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Post by lorieann13 on Oct 12, 2015 1:27:27 GMT
My 12 year old dd was just diagnosed with Dysautonomia. She has POTS, Neuropathy, and sooooo many of the symptoms associated with this rare disorder.
Would love to know how you found the right team (cardio, genetics, neurology, gi) to treat the symptoms. Also if you stayed stable or got worse over time.
Any diet changes that helped some?
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Post by christine58 on Oct 12, 2015 1:31:52 GMT
I know of someone whose DD has this....she is on Facebook. Are you on FB?? I could PM you her name. She's very very knowledgable..came across her name in a planner group. There's a young lady near me who is in her 20's that she reached out to. Let me know lorieann13 Sent you a private message |
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nanaterry
Junior Member
Posts: 67
Jun 26, 2014 20:05:34 GMT
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Post by nanaterry on Oct 12, 2015 1:55:41 GMT
I have POTS. It has gotten better since 2008 when I was told that I had it. The first 2 years were the worst. I couldn't even stand up without passing out. The thing that has helped me the most is diet and excerise. Eating less processed food, going gluten free, and running is the best things I did for myself. This is not an easy thing to have, what works for one person may not work for someone else. If you need you can PM me. I will try to answer questions.
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Post by scrappinjen on Oct 12, 2015 3:03:45 GMT
My college roommate has this. She has found a lot of support through online groups. She is on facebook and if you are I could connect you. She is the sweetest soul and was an OT helping people cope with disabilities when she got sick. I am so sorry you are facing this with your daughter.
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Post by Patter on Oct 12, 2015 10:15:01 GMT
Two of my identical triplets have this. One was diagnosed 6 years ago, and one just got out of the hospital after a 10-day stay where she was diagnosed also. She could not even lift her head without passing out. The kind of physician you need for your daughter is an electrophysiologist. They generally work in cardiology offices but not always. What helps my daughter that has had it for so long is exercise and meds. Her sister that was just diagnosed is now on the same 3 meds her sister takes. It has allowed her to get out of bed and walk. Praise God! We saw her doctors two days after getting out of the hospital, and the electrophysiologist said the best things she can do is exercise and stay hydrated. There is a Dysautonomia FB page also. www.facebook.com/DysautonomiaInternational?ref=ts&fref=tsAnd my daughter was also able to work with TG Bears to create the Dysautonomia Awareness Bear. The bear is named after her.  Anyway, a portion of the proceeds are given to Dysautonomia International. www.tgbears.com/collections/awareness-bears/products/caitlyn-bearI am sorry your daughter also suffers. I ache for my girls, and I know you do too. Hugs and prayers, and feel free to PM me anytime! |
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Post by lorieann13 on Oct 12, 2015 13:12:51 GMT
Thanks so much for the replies everyone!
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Post by annaintx on Oct 12, 2015 13:17:25 GMT
My girlfriend was diagnosed a year ago with POTS. It's been terrible for her. She's on so many medications and the side effects of those are almost as bad as the untreated POTS symptoms.  |
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Anyway, a portion of the proceeds are given to Dysautonomia International.
