How does kidney disease affect your child’s day-to-day life?

[Vesa]

Happy Monday! Hope everyone had a lovely, lovely weekend.

Today we ant to know what activities does kidney disease affect the most? What things does your child find most challenging when they have symptoms?

[Bugslife]

My son struggles physically and emotionally with his kidney disease. The hardest part is the frequent infections and school. My son struggles to stay caught up in school. He finds it very discouraging going to school because he is sick all the time. If you ask him what one thing he wants he will tell you not to be sick anymore.

[Undercoveravoca in reply to Bugslife]

My daughter feels the same way 😥

[melissamae_ia]

My daughter is really not limited at this time. She has never been able to do much running without tiring easily. She will complain of her legs hurting. When she is very active during the day,She will have to take extra time to rest and sleep, compared to an average child.

[ShareYourSpare]

The biggest thing my son struggles with is staying on top of his water intake. Not really an "activity," I suppose, but it's a huge struggle. At a minimum post-transplant, he needs 1,500cc daily to keep his kidney happy. He can easily achieve this goal in a day, but it seems like it wouldn't happen without constant reminders from his teachers, school nurse, friends, his dad or me. Our son just turned 7 earlier this month and is in first grade; I realize it's asking a lot of him at this age, but this has been his "normal" for so many years that it would be nice if he would just take care of business without constant reminders. I feel like a broken record! Yes, stopping to drink interrupts what he's doing, but it doesn't take him long to drink what he needs to drink and then he can get back to learning, playing, eating, etc.

My son knows that as far as activities/sports are concerned, he cannot play anything that is too rough / too much contact with his abdomen; however, I also recognize that it doesn't take a team sport for kids to get rough with one another. My son knows it, too, because I have heard him tell people to stay away from his stomach many times and then he explains why! He still enjoys playing in gym class like all the other children and runs incredibly fast!

Staying healthy when you're immunosuppressed is an obvious challenge. Especially as a child who goes to school with so many other germy little humans! Thorough hand washing rather frequently is a must and all the other germ prevention measures, too. His school and teachers are great about keeping me informed when there is an illness in his classroom and doing extra cleaning to keep him (and all the children) safe.

The biggest challenge is staying healthy... and getting healthy if/when he gets ill. It takes a long time for his body to recover from a simple cold!

[Alexsmom]

I think the chronic fatigue that this disease brings along with it is the most challenging for my son. He used to be the type of boy that never sat still for long - always busy doing one thing or another. Now he spends alot more time on the couch, or since he's gotten his license, driving around. He's not anywhere near as active as he used to be. He tires easily and isn't as motivated to ride his bike, go fishing, etc. And, because he's a teenager, telling him to go to bed earlier falls on deaf ears!

[MCMom]

When he is swollen, my son tires easier and needs to sit, rest, and nap more often. But typically the nephrotic syndrome doesn't affect his activities. Our most challenging thing is adjusting to the low sodium/low fluid diet. No more restaurants, pizza, and yummy snacks at school. He gets really bummed that he can't have what other kids get to have and at 4 years old, he doesn't understand what those things do to him, just that he can't have them.

[Samhan]

As of right now, my son doesn't have a lot of limitations as far as activities since he's only 2 and was diagnosed very early. The most challenging thing is him not being able to tell me exactly what's wrong or hurting him. If his blood pressure is high, he doesn't know what's going on so cant express it to me.

[mbhnyc NKF Ambassador]

Post transplant my daughter's day to day gets affected by how often she gets sick, particularly in the winter. Otherwise she is free to do whatever she wants. We are more careful with food hygiene and she has to be well hydrated. Otherwise, she gets annoyed when she has to get labs drawn in the morning and has to be late for school - she hates getting attention for medical issues.

[sarahtar]

I can't think of a single aspect of my son's life that isn't affected, though sometimes it's hard to know what is from the renal failure and what's unrelated. He's so very far behind peers - academically, socially, physically, every way - at least partly due to spending the bulk of his first two or two and a half years. He still eats via gtube. He gets sick quite often. He has to stop what he's doing to pee every two hours. He has low tone, which means he gets tired easily. Some of his meds have side effects he deals with.

[ljackson]

My son's kidney disease has always and will always be a part of his daily life. He pushes through when he doesn't feel well and takes his medicine like a champ. He wears an alarm watch to remind him to use the restroom and to take his medicine. His most challenging days are lab days as he doesn't like the needle pricks and blood draws. He does most all of his other procedures and tests without complaint. He's a real trooper!

[Pinky4]

From an activity perspective she is not limited at this point. She feels fine and is an active 12 year old. The challenges we have still new to this diagnosis are the lifestyle changes, sodium restrict, taking medicines daily.

[3pigsny]

My daughter is 3 years old and when she's on steroids it's very difficult for all of us. In the beginning she becomes very tired and irritable. We find that she has trouble keeping focus and looses her temper very quickly. There's lots of uncontrollable crying and yelling. When she tapers, it even becomes harder for her.

[NephMom]

My child has recently had a very bad relapse. His most difficult challenges have been food. The high dose steroids cause so much hunger, but when spilling protein his sodium is so limited. He has cried so many times because he craved salt so bad.

The steroids also cause such an emotional roller coaster at all times.

Currently, we are trying our best to stay healthy during sick season. He is still on heavy steroids, and just had two rituximab infusions.

[Justaconcernedmom]

I feel like with my daughter we have a hard time with day to day activities when her blood pressure is high. When its high she doesn't understand why she doesn't feel well. Since higher blood pressure causes the a higher level for pain tolerance, we also struggle with knowing when she is actually hurt. When she was three at daycare she pulled a small bookshelf over on her self and i remember the teacher saying, well she couldn't have been that hurt she didn't even cry. That teacher was new and didnt understand that since part of her medical history has that she had blood pressure, she may not respond to pain in the same way other kids were. Luckily she was ok, but needless to say the teacher/administrator got an earful from me as soon as I got there for no knowing her history. As a parent if let me know that I can't assume that everyone will know everything, and that I would have to advocate for her, so people would know about her.