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  1. Nope, never heard of those two things. Will have to keep track of this symptom. Thanks for your help!
  2. Now the circulation is definitely something to keep in mind. It has happened but once so not sure if related to POTS or something else. You all are so wonderful!
  3. Nope, no Florinef, but thanks for your insight.
  4. OK, hate to start everyone's morning with this topic, but we really need help. My son seems to be on an every-other-week, excessive bowel movement schedule. One week fine....pooping normal. Next week (like this week), it will start on a Monday and he is having soft BMs for hours each morning. By afternoon, fine again. This will go on for 3-4 days. This morning I gave him some Imodium...I'm at a loss. This is his last week of high school classes (finals next week, graduation on May 29). Stress is adding to this too I'm sure! Last fall we did have motility testing done and he checked out fine. He is drinking a couple small Gatorades a day, along with lots of water. Any ideas?
  5. Rachel, Thanks so much for insight on painful feet & peeling fingers. I am planning on calling Dr. Grubb today for an appt., but need his contact info. Do you have it handy? Thanks! Donna
  6. My son does get very painful feet after exercise. He experiences lots of abdominal pain....if he eats after 8 p.m. Of course, the migraines.
  7. Definitely sounds activity-induced for your son too. Did he find anything to relieve the pain? It eventually does go away for James, but would be great to find another option for more immediate relief.
  8. Thanks all for the input! Yes, I just came across Kawasaki's but he doesn't, thank heavens, fit the profile for that. I will check the link provided too. So wonderful to have this amazing resource for us new POTS families....thanks!!!
  9. The frozen ice bottles are a great idea ~ thanks!
  10. Just wondering if anyone suffers from this issue. The skin on my son's 10 fingertips will all peel at the same time. No pain, just really odd.
  11. My son experiences very painful feet when running. Anyone else have this symptom? Any suggestions to relieve the pain? Thanks!
  12. Good evening everyone! I share the same sadness & frustrations as all of you...my 18 year old was diagnosed just 3 weeks ago after nearly 24 months of being sick & misdiagnosed. Through this time, he has been so scared, and angry, and frustrated, and just about every other emotion you can come up with! When he was feeling most isolated because he wasn't able to go to school, I invited his very close friends in for a visit. Amazing what a little laughter can do! We also sought out the help of a therapist....he really needed to share his emotions ~ particularly the anger ~ with someone other than his dad & I. We are also going to start some biofeedback therapy at the beginning of June. Our son was on some very strong meds during the misdiagnosis time with the goal of disconnecting his gut from his brain ~ yikes! We are lucky enough to have access to a psychologist at University Hospitals in Cleveland that is a holistic practitioner that has a special interest in teens with POTS. He will be working with our son on some strategies to pull the brain & body back together.
  13. Evening All! We are new to these forums...our 18 year old was just diagnosed with POTS 3 weeks ago after 21 months of doctors, tests, hospitalizations, and multiple misdiagnosis. I have run across the name of a Dr. Grubb on these forums....with mention he is in Ohio. Can someone tell me who he is, where he is in OH, and what his role is in all of this? Thanks for your insight and knowledge of POTS...we are learning so much from all of you.
  14. My son was on Amitryptilline for 18 months ~ during a portion of his misdiagnosis period. I would never have him on it again! He totally lost his affect...he was not the child that we knew. Almost as if he was hiding inside a shell. He was agitated, always on edge, lethargic, and had a general sense of not caring. Additionally, though he was not diagnosed at the time with POTS, the symptoms that he was experiencing that we now know to be caused by POTS, were not helped in the least...if anything, things were worse.
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