you a private message. You can read about my daughter's story by clicking my profile name etc. Although my daughter has not had eye...
Alysia and others might have better insight than I. All I know is on FB I had chatted with "Lennie Saurkraut" (did I get that right?) about this same topic, since he and a woman on the WG FB group...
To be very blunt: I am no doctor, but I have been researching studies about GPA / WG over the past 5 years. My active and healthy child was diagnosed, and we were a fitness-focused family living in...
Our daughter was dxd with WG when she was in her teens. I prioritized attending the Arthritis Foundation's annual (summer!!) conference for pediatrics over the Vasculitis Symposium because of the fun...
I believe, and I think you do too, that you have Divine help in carrying whatever emotions are too much to handle alone. One help you have been given is this forum, full of people who not only care...
I am so excited for ANY progress in AI therapies!! But I think it's CD19 that's the issue for WG? I thought that, to oversimplify, the vaccine was found to do for Type 1 what Rtx does for WG.
... I want to add:
I think it's important to get your labs done at the same place for consistency in readings & results, and to know your own #'s in the areas in which WG is affecting your own...
Hi Courtney,
My daughter was diagnosed as a young teen, and when she turned 18 I turned The Folder with lab #s over to her, so forgive me for not having them to refer to!
She had been on Mtx...
Nagesh, I have pm'd you about a child in India with Wegener's.
Such sad news...
The medicine angle rings a faint bell, but I am sorry I don't remember specifics, and I don't have my notes anymore. While you wait for the doc to get back to you, what about your water intake? Has...
Hi Lynette, welcome. I am the mother to a young woman who has Wegener's (she was diagnosed 5 years ago at age 14.) I remember where I was the first time I read the forum after her diagnosis. After I...