Just wanted to start a space for parents. How did you cope at the start, and how are things now? What’s helped you along the way, or been harder than you expected? You’re not alone. Share your journey here and connect with others.
Hello,
I’m a mum to a thoroughly content 5 year old with Ckd stage 3 currently oscillating between stage a and b.
The diagnosis when he was 2 was terrifying at first but we’ve got a good routine with medication and getting his fluid intake to about 3 litres a day. He was diagnosed inutero but then we were discharged after birth incorrectly, it was when I stopped breastfeeding that I noticed how much liquid he drank every day and took him to great Ormond Street.
I have found that having a kind pharmacist and a Dr’s receptionnist who can apply some logic to issues that cone up has helped. We’ve had lots of issues with medications being made for adults with little to no consideration as to how you can get them into small people. I make date balls with medicine in and can get some in flavoured syrup.
School can be hard work trying to avoid stomach bugs, but again it’s getting easier with time. Other parents liken his disease to their kids needing to take calpol occasionally or getting a grazed knee, some deep breathing is required and I’m learning to let those moments go past me when I don’t need someone to understand.
His future worries me but he is having a jolly lovely life and I’ll just try my best.
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Im a parent also of a son with kidney disease. He was diagnosed at 21. It’s very worrying. Your being a great parent from all u say. Take each day at a time and try not to over stress. I understand the other parent bit. Some people don’t understand kidney disease unless it touches them. Hear to chat. X
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@ClaireAmias & @Kathy76, thank you so much for sharing your kidney connection 
.
It’s clear to me that you’re both doing amazing jobs navigating life with a child living with kidney disease. What you’re doing isn’t easy and yet you continue to show up with such care!
Brogan
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Something I struggle with most days, is feeling like a bad mom because I’m sick and can’t be the mom I want to be.
I’m recently diagnosed and struggling, and I can’t help but think things are only going to get worse as things progress.
Anyone a parent, feeling similar or felt similar?
How do you cope with feeling guilty or being a parent who is unwell.
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