mom of a daughter with WG

[BrianR]

You are getting good advice from Al BTBAMommy (Kim?). This is a terrible thing for your daughter, you and your family to be faced with. I do not need to tell you that Wegener's is a serious disease that you need to stay on top of and become very involved in the treatment. This I am sure you already know.

When my wife was diagnosed with WG she, like most others, was very, very ill. Not as bad as some but very ill nonetheless. I tell you, I was a complete wreck. For whatever it's worth, it does and will get better. This forum is a wonderful place to be for support AND information.

Have faith that things will get much better (it will!) and stay very involved in your daughter's treatment. Please get a WG specialist - you will need him/her for a long time until (not if) they come up with the cure.

If so inclined, please visit www.weggiesunite.blogspot.com

Peace.

[annekat]

I remember a young girl, I think her name is Holly, around 14, maybe, whose parents were on the forum awhile back. She had Wegs with kidney involvement and was doing pretty well, if I remember right. I wonder how she is doing.

[Palmyra]

Hi Kim,

I too, am the parent of a 'child' with Wegener's, although my child is now 26!! She was first diagnosed w/ Crohn's when she was 14, then Wegener's at the age of 20. We live in Texas, but I took her to the Mayo Clinic, Rochester, to see a Doc there that only treats vasculitis.

Several members have recommended that you take your daughter to one of the major Vasculitis centers, and I could not agree more.

Even if it is for one initial visit, these specialists see nothing but vasculitis and have so much experience with this rare condition and are on the cutting edge regarding autoimmune science. I wish you and your family all the best during this stressful time.

I hope you have future time to contact the Vasculitis Foundation as well. They have been of great help to my family:
http://www.vasculitisfoundation.org/

You have found this group, and I think it is second to none regarding support.

Best Wishes,
Jane, mom of Alison

[Dryhill]

Blessed2bamommy, welcome to the forum as you have already discovered this is a good place to get advice. As a parent I do not envy you, having a child with such a nasty disease and giving birth all at the same time, I know you ladies like to prove you can multi-task but I do think this is taking things a bit too far. I hope you and your baby are doing well and that your elder daughter gets the treatmentr that she clearly needs.

Jim

[blessed2bamommy]

Blessed2bamommy, welcome to the forum as you have already discovered this is a good place to get advice. As a parent I do not envy you, having a child with such a nasty disease and giving birth all at the same time, I know you ladies like to prove you can multi-task but I do think this is taking things a bit too far. I hope you and your baby are doing well and that your elder daughter gets the treatmentr that she clearly needs.

Jim

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.

[jeriorleans]

My son, A.J. was diagnosed in September, 2009 at age 13. He is now 15 and was doing very well until recently. A very large chlosteotoma was discovered in his right ear that extended through the middle ear into his sinuses and all the way to the base of his skull. All of the bones in his ear had to be removed. He is still recovering and it is unknown at this time how much hearing he will have. He has been wearing hearing aid since his diagnosis as the Wegener's attacked his ears and nose. he is currently on Imuran and his rheumy just raised his dosage to hopefully prevent this from occurring in his left ear.

This disease is very hard on teenagers. Kids tease about everything from the acne the steriods cause to having hearing aids to the weight gain.

[annekat]

My son, A.J. was diagnosed in September, 2009 at age 13. He is now 15 and was doing very well until recently. A very large chlosteotoma was discovered in his right ear that extended through the middle ear into his sinuses and all the way to the base of his skull. All of the bones in his ear had to be removed. He is still recovering and it is unknown at this time how much hearing he will have. He has been wearing hearing aid since his diagnosis as the Wegener's attacked his ears and nose. he is currently on Imuran and his rheumy just raised his dosage to hopefully prevent this from occurring in his left ear.

This disease is very hard on teenagers. Kids tease about everything from the acne the steriods cause to having hearing aids to the weight gain.

Jeri, my heart goes out to your son for all he's been through. I remember the pain of being teased in school, but I didn't have Wegener's. Now, I have hearing aids, and it is not a big deal, but I can imagine how it would have been having them as a teen. This new development sounds very scary, and is more than most of us with ear involvement have to endure. I can only hope that he is young enough to see a cure for Wegener's and other autoimmune disorders in his lifetime.

[NicShaf]

I'm glad you've found this site for support and information. All our best to you and your daughter.

[Sangye]

Welcome to the group, blessed2beamommy. I can't imagine how you're managing all this! I second what others have said about getting a Wegs specialist involved. It's hard to overstate how important that is when treating a highly variable, incredibly sneaky disease like Wegs. And she already has a complicated case. Get the very best doctors involved.

I'm sure your daughter must have been on 1,000 mg solumedrol (not 10,000) as that's the highest dose. They typically give it 3 days in a row. Truly horrible--I started on that dose and have great sympathy for anyone else who has to have it.

My Wegs doc at Johns Hopkins (Dr Seo) has told me that they have to use higher doses of pred in kids. Apparently Wegs is more tenacious in young people. Another reason to get an expert involved.

[Sangye]

Jeri, I'm so sorry to hear about your son's new complication. How awful!