Re: Pancreatic sufficiency ??

March 7, 2003

In a message dated 3/7/03 3:45:48 PM Eastern Standard Time,

remi_mijo@... writes:

> Does anyone has a sufficient child? Do they have similar problems?

> From what we read, a lot of cf children can become insufficient by

> the age of 3. Does anyone has noticed that with his child? What

> happened?

>

was considered insufficient since dx and was taking Creons. Just two

years ago she did the fecal fat test and found her to be sufficient. She has

always been constipated so this was not a surprise to us. This has not

changed since taking her off of the enzymes so far. She is on Miralax

everyday to help her mover her bowels.

- Sally -

Mom of :

Bri--14--JV cheerleader

--12--w/asthma

--9--w/cf & ds

March 7, 2003

Hi just wanted to jump into this one being that both my kids are HIGHLY

insufficient. Maureen was not diagnosed until she was 8yrs old and she also

has Crohn's so it is hard to determine when she became insufficient. But I

will say she had tummy trouble ALL her life. And then there is Jack. He had

greasy BMs before he was a week old and he had lost 2 pounds within 2 weeks

after leaving the hospital. He did not gain or have more regular and normal

stools until he was on enzymes at 4 weeks old.

Meg

Mom of 3; 12yowcf & Crohn's, 7 yowocf, 2yowcf & GERD

March 7, 2003

Just a note, we did the 3 day fecal fat when Christian was diagnosed and was

told he didn't need enzymes. He weighed 52 pounds at 9, gained about 6

pounds right after diagnoses I feel it was because his body was able to use

at least some of the tons of food that he was eating. Then he just stopped

gaining, he started having to go to the bathroom during meals and we had to

buy air freshener in bulk. they decided in June to try him again on enzymes

and he is doing great! Up to 76 pounds and no " floaters. " I think maybe a

trial on enzymes would be in order and I am sure the doctor will agree once

he hears everything that is going on.

Tina Mom to Christian 11 yowcf and 19 yowocf

March 7, 2003

Marie-e,

My soon to be three-year-old son is pancreatic sufficient. He has a stool

about every 1 to 2 days and is sometimes constipated. His stools are

usually very well formed (too well sometimes?). JC is a little on the thin

side but so is his dad.

One of JC's mutations (2789+5G>A) is supposed to be pacreatic sufficient and

apparently in our case it is. His other mutation is R1162X. I am not

familiar with the mutation you mention.

Your description of your son, , sounds to me like he probably needs

enzymes. I would ask to try the enzymes and see if it helps. I don't think

it can hurt. And keep on breastfeeding! That is one of the best things you

can do for him.

And your English is fine.

Angie Partin (Ma to JC, 3 yo in 10 days, wcf)

Pancreatic sufficiency ??

Hi everyone,

Here's our story and we will really appreciate any infos or

experiences related to any of our concerns. Thank you.

Our son is considered as pancreatic sufficient. He did two

72hours stool tests of fat output (one at six weeks and one at 1

year) , both negative. But , we still are concern about some problems

he has : He is now 18 months, doing 5 stool per day. Stools are

smelling more than ever and are rarely « shaped ». And he has some

problems since he hs 6 months old with his weight. He is very tall (a

lot over 97 perc.) and not big (50 perc.) : his height/weight ratio

is around or under the 5th percentile. His weight curve dropped from

95 to 50.

Does anyone has a sufficient child? Do they have similar problems?

>From what we read, a lot of cf children can become insufficient by

the age of 3. Does anyone has noticed that with his child? What

happened?

got his intestin perforated intra-utero and had a surgery at

birth (colostomia for three months). That increase our concerns

because we know that a vast majority of cf person who had a meconium

ileus are pancreatic insufficient.

Also, I'm still breastfeeding him three times a day and I'm also

concern that it can " hide " an insufficiency.

We are not sure either if we should ask for an Elastase-1 stool

test . We have read that it is not very good for a small pancreantic

insufficiency but we are not sure of this information. Does anyone

knows? This test is not avalaible in Canada and we will have to go

in US and pay to get it. So better to know before...

One of 's mutation (R347 P) is generally considered as

a «sufficient » mutation. But from some research we have read , only

around 20% are in fact sufficient. Does anyone knows about this

mutation?

Sorry for that long email.

I really appreciate being a member of this group. I dont write as

often as I would like to because english is not my first language.so

please forgive me for my english mistakes.

Marie-Josée Paquin (mother of , 18 months)

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

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.

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

March 7, 2003

My understanding is that

> most babies with cf are born pancreatic sufficient, then lose the

> ability to digest fats and protein over time, as the mucus thickens

> and blocks the tubes.

That's exactly what we think is happening to ...But our cf clinic

dont think so.. For them, his mutation is sufficient and more 72h

stool test is negative. So let say we need some more infos to be able

to go further with them...

You can ask the doctor for a

> trial of enzymes to see if this helps his absorption.

A stool test negative means for them he doesnt need enzymes. But

thanks a lot for your answer, at least we knonw we are not alone to

find his symptoms weird ...WE must now try to figure out what to do

now.

Marie-Josée

March 7, 2003

I really don't know how much my experience will help you but our

daughter a 9 years old was diagnosed last May(02). Because she

puts weight on w/o any problem, she does not take enzymes, I believe

that's why we never new she had cf. For years all she kept was a

runny nose and about 2 years ago she got a case of walking neumonia

that would not go away, so the Dr. sent us for some x-ray and well

here we are. At any rate, when she was really young, she had 4 and 5

bowel movements, and some time they were smelly some time they were

not. Also, her tummy used to hurt a lot and stool was almost always

big and loose, but she was always very chubby, in fact I used to

have to buy bigger clothes so she could wear them. Well, also I have

noticed with my other two kids, neg cf on them they poop a lot too,

so I do not know.

Well just my 2 cents worth.

Palazola, mom of a 9 pwf, Venanzio 6 ncf, Pepe 3 ncf

> Hi everyone,

> Here's our story and we will really appreciate any infos or

> experiences related to any of our concerns. Thank you.

> Our son is considered as pancreatic sufficient. He did two

> 72hours stool tests of fat output (one at six weeks and one at 1

> year) , both negative. But , we still are concern about some

problems

> he has : He is now 18 months, doing 5 stool per day. Stools are

> smelling more than ever and are rarely « shaped ». And he has some

> problems since he hs 6 months old with his weight. He is very tall

(a

> lot over 97 perc.) and not big (50 perc.) : his height/weight ratio

> is around or under the 5th percentile. His weight curve dropped

from

> 95 to 50.

> Does anyone has a sufficient child? Do they have similar problems?

> From what we read, a lot of cf children can become insufficient by

> the age of 3. Does anyone has noticed that with his child? What

> happened?

>

> got his intestin perforated intra-utero and had a surgery at

> birth (colostomia for three months). That increase our concerns

> because we know that a vast majority of cf person who had a

meconium

> ileus are pancreatic insufficient.

> Also, I'm still breastfeeding him three times a day and I'm also

> concern that it can " hide " an insufficiency…

> We are not sure either if we should ask for an Elastase-1 stool

> test . We have read that it is not very good for a small

pancreantic

> insufficiency but we are not sure of this information. Does anyone

> knows? This test is not avalaible in Canada and we will have to go

> in US and pay to get it. So better to know before...

>

> One of 's mutation (R347 P) is generally considered as

> a «sufficient » mutation. But from some research we have read ,

only

> around 20% are in fact sufficient. Does anyone knows about this

> mutation?

>

> Sorry for that long email.

> I really appreciate being a member of this group. I dont write as

> often as I would like to because english is not my first language…

so

> please forgive me for my english mistakes.

>

> Marie-Josée Paquin (mother of , 18 months)

March 9, 2003

we have two children are pancreatic sufficiency and they both suffer from

constipation and have two or three laxatives a day. the older one who is