One dr says PI, one dr says not PI

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Julie7

New member
I'm confused. Many of you have read my posts and provided great support. In March, dr #1 diagnosed my son with PI based on pancreatic stimulation (secretin) test during endoscopy. Four out of five digestive enzymes were below normal. Dr#1 said this represented "mild-moderate PI." He prescribed enzymes and my son gained 4 pounds since March and his diarrhea got better. Fast forward to today, my son was just discharged from nearly 3 weeks in hospital, from acute pancreatitis and ileus. Dr #2 (2nd opinion dr) says ignore pancreatic stimulation test since his fecal elastase has been >500. Still pending fecal elastase from last week. Dr#2 stopped enzymes and now it's wait and see. Back to March weight due to hospitalization :(
 
J

just1more

New member
If the enzymes worked (weight gain, improved bowels) then there is no reason to stop using enzymes in my opinion.

While what Dr 2 says, makes clinical sense (regarding elastase results) if enzymes improve symptoms, then you use enzymes. Lab tests are not 100%.

I'd go back to Dr 1, and if needed go talk with your CF center and if they intend to drop the enzymes, insist they address the weight loss and bowel issues.
 
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Julie7

New member
IVS8 5T-TG12-M470V/5T-TG12-M470V
Problem is my son is in diagnostic limbo, with above results so far. Full Ambry pending...so our CF center does not consider him CF...
 
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JENNYC

New member
Hi Julie, when in doubt I always say mom knows best! How did your child do in your opinion when on enzymes? Sounds like he felt better and he gained weight. Sounds like he needs enzymes to me. I would fight for what I felt works for my child. And of course I'm not saying ignore your dr's but in my opinion sometimes you have to push and almost force to get what you know is right for your child. Dr's are people too. Not saying they are making a mistake, but they definitely can, and one of them must be right? I would fight for what you feel is working best for your son. The goal is to make him better no matter what. Good luck!! It can be so hard questioning drs!! Been there got a couple of T-shirts LOL!! Keep us posted :)
 
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Julie7

New member
3 fecal elastase results from last week: 357, 400 and 500. Previous tests since March were always >500. Dr said all 3 results are considered normal. As my better half says, wait for genetics. Thank goodness my husband has more patience than me.
 
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