Chronic Pediatric pancreatitis in 6 year old

[cjw]

We have a six year old boy who has had pancreatitis for over five weeks now.  His Lipase has been sitting at 3500 for the last 10 days(we have had numbers over 6500) and his amylase has been around 650 (we have has numbers over 1000).  He has had an ultrasound, MRCP and a CAT scan and so far we have only come up with sludging in the gallbladder.  We have been draining his stomach thru a N/G tube for 3 weeks, he has been NPO for the last 6 weeks.  He is TPN dependent, has reflux, delayed gastric emptying, psydo obstruction and has ependymoma brain cancer which is in remission. He currently is on Zantac, TPN, hydrocortizone, Zophran, prilosec, Diludid PCA pump(for pain),
Vancomycin for a bacteria blood infection, levsin and flugonizal(?) for thrush.  Is there anything else we should be doing besides draining his stomach and pain control? We don't see an end in site.  He has had pancreatitis in the past. Any suggestions would be appreciated. Thanks!

[leila]

I'm afraid this is no expert answer.  It would be nice if you got one.  I just wanted to say how sorry I am your boy is so sick.  I really feel sad for him and yourselves coping with all this. I have a 7 year old boy myself and I hate to imagine what you are all going through.  I wanted to send all the good wishes I could to you all.
Julie

[leila]

I'm afraid this is not the expert response you obviously need.  I just wanted to say how sorry I am that your boy is so sick, and that you are all going through this sadness.  I have a 7 year old boy myself and can't imagine what you are all having to cope with. I really hope that things get better for you.  Sending you as many good wishes as I can manage,
Julie