anybody been to mayo?

[mopinko]

my youngest is going in july. she has chron's, which has been difficult to treat. also has fibro, and autonomic dysfunction. struggling with depression as well. few other oddball things.

just wondering if folks have any advice, or can recommend good restaurants in rochester, or....

[demtenjeep]

1. we went years ago for the hubs. We stayed at a place that had Famous Dave's BBQ attached to it

it was in walking distance to the 3 different places that we had to go to for his throat.

There was also a nice bus service that went to the mall and there were tons of places to eat at the mall.

There were several nice resturaunts downtown, but I don't remember much about them and this was probably 7 years ago.

[demtenjeep]

2. I would be curious as to the Crohn's treatment

I have been having infusions for about 3 years now. I am on the shortest time span allowed with the maximum dosage allowed with Solucortef in addition. I am afraid that we will be hitting a wall soon and I don't know what will happen. I do believe that I would be dead without the infusions.

[mopinko]

3. are you talking about remicade?

when kiddo was dx'd this was a last ditch rarely used treatment, but these days it seems to be nearly frontline treatment. i will be very curious what they have to say.

[demtenjeep]

4. yes, I was started on it 3 years ago

I used to take it every 8 weeks, but it wasn't working, have been in the hospital 8 times in 3 years. Doc has me on strongest dosage and every 6 weeks now and it may not be enough. I don't know what will be the next "fix"

[mopinko]

5. eeesh.

so sorry. it sucks so bad to be sick.

[demtenjeep]

6. yes it does

and it is extremely exhausting to be in pain all the friking time

[Ms. Toad]

7. Ironically, we were there on the day you posted this

Victoria's Restaurant - wonderful, and they have a gluten free menu.

We were there for a medical conference. My daughter has had ulcerative colitis (since age 4) and now has primary sclerosing cholangitis as well. Make sure your littlest is having regular liver function tests. PSC is much rarer with crohns, but there are a number of people with crohns who have it.

I can look up the gastroenterologists who presented at our conference, if that would be helpful. We didn't actually have any medical visits while we were there.

[mopinko]

8. weird.

i am sure at this point we get who we get. sure it will be fine.
she is my youngest, but not little any more. just turned 19. mostly leaves me out of these sort of things now, but several days in a strange place, you can still use a mom. with a credit card.

[Ms. Toad]

9. Mine is 21

With medical things, we're still attached at the hip.

At 18, we were separating very nicely and she was taking over medical care, then PSC hit and we're back to intensive parenting. Mostly only for medical care - but due to restricted course offerings, my summer duties include crawling into bed beside her at 6:00 AM and pounding on her every 5 minutes until she shakes off enough liver fatigue to get up for her refresher chem class - then playing barista so she doesn't feel the need to stop at Starbucks (the former is necessary, the latter is either a gift or saving my pennies since the disease makes it impossible for her to be self supporting). PSC stinks - she slept 12 hours last night, and it still took her 35 minutes this morning to crawl out of bed. Too bad chem is only offered at 8 am.

[mopinko]

10. well, here we are.

got here sunday, saw the doc on monday, super ct scan yesterday, colonoscopy tomorrow, results on friday.
must say there is nothing much to the town of rochester. lots of hotels and restaurants around the clinic downtown, but not much else. we are on the outskirts, since we brought the security dog.
mostly keeping my nose out of things, walking the dog, and chauffeuring back and forth.
bored silly.

[hedgehog]

11. Thinking of you today and hoping for the best!

[demtenjeep]

12. the hubs says he will take me to Mayo for my Crohn's but I tell him I don't think anymore could be

done.


What did the results of your daughter's tests show?

[mopinko]

13. found here guts to be great (tho slow) but

also found widespread arthritis. they tested for several types and got nothing, but xray showed spine and pelvis deteriorating. this is all they xrayed. they suggested she come home and get some pt.
she saw her pain guy today, but i haven't talked to her.

but we are both pretty cheesed at the way she was treated. she is on several psyche drugs, and i think they saw her as a drug seeker. no idea why they didn't call in a rheumie.
might send her back to see a rheumie, but will see what happens with the pain guy.

really not an acceptable answer for an old lady like me, let alone a 19 yo kid.
one more depressing trip through the old medical industrial complex.

[hedgehog]

16. If they weren't willing to send you to one of their rheumotologists

after seeing X-Ray evidence of a problem, what were they thinking!?!

[mopinko]

17. they were thinking

that she was taking a lot of psyche drugs, and was drug seeking.
or at least that's how it looked to me.

[mopinko]

14. seems to me you might be eligible for the bone marrow trials.

you seem to have enough trouble with it.

[demtenjeep]

15. I hadn't thought of that, I will talk to my GI doc next month if I don't see him before then

I definitely have not achieved "remission"