Hi,
My son has had 4 ops since oct. He had stones removed from his uretha via a laser in November. There were 2 1cm stones. Just had a scan today after weeing blood (bright red) two weeks ago. There are more stones in his kidney and uretha. They are new. Has anyone else had this? He was breastfed til 16mths. Normal diet, fluid intake normal. No sinister nasties in diet... So very worried.
oh my, that is unusual, and the hospital have no answer for it at all? Has he been tested for hyperthyroidism?
No not tested for that. Long story but this is how it goes...had recurrent sickness bugs with temperatures and we were told they were just gastro bugs. Then when potty training in July I noticed a creamy, white discharge in pants and cloudy urine. Once pee was dipped and sent away he was diagnosed with UTI and prescribed antibiotics. This went on and on until Sept 26th (his 3rd birthday). He urinated blood, bright red wee in a normal quantity, he was throwing up. I took him to A & E and was given IV fluids and antibiotics. He was scanned 3 days later (ultrasound) and found 2 1cm stones in left uretha and an enlarged left kidney holding onto pee that was backing up due to blockage. Sent to Sheffield Children's hospital as they couldn't treat him at North Staffs in ambulance. Was fitted with stent under emergency general. Went back in October for blasting via laser through his willy. Blasted stones and sent home. Rushed back in 2 days later as he wasn't able to wee. Catheter fitted. Waited 3 days for further laser surgery and they figured stones were still too big to pass. After scan was decided all fragments very tiny. Went home and with some pain he passed the rest of the tiny 1mm fragments. Has been well but 2 weeks ago another bug and pee of blood, scan today and here we are again. Consultant app in Sheffield on Monday. Didn't realise stones could form again so quick, kidney clearly swollen and retaining fluid, worried about long term damage. Driving me mad with worry and prospect of more surgery. 
Ask for him to be tested for it. I am pretty sure we have discussed this on here regarding the link. They did form very quickly!! It might not cure it, but will help to know why its happening even if they test and say no its not that! They really need to get to the bottom of this.
Have you looked at cystinuria? This could be something the doctors could be thinking about. It would be worth you having a look on the internet and discussing it with them. Hope you get it all sorted ouy soon x
Hi Planejin
Your little boy will have to be assessed individually and his treatment may depend on what kind of kidney stones he is producing. There are several different types including calcium stones or uric acid stones. The tube from the kidney to the bladder is obviously blocked or was not wide enough at birth, this could rectify as he grows. The Consultant will have to carefully monitor the situation and if they can get some fragment of kidney stone they will be able to determine what sort it is. Hopefully some dietary adjustments would then help. It is the way that his body is dealing with the calcium or uric acid etc and hopefully the doctors will be able to get to the bottom of it to give him the best treatment.
Best wishes,
NKF Helpline
Hi Everyone,
We saw his urologist on Monday. He has fragments of stone left in his ureter but crucially they're not new stones. His stone composition gave no clues, it was a mixture of various compounds that didn't indicate any metabolic condition and didn't help. His has a 'baggy' left ureter and his kidney is 'blown up'. His right kidney and ureter is normal. They're unsure whether it was the original stones that have caused the problems with his ureter or whether his tube and kidney have always been malformed since birth. They want to do tests on the function of his ureter after all stones have gone. He's booked for his 5th operation on 28th March to try and get the fragments out. He's peed blood last night and this morning but doc says not to worry, very very hard not to seeing that come from your 3 year old.
Oh one more thing; I emailed the Kids Kidney Research Charity, a very kind doctor from GOSH emailed back and suggested that he be under the care of a urologist and nephrologist. What do you think? Should I ask the question, don't want his surgeon to think I don't have confidence because he appears to be trying his best and it appears Sam isn't textbook! lol
If you have been given this advice I would certainly look into it. Doctors, surgeons ultimately want what's best for your son too.
I hope it all goes well for you.
Help with Kidney Problems 
My Dad has CKD
So worried about my son
Saying goodbye. And leaving some info that might make you people that have a "near" normal gfr feel better!
Extremely worried and confused, possible CKD.
