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Christy_D

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About Christy_D

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  • Birthday February 13

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  • Gender
    Female
  • Location
    St Louis,MO

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  1. My son gets itchy, but he also has MCAS which is the cause for him.
  2. If you are willing to make the drive, Dr Laurence Kinsella at St Clare Hospital in Fenton,MO is a very good neurologist with many POTS patients.
  3. Where in Illinois are you located? I am in St Louis and there is a very good doctor(neurologist) who is very in the know about POTS.
  4. My daughter has EDS and POTS. A neurologist diagnosed her POTS and a geneticist diagnosed her EDS.
  5. My son was diagnosed by a Cardiologist, but has always been treated by a neurologist. His main symptoms have been GI related, nausea, abdominal pain. He did have delayed gastric emptying. If you are near Milwaukee, Dr Gisela Chelimsky (pediatric gastroenterologist) is a great doctor. She is well versed in POTS.
  6. My son's psychologist said she gets a lot of patients referred to her for anxiety because the doctor can't figure it out so it must be mental. After the 2nd visit and getting all of my son's symptoms, some I didn't even know about because he thought it was normal for everyone, she did the leg work and research the doctor was unwilling to do. It was validation from her that it was not a mental issue. Tell your daughter it could be more ammunition to prove against the anxiety diagnosis.
  7. The same happened to my son and the psychologist agreed with us that it was not anxiety and was a physical problem. Our psychologist did research and recommended seeing a cardiologist about POTS. My son's main symptom is nausea, so I would have never thought about seeing a cardiologist. While a cardiologist diagnosed my son, he has always been treated by a neurologist(they diagnose POTS as well). I will also say, the psychologist was helpful in giving my son mental tools on how to deal/live with his condition.
  8. My son went there when he was 16. He also doesn't have pain. Nausea is his main symptom. They deal with a lot of POTS patients giving them tools to help live with their lives with the hurdles that are presented. I will say, as a parent I didn't subscribe to everything they wanted the parents to do. But I listened and decided what was best for my son, not necessarily what they decided what I should be forcing him to do.
  9. While my son did not throw up non-stop (but was diagnosed with cyclic vomiting), he does have POTS and mostly GI issues. Dr Gisela Chelimsky in Wisconsin is a pediatric GI dr who is well versed in dysautonomia. Her husband is a neurologist who is also well versed with POTS. My son had seen both of them when he was first diagnosed. She was the nicest most caring doctor we have ever seen. We had to travel far to see them, but well worth it.
  10. How old is your child? I happened to come across his email address and emailed him directly before making the appointment. He said he would see our son. I had to tell them when I scheduled the appointment that he agreed to see us. I know he has seen other pediatric patients, but I'm not sure how young he goes. I referred another patient to him who we met at the Mayo Clinic and he got in as well.
  11. Dr Thomas Chelimisky is in Milwaukee. My son was seen by him when my son was 14. He is now 22. Dr Laurence Kinsella (St Louis) is our current neurologist and he started seeing my son when he was 15. If you go to the Mayo Clinic in MN, we saw Dr Phillip Fischer.
  12. My daughter has had this happen a couple of times. Her doctor said it isn't really a seizure. It was described more like her system was doing a 'reboot'.
  13. My son's doctor is very well versed with POTS/Dysautonomia. His name is Dr Laurence Kinsella at St Clare Hospital in Fenton,MO. He definitely knows his stuff.
  14. At one point my son's chest pain was so excruciating, the doctor gave him a shot of prednisone. It calmed everything down quite quickly. The chest pain did not return, at least not to that extent.
  15. My son's number one complaint is nausea. It was so bad he had to stop going to school in the 8th grade(he is now 21). Nausea is still his worst complaint, but not as bad as it used to be because of medication. He has POTS and MCAS. His MCAS doctor prescribed him clonazepam. It has been the most helpful medication for his nausea, and he has tried just about everything. He was also diagnosed with gastropareisis, but a couple of years later he was retested and no longer had that problem. Zofran did not help at all for him.
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