Re: bowel obstructions/DIOS or whatever

[Guest guest]

,

Yes, that is cool! What gene mutations does have? Just

curiuos if she has a mutation that is less prone to digestive issues.

Thanks,

Gale

> Deb, You didn't ask me, but Yes they can. had this happen

quite a few times before we finally figured out she didn't need

enzymes! Natalia is right, but wouldn't drink the go-lightly

so had to have a ng tube and get it that way. I couldn't blame her,

she is very fussy with taste and it tastes horrible. We eventually

reduced enzymes from Ultrace MT 20's to regular Ultrace (slowly) and

then she finally just stopped taking them with no ill effect. She

really did use to need them. She had had a fecal fat test (when she

was 13) and it showed she was mal absorbing. Not sure what happened,

but during her last tune up they tested her stool and it was normal.

so no more enzymes. The doc said she could need them again at some

point but not for now. cool huh?

>

> love,

> M

> mom of Nick age 21 nocf , age 19 wcf, and Lucy age 1 K9 very

furry.

>

>

>

>

[Guest guest]

Hi Gale,

has one df 508 and the other is rare, G1061R. It took us a long time to

find that second mutation, Ambry finally found it after running 's sample

twice. It wasn't found until April of 2003 and we sent the sample in Dec of

2001. I guess it is a recently discovered mutation.

They did not know if this is why she is pancreatic sufficient, but it could be I

guess. They have very little or no info on this mutation, I looked it up and it

mentioned 2 girls in France who have it, and they had told me that it comes from

France. No one I know of in either mine or my husband's families is French but

that doesn't mean anything, I realize that.

love,

M

Re: bowel obstructions/DIOS or whatever

,

Yes, that is cool! What gene mutations does have? Just

curiuos if she has a mutation that is less prone to digestive issues.

Thanks,

Gale

[Guest guest]

,

It amazes me that a mutatin so rare doesn't die out.

Gale

> Hi Gale,

> has one df 508 and the other is rare, G1061R. It took us a

long time to find that second mutation, Ambry finally found it after

running 's sample twice. It wasn't found until April of 2003

and we sent the sample in Dec of 2001. I guess it is a recently

discovered mutation.

>

> They did not know if this is why she is pancreatic sufficient, but

it could be I guess. They have very little or no info on this

mutation, I looked it up and it mentioned 2 girls in France who have

it, and they had told me that it comes from France. No one I know of

in either mine or my husband's families is French but that doesn't

mean anything, I realize that.

>

> love,

> M

> Re: bowel obstructions/DIOS or whatever

>

>

> ,

>

> Yes, that is cool! What gene mutations does have? Just

> curiuos if she has a mutation that is less prone to digestive

issues.

>

> Thanks,

> Gale

>

>

>

>

>

[Guest guest]

In a message dated 1/7/2004 1:40:30 PM Central Standard Time,

brmorey@... writes:

Deb, You didn't ask me, but Yes they can. had this happen quite a few

times before we finally figured out she didn't need enzymes! Natalia is

right, but wouldn't drink the go-lightly so had to have a ng tube and get

it that way. I couldn't blame her, she is very fussy with taste and it tastes

horrible. We eventually reduced enzymes from Ultrace MT 20's to regular

Ultrace (slowly) and then she finally just stopped taking them with no ill

effect.

She really did use to need them. She had had a fecal fat test (when she was

13) and it showed she was mal absorbing. Not sure what happened, but during

her last tune up they tested her stool and it was normal. so no more enzymes.

The doc said she could need them again at some point but not for now. cool

huh?

love,

M

mom of Nick age 21 nocf , age 19 wcf, and Lucy age 1 K9 very furry.

OH WOW!! That would be GREAT if she didn't need enzymes!! I just don't know

what to think. She hasn't been putting the weight on much the last 9 months and

we increased her enzymes and she still complains about her stomach. Maybe I

should try to go without and see what happens. I just hate see her hurting. Deb

A

[Guest guest]

In a message dated 1/7/2004 2:23:26 PM Central Standard Time,

brmorey@... writes:

Hi Gale,

has one df 508 and the other is rare, G1061R. It took us a long time

to find that second mutation, Ambry finally found it after running 's

sample twice. It wasn't found until April of 2003 and we sent the sample in Dec

of 2001. I guess it is a recently discovered mutation.

They did not know if this is why she is pancreatic sufficient, but it could

be I guess. They have very little or no info on this mutation, I looked it up

and it mentioned 2 girls in France who have it, and they had told me that it

comes from France. No one I know of in either mine or my husband's families is

French but that doesn't mean anything, I realize that.

love,

M

My daughters carry the delta f508 and they carry a rare mutation too but it

is different then you daughter it is 1717-IG-A.Deb A

[Guest guest]

Deb,

I don't know if I would just have (that is who we are talking about

right?) stop the enzymes without speaking to her doctor. If she is impacted she

needs an x-ray to check the extent of the blockage and she would need go-lightly

or some way of removing the blocked stool. So please don't just take her off

enzymes without talking with her doc! It might be a very bad idea. I just

don't want you to get the wrong idea. Please let us know what happens. She

should not have all this stomach pain, it is not normal for a cwcf (or any

child).

love,

Deb wrote,

OH WOW!! That would be GREAT if she didn't need enzymes!! I just don't know

what to think. She hasn't been putting the weight on much the last 9 months

and

we increased her enzymes and she still complains about her stomach. Maybe I

should try to go without and see what happens. I just hate see her hurting.

Deb

A

[Guest guest]

In a message dated 1/8/2004 1:32:16 PM Central Standard Time,

brmorey@... writes:

Deb,

I don't know if I would just have (that is who we are talking about

right?) stop the enzymes without speaking to her doctor. If she is impacted

she needs an x-ray to check the extent of the blockage and she would need

go-lightly or some way of removing the blocked stool. So please don't just take

her off enzymes without talking with her doc! It might be a very bad idea. I

just don't want you to get the wrong idea. Please let us know what happens.

She should not have all this stomach pain, it is not normal for a cwcf (or any

child).

love,

,

No it's my youngest (Natalynn) that is complaining in fact she had just had a

bowl movement and it wasn't 5 minutes later she was complaining that it hurt

on her side and kind of her back area. I just can't figure this out. She has

never complain of her side hurting before. She told me tonight that if she

twist just a little bit it really really hurts. Any ideas?? Deb A

[Guest guest]

Deb wrote

No it's my youngest (Natalynn) that is complaining in fact she had just had a

bowl movement and it wasn't 5 minutes later she was complaining that it hurt

on her side and kind of her back area. I just can't figure this out. She has

never complain of her side hurting before. She told me tonight that if she

twist just a little bit it really really hurts. Any ideas?? Deb A

Deb, I really don't know, like I said I really think you should call her

doctor. If anyone else can help please chime in here.

love,

[Guest guest]

What side? it might be unrelated to CF. It could be kidney or appendix?

Re: bowel obstructions/DIOS or whatever

Deb wrote

No it's my youngest (Natalynn) that is complaining in fact she had just had

a

bowl movement and it wasn't 5 minutes later she was complaining that it hurt

on her side and kind of her back area. I just can't figure this out. She has

never complain of her side hurting before. She told me tonight that if she

twist just a little bit it really really hurts. Any ideas?? Deb A

Deb, I really don't know, like I said I really think you should call her

doctor. If anyone else can help please chime in here.

love,

[Guest guest]

In a message dated 1/10/2004 2:55:04 PM Central Standard Time,

drea@... writes:

What side? it might be unrelated to CF. It could be kidney or appendix?

I think it was her left side. Deb A

[Guest guest]

Hi Gale,,

Someone else may have already answered but,

DIOS stands for Distal Illius (or intestinal--not sure) Obstruction Syndrome.

They used to call it MIE (Meconium Illius equivalent). Its a bowel obstruction.

love,

[Guest guest]

I noticed that you said you looked up the mutation that your daughter has. My

daughter was only diagnosed in May 2003, so I'm learning, but where did you go

to look it up?

Tracey

Re: bowel obstructions/DIOS or whatever

,

Yes, that is cool! What gene mutations does have? Just

curiuos if she has a mutation that is less prone to digestive issues.

Thanks,

Gale