ACsMom

DD was sick last week with strep and what we think was scarlet fever (yeah, I know. But the little one dd babysits had been diagnosed with it a few days before). Her heart rate (I have my new nifty pulse/o2 meter) was all over the map but mostly above 100 and even flashed up to 185.... and laying down, too. When I took her in to see the doctor, I mentioned to the nurse that she'd get a better picture of what was going on if she took a laying and standing bp and hr. She looked at me and proceeded to take a sitting bp and hr. Whatever. The following evening we went to the ER per the doctors after hours recommendation because of a really, really bad raw throat and the need to drink, etc. They took bp and hr in all 3 positions without me saying anything. Of course, it looked really good after pushing in 30mg of midodrine in 7 hours prior to the ER visit. They gave her an IV anyway which helped keep her hydrated overnight. Would you insist that the nurse take different measurements? DOES it make a difference in a doctors evaluation? How do you do that gracefully? Dealing with POTS/OI/NMH.... I think it's easier to unhook an eel from your fishing line.

Thanks! Now. Just what does "underage and records sealed at age 18" mean? And what will the new "electronic records" push with the new health care law do to our desire to move on from an unhelpsul doctor or health system and see another professional with a "clean slate"? Call me skeptical.....paranoid...... What do you say in an addendum? To you reference tests/doctors notes who have supported the diagnosis, etc.? I just requested the release authorization form from the health complex and will stop by the family doctor clinic this afternoon to request records. At least I'll know what she's been up against. Thanks again.

My daughter had a very difficult time getting diagnosed with both POTS and EDS. There was much skepticism in a large medical system that is near us. Only the geneticist was kind, considerate and knowledgeable. He just didn't want to rush into a diagnosis and then have her forever labeled with "that" and have doctors unable to see beyond "that". So he did not make a definitive EDS diagnosis when he saw her 2 years ago. (she was diagnosed with EDS last year at another facility) But the ortho, sports med???, cardio, pain management..... We have a strong sense that she was dismissed as possibly 1- lazy or 2- drug seeker or 3- attention seeker. And I was probably not written up very positively either. One dr. diagnosed her as "that" and the others who saw her seemed to have followed along lock step in their assessment. Unfortunately, our family dr. followed their thinking as he read their notes. When I last saw him and handed him the TTT, etc. results, he murmured that POTS was so hard to treat. This facility is less than an hour away. The other possibility that may have competent help is 1 1/2 hours away. DD wants to write off the above facility. Forever. Everyone in it. Period. Can you change your medical records if misdiagnoses are in it? Can you make them change wrong characterizations? Should I look into getting records with the family doctor changed, too? I don't know how important it is and will be for her future medical needs and disability if it ever came to that to have those records standing as is. So. Experience? How-to's? Thanks again.

Thanks again for your responses! My neighbor is letting me borrow her oximeter for a couple of days. Fascinating. DD babysat a 2 1/2 yo Sunday mid afternoon for a couple of hours and then again that evening. The little one fussed and screamed and cried for an hour as her dad was getting ready to leave. DD couldn't even put the girl to bed because of the shear exhaustion that hit her so I helped with that. She did PT yesterday and had to go slower than normal. She crashed in the car on the drive home and again at home, napping for the first time in 3 weeks since starting Effexor. I used the oximeter and my BP cuff. BP was ok. Rate was ok. O2 was ok. But I noticed as she was awake/half asleep that the rate would vary 10 to 15 bpm.......62 up to 71 down to 63 up to....... dysautonomia, right?? Or maybe its EDS fatigue. Or maybe it's........ I know that POTS/NMH causes fatigue. I know that EDS causes fatigue. I understand that some believe that the 2 are intertwined and some link them both to CFS. Can you become symptomatic dealing with a demanding toddler?? I suspect that little kiddo was the icing on an enjoyable 5 days. Nothing dramatic but something went on each of the previous days. Folks mention the importance of pacing oneself. I didn’t think it had to be done so gingerly. So, I ordered an oximeter and 2 books that will address EDS and also the POTS/NMH components. I am flying blind here and simply need more resources on hand, including this great board. I need to have a better understanding of what's going on and I need to walk thru the reality check that this is going to be more complex than putting a SpaceX Falcon 9 into orbit. ie. mom can't fix everything. At least not right away . That's a tough pill to swallow. Thanks for the help and encouragement! The monitor suggestions are being tucked away for future reference.

Thank you to each of you for responding. It sounds as though monitoring the hr may be a way to avoid a crash. Maybe. Is the heart rate watch as effective as the heart rate monitor that you strap around your ribcage? I had thought of the oximeter, thinking that focus, fatigue, etc. indicated low O2 to the brain. But would putting that on your finger give you a decent indication of low levels in the brain? And, am I getting this correct..... the oximeter ALSO catches the heart rate? If your blood pressure standing is good (120s/80s) but the rate is 110 to 150), does that suggest hypovolemia? Do you need MORE salt then or MORE fluid then? OR could this be the addition and adjustment to the Effexor. What is a mother to do? Thank you for sharing your experience.

My daughter is 17, has EDS and POTS and NMH. She recently started Effexor75mg 1x/day and had to cut that in half because her energy level surged and heart rate was TOO high. It was wonderful in many ways, the sweetest when she declared that chemistry was interesting and fun again. Her focus was back and it had been missing for several years. With half dose, not as much focus and energy and still an elevated HR. Since last summer when POTS hit, I have been checking her BP and HR when she was so fatigued she just wanted to lay down so I caught the hypotension episodes. With the new symptoms (fatigue, lightheaded after standing up) after starting Effexor, I started checking her BP and HR when she stood up. Her HR is definitely up. I'm assuming this is related to the new medication and not the increase in activity since she is feeling so much more energetic. Would it be helpful for her to know what her heart rate is? She doesn't always notice the fast rate. Would it help to check the rate when she feels symptomatic and then......... what? Keep going? Sit down with feet up? Knowledge can be power but with POTS..... would knowledge be just more frustration? Her doctor wants her to give the medication 3 more weeks to see how her body adjusts. In the meantime, we're still trying to figure this all out. Pure POTS related to EDS? POTS exacerbated by initiating Effexor? POTS exacerbated by more activity? Any combination of the three? How do you tease it apart? What do YOU do when your rate is up? How do you get it down (other than laying down) or can you? Thanks for any opinions and words of wisdom.

DD has been downing 1 Powerade 0/day for 6 months. I heard of Nunn tablets and they don't have as much sodium/fl oz and would be expensive to replicate a 32 oz PA Zero. So. I heard of GU Brew Electrolyte tablets. DD really likes them. DD has POTS and NMH (EDS also). She recently started Effexor XR. With her increased energy, she had a rare busy day Friday with a field trip (standing/walking for 1 hour +) and then a picnic and time to run a little and play with her chemistry classmates at a park. Saturday and Sunday, she was truly POTSy on and off with fatigue and high heart rate when she stood up. I think this may have been precipitated with Fridays fun. But I'm looking at anything else that has changed and that would be the addition of Effexor and switching from Powerade to GU Brew. Her blood pressure has ranged from good to the upper end of low (or the low end of good). So, should I be looking at the GU Brew switch? Could dropping potassium by 50% trigger anything? The types of sodium are different in these 2 items. PA has sodium chloride and sodium citrate along with potassium citrate and potassium phosphate. GU Brew has sodium bicarbonate, sodium carbonate and potassium bicarbonate. Lists sodium at 320 mg per serving/tablet/16 oz. of water. Is there a difference in the form of sodium? Is the GU Brew comparable to Powerade in helping with OI? Goodness, what a life with playing Sherlock Holmes in figuring out what provoked her autonomic nervous system. This is truly a learning time for us. Thanks.

Thank you. She does a Poweraide Zero 1x/day, 2 Thermotabs /meal and 4 doses of midodrine/day plus more salty foods and a propel or 2 + V-8, water, etc. She recently added a B complex vitamin. I just spoke to her physical therapist and he DID say that being consistent with the midodrine is very important. Consistency isn't there yet. It is something that she still need to take ownership of. Taking anything *4* times a day is a hassle and easy to forget. Any tips? Her vision issue wasn't blurred vision but distorted... the walls were angled and once it was bowed outward. When you or your kids are symptomatic, are you/they ever non-responsive.... not comatose but you just don't give/get an answer (or one more than a shrug, an "I don't know", etc.) ? When I don't get an answer to questions on what is going on to determine if and how to help her.. It's as though she can't figure out how to answer me. Or it takes too much effort.

So, is that vision flash a sign that she needs to drink, take her med, take some salt? Or does it happen if you are doing everything textbook perfect? Just learning what she can do something about and what she just has to ride out.

We are still learning as we go with my daughters diagnosis of POTS/NMH. I've read that vision disturbances are part of the package. She described walls being distorted for several seconds on an infrequent basis. In a way that sounds like an aura but she has no migraines, headaches. Could this be part of dysautonomia? In helping my daughter, I am trying to figure out when she needs my help to beat back the symptoms. She can be hypotensive even with laying down. She can get lethargic/down. Could it be dysautonomia? If so, can she reach a point where she is fighting a losing battle to do what she needs to do and then needs intervention? I keep encouraging her to be proactive instead of reactive, to prevent rather than try to fix. Giving her fluids, a thermotab and a dose of midodrine has helped in a couple of past episodes. I think. At least, she got up and tackled school work not long after. EDS, POTS, NMH, 17, senior. What a combination to sort out. Your experiences? Words of wisdom?