Granddaughter Has WG

[Luce]

Sangye, I am always amazed at your level of knowledge - a brilliant resource for everyone and I applaud you for being so willing to share your wisdom!

Yay Katie, so glad she's home!

[Doug]

YouTube - Bunnies, 1

http://www.youtube.com/watch?v=_DVmqx__BEg

This one's for you, Luce! (I'm not in it....)
This two's for you, too, Luce!

[Luce]

Doug, thank you for the links but YouTube is telling me those videos aren't available in my country!

[Doug]

Too bad! They had to do with rabbits as pets, and how they are as intelligent as cats and dogs, etc.

[Sangye]

Thanks, Luce (4 comments ago)-- I had excellent training as a biologist and then as a chiropractor. Everything I have to share is due to all my teachers.

[marian]

Hello everyone

This looks like an appropriate thread for me. My grandson was diagnosed last August at the age of 14. He had not been feeling well for months, and various doctors had come up with various reasons: mono, whooping cough, and then pneumonia. As spring turned into summer, and he spent more time sitting on the players' bench rather than playing his usual robust games of basketball and then baseball, all the time experiencing horrible coughing fits. I knew something was far more wrong than the doctors suspected. But, it took until August for his parents to finally agree to my demand that he be admitted to a hospital until someone gave him a definite diagnosis. Even then, in the children's infectious disease ward of a big teaching hospital, most of the doctors were perplexed. By that time, my grandson was a very sick child. Finally, one resident uttered the term Wegener's. I happened to be at the doctors' station when she said it. I saw at least six doctors who had been in and out of Patrick's room look up wide-eyed. They all started racing for their various computer screens. Minutes later, after I went back into Patrick's room where I was spending the night, two doctors came in and told me they were pretty sure of a diagnosis...enough that they wanted to start him on massive doses of prednisone, along with two units of blood. They said the could not afford to wait for an official diagnosis.

Within two days, they had their test results back from the Mayo clinic, Patrick was feeling perky, and his color had returned. He was back home in three days. He was relieved that he didn't have cancer (he told me he thought he was dying of cancer), but bummed that he'd been on medication for a long time.

By late September he was playing football and this spring he was back playing baseball. However, when his hips started hurting, the doctors suggested he not do things that would be painful.

The problem with being a grandparent is that we have more time to study all the effects of the disease and the medications. The parents tend to want to not discuss things with me because they know that I worry too much.

Meanwhile, I think that Patrick has a tendency to hide some of the problems he is experiencing (both emotionally and physically) because he doesn't want to bother his parents.

Meanwhile, we've been playing golf and yesterday he laughingly told me that the lab technician botched his bloodwork yesterday.

So, he is taking it all in his stride and is living his life the way his doctors have suggested...that he's just like any other kid except he's on medication.

He has always been the sweetest kid...the youngest of three boys. His oldest brother is very carying of him, while the middle brother still beats up on him.

I want to be able to talk to Patrick to see if he has cares, concerns, fears and if he'd like to communicate with someone his own age (I have found another 14-year old). But, he seems to be doing well without anyone discussing it with him.

Thanks all for listening...i mean reading...

Marian

[Jack]

Hi Marian,
Sorry to hear about Patrick, how is he at the moment?
I'm sure that I won't be the only one on here who will be advising you that he needs to see a specialist, most doctors have little idea about the control of this disease. What medication is he taking? Prednisolone alone will probably not be enough to maintain remision and the long term effects are not good.

[marian]

Hi Jack

Thank you for responding. A rheumatologist at Dartmouth-Hitchock center in New Hamphsire is in charge of Patrick. He started out on prednisone and cytoxin but has been off both for several months. The doctor put him in charge of his medication and he is very careful and thorough in taking everything. He has been on methotrexate once a week ever since he stopped taking p and c. He also takes folic acid. He seems to feel quite well, except his hips started hurting during sprints in baseball practice.

I guess what I question is the difference between his parents' attitude and my own. I guess that difference stems from the fact that they are dealing with their young son, while I am looking at the disease as a whole.

They do not want anyone in town thinking of Patrick as "sick" Patrick, so nobody discusses it, although his teammates all knew that he was on medication for "something" and that his face swelled up.

I would like to open up the discussion and spread the word about Wegener's and autoimmune diseases. The disease has been very rare, but it seems to me that there is a lot more of it now. One man in town who has an autoimmune disease claims that he can make his condition flare up simply by going to the golf course and coming in contact with the chemicals that are sprayed on the greens. I have been taking Patrick and his brothers to play golf since they were little more than toddlers. Is this just a coincidence? I'd love to know more. I sometimes watch golf tournaments on TV and I shudder when I see a golfer stick his tee in his mouth!!!

I do defer to his parents' wishes and I have never been an interfering grandmother, so I mostly keep my thoughts and findings to myself. But I do want to keep Patrick and his parents as fully informed as I can about so many issues of Wegeners. I want Patrick to take it all seriously so that he will know how to handle any issue that seems out of the ordinary to him. I would like them all to attend some vasculitis conferences, but they say they will wait until Patrick is ready for such events.

By the way, his rheumatologist has one other WG patient. But she is in constant contact with specialists in Boston and Cleveland.

It's really hard to know the best way to handle the condition in such a young person.

Thanks again for your response.

[Jack]

It all sounds like good news to me. An early diagnosis, no permanent damage and now in remission with little in the way of medication.

I understand your concern about his condition. You obviously know that it is potentially a very serious disease and flare ups after remission are common. So long as he is aware of this and is prepared to act at the first sign of problems, there is little more you can do. The cause of the condition is still unknown and I've never heard of anyone being able to stimulate flare ups. I've read many papers on the subject, but they all seem to rule things out rather than point at potential causes.

[jola57]

Hello Marian, I too have never heard of flareups being stimulated by anything. The young have much more resiliance than us. It is a life long illness but one that fortunately can be handled. You are a caring grandma and one day he will know that for sure. For now I guess I would let him be just a boy, the time may come when that will end and he will need your support but for now keep his illness in confidence, he has enough teenage angst without additional baggage. Let him enjoy carefree happy days without all the baggage of having to go to meetings, symposiums and such. One day he may want to know more and if you continue to gather information for him you will be there with it when he needs it most.