DawnA Posted November 2, 2005 Report Share Posted November 2, 2005 I have not posted much this past year. I have been to busy trying to feel well and manage my family. I have been really been struggling physically and emotionally. A few years ago my daughter Carissa 14 was diagnosed with POTS fortunately she is doing pretty good.My daughter Allison 10 has been diagnosed with Crohns and psychiatric problems which she has had since very young. She has displayed a lot of autonomic symptoms over the years. I have never pursued testing. Now she has all of the classic POTS symptoms with a 40 beat increase with poor mans tilt. Like her older sister was, she is a gymnast. She loves gymnastics and does not want to quit. Her sister had toquit. Aly has so many good friends on the team and loves to be active. I am hoping that she can continue to go at least for a few years with treatment. It is YMCA gymnastice and not very competitive. She has suffered enough in her short life especially with her psychiatric problems. This just breaks my heart.I remember when I was going through testing for MS and how many people told me I was so lucky that I did not have MS. Their intentions were good but the comment always upset me.. i really wanted an answer. Now I would give anything to have the MS diagnosis. Instead I have a heriditary metabolic illness that has killed two of my aunts and grandmother while in their fifties. Now I am waiting for another aunt who weighs 70 lbs and my mother to die. They are both very ill. Onset seems to be coming at a younger ages as the generations pass. What does this mean for my daughters??? The unknown is the hard part> Should they have children??will their children have this in infancy! It makes me so sad to see my children suffer and struggle. It would help if their were doctors available who know what they are doing...but their are very few. The one I saw at Mayo just quit so I will be traveling to Boston in January. For those of you who pray, please keep us in your thoughts and prayers.Dawn ANich Quote Link to comment Share on other sites More sharing options...
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