mom of a daughter with WG

[blessed2bamommy]

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.

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 consultant a specialist.

[blessed2bamommy]

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.

I'm so sorry for all your son is going through. Thank you for introducing yourself.

[pberggren1]

I'm so sorry AJ has to go through this. I was totally deaf for a year so I can kinda relate. The pain must be crazy too. I was deaf for a year but now have cochlear implants. This may be an option for AJ depending on his status.

[watersedge]

Hello Kim, sorry to read about your daughter, she is so young to have to face all this, it is so unfair on her. I hope things get better for her with the right treatment and doctors. Congratulations on your new baby, you have a lot going on right now and hope you are managing to get some rest yourself after giving birth, getting up for night feeds and with all the worry you must have for your daughter at this time.

[Sangye]

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 consultant a specialist.

That's great! You won't regret it.

I just commented about the 1,000 vs 10,000 because other readers might think they're being undertreated!

[Natalie]

Hi there sending some love to you and your daughter . tough times mate All the best and please keep in contact of your progress xx

[Al]

That's great! You won't regret it.

I just commented about the 1,000 vs 10,000 because other readers might think they're being undertreated!

Let's see....10,000 translates into early 3 gallons, so, yes, it apeared to be a typo....

Let us know if you find a specilist. I have a hunch that most specialists would recommend RTX, rather than cytoxan, especially for young women.

Al

[Jaha]

Kim,

Welcome to the forum. I'm so sorry to read about your daughter, getting dx at such a young age. This is a great place for any info you need. I wish your daughter and family all the best with her tx's and care.
Jana

[Psyborg]

Welcome to the forum, my daughter is 12 as well so I can only imagine what you are going through. I hope you find plenty of answers to your questions.

[HopeinTN]

Hello Kim. Thanks for posting your story. I sent you a private message/messages about being a fellow Vandy patient. I hope you, your daughter and your family are doing well. Good luck and you are in the right place for sure.

Katrina- Nashville, TN