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Everything posted by JuneFlower

  1. yes a cardiologist told me there are different tilt table tests even within their field. Some are more involved with carbon dioxide measure and other stuff. June
  2. I looked up both tests and they are different. But aI can't really explain the difference b/c I don't know what the results would mean or why they have two kinds. But one seems to be ordered by a neurologist the (reflex screen) and the other by cardiologists. Now I'm wondering which one my daughter is going to have. Ugh. June
  3. congrats on getting a dx! I know how tough that is. My daughter's heart rate was just like yours until she started treatment. I hope they find the right mix of things to help you. She also was instructed to try salt and fluids ( not the protein though). Now she sees a nutritionist regularly who is pushing protein because she is very underweight. Good luck. June PS- 2 cardiologists told us decreased weight and poor nutrition play a key role in blood pressure management.
  4. Michelle, ADHD is a well known condition. Dysautonomia is not. But b/c she is on cardiac meds and passes out the lawyer said she qualifies under a heart condition. So not sure how they think they will get away with this…My school district is notorious for fighting this stuff. We are going to Childrens Hospital of Wisconsin. Thanks Corina, BigSkyFam, Christy and Michelle, June
  5. End of April but that is soon compared to some doctors. June
  6. We finally have an appointment for a specialist in WI. I am so relieved. I had to book a flight and hotel and car. I hope it is all worth it. At least if we go, I can say I tried everything. My daughter remains to ill to go to school. Migraines, stomach pain, nausea, severe insomnia, inability to gain weight and her BMI is way too low. Tomorrow we go to nutritionist to see if she gained enough weight. If not, she wants to hospitalize her. Sigh. I just want to cry. Also her school is fighting us on the IEP and we had to get a lawyer. June
  7. I am having legal issues with my daughter's school. But not that particular issue. They even have been supplied with a statement about her need to sit down to prevent fainting and they didn't say anything. But I wouldn't put it past them. I had to get a lawyer to get them to even consider an IEP. I would consult a lawyer to advise you. Good luck. June
  8. Yeah I don't want my daughter to have unnecessary tests. I need to speak with the dr about that 1st. So yeah they have no option for that. There's one dr left we have an appt already . Maybe he will be reasonable. June
  9. Chaos- Actually they don't appear busy as evidenced by them calling me back right away and scheduling her so soon for an appointment. They almost seem desperate to have my daughter become a patient. It's a bit worrying. Even though it is good not to have to wait, it makes you wonder how good the doctor really is. June
  10. Placebos are shown to help all people with any illness (even Cancer), IMO, so I wouldn't pay any attention to this. June
  11. yeah I know I could do that, but its the principle of the thing. That is not how a proper doctor conducts themselves. They should order the testing after seeing her. The Pediatrician is blindsided by all of this and I don't think it's right to ask her to order it. Also it speaks volumes for the way they practice. They have no integrity and are doing things in reverse order. I will most likely see someone else with her who will do things in the right order. It is already an adversarial relationship b/c they neglected to even tell me they would ask her dr to do this. It was embarrassing for me.
  12. If we are planning a whole trip halfway across the country, they could setup a pre exam and post discussion with the dr for the tests. It is just weird b/c they want her pediatrician to order the autonomic testing and that dr has no idea what they are talking about and it truly is unethical to order tests when you are unfamiliar with them. The specialist says they can't order them because they havent seen her yet and she is not a pt. The whole thing is like, "Who's on first?". Not impressed with them especially since I am willing to pay for the extra consult. June
  13. Anne- yes thank you. She literally does not go to sleep until 7am the next morning. She will nap a bit and then the same thing happens the next night. June
  14. well you are right. No one here can diagnose. The blood pressures are low but her pulses seems pretty normal. Everyone's pulse goes up when you stand but it recovers quickly, which hers did. I would be most concerned about the blood pressure and how she feels. I haven't looked up amitryptiline but I would check that it doesn't lower blood pressure. Other antidepressants can. (My daughter couldn't stand and was extremely dizzy on nortriptyline and amytriptylene.) Good luck. June
  15. no problem blobbydodger and i hope you feel better in all respects. June
  16. Well my daughter really went down hill when she was put on effexor. It causes weight loss and she is still struggling with that. Also melatonin can lower blood pressure and i think it has other problems. The doctors wanted her off of that too. But currently my daughter has terrible insomnia. Trying to find a non medicine fix. June
  17. So a certain dr at a certain childrens hospital is being annoying. They want my daughter to submit to a whole day of autonomic testing before seeing them and then see the dr. I have worked in medicine for 17 years. One rule of thumb is that you examine your patient and take a full history before ordering tests and such. I explain that to them and they sent me a list of what they want done for my review. I still have many questions and really they are questions for the dr. I doubt they will answer them on the phone. And some they couldn't answer without seeing her. So I emailed my questions. Bu
  18. honestly any of those b/p numbers are very concerning and warrant a trip to the ER, IMO. At least a call to your personal GP immediately and telling the office how high it is so they will put you right through. I already said this yesterday but the computer ate my post. I just want to say that waiting on this is not sound advice, IMO. Certain ppl may have a sustained high b/p and maybe their dr said it's ok (although I question that), but you have not been thoroughly evaluated yet so… Anyway good luck June
  19. eeek! Yes I would go to the ER right away. You might need some antihypertensive meds. And they will investigate the cause. Good luck. June
  20. Thanks so much. When we see the new dr I will ask about the test. I hope your son is well. June
  21. Ok this is a confusing diagnosis. There seem to be many types. I think some of you may be familiar with this. My daughter has some but not all the symptoms. She has itching, flushing, redness, abdominal pain and migraines and headaches. So anyway if anyone has advice about this. Should I request a test? What is the test? June
  22. ok kJay - that's what I thought.
  23. Yes Christy- that is what I am thinking. They have neuro and GI and cardiac there at Dr. Chelimsky's hospital. June I am glad to hear that your son is so much better. I hope it continues! I don't know about the MCAS but I think my daughter might have something else cause she gets very red and flushed and has chest pain.
  24. i'm so confused about hyperadrenergic pots. I watched a video by Dr Blair Grubb about it. He said you should suspect this type when a person has very flushed and hot skin all of a sudden with possible hives and a sudden increase in heart rate and dramatic drop in blood pressure. But other places, I have seen ppl here mention high blood pressure. Does anyone know which it is? June
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