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55baron

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Everything posted by 55baron

  1. Oh yeah, its familiar. Ana used to be ok with smaller planes, but with bigger ones, she would get shortness of breath, severe pressure on her chest, then of course a migraine. Now it happens with all planes. All we can figure out is it has something to do with the pressure. Tried all the things you did.....didn;t work either. Used oxygen on one flight on United, they almost refused to let us go on our connecting flight, saying that she was to sick to be on a plane, and we could get a bus! Then the stewardess even said that oxygen was for emergency purposes only.|!! I was furious! If you find any answers, I'm all ears!! Cathy
  2. My daughter was diagnosed (in this order) Gastroparisis, POTS, (at the same time) eds, chronic intestional pseudo obstruction and a week ago mitochondrial disorder. She was approved for SSI at 18, with only the first three diagnosis, after only 3 weeks. All of these diagnosis are "rare" "untreatable" conditions. Even Mitrochondrial disorder. THe defects Ana has make no sense, but she had the entire dna workup, so its correct. All these syndromes are real diseases. They all had test to diagnosis (except eds). Just treat the symptoms! In the beginning, I wanted something with a name that they could fix! So much for that!! Todd, do you notice a difference with co Q 10? Ana is on it again for the second time. She doesn't notice any difference. Cathy
  3. Does it really matter?? I don't believe that you will ever truly figure out the cause. there are alot of could be's or maybe's, but there isn't a test or anything to figure out exactly the cause. The treatment doesn't change. As for mitochondrial disease, my daughter was just tested, total DNA make-up. ($$$$) She has 3 dna positive malformations, definately mitochondrial disease. One is associated with infants dying at birth. My daughter is 19, obviously doesnt pertain to her!! Non of the three pertain to her, so she definately has mitochondrial disease, but since the testing came before the explanations, thats it!! We don't know.... With POTS, there is alot on non-answers. I dont think there really is a for sure answer to any of our questions!! If only there were........
  4. Oh Brynne! THis is definately a torn question. we've been told that if you use a wheelchair, your to sick to go anywhere..... I don't believe that is true. My daughter is 5 yr into to pots diagnosis. It got to the point where she was unable to walk 10 steps without resting, she didn't leave the house because it was to exhausting and it would take days sometimes to recover. My thoughts are, if it makes you able to go places for a longer time, DEFINATELY use it!! It won't decondition that much, if you still do strengthening exercises and walk short distances... its ok After 5 years and more diagnosis and more surgeries, my daughter is in a wheelchair all the time, but its not walking enough and using her wheelchair. Its from 3 surgeries in 3 month, not enough time to recover... or its another condition altogether, waiting on those tests!! Still trying to figure that out.. My strong opinion is, if it enables you to be out and about for a longer time, do it!! Its VERY important to keep the socialization of life as active as possible. Cathy
  5. Dr Grubb, at cleveland clinic, is one of the premier pots doctor and researcher. But you have to wait months and months for an appointment, an I've read that calls aren't returned promptly. You being new to POTS, I remember the confusion, and it doesn't get better for years.... Its on thing after another.... Its hard to find a dr who is knowledgable with pots and who can treat and help adjust. Being a 5 year veteran of a child with pots, I found the best info is on support groups like this one. And to sort through the info. Every child with pots is different! different symptoms, slightly different treatments. Remember that. Good luck, and remember, ask every question!! Cathy
  6. My daughters pots has been severe for a few years. She also has GP and CIPO, so she has had a few laparoscopic surgeries for various tubes. We have followed the suggestions( forget where I think it was here on dinet) to just let the know of the pots and to really monitor bp and heart rate, and to increase fluids before during and after. She has always done ok, except double the recovery. Which we always expect.!! Good luck
  7. My daughter has been on a beta blocker, started with atenolol then went to metoprolol (to block heart rate from going to high), amitryptiline (to control headache), midodrine (to raise blood pressure), florinef to increase blood flow), she has ben on then for about 5 years. This year has been the best in 5 years! (knock wood). It took her a few years of adjusting the dosage to get it right for her. There are ALOT of protocols for treating pots, you have to try things one at a time to see what works and what doesn't. Good luck
  8. My daughter and I were members of dynakids for the first 4 years of her illness. It totally saved me and my daughter connected with some awesome kids. Yes, mostly girls, as pots is mostly girls. The moms are very knowledgable and caring. Last year, something went on, everyone was kicked off and had to "reapply". There was a shakeup of the moderators. I have talked to a moderator that was asked to "resign", and it was just a strange situation. All I know is they have strange rules that they go by, and your opinion about your child doesn't count. We weren't allowed to attend their summer conference because according to them, my daughter was "to sick to attend." She is in a wheelchair, but healthwise is doing better than ever!! But their rules. We didn't rejoin.
  9. I love this thread! When my daughter was first homebound, mid sophmore year.. I did AOT of research, talked with alot of other parents, most of who were having problems with schools. Well, I dug in and did my research, and went to the school expecting a fight. I didnt really get one, but learned alot. My daughter had a 504, which we chose because you can change anything about it with a simple meeting. iep's are harder to change. And with pots symptoms ever-changing, we thought it would be better. I got alot of extended times, alternate credits, (imagine a student getting a physical education credit when she couldn't even walk!! Or extra english credits by watching movies and filling out questions when her brain fog was so bad she usually forgot the name of the movie before it was over!! (just a heads up, you can get alot of accommodations for taking the ACT and SAT. But start early... I would suggest specific letters from doctors, asking specifically for whatever you are thinking would work. (Ana had tutors for two years and they came over the summer) as well as all the info you can print about symptoms and causes. The ones on this site worked beautifully for us. Also, I let it be known that I knew where to go if they chose not to give a "free and appropriate education" to my daughter no matter what the cause was or what I was asking for. I didn't care if it would cost the district more, look at your property taxs and see if your spending that much! (I hope I can follow what is happening. Its kinda hard to find discussions I'm following! Just so you know, Ana graduated #6 in her class of 125. She is in her second semester of college, with a 4.0! It can be done..... Cathy Keep us posted....we're in Wisconsin
  10. Oh yeah! Very familiar. My daughter has severe pots symptoms for 2 years, during that time she had several procedures. Since all surgeries require fasting, she had a hard time recovering every time. IV saline would certainly help. I would be concerned about not being upright beforehand because then she would just have that to recover from to. Ana was unable to be upright for almost a full year, it was hard!! We only schedule procedures early in the morning, that way, since my pots daughter sleeps 12 hours a night, it was much easier! We were lucky enough to convince the hospital that due to her special circumstances, she needed to have priority. Good luck Cathy
  11. I am just saddened by your story! My daughter who after being diagnosed with gastroparsis and POTS, went to the "great" mayo clinic. They totally dismissed her diagnosis' that she came in with and went on to diagnosis her with there own version. Psychiatric of course. I'm appalled to hear of this happening. And I have heard many, many stories of the same type of thing. Why do rare illnesses bring this on?? I'm grateful you are recovering enough emotionally to share your experience! I hope you realize how you are helping others! Others who have silently been living with the same type of treatment! Everyone needs to develop a strong disposition to be self advocating. You are a good lesson for all. CONGRATULATIONS! AND THANK YOU.. Cathy
  12. This is a good thread!! My daughter was diagnosed with POTS and gastroparisis in 1996. WHY? a 12 hour virus "activated" it. WHY??? did she have it all along? did the virus just activate it?? then came along EDS. ?? 50% of people with EDS/hypermobility get EDS. She obviously had EDS all her life, we remember the way her joints over extended and thought it was just "weird" That was just Ana!! Then came CIPO. All are intertwined! one "could" lead to another. Maybe not! All is somehow linked. Will we ever know?? We have been looking and looking, but haven't found that "link". But as we all know, with chronic illness, especially invisible ones, we may never get that answer we all so desperately need!! For the first few years all I could dwell on is "she has a rare, invisible illness with no treatment and no cure". REALLY???? And then came more... In this era?? thats unthinkable!! I know we want, and need answers, but sometimes they just can't be found. Hopefully everyone finds some relief. Cathy
  13. Hi all! This is my first post! I have been following some topics and everyone seems pretty knowledgeable. Lots of real time info. So here's my question. My daughter has had pots, & GP for 5 years. She also was diagnosed with CIPO and EDS. For the last couple years, whenever we take a plane, she gets severe chest pain and shortness of breath. For one trip, we brought oxygen, that seemed to help a little. Took the severeness away. I have only found out that changes in cabin pressure can cause this. But this severe? Can anything be done? Tried? Of course, insurance doesnt cover oxygen for this purpose. Does this happen to anyone else? Not traveling isn't an option for her. She feels she has had enough taken away from her with these illnesses, she won't let it stop her from traveling to. Not that we travel all that much, but we do once or twice a year. Any thoughts would be greatly appreciated. Cathy
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