My son is now 6 years old and had his kidney transplant at 2 years after both of his kidneys failed due to nephrotic syndrome ( though the real diagnosis ) is not confirmative.
Anyways after the crazy ride, today I need guidance or personal experience to help us get to the next step. Please excuse my long write up,I just want to cover the main details.
1) he is always been on progarf - 3mg twice and predinosone- 2 ml ( 3 days a week)
In his recent biopsy kidney showed chronic damage as per docs even though he received his kidney from me( mom) with most matching.
2) so they added imuran - 50 mg once to the mix saying he is not well Immune suppressed aba that may be the reason for chronic changes in his kidney.
3) we had tried imuran during time of transplant and he developed pancreatitis and so the nephro team agreed to have mono therapy with steroid.
Now within 60days of imuran we are hospitalizdd twice with severe vomitting,bloody dairhea and stomach ache.
I am planning to ask the docs if this is again a imuran side effect but please share if anyone had any experience like this coz the docs think lot of kids do great on imuran and my son is responding so different for this med.
So many questions ss, many doubts and everyday decision making to make sure his kidney is protected but his meds are also not so high and his growth and daily life is fin e.
I have searched enough but unable to get to a comfortable pplace with immune suppress ants and it's a daily worry on it's side effects.