Diet Questions

• By AmosB
• Posted May 27, 2008 at 4:31 pm

Jen-

Our daughter 5 was dx at 2, MCD then FSGS, and we have ALL been on a low sodium diet (2000mg daily) since. When I was pregnant with her I swelled really bad. I was eating what I wanted and this included salty things. Since the dx we had another other child and I didn't swell once while pregnant with her...the difference was the second time our whole family was on low sodium. We have stuck with it and tend to let her have the salty stuff in moderation.

Just yesterday at a BBQ we had to remind her to get a plate put some chips on it, eat it and then be done....as we all know it is so much easier to graze and get out of control with those kind of munchies. At least this way we have a bit more control over the amount along with not feeling like we should say NO!!!!

She is in remission and our nephrologist encouraged us to stick with it for the overall benefits to anyone's health. His theory is that she could relapse at anytime and if she is on a unrestricted diet (free reign of salty stuff) it will make her swell more than if she is on a low sodium diet all the time. Once you are on it awhile it is funny to eat out or at other peoples houses, all you can taste is the salt.

Good luck,
A

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• By AbbyMom
• Posted May 28, 2008 at 12:03 am

Hello, my son has had NS since he was a toddler, he is now 7. We pretty much stick with a low salt or no salt diet all the time. Our Neph told us it was easier that way, otherwise kids get confused as to why they can have salty things one day and not the next. He said salt wouldn't cause a relapse, but would make him retain fluid, which leads to swelling, and that is uncomfortable. I can relate to the frequent relapses. My son relapses alot, in the last 2 years he has been unable to get off of prednisone without relapsing. It is very hard to manage all the side effects of the meds as well as the diet restrictions. But it is easier if we all do it as a family. Feel free to email me if you have any other questions. Laura

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• By myboynadiva
• Posted May 28, 2008 at 8:41 am

~Thank you guys! Abbymom... you answered exactly what I was wondering... Can salt cause a relapse?... I guess I didn't really explain myself that well... just confused... we usually don't eat a lot of salt to begin with... I just let Keagan have cheese and chips periodically... I just was wondering why Keagan is relapsing so soon after being off the meds... it's like clockwork... 2 weeks and his levels are elevated again... so frustrating! Thank you so... much!

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• By cacsjr
• Posted May 28, 2008 at 8:48 am

We're in the same boat as you. My 2 year old has been on prednisolone since the end of January; we are in the midst of weaning him off for the second time (in conjunction with some other meds). We've seen 2 nephrologists who both have recommended a low salt diet all the time. It is just too confusing for the children to understand why they can only have salty foods some times....and harder to stock your pantry. One doctor was much more understanding about the fact that once in a while (ie at birthday parties or even at home) you can give them foods that contain some sodium (ie. hot dogs or chicken nuggets), especially when they are in remission. But we have really been trying to stick with fruits and veggies instead of all the prepackaged foods and even baking on our own.

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• By AbbyMom
• Posted May 29, 2008 at 10:47 am

No Problem, glad I could help. We are heading into the unknown right now. My son has been on prednisone for 6 years now. With the last 2 years being the hardest relapse wise. At first he would relapse like your son soon after stopping the meds. Within weeks, then it went to days and now he can't get off prednisone. He relapses when he gets down to between 5-10mg. He is at 5mg right now and has been a trace every day. His Neph wants us to stop the pred this weekend, and see how he does. I do not however hold out much hope that it will last. I guess we shall know soon enough.

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• By duker
• Posted May 31, 2008 at 7:09 pm

Hi , my daughter is MCNS /steroid dependent. We too are ALL on the 2000mg sodium all the time. I also agree that it is too confusing to tell her she can have something sometimes and then when she relapses (often :( ) she cannot. She is 6 and was dxd at 2.5yrs.

My neph also said that too much salt would NOT cause a relapse but would make edema an issue if/when she does relapse.

Abbymom- my daughter sounds like your son. her last 2 yrs have been horrendous and she is now on pred/prograf/and cellcept. the steroids have stunted her growth and she is terribly uncomfortable with red hot cheeks. Constantly relapsing...yet will spontaneously remit too!

What is your son's current meds? just looking for ideas.. they are prob. going to do a 2nd round of cytoxan, then rituximab... and if those dont work they will remove her perfectly working kidneys (GFR=fine .3creatinine) and put her on dialysis! I am at wits end.
thanks!

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• By myboynadiva
• Posted May 31, 2008 at 11:26 pm

~Thank you all for your responses! It is so... comforting to have other parents to talk to...
~I just talked with my sons neph yesterday and she wants to see Keagan w/in the next couple of weeks... She said we need to come up with a new plan of action together... Keagan has relapsed and I have to touch base with the doc tomorrow... I don't know what that means... new meds? kidney biopsy? We just recently found out that my husbands Uncle has FSGS... is that hereditary? From what I have read, it is... am I right?
~Thanks again for all the response... I just wanted to make sure that sodium wouldn't put him in relapse... I would have felt terrible cuz I let him splurge at a b-day party and then the next day we were out on the boat with another family who had cheetos... :P My son's favorite!!!

~jen~

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