Help With Doctors In Denver Area

[dmadorin]

Hi -- new here and looking for help. For the last couple of years my 14-year-old daughter has been dealing with some of the same types of symptoms I'm reading about here -- and we are still looking for a diagnosis/treatment plan!

It all started when she hit her head on the top of the window well on her dad's truck, and the symptoms started the very next day (too coincidental for me, I think it's got to be related, but two ped. neuro groups in Denver have said no, nothing wrong neurologically, including one of the top pediatric movement disorder neuros in the country). We have confirmed (MRI) nothing structural wrong with brain, spine, or heart (recently saw a top ped cardiologist as well).

Help! Who do we see for this stuff -- as a pediatric patient? We've heard about Mayo in Minnesota and their autonomic/POTS program there, but it's a 15-MONTH wait. Seriously! We realllllly don't want to wait 15 months, but we're starting the process to get on the list just to be moving forward somehow. I've also read there's a Dr. Deal in Chicago, and will probably start pursuing that, but wondering if anyone has any information about that POTS clinic. Also, it would be MUCH easier to handle here locally, obviously. Has anyone pursued an autonomic/possibly POTS diagnosis in the Denver area in the pediatric realm?

Her symptoms: headaches (daily, come and go, several different spots/types, but NOT migraines, and they can't find a medicine that helps), hot/cold inappropriately, nausea, tummy pain after eating, chest pain, tremors (almost constantly when awake), weird numbness/restlessness in limbs/trunk, dizzy/lightheaded to the point of feeling like she's going to pass out but she can tell and bends down/squats down so she doesn't (only has fainted once or twice).

Sound familiar? Is the autonomic/POTS area something we should continue to explore?

Thanks for any help -- this has been a very frustrating journey and I definitely get the feeling the docs think we're nuts.

[dmadorin]

Forgot to mention fast heart rate -- example: standing in the kitchen talking with friends and it was 144. Cardiologist last week noticed it jumped up when she stood up (by about 30 beats or so) but then he dropped that issue when he said it was coming back down right away (but what would happen if she kept standing there for 5 or 10 minutes?). We are scheduled to do an exercise test with him next week, so we'll see what that shows.

[DBP4620]

Hi sorry to here about your daughter! I would reccomend calling Dr. Brent Goodman at the Mayo Clinic in Scottsdale AZ. I was 20 when Dr. Goodman diagnosed and treated me. The Mayo AZ is great have every speciality you can imagine but is not as big and overwhelming as the Mayo in MN. Dr. Goodman's personal secretary is fantastic and is very helpful in getting appointments sooner if needed. There typical wait is something like 2-3 months. They do have a full autonomic lab in Scottsdale as well. Anything else please ask!

[Sarah4444]

Sorry you are having to deal with this. I can't help you with doctors, but I do think I have read an article by Dr. Grubb which mentions POTS starting up after a head injury. Sorry I don't have the link, maybe someone else here does or you can find it with Google. It might help you with the doctors thinking you are nuts. So frustrating.

[dmadorin]

Hi sorry to here about your daughter! I would reccomend calling Dr. Brent Goodman at the Mayo Clinic in Scottsdale AZ. I was 20 when Dr. Goodman diagnosed and treated me. The Mayo AZ is great have every speciality you can imagine but is not as big and overwhelming as the Mayo in MN. Dr. Goodman's personal secretary is fantastic and is very helpful in getting appointments sooner if needed. There typical wait is something like 2-3 months. They do have a full autonomic lab in Scottsdale as well. Anything else please ask!

Thanks, but we've tried. He does not see pediatric patients, though I explained the situation, the long wait in Minnesota, etc. Nope, no exceptions. So very frustrating!