WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Thursday, March 22, 2012

Score: Horses ZERO Zebras ONE!

Well- our wonderful GI and his PA had to break it to us that they found ZERO horses. Back to that 1 big zebra.

Best guess it is autonomic related. We still have the HIDA scan and the possibility it is some sort of chronic pancreatitis(Abby's guess)but no easy way to treat or define.

Positives- we ruled out a lot of horses all at one time- which is a huge relief.
Negatives- our particular pet Zebra is not one that can be cured or even treated well. :-)

So now what? Well, Abby gets to live with yet another fun(NOT)side effect of this "depletion" junk.

The good thing is that she has learned to deal with a new level of pain, she has learned the pain won't kill her and I think she just accepts that food is painful for now..possibly for a long time. I am terribly proud of her. She knows it is in her best interest to keep eating and moving and on the worst of her days she gives it her all.

The other good thing, we really are anti feeding tube at this age. If Abby were 2 and we could not explain that the pain is just something she has deal with, then I think I would be lining her up for a tube. But, she is plenty old enough, and plenty tough enough to deal with it. People have all sorts of health issues where they just have to suck it up sometimes- this is one of them. Is it fair that food is now a painful necessity instead of a joy,pleasure, social interaction? Nope. But, no guarantee's a feeding tube would get rid of the pain, or discomfort or mal absorption and certainly a tube is a negative on the social front(though it should not be) so she might as well enjoy tasting it :-) It could get worse, and if it gets to the point that she becomes so thin or she says she has had enough- we will work from there. Abby is from tough stock- I bet she will overcome this little hiccup with good grace like she has done with every other obstacle.

Back to learning about our food, focusing on making each bite as nutritious as possible. Time for some dust/allergen elimination around here... It seems with Abby it is always the "straw that broke the camel's back". She has been having more problems with the Elecare lately, so thinking the whole liquid supplement maybe be causing more harm then good-we will trial a week without. If we can eliminate even a few of those "straws" maybe she can find some balance amongst the Zebra's.


Jenna said...

Matt isn't much for food either, I don't know if it hurts but I do know he has motility issues that causes him to vomit if he has a normal amount of food. Sometimes he even vomits with out the food. He mainly lives of pediasure. I know that you are anti feeding tube at this point, but is she on a formula to help her when she just doesn't want to eat and deal with the pain.

Jenna said...

Right now Matt is on a specialized formula it seems to be helping a lot. It is even helping with his severe constipation.

Diane said...

Yes, Abby supplements with Elecare... she has that constipation issues too- never had a major issue until last year..

The Dr. is figuring since most foods are hurting right now she should try expanding what she is eating and see if we can get her balanced.

It was all so much harder when Abby was little like yours, She is almost grown at 17, so much more able to handle the complications. Little ones aren't ready to understand yet .. :-( Hugs to you and Matt!

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