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Everything posted by JuneFlower

  1. I will look into Dr. Grubbs but we are thinking of Dr Chelimsky or Dr Boris. Trying to decide. The cardiologist dx'd her with hypotension as well. She has no blood pressure at all when standing without meds. And its not much better with meds. Not sure if she will grow out of this. June
  2. no she has no one good at school to help. The nurse is mean and often doesn't let her call me. The guidance counselor is now being adversarial because I requested an IEP. The teachers are generally not understanding and constantly have to be reminded of the 504. You may have the answer lejones 1. Thank you so much. Also I agree she may be scared of feeling bad physically at school. I will talk to her. Rachel- she won't even go for one class. We tried that. SHe's been given all the speeches about cancer kids already. She still refuses to go to school. June
  3. yes I'm not surprised about the lyme test. Mine was called borderline positive. Our infectious disease specialist here at the hospital feels that Igenex reports everyone as being positive for lyme. He doesn't put any stock in their lab. Interesting. Not sure if I agree. I still have CFS. June
  4. my daughter often looks as you describe. I'm sure it is less oxygenated but when you check a pulse ox you are reading the central reading, not the lips. June
  5. Blue- Well I understand what you are saying and I'm sure some of that could apply to my daughter. But she gets sick before she goes to school. She refuses to go 95% of the time. She won't even give it a chance. Soskis- Yes hormones could play into it a bit. But she is not being pressured and has about 1/20th the workload of her friends. Not sure how it could be stressful unless it is in her head. She is in therapy and so far no progress but I have hope for that only. June
  6. Thnx-no she does not have food allergies or celiac disease. I think she is afraid of school. But it's hard to take her symptoms seriously when they only happen during the school week. June
  7. So I know stress probably doesn't cause low blood pressure but my daughter is mostly ok on weekends and is sick all school week. Migraines, stomachaches, vomiting-mon thru fri. So frustrating. June
  8. Generally you would see your dr after 3 days if diarrhea in an adult. That said you should be drinking fluids that whole time. Good luck. Recently I was sick like this for 10 days and saw dr. Tests were ok. I got better . It's a bad winter for germs this year. Feel better. June
  9. my daughter gets this a lot unfortunately. It comes in cycles that last a few days. June
  10. Rachel- yes it sounds like a feasible option for some. As I stated earlier, in CT, there is no free K12 online high school. We only have 3 tuition based schools. Thanks, June
  11. thank you guys. I guess it's worth ruling out. June
  12. My husband is convinced my daughter could be sick from mold or some other bad thing in our house. He moved us out and we are testing the house . Also I have migraines every other day and my son who is 11 now has headaches about 5 days a week. We had a problem with mold before and had it all cleaned. At that time I had status migrainous( a migraine for 2 months). Anyone heard of pots having an environmental cause? June
  13. so were you happy with her experience with the online program? Congrats to her for going to nursing school.
  14. it can but usually not as much as the epidural. The needle is much bigger for an epidural and it goes in a different place. I think it might be a vasovagal response that happens. The spinal needle is much smaller. I don't remember hearing it happen with a csection but with POTS who knows?
  15. Interesting ok. Yeah I thought it was weird and related somehow. Thanks. June
  16. Elena- ok . He or she may say it isn't something to worry about ahead of time. In which case, I'm sure they are right. But at least you know. And happy pregnancy.
  17. My daughter has been sweating a lot this last month. Also her hands and feet are always clammy. I've read that the QSART sweat test is looking to see a lack of sweating. So is this not a symptom of POTS? June
  18. CT- they have 3 private (tuition based online schools) All 3 have terrible reviews. And actually one is based on the K12 ones so I'm not sure I'm too confident about them. Did you use one?
  19. sorry didn't answer your question. The pressure can totally bottom out- be unreadable for even normal people. But they bounce back with IVF and meds. It happened to me when I had a spinal tap so I don't think it is related to meds per say.
  20. Wow- not sure if anesthesia will give an epidural if its that's low. But maybe…I would ask OB for an anesthesia consult prior to delivery to discuss options in both a vaginal and surgical birth. They should know about your pressure so they can plan. There is a med they give to rapidly raise the pressure but I can't remember right now. Ugh. Good luck anyway. Everything will be great! June
  21. Aimes- The epidural can make a lot of people's pressure bottom out. It is a very common side effect unfortunately. We usually can control that if it happens with IV fluids and sometimes some meds. (Happen to me twice and I don't have POTS). I can also see how even a vaginal delivery would make POTS flare but I think it would be less than major abdominal surgery. Also you would have a lot less pain meds to worry about. June
  22. Ok I am a registered who has 17 yrs experience in Obstetrics. I work day in and out with new moms. Your GP is so wrong, IMO. There are so many reasons why a csection is more risky for mom and baby. You can actually see it in the mortality rates for both. But also in practice , less admissions to NICU, less pain and gas and faster recovery for mom. Some people who should not push. -history of aneurysm or other similar thing. Severe back orthopedic problems could potentially cause an issue. My daughter has PoTS and lie blood pressure and I would never encourage a csection. Your obstetrician know
  23. sorry you had to do this. You may have a Spinal Headache from the spinal tap. Easy to tell. If the headache goes away when you lie down and comes right back when you stand, you can be sure its a spinal headache. Two treatments: time and fluids and sometimes caffeine helps. Or the blood patch. That will fix it right up but involves another procedure-very minor. Good luck. I've had all that and the headache was the worst. Also I take care of pt's with the epidurals all the time so I see this a lot. Don't rule out the other ideas on here though and be well. June
  24. Yes I filled out all the necessary forms. They are just @%$#'s. So they finally sent them. And dr called back with results and she does Not have Addisons which is a relief but also means she probably has Dyautonomia and it is responsible for all her problems. I'm not happy about this as it hard to treat. Dr stewart will still take 3 weeks to schedule our appointment. Getting really sick of these specialists. Keeping an appt on the books for a guy in PA just in case Stewart turns out to be a dud. Christy-great idea about the binder. I had thought today that I will request copies for myself also
  25. So my daughter has been vomiting and not taking fluids for 2 days. One more day of this and I will have to take her to the ER. The endocrinologist did blood work but the secretary won't give results over the phone. Supposedly we have to wait for 2 weeks. Not happening. Mama bear came out, and I was like, she needs to call me with what she has so we can get this possibility of Addisons off the table. She was so rude even after I explained that my daughter is so sick. I asked would she tell me over the phone if there was an issue, and she said no, wait 2 weeks. I almost want to drive there and m
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