Stressed: Hi everyone! My son is... - Parents of Childr...

Parents of Children with Kidney Disease

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Momzilla profile image

Hi everyone! My son is 8 months old and was born with only 1 functioning kidney and the functioning one has hydronephrosis. He is on similac pm 60/40 (low potassium formula) and on low potassium diet. His potassium has been climbing slowly over the last few months. I’m so terrified for the future and having a possibly rebellious boy how doesn’t follow the diet. He has also been going through bouts of constipation which I’m thinking is not helping his potassium to decrease. How old are your kids with kidney disease? Is it as hard as I’m imagining? I’m sure every kid is different in their disease and personality but I guess I’m just trying to predict the future in hopes it will help me feel better about his life.

8 Replies

Hi. I totally understand your desire to want to predict the future. I may in fact be guilty of doing it myself. It’s human nature. I caution you to resist the urge to focus too much on the future. It will end up driving you crazy. My son was born with CKD. I’m not going to sugar coat it. It has not always been easy. At times it’s been challenging and scary. But we’ve always managed to work through it.

Our family has always incorporated our son’s diet into our family’s diet. That way it became a lifestyle for the family and not a special thing forced upon one member. Honestly, the modification of our lifestyle diet was actually healthier for the entire family. We just don’t have food in the house that is not good for him (ie: soda, spirts drinks, bananas, potatoes, potato chips, chocolate etc.). At first it was extremely challenging and we struggled. But now, it’s just who we are. I won’t lie, my husband and totally cheated and ate the no-no foods when we went out. We just didn’t have them in the house for daily consumption.

When our son was a baby/toddler our biggest challenge was getting well-meaning family members on board with the dietary restrictions/needs. Another challenging time was when he was on dialysis. That lifestyle diet was the most difficult to incorporate into the family because it’s so bland and limited.

I encourage you to focus on short term goals and concerns in order to not drive yourself crazy. Also work to develop a positive and open relationship with your medical staff. They will become so valuable in helping your wade through the waters of CKD.

My son in preparing to leave for college in the fall. I find myself worrying about him getting a good job so he can have “good” health Insurance. I need to stop because he still has 6 years left on our health insurance. I guess what I’m saying is that in the end you will always have something to obsess about. Focus on the good you have today. Find a positive in the small things that are close to you today. Be conscientious and aware of the concerns and worries but remain in the present while planning for the future.

Yikes: One Final Thought- be open to going to a counselor. It’s a great way to get honest feedback in a non judgmental place.

Momzilla profile image
Momzilla in reply to TakTmkMrk

Thank you so much. I was just think about looking for someone to talk to. Hope your son is doing well and good luck to him in college 😊

AHP2018 profile image
AHP2018NKF Ambassador in reply to Momzilla

I'm sorry you are feeling stressed. I agree that it is best to not look too far into the future but instead focus on the positives of now. It's hard to do, but important so as not to unnecessarily stress yourself out. My daughter is almost 13 and was born with kidney disease and had a transplant almost 12 years ago. Taking medications, doing lab work and visiting the hospital often is something she has always done, so she doesn't really question any of it now.

I agree that it is helpful for your whole family to adopt your son's diet. We have done this with our daughter. For 11 years we have all stopped eating one hour before and after she takes her transplant medications, twice daily. In that way, she does not feel singled out or angry that she is different. This has become more and more important as she has gotten older and really doesn't want to be different. You will figure out the best way for your whole family to handle his illness, but hopefully you will not let it run your life. We are here for you!

Momzilla profile image
Momzilla in reply to AHP2018

Thank you so much for sharing your experience and advice! 😊

I’m sorry, it must be extremely difficult at his age. I’m kinda new to this and my son was 14 when he was diagnosed with CKD. we also adopted the diet into the whole family. From the beginning I’ve taught him everything I’ve learned along the way: Serving sizes, foods that are surprisingly high in sodium, and especially go to foods he can count on being low sodium. Your son is young but only knowing this diet might be beneficial? My son adapted much better than I thought. He certainly gets disappointed sometimes when he can’t have something every once in a while.

Luckily we have family members and even his friends parents that go out of their way to accommodate his diet.

No matter what the circumstances are when your son gets older, you will make it work. That’s what we do.

Good luck!

Momzilla profile image
Momzilla in reply to JMRC

Thanks so much for sharing and the positivity. Hope your son is doing well.

Hi there...I just want to tell you that I totally understand how you are feeling. My son is 7 and was diagnosed with nephronophthisis recently with 20% function and not too far off from needing a transplant. He was born ckd, and it was a total fluke that he was diagnosed through a food allergy test panel. Total shocker.

What I'm finding is that the worst part is not knowing, and even if what you find out is not good news, it's still better than not knowing.

We had to put our son on a low potassium diet a few months back, and I found that giving him the info and letting him make as many decisions as possible was helpful. I think it gave him more control in the situation. Now that he has the info, he is his own little advocate. Every once in a while he will ask if he can have a few potato chips or something like that, but he really only has a few and then he is content.

The fact that your son will not know the difference will help him form really solid habits, so the times that he wants to go rogue - cause lets face it - all of our kids will do that at some point...the good daily habits will allow for that.

I love what TakTmkMrk said in their response to you ..."I guess what I’m saying is that in the end you will always have something to obsess about. Focus on the good you have today. Find a positive in the small things that are close to you today. Be conscientious and aware of the concerns and worries but remain in the present while planning for the future."

I couldn't agree more. I found that by writing down a list of the big concerns helps get them out of my head. If there are things at that moment that I can do to help make that concern better, I write that down under it and figure out a way to take action. If not, I acknowledge that and it helps me release the concern for now.

You are doing an amazing job (())

Thank you so much for this!! Every little bit of encouragement helps. Hope your son is doing well ❤️

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