Help re kidney scarring/reflux/low salt diet please

[ilove]

My DD will be 7 in January, and at 15 months old was seriously ill with a urine infection. Further tests revealed that she had grade 4 refluc on both kidneys, and she went onto antibiotics daily to the age of 5. (Trimethoprim and Cefalexin), and any flare-ups she had penicillin.

Anyway, she had her appt at the hospital yesterday for all the routine checks and I thought they would discharge her. I was shocked to find that her BP is the high end of normal, and that she will never be discharged because of the scarring on the R kidney. They said that the episodes of pain and vomiting she still gets (fairly frequently, but no UTI or anything showing up on the dip-test at the times) are her kidneys trying to process salt.

Now, I cook from scratch 90% of the time, never add salt, she does like cheese and has bread and very rarely has 1/3 bag of crisps (because I'm mean and split one bag between three children

They've said no crisps again EVER and that they want her on less than 2g of salt a day...

Last night I ended up giving her egg, chips and salad because the lasagne I had made was too salty with the cheese etc. So, how can I reduce it further? Breakfast cereal seems laden with it, there is 1/2g salt in one slice of bread, and is it hidden in stuff like...erm...shop bought cakes etc? I usually make my own and will go buy unsalted butter today, but is there any point getting stuff like low-salt baked beans etc?

Help please??

duh...grade 4 REFLUX of course! Oh, and she has to have a glass of cranberry juice a day as well...fortunately she likes it!

My DD has some scarring on her kidney caused by reflux (has duplex kidney system and columns of bertrand) and serious kidney infections. One kidney much smaller (may have stopped growing after a nasty infection???) although both are working quite well.

We drink lots of cranberry and water.

I make my own bread and do not put salt in anything, as we often try to eat together.

Infact, I make most of our food from scratch inc pizza and fishfingers.

I've stopped her having certain b'fast cereals, she now has a not added ingredients type.

DD was allergic to trimethoprim, so we just had C. Although it took them so long to dx what the underlying problem was she was only on it for less than a year.

Good luck, I hope you can find what works for you.

Thanks...I have just spent over an hour at the supermarket tearing my hair out...WHY can't foods be labelled clearly!

I managed to get an organic gluten free cereal, and ready brek for her, and then some cheese that isn't too bad. Looks like I need to have a go at making my own bread etc....eeek

I have a bread machine, I got it for £5 second hand. I only got it to see how much I would use one, with a view to getting a new/better one that makes a bigger loaf.

I use it to make pizza dough, a healthy banana bead/cake that the Dc love.

Good housekeeping reviewed the Panasonic one (£99) this month and says that each loaf costs 52p to make, so if you make 3 loaves per week it will have paid for itself in one year compared to the price of decent shop bought bread.

I am asking FC for the panasonic one this year

Thanks...I think I am going to have to get one...I am gobsmacked at the amout of salt in everything!

bump!

Bumping for you as I have similar issues with my ds.

thanks!

Well, I've just been offered a breadmaker on Freecycle, apparently it is "like new" so I guess now I need some hints/tips/ideas and recipes!

Hopefully it'll come with the recipe books.

I started with the one in the book and just added less and less salt, to see if it made any diff- it didn't!

That is really good news. Happy baking!

I just collected it...and yes the recipe book is in there. It's only a little one, a Hinari Homebake I think, but it'll be brill to start with. The recipes seem to use a lot of salt...teaspoon and a half per loaf. I'll halve that to start with and see what happens.

Also, is it better to have the machine cook it for you or is it better to have it make the dough then cook it yourself?

Bump

I have the Hinari (not sure which though)

I'm lazy so I get it to do the work! If I want rolls or pizza bases I just use the machine to make the dough.

There is a typo/error on the banana and nut bread, it is NOT 32 tsp of baking powder! (In case you have the same book as me) I make this without salt and only using 5 oz of sugar, I add some dried dates to make it sweeter.

I am really sorry that I cannot be of help re the diet but I just wanted to let you know that I suffered chronic reflux as a child - undiagnosed until 16 - and had my left kidney removed at 23 due to considerable scarring and having a permanent kidney infection. I am completely healthy and fine and have a really busy life with 2 dc and my right kidney is doing a fab job. Don't know if that helps in anyway but just wanted to know I got through it all ok. I can't imagine how stressful it must be for you though.

OPh thankyou LW that is lovely to hear...well not that you had problems but that you are ok now!

Well, I made the first loaf last night and the third this afternoon...they've eaten two already! I have just been putting half a teaspoon of saly in and am going to try a loaf with even less overnight tonight. It looks and smells lovely anyway!

I blame my breadmaker for the size of my bottom! Well done for getting the hang of it so quickly.

If you are doing it overnight, I reccomend using the timer as if the loaf is left to completely cool in the pan it can become a little soggy.

I also now use (thanks to expat) the much cheaper dried yeast, rather than fast acting, I cannot tell any difference in texture and the DC def not complaining.

Hi there, I am interested in finding other parents with the same problem. My DD is 2 and was diagnosed with a grade 3 reflux 1 year ago. It is a real nightmare getting urine samples from her, she is still in nappies, and my efforts at gradually introducing the potty have so far been in vain, as she seems to have a psychological block with regards to peeing - I guess to due the pain and a stay in hospital caused by a bad kidney infection. Does anyone have any advice?