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crowebirds

Input Needed From Parents That Have Been To Mayo Pediatrics

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I wanted to ask the parents who have taken their children to Mayo clinic recently about who they saw. We just got our letter in the mail and found that our daughter is assigned to Dr. Erin Knoebel in the Department of Pediatric and Adolescent Medicine. What were your experiences with who you saw? Did you just see the one doctor or was this the primary physician and you had to see many? Does anyone have experience with Dr. Knoebel and do we need to know anything about her specifically before we go that will help us out?

Also, they are asking for things that were already sent to them such as the referring doctor's letter, her records and test results. Do I need to collect all this information and take it with me again? I know that it is the safest notion to do it again, but It is costly to get records from some of these places...again!

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We saw Dr. Renaud. She is a pediatric neurologist. She was fine. After she looked at our records and saw all the previous neuro workups she immediately sent us for the autonomic testing. We saw her after all our visits when we returned to Mayo for a follow up but our situations was we were there the week before Christmas, so it was hard to get into everything while we were there that week. If you have any down time and you want to try to get appts. moved up while you are there, you can check in at 8 and again after lunch (double check the times with the dept you are trying to get into) and they may be able to work you in. But you will see Dr. Knoebel as the primary coordinator of your daughters care. The pediatric Dept. is really nice and a different feel than the rest of the clinic (not that the rest isn't nice, just different).

If they send you for a cardiac exercise test I hope you get Dr. Allison. He was our favorite Dr. there.

If you want to PM me I can tell you more.

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I had Dr. Cannon a pediatric cardiologist. Seemed nice didn't have much to offer me but that just might be my case. The appointment didn't take long but was disappointed when I left because we didn't get anymore answers. I hope you have better luck with getting answers and the future!

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We saw Dr Fischer to see if there was anything else going on besides the POTS since my son is so sick. They redid a TTT, he had one 2 years ago in Cleveland. The TTT they did at the Mayo was only 10 minutes and just recorded the base rates, 5 minutes and 10 minutes. I didn't think the testing done at the Mayo was as thorough as what we had done at Case Western University Hospital in Cleveland. Plus, the testing was done while he was still on his medications. They only had him skip one dose the night before, so I think that could skew the test.

I brought all the medical records with me. I keep an entire set so I always have them and don't have to ask for copies repeatedly. After every test that is done, I get a copy of the disk or report.

Our experience may have been different since we already had a diagnosis of POTS and were just looking to see what else could be causing him to be so sick. His local POTS doctor was actually the one who requested we look for more answers. Our appointments were all well organized and went on time, it is a well oil machined.

Christy

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We also only had a 10 minute TTT. They did tell us that he should not have meds for 3 days prior which made it so we needed to stay over the weekend (which we were prepared to do).

Just be sure to write down ALL your questions, prioritize them, ask about tests and what they hope to accomplish. It could be you have more information as you discuss these things. Make sure you clarify contact protocol.

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Thank you! We were told that she either has DYS or Mito because she doesn't sweat. So far no testing has been done beyond her blood work. I am hoping they will do full testing. I realize that we may walk away with not answers at all, but I atleast have to try. Doctor's in our area won't treat her for anything including headaches or anything simple because her situation is too complicated. At the worst, I would hope that they could be a resource for her doctors when they are left scratching their heads.

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