Pancreatic sufficient -- or not??? Help! Confused!

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>janddburke</b></i>

after 5 years of 1 Pancrease MT4 before each meal or snack I started to 'forget' a few times. nothing happened. so we suggested to the dr. that she might just not need them. he agreed to let us try over a long weekend (just in case we needed to add them back in). We've never looked back.

</end quote></div>

This is how I ended up not taking them from my teens through my twenties. It wasnt until I had a new CF doctor in the clinic ??? it & did a fecal fat test which showed that although I was maintaining my weight....I was still losing quite a bit of fat which would help me so I went back on enzymes.

As far as not using them.....I had floating stools (hence the fecal test), but not the chronic diahrea & cramps that I had which led to my diagnosis.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>janddburke</b></i>

after 5 years of 1 Pancrease MT4 before each meal or snack I started to 'forget' a few times. nothing happened. so we suggested to the dr. that she might just not need them. he agreed to let us try over a long weekend (just in case we needed to add them back in). We've never looked back.

</end quote></div>

This is how I ended up not taking them from my teens through my twenties. It wasnt until I had a new CF doctor in the clinic ??? it & did a fecal fat test which showed that although I was maintaining my weight....I was still losing quite a bit of fat which would help me so I went back on enzymes.

As far as not using them.....I had floating stools (hence the fecal test), but not the chronic diahrea & cramps that I had which led to my diagnosis.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>janddburke</b></i>

after 5 years of 1 Pancrease MT4 before each meal or snack I started to 'forget' a few times. nothing happened. so we suggested to the dr. that she might just not need them. he agreed to let us try over a long weekend (just in case we needed to add them back in). We've never looked back.

</end quote></div>

This is how I ended up not taking them from my teens through my twenties. It wasnt until I had a new CF doctor in the clinic ??? it & did a fecal fat test which showed that although I was maintaining my weight....I was still losing quite a bit of fat which would help me so I went back on enzymes.

As far as not using them.....I had floating stools (hence the fecal test), but not the chronic diahrea & cramps that I had which led to my diagnosis.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>janddburke</b></i>

after 5 years of 1 Pancrease MT4 before each meal or snack I started to 'forget' a few times. nothing happened. so we suggested to the dr. that she might just not need them. he agreed to let us try over a long weekend (just in case we needed to add them back in). We've never looked back.

</end quote>

This is how I ended up not taking them from my teens through my twenties. It wasnt until I had a new CF doctor in the clinic ??? it & did a fecal fat test which showed that although I was maintaining my weight....I was still losing quite a bit of fat which would help me so I went back on enzymes.

As far as not using them.....I had floating stools (hence the fecal test), but not the chronic diahrea & cramps that I had which led to my diagnosis.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>janddburke</b></i>
<br />
<br />after 5 years of 1 Pancrease MT4 before each meal or snack I started to 'forget' a few times. nothing happened. so we suggested to the dr. that she might just not need them. he agreed to let us try over a long weekend (just in case we needed to add them back in). We've never looked back.
<br />
<br /> </end quote>
<br />
<br />This is how I ended up not taking them from my teens through my twenties. It wasnt until I had a new CF doctor in the clinic ??? it & did a fecal fat test which showed that although I was maintaining my weight....I was still losing quite a bit of fat which would help me so I went back on enzymes.
<br />
<br />As far as not using them.....I had floating stools (hence the fecal test), but not the chronic diahrea & cramps that I had which led to my diagnosis.
<br />
<br />

 

[SarahProcter]

So, after all this, I'd emotionally and mentally prepared myself as much as I could for starting enzymes today with my daughter -- and at the clinic visit they told me that her pancreatic enzymes measured COMPLETELY NORMAL at >500, and that she in no way needs enzymes and this says she's unequivically pancreatic sufficient. Her low weight they now think may be just because she's a stringbean by her nature, or possibly something to do with feeding or whatnot. I asked for a referral to a lactation consultant so we can work to make sure she's getting enough calories. But HOORAY for NORMAL ENZYMES YAY!!!!!!!!

 

[SarahProcter]

So, after all this, I'd emotionally and mentally prepared myself as much as I could for starting enzymes today with my daughter -- and at the clinic visit they told me that her pancreatic enzymes measured COMPLETELY NORMAL at >500, and that she in no way needs enzymes and this says she's unequivically pancreatic sufficient. Her low weight they now think may be just because she's a stringbean by her nature, or possibly something to do with feeding or whatnot. I asked for a referral to a lactation consultant so we can work to make sure she's getting enough calories. But HOORAY for NORMAL ENZYMES YAY!!!!!!!!

 

[SarahProcter]

So, after all this, I'd emotionally and mentally prepared myself as much as I could for starting enzymes today with my daughter -- and at the clinic visit they told me that her pancreatic enzymes measured COMPLETELY NORMAL at >500, and that she in no way needs enzymes and this says she's unequivically pancreatic sufficient. Her low weight they now think may be just because she's a stringbean by her nature, or possibly something to do with feeding or whatnot. I asked for a referral to a lactation consultant so we can work to make sure she's getting enough calories. But HOORAY for NORMAL ENZYMES YAY!!!!!!!!

 

[SarahProcter]

So, after all this, I'd emotionally and mentally prepared myself as much as I could for starting enzymes today with my daughter -- and at the clinic visit they told me that her pancreatic enzymes measured COMPLETELY NORMAL at >500, and that she in no way needs enzymes and this says she's unequivically pancreatic sufficient. Her low weight they now think may be just because she's a stringbean by her nature, or possibly something to do with feeding or whatnot. I asked for a referral to a lactation consultant so we can work to make sure she's getting enough calories. But HOORAY for NORMAL ENZYMES YAY!!!!!!!!

 

[SarahProcter]

So, after all this, I'd emotionally and mentally prepared myself as much as I could for starting enzymes today with my daughter -- and at the clinic visit they told me that her pancreatic enzymes measured COMPLETELY NORMAL at >500, and that she in no way needs enzymes and this says she's unequivically pancreatic sufficient. Her low weight they now think may be just because she's a stringbean by her nature, or possibly something to do with feeding or whatnot. I asked for a referral to a lactation consultant so we can work to make sure she's getting enough calories. But HOORAY for NORMAL ENZYMES YAY!!!!!!!!

 

[grassisgreener]

That is great news! It is hard when our kids don't fit the mold bc we worry about it being from CF when it is often just genetics. It is always good to investigate thoroughly though.

 

[grassisgreener]

That is great news! It is hard when our kids don't fit the mold bc we worry about it being from CF when it is often just genetics. It is always good to investigate thoroughly though.

 

[grassisgreener]

That is great news! It is hard when our kids don't fit the mold bc we worry about it being from CF when it is often just genetics. It is always good to investigate thoroughly though.

 

[grassisgreener]

That is great news! It is hard when our kids don't fit the mold bc we worry about it being from CF when it is often just genetics. It is always good to investigate thoroughly though.

 

[grassisgreener]

That is great news! It is hard when our kids don't fit the mold bc we worry about it being from CF when it is often just genetics. It is always good to investigate thoroughly though.

 

[Kerry Morneau]

Hi I have 3 sons with the same mutations. They were diagnosed in 20008 and 2009. At the time they were 11,13 and 16. All are pancreatic sufficient. Mild lung issues for all but one who also suffers from asthma. No issues with height two are 6 foot and on is 5'10". Nothing appeared wrong until our then 13 year olds(Zack)asthma appeared to worsen and xrays indicated possible CF. Was very surprised that he came back possitive. Over the next year our other 4 children where tested and our other two boys were confirmed. All are athletic do fairly well with no issues except for Zack. He has had some issues with weight gain and is now doing nocturnal gtube feeding. He remains pancreatic sufficient. If there is anything else I could help you with please let me know.

 

[SarahProcter]

Hi I have 3 sons with the same mutations. They were diagnosed in 20008 and 2009. At the time they were 11,13 and 16. All are pancreatic sufficient. Mild lung issues for all but one who also suffers from asthma. No issues with height two are 6 foot and on is 5'10". Nothing appeared wrong until our then 13 year olds(Zack)asthma appeared to worsen and xrays indicated possible CF. Was very surprised that he came back possitive. Over the next year our other 4 children where tested and our other two boys were confirmed. All are athletic do fairly well with no issues except for Zack. He has had some issues with weight gain and is now doing nocturnal gtube feeding. He remains pancreatic sufficient. If there is anything else I could help you with please let me know.

Wait wait wait, you have three sons with DF508 and S1159P????? I have been searching for years with no luck to find anyone with S1159P! Can you confirm that I have not misunderstood your post?

My daughter is six now, still pancreatic sufficient, and tall for her age. No hospitalizations or major lung infections yet, though some troublesome things showing up on a lung CT scan just this week.

If your kids have S1159P I am over the moon to know of it, I've never found anyone else. I'm very glad to hear that they're healthy kids! What treatments do they do? We're contemplating adding pulmozyme due to the CT results (currently only doing HTS and vest). Trying to get into a study of kalydeco in kids with residual function mutations (pancreatic sufficiency and comparatively low sweat tests) but no luck so far.

Thank you for your response!

 

[Kerry Morneau]

Yes all three have s1159p with f508. We were at the adult clinic this week and they found our mutations on the cf data base after looking for more information on line I found your post. We do take pulmozyme, singulair, nasonex, axithromycin, tobi sometimes. We keep calories around 6000 and up. Ensure plus is great. We do PEP therapy only and it has been very effective. Jake is our oldest at 21 he weighs 200lbs and is 6'. His pfts are 95 and have been even higher. Zack is 19 weighs 155 and is 5'10". His pfts are around 70. He is the only one to be hospitalized. He requested a gtube for nocturnal feeding to gain extra weight. They aren't kidding the higher the bmi the better they do. Kane is 16 he weighs 165 and is 6'. His last pfts were 125. We really push physical activity. All three play hockey and Kane even plays travel. They all did high school sports. We live in Canada not sure where you are but it is wonderful what the internet can do. Look forward to hearing more from you.

 

[imported_Momto2]

Hi there. I understand your frustration because it really doesnt seem to make sense. If it were my daughter, I would get a second opinion, simply because I come from the theory, "if it aint broke, dont fix it!. I was born completely pancreatic insufficient. Over the years, I developed coping mechanisms, and even though I am still very PI, I have none of symptoms of it- great weight, no fat in the stool, no stomach issues, vitamin levels all good, etc. If your daughter is thriving and not having stomach pain, no oily stools, vitamin levels normal,- I would leave well enough alone. Keep an eagle eye on her of course and if ANYTHING changes, re-evalute and consider enzymes. But I personally wouldnt mess with a good situation.

I'll add something else. When I was a baby, I was doing OK w/no enzymes. The docs put a huge amount of pressure on my mom to stop breast feeding and switch to forumula and enzymes. I immediately lost weight and started having a great deal of difficulty with digestion and stomach pain. Just my 2 cents.