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Everything posted by Christy_D

  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.
  16. My son experiences the same thing, he calls it spaghetti arms. When it happens to his legs, he calls it licorice legs. It comes and goes, no rhyme or reason.
  17. My son was diagnosed with Silent Migraines. He started off with the painful headaches, nausea,etc.. Eventually he was left with the nausea and diagnosed with the silent migraine.
  18. My son was originally diagnosed by a cardiologist, but has always been treated for his POTS by neurologists. My son's neurologist was always willing to try new things. When I suggested IV Saline, he had no problem with it. A nurse came to our house and set it up so we didn't have to go to the hospital or doctors office. Unfortunately, it wasn't much help. It helped him for a day or two, but not enough to keep going through it. My son has POTS and MCAS. Here is a link about IV Therapy and POTS. Maybe show it to your doctor. http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/ Christy
  19. Clonzepam has been the most helpful medication for my son. It was prescribed to him by his MCAS doctor for his nausea. Like mentioned above, it can be addictive, but without it he was almost bedridden. He has been taking it for a couple of years now and it is still working. While he still has daily nausea 24/7, the severity is much less.
  20. 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.
  21. Perhaps also do a little research on MCAS(mast cell activation syndrome). While we kept trying to help my son with his POTS we didn't make much progress until we got to the root cause, MCAS.
  22. Hi Tyler, There is a really good doctor in St Louis, Dr. Laurence Kinsella. He is at St Claire Hospital in Fenton, MO. He is a neurologist. He is very well versed on dysautonomia. I hope this helps. Don't give up hope, my son was mostly bedridden for over 2 years before we found the right combo of medications and the right doctors that made him functional again. Christy
  23. Klonopin gave my son his life back. It helped his nausea tremendously, but it wasn't prescribed by his POTS doctor...it was prescribed by his MCAS doctor specifically for the nausea. It didn't cause any flare ups on his POTS at all. While he still has nausea, it has greatly diminished.
  24. My son has itchy skin when he gets hot or takes too hot of a shower. His is from his MCAS. It is better under control since he takes the antihistamines and other meds for the MCAS.
  25. My son used to get really weak legs, he called licorice legs. There were times he was unable to walk without his arms around me and my husband's neck/shoulders. He has also had heavy arms. He was diagnosed with restless leg syndrome as well. He takes Doxepin and hasn't had the weak legs since starting it in 2010.
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