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crowebirds

We Got The Call Today.

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We received a call from the Mayo clinic today. TLC will have her appointment the week of March 13. Hopefully the year and a half wait will be well worth it. She has developed a lot of new issues/symptoms during that time, I hope all of it will help.

We will be traveling for over 15 hours. I am sure the snow will make it longer. She is allergic to cold, so we need to minimize contact with the outside as much as possible. Any tips/pointers would be greatly appreciated.

Any parents of children that went, any pointers you may have regarding preparing the child for the trip would be appreciated too.

Thanks,

Robin

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Hi TLC's Mom,

I just returned home after an almost 2 week inpatient stay at Mayo for severe autonomic dysfuntion neuropathy most likely autoimmune. It seems like you will be getting your testing outpatient. There are probably some things I can help you with but the inpatient and outpatient experiences are pretty different. Please feel free to ask specific questions if you have any or PM me if you would like.

Some tests are more invasive than others but the odds are very good that you will leave with answers. One thing I suggest is keep a notebook with you at all times. You will see so many doctors and they are in and out so quickly. Make sure you are writing down notes as they talk and also any questions you need answered before you leave. I was given several new diagnosis' and I was pretty ill due to some organ shutdown so I did not really get a lot of my questions answered. Most of the time I was inpatient I was alone because my hubby was home with the kids.

Be assertive and remember that YOU are the advocate and you and your child are the customer. Be polite and professional and you will get better results but you have every right to demand the answers you are paying for.

Please ask for anything specific about tests!

Jen

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We were at the Mayo for most of October and a week into November with our 16 year old son. One week of testing and 3 weeks at the Pain Rehab Clinic for POTS. If you can get into the Ronald McDonald house, your daughter can connect with other kids with dysautonomia/POTS. That was the best part of our visit to the Mayo; the friendships he formed with kids just like him. They skype daily and are still very close.

Christy

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If you can't get into the Ronald McDonald House, which is an excellent idea, there are hotels that connect underground right to the main Mayo Clinic building. It's darn frigid in MN this time of year, and for us it was worth the money to stay in one of hotels that have a tunnel connecting it to the clinic. They have quite an underground system of tunnels where you can find food, pharmacy items, and shopping. You can just roll out of bed, get ready, and be there in minutes. We bought groceries and cut way down on our eating out expenses by utilizing the fridge and microwave in the room. The longer you stay, the cheaper the rate...Now if I could just remember the name of the hotel! If you're interested, PM me and I'll find it..We were there for about 10 days.

Yay that you're going soon!

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We stayed at the Ronald McDonald House as well and ditto on it helping your child with meeting others with autonomic disorders. You can't reserve your time at the Ronald McDonald House but if you choose to try and stay there call them as soon as you arrive and they can get you on the list. It is usually a 1 or 2 day wait to get in but you will receive a voucher for a reduced rate at many of the hotels while you wait for an opening. The Ronald McDonald House was nice because my daughter has unusual allergies and I had to prepare all her food so it was wonderful to have lots of our own refridge/freezer space and everything available to do food prep with. Also the Ronald McDonald House is so kid-oriented no matter the age and there are many treats, presents, and activities to look forward to that help with distraction. They also invited us to one of the meals even before we were able to get in there. The Kahler Inn and Suites is connected to the clinic through the indoor walkway. I stayed there with my other daughter and it was very nice as well.

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We stayed at the Staybridge Suites. There is a shuttle that runs hourly (and half hours, too) and picks you up at the door and drops you off at the door of the clinic. Also, the staybridge has heated underground parking, and during the week they were cooking something for dinner so you didn't have to cook (complimentary) like chili, chicken and dumplings, that kind of one dish meal. They also have kitchens and two rooms. With my son's anxiety it proved invaluable to have the two room suite. Ask for the Mayo discount. That said, the Ronald McDonald house sounds really great and wish we had looked into it.

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Well, our trip was last week. We ended up staying at the Kahler Inn and Suites. The weather was nice, no snow, but we still took advantage of the tunnels. We had a very good experience with all but one doctor. TLC was diagnosed with Dysautonomia despite normal testing. My daughter had taken her heart medicine the evening before the test with out telling us before hand. Her doctor asked her if she had taken anything and with a yes, the doctor was able to confirm the diagnosis based on the what she could see both in person and in pictures. Her beta blocker has been changed to one that targets epinephrine. This will help with her anxiety issues that are triggered by the DYS. She was also diagnosed with restless leg syndrome and hypermobility. With proper orthotics, TLC should be able to prevent additional sprained ankles. What we thought was cold urticaria was actually autoimmune urticaria. According to the allergy doctor their are no further treatments available. After I got home and did further research into it, I found that there is two other options--need to research further. We received more support for her migraines and severe acne. No answers were available regarding a connection between the two "rare" conditions.

Though several conditions were confirmed, two were changed, and one new diagnosis, we were still left with more questions than answers. But now I know where to look for answers. We should receive a write up next week on the trip from all the doctors and those doing the tests. We were offered the Pain Rehab Clinic, but unfortunately will have to wait to participate in that three-week program until after I have been with my new job a little bit longer. If I had it all to do over again, I would. Having some answers is better than having no answers.

I appreciate everyone's support.

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Glad you have more answers and a direction to go. It's a time consuming, painful process - but, it's always a sigh of relief to figure even one piece of the puzzle out.

Issie

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