Hello - My 5 Year Old Son Diagnosed in May

[bcarppa]

Hello everyone. My five year old son went into the hospital in March with an infection, they thought first it was a UTI, but after going back a 2nd time they did an ultrasound and found a 5cm staghorn in his left kidney. We had it out in early May after two surgeries. He was diagnosed with Cystinuria in mid May, and by the end of the month we got him on Penicillamine. I guess it was not quick enough as we just got a stent put in Thursday so they can take two more stones out in a couple of weeks. The doctors are telling us that once we get the right dosage and if we give him the medication every day he should not get any more stones. I would love to hear what people's experience has been with this medication, and if this medication will keep him stone free. Are there concerns we should have with this medication, we have read about the side effects, but it seems to be our best option.

Thanks.

[magdakon]

Hi there, I'm a mom of a 3 and a half years old girl who has cystinuria. She also had a 3 cm stone when she was 18 months and made a surgery to take out.She takes captopril, potassium citrate and 2,5-3 lit water per day.I feel for you, it's very difficult disease.I wish you find the right treatment for your child and hope everything will be ok now on!

[stella120]

Hi there,
My son was diganosed before he turned 2 years of age. He has a stent in at the moment, and he also has a nasal gastric tube in. This is so we can get alot of fluids through. He is also on a low sodium diet and takes 4 different types of medication. He is on Pyroxin, Potassium Citrate, Penicillimene and Chehlex. Even doing and taking all of this, he is still getting more and more stones. I feel i dont know what else to do. We are on and off to the hospital every 2 weeks for ultrasounds, blood tests, urine tests etc... Take care and thinking of you.