Where do I start?

[Humpadink]

Hi, I am new to the group. My 5 year old daughter had a kidney removed in January and we found out a few days ago she has CKD. I am doing research but just wondered if anyone had any tips on what I can do to help her? Or any recommendations on good places to get information? The nephrologist said low salt diet but I have also read about potassium etc.. is it necessary to follow a strict CKD diet at stage 2? They think she is stage 2 but are running more tests. Is there anyone else on here who is stage 2 or has been? Will she be ok? Does CKD always progress to stage 5 so a transplant is required? I am so scared for her and struggling to keep it together. I had a baby 8 months ago and they are testing her incase it’s hereditary. I just can’t believe it and could do with some kindness and pointers on how I learn more about the best way to help my 6 year old and what the future will hold in terms of how CKD progresses. I thought the nephro said with the right medication it won’t progress but it’s all a blur...thank you in advance Xx

[Hidden]

Hi and welcome. I'm not sure where you are but if you are in the USA go to the davita.com website. You can register for a free, 90-minute Kidney Smart class in your area. You can learn a lot about meal plans, slowing the progression of CKD and holding off dialysis for as long as possible. The class is taught my a professional with knowledge of kidneys and CKD. You will get a lot of resources to help you learn to be the best advocate for your daughter and help educate the rest of the family regarding what needs to be done. If you aren't in the USA you can go to kidneyschool.org and view the modules there that will explain a lot about CKD and the modalities available to you should she get to ESRD.

The DaVita website will also provide you with a lot of ideas about kidney-friendly meal plans for everyone. Keep in mind that no recipe should be taken at face value. Based on lab work each recipe should be tweaked to make adjustments for concerns regarding sodium, potassium, protein, calcium, and phosphorous. You don't want to eliminate these minerals but you do need to make sure that you don't overdo them. Ask your nephrologist for a referral to see a Renal Dietitian. Bring all of her lab values with you and you will be able to design a meal plan that will help you in this area.

Best of luck.

[Beckett24]

Hi, Humpadink, you need to educate yourself with the latest information and not depend on the opinions of others. I went to the DaVita Kidney Smart class and my wife and I were the only ones in the class. The teacher was a young girl showing us slides on CKD on an iPad. When we asked questions, she Googled them on her iPad. I bought the latest and most comprehensive book on CKD which came out on January of 2019. Here is my previous post about it and what it did for me:

healthunlocked.com/nkf-ckd/...

Note that the renal eating plan does not start until Chapter 34. Even if your precious daughter is at Stage 2, it is never too early to start a proper CKD program, especially when the CKD person is only five years old. She has a life long battle ahead of her which she can win if she fights. Best wishes.

[Ladybug_05]

Hello Humpadink! Your daughter can lead a full and exciting life while managing CKD. It's never too early to start incorporating a renal-friendly diet and getting a nephrologist on board. Usually, the big three minerals to watch out for are Phosphorus, Potassium and Sodium/Sodium chloride (salt); however, it is highly dependent on her labs, and due to her age, a true renal diet might be too restrictive due to her still growing and the restrictions of proteins and other types of foods that are otherwise considered healthy. I personally had this problem growing up, so my parents had to tweak my diet some to ensure I was meeting my nutritional needs.

With the right medication, diet and exercise plan, this will meld into a lifestyle and she won't know anything different. One thing to note, is that this lifestyle change will impact the whole family, and will also impact her wherever she goes.

In my experience growing up with CKD, my parents conpletely relearned how to cook so they could teach me how to make renal-healthy foods. I also had a hard time with it, since all of my favorite foods at the time (cheese, icecream, peanut butter, bananas, candy, burritos, etc.) were suddenly off-limits. It impacted me emotionally and I did not handle my life changing so drastically well at all (I cried a lot). One thing that my parents used as a tool, and something that might help you teach your daughter about her diet plan and give her some control over what she eats, is by using poker chips as currency. How it worked, was that both parents each had a set of poker chips at their house, with each color being a different amount of Phos. (Green was 1, Red was 5, White was 10, Blue was 20 I think), and I would be given however the equivalent of 1000 mg of phosphorus in poker chip currency at the start of the day. Each time I ate, I would give either my mom or dad the amount in poker chips that my meal or food item was worth in phosphorus. Once I was out of chips, I was done eating for the day, or my parents would make note of how much I went over. I was also allowed to "save" my left over chips for later, such as if I did great that week and had enough chips saved, I could get an icecream, or have mac n cheese, etcc. I also received 3 cheat days a year: my birthday, Thanksgiving and Chrismas- which I chose. For school, I would still count out my chips, but would keep them in a separate bag to give to my parents later. After a while, it just became second nature.

I sincerely hope that your family can get through this time of change. Good luck!