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Hi Melinda there was no reason, they thought since he gained 3 pounds in

three weeks on two enzymes that he would do even better on three, that to me

is a bunch of horse poo because it has not been better for him.

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well it was horrible, my son has been crying off and on about him

being not able to go, I called his pulmonologist and they told me to

get milk of magnesia and nothing happened except it caused him more

discomfort and made his tummy hurt, it made me very mad that the

dctors tell me that it is quite normal, but they aren't the ones

seing my son in pain,well just about a half an hour my son tried to

go and he was screaming, so I tried to help him and managed to get 2

golf size stools out of him, and he started to bleed from pushing so

hard, I started to panic, so I called the dr. again about my concerns

and worry and was told to increase the milk of mag, so I did they

also told me to get the suppositories and I went and bought him some,

so when I got home I walked into the door and my son apparently had

just passed a size about a tennis ball stool, but he seemed not to

have had

the difficulty and pain as previously,so I wonder how much more poop

is still up there and if I should still continue giving him more of

th milk of mag, ok I got a question if any one can answer,the dr told

me that he needs to be put on more enzymes to help with the

constipation, but when he was only on two enzymes with meals and one

with snacks, he had no problems but now on three enzymes he has had

more problems, now shouldn't I decrease his enzymes back to his two

instead of three,I am going to call the gi dr nd see what we can do,

the other drs just want to put him on mneral oil to control the

constipation,but why cant I just put hm back on the dose that doesn't

hurt him? I wonder sometimes about doctors really listening to what

is going on.well sorry for this to be so long, I am upset and needed

to vent, thankyou all for your advice, it really helped when talking

to the drs. kelly

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Bless him, bless you too. Shall we all get togeather and kick some doctor

behind for you? :-)

Dawn mom of 4, 5 and under, the youngest wcf

constipation advice

> well it was horrible, my son has been crying off and on about him

> being not able to go, I called his pulmonologist and they told me to

> get milk of magnesia and nothing happened except it caused him more

> discomfort and made his tummy hurt, it made me very mad that the

> dctors tell me that it is quite normal, but they aren't the ones

> seing my son in pain,well just about a half an hour my son tried to

> go and he was screaming, so I tried to help him and managed to get 2

> golf size stools out of him, and he started to bleed from pushing so

> hard, I started to panic, so I called the dr. again about my concerns

> and worry and was told to increase the milk of mag, so I did they

> also told me to get the suppositories and I went and bought him some,

> so when I got home I walked into the door and my son apparently had

> just passed a size about a tennis ball stool, but he seemed not to

> have had

> the difficulty and pain as previously,so I wonder how much more poop

> is still up there and if I should still continue giving him more of

> th milk of mag, ok I got a question if any one can answer,the dr told

> me that he needs to be put on more enzymes to help with the

> constipation, but when he was only on two enzymes with meals and one

> with snacks, he had no problems but now on three enzymes he has had

> more problems, now shouldn't I decrease his enzymes back to his two

> instead of three,I am going to call the gi dr nd see what we can do,

> the other drs just want to put him on mneral oil to control the

> constipation,but why cant I just put hm back on the dose that doesn't

> hurt him? I wonder sometimes about doctors really listening to what

> is going on.well sorry for this to be so long, I am upset and needed

> to vent, thankyou all for your advice, it really helped when talking

> to the drs. kelly

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> 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.

>

> --------------------------------------------------

>

>

>

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-

I think it is agreat idea that you callthe GI doc, and tell them that he was

better on two enzymes, and three seem to constipate. Why was he put on

three to begin with? Whatever the reason, he may just need half of a third

one. Glad he's at least gone a little. Have you gone ahead and used the

suppositiry to try to releive anything else that may be in there? This may

just be a one time thing, and you could continue the new enzyme dose and

see, but it would be scary to go through this again. At least your medicine

cabinet is full, and you could act right away. Good luck tonight!

Melinda - mom to son 2.5 wcf and sister 25 wcf

constipation advice

well it was horrible, my son has been crying off and on about him

being not able to go, I called his pulmonologist and they told me to

get milk of magnesia and nothing happened except it caused him more

discomfort and made his tummy hurt, it made me very mad that the

dctors tell me that it is quite normal, but they aren't the ones

seing my son in pain,well just about a half an hour my son tried to

go and he was screaming, so I tried to help him and managed to get 2

golf size stools out of him, and he started to bleed from pushing so

hard, I started to panic, so I called the dr. again about my concerns

and worry and was told to increase the milk of mag, so I did they

also told me to get the suppositories and I went and bought him some,

so when I got home I walked into the door and my son apparently had

just passed a size about a tennis ball stool, but he seemed not to

have had

the difficulty and pain as previously,so I wonder how much more poop

is still up there and if I should still continue giving him more of

th milk of mag, ok I got a question if any one can answer,the dr told

me that he needs to be put on more enzymes to help with the

constipation, but when he was only on two enzymes with meals and one

with snacks, he had no problems but now on three enzymes he has had

more problems, now shouldn't I decrease his enzymes back to his two

instead of three,I am going to call the gi dr nd see what we can do,

the other drs just want to put him on mneral oil to control the

constipation,but why cant I just put hm back on the dose that doesn't

hurt him? I wonder sometimes about doctors really listening to what

is going on.well sorry for this to be so long, I am upset and needed

to vent, thankyou all for your advice, it really helped when talking

to the drs. kelly

PLEASE do not post religious emails to the list.

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

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.

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

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I have to agree with you. If his stool was ok and seemed good digestive

wise, then why change a good thing, just because he gained weight. I think

you're on to something! Stick to your guns. Melinda

Re: constipation advice

Hi Melinda there was no reason, they thought since he gained 3 pounds in

three weeks on two enzymes that he would do even better on three, that to

me

is a bunch of horse poo because it has not been better for him.

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I can only speak from my own experience, and it may be different than

yours, but with MY three and 1/2 year old son with cf, increased

enzymes = horrible constipation. . . wheras decreased enzymes = soft,

but still well-formed stools. (And good weight-gain, too.)

Every time I see the nutritionist/dietician at clinic, she looks at

his chart and says, " hmmmmm, his enzyme dosage is really low

considering his weight... "

I just smile and nod and ignore the suggestions to increase it. She

also stated that the constipation was from too few enzymes, but like

you said, they don't see the kid screaming in agony on the toilet

trying to pass a brick after the enzymes are increased.

The physicians are well-trained, and really mean well, but none of

them can possibly have a clue what's going on with every patient all

the time.

My advice is to go with your gut. He's your child. You can keep the

enzymes low, then show the doctor that the results are good at that

dose at the next clinic visit. Or you can call and let them know

that's what you plan to do and say that you want to give the lower

dose a trial to see if that resolves the constipation.

Or you can keep him at the higher dose and keep lots of milk of

magnesia on hand.

The really hard part about caring for a child with cf is that there

really are no concrete answers, no guideline that works the same for

every person. Even among siblings with cf, treatment has to be

catered to the individual because the disease presents so differently

in each.

Good luck!

~

mommy of 3, 1 wcf

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,

As silly as it sounds, to much AND to little enzyme causes constipation. We

had alot of constipation trouble for 3 years with Eilish and the GI

mentioned that people cut the enzymes back which makes matters worse, you

need the correct dose. As we used to try and give her a milky thing without

enzymes to try and give her diahorrea, but nothing worked. Maybe cut it

down by 1/2 a capsule and see how it goes. Did he ever get a sore poop and

got scared? Eilish did and didn;t poop on the toilet until she was over 3.

constipation advice

> well it was horrible, my son has been crying off and on about him

> being not able to go, I called his pulmonologist and they told me to

> get milk of magnesia and nothing happened except it caused him more

> discomfort and made his tummy hurt, it made me very mad that the

> dctors tell me that it is quite normal, but they aren't the ones

> seing my son in pain,well just about a half an hour my son tried to

> go and he was screaming, so I tried to help him and managed to get 2

> golf size stools out of him, and he started to bleed from pushing so

> hard, I started to panic, so I called the dr. again about my concerns

> and worry and was told to increase the milk of mag, so I did they

> also told me to get the suppositories and I went and bought him some,

> so when I got home I walked into the door and my son apparently had

> just passed a size about a tennis ball stool, but he seemed not to

> have had

> the difficulty and pain as previously,so I wonder how much more poop

> is still up there and if I should still continue giving him more of

> th milk of mag, ok I got a question if any one can answer,the dr told

> me that he needs to be put on more enzymes to help with the

> constipation, but when he was only on two enzymes with meals and one

> with snacks, he had no problems but now on three enzymes he has had

> more problems, now shouldn't I decrease his enzymes back to his two

> instead of three,I am going to call the gi dr nd see what we can do,

> the other drs just want to put him on mneral oil to control the

> constipation,but why cant I just put hm back on the dose that doesn't

> hurt him? I wonder sometimes about doctors really listening to what

> is going on.well sorry for this to be so long, I am upset and needed

> to vent, thankyou all for your advice, it really helped when talking

> to the drs. kelly

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> 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.

>

> --------------------------------------------------

>

>

>

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Hi ,

that really sounds like BS to me too. At least the docs should have

told you to decrease the dose immediately, when problems arise. I

personally would never change a winning team.

And the advice to give your son mineral oil is a two bladed knife

too. If he refluxes and aspirates it into his lung, you are in big

trouble again. I would readjust the enzyme dose first.

Are you attending a CF center? I would ask the docs to tell you the

pros and cons the next time they fiddle around with your sons

medication. And don't be shy to express your concerns. Good docs

listen to mum's instincts.

Peace

Torsten, dad of Fiona 4wcf

> Hi Melinda there was no reason, they thought since he gained 3

pounds in

> three weeks on two enzymes that he would do even better on three,

that to me

> is a bunch of horse poo because it has not been better for him.

>

>

>

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,

You didn't say why the doctors wanted you to increase the enzymes. But I

would think if he is not having any problems with putting weight on then I

can't understand why they would want to increase his dose. If his weight is

OK I would go back to his a regional dosage. Deb

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