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kclynn

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Everything posted by kclynn

  1. Brenda, I know, I think I have probably read all his articles. I was refering to this study particularily. These studies are so hard to interpret anyway, unless you are privy to the initial "criteria".
  2. I don't know about whether orthostatic stuff makes you more at risk. If you take birth control, if you smoke, if you are inactive, if you are overweight, all these make you more at risk. I had a blood clot and they went to my lungs. I couldn't feel the blood clot in my pelvis though, but remember reading at at the time a lot of people could. If you are concerned you should have it checked out as soon as possible. I ignored my signs and ended up in the hospital and then on blood thinners. The cause for me was apparently the birth control.
  3. Dr. Thomas Chelimsky His contact information is changing. On Dec 15th he is starting at Froedert in Milwaukee but I don't know any specific information.
  4. I Loved Dr Alison! My son saw him and he was great. Best Dr. we saw there.
  5. Good Luck at Mayo. You can learn a lot. It looks like you have a diagnosis and are already doing some diet and exercise programs. Do you know what Dr. you will be seeing?
  6. Yogini, I think there are a number of kids who are outgrowing this who are going into medicine. I can only think they will make excellent Dr. what ever their speciality will be.
  7. Last winter my son had temps all over the place. When he felt pretty ok (rare) it would be 98.6 every time but he often had temps either 99.8 or 100 or the opposite, 95. 3 (ask me if they believed that)
  8. Jesse, I agree. Wish I could see the whole study. Pots wouldn't BE pots without the "S" (syndrome). Also, when my son went to Mayo for ttt his heartrate was barely up 28 bpm and they called it within the real of autonomic dysfunction and pots. My son had another ttt somewhere where he could actually get treatment 4 months later and his increase in bpm was 50 (over the new criteria apparently). So what happens to those who are sick and don't meet the criteria? I AM glad they are doing research, I just hope they use it as pieces of the puzzle vs one diffinite almighty declaration. Would love to hear what Dr. Grubb has to say about this.
  9. Is this why my son blanks when taking tests, asked a question, sometimes can't put two words together or even utter a single word, etc... especially when he is fatigued?
  10. I think it you want an article that accurately reflects your situations then you should write an artitcle and submit it. There are lots of people who have already written their stories on this web site but the news people are not nessasarily going to come here and see them. Progress is being made. I thought the article was pretty good. It is focused on the girls story. I don't think people who don't live this could possibly understand but awareness would the goal.
  11. Maybe you could make a visual. Something like, picture 100 teens with pots, 80% "outgrow" it - that still leaves 20 people left with it.
  12. Do you have someone you can take with you to discuss the results? It often helps to have a second set of ears.
  13. I heard Amitriptyline can reduce sweating and you are supposed to be careful being in the sun with it. Also it is used for various things like fibromyalgia and GI pain and other functional pain syndromes.
  14. Our dentist was worried about even doing a cleaning because my son was over .2 florineff but it had been less than 3 weeks.
  15. Dave, my son also has had a very difficult road so far. Last few weeks have been awful, with him missing 5 days of school in a row (and many misses prior). He is on part time. It is so hard to describe this condition because there are so many variances to it. The boy in the article may have an increase in symptoms at any time, or he may not. I do think doing everything possible to keep moving is the number 1 priority we have here. That said the 5 days he just missed he did very, very little moving and sometimes literally could not answer a question because he couldn't cognitively put the words together. For many POTS is very up and down and I believe if my son takes advantage of when he is feeling a little better to be active then the times he is down may not last as long. Sometimes I feel like just saying "I will get back to you all on this in a couple years because I think no one really knows." All I know is that today he went to school and came home happy. Maybe we should all write the author a nice letter and volunteer for a follow-up article that would encompass the many different faces of pots. Oh, and I don't get the high achieving description either.
  16. Have they tested this before? There have been some recent conversations about low iron, I think. So sorry it might make you feel bad before you feel better Keep trying to look beyond, and it might not make you feel bad. Breathe...
  17. We have an appt in 9 days (not soon enough!) with his cardiologist. We can't get in sooner, I tried but am on a call list. He has been on Florinef and Midodrine which have worked but seem less effective now, though I doubt he would be functioning at all with out them. His blood pressure has been creeping up 130's/80's. Do they add a bb to that combo? Are there beta blockers that are more effective for this symptom than others. The jerks were soo soo bad last night and the insomnia is soo bad.
  18. I was thinking I would like to have some kind of written study that at least mentions it (doesn't have to be the focus), in case we get stuck in a local hospital or neurologist who has no understanding and still wants to chalk it up to stress. My son is having terrible, terrible jerks this week, the kind that can throw his body into a wall or down a stairs. Of course he does get stressed about THAT and that does probably just make them worse. I hate the October slide!
  19. I think keeping a diary is a good idea of his blood pressure as well as his heart rate. His blood pressure may not change much. Also make sure he has been lying quietly for several minutes. Anxiety goes along with it, and I know constantly checking the hr and bp made my son's anxiety increase. Does he mind? Would checking it everyday at the same time help making it a regular routine like brushing teeth? I know some who were not believed so you might try photographing the numbers a couple time to validate also. I would expect some variance. It happens as everyone can tell you, some days are better than others and perhaps days he drinks more, has more sodium his numbers will be better. You might even note that information. Good Luck!
  20. It has been a couple of weeks since the last increase in Florinef .15 2X day. I will try some heat on his shoulders to relax those muscles which have been tight.
  21. My son is tanking right now All week he has been miserable, out of school since Tues. Very weak, adrenaline surges and jerks. Last night he was just standing and talking and Bam! Headache hit, top and back of head as always. He was yelling in pain they were so bad, and everytime he had a surge (every minute or so) he would scream again. I gave him 3 ibuprophen and after half hour they started to subside. This morning he got up and they have hit again. He hasn't been screaming but writhing in pain is pretty bad, but so far not as often and surges don't seem to be there like they were. I just wish.... I tried ice on his neck, didn't help. Making him drink lots of water, maybe that helped last night. His blood pressure has been a bit elevated and we have been changing up his meds and lowering his midodrine but upping his florinef (before the headaches hit). He had migraines as one of his first symptoms but they have been more rare since last winter. Trying to think of things to make him more comfortable.
  22. My son was also told when starting out to just go sit on the bike. This is for if you are having lots of anxiety about it. Then start and don't use any resistance for 5 minutes and then increase as you go. It will help! Go slow but if they didn't tell you to be concerned about your heart rate, then don't worry about it too much. If your heart itself is healthy it can handle those elevated heartrates when exercising but maybe you would feel better if you asked your Dr. just what would the top heart rate be for you, then you will know to slow down when you reach that. Good Luck!
  23. Sue, where is the study, I couldn't find it.
  24. Last year my son had a number of episodes of his vision going black, and like you say, half a minute or so usually. He also had absenses that were so strange, he even had one standing up. Unlike what I have read about absence seizures, he heard what was going on around him, just couldn't respond, like he got stuck, then when he came out of it, he would maybe blurt out the answer to a question or something like that. They also would only last 20 sec +/- Don't know about the changes in vision color. He hasn't had any since he has been on the florinef or midodrine.
  25. Yes, Yes, YES! Finally! So glad you can now get on with the business of helping your son feel better. Will Dr. Stewart and his team be available to you for continuing treatment? After what you have been through I suspect your other Drs. will still be resistant no matter the reputation of any Dr. They are just to full of themselves. I hope they will be available to you.
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