Granddaughter Has WG

[Jack]

The vagueness of the diagnosis is not at all uncommon and tends to be made on the basis of probability. ie. If the results of 3 tests are positive and 2 negative then the probability of disease X = so many % It is not the exact science that you would expect it to be!
Sounds like the treatment is working, so I would say that was good enough for now.

[Sangye]

I agree with what everyone has said. There are a number of rare autoimmune diseases with overlapping symptoms, all with the exact same treatment. This isn't uncommon, and is more of an intellectual difficulty than an actual medical one. Many tests (blood, biopsy) become more clear as the treatment progresses.

It sounds like they're doing IV chemo? So she wouldn't be leaving with that. And, she did have plasmapheresis, which can be very effective at putting the brakes on. It's also normal to begin decreasing the pred even though she's still very sick. You can't stay on the very high doses for long. I was only at 1,000 mg IV pred (the highest dose there is) for 3 days.

Having said ALL that (!!!) if her parents have any intuitive feeling that something's not right, they should insist on a VF consultation, or get Katie to a Vasculitis Center. We can get caught up in the info and tune out our intuition. And heck, even if they don't feel something's askew, asking for her docs to consult with a VF specialist would not be out of line.

[Grandma2Katie]

Hi Everyone,

Report today was good. Katie is out of ICU. She had her second plasmaparesis treatment today. Also, a definite diagnosis of WG. I am still a bit unsettled about the home treatment and will discuss this with Laura and David.

All in all though, things are greatly improved.

Cindy

[Doug]

I know children even younger than Katie can develop WG, but I've never had contact with any child with it, regardless of age. I hope you can maintain your Vasculitis Foundation contacts for advice. I hope you have gained sufficient guidance from this site, too, so that you feel a little more expert and a little more prepared for Katie's home challenges. Your postings will be great information for the next family member with a child with WG: it's new territory for this site, as far as I can tell, and the running narrative of Katie's admittance to the hospital through today, even, is a remarkable document. Have you had time to go back through it yet? Whew! Sometimes I forget that we are English, Canadian, Australian, and American on this site. That's a significant part of the English-speaking world. We can do a lot of good for Weggies around the world.

[andrew]

Well said, Doug. This will be a great journal for future parents/relatives of kids with the WG.

[Grandma2Katie]

I wouldn't have made it through this week without you guys. You have been great and have shared your stories and information so freely. Thank you from all of the Linders and Cravens.

Cindy

[Grandma2Katie]

Just wanted you all to know who Katie is. This is a picture of the whole family. Katie is the older and taller of the two girls. Her sister is Roxanne, 5 going on 25. A real catbird! That's Laura and David with the girls.

Cindy

[Doug]

Thanks for sharing!

(p.s. Pardon me for duplicating my thoughts, but I've been fighting Internet connectivity problems all day. I thought the remarks above were lost. Turns out I was just in a different part of the site trying to duplicate what I thought was lost.)

[Doug]

I just remembered another thing about the drug effects: food tastes a lot different. Maybe people still dealing with Cytoxin/Prednisone can amplify on this thought. After months of no appetite, then five weeks of medical treatments, I returned back to Nebraska with a voracious appetite. I decided to celebrate my return by ordering my favorite food, a taco pizza (don't ask! haw!). I barely made it through a small piece: it had a horrible taste! The next day, we had something for supper that I'd ordinarily pour lots of catsup on: catsup was my favorite condiments. Ugh! Another taste disaster. It turned out, after lots of careful eating over the next few days, that anything with tomato or vinegar in it just did not work for me! On a happy, if impractical note, chocolate and sweet tastes were just fine. Fruit and plain vegetables tasted OK. I still don't eat a catsup on much of anything any more (a good thing!). Most foods started to taste ok, if dull without herbs and pepper, after I stopped Prednisone, if I remember right, though the regain was slow.

If Katie was a fussy eater before, there is a good chance she will have new food issues after she comes home. Be patient with her if she complains about taste.

[crackers]

great news cindy.things are getting better but at the same time things are only just starting.make sure that they are monitoring her condition,and her meds, on a regular basis.wishing you all well.
john.