rmlyonsfamily Posted January 13, 2012 Report Share Posted January 13, 2012 Kayleigh is recovering well from her collapsed lung on November 29th. She went back to school last week, and so far so good.BUT...Her hands and fingers have been turning blue more often than they used to. I mean the ENTIRE hand and all the fingers.... EXCEPT the tip of her ring finger (from the last crease on up) on the left hand, and it's pure white! Very strange to see. Anyone else see anything like this? Quote Link to comment Share on other sites More sharing options...
pulp Posted January 13, 2012 Report Share Posted January 13, 2012 That's called Raynaud's phenomenon. I'm sure there's quite alot on google about it! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 13, 2012 Report Share Posted January 13, 2012 Yes, That definately is Raynauds and those are the symptoms I get, Kaybers Mom! I think it is relatively harmless just uncomfortable.... but doesnt hurt to speak to a Dr if it is worriesomeBren Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 13, 2012 Report Share Posted January 13, 2012 Actually in Kahleigh's case it could be worrisome... It is indicating very severe vasocontriction and hypovolemia. I have the same problem, but to have the entire hand involved is VERY unusual and severe. I have been hospitalized for SEVERE Reynauds more than once. They usually want to rule out blood clots/anatomical heart issues/and ensure that the extremities won't be lost if the blood flow isn't restored.Is her blood oxygen OK as measured by a pulse oximeter? Are her symptoms worsened when her hands are blue? Is she being treated for Reynaud's, like with a beta blocker to open up and relax the blood vessels?I would consult with any doc that "gets" her bigger picture. For now, lots and lots of fluid and salt so that her hands get the message that there is enough blood to go around. Nothing that vasonstricts, like caffeine. Limit stress. I don't know her med profile, BUT magnesium (500mg) every night has been extremely helpful to me in relaxing the blood vessels. (I can't tolerate ANY beta blocker.)Let us know what you find out.Julie Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 13, 2012 Report Share Posted January 13, 2012 Wow Julie....I will take that under advisement also.....last time I saw the auto specialist I showed him my hands which were turning purple and white and he said it wasnt that serious just annoying Bren Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted January 13, 2012 Author Report Share Posted January 13, 2012 Julie - thank you. I should have added that we know she has Raynaud's. We've just never seen it to this extent, especially where the tip of one finger stays bright white. Typically - a pulse oxymeter isn't accurate on her. It always reads way lower than her actual 02 sats. Makes it difficult to tell when/if she's really ok or not. She doesn't drink caffeine, and no, she's not on a beta blocker b/c her heartrate runs too low as it is. They are concerned the beta blocker would drop it even more. Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 13, 2012 Report Share Posted January 13, 2012 Bren- forgive me. I wasn't trying to be mean-spirited, just sharing my experience. Reynauds CAN sometimes be quite serious especially if in indicates an underlying heart/lung/or blood clot issue. Patients actually lose their peripheral limbs from it. Your doc is just plain wrong. Don't you love how they dismiss us ???K Mom- Duh! Of course, the pulse oximeter wont work. I often have the same problem and in severe Reynauds, it can't be used to reliably measure blood gases. BUT, I can usually find one finger or toe or even my ear lobe that will provide a reliable reading. I was just concerned that blue peripheries may be indicative of her lung issue returning...My son has that severe bradycardia & can't tolerate beta blockers either. I am afraid that the magnesium may have the same effect. Has she tried florinef to boost blood volume?Julie Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 13, 2012 Report Share Posted January 13, 2012 Julie- its ok you weren't anything but informative as always! The dismissals of very worriesome symptoms does get tiresome......Bren Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted January 13, 2012 Author Report Share Posted January 13, 2012 Julie - she is on Florinef - a LOT of it! She gets 0.3mg daily. She's also on 7.5mg of Midodrine 4x a day. Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 14, 2012 Report Share Posted January 14, 2012 Sounds like she may have low flow POTS, characterized by excessive vasoconstriction. Have any of her docs ever recommended lorsartan? Might help.BTW, my son used to take that high of a dose of florinef. It works best with lots of salt (I think Mack took 6 Thermotabs a day) and lots of extra water/gatorade, etc. Also, I hope her docs are checking her potassium level. Florinef can drain it- especially at that high of a dose. Julie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 14, 2012 Report Share Posted January 14, 2012 POTS people get raynauds as a reflext mechanism to try and maintain blood flow to the brain - although its fairly useless. Bluing is usually reflex mediated. Quote Link to comment Share on other sites More sharing options...
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