Can anyone tell me how to live with this edema? My daughter is going through a bad relapse at the moment, and has less pee and more puff!
I try to stay positive, and we keep her on a very low salt diet, but sometimes there is nothing else you can do!
The one tablet of lasix didn;t work at all as her albumin must be very low at this point. All day the kid cried for pizza, and I had to cave in, I mean how much can a 5 year old take...she was sooooo happy afterwards i guess it's worth the water weight???/
Anyway got any tips beside the low salt thing? Does excersise help...anything? It seems like waiting for the prednisone to kick in is worse than anything...and it's only been two days...I think they waited too long this time...oh well.
Thanks.
Laura
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Swelling and dealing???
- By lalo
- Posted October 22, 2009 at 7:31 pm · 4 replies
- In Children with nephrotic syndrome
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- By ChrisandMom
- Posted October 23, 2009 at 4:14 am
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When Chris gets edema they lock down his fluid intake to reduce stress on the kidneys. He is lowered to 1200mg sodium and 1-2 liters total fluid until he's negative and the edema passes. As to the pizza fix... theres ways to doit yourself that can help. Especially if she gets interested and creative. Thankfully Chris' passion is cooking (not so thankful to me cleaning up the messes or being a tatse tester, LOL).
I know that heartbreaking cry/scream/whine for the favorite forbidden foods and it kills me to say no. But it is such a water retainer, our best solution was to get him involved in the kitchen.
he has a sauce he makes that has about 50mg sodium in 1/2 cup. He uses fresh mozarella and veggies. The bread is the worst part, sometimes he uses tortillas, or bagels, and we have made homemade dough before using sodium free baking sodas and powders.
It's a headache at times, like when we are on the run for his medical appointments and dont have snacks. But the diet part does get easier. Can even do fast foods for him on occassion because he learned how to order them to lower the sodium.
Keep your faith, it will see you through.
Cheri
- By Kristie13
- Posted October 27, 2009 at 11:01 am
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Waiting is the hardest part, but that's really all we can do besides making sure they eat well, and it's tough to tell your child that they can't eat what everyone else eats. Sometimes I can't help but cave either. It's hard to always seem like the bad guy when it comes to food and it gets old day after day, especially when we have to watch them swell. We can only do so much though. It's always in God's hands to protect our children. Try to have faith in his plan for your daughter.
- By XTHATAGRLZX
- Posted October 27, 2009 at 8:19 pm
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IF SHE IS SWELLING UP WATCH HER FLUID IN TAKE AND HER SALTS BECAUSE THE MORE SALT THE MORE IT MAKES U THIRSTY. WHATS THE DOSAGE OF HER LASIKS(WATER PILL) SHE IS TAKEING SOMETIME U CAN GIVE HER 2 TO HELP BRING DOWN THE SWELLING. PLUS IF AND WHEN U GIVE TO HER MAKE SURE U HAVE NO PLANS ON GOING ANYWHERE CAUSE WHEN NATURE CALLS IT CALLS. IF U WANT TO TALK MORE ON IT PLEASE EMAIL ME JOURSEY@GMAIL.COM - AMBER
- By lalo
- Posted October 27, 2009 at 9:09 pm
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thanks everyone...she's finally down to trace...but she's peeing out all the swelling as we speak :)
It takes her sometime to get it off her belly though, and they started her on hydrocholorathiazide (spelling ??? you know what I mean)...3 x per week...to help with that.
It's always so tough that swelling...without it I think I could manage this so much better...it's so VISABLE and doesn't allow me as a mother to see anything but how different my baby looks.
now she's back to school tomorrow...let's hope she can hold out a little longer without a cold this time...argh.
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