Reduced Kidney Function

[EllaF1410]

Hey,

Just looking to see if anyone has had anything similar as I've been going out my mind since Thursday.

Bit of a back story, my DD has been having water infections since September time. The 1st one was so bad bless her heart, and she was really poorly, I took her to the hospital and I can remember when they found out it was a UTI before discharging, they have a list of symptoms for me to look out for, as it would indicate more of a kidney infection and it would need IVs. I remember sat there like, she's like this now.... but took what they was saying as they are the professional. But it took weeks for the infection to clear after this.

Literally after this it's been never ending, the infections are back to back, as soon as the antibiotics finish we start with the symptoms again, it's been hellish. We've been in the hospital and children's ward numerous times, and we put under constant led care.

Fast forward to last Tuesday she had her DMSA scan, was told that the results would take 2 weeks. Anyway, by Thursday the consultant phoned me. She has significant reduced kidney function in her left kidney, and after all this time, they've seen that the infection is set deep within the lining of her kidney. 😳

So it's gone from its just one of those things she gets, to the Dr now speaking to the urology surgeon at the local children's hospital for advice.

We currently have more bloods booked in, a ultrasound, and she's on low dose daily antibiotics now. But has anyone had anything similar? What happens now, where do they go from here? Do I just sit and wait .... I'm going out of my mind! :(

Thank you in advance.

I’m so sorry ☹️☹️
my son had kidney infections as a baby and was on daily antibiotics to prevent infection for a year, until he had surgery on one kidney aged 1. I had similar list of symptoms as you to look out for and spent what felt like the whole of 1st year in and out of the ward with confirmed or suspected uti’s.
your appointment with the urology surgeon will give you lots of answers - what is the plan going forward, how much function is left, etc. not knowing and sitting worrying is the worst. The one good thing is is they’ve found the source of infection and can now make a plan.
with my DS he ended up having a surgery which was successful but until you know what your plan is and what it is I won’t bore you with those details until It looks like it could be helpful!
sending you a handhold and love xx

Thank you so much for your kind words. I'm very emotional 😭

They was speaking to the children's hospital team last week, and I've received a letter to see her consultant for the 11th May. She has a ultrasounds on the 4th May too.

I'm just left with so many unanswered questions. I feel like the whole conversation with the dr on Thursday is just a blur as I was shocked, and really wasn't expecting them to find anything else.

I think (might be wrong) her left kidney is down to 30% function. But he said there's no scarring.

He also mentioned about getting the infection under control, but she's only on the preventative daily antibiotics (trimethoprim once in the evening) so I'm unsure how they'll do that.

If you don't mind me asking, what was the surgery for for your son? And how is he doing now?

My little girl is only 3 and I'm just beside myself! I'm one of those people that needs to know every little detail so I can process what's happening xxx

Firstly, no scarring is great news 👍
And kidney function can improve again once the infection is under control 😊
my son was on trimethoprim for a year and when he got a UTI the wound culture it to find exactly what antibiotic it needed. I imagine they will be prioritising that with your DD.

my son is now 10 and as healthy as an ox and never gets ill. He was a punt baby and I drove myself pretty crazy watching over him for uti’s and spending so much time going back and forth to hospital. But it passes 💞and he’s now so well I don’t worry about his Kidneys anymore and that is something I never thought I could say when I was at your stage.

He had a rare PUJ obstruction at the bottom of his left kidney causing hydrophrenosis. He had a pyleoplasty surgery aged 1 to place a stent which was later removed and we never looked back.
they will want to figure out what’s caused the infection, treat it and then make a plan going forward. I’m so sorry it’s taken until now for them to recognise this ☹️But at least you’re in the right place now and the best team to manage it. anything I can to do help or support just let me know as I had to become a sort of DIY child kidney expert overnight xx

• they would culture it, not wound!

Oh my phone 🤦‍♀️Puny baby, not punt!

to make you smile - if he wants a day off school now he’ll come to me and say “mum my kidneys are sore, remember I had that kidney problem? And I’ll say “oh honey, can you point to where it hurts?” And he’ll point to his chest or shoulder and I’ll say “erm that’s not your kidney, nice try, go and put your uniform on” and he’ll stomp off annoyed he’s been rumbled😂
this will be your DD in 7 years too 💞

Thank you so much for all your support. It really is appreciated.

I requested a copy of the letter the consultant sent to the children's hospital today, and it says full renal pelvis too, would you happen to have any idea what this means?

Hopefully getting answers today from the children's hospital about what route they are going down which will be a relief, but I've had to push and push... the consultant even put the wrong year old the blood form 🙈

It's lovely to hear your son is doing well, it's really reassuring.... and indeed it did make me laugh 🤣

Thank you once again for the support it's nice to speak to someone going through similar xx

Anytime 💞glad I can help.
full renal pelvis is just them checking all the renal system from kidneys to urethra - basically a full check of the whole plumbing system. Helps them build bigger picture of how an why the infection got so high and went unnoticed. They won’t want to have missed anything else and will be cautious now having allowed it to go on for so long 😡
I HATED having to do so much pushing and wrong info on forms always upset me. I really understand. You’re doing a great job mama bear xx