Granddaughter Has WG

[Grandma2Katie]

Hello Everyone. My name is Cindy. I live in North Carolina, USA. I joined this forum because my sweet, little granddaughter, Katie was just diagnosed with WG. She is only 7 years old.

In February, she had her tonsils and adnoids removed and surgery done on her nasal passages which had completely grown together. Her recovery has been slow. One night, she ended up in the emergency room because she was throwing up blood and blood clots.

She was referred to another surgeon and a hemotologist. After tests, tests, and more tests, the diagnosis finally came this week. Now the doctors want to biopsy the nasal tissue, kidneys and lungs.

None of us knew anything about WG until last week when the doctor suggested testing for it. We all have a lot to learn so that we can make informed decisions about what is best for Katie. So I am here to learn as much as I can from the folks that know best what she is going through.

My best to all here.

Cindy

[Sangye]

Hi Cindy,
My heart just sinks reading that your granddaughter is only 7 and has been diagnosed with Wegs. It sounds like they've only diagnosed it through blood work, is that correct? No biopsy yet? Is she on any meds? Where is she getting medical care?

I'm so glad you found this forum. Everyone here can give you lots of info and support. There's also a Yahoo group for parents of kids with Wegs. I don't know the group name, but you can call the Vasculitis Foundation. The group only allows parents (I'm sure grandmothers, too!), and the VF screens members for them.

[Grandma2Katie]

Hi Sangye. No, Katie hasn't had a biopsy yet. That should be scheduled on Monday the 23rd. She goes in for more blood work then. As far as I know, she is taking antibiotics for the strep throat she came down with and the supplement, folic acid??, to help increase her red blood cells. No treatment has begun for WG.

She is VERY anemic and has lost 15 pounds since Feb. 4. She doesn't want to eat. Food makes her nauseous. She has had muscle pains in her legs at night. Her sinuses are completely closed off and one side of her nose has already grown back together.

The doctors told my daughter they suspected either Von Willenbrand's or Wegener's. The test for Wegener's came back positive on Wednesday. So we are just getting started with this.

Anything that you know of that is essential for us to know when first starting out would be greatly appreciated. Katie is being treated in Charlotte by Dr. Eric Mayer. Her parents are very confident in him.

Thank you for replying......... I know there is a wealth of information and friendship here.

Cindy

[Sangye]

(I wonder why they're thinking Von Willebrand's-- that's a hereditary bleeding disorder. It only causes easy bleeding, but would have nothing to do with her sinuses closing off, etc....)

It's necessary to do a biopsy to confirm Wegs. Personally I've never heard of them doing a biopsy of sinuses, kidneys and lungs all at once. Are her kidneys involved? (They'd know from urine and blood work) If not, I don't know why they'd biopsy them. Usually they go for a tissue sample that is both easy to obtain and also the most likely to give the best result.

Have her parents tried giving her smoothies? They can add protein powder and other nutrients. Don't make them with ice or dairy-- hard on the stomach. For an itty bitty kid losing 15 lbs. is a lot.

Sorry to bombard you with questions! It's just that Wegs can move quickly and so many of us lost time with doctors who weren't familiar enough with it. It's very important that they do the biopsies as soon as possible. If it's Wegs, they have to start treatment right away.

I'll keep all of you in my prayers.

[Grandma2Katie]

The doctors will biopsy the nasal tissue first since the nasal passage has grown together again. Von Willenbrand's was ruled out before the diagnosis of WG. I can't answer your question about the lung and kidney biopsies. I'm four hours away and get all my info from my daughter.

One thing I read which is eating at me: the chemo drugs will make her sterile and it is recommended that steps be taken to preserve eggs or ovary tissue for later use before starting the chemo. Do you know anything about this?

How do you make smoothies without ice or dairy?

Cindy

[crackers]

hi cindy.first as a grandfather then as a WG sufferer my heart goes out to poor katie.have you introduced her parents to this forum? if not you need to do so.from personal experience,in a crisis,it needs grandparents to oversee the situation.it may be that katies parents are focusing on her and it may need you to focus on the docs to get the treatment that she needs as quickly as possible.don't take a back seat cindy,shout and holler as much as you want for katie.
john.

[Sangye]

It must be so frustrating to be far away, getting info secondhand. I bet Katie's parents are on total overload, too, making it even harder to keep you updated.

Yes, the chemo and sterility. A consultation with a pediatric oncologist is a must, because no one knows better than them what the options are.

You can make great smoothies using rice milk instead of regular milk. Rice milk is very easy to digest and doesn't create phlegm. (It's not a dietary substitute for milk, since it's made from a grain, but it is quite nutritious.) You can also use yogurt instead of milk. Much easier on the stomach, and might actually help it heal. As long as the ingredients are refrigerated, there's no need for ice. It won't have the same texture--more like a shake. Protein powders help bulk it up and will give her nutrients she needs.

Soups are a good option, too, just not the cream-based ones.

[Grandma2Katie]

Hi John. I have sent several email messages to my daughter, one containing a link to this forum but I will send it again. You are right..... they are distraught to say the very least. Since the diagnosis was only made on Wednesday and they don't have another appt. until Monday, I'm trying to wait it out to see what the next move is by the doctors. I have only been reading up on Wegener's for about a week and don't want to overload them with what I have read. I really would like for them to seek the info for themselves. I will push for a membership here. The best info comes from the people who live with it everyday!

Thanks for your input.... keep it coming!!

Cindy

[Grandma2Katie]

Sangye,

I would like to copy and paste your message into an email to my daughter. Would that be ok with you?

Cindy

[jola57]

Dear Cindy, my heart is with you and your family. How is Katie doing? This must be so difficult for her to understand. With the chemo, I'm with Sangye, seeing an oncologist is a must. If you have the time, read the posts, there are some members that also have had this since childhood and are still here. There are other ladies that have had children after being treated for WG. Please do not lose hope and let your children know that we are here for them as well as for you.
Sending warm hugs,