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Everything posted by crowebirds

  1. We just returned from Mayo last week. We were offered the program and it was made to sound really good. My daugther could not participate as I took on a new job back in January and don't have the time off. My daughter was born with this condition. We did not know what was going on as a newborn baby. She danced from the age of 3 until she was 11. Every year she declined in health and eventually had to walk away from dance due to the intense pain and blood pooling and growing symptoms/diagnoses. Not knowing what was going on at the time, we pushed her to "suck it up" and "move on." It wasn't until she was twelve that we found out her diagnosis and began putting all the pieces together. She became deconditioned while dancing not for a lack of exercise or being lazy. We tried explaining this to them and kept asking why this program would help if exercise did not help the first time round. Why did she become deconditioned when she worked out for over an hour a day more than three days a week. They could not come up with a good answer. They had us watch a video of girls that went through the program and were now "better." The word "cured" was never used, just the word "better." In the video, the girls were jumping around and doing exercises, but they would always collapse on a couch in the midst of doing a short stint of their activity. They sent in a nurse as a cheerleader to promote the program. She could not answer my questions and instead of responding, would always redirect back to the "script" of what to say. We got home and my daughter asked me, "mom, is this really going to make me better." All I could tell her is that we would try. I am glad for this feed. It has helped me make up my mind as to whether or not we will return for the program.
  2. Well, our trip was last week. We ended up staying at the Kahler Inn and Suites. The weather was nice, no snow, but we still took advantage of the tunnels. We had a very good experience with all but one doctor. TLC was diagnosed with Dysautonomia despite normal testing. My daughter had taken her heart medicine the evening before the test with out telling us before hand. Her doctor asked her if she had taken anything and with a yes, the doctor was able to confirm the diagnosis based on the what she could see both in person and in pictures. Her beta blocker has been changed to one that targets epinephrine. This will help with her anxiety issues that are triggered by the DYS. She was also diagnosed with restless leg syndrome and hypermobility. With proper orthotics, TLC should be able to prevent additional sprained ankles. What we thought was cold urticaria was actually autoimmune urticaria. According to the allergy doctor their are no further treatments available. After I got home and did further research into it, I found that there is two other options--need to research further. We received more support for her migraines and severe acne. No answers were available regarding a connection between the two "rare" conditions. Though several conditions were confirmed, two were changed, and one new diagnosis, we were still left with more questions than answers. But now I know where to look for answers. We should receive a write up next week on the trip from all the doctors and those doing the tests. We were offered the Pain Rehab Clinic, but unfortunately will have to wait to participate in that three-week program until after I have been with my new job a little bit longer. If I had it all to do over again, I would. Having some answers is better than having no answers. I appreciate everyone's support.
  3. You will know if your vit D does not come back up. Don't just take it to take it though, be careful because it too much can hurt you. My husband and I both don't process Vit D. We have put our daughter on 2,000 iu daily and her DYS symptoms have improved. If you know someone who sells Juice Plus in your area you might want to try it. They have both a pill and gummy form. It helps to maintain your levels. They basically have put vegetables in one pill and fruit in another pill. You get the benefit of several fruits and veggies. It is all natural. The pills are normal size, but I can't swallow them for some reason so my daughter and I use the gummies.
  4. My daughter is the same way. She has been this way since birth. She will soon be 14. The only thing that has helped is Periactin. She started on it this last summer. She now has an appetite and eats, but it has it problems, because it makes her sick to eat so much.
  5. Thank you! We were told that she either has DYS or Mito because she doesn't sweat. So far no testing has been done beyond her blood work. I am hoping they will do full testing. I realize that we may walk away with not answers at all, but I atleast have to try. Doctor's in our area won't treat her for anything including headaches or anything simple because her situation is too complicated. At the worst, I would hope that they could be a resource for her doctors when they are left scratching their heads.
  6. I wanted to ask the parents who have taken their children to Mayo clinic recently about who they saw. We just got our letter in the mail and found that our daughter is assigned to Dr. Erin Knoebel in the Department of Pediatric and Adolescent Medicine. What were your experiences with who you saw? Did you just see the one doctor or was this the primary physician and you had to see many? Does anyone have experience with Dr. Knoebel and do we need to know anything about her specifically before we go that will help us out? Also, they are asking for things that were already sent to them such as the referring doctor's letter, her records and test results. Do I need to collect all this information and take it with me again? I know that it is the safest notion to do it again, but It is costly to get records from some of these places...again!
  7. My daughter was. It is a 24 hour urine collection test. It cannot be exposed to sunlight, the lab should give you a dark container to use. She was negative for it.
  8. My daughter has DYS and is also allergic to the cold. We have taken several measures to help her. She is also allergic to the heat so we can't go overboard on heating her up. I will create a list as it will be easier to read. 1. Our house is always kept at a constant temperature between 75-80 degrees. Anything less than 75 is too cold. 2. Stay out of blowing air and away from fans. Moving air is worse than still air. 3. My daughter wears knee high boots to keep the bottom half of her legs warm. (The more surface area that you can protect the better.) 4. We use Hot Hands and Hotties for the feet. Fleece slippers for the feet are the best as well for warming up ice cold feet. 5. Layer clothes, a long sleeve shirt with a short sleeve shirt on top. 6. Heavy duty coats that are light are really good, such as a blue jean jacket. Something that will block the wind, but hold in too much heat. 7. Use flannel sheets on your bed with a billoughy blanket. 8. Buy a snuggie. 9. Keep a fleece throw in the car, keep it with you when you go into cold areas (especially good for the wheelchair.) 10. The most extreme purchase we have made based on her condition is our most current car. We made sure that she would have her own dual control (both blower and temp control). The seats are also heated. 11. Cyproheptadine (Periactin) makes a huge difference when combined with singulair. Let me know when you purchase your next car based on your sensitivity to cold. ;0)
  9. Oops, sorry! She will be going to Rochester, MN.
  10. We received a call from the Mayo clinic today. TLC will have her appointment the week of March 13. Hopefully the year and a half wait will be well worth it. She has developed a lot of new issues/symptoms during that time, I hope all of it will help. We will be traveling for over 15 hours. I am sure the snow will make it longer. She is allergic to cold, so we need to minimize contact with the outside as much as possible. Any tips/pointers would be greatly appreciated. Any parents of children that went, any pointers you may have regarding preparing the child for the trip would be appreciated too. Thanks, Robin
  11. We have tried all the ear plugs on the market, but none of them will stay in her ears, she has very small ear canals. This is why we are wanting to try the custom made. Ooh, I am so afraid of desensitization therapy, I am afraid she would have a migraine that would last a month long. When in church this weekend, to me the sanctuary noise level was at its lowest ever, it was very soft, but for her it was excruciating. She even talks softly.
  12. Just a thought and I know that everybody is different. We found with TLC that cold drinks on an empty stomach would cause her nausea. She now consumes most of her drinks warm and/or without ice. If she has to have it cold, she will be sure to eat before hand. This is from the mast cell problem she has. She rarely has the uncontrolled nausea now (mostly blood sugar related when she does).
  13. My daughter has claimed to have super hearing. She always says "huh? to us when she should be able to here us. I was planning to take her to ENT to get some specialized ear plugs as she gets severe migraines that last for days that are triggered by the noise. She could not go into pep rallys, watch science videos at school or attend church services as it was all too loud for her. She goes to a special room while in church as we are very active there. Today, the noise level was very quiet as the speakers were not adjusted properly. I though she would be okay and insisted she stay in the sanctuary. She ended up with another migraine. I allowed her to leave, but it was too late. I am so glad you posted about this, I now know that it is all valid. Forgive me, its not that I don't believe her, it is just a lot to take in sometimes. She is on propranolol which helps a lot, but if we can get the ear plugs and some headphones to drown out some of the noise, I hope she can participate more. It then becomes an issue of everyone seeing headphones on her. With this condition it doesn't matter how hard you try, you just can't win.
  14. There was a Extreme Makeover Home Edition show back in September that was based on a quadriplegic. In the show, there is a center in Colorado that trains quadriplegics to heal their nerves and begin walking/running again. It took intensive therapy for many years, but there were many clients with positive results. The owner had be paralyzed for many years, developed the program, and now ambulates like nothing has ever been wrong. It really makes me wonder the correlation between their recovery and that of someone with Dysautonomia.
  15. Has no one else had this happen? I did with my daughter back in 2007/2008; however, it was her diagnostic doctor that did it. My daughter has had only one major reaction at the diagnostic hospital. And during this one major episode they tell us to give her medicine and go home. They refused to do any testing. Since then, we have had specialized dysautonomia doctors refuse to see her because of her reactions. Current Neuro is treating symptoms not even trying to diagnose anymore. Still waiting on Mayo.
  16. Thank you, everyone. She has tested negative to EDS (testable forms). May have type III or some strange variant. In some joints she is very flexible and in other joints has very little flexibility. Even though she does not have stretchy skin, she does have severe stretch marks; since she was 6 years old. She was on Klonopin already and it does help; however, due to suicidal ideation it has been stopped. Right now, they are very mild and not noticeable to someone who does not know, but they have not gone away.
  17. My daughter's newest symptom/condition is Myoclonic Jerks. They started a couple of months ago after an ear infection. The infection was difficult to treat and hard to get rid of. Some how the infection triggered shooting pain through out her body. Each time, the jerks would occur as a response. The episodes can last for hours at a time. For those that have dealt with this, what can be done to lessen the severity and the time dealing with it?
  18. My daughter has been given meds for her MCAS with horrible side effects. Each time people tried to convince us that she had to live with the effects as she is so sensitive to many drugs. I did not allow her to stick with the meds though, we did find meds that worked very well and with no side effects. The best one she was on was pulled from the market, we are back on the search again.
  19. We had to pull my daughter out of school this year and homeschool her. Her lessons are software based. All the planning and assignments are already done and it does most of the grading, attendance tracking and reporting. It is working very well. If homebound does not work out, consider homeschooling. Her anxiety is greatly improved as well as her symptoms as we are able to control her environment a lot better. We used Switched on Schoolhouse. They have other options as well which include internet based and book based. She can pace herself and get done when she is ready.
  20. Well, been gone awhile, decided to pop back in and check on everyone. Not long after my MIL passed away did we make the connection between her "sickly" issues and my daughters. However, I have begun noticing and remembering that I have a lot of the same symptoms as my daughter, but much milder. The symptoms I don't have my MIL had. We have also discovered that my FIL was most likely marfanoid. When I was dating, I remember wanting someone just like me, not my opposite, that way he would understand why I never had energy and was always tired. I married him, though he doesn't have the symptoms, he understood because of his mother's illnesses. I have wondered if the combination of our two families is what made her condition so much worse. ~~Very interesting!
  21. My daughter saw her neurologist this last Monday. He had told me that he ruled out Central Nervous System involvement based on the things you are saying below; she didn't have these same problems. Women with problems with their periods and blood pressure involvement, according to him, have a pituitary problem that affects the CNS which eventually affects the SS/PSNS.
  22. I have a 13y/o daughter with DYS, MCAS and Ehlers Danlos. She was born with this condition and before it got to the point of turning our lives upside down, she was very athletic, always on the go, and high achieving. Life is a journey, those with this condition are taking a different path, they are not alone. The patch is rocky and takes some unusual sharp turns, but it will end up in the same place as every one else. Your daughter will succeed, she will have wonderful athletic and scholarly abilities. This path once embraced and not fought can be managed successfully. Take it slow (it will slow you down), work with her teachers on her educational 504/IEP plan, and forget the map. All roads along the journey end up in the same place. Our children will grow up and they can find careers to accommodate their abilities. You won't have all the answers, but stay positive and always encourage her.
  23. I am not completely clear on your question, but from what I do understand I will answer as best as I can. My daughter started using a wheelchair at the beginning of this school year, just for school. We were amazed how it opened up the world to her. It made it possible for her to be active. The doctor would not prescribe a chair as they have yet to make the diagnosis official. We went to the local Walgreens and got a hospital style chair for $200. She uses it at school,going shopping and playing baseball with the Miracle League. It is light enough for me to fold up and lift in and out of the vehicle trunk everyday. The doctors are wrong, it does not make you weaker. She still walks short distances around school and walks at church and home. She is a whole new child since we got the chair, very active and very involved. She would not be otherwise. It does ware her out propelling with her arms, so she uses her legs to propel herself. It works ok at school as she gets plenty of rest, but at the store, dr's office, where there is a lot of traveling, we do have to push her.
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