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paona

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  1. If you are using one of the centrally acting alpha-agonist hypotensive agent like guanfacine or clonidine it's very important to consult a pharmacist about the interactions of the 2 meds but also consult with a specialist that understands about those that have high norepinephrine levels to start with. I agree that this situation needs to be under the guidance of a professional because I think potentially it could be very unsafe if not monitored.
  2. I believe the anxiety thing is a copout go-to-response for some doctors. My daughter's doctor brought it up in response to hearing about her heart racing, which was documented in a holter monitor test and the poor man's tilt table response test but she wasn't diagnosed at the time. When she was 16 she was diagnosed at the Mayo Clinic with POTS and this doctor when presented with the same information from me, said within 5 minutes I think this is POTS. He then ordered further testing which confirmed it. My daughter did not have any anxiety at the time. I was in the hospital over a year a
  3. Agree about starting the florinef first since it should bring up the blood pressure some and this will be needed before starting the beta blocker. My daughter is 17 and also had blood pressure even lower than yours. Her blood pressure still runs very low even with the florinef but the florinef helped her be able to tolerate lower doses of her beta blocker and the combination has greatly reduced her symptoms of POTS.
  4. Did they do his heart rate lying down, then sitting, then standing? My daughter had her first ECG at age 7 years because she told us her heart was beating so fast and along with this she had nausea and looked very pale. Her ECG was normal lying down and we didn't know to have it tested while she was standing for a bit. We figured she had a rather benign inherited tachycardia that some family members had. We didn't do any further testing but had I known about POTS I would have. She did not receive holter monitor testing until age 15 and it did show tachycardia but nothing more was done.
  5. I'm putting a link to a site about Irlen Syndrome: http://irlen.com/index.php Like your daughter, my daughter has had very weird visual distortions. I know she had weird auras (from migraines without pain) since at least age 4. She had terrible visual perceptual issues from a young age and we did visual therapy to try and help this and help with her conversion issues. The therapy helped some but her light sensitivity kept increasing and I ended up homeschooling her through the middle school years because of her numerous perceptual issues. She still was very advanced in school but struggl
  6. Just add on the new diagnoses. You don't have to address what you were initially given the disability for just say the symptoms remain and include the new diagnoses. I think if you are very detailed they might not even contact your doctors. If you are seeing someone separate for infertility I wouldn't even list that doctor. If for some reason that becomes an issue you might need to document the supports that would be in place to allow you to parent and how the daily routines at home might be managed but not the demands and structure of work. It probably won't be an issue. If you feel co
  7. Timely discussion since my 17 year old is home today and probably tomorrow because of increased sensitivity to light/sound, auras, a bit nauseous, and an ongoing dull headache. She had migraines that we know of since age 4. These were usually painless, accompanied by vomiting, and auras. At that time we could usually trace the reaction to a higher naturally occurring high salicylate food. When she went dye/preservative free and low salicylate she had fewer migraines. We also think she started having POTS symptoms around age 7 and then the migraines increased again. She wore Irlen lenses
  8. Doozlygirl, Sorry you have these sensitivities/allergies as well to salicylates. Being sensitive/allerigic to dyes and preservatives is a challenge but being off them would probably be beneficial to most people. There is more pressure being put on the FDA to consider the studies done on the risk of dyes to all children but especially those with compromised systems. I think it was about a year ago that the FDA finally agreed to hear from scientists and parents about the mounting evidence of concern about food dyes. Very interesting how the major food companies in the United States make
  9. My 17 year old with POTS is on the Feingold diet which is an elimination diet with 2 stages. She is allergic to dyes and preservatives, and had great difficulty with medium and higher salicylate foods until more recently. Her first very noticeable reaction came at 18 months of age. She was a colicky baby but with continuous tweaking of her diet she did okay. The reaction at 18 months was probably due to a preservative and she had hives the length of her calves which were followed by dime-size hives covering her body. For her higher salicylate foods gave her migraines, icky behavior, and vo
  10. My daughter had a few episodes of losing time while in class. She said she would hear the beginning of a lecture and then the end but couldn't remember anything else said or done during the time period. When she was being evaluated for POTS last May at the Mayo they asked her how much time she thought had passed that she couldn't account for. She said about half an hour. She felt that she was not asleep but had a sort of passed out feeling but remained seated in an upright position. The Mayo told us that in her case since it was a half an hour of time that it was most likely related to he
  11. This is a forum with both accurate information and generally great support, so it's good you found it. My daughter was diagnosed with POTS at age 16. This formal diagnosis was done at the Mayo last May. By age 7 years she was reporting to us the feeling of her heart racing but since she was not standing or sitting no changes showed on her ECG. Two other direct relatives had tachycardia around this age as well but never mentioned any other symptoms or ongoing treatment and seemed to outgrow it. Our daughter also had all the symptoms you mentioned for your daughter plus many sensory issues
  12. I can't speak from my own experience since I don't have POTS but can tell you a little of my daughter's experience with medication. She had low blood pressure even before starting meds, not much different than what yours is on medication. She was started on fludrocort for the low blood pressure until she was diagnosed. She was put on metoprolol tartrate (beta blocker) for the tachycardia. She has done well with her meds and felt mostly benefits. After a few months her resting heart rate went down to the mid to upper 40's (not her usual) and her blood pressure dropped to 80/40 sometimes wh
  13. Well, I do think this can vary from state to state even though it is a federal program. So I think you have to check your individual state. I maybe wrong on this but what I have seen happen with others seems to be services like rehabilitation services, private duty nursing (again might be limited but is individual case by case), physical and occupational therapy, and transportation services would be offered. Sometimes this would be in home, but some services you have to show that you are homebound (this doesn't mean you never leave your home but can show that being transported is difficult
  14. Just got back from pre-op examine for her surgery on Thurs. Just wanted to let others know instructions that were given by her primary physician to help her get through surgery. First he said to now start having her drink lots of gatorade or pedialite (she can't because she's allergic to dyes but we use Electro Mix packets in her water). She already drinks 12 cups of water a day but he wanted her to get extra electrolytes. He said that it was very important for her to take her metoprolol tartrate (beta-blocker) before her 7:30 a.m. surgery so she is to have one sip of water and take this.
  15. My daughter is having a minor surgical procedure done next week and will be put out for 45 mn. She will not be opened up so will not have that added stress to the body. I came across an article on general management of general anesthesia in a patient with POTS and will bring a copy of that with to the hospital. They are aware that she has POTS and it is a hospital with an excellent reputation. They said a nurse would be calling a few days before and the anesthesiologist will talk to us before the surgery. This is the site of the article: http://www.ispub.com...a-syndrome.html I will be t
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