Prograf levels

[krfm2003]

Incase you missed my son's intro here's a small snippet. My son was born two months early with bladder blockage (incomplete urethra) that caused urine to reflux up to his kidneys in utero - destroying them. He received the gift of life at the age of 18 months, nearly two months ago in January. Last week, Matthew got a tummy bug...actually we ALL got a tummy bug (the house just smelled wonderful let me tell you! ) Well with dehydration and a two pound weight loss - his prograf levels are really high. Last lab on Monday showed they were at 21.2 (they want them around 8 -10) at the moment (he is about 7 weeks out). Last night he was having troubles sleeping - just up and fussing all night long. My gut is telling me it is the prograf. We have clinic and labs tomorrow. I thought about taking him in today, but then thought that they couldn't do anything that I wasn't already doing. Just cut the doses with doctor's orders and see about labs. His creatinine was also up a smidge. That worries me...the toxicity on the kidney. How long can recipients be "toxic" without substantial damage occurring? Anyone have experience with several days of toxic levels and their creatinine returned to their normal levels after the fact?
Thanks for any input!
Karen

[Romona]

I would call and see what they can do. When I had higher levels, I felt terrible. His creatinine hopefully will drop when his prograf level comes down. Long term use of Prograf can cause damage to the kidney and tubuals. Prograf damaged my tubuals, I lose too much phosphorous. I take supplements.

[Wenchie58]

They used to run my prograf levels high...around 20 as I was having issues with rejection.  My creatinine was also always high along with the prograf.  They settled me in around 16 which still left my creat a bit high.  Now they keep me below 8 and things keep chugging along.  I was also very restless when tac levels were high....because it made me feel all jittery.
Best of luck to your lil guy!

[Chris]

Since I am not familiar with children and transplants, not sure if what I'm thinking is the same protocol. I would be on IV fluids to help the kidney when I am that sick to help creatinine. When my Prograf is high and that high, I am very fidgity, tremble like crazy. Not to sure about insomnia, that is constant when I am well.
 
Hope your son gets well soon along with both of you. I just hate the thought and smell of 

[jennyc]

Hey, i do hope it calms down, the poor mite must be feeling to off. My Tac range is between 8-10 but it often goes as high as 16 becuase of the celcept. (apparently having the runs causes your tac levels to go way up for some reason). When my tac is too high i get cold sweats and really shakey and cold burning in the fingers/toes. Chris is right with the IV fluids though, being so young they'd probably put him on IV even if he wasn't transplant patient, when my son had it (at about 18months) his temp spiked and he had fits from it. There is a product called hydralite (not sure of hte US name) but it's designed for kids with gastro bugs and help rehydrate them. Check with the clinic if your son can have them.

Good luck with it, i hope it works out soon.