We're Going To New York!
Posted 01 February 2008 - 06:49 PM
So I finally got up the courage to book an appointment with a juvenile scleroderma specialist in New York (we're in California). I have been putting this off for 2 years now, but finally decided it was time. I made the appointment for March 25th, and my daughter and I fly out on the 23rd. We're going to turn it into a mini vacation, so she doesn't associate New York with doctors for the rest of her life. This was a huge decision for me--part of me is so afraid that the doctor will tell me something that I don't want to hear, as I know he is a fan of methotrexate and more aggressive treatment. Jordan's other doctors seem so sure that her localized/linear scleroderma will run its course, then burn out. Her rheumatologist thinks she can even go off her Plaquenil without her sclero returning or progressing. Is anyone on this site a NY local who can maybe give me some advice as far as navigating the Big Apple??
Posted 01 February 2008 - 11:24 PM
I dunno about NY but when I was going to Chicago my hubby gave me a whole stack of one dollar bills from the bank. I thought he was silly, but no he was right on. We didn't rent a car, so between airport shuttles, hotel, and eating it was handy to be ready with tip money.
Good luck & keep us posted,
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 02 February 2008 - 12:32 AM
great news! I know it can be really scary trip, but probably you'll get some answers you've always wanted to hear. Sclero specialist knows better than normal rheumatologist. I'm surely not from NY (Europe, Finland, haha) but I bet you'll find out the ways and it'll be a trip worth of all the panicking and stuff.
Posted 02 February 2008 - 10:50 AM
So glad to hear this, and I hope all goes well. Although its frightening, its so important! I'm sure everything will be okay and you will have a fun trip, some mommy-and-me time! Please let us know how it goes.
As for the navigating, can't help you there, I'm up in freeeeezing Canada!
Posted 02 February 2008 - 03:11 PM
Posted 02 February 2008 - 06:32 PM
I understand anxiety with taking one more opinion. My personal opinion is that Scleroderma and related disease are very complex and it is beyond capacity of one or two doctors to understand your daughterâ€™s complete case. I would not hesitate to take multiple opinions and try to understand each doctorâ€™s view points. Do not hesitate to ask tough questions and donâ€™t be discouraged by any opinion. I always write down all my questions before I go for an appointment. I believe every doctor is looking for the best for the patient.
When my local doctors told me that I was too complex case for them and suggested me to go to UCSF in San Francisco, I was very impressed with their honesty.
Posted 03 February 2008 - 04:38 PM
If you are going to New York city, don't worry. I have been there many times and navigation is very easy.
I wouln't rent a car there, traffic is bad. You can walk, take taxies or just take the subway.
New York has also gotten a lot safer than what it used to be.
Enjoy your stay there. It is a very fun place.
If you have any question, just ask me.
Posted 04 February 2008 - 03:04 AM
I am almost a pro at navigating NY! My daughter sees a specialist there too, but for chiari malformation not sclero, and I have been there many times for visits and surgery. Are you staying in the city? If so and you need a cab, the doorman at the hotel will get one for you. There is a ton to do there. Right in times square there are tons of stores that kids love. I'll Pm you withthe details!
I'll actually be there but at the beginning of March. Hope everything goes well.
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Posted 05 February 2008 - 07:25 PM
Posted 06 February 2008 - 10:57 AM
Your plans sound terrific! It will help to have these distractions. Best of luck to you with the doctor's visits. Be sure to let us know how everything went once you are back.