The Foundation for Children with Atypical HUS

Leg cramps

I saw some post has that their child has leg cramps issues, and wondering what u do about it. Anna gets them almost every week and they are usually in the evenings, sometimes they will go away with just a Tylenol. Sometime she gets really big pains and there is nothing helping until it goes away. They usually hurt around knee area on both legs. We did talk to our doctor, but they think this might be just growing pain.
Thanks
Sveta

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Permalink Reply by Cheryl Biermann on September 13, 2009 at 1:24am
Sveta, Hi! You probably saw me mention on the prayer site that Nathan had had severe cramping during dialysis. Sometimes this is his stomach, sometimes his legs. This has been caused by having fluctuations in his electrolites and/or them pulling off too much fluid during dialysis. For Nathan this has been related to low potassium and being too dry. This time I suspect it has been due to being too dry as we have had to increase his dry weight significantly in the last two weeks because he is gaining actual weight and not just fluid. I remember from years ago Anna had cramping in her back? I would ask her doctors if she has consistant problems with this if 1. it could be from electolite fluctuations and 2. if so, could they please monitor it more frequently so that her pain is minimized. Just an idea, it could be something else totally, but I think I would look into this area. Cheryl
Permalink Reply by Svetlana Finley on September 13, 2009 at 8:27am
Cheryl, our doctors know about Anna's cramps, but they can't figure what is going on. This time she doesn't have back pains it is usually around her knee caps, with back pains we was thinking was happening when she doesn't have enough fluids.Where on the labs i look for electolite? It happens usually at night time and we can't just jump and go get labs done.

Cheryl Christine Pallme Biermann said:
Sveta, Hi! You probably saw me mention on the prayer site that Nathan had had severe cramping during dialysis. Sometimes this is his stomach, sometimes his legs. This has been caused by having fluctuations in his electrolites and/or them pulling off too much fluid during dialysis. For Nathan this has been related to low potassium and being too dry. This time I suspect it has been due to being too dry as we have had to increase his dry weight significantly in the last two weeks because he is gaining actual weight and not just fluid. I remember from years ago Anna had cramping in her back? I would ask her doctors if she has consistant problems with this if 1. it could be from electolite fluctuations and 2. if so, could they please monitor it more frequently so that her pain is minimized. Just an idea, it could be something else totally, but I think I would look into this area. Cheryl
Permalink Reply by Cheryl Biermann on September 13, 2009 at 10:41am
Sveta, Nathan's doctors said the lites responsible for cramping are: potassium, calcium, magnesium are the ones I can remeber. Also, maybe she is a little dehydrated. It does seem the cramping is worse at night. We have found that the things that help while he experiences them are gentle massage and a little warmth, possible a heating pad for her? Good luck, poor kids just one more thing they have to endure.

Svetlana Finley said:
Cheryl, our doctors know about Anna's cramps, but they can't figure what is going on. This time she doesn't have back pains it is usually around her knee caps, with back pains we was thinking was happening when she doesn't have enough fluids.Where on the labs i look for electolite? It happens usually at night time and we can't just jump and go get labs done.

Cheryl Christine Pallme Biermann said:
Sveta, Hi! You probably saw me mention on the prayer site that Nathan had had severe cramping during dialysis. Sometimes this is his stomach, sometimes his legs. This has been caused by having fluctuations in his electrolites and/or them pulling off too much fluid during dialysis. For Nathan this has been related to low potassium and being too dry. This time I suspect it has been due to being too dry as we have had to increase his dry weight significantly in the last two weeks because he is gaining actual weight and not just fluid. I remember from years ago Anna had cramping in her back? I would ask her doctors if she has consistant problems with this if 1. it could be from electolite fluctuations and 2. if so, could they please monitor it more frequently so that her pain is minimized. Just an idea, it could be something else totally, but I think I would look into this area. Cheryl

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CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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