advice help please mum of a cystinuria son

[chell70]

can anyone advice me ways to help my son please read my story thank you x

[Rosepyc]

Hi,What support or advise would you like? My main suggestion is for your sonbto be referred to Nephrology so he can be screened properly and have medication prescribed, if needed.

My son is 7yrs old and he was diagnosed at 15months after being severely ill from 7months old with UTIs. He had keyhole surgery to save his left kidney and few courses of "stone blasting" all in 2015 before he was 2yrs old. A stone in the right kidney remained and grew gradually until 2019 when it looked like it had reduced in size then couldn't be seen on scans last year. Since diagnosis we have managed it with potassium citrate and from 2018 also with penicillamine though this has recently been reduced and pending results to see if reduced dosage is ok.

Happy to help if I can, but do get referred to nephrology.

Rose x

[chell70 in reply to Rosepyc]

what best diet as was only told 2 days ago on phone about diet changes

[Rosepyc in reply to chell70]

Hi,

As our son was and is so young we were told not to adjust his diet as he needs to develop and grow. But for adults the idea is to manage protein intake, so meats and diaries, to reduce the amount of cysteine going into the body and not being processed/absorbed. A low protein diet is a good place to start and particularly reduction in red meats helps reduce the risk of stone formation. Some adults go vegetarian, some vegan as diary can have an impact. They can be stone free and not need medication It's personal choice I guess, but if needed potassium citrate creates alkaline conditions in the body that helps cysteine dissolve and in cases where cysteine levels risk stone formation penicillamin (not an antibiotic) stops cysteine particals joining to form stones.

Hope that helps.

[Rosepyc in reply to chell70]

Forgot to say HIGH water intake and low salt intake. My son has about 2L at his age. Many adults drink 5-6+ litres. Keeping the kidneys and bladder flushed gives cysteine less chance to form stones.

Try this link too about diet.cystinuriauk.co.uk/diet-tel...

[Pheonixrising123]

Hi, I have found that keeping the body as alkaline as possible really helps. I make a drink of honey, cinnemon and lemon juice (with lemon flesh) and drink that 3 times a day... Also, drinking plenty of filtered water throughout the day (I drink 4litres) by sipping, keeps the body well hydrated and lessens stone formation.