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About Christy_D

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    Advanced Member
  • Birthday February 13

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    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. My son's MCAS doctor prescribed Emend for his nausea a couple of years ago. It was extremely expensive and used for cancer patients so our insurance declined it and wouldn't pay. So unfortunately we didn't get to try it.
  10. This post reminds me of a T-Shirt I bought my son...he has severe constipation...so I bought him a t-shirt with a stick figure on it, and it said " I Pooped today". For him, that is a good day.
  11. Dynakids.org has very good print outs to give to the school. My sons school appreciated it when i printed it out for them. They gave a copy to each of his teachers. He graduated in May but his school always did everything they could to help.
  12. Kellysavedbygrace, The great thing about this forum is the wealth of information. If it wasn't for another member(MacksMom- Julie) on here encouraging me to have my son tested for MCAS, I don't think I would have gone that route. I bring some of this information, treatment options,etc.. to my son's doctors and have used some (IV Saline) that our doctor doesn't usually do. This is a great forum, even though some of it completely goes right over my head. Christy
  13. Issie, Doxepin does make him feel somewhat better. When he was on a very high dose --175mg -- he had a great six weeks(2 years ago) and then it stopped. Right when he started taking it some of his symptoms stopped, ie..licorice legs, itching, feeling hot(wanting to stand in the snow in shorts),etc.. We have weened him off twice and both times he got even worse(even when we didn't think it could get any worse). So, even though he feels horrible, he feels even worse off the doxepin. Thanks for the info though. Christy
  14. My son has also been told he is complicated(time and time again). So far nothing has helped my son. He is on H1 and H2 blockers, Gastrocrom, and doxepin. He is still feeling very lousy. He didn't feel any better when he started the anti-histamines, but maybe because he is already on a high dose of doxepin(100mg) and that has antihistamine in it. We may have to up his dose of that. His histamine level was 8, the high end of the scale when he was tested and that was with the doxepin in his system for 3 years now. Dr Afrin said it may take awhile to find the right medication, so we are tryin
  15. Hey. Had a question about Dr.gelmisky (the wife) Not sure if i spelled the docs name right lol but worth a try. Anyways saw ur post about how ur son saw both of them. I was told about the wife pediatric Gastro from my ped cardio at Duke Childrens, to go to for my stomach. The drive is far. Is she really good? And also I am 18 , do you know if she see young adults? And where she works at? I researched and I think she is at 2 diff locations not really sure. Thanks.

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