Abby's Enzyme Test Results

ejwiegert

New member
Hey y'all!

Finally have news...

Abby has a little fat in her stool, but they don't see the amount as a problem. Was explained to me that everybody has some fat in their stool.

The Pancreatic Elastace (sp.) test that looks at the enzymes came back over 500 which means that she won't need enzymes and that it appears that her digestive system is working normally. YEA!!

We are still waiting on the results of the PKU test. I have a call in to the pediatrician to find out what's going on there.

Abby has her first appointment scheduled at the clinic in Atlanta on Sept. 12, so we should know even more then about what we can do for preventative care for her!

Thank you to everyone who has been thinking about us and sending good vibes our way. We appreciate it more than you know! I feel as if a weight has been lifted!

Em
 

coltsfan715

New member
That is GREAT news! I am so glad to hear that.

I hope that you get a great report from her first visit also.

Take Care and let us know how things continue to go.

Lindsey
 

chipper28

New member
Emily,

Thanks so much for sharing! I'm so glad to hear that she won't have to do enzymes. Abby's the first new baby on the forums since I found them, so I feel an odd interest in following her and hearing what's going on.

I know you were pretty confident as a parent who'd already had a child that Abby wouldn't need enzymes, but I know this must be a huge relief..

Keep letting us know how Abby, Lucy and the rest of your clan are doing.

Elizabeth
 

julie

New member
That's great news em. I'm so glad you got the results you did. GO ABBY!!!!!!!

Keep us pudated on that upcoming visit......
 

ejwiegert

New member
...and I got a call back from her pediatrician...

her PKU came back all within normal limits.

WOOHOO!

Yea!

Mama is doing the happy dance!
 

chipper28

New member
Whoohoo.. Abby defeating 8 different metabolic disorders with one small heel prick. Sounds like a super hero to me!
 
M

Mommafirst

Guest
That's such great news!!!  I was so thrilled when we recently
found out my daughter is also pancreatic sufficient, so no enzymes.
 I wondered, though, do you know if this is something that
will likely always be the case, or can pancreatic sufficiency quit
at any time?
 

ejwiegert

New member
I was under the impression from my prenatal visit at the CF clinic that "once pancreatic sufficient, always pancreatic sufficient," however, I don't know for sure. I'm sure someone on here does and I'll ask at Abby's first clinic appointment on Sept. 12.

Thanks for sharing and asking!!

Em
 

anonymous

New member
I know for me, its just been in the last little while that I have started having really bad GI issues. I suspect I was pancreatic insufficient all along but because I kept a decent weight(a little on the skinny/short side until massive doses of prednisone!) that everyone assumed I was pancreatic sufficient despite frequent stomachaches, upset stomach and awful gas. But then I had severe food allergies and was very picky eater so I pretty much lived off of vegetables and jello.....pretty low fat diet which is why my problems might have gotten worse in the last while.

I do people who had to take enzymes as a young kid but when they hit the teenage years tested as pancreatic sufficient and was able to stop.

Keep in mind that damage to the pancrease can be progressive and happen over a long period of time....just like the lungs. So yes pancreatic insuffiency can happen later in life. I think I've heard the teenage years is a big time for those changes to happen

Some doctors also have a theory that it doesn't hurt to give even pancreatic sufficient patients enzymes to help their pancreases not have to work so hard. And some who get pancreatitis(more common in Pancreatic Sufficient patients) find enzymes to be helpful in avoiding that.

But your daughter's mutation...R117H is known to be a mutation that involves pancreatic sufficiency(and normal sweat tests) so it might not ever be a factor for your daughter
 
M

Mommafirst

Guest
Your information is very helpful, mind if I ask another question?
 How do you know that her mutation is known to be PS?  My
daughter has w1282x and y1032c.  The first one has lots of
information on it, but I can't find much of anything on the second
-- should I be able to know if my daughters PS is consistent with
it?
 

ejwiegert

New member
We've just heard from a handful of folks who have or have contact with Abby's gene combination. The clinic folks also made mention that the combination usually is PS. Other than that and some of the research we have read online (which is rather dry reading) about the gene and the combination, we would have no real idea about what we should expect.

Wish I could be more help!

Em
 

debs2girls

New member
My daughter is panceatic sufficient at this time. Her doctor said she may not always be.
I wish I could find one of the doctors that give enzymes to those that are ps. Within 30 minutes of her eating, she is complaining of her stomach. Sometime she cries because it hurts so much.
When we were there yesterday, I told him again and this time he said to give her zantac....I reminded him that she takes prevacid already, so he told me to give her one tablespoon of mylanta every time she eats.
I think I would like to try the enzymes instead, but he doesnt think she needs them. He needs to be around when she eats then...lol....BTW, her stools are not greasy, but they are not normal either...sorry if that was tmi.
 
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