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  1. hummmm. That is something that I did NOT know. She came off of licorice root and butchers broom when she had hip surgery in November. She didn't take any of those for about a month. Now that age old quandry. Do I have her POTs dr. do blood work in 4 weeks when she sees him next or do I pull her off of or reduce the licorce on our own???? errrrrr! she does have fatigue, had exercise intolerance and was having cramping in her feet recently. I may suggest that she reduce her licorce. Thanks for sharing this! She fell asleep Friday night quickly with the melatonin. She did the same Saturday night with it but also took the new generic of effexor. She rarely wakes up on her own before 10am. She was up, dressed, hair brushed, bed made and smiling downstairs by 7:40am this morning. Generic change?? I've cautioned her to pace herself as she really is recovering from a POTs flare.
  2. Thanks for the ideas. Effexor helped with pain which made sleep better. The doom feelings disappeared, too. The pharmacist just ordered a different generic manufacturer that has a very good record so we'll see what happens with that. Her POTS dr. did suggest that she try the melatonin. I think she fell asleep much faster last night and seems to have functioned fairly well today. It sounds like something she can use one night and not the next. 13 is just too young to have insomnia. Thinking of you! Anne
  3. My daughter tried saline via IV with a home health nurse for POTS/NMH. She responded very well to it. Because she has EDS, long term IV access on her arms would not have worked. She has a port placed near the bottom of her sternum. She orders her supplies every 2 weeks, can tweak the volume based on the season (needs more in the warmer months), or time of month. We use the HSA funds to pay the deductibles. Last year, she met her out of pocket maximum between PT and the infusion supplies early in the year. Right now, the deductibles are running about $100 to $120/5 infusions until the deductible is met. She is very, very careful to follow sterilized field protocols and has never had an infection in 14 months. She DID manage to pump an entire iv line of air into herself when she forgot that ONE time to bleed the line of air. That resolved itself by the time she got to the second ER but that was a very long day and night. Here is something that might give you some ideas on talking to your doctor. http://potsgrrl.blogspot.com/2011/08/how-to-talk-to-your-doctor-about-iv.html Anne
  4. My 19 yo daughter, Alana, is struggling with bouts of fatigue, poor sleep, exercise intolerance, stomach pain on standing, poor concentration, etc. even though she is doing her saline infusions along with midodrine, florinef, licorice root, butchers broom, omeprezole, effexor, salt, etc, etc. etc. Her hr and bp numbers aren't "bad" but she is symptomatic. So, it's not as bad as POTS/NMH before saline but the past month or so has been different since she started the saline 14 months ago. So. Our ideas we're trying to sort out. One is that her low dose effexor was changed to a different generic manufacturer in Feb. Our wonderful pharmacist is getting in another manufacturer's generic effexor today for her to try. Another idea is that she was on tamiflu for a week and then had a very mild "flu" for 2 days... fatigue, headache and drippy nose. Then a head cold 2 weeks later. The other idea is that she has hit the gym a bit too hard, running/walking on the treadmill for up to 30 minutes. Her dr. has suggested melatonin for sleep and her pharmacist gave her some sleep hygiene tips. But her dr. tossed out the idea of ritalin, low dose, for her to think about. DOn't like that idea at all. So I'm trying to figure out if this is a new normal or if something(s) triggered a flare and it will die down with time. Any opinions on what may have triggered this setback? Anything sound familiar to you? When things are going better, it is so easy to fall into an assumption of normalcy. That things are better than they really are. Reality check. Anne
  5. The pcp mentioned that the Q-T interval/rate is adjusted for the heart rate. So, I think that the ECG can record a long QT interval but when it is adjusted for the hr, it is no longer long QT. Good grief. Sometimes, I just get overwhelmed with all of the variations, etc. Life experience sure is a tough way to learn our way to a medical degree
  6. Thank you, both. DD just had another rhythm strip done yesterday and the QT was perfect.
  7. Does anyone know how common long Q-T Syndrome is with dysautonomia? I read yesterday that the Q-T interval lengthens during bradycardia. Don't know if an EKG a couple of years ago showed a borderline long Q-T interval because she was in an episode of bradycardia. Just poking around to see if this is common with dysautonomia.
  8. DD's infusions are done slowly, usually about 3 1/2 hours to 4 hours for 1500ml. A fast IV such as they give in the ER..... don't know if that would help as much.
  9. DD tried this last fall via IV on her arm/hand which a home health nurse set up. It really helped so she now has a port and accesses it herself 3x/wk. It has helped a lot. Better endurance and energy so she can now do her exercises and has even joined a small local gym to use the treadmill and some other machines but all within limits for her joints. She has had a couple of episodes after starting the gym where she was very tired later that day. EDS or POTS, I don't know but she is working on adjusting her routine and intensity so that fatigue doesn't hit her. It has helped with concentration and focus so that has helped with schoolwork. She doesn't get POTSy driving. She's up and active, probably went from 50% function to about 80%+ function. The one question is how will she handle the heat that will be coming shortly? Don't know but so far, it's been a life changer. She sees a nephrologist.
  10. My dd has EDS and her doctor's theory is that with faulty collagen, her vessels, etc. may be leaky and have a difficult time holding on to water. The theory behind the saline infusions is that more fluid can get into the tissue "compartments". So, she can drink lots of fluid and still be dehydrated because the fluid is not filling the tissue and cells. The GU Brew is just one way to get in sodium and fluid. She may go thru 2 to 3 tablets/day. I don't KNOW that they help that much but they do provide the sodium, potassium, etc. I think all sugars, carbs are turned into glucose during digestion. But simple carbs will convert to glucose more quickly than more complex carbs. That difference may factor into how well the sodium and glucose work together.
  11. DD had been and off a gluten free diet for several years. She finally took it seriously this summer and then was asked to go OFF of it for 2 weeks prior to an endoscopy. She felt horrible. Tired, nauseous, brain fog to the extreme. As soon as the procedure was done, she went gluten free and felt better. Not cured but better. I think it was an eye opener for her. She is faithful following it.
  12. Well, I've been poking around this morning and find that there is a sodium-glucose cotransport mechanism in the intestine. Then this little snippet from the link below. It's not just table sugar but glucose.... honey, etc. While there are sugars in fruit, I don't know how much fruit you'd have to eat to equal the beneficial amount of needed carb/glucose. The quote below gives a 3g water to 1g carb ratio. "Glucose is an easy carbohydrate for your body to digest and absorb quickly. Carbohydrates can help to rehydrate your tissues by storing about 3 g of water for each 1 g of carbohydrate. As part of a rehydration beverage, glucose encourages your cells to store fluid and provides the fuel necessary for quick energy." Read more: http://www.livestrong.com/article/498562-why-are-salt-glucose-needed-for-rehydration/#ixzz2JNKj2eUD
  13. My dd is using Gu Brew Electrolyte tablets. No dyes. The sweetener is stevia. REI carries them at a very good discount for a multiple order (I usually order 12 at a time and I've paid anywhere from $4.60 to $5.50ish/ instead of $6.50). They do have 40mg less sodium than NUNN but I don't think that is going to make a difference. When the home health nurse was here helping her do her saline infusions, she mentioned that the body needs sugars to help "drive in" the sodium, etc. into the cells. So. While I'm glad that dd isn't chugging dye filled gatorade, powerade, etc. with its artifical sweetener or loads of sugar, we've decided to start adding a teaspoon or 2+ of table sugar to the GU Brew. She has also added a similar flavor packet of EmergenC to the GU. (1 tablet Strawberry Lemonade GB with 1 packet Pink Lemonade EmergenC.) The combination seems to make a good blend. They both fizz. She just waits until it has died down before she drinks it.
  14. Rachel, my understanding is that my home health/pharmacy provider is a subsidiary of Divata which is a large company. I wonder if by contacting them, you'd be able to find one of their subsidiarys or if they could take a prescription from your doctor and ship to you. The supplier/agency/pharmacy is available 24/7. http://www.davita.co...asked-questions That is a wonderful hymn you've quoted! Our soul anchor. Addition. Here is another good page from their website. http://davitarx.com/
  15. My dd tried the saline IV therapy, it worked and she now has a port. The home health nurse taught her how to access it and she's independent with it. The home health agency is 1 1/2 hours away. They started by sending someone out to deliver to us. Recently, they have been FedEx'ing things to us, even saline. The doctor ordering the IV's is the one who connected the agency with us. The agency does not have home health nurses but they contracted an agency that does. That agency came out here (1 hour away) for the peripheral IV's. With the port, there is only the need for supplies and those can be shipped to our door.
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