talked to Noah dietition about him still having....

[Guest guest]

I think the soy is not digested and can cause some kind of chemical buildup

in cf'ers intestines. I will look and see if I can find it, you could look in

the archives under soy formula and I think it will bring up past list talk

about that subject.Have you tried almintum(sp?),or Nutramigin these are supposed

to be for hypersensitive systems.They tried these plus 5 other formulas on my

8th baby as a preemie no cf he just never tollerated anything but My milk it

took 29 months to get him drinking whole milk but it worked.All of my 8 kids

have had problems with milk until after their 2nd birthday.My 3rd baby had to

drink (formula /no milk)until he was 7.His doctors just kept saying his

intestines would have to regrow the billi to help him digest milk. He had an

allergy

/reaction to sucrose and lactose it was called intollerance not allergy. Good

Luck! Becky -Mama to 8 -2w/cf-and Nana to 2

[Guest guest]

problems with the soy milk. He is already at a high dose of the

pancrecarb ms-8. He takes 4 with a meal. So she really doesn't want

to go up anymore and neither do it. She hasn't said anything about

him possibly haveing a problem digesting the soy milk. Like i am

hearing from you guys and others i talk to on the net. She told me

that she doesn't want to go up on his meds everytime he has a bad

day. But it isn't just a bad day. this has been going on and off

for the last cuple of weeks. The first week he did fine on the soy

and now he is having problems again. I am thinking i should just go

and get the rice milk and try it even though she hasn't told me to

try it. I feel as though i am getting no help from her. i swear i

have talked to her ever week since may 23. I am gettig tired of

calling there and getting the same answer to the same problem. Also

do you guys think i should stop giveing him his soy yogurt too. I am

just not sure what to do. TIA

mom to Breanna and Noah

[Guest guest]

You know what? You're his mom. That's it. Period.

There is absolutely no reason why you can't switch to rice milk to see how it

does. He is not their kid and they don't live with him every day like you do.

We had this same kind of fight with the dietician and our cf doc. (who I really

do like) about Patti's formula when she was a baby. Ultimately I just told them

I was switching... You know what? There's not a darn thing they can do about

it. If it doesn't interfere with his meds then try a switch.

Now I have a question for you, and you may have already told us... What is his

stomach acid level like? Is he on anything for that? Many times Patti will

have bad bowel days if she has had too many acidic foods or juices, even if her

enzyme dosage was right. She takes reglan and xantac. If he isn't on something

like that and your doc won't look into it then try giving him a dose of

children's mylanta 30 minutes before he eats. It needs to be in that time

frame so that the enzymes won't break down too soon.

Sorry if my post was more like a vent. I just hate it when medical people get

wishy-washy. If they won't step up to the plate and try to make a decision then

it's up to you to do so.

love ya,

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

In a message dated 6/14/2003 9:19:08 AM Central Daylight Time,

jleffler9499@... writes:

>

> problems with the soy milk. He is already at a high dose of the

> pancrecarb ms-8. He takes 4 with a meal. So she really doesn't want

> to go up anymore and neither do it. She hasn't said anything about

> him possibly haveing a problem digesting the soy milk. Like i am

> hearing from you guys and others i talk to on the net. She told me

> that she doesn't want to go up on his meds everytime he has a bad

> day. But it isn't just a bad day. this has been going on and off

> for the last cuple of weeks. The first week he did fine on the soy

> and now he is having problems again. I am thinking i should just go

> and get the rice milk and try it even though she hasn't told me to

> try it. I feel as though i am getting no help from her. i swear i

> have talked to her ever week since may 23. I am gettig tired of

> calling there and getting the same answer to the same problem. Also

> do you guys think i should stop giveing him his soy yogurt too. I am

> just not sure what to do. TIA

>

> mom to Breanna and Noah

Mom's know best!!! Do what you think is right!!! Deb A

[Guest guest]

Dawn

Wel i got his allergy results in the mail yesterday and his numbers

for soy are in the non detected range. So it looks to me like he is

one of the cf'rs that can not digest soy milk. We go to see the

allergist on tuesday and while i am out i am going to pick up some

rice milk.

Yes he is on something for the acid in his stomach. we never got any

numbers but he is on tagamet 1ml 2x a day. I have asked about that

needing to go up but get no response. you know up until now i have

loved our clininc but at the moment i am not so crazy about them.

Thanks for reasuring me on the switch. I just wish it was more

available locally so that i didn't have to wait until tuesday. lol

Now i will just have to get the dietition to give me something that

can boost his fat and protein in the rice milk.

> You know what? You're his mom. That's it. Period.

>

> There is absolutely no reason why you can't switch to rice milk to

see how it does. He is not their kid and they don't live with him

every day like you do. We had this same kind of fight with the

dietician and our cf doc. (who I really do like) about Patti's

formula when she was a baby. Ultimately I just told them I was

switching... You know what? There's not a darn thing they can do

about it. If it doesn't interfere with his meds then try a switch.

>

> Now I have a question for you, and you may have already told us...

What is his stomach acid level like? Is he on anything for that?

Many times Patti will have bad bowel days if she has had too many

acidic foods or juices, even if her enzyme dosage was right. She

takes reglan and xantac. If he isn't on something like that and your

doc won't look into it then try giving him a dose of children's

mylanta 30 minutes before he eats. It needs to be in that time

frame so that the enzymes won't break down too soon.

>

> Sorry if my post was more like a vent. I just hate it when medical

people get wishy-washy. If they won't step up to the plate and try

to make a decision then it's up to you to do so.

>

> love ya,

> Dawn mom of 4, 7 and under, the youngest wcf

>

>

[Guest guest]

I hope all goes well for you and Noah. I will keep my fingers crossed for you

guys. ;-)

Dawn mom of 4, 7 and under, the youngest wcf

Re: talked to Noah dietition about him still having....

Dawn

Wel i got his allergy results in the mail yesterday and his numbers

for soy are in the non detected range. So it looks to me like he is

one of the cf'rs that can not digest soy milk. We go to see the

allergist on tuesday and while i am out i am going to pick up some

rice milk.

Yes he is on something for the acid in his stomach. we never got any

numbers but he is on tagamet 1ml 2x a day. I have asked about that

needing to go up but get no response. you know up until now i have

loved our clininc but at the moment i am not so crazy about them.

Thanks for reasuring me on the switch. I just wish it was more

available locally so that i didn't have to wait until tuesday. lol

Now i will just have to get the dietition to give me something that

can boost his fat and protein in the rice milk.

> You know what? You're his mom. That's it. Period.

>

> There is absolutely no reason why you can't switch to rice milk to

see how it does. He is not their kid and they don't live with him

every day like you do. We had this same kind of fight with the

dietician and our cf doc. (who I really do like) about Patti's

formula when she was a baby. Ultimately I just told them I was

switching... You know what? There's not a darn thing they can do

about it. If it doesn't interfere with his meds then try a switch.

>

> Now I have a question for you, and you may have already told us...

What is his stomach acid level like? Is he on anything for that?

Many times Patti will have bad bowel days if she has had too many

acidic foods or juices, even if her enzyme dosage was right. She

takes reglan and xantac. If he isn't on something like that and your

doc won't look into it then try giving him a dose of children's

mylanta 30 minutes before he eats. It needs to be in that time

frame so that the enzymes won't break down too soon.

>

> Sorry if my post was more like a vent. I just hate it when medical

people get wishy-washy. If they won't step up to the plate and try

to make a decision then it's up to you to do so.

>

> love ya,

> Dawn mom of 4, 7 and under, the youngest wcf

>

>