How old is your child and what issues are you currently facing?

[KelliC_NKF]

How old is your child and what issues are your child and your family currently facing?

[mbhnyc NKF Ambassador]

My daughter is 9 years old and 5 years post transplant (living donor). We deal with typical low-immunity issues brought on by her meds. She also has frequent diarrhea. Recently, she was diagnosed with ADHD and a learning disorder (Math). Thankfully, her kidney function has been solid. We still get monthly labs.

[KidneyKommando NKF Ambassador]

Hannah is 18 and just started college. She is having the typical low-immunity issues due to being in a different environment and keeps getting a yucky virus. Luckily we have fantastic nephrologists who take great care of her!

[JMRC]

my son is 15 and recently diagnosed with CKD, early at stage 2. My main concern now is getting him used to low sodium diet ordered by his nephro and understanding the diet so that as he gets older he can ultimately take care of himself the right way to slow the progress of CKD.

[KelliC_NKF in reply to JMRC]

I'm sorry to hear about your son's diagnosis with CKD. It's great its early stages and hopefully can be managed well for many years. Low sodium diets can be difficult since salt is found in so many foods. Here's a few good resources that might help you and your family:

kidney.org/sites/default/fi...

kidney.org/atoz/content/sod...

Be sure to connect with a dietitian for individualized recommendations for your son's unique dietary needs. His nephrologist may be able to recommend a dietitian or you can search for a dietitian in your area at eatright.org.

[JMRC in reply to KelliC_NKF]

Thank you so much! This is great information. We have definitely been shocked at the sodium level in different foods. We’re learning a lot! I really appreciate this!

[Tlily]

My daughter is 14 and was diagnosed with ESRD a few months ago. She is now on dialysis and getting the additional vaccines needed before being activated on the transplant list. We are dealing with increasing her protein and iron levels while on a vegan diet, and also have to giver her higher sodium foods to keep her sodium levels up. She also has a huge needle phobia that needs to be managed with the help of her psychologist before transplant.

[KelliC_NKF]

Welcome to the community and thank you for sharing your story! I'm sorry to hear your daughter is on dialysis. How is she handling it so far? Sounds like she is doing peritoneal dialysis at home since needles aren't an issue currently? Diet is one of the hardest parts of coping with kidney disease - enlist the help of a dietitian to help make sure your daughter is getting all the nutrients she needs! For some general information on a vegan kidney diet visit: kidney.org/atoz/content/veg...

[Tlily]

She's on hemodialysis so we travel to the clinic 3 days a week. Currently all her labs are drawn from her port so the only needles right now are the vaccines. She needs to be ready for the frequent lab draws after transplant.

We are working with her dietician and her numbers and weight are getting better.

[KelliC_NKF]

I'm glad to hear her labs and weight are getting better! I wonder if the hospital has Child Life Specialists or a pediatric transplant social worker to help work with her on her fear of needles. It's a common fear, so hopefully there are some supports in place! Also perhaps there are other children at the hospital who she might be able to meet with who have frequent lab draws as well. Wishing you the best!