Advice please

[izzy26]

My little girl is 28 months old and until four months ago we thought she was ok. She had terrible diarrhoea for four months and doctors thought she was small and pale. Stool samples show she has exocrine pancreatic insufficiency of -15 for July and August was -18. She's been tested for cystic fibrosis and celiac to which she's negative for both. They want to do more blood and stool samples. She is just under 30 lbs and is very short for her age. She doesn't register on the charts. Does anyone know if it take weeks months to be so severe pancreatic insufficiency. She has history of constipation or diarrhoea and stunted growth. Any advise please xx

 

[crohnsinct]

I am sorry your little one is having such trouble. I don't know anything about pancreatic insufficiency. Hopefully others will be along shortly. Also hoping the testing gives you some answers and guidance.

 

[DustyKat]

I am so very sorry to hear that your little lass is going through this and that you have having to go through this with her. :ghug:

I think it would be difficult to predict how long it takes for the pancreatic to reach this point without establishing what the underlying cause is. With that said though you may be able to link it to her symptoms…

Did the drop off in weight and growth happen 4 months ago at which point you thought everything was okay?
Or was there previous issues with growth and weight prior to her developing diarrhoea?

What I am alluding to is, if everything has occurred in the last 4 months then I would think something acute has occurred and the drop of in pancreatic enzymes has only occurred in that time. On the other hand, if you had suspicions that something wasn’t right but there was no overt answer as to what then perhaps the decline has been chronic until it reached a point that the levels were unsustainable to good health. Hence the tip over into symptoms of more severe malabsorption.

As they have ruled out the two most common causes have they mentioned what they will be looking to next, maybe Crohn’s?

Dusty. xxx

 

[izzy26]

What brought her condition to our attention was having runny stools for 4 months with blood in her stools. Subsequently the health visitor found she was under for height and weight on the charts....under 4th centile Basically she doesn't appear on the charts. We didn't think anything was wrong as I'm small and petite so we guessed she was taking after me.

 

[izzy26]

Thanks dusty, your opinion and advise is very helpful! They are looking at crowns which is why I am wondering if pancreatic insufficient is part of crowns? Xx auto spell check pain in the backside lol

 

[Farmwife]

Hi and welcome.
I'm sorry I'm ringing in late here but happy you found us.
My dd Grace was dx at 3. Sadly a lot of young ones take longer to dx because their disease(s) don't always follow the rules of what doctors think they should see.

I hope you get answers soon and please ask as many questions as you like.

I'm going to tag in
Pilgrim - as she has a young one.
DanceMom -has a daughter that doesn't fit in a neat box either.
mlp -because the forum wouldn't be the same without her ( she also has a son with this disease).

 

[DanceMom]

I have no experience with pancreatic insufficiency. Sorry! Hopefully your GI will be able to give you some answers, but if not perhaps a Rheumatologist or Immunologist could be of help.

My daughter has been labeled FTT (particularly as an infant), has had chronic diarrhea, and bloody stools. We are now exploring possible primary immune deficiencies. When your child doesn't fit in a neat little box answers seem to take a long time. My girl is 10 so we've been at this game for a decade......

 

[Pilgrim]

I came to this post very, very late. But I wanted to offer hugs as another mom of a little one.

Have you had any answers since first posting?