Re: pancreatic SUFFICIENT???

[Guest guest]

Hi Sara,

Our docs did the test on Ellie at our request. I just wanted to know

even though we suspected she was pancreatic insufficient. I just felt

better knowing for sure. I think it is fairly common to put kids on

enzymes then figure out if they are needed or not...since most of the

time they are. Keep us posted on his results.

pancreatic SUFFICIENT???

Hi everyone,

We had a weird day. We saw a GI specialist for Zach for the first

time. I wanted to try Previcid for Zach and his CF doc wanted to do

an overnight PH probe before agreeing to the switch. I asked if we

could see a GI person locally because I thought an overnight test

seemed extreme. This local GI doc tells us that he thinks Zach is

pancreatic sufficient and does not need enzymes at all. He is doing

an elastase stool test to prove it. If the pancreas is working

correctly his stool will have elastase in it. Since we are not

giving him elastase in pill form, the test should be conclusive.

Now what?? Take him off enzymes?? I am so confused. I have always

thought that Zach started to feel better because he was having much

fewer bowel movements, less gas, etc. Now I do not know what to

think. The GI doc thinks Zach's problems may be nutritional.

Has anyone every had an elastase test done? Is this common?

Sara

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

[Guest guest]

No, we never did that test but my GI doc wanted to try the no enzyme

thing too. My son is on a hypoallergenic pre-digested formula

(Peptamen Jr--he doesn't eat anything at all, all g-tube fed) and the

GI doc didn't think enzymes were necessary. Well, to make a long

story short, my son needs enzymes. lots of poopy, yellow, oily,

smelly diapers. ugh. So confer with your CF doctor and the CF doctor

dietician before making the change.

On the other hand, wouldn't it be nice to give a kid LESS medicine??!

mom to Ashton 30 months wcf

> Hi everyone,

> We had a weird day. We saw a GI specialist for Zach for the first

> time. I wanted to try Previcid for Zach and his CF doc wanted to

do

> an overnight PH probe before agreeing to the switch. I asked if we

> could see a GI person locally because I thought an overnight test

> seemed extreme. This local GI doc tells us that he thinks Zach is

> pancreatic sufficient and does not need enzymes at all. He is

doing

> an elastase stool test to prove it. If the pancreas is working

> correctly his stool will have elastase in it. Since we are not

> giving him elastase in pill form, the test should be conclusive.

> Now what?? Take him off enzymes?? I am so confused. I have

always

> thought that Zach started to feel better because he was having much

> fewer bowel movements, less gas, etc. Now I do not know what to

> think. The GI doc thinks Zach's problems may be nutritional.

> Has anyone every had an elastase test done? Is this common?

> Sara

[Guest guest]

Well, tough old Mom that I am and tough old person wcf,

if they work, I would ask that they be prescribed and used!

n Rojas

pancreatic SUFFICIENT???

> Hi everyone,

> We had a weird day. We saw a GI specialist for Zach for the first

> time. I wanted to try Previcid for Zach and his CF doc wanted to do

> an overnight PH probe before agreeing to the switch. I asked if we

> could see a GI person locally because I thought an overnight test

> seemed extreme. This local GI doc tells us that he thinks Zach is

> pancreatic sufficient and does not need enzymes at all. He is doing

> an elastase stool test to prove it. If the pancreas is working

> correctly his stool will have elastase in it. Since we are not

> giving him elastase in pill form, the test should be conclusive.

> Now what?? Take him off enzymes?? I am so confused. I have always

> thought that Zach started to feel better because he was having much

> fewer bowel movements, less gas, etc. Now I do not know what to

> think. The GI doc thinks Zach's problems may be nutritional.

> Has anyone every had an elastase test done? Is this common?

> Sara

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

> Has anyone every had an elastase test done? Is this common?

Yes my son had one done while he was being worked up for CF at the

CF clinic. Only one place does them (so I was told ) and the wait

could be several weeks. It's painless - all you have to do is collect

a sample and wait. The elastase test showed my son was sufficient as

well. He does complain of belly pain (or did before his diagnosis)

but the workup discovered he was completely filled with stool. He now

is on a stool softener every day and it seems to make a big

difference in his belly pain.

jan

[Guest guest]

Was your son having any malabsorption problems before diagnosis? We

pursued cf dna testing because we thought Zach had fat malabsorption

from pancreatic insufficiency. After his dna test came back with

two known cf mutations, no one ever mentioned doing an elastase test

to verify that he needed enzymes. Our GI doc is convinced that Zach

has malabsorption problems that are NOT cause by pancreatic

insufficiency. He thinks it could be food allergies, etc. I am

confused. I hope that the test shows that Zach's pancreas is

working. If he is pancreatic sufficient, then why in the H-E double

hockey sticks didn't the cf clinic test for this back in March. It

is a possiblity that I have been giving Zach enzymes needlessly.

If Zach is pancreatic insufficient, then this GI doc has wasted my

time and I will get over it, but if the CF clinic screwed up, I will

have a hard time trusting them again.

Sara - mommy to Zach 20 months wcf

>

> > Has anyone every had an elastase test done? Is this common?

>

>

> Yes my son had one done while he was being worked up for CF at

the

> CF clinic. Only one place does them (so I was told ) and the wait

> could be several weeks. It's painless - all you have to do is

collect

> a sample and wait. The elastase test showed my son was sufficient

as

> well. He does complain of belly pain (or did before his diagnosis)

> but the workup discovered he was completely filled with stool. He

now

> is on a stool softener every day and it seems to make a big

> difference in his belly pain.

>

> jan

[Guest guest]

> Was your son having any malabsorption problems before diagnosis?

Possibly but I didn't know what it was at the time because he

presented as " healthy " to the doctors. He was always was above

average in height and weight but frequently complained of belly pain.

While I noticed he would occasionally have pale stools that would

float, it wasn't a constant event. He also would produce some stool

almost every day which was relatively soft so I never thought

constipation was an issue.

My son is adopted and although I have medical information on his

maternal side, we had nothing from the paternal side so CF was not on

the radar screen. It really shook up hi birth mother and family when

I let her know of his diagnosis and his half brothers are now beeing

tested.

As long as my son is keeping up with his growth curve I would

prefer not to have him take enzymes. It seems a long as he doesn't

have a lot of high fat/sweetened foods he is OK. He needs to graze

not eat three meals a day.

jan