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Everything posted by PetuniasMom

  1. Wondering if anyone who has done IV saline therapy to recover from a crash, or on a regular basis even, could tell me what the amount of saline over what time frame you were treated with is... I hope that makes sense....
  2. Hi Tara, I dont want to post in the forum but would be happy to talk to you about my experience in Montreal...funny, I too am about 2 hours away... just send me a private message if you wish to chat!
  3. I remember having a discussion with someone about how an airplane flight affected their symptoms. Can anybody tell me what your experience during and after a flight has been - did it affect you?
  4. My daughter takes .1mg of Florinef a day. After 3 days, she had improvement. After 1 month she said she would never, ever give up this medication. She has been taking it for a year now. Her doctor told her in May that if she had to double her dose to make it through the summer, she could....but she didn't have to. The effects of the blood volume expansion from the florinef - took her dizzy and lightheadedness away, took her headache down to a normal 'headache' level and eventually a mild level, more blood available to digest her food helped with tummy pain and nausea, aaand the other part of digestion too. She took hers with a meal, usually suppertime until about 3 months ago. It did have some side effects for her and she just prefered to take it at that time of day, because she felt so yucky in the morning anyways. She now takes it in the morning, as she is well enough to eat breakfast - yeah!! We don't test for potassium levels, but we make sure she eats lots of strawberries, bananas, and sunflower seeds.
  5. My daughter has a light sensiivity issue - she hates the first 20 seconds that she steps outside, always shields her eyes and has an instant reaction. We also just learned this week that she cannot tolerate a 3D movie. She had been doing very well for the last month or so, but then put on a pair of 3D glasses to watch an animated 3D movie, and afterwards had a huge crash - dizzy, shaky, very nauseated, and panicky - said she hadn't felt that badly in a very long time. We did our usualy crash-routine, double salt Mcdonalds fries, lots of gatorade and sleep - after a few hours she was back to "normal", or out of crash mode at least. Couldn't figure it out, until she told me she had watched the movie. #lifelesson
  6. It has taken my daughter a year to arrive at a tiny bit of acceptance that she has some limitations that other teenagers don't have. She is so determined, and has told me that 'there is no part of me that wants to sit on the couch all day and drink 6 bottles of water...', and yet many days that is all she can do. I understand how you are feeling. She finally arrived at the conclusion that she cannot continue with regular school, which she was pushing so hard to do because she wants to be around people, and her old friends - and she really has learned who her friends are through all of this. It was a hard decision for her, but I see her coming to terms a bit more with herself. One thing she does have is a minimal part time job, in an air conditioned place, that gives her only a couple of 3 or 4 hour shifts a week. That gives her something to feel good about, gets her out of the house, and gives her some spending money too. The only reason she is able to do it is because of the air conditioning and the short shifts, and she often sleeps most of the day before her shift and then sleeps right when she gets home, but she says it is worth it. Not much help, just understanding how you are feeling.
  7. Thank you. My daughter takes .01 (or is it .1?)mg of Florinef and her cardiologist has recommended adding in 2.5mg of midodrine 3x a day. I trust him with her life, would trust him with anything, just looking for a bit of feedback. I guess I should monitor her blood pressure for the first little bit when we add it in, and see how she feels. She did initially start out with midodrine a year ago when she was diagnosed, but it didn't do enough for her, so he switched to Florinef. Thanks everyone!
  8. Does anybody take Florinef and Midodrine both?
  9. Thank you very much for the kind words. I know when I write, there is always somene who knows exatly what I mean to say, exactly how it feels, and just what to say. Thankful for the board today!
  10. Just wondering how all of you deal with the 'crashes' - the times where your aren't able to manage your symptoms enough to function as you were. My daughter has been home from school for 2 weeks now, feels like her Florinef has stopped working, and is dealing with all of her symptoms all over again almost like it was before diagnosis and medication. And, her period comes next week, and when she realized that, she cried, knowing everything will get even worse. Not sure what brought it on other than stress and warmer weather, but we have managed the warmer weather with air conditioning at home. The first week she was home, when she did have one good day, she hesitated to go to school, because what happens is that she says home for 3 days, sees an improvement in how she feels, and then hates to give up that improvement by going back and putting in a full day of school. And then, she stresses about missing so much school, catching up, how is she ever going to do this next year, what about university etc etc. I am trying to teach her to deal with one day at a time, but it is hard for a 15 year old who has her whole life ahead of her, to watch her peers and friends.... well, you know. I guess this turned out to be more of a vent than I meant it to. I think I was just looking for suggestions. She is eating as much salt as possible, and drinking lots of water and Gatorade. I think I should have her potassium checked, but I am worried that taking even one vial of blood from her will make her even worse. She is sitting instead of laying down as much as she can. I don't have compression stockings for her at the moment, but I did have some and she refused to wear them, I don't mind getting them again but taking her to be fitted today or soon isn't an option really. Am I missing anything.... is there anything more I can do for her right now? Physically or mentally/emotionally, I feel like I'm not doing enough and I just am at a loss. Its so, so hard not to be able to help your child.
  11. I was happy for you when I read this. It feels good when your doctor is willing to acknowledge, listen, and try something new for you. My daughter went from midodrine to Florinef. She hated midodrine and its side effects. With florinef, she did experience an increase in head pain initially, and when she first started taking it she felt a bit 'wired'. She started to take it at suppertime after a few weeks on it, which really helped her adjust to some of the side effects she was feeling. She now takes it anywhere after 11am with food and just finds she tolerates it better that way. Honestly, she went from bedridden and not feeling well 100% of the time in July, then on florinef, to a part time job in August, and back to school in September. She says she will not go off the Florinef for anything. And as far as tummy trouble, for her, it increased her blood volume which allowed her digestive system to actually function, so her nausea really faded alot and her actual tummy pain isn't as bad as it used to be. I am excited for you, and will keep my fingers crossed!!
  12. My daughter takes florinef, and has had some improvement in her symptoms over the past 9 months or so that she has been on it. For the last couple of weeks, and without alot of detail, she hasn't been doing well. I am wondering if your body eventually builds a tolerance to florinef? For those of you that take it, how much do you take and what time of day do you take it?
  13. My daughter tried domperidone and metoclopramide (is that reglan?), with no success. The only thing that helped her tummy was when she started Florinef. She had lots of pain and bloating, constant nausea, and a very full feeling after only a few bites of food alot of the time. I think its because the florinef increased her blood volume, and your digestive system requires alot of blood to function properly. I also encourage her to stick with easy to digest foods - LOW fibre including white bread and white rice - not brown, low fat, minimal dairy, cooked not raw veggies, lean meat... all while trying to maintain high sodium intake
  14. Alyssa, my daughter is the same. Intense itching. No creams, lotions etc help, it doesnt appear to be 'dry skin'. No explanation for it, and yes, she has patches of little red bumps - sort of - because you can feel them but barely see them. She could scratch her legs right off, thats how itchy they are. And, it does seem to only happen at night. I have nothing to offer for help, but if you find anything or learn anything I would love to know!
  15. In starting the Levine protocol, it was never offered to my daughter as a 'cure'. Nor was it suggested that her POTS was caused by deconditioning. She was an athlete prior to her symptoms, and I believe her POTS is genetic. The Levine exercise program has been described and explained to her as a method of hopefully improving some of her quality of life, much like the prescription for florinef has done for her... the prescription is for exercise and hopefully she will get some benefit from it. The benefits of exercise for her as a POTS sufferer have been explained to be improved cerebral blood flow, a circulatory system in top condition, increased blood volume (with chronic exercise), increased strength in her leg muscles which are your 'pumps', and a workout for your autonomic system which gets called to attention every time you exercise. On top of that, maybe she will get some endorphines going, which isn't something that happens often for her. Her program from Dr. Levine is extremely specific, and formulated from her TTT results. We have been advised that she will feel worse before she feels better, and that perseverence is the key. I don't really care whether an astronaut or a doctor designed the program. Perhaps after our experiences with the healthcare system thus far and getting her diagnosed, I should say that I am happy to have a NASA researcher involved! If she gets some improvement in her symptoms and in any small way feels better, he can call her a Grinch all he wants
  16. kcmom, I am happy for your son to have something new to try for his tummy! Right now that is something we are struggling with. A month or so ago I discussed liquid erythro with her paediatric GI, and while he was aware of its benefits, he advised me that there is a supply issue from the manufacturer, and we are unable to access it. I called about 10 pharmacies within an hour radius and they all told me the same thing. We are a border town, so the USA is about a half hour drive - I did call 2 pharmacies there as well, and they both told me the same thing. I would drive to the end of the earth to get some, she is having so much trouble right now. I hate to ask for personal information, but I would love to contact a pharmacy or find out the name of the manufacturer that supplies the pharmacy with the liquid erythro that I could pass on to our pharmacist....
  17. Thank you... Dizzysillyak, I will try the lemon water, we make sure she ingests noooo caffiene, and will maybe reconsider the gluten. She did have a biopsy and was negative for celiac, but I understand that her digestion is different, so maybe it is just harder for her to digest gluten? Katy - I will have to think about her salt intake a bit more - we try to fill her diet with lots of high sodium foods, cheese, prepared salad dressings, pickles and soup...and lots of salt with her meals. But, when I think about it, she hasn't been eating as much maybe, because she hasn't been feeling well. But thats something I will watch for sure, because I guess too much is never enough, right...? ramakentesh - I wondered if your body develops a tolerance to florinef and it becomes less effective? She is on .1mg per day, and has been on it for 5 months now.
  18. Things were bumping along, with good days and bad, managing with school most days, tired but able to cope....and for about 4 weeks now, my daughter has been worse. Nausea is back, tummy pain is bad, exhaustion - not just tired but exhausted...and color ranges from gray to white. Her heart is doing funny things again too - in the middle of the night she has come to get me because she is scared - she feels like her heart is racing and her breath can't keep up - she says she cant describe it any other way. Nothing has changed - still taking florinef, drinking as much as she can but its hard when she feels this way. Just wondering what might make the florinef less effective all of a sudden?
  19. kcmom - i often find myself 'mmm-hmmm'-ing when I read your posts, as my daughter sounds similar in so many ways. Last spring and summer, before medication, she was nauseous 24-7, along with pain in her stomach. When she started Florinef, she did have quite a bit of improvement in this area - and if I understand right it was because she had more blood volume with the florinef to aid the whole digestive process. However , the last month has brought a change for her and while she is not as nauseated as she was, the symptoms are returning and her tummy pain is BAD. She would be angry if I discussed bowel movements here, but I know that is involved. Interesting to me that you mentioned mast cell, and I am on my way to reading the article - she has experience intense itching lately, for no reason, and she woke me up last night after experiencing what I feel others describe as a 'flushing' episode.... feeling faint and unwell afterwards, red cheeks and almost feverish... I think this is sort of mcad symptoms - but have to read more. Not to get sidetracked - my Pediatric GI had little to offer other than to eat an easy to digest diet, low fat, low fiber. And I hate to say it that way - little to offer - because he is the one who diagnosed her in the first place and sent her to the cardiologist which led to her diagnosis. He had the most to offer us in that way! Macks mom - If you would be willing to share, I would love to know what meds your son takes that are the GERD medications, and the GI prokinetic. We tried 2 different medications for motility and both had awful side effects. We have looked into the liquid erythromycin but apparently there is a supply issue and we arent able to get it anywhere. She is struggling at the moment, and I would do anything to help her
  20. As far as what does an adrenaline surge feel like, my daughter has described this - she randomly gets the sensation or feeling like she is on a roller coaster at the top, and that feeling you get when you juuuust start to go down it.....or like when you are standing on the edge of something and you almost fall - do you know what I mean? They come randomly for her, sitting in class, or just at random times, sometimes when she is trying to sleep....no anxiety involved, no worries. So, I have wondered if this is an adrenaline surge for her - does anyone else feel that too?
  21. My daughters pupils are often HUGE. There are a couple of ways that I gauge how she is feeling, and her pupils are one of those ways - seems that when they are large, she feels yucky - varying degrees of yucky I guess, but we always know she is not good if her pupils are large...
  22. My daughter had really, really bad headaches. She described it a bit differently too, but I think it must be really hard for kids to put into words what they are trying to describe. Especially while they are not feeling well. The best description was when she told me she felt like she was hit in the head with a baseball bat all the time. The pain was really bad for her. She did get some relief from it when she started florinef... I think maybe it was the increased blood volume and flow, but I am not sure. Its so hard to be sure of anything with this. Anyways, her head pain has returned, not baseball bat pain, but definitely headaches worth mentioning. And nothing helps - we have not found any medication that takes away the pain.
  23. I know I'm going to have a hard time putting my thoughts into words on this one, so please bear with me. We have kept the air conditioning on all summer long, something we don't ordinarily do, for my daughter. She was extremely heat intolerant all summer long, and we have been looking forward to fall weather. Well, the fall weather hasn't been that much of a help. She still finds it 'heavy' to breathe...she has no asthma, no lung problems etc, just finds the air warm and heavy. Even when we are all freezing in here, she says its hot in here, and hard to breathe. And I know she isn't just being difficult - when she isnt feeling well, its written all over her face. All summer long we knew when she was having a worse day than others, because she would go and lower the temperature on the air conditioning unit. I would do anything to make her comfortable, but the cold winter is coming, and I dont mind keeping the house cooler for her - we can put on sweaters and blankets....but I am worried about not being able to put the A/C on, which seemed to 'lighten'up the air for her. And, its not every day, its just random. Worse when she has her period...worse if she has overexerted herself...worse if she has been on her feet for a while. I guess I am just wondering what anyone might have for a suggestion, do you feel the same way, and how do you manage your home air quality/warmth environment? Thank you!
  24. Do any of you do salt tabs instead of eating salty foods, or do any IV saline to increase fluids? My daughter was doing not to bad, but we are experiencing somewhat of a crash. Increasing fluids is so hard because of nausea, and same with the salt intake - she has done well to modify her diet to include salty stuff, and has increased her daily sodium intake somewhat. But with the fatigue and exhaustion that has returned, as well as the head pain and nausea, her diet doesn't contain as much sodium as she probably needs. Who can drink all that fliud when they're nauseated to begin with? What do you do?
  25. Oh...It was low. Guess I didnt really answer your question in the first place did I...sorry, I guess I was thinking when the midodrine increased her bp, it was sort of not low, higher but not really high enough...then we doubled it, with no ill effects....if that makes any sense...sorry for the confusion!!
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