This is so encouraging to read. Thanks for sharing.
Type: Posts; User: blessed2bamommy
This is so encouraging to read. Thanks for sharing.
I'm so sorry you are having to walk this path. It sounds like my daughter's case is similar to your sons. My daughter had sudden onset of chronic ear and sinus infections at the age of 9. (December...
At what point (how low was your prednisone, I guess) when you began to be able to lose weight? I feel so badly for my daughter. She's 5'6" tall. She weighed 120lbs when she got sick. She was so...
We'll be there during the same time frame. I'll PM you my phone number.
Thank you so much for your input. This is good information to read and gives me a bit of better understanding. At Bethany's September appointment was the first time she's not had protein in her...
Yes, we'll be at Vandy's Childrens. She has three appointments that afternoon so we'll be there for a while. She sees her rheumatologist, nephrologist and neurologist.
We plan to ask my daughter's doctor about this at her next appointment (10/22) but until then, I'd love your input on this. What is considered remission? How long did it take you, personally, to...
She, too, is done with RTX (slowly learning all the abbreviations) :) Right now she's on...... Keppra (anti seizure), Lisinopril (for BP), Tums, Ferrous Sulfate (Iron), Methotrexate (once a week...
Just now reading this thread. I hope your infusion was trouble free and you are feeling good.
My daughter had the 3 pulse and then Rituximab. It was a do or die situation. She was very, very...
My daughter that has low IgG is the one with Wegener's. She's 2nd daughter, currently 13 years old. Her doctor said her IgG is low because of the Rituximab.
My daughter's IgG levels are low (200). Her doctor wants to do IVIG but thus far insurance has said they won't cover it. The doctor is appealing the decision so we wait and see.
I'm so sorry for all your son is going through. Thank you for introducing yourself.
I'm sure you are correct. I went back and edited my post to reflect 1,000 not 10,000. :-)
She's at VCH right now for another dose of Cytoxan. My husband is going to talk to doctor about...
Oh how hard things must be to have a child so very young with WG. My daughter with WG is 12 and I know how hard it is for her.
I have no advice or input as we are brand new to this (just got...
Oh that is funny. Sorry yob stands for "year old boy" and yog stands for "year old girl" So I have a 15 year old girl, 13 year old boy, 12 year old gir, 8 year old boy and 5 week old girl.
Hi Pete.
Welcome to this forum though I'm sorry you have a need for it. I have no information to offer. We are brand new to WG. We have 5 children (15 yog, 13 yob, 12 yog, 8 yob and 5 week old...
Jim,
I agree that this is taking multi tasking too far. You made me laugh at that. This is definitely not what we had in mind.
Al,
Yes, she does have kidney involvement. That has been the organ the most affected. Her creatine levels are finally coming down.
Her lungs look great. She's had the joint pain and swelling...
While Bethany's doctors aren't listed as Vasculitis specialists, one of her main doctors worked at Boston Children's for 10 years and is very familiar with Wegener's.
The seizures may have been...
Hi. My name is Kim. My 12 year old daughter was recently (Feb 2012) diagnosed with Wegener's. We live near Nashville so she's been to Vanderbilt Children's for her treatments. She was hospitalized...