For me to research later : http://www.dysautonomiainternational.org/page.php?ID=30
For my own experience, I had symptoms of POTS in my growing teen years and into my early 20s and now it is completely gone (well, pretty much - so long as I eat and drink properly). So, my hope is that for my daughter, this will be something she outgrows. Also, I hope that fainting is something she can avoid by recognizing how to treat POTS as well as how to more safely and how to recognize signs.
More research to do, but we'll take any help we can get. We don't want our fragile girl dropping to the ground due to this. She had a black out session yesterday, but it was very short, and she was sitting. First steps, we'll be increasing fluids, electrolytes, and doing some additional reading and research!
Again, very hopeful she has a mild version of this to deal with, as her mom and aunts did.
Homeschooling and Bracing - is it helping?
You know what. It IS helping! Kiddo still battles with shoulder instability, but by staying in a dual enroll program where she only does 1 class at school, and the rest at home, her dislocations have cut back dramatically. Previously, she was not able to get through more than 2.5 hours of a school day and she would begin repeat, painful dislocations. The tearing feeling inside the joint was getting worse as these dislocations increased and reducing was getting more difficult. Now she has some days where she is not dislocating at all, and others where she does dislocate, but only 1-3 times instead of many.
The brace seems to have helped reduce the number of dislocations and the pain in dislocations has gone down since the brace has been added. So, she can't attend a school day, but there is some improvement. She is still in physical therapy and now the focus is on core stability and positioning to help support the shoulders in all movements. This will require a lot of relearning basics and I don't foresee it being easy for a 14 year old to pick up on, but small steps and improvements.
Still, even with some areas of increased improvement, the limitations are long. We don't know what to do next. The genetic specialist advises surgery and he has referred us to surgeons. We have been to see orthopedic surgeons at IBJI and at Rush and they do not feel that Kiddo is a candidate for surgery. They tell us the surgeries won't hold, won't work. So genetic specialist says that we need to keep looking and consider Cincinnati. Others report Steadman Clinic and Boston. Success rates are so low, and our daughter is still growing, so we are very torn about what to do next. At the moment, since we do see some improvement in our current plan, we will continue this path in hopes it propagates more healing and strength building in the upcoming months. Perhaps, if we can get her through these growing years before surgery, her odds of successful surgery will be higher? We will plan to talk to more specialists in the upcoming year, as well.
The brace seems to have helped reduce the number of dislocations and the pain in dislocations has gone down since the brace has been added. So, she can't attend a school day, but there is some improvement. She is still in physical therapy and now the focus is on core stability and positioning to help support the shoulders in all movements. This will require a lot of relearning basics and I don't foresee it being easy for a 14 year old to pick up on, but small steps and improvements.
Still, even with some areas of increased improvement, the limitations are long. We don't know what to do next. The genetic specialist advises surgery and he has referred us to surgeons. We have been to see orthopedic surgeons at IBJI and at Rush and they do not feel that Kiddo is a candidate for surgery. They tell us the surgeries won't hold, won't work. So genetic specialist says that we need to keep looking and consider Cincinnati. Others report Steadman Clinic and Boston. Success rates are so low, and our daughter is still growing, so we are very torn about what to do next. At the moment, since we do see some improvement in our current plan, we will continue this path in hopes it propagates more healing and strength building in the upcoming months. Perhaps, if we can get her through these growing years before surgery, her odds of successful surgery will be higher? We will plan to talk to more specialists in the upcoming year, as well.
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