Throat Closing

[maria garcia]

Has anyone felt like there throat is closing? What can this mean? Im so upset the ENT. is not taking my daughters symptoms serious, her pedetrician says its normal to have stuffy nose and sore throats every month,(crazy) Her Rhemat. just goes by what the other doctor say. And everyone is over looking her Auto Immune disorder. She will be having blood work this weekend and we will have to wait two weeks for results. Im so dissapointed the Rhem. Just wrote blood panel for Anca's in the script!Instead of doing a full one to check for swelling and her organs. I called Cleveland clinic but they only see adults over 18. Im having this problem that very few RHEMAT. who see children. Here in Miami there is only one. How to find if her symptoms are truly from a flare without doing biopsy or if she even has Wegeners or Vasculities is flaring. The Ent did not want to do Biopsy bcse enough tissue was not going to be able to remove.

[NicShaf]

Maria,
I have not experienced this myself, but I believe it is a sypmotom of Wegs. There is a whole separeate area for threads on Traeceal Stenosis on the home page. I would go though a couple of those until someone else chimes in with more helpful information.
Best wishes to you!

[elephant]

Marie I think there are some Rhuematologist the specialized in Pediatric for Wegeners...It in Alanta, Georgia, the hospital is called Emory. You may want to google it and call them.

[Sangye]

Maria, Dr Seo (Johns Hopkins) told me he will see patients who are "at least in double digits age-wise." The sensation of throat closing can be due to many things, including allergies. It could also be due to a very swollen sore throat, especially if her tonsils are larger than normal.

[vdub]

we will have to wait two weeks for results
I know this doesn't help you much, but two weeks?! Absolutely ridiculous! My lab work, with the exception of urinalysis and testosterone, is back in an hour. I would really press that issue. Maybe go to another lab. Even when I'm on the road in our RV, I have never had to wait more than overnight for the results and I get blood work every two weeks, so I've been to labs all over the country. Also, you should be able to pick up the results yourself. Some states don't allow it (those are the stupid states), but most do and you can read the results yourself. The only hazard of that is that you aren't a doctor so don't read too much into the results.

Has your daughter been positively confirmed to have wegs? I would think that whoever dx'ed her with wegs would be all over anything that pops up out of the ordinary, particularly someone so young.

[Sangye]

vdub, your docs must be ordering your labs Stat. Most labs take at least a day, and many of our tests take several days.

[JanW]

I think that ANCA takes about a week at my lab, and everything else back in a couple of days under normal conditions.

[vdub]

No, not STAT. They are just normal routine. We have two hospitals just across the state line from each other and they work very closely and effeciently. They have a "runner" going from one hospital to the other all day long.

A week ago, I was sitting in my endo's exam room and she says "I wish I had ordered such and such". I can't remember which test it was now, but I told her if they had any sample left, I could probably call and get it. I did. I had the result in about 15 minutes. They ran it right then.

Of course, some tests, physically take longer, but the vast majority come back within an hour.

[WeggieParent]

Cleveland clinic but they only see adults over 18.

We found an amazing pediatric ENT and rheumatologist at Cleveland Clinic who see my daughter (16yrs old). Dr. Krakovitz is the ENT and Dr. Stephen Spalding is the rheumatologist. They both specialize in Wegeners and seem to know everything there is to know. I can't brag on them enough! Dr. Krakovitz scoped her sinuses in his office and talked to us in length about how to handle WG and what to watch for. He scheduled a bronchoscopy the next morning at 5:30am! We drive 14 hrs every 6 months to visit with them and Dr. Spalding will consult with our local doctors in between visits on conference calls.

I understand your frustration. Our local ENT doesn't seem to take my daughters WG seriously either but Dr. Krakovitz sure does! I hope you can get to Cleveland Clinic. It's a wonderful place.

[delorisdoe]

It is my experience that blood work may only take a few hours but unless you call and ask you will not get your results until your next appointment. This is what I read into maria's two week comment. I wonder if the "stat" makes it so that the doctor gets the results quicker.

[Psyborg]

Maria,

I'd try contacting the Doctors in WeggieParents post directly.
Doctor Spaldings information is on this page: Steven Spalding, M.D. - Rheumatologic and Immunologic Disease, Cleveland Clinic (http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=7924)

He ONLY sees Pediatric patients so you should not get that same run around.

[maria garcia]

Where is the Cleveland Clinic located? The one I called was in Fl.




We found an amazing pediatric ENT and rheumatologist at Cleveland Clinic who see my daughter (16yrs old). Dr. Krakovitz is the ENT and Dr. Stephen Spalding is the rheumatologist. They both specialize in Wegeners and seem to know everything there is to know. I can't brag on them enough! Dr. Krakovitz scoped her sinuses in his office and talked to us in length about how to handle WG and what to watch for. He scheduled a bronchoscopy the next morning at 5:30am! We drive 14 hrs every 6 months to visit with them and Dr. Spalding will consult with our local doctors in between visits on conference calls.

I understand your frustration. Our local ENT doesn't seem to take my daughters WG seriously either but Dr. Krakovitz sure does! I hope you can get to Cleveland Clinic. It's a wonderful place.

[Psyborg]

Ah...ok didn't know you were trying that one. Cleveland Clinic is in Cleveland Ohio, so maybe not the easiest solution, but they will give great care if you can manage the trip. UNC is probably the closest vasculitis center to Florida, but I'm not sure what Pediatrics people they would have.

[Psyborg]

I have no actual knowledge on these, but here is a page with with information on groups that offer free flights for medical care for Children if the price for such is too prohibitive for the family. I don't know your situation there, but wanted to offer this option if it might help you:

Airline Flights (http://www.ped-onc.org/resources/airlineflights.html)

That resource is for cancer patients, but I'd guess that the situation for a vasculitis patient is close enough that they'd have some say.

[drz]

I ask the local lab to fax my results to my doctors outside the local clinic and to mail me a copy. I can pick them up in the afternoon if I wish to make another trip to the clinic. My rheumatologist posts the lab results on their web site for with a program called "my chart" and it is usually on there the same day unless his nurse gets too busy. The mailed copy arrives the next day and I put this info into my my PDA with a Medical Chart program so i can track them. Some tests though like the ANCA and Azathioprine enzyme test have to be mailed to certain clinics and these take much longer.

[vdub]

I ask the local lab to fax my results to my doctors outside the local clinic and to mail me a copy. I can pick them up in the afternoon if I wish to make another trip to the clinic. My rheumatologist posts the lab results on their web site for with a program called "my chart" and it is usually on there the same day unless his nurse gets too busy. The mailed copy arrives the next day and I put this info into my my PDA with a Medical Chart program so i can track them. Some tests though like the ANCA and Azathioprine enzyme test have to be mailed to certain clinics and these take much longer.
Excellent service! This is the way it should be....