new member w/13 yo wg daughter

[JanW]

What rings of her trachea are involved curly? Does a thoracic surgeon do dilations, or is it something else?

Definitely get a second opinion if you ever are advised to go the laser route. As I mentioned on here before, my ENT says people that do that end up with multiple surgeries per year for the rest of their lives. It is only a last, last resort when the tissue cannot be handled any other way.

[talentx7]

Hi Curly, where are you in Ca and where is your daughter being treated? I am in So. Ca and my son is being treated at UCLA.

[Sangye]

she weaned herself down on her pred w/o telling anyone until she started having respiratory distress again. .

Curly, I'm sure you and her docs have educated her about how a sudden drop in pred can trigger Wegs, but I just want to make sure she understands the risk of adrenal failure, too.

The adrenals become dependent on the pred, and suddenly stopping or tapering them too quickly can cause acute adrenal crisis-- fatal within 24 hrs if not treated. The stress done to the adrenals makes it more likely that she'd have to stay at higher doses or even become permanently steroid-dependent. Armed with that knowledge, I'm sure she'll never do it again.

[talentx7]

Sange,
Our doctors are starting to talk about starting to lower Carters pred. He has been on 60mg since may 15. When they start to lower, how do I know if Carter is having problems with his adrenals?? Carter dosen't like to say he feels bad because of the fear he will have to go to the hosp again.

[Jack]

Adrenal problems due to Pred withdrawal seem to come in at around the 10 - 15mg dose for many. However, a Wegener's flare is also a danger and that can come on much earlier. It will often be in the form of a recurrence of the original symptoms, but not always. Adrenal problems are less specific and you tend to feel tired and generally unwell.

[Sangye]

Jack's got it right.

Unless they're complete idiots (we've seen a few), the docs will know how to taper down from 60mg safely so that it doesn't cause adrenal problems.

Early signs of adrenal trouble:
- Unusual sleepiness-- can begin the 1st day at a lower dose, but might not show up until the 3rd day.
- Symptoms that look like hypoglycemia (low blood sugar)-- shakiness, irritable if meal is late
- Chills
- Diarrhea
- Extreme weakness
- Unusual tearfulness, depression
- Responds to emotional or physical stress by bursting into tears, and/ or developing any of the above symptoms

If this happens, call your doc immediately for directions on what to do.

[talentx7]

Thanks Jack and Sangye,
I will look forward to the day, I can start monatoring him for those symptoms, although he gets VERY cranky now if he gets close to missing a meal.

[jeriorleans]

My son, age 13 was diagnosed in August of 2009. He has complained of joint pain for years, pediatrician said it was growing pains. He use to get bad spells where he would say "everything was going fast". Those went on since he was about 10. Suddenly in Feb. of 2009 he got an ear infection. First one ever. ENT kept saying he had chronic ear infections. Put tubes in his ears in the office without anesthesia. We left that quack. Started getting weird blue marks under his skin. Went to the dermotologist who said its just blood under the skin, no worry. Ear aches started again. Went to a new ENT who put new tubes (they had popped out after two weeks) while in surgery. During the surgery she noticed the granulation in his nose and ears (he had chronic nose bleeds). She sent this to be biopsied and that is when the diagnosis was confirmed. He also had fatigue and weight loss. He lost most of his hearing and now had bilateral hearing aids. I thought the world was over. But after 4 months of cytoxen and 60 mg of steriods, tapering he is a new kid. The steriods were rough. Kids can be so cruel and the weight gain and moon face were devastating to him. He is now on methotrexate and you know what, he is away at camp right now. He is doing great. I still worry. He has lost about 20 pounds in two months and of course I worry. Is he just growing? Is it starting all over? Doc says all is okay. He was ANCA negative once but he is positive again. Health system in New Orleans is horrible so we travel to the Emory Clinic in Atlanta. Everyone on this site gives great advice, but unfortunately with a child its different, only pediatric rheumotolgist can treat them. But know this, she will get better. The young are much more resilient then us old guys. If you ever want to talk you may call me, 504-621-6141

[Sangye]

He has lost about 20 pounds in two months and of course I worry. Is he just growing? Is it starting all over? Doc says all is okay. He was ANCA negative once but he is positive again.

That's very concerning. Twenty pounds for a 13 yr old is a lot of weight to come off. Can you attribute the weight loss to anything? How much did he gain on the pred?

Have you called your Wegs doc to ask about it? When you're on the Wegs drugs, a flare can often be much sneakier.

[jeriorleans]

worried to death. Wegs doctor says its puberty