Mom on a mission

[Manic momma]

Hi all. I'm looking desperately for answers. My story is long, but thankfully I sense you all understand long stories. I learned of granulomatosis two days ago and kept reading off and on all day and night. My daughter is 18 and is in chronic kidney disease. She was told my her optamologist to research mixed connective tissue disorders because her eyes are in very bad shape. She's treating them with some kind of eye ointment. She has been very poor at follow through on her kidney issues.
Ive tried to encourage her to keep appointments but she thrives on denial. She, however is not even why I was researching to come across this mysterious disease. I actually have an ulcer in my nose, going on 18 months. My lungs have been getting progressively worse. One week ago I developed a nasty cough that I couldn't shake. So to the computer I went. I began under auto immune disorders and added my chronic sinusitis and then my crusty nose and a few other lovely lesions. Well, a bit less than two days and I found you all here. Now I'm a rural girl where the streets get roled up at 11:00 pm. But not for me.....I want to have my daughter tested for this. Once I began to research I asked her to list her health issues (as if renal failure and ee inflammation isn't enough). She fits right in. Except she has no real complaints regarding shortness of breath. Oh, and I want her tested RIGHT NOW!
we live in USA, IL.
PLEASE TELL ME WHERE WE GO, WHAT TO DO AND REMIND ME AGAIN THAT THIS IS NOT GENETIC.
Thank you all who are willing to help~Leslie (AKA) Manic Momma

[mishb]

Hi Leslie, I'm so glad you have been doing your research but sorry you had the need to.

I'm from Australia, so I can't actually point you in the right direction for specialists because I'm not sure of the graphics of where you are situated.
If you are near a Mayo Clinic or John Hopkins or even the Cleveland Centre then you couldn't go wrong.

You can put a word into the search engine and find related threads about specialists or even about things that may concern you.

There is no genetic link that they know of for Wegeners, however I so know of a grandparent and grandchild and also a father and daughter that both have wegs. There is also a current thread talking about family members with the same condition.

I'm sorry to hear about your daughter. Is she on a transplant list or (fingers crossed) things have got that far?
In regards to Wegeners for your daughter, a simple kidney biopsy would be able to solve this for you.

I also have Mixed Connective Tissue Disease and my reds eyes were cleared up with steroid drops and then prednisone cleared them totally.

There are many auto immune conditions that have similar traits in regards to the crusty nose and the sinusitis and cough. Do you also have joint pain.
My GP has tested my two children as they also show some signs and symptoms but they do not have WG.

I hope someone will be along shortly to offer more help in regards to where you can find a specialist.

Take care ...... both of you

[Manic momma]

Thank you Michelle, maybe I can rest a bit easier. I do indeed have joint pain, however, I have a genetic disorder called Ehlers Danlos Syndrome. I was very contented in believing that I had Sjgorens and add that to my gastroperesis narrowing sinus, osteoarthritis, totally repaired brain aneurysm and COPD. I thought I had maxed out my limit.
But, for my daughter, I have to know. And as you can see, I'm not going to sit by passively. She refused to get the biopsy last year and I didn't push. She refused her 24 hour collection up until last week and she has delayed her updated cretanine level. She was in second stage at time of dx. She is anemic. She is a teen still and seems to believe that if he ignores her symptoms their just gone. Admittedly, I taught her some of that. I will be checking back in here throughout the day. Your words have given me enough comfort to rest for now. If and hopefully when we find that she does not share in this very difficult disease I will give you an update along with my happy dance. Again thank you for some sense of ease.

[pberggren1]

Where are you located Leslie?

[drz]

Cleveland clinic or Mayo might be two best bets to get evaluated for any strange unknown or undiagnosed disease that could be GPA or some thing related.

[Debbie C]

She definately needs to get checked right away,many people on here can tell you your kidneys are nothing to mess around with.Don't want until she has to end up on dialysis. Good luck and keep us posted

[Barbara N]

Hi Leslie, I'm so glad you have been doing your research but sorry you had the need to.

I'm from Australia, so I can't actually point you in the right direction for specialists because I'm not sure of the graphics of where you are situated.
If you are near a Mayo Clinic or John Hopkins or even the Cleveland Centre then you couldn't go wrong.

You can put a word into the search engine and find related threads about specialists or even about things that may concern you.

There is no genetic link that they know of for Wegeners, however I so know of a grandparent and grandchild and also a father and daughter that both have wegs. There is also a current thread talking about family members with the same condition.

I'm sorry to hear about your daughter. Is she on a transplant list or (fingers crossed) things have got that far?
In regards to Wegeners for your daughter, a simple kidney biopsy would be able to solve this for you.

I also have Mixed Connective Tissue Disease and my reds eyes were cleared up with steroid drops and then prednisone cleared them totally.

There are many auto immune conditions that have similar traits in regards to the crusty nose and the sinusitis and cough. Do you also have joint pain.
My GP has tested my two children as they also show some signs and symptoms but they do not have WG.

I hope someone will be along shortly to offer more help in regards to where you can find a specialist.

Take care ...... both of you

Leslie, you must be one of the strongest women I know. I know a parent will fight to the end for their children but you seem to be getting it in bigger doses than most. Who helps you to help them? do you have a good support team?? Best of luck and keep up the courage, the children need it and so do you.