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Posts posted by JuneFlower

  1. Therre is only one specialist in ny area in POTS and he won't see my daughter. I will sit down with the pediatrician and the neurologist and cardiologist to get someone to order stuff. Some of it is specialized, so certain drs may feel uncomfortable. This whole thing is a real nightmare. I am so stressed.


  2. Ok so have the total diagnosis and recommendations for my daughter from the dysautonomia clinic. I am so happy. They mentioned she probably has a Mitochondrial Disorder. They recommended 4 supplements. Is anyone familiar with this cause of POTS?

    They also changed stuff and made other good recommendations. Finally someone is suggesting Florinef. I hope it helps. Very scared local doctors will not follow through on these suggestions. Anyone have any tips about that?


  3. Ok so saw both drs today. They are so awesome . Feel so much better . Did not repeat tilt as her pressure was high in office today so maybe that's just a new change.

    Got treatment stuff to give to local drs. Just praying someone at home will order what they want.


  4. Yeah I kinda want to redo it but I don't know if the appt is available now. Plus I might have to changes flight. But this is our only chance to do this. I've read conflicting reports on how important the tilt test is. Her cardiologist disagrees with it. He says it does not add any info. But I don't know how educated he is. Ya know? He admits to being out of his element. Thanks everyone.


  5. They had to stop about 8-10 min in due to difficulty breathing and chest pain. I wasn't looking at her pulse. Was worried about the b/p being so high for her. And the fact that the test was not reflecting her normal values. The dr said we could repeat it in 2 days. But I just don't know now. There are do many things attached to her. It's a scary room. She gets anxious and I'm afraid the same thing will happen again. The dr didn't seem interested in her history or normal BP. Will meet with her tmw officially.

  6. Well seeing a specialist-the tilt table test was a bust. Daughter in so much pain that her pressure actually went up a bit but was never as low as her normal. Usually when she stands-her pressure goes to the basement. Dr offered to rpt in 2 days. Is it worth it??


  7. I don't have pots . My daughter does. (See signature). I will ask my lawyer when I talk to her. But the info should be on the disability rights website.

    I have chronic migraine and have chronic fatigue still. I don't work more than one day in a row and the day after work is a day of rest.


  8. I meant the schools that are public and K-12 have to follow federal law. Colleges may or may not be different.

    I am a nurse and I understand the clinical day. As an RN- I would not have accommodations at work. There is a certain level of physical fitness that is required for the job. I would not be surprised if nursing school clinicals are similar . I know nothing about physical therapy.

    I think getting healthy is a priority. It's not easy.


  9. Katybug had a great idea. I do work in that field but am not a dr. And I've never had a patient with POTS. Guess it's pretty rare. But I would imagine that during the actual delivery, your pressure would go up and faiting is unlikely. Many women can faint afterwards and this is pretty normal as long as it improves quickly. I think extra fluids are possibly a good idea….just not too many-too much IV fluid is also a bad thing. But they will watch the totals.

    I worry about all sorts of stuff when my daughter does it now. She always surprises me and is fine. I guess I would try not to worry. All moms worry about delivery and this is an extra stress in your mind. I try to remember what my cardiologist says. This condition is not fatal and will not hurt my daughter permanently. The real danger is her fainting and hitting her head. You will be in the hospital with all kinds of help when you stand. So try to relax and enjoy this beautiful experience.

  10. I do believe you can have a psychiatric service dog. In that case, one does not need to be physically unable to do a certain task...

    This is an interesting thread. I think the parameters are different in different areas of the world.


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