Just need some support

[Turtlepower88]

Hello all, my son is 7. He was born with CKD, he's currently in stage 2. He has reflux grade 5 bilateral, hydrophronesis bilateral, hyperkalemia, distended bladder, urinary retention and chronic constipation. They all kind of play off of each other and are either all controlled and keep his function stable or if one gets off track then it's like a domino effect. Almost instantly one thing is triggering another and he's not feeling well, his creatinine spikes and both nephrology and urology are worried and we're doing extra tests and blood work. I'm getting told at every appointment the goal is to keep his kidneys as healthy as possible for as long as possible. I manage his diet, his potassium as become pretty controlled the last year but too much of it or too much sodium still effects him quite a bit. He's on a bathroom schedule. I know that we could be in a much worse situation. We're lucky and blessed to not have to go to dialysis or a transplant center. However, I'm a single mom who manages all of this on her own while also just being a single mom who works 40 hours a week and do everything I have to do on that front. So trying to micromanage all the Dr appointments, keep tabs of blood work results, what he can eat and drink and can't and how much of what he's had in the last 24 or 48 hours to give him the best chance at being healthy. It just gets really heavy sometimes. I have support but nobody ever knows how to react or what to say when I try to talk about it. He had a flare up over the last week and to have my 7 year old sit there and tell me he thinks he had too much milk at school and then go over everything else he had to eat. I had to leave work because he was sick and then a couple days later he didn't feel well again and I was already so stressed out, I had all this mom guilt because I definitely feel like I wasn't patient enough. I decided right then that morning I needed to try to find some support. Somewhere others understand and a safe place to talk about it. I'm sorry this is so long. I appreciate you all. It's not my son's fault if he doesn't feel well, it's not on him if I'm stressed about it. I really hope I can find the support I need here so I can be able to be the best for him and I don't boil over anymore. Thanks again. 💚

[itzmich]

This is a lot to take on yourself ,especially with a child so young. I'm sure you are overwhelmed at times. Sounds like a very complicated situation. Maybe your doctor could recommend a dietitian it might be helpful. Also you need to take care of your self as well. Maybe a little therapy is needed to help you sort through it all. Keeping you and your son in a positive light.

[JackieJ_NKF Partner]

Thank you for sharing your story with us, for I'm sure it takes a lot of courage to do so. You're taking on a lot and some additional assistance may be able to ease your load. You should speak to a pediatric dietitian who can help you plan some of your son's meals, snacks, etc. If you have a local children's hospital in your area, think about reaching out for additional caregiving support services and guidance. And the NIDDK offers a great checklist for those caring for children with CKD: niddk.nih.gov/health-inform.... Hope you find some of this info helpful for you and your son.

[BearMama0321]

Sending hugs, mama!

Agree with others; ask the nephrologist for a pediatric renal dietician referral. At our children’s hospital center it is FREE. And it’s telehealth - which helps me (busy working mom of a 3 and 5 year old; 3 year old son has stage 3a CKD).

Other than that practical advice… just try to breathe. Come here. Vent it out. I have good days and bad days, too. Luckily my son is fairly stable for now, but there’s a long road ahead. And I do have my husband to support but all the medical management ultimately falls on me (another topic for another thread; love my husband and he and I are a great team but this is NOT one of his strengths!!!).

If you ever want to connect, send me a message. My son has one totally atrophied kidney - likely due to grade 3/4 unilateral reflux, further damaged by an undiagnosed UTI in the early part of the COVID-19 pandemic (we took him to literally dozens of doctors/emergency visits; no one checked his urine). I totally understand mama guilt. And feeling frustrated.

On the days you think you can’t do this… remember… you ARE doing it. Your son is lucky to have you advocating for him so diligently, and yes - it would be “easier” to not have this on your plates, but the two of you no doubt have grown so close on this journey together. And think about how you’ve stepped up to the task - a task no one would ask for, but you’ve done it! And you will keep doing it - because you’re his mom. And because you’re strong. You got this!

[moskids]

Hi, My kid has almost the exact same diagnosis and is 8 years old. He had reflux grade 5 but we are at level 2 and 3 thanks to a few surgeries. He also had a urostoma from 2 months old until 4 years old so he is left with bladder problems. We are at stage 3a at this point but I have never had any talk with a dietician since his birth. They never said he needs to alter his diet? I am wondering if my kids treatment isnt a bit too laid back? He actually doesnt really have a taste for salt(wieners, salami, etc) but he loves bananas - we limit to 1-2 per day. But that is about eat although German's dont have the packaged food and restaurant options the US has - I was shocked on our visit last week - first time in 5 years)

Anyway, it sounds like we are very much in the same boat. To introduce myself I am a mother of 3 (14,12,8) and I have lived in Germany since 2005. Thanks to the US health insurance situation we decided to stay here as everything for children is paid for by public health insurance. So no family support...I work very part time as the school system is tough to work around with 3 kids plus the additional medical crap. It sucks doing it all in a foreign language and the support groups are in german so I am now seeking out support in the US. I do lose my cool alot and I do take it out on others but I try to apologize . They get it and my son, of course, shows me his worst due to the stress and anxiety of being sick. We do laugh so hard when he gets sick with a normal cold. It's lovely to feel normal.

Please contact me for a chat if you want. Keep trudging and give yourself at least 100000 mistakes free

👍

[moskids in reply to moskids]

I have a question about your sons flareups. A few of the chat groups here have mentioned this but no one provides specific symptoms. What does a flare up look like?