Dysautnomia speciality clinics in the US

[momdi]

Thanks WI mom,

We were actually referred to Mayo by Mike's old EP from Chicago Childrens who is now at Wisconsin Children's. Dr. Janette Strasburger is way up north (sorry, don't know the exact town) but she comes to Milwaukee Children's once a week on Thursdays. We don't have a lot of experience with her - she first diagnosed Mike in Chicago in 1999 with a TTT. We tracked her down and tried to see her this same time last year, but she got stuck in the snow storm and couldn't make it. She arranged for Mike to see her colleague, who was very nice, but it's not the same. Anyway, she was kind enough, even with so little current info on Mike, to make the referral to Dr. Low. If you need a pediatric EP who knows POTS you might want to check her out.

Mike is 23 now and lives in Phoenix - we live north of Chicago. He's had symptoms since he was 8 years old (in retrospect, maybe before), and was successively misdiagnosed at Chicago major medical centers with tachycardia (partly true!), seizure disorder, and ADD.

As you know, it's so tough to see your kids sick. I'm a nurse, so add that guilt onto the usual Mom guilt.

Thanks for caring,

Dianne (Mike's mom)

[shannon]

Hi Corina,

I'm pretty sure Mayo Clinic would see you ASAP if you contacted Dr. Low's desk in neurology. When my local doctor called mayo for a referral, I had an appt with Dr. Low within a couple of weeks. Give it a try ---- Dr. Low is great!!

Good luck and take care!

[momdi]

Hi Shannon,

Can you share any specifics on your experience with Dr. Low?

What kind of tests? How long there? How did you coordinate his suggestions for meds with your local docs? What was the best part about seeing Dr Low?

Any suggestions for us? We're going Jan 16th.

Thanks,

dianne

(mom of mike, age 23, with POTS)