Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Hi Jill: I sent you an e-mail off list. Did you receive it? Also, my 17 yr. old OI, POTS, HEDS w Marfans has developed petechia, about 15 on her legs from groins down. They are not situated in joints but are primarily on muscle areas. Also, about 2 weeks ago I noticed her having the occasional small bruise, size of dime or less, of unknown origin. Seven days ago her Florinef O.1mgm was increased to BID, 8am and 6pm. Has anyone ever experienced this and is this a consequence of increasing the fluid and salt retention. Additionally, approximately 3 weeks ago she was stated on midodrine 10mgm I believe, once a day Mon. to Fri at 4 p.m. and 3 times a day Sat. and Sun (non school days) when she does not take the long acting Dexedrine 10mgm. Has anyone experience this. These petichiae very much resemble tiny, tiny spider veins. It certainly would make sense to me that increased vasoconstriction with Midodrine could cause miniscule bleeding from some surface vessels. I am taking her to the paediatrician today but I know he is not familiar and wondered if anyone could shed some light or had this occur. The midodrine is very, very helpful and she notices a large decrease in fatigue but her greatest joy has been the ability to relax in a bath and soothe her muscles without getting lightheaded, woozy and totally exhausted when she gets out. That may seem like small potatoes to other folks but it is a huge, huge thing to her. Any experience others may have had or guidance would be appreciated. With thanks! Bernie, Totonto Quote Link to comment Share on other sites More sharing options...
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