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Sara,

My daughter had tubes in her ears before she was a year old. She had three

sets all together. One set was pushed out by an infection that clogged the

tube and pushed it out. After she reached about three, the ear infections

slowed down. She had more than 11 ear infections before she was a year old.

Along with many other issues. I wouldn't go by what the general consensus

says. Each child whether cf or not are unique in their illnesses and

health.

Tina W., mother of , 17 yoa wcf

VERY CONFUSED

Hi everyone,

I am getting information from my cf coordinator at our cf clinic

that does not seem to go along with what others have experienced.

First, Zach is having a lot of ear infections. I was told that cf

kids really do not get many ear infections because their immune

systems are so revved up that they can fight these infections off

easily. I think she was politely telling me that his ear infections

are not cf related, but I insisted on an ENT consult anyway and they

are humoring me. Secondly, Zach is once again having large yellow

mushy stools. I told the cf coordinator that we had modified Zach's

diet and he had gained weight and had formed stools. But since

Friday he is having a lot of absorption problems. She was alarmed

that I had restricted Zach's diet because as long as cf people take

their enzymes they can eat anything they want. Long story short we

are starting a 72 hour fat stool study tonight. She was amazed that

I agreed to this, but I will do anything to make my baby feel

better. Period.

I think she is using some flawed logic with some of her assumptions

and I think she is getting tired of me.

What are your thoughts?????

Sara - mommy to Zach 19 months wcf

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Did she see a special ENT that knew about cf or just a pediatric ent?

I had tubes as a kid and my four year old niece has had tubes

twice. I am certainly not against doing that, but no one has

mentioned tubes yet. If tubes can help Zach have fewer ear

infections and fewer instances of antibiotics, then I thinnk that

may be the way to go.

Thanks for the info.

Sara

> Sara,

> My daughter had tubes in her ears before she was a year old. She

had three

> sets all together. One set was pushed out by an infection that

clogged the

> tube and pushed it out. After she reached about three, the ear

infections

> slowed down. She had more than 11 ear infections before she was a

year old.

> Along with many other issues. I wouldn't go by what the general

consensus

> says. Each child whether cf or not are unique in their illnesses

and

> health.

>

> Tina W., mother of , 17 yoa wcf

>

> VERY CONFUSED

>

>

> Hi everyone,

> I am getting information from my cf coordinator at our cf clinic

> that does not seem to go along with what others have experienced.

> First, Zach is having a lot of ear infections. I was told that cf

> kids really do not get many ear infections because their immune

> systems are so revved up that they can fight these infections off

> easily. I think she was politely telling me that his ear

infections

> are not cf related, but I insisted on an ENT consult anyway and

they

> are humoring me. Secondly, Zach is once again having large yellow

> mushy stools. I told the cf coordinator that we had modified

Zach's

> diet and he had gained weight and had formed stools. But since

> Friday he is having a lot of absorption problems. She was alarmed

> that I had restricted Zach's diet because as long as cf people

take

> their enzymes they can eat anything they want. Long story short

we

> are starting a 72 hour fat stool study tonight. She was amazed

that

> I agreed to this, but I will do anything to make my baby feel

> better. Period.

> I think she is using some flawed logic with some of her

assumptions

> and I think she is getting tired of me.

> What are your thoughts?????

> Sara - mommy to Zach 19 months wcf

>

>

>

>

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Sara,

We went to a pediatric ENT. I don't know that he knew about CF. We were

referred by our family doc. I was concerned about the damage to the ear

drum and hearing. They also tried to do hearing tests to determine if there

was any damage but she was just to small and at that point did not like the

people in white coats.

Tina W.

VERY CONFUSED

>

>

> Hi everyone,

> I am getting information from my cf coordinator at our cf clinic

> that does not seem to go along with what others have experienced.

> First, Zach is having a lot of ear infections. I was told that cf

> kids really do not get many ear infections because their immune

> systems are so revved up that they can fight these infections off

> easily. I think she was politely telling me that his ear

infections

> are not cf related, but I insisted on an ENT consult anyway and

they

> are humoring me. Secondly, Zach is once again having large yellow

> mushy stools. I told the cf coordinator that we had modified

Zach's

> diet and he had gained weight and had formed stools. But since

> Friday he is having a lot of absorption problems. She was alarmed

> that I had restricted Zach's diet because as long as cf people

take

> their enzymes they can eat anything they want. Long story short

we

> are starting a 72 hour fat stool study tonight. She was amazed

that

> I agreed to this, but I will do anything to make my baby feel

> better. Period.

> I think she is using some flawed logic with some of her

assumptions

> and I think she is getting tired of me.

> What are your thoughts?????

> Sara - mommy to Zach 19 months wcf

>

>

>

>

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Sara,

Is there anyone that you can complain to about her. This is insane

all of the stuff that she is doing. In my opinion there is a lot of

other stuff than just breating problems and fat absorption problems

related to CF. This lady is crazy. Look at each one of our kids going

through something totally different each day and all CF related some how

or another. I bet you are at your wits end I am sorry for all of this

you have to deal with.

Love to you and Zach poor little baby

Ashauna

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