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About Emily22

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  1. Showers used to make my daughter feel very faint. Now she uses a shower stool, grab rails and showers her legs with cold water before getting out of the shower. Only lukewarm water too. Makes such a difference.
  2. Thanks. Have asked for the tests and having some done next week.
  3. Anyone had adrenal testing? Does it affect the treatment for POTs? My daughter is getting an exceptionally high pulse rate at times and I’m wondering if she could be getting adrenal surges.
  4. Vagal manoeuvres eg Valsalva technique etc can really help. Also ice on back of the neck, drinking iced water, splashing cold water on face.
  5. Hi, also in the UK. My daughter has POTS. We saw many many hopeless doctors before eventually getting a diagnosis. There’s very little in the way of support or even doctors who will see kids.
  6. My daughter had a modified tilt test- much easier than the full test and the cardiologist said it was just as useful. No nausea either.
  7. We’ve seen so many supposed specialists ( paediatricians, 3 cardiologists, rheumatologists, several gastroenterologists) but still trying to get some help for my daughter. She has very bad daily stomach pain, with chronic nausea., slow bowel motility and gastric reflux. We finally found a good cardiologist, who diagnosed POTs and a provisional diagnosis of Supraventricular Tachycardia. Is it worth seeing a neurologist? What tests can they do?
  8. Yes she’s had an endoscopy. Thinking she needs gastric emptying study. Hey Dizzy - my daughter just seems to get more conditions. Which ones are you juggling? Do you have much experience with the gastric side of things? We’ve seen 3 gastros, 3 cardios, 3 rheumos. Have now found a decent cardiologist but not making much progress with the rest of the puzzle. Wondering if we should see a neurologist next.
  9. Hi GardenGal, She’s ok but it’s very stressful now that we have to rush to hospital when she gets an episode. What has your experience of SVTs been? Do you take beta blockers?My daughter has just started on Metoprolol.
  10. Hi everyone, just got used to the POTS and now my daughter has been diagnosed with what the cardiologist thinks is SVTs. Her pulse rate goes over 200. I am confused now as to which palpitations are from POTs and which from SVT. Scarily we have to go into hospital if it happens for longer than 20 minutes now. Does anyone get a pulse rate this high from POTS? Stomach pain is bad too. Now trying the low histamine diet but not helping so far.
  11. My teenage daughter has now been diagnosed with SVT as well as POTS. Her heart rate goes terribly fast - over 200 bpm. Am feeling confused and could do with hearing from anyone who has experience of these conditions. Thanks
  12. That was a quick reply Kim. I am so grateful for yours and everyone's support. I feel like I am in a crazy situation. It was bad enough when the doctors thought the CFS was all in our heads but I never expected the gastro doc to challenge both the POTs diagnosis and the reflux. Im not putting my daughter through an endoscopy just to prove to the doctor that she has reflux. He also said that a diagnosis of POTs was subjective,just a variation on normal and any link with stomach problems was unproven. My daughters heart beat goes from 100 to over 130 when she stands up! Hardly normal. She has low ferritin and low vitamin D. That's a good idea about the B12. I will see if they checked that. She's had a lot of blood tests which were all ok. The parathyroid was a little high though. Its fascinating how long food can stay around undigested. An X ray showed my daughter has moderate loading. Movicol helps a little. Unfortunately she can't have Donpridone because of family history of heart problems. I do think she has gastroparesis too.
  13. Hi Morrolan and Kimin. It's so good to hear your stories. Thank you Kim for your kind words. We tried yoga but it made my daughter's gastric reflux so bad. She can't bend without getting reflux pain or lay flat. I am going to take her for some very gentle swimming this weekend and see if she can manage. She's not keen though because whenever she's tried to exercise she's had palpitations but I'm hoping the new meds will help. Dizzy and Kimin - We had an difficult appointment with the gastro doc where he didn't appear to accept POTS and/or any link to stomach problems. This was despite him having the diagnosis from the cardiologist in front of him! I asked about gastroparesis and the gastric empying study but he just wants to do an endoscopy to check for acid to prove my daughter has gastric reflux. She has had reflux for years. We have now seen three gastroenterologists and are no further on. The first two just thought it was IBS or all in her head. She has had an endoscopy before because she had a very high Calprotectin test. We have tried PPIs, hypnotherapy and anti spasmodics. Wondering where to go next.....
  14. Hi, my daughter has been taking Ivabradine for nearly a week now. We've not noticed any improvement yet. How long does it normally take. The cardiologist just said to exercise but how with so many symptoms? I would love to hear from parents of other young people who are taking this med. Thanks
  15. Dizzy - I love your daughter's comment about her spoons being in the dishwasher! It's brilliant. She sounds funny and bright. It's amazing how much our kids put up with and still retain their sense of humour. We saw the physical therapist today, who also went on about exercise and walking each day. So my daughter did the squat exercise and got sick and dizzy. Everyone we see goes on and on about exercise and it's upsetting when you can't actually do it. This is why the cardiologist has put her on Ivabradine - so she can exercise. It certainly will have to be the tiniest steps - quite literally. It's all she can do to get into school part time each day. I wonder if we should have seen an improvement in her condition on the Ivabradine? Do you tend to see an improvement quite quickly if meds help your girls? What tests did your daughter have for the gastroparesis? We are seeing the gastro this week and I know he wants to do more tests. Eggs do seem to be easier digested than meat. I've been making everything non fatty for a long time and cook everything from scratch. The iberogast sounds good. I will try some. Sarah A33- Thanks for the welcome.
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