Re: preventative antibiotic use

[Guest guest]

Well 20 years ago the cf clinics in the US that were aggresive put a lot of

babies on preventative antibotics.My older cf kid used sulfa based antibotics

for almost his first 3 years.He hasn't been able to use sulfa drugs in over 8

years because of a reaction to them.My 6 year old w/cf has in her short life

been on antibotics as needed,sometimes for 2wks sometimes for 6 weeks she is

now on Zithromax to reduce inflammation in her lungs. I can understand your use

of natural herbs .If your childs doctor is recomending treatment they have to

have cultured something.If your child is just a slow gainer there are things

to boost calories.I would trust the doctors or I would tell them I didn't

trust them and ask for a second opinion like from a Pediatric GI specialist I

could trust.I have never heard of almond milk so I don't have any information.I

know that soy is not advised for cf babies,I breastfed all my kids and used

supplements with both of my cf kids.It is very good to hear your child is doing

ok. I have a theory that a lot of cf kids and preemies in general have weaker

muscles which along with vents to help them breath reflux is a result of medical

intervention damned if you do damned if you don't. I know about the growth

charts and you are right they were made by formula companies as a brag on look

how big the baby gets when they drink this formula.I also know that cf kids

Don't always react as others do with some things. Good Luck.BeckyB.

[Guest guest]

Well, our " kid " wcf had no antibiotics until a giant cough (we kept those

cute

little lidded cups around for the lab) yielded a big, Green Gob, and we took

it

in and our 3-year-old had PA (non-mucoid) and major pneumonia, which was

evident on X-ray and ct scan--but that is just our story. Good luck!

Love to you and to all of yours,

n Rojas, wcf, mom of 3 WILD adults, youngest wcf, too

preventative antibiotic use

> Preventative antibiotic use....does it work or does it create more

> problems? My daughter is 27months, diagnosed at 3months and has not

> been hospitalized nor prescribed any antibiotics thus far(I would

> like to keep it this way). Anyway the clinic we deal with is

> concerned she may be harbouring a bug because her weight gain has

> been slow, she hasn't lost any weight but her curve is under the

> fifth percentile(personally I think these growth charts that we

> compare our children to do not take into account exclusively

> breastfed babies, they are all based on formula fed babies) I say

> this because my daughter was exclusively breastfed until 18 months,

> and when I compare her to other children the same age who were

> exclusively breastfed she does not differ hardly at all.

> However, because the clinic feels she isn't growing normally? they

> want to put her on a round of Tobi and other antibiotics just in case

> she has a bug. I have denied a bronchoscopy because of the risk of

> getting PA after it, and as well I don't agree with exploratory

> procedures. Suffice to say, the clinic does not agree with my

> decisions and feels that the therapy we are conducting isn't enough.

> Eventhough blood tests come back indicating good overall health and

> her x-rays show no congestion in her lungs.

> It infuriates me that these doctors can't see past their studies and

> do not take into account individual characteristics. CF has upwards

> to a thousand different mutations then also consider modifier genes

> that can also affect the severity of the disease, how can these

> doctors feel so confident that these drugs are good for our children

> when they(drugs) haven't even been around long enough to properly

> understand the effects of long time and rountine use.

> I use a very natural and wholistic approach to my daughters treatment

> from chinese herbs, vitmain/mineral supplementation, to a very strict

> non-proceesed, raw diet. We don't have any acid reflux, sickness

> (viral), lung problems, developmental delays nothing, she is a very

> vibrant, smart and happy-go-lucky two year old who has CF. However,

> the clinic rolls their eyes when I explain she doesn't drink milk

> because there is too much phospherous in it which leachs calcium from

> her bones, so I make her almond milk instead which has a higher

> content and more absorable source of calcium and protein. " We're

> sorry but there isn't any conclusive evidence that proves this " , well

> then I must be getting my info from some sci-fi novel!

> Is there anybody else out there who is confronted with these same

> battles? Where you feel these traditional procedures and therapies

> are creating more problems than they are solving? Where having an

> educated, researched opinion of your own doesn't matter because you

> are not the doctor? I tell you sometimes I feel I am in a room full

> of car salesmen.

> I am very interested in hearing from anybody who has any opinion on

> antibiotic use, good and bad. We have to remember most doctors

> graduated with an average score.

>

>

>

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

> 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.

>

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

>

>

>

[Guest guest]

I want to tell you from our experience. To begin with you are ahead

of the game, you know she has cf, we didn't. a was a happy go

lucky child who never needed antibiotics until a pneumonia that would

not go away, she was 8 years old. After an X-ray showed lung damage

she was diagnosed with cf.

I think you should take everything with a grain of salt, you know

your child. I believe doctors know as much as their books and I also

know that every case is very unique, not even 2 children with same

mom and dad, hence same mutations, present same case of CF, one more

or less severe than the other one, it has to do with penetration. A

lot of us around here have taken the best of both worlds, hollistic

and medical, and use to the advantage of our children. I have to say

that if she gets a cold or sniffles watch her. It seems like you do

not have a whole lot of trust in your md right now, find somebody you

trust. Antibiotics are after all our biggest tool against this #@$#

disease, so please, don't see them as a threat.

I wish you the best,

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> Preventative antibiotic use....does it work or does it create more

> problems? My daughter is 27months, diagnosed at 3months and has

not

> been hospitalized nor prescribed any antibiotics thus far(I would

> like to keep it this way). Anyway the clinic we deal with is

> concerned she may be harbouring a bug because her weight gain has

> been slow, she hasn't lost any weight but her curve is under the

> fifth percentile(personally I think these growth charts that we

> compare our children to do not take into account exclusively

> breastfed babies, they are all based on formula fed babies) I say

> this because my daughter was exclusively breastfed until 18 months,

> and when I compare her to other children the same age who were

> exclusively breastfed she does not differ hardly at all.

> However, because the clinic feels she isn't growing normally? they

> want to put her on a round of Tobi and other antibiotics just in

case

> she has a bug. I have denied a bronchoscopy because of the risk of

> getting PA after it, and as well I don't agree with exploratory

> procedures. Suffice to say, the clinic does not agree with my

> decisions and feels that the therapy we are conducting isn't

enough.

> Eventhough blood tests come back indicating good overall health and

> her x-rays show no congestion in her lungs.

> It infuriates me that these doctors can't see past their studies

and

> do not take into account individual characteristics. CF has

upwards

> to a thousand different mutations then also consider modifier genes

> that can also affect the severity of the disease, how can these

> doctors feel so confident that these drugs are good for our

children

> when they(drugs) haven't even been around long enough to properly

> understand the effects of long time and rountine use.

> I use a very natural and wholistic approach to my daughters

treatment

> from chinese herbs, vitmain/mineral supplementation, to a very

strict

> non-proceesed, raw diet. We don't have any acid reflux, sickness

> (viral), lung problems, developmental delays nothing, she is a very

> vibrant, smart and happy-go-lucky two year old who has CF.

However,

> the clinic rolls their eyes when I explain she doesn't drink milk

> because there is too much phospherous in it which leachs calcium

from

> her bones, so I make her almond milk instead which has a higher

> content and more absorable source of calcium and protein. " We're

> sorry but there isn't any conclusive evidence that proves this " ,

well

> then I must be getting my info from some sci-fi novel!

> Is there anybody else out there who is confronted with these same

> battles? Where you feel these traditional procedures and therapies

> are creating more problems than they are solving? Where having an

> educated, researched opinion of your own doesn't matter because you

> are not the doctor? I tell you sometimes I feel I am in a room

full

> of car salesmen.

> I am very interested in hearing from anybody who has any opinion on

> antibiotic use, good and bad. We have to remember most doctors

> graduated with an average score.

[Guest guest]

I haven't read all posts to this message so someone may have already

said this. What do your doctors say about pancreatic insufficiency?

Could that have something to do with the slow weight gains? Does

your daughter get pancreatic enzymes with her food? All my kids were

exclusively breastfed and stayed high on the charts, as have many

kids I know. Has she had positive throat cultures for any CF bugs?

How was she diagnosed - what were her symptoms?

Although Tobi is relatively new, tobramycin has been used via neb for

a long time and they have a pretty good idea what the side effects

are - and there are some. I get mad at doctors and " the system "

also. However with all the imperfections, dirty hospitals,

negligence, inflated egos etc. we have to remember to take full

advantage of EVERYTHING there is to offer for our children and there

are some outstanding doctors out there who really care. If you don't

trust your doctors or the clinic you use, consider trying a new one

(depending on your situation). Like it or not, many of them have a

wealth of knowlege and years of hands on experience with many

individuals with different levels of the disease.

Joe Dad of 3 girls - youngest w/cf and chubby legs

> Preventative antibiotic use....does it work or does it create more

> problems? My daughter is 27months, diagnosed at 3months and has

not

> been hospitalized nor prescribed any antibiotics thus far(I would

> like to keep it this way). Anyway the clinic we deal with is

> concerned she may be harbouring a bug because her weight gain has

> been slow, she hasn't lost any weight but her curve is under the

> fifth percentile(personally I think these growth charts that we

> compare our children to do not take into account exclusively

> breastfed babies, they are all based on formula fed babies) I say

> this because my daughter was exclusively breastfed until 18 months,

> and when I compare her to other children the same age who were

> exclusively breastfed she does not differ hardly at all.

> However, because the clinic feels she isn't growing normally? they

> want to put her on a round of Tobi and other antibiotics just in

case

> she has a bug. I have denied a bronchoscopy because of the risk of

> getting PA after it, and as well I don't agree with exploratory

> procedures. Suffice to say, the clinic does not agree with my

> decisions and feels that the therapy we are conducting isn't

enough.

> Eventhough blood tests come back indicating good overall health and

> her x-rays show no congestion in her lungs.

> It infuriates me that these doctors can't see past their studies

and

> do not take into account individual characteristics. CF has

upwards

> to a thousand different mutations then also consider modifier genes

> that can also affect the severity of the disease, how can these

> doctors feel so confident that these drugs are good for our

children

> when they(drugs) haven't even been around long enough to properly

> understand the effects of long time and rountine use.

> I use a very natural and wholistic approach to my daughters

treatment

> from chinese herbs, vitmain/mineral supplementation, to a very

strict

> non-proceesed, raw diet. We don't have any acid reflux, sickness

> (viral), lung problems, developmental delays nothing, she is a very

> vibrant, smart and happy-go-lucky two year old who has CF.

However,

> the clinic rolls their eyes when I explain she doesn't drink milk

> because there is too much phospherous in it which leachs calcium

from

> her bones, so I make her almond milk instead which has a higher

> content and more absorable source of calcium and protein. " We're

> sorry but there isn't any conclusive evidence that proves this " ,

well

> then I must be getting my info from some sci-fi novel!

> Is there anybody else out there who is confronted with these same

> battles? Where you feel these traditional procedures and therapies

> are creating more problems than they are solving? Where having an

> educated, researched opinion of your own doesn't matter because you

> are not the doctor? I tell you sometimes I feel I am in a room

full

> of car salesmen.

> I am very interested in hearing from anybody who has any opinion on

> antibiotic use, good and bad. We have to remember most doctors

> graduated with an average score.

[Guest guest]

Well, first I would say does a sputum culture show any bugs? If not I would

question the antibiotics too. My daughter did culture PA and has been on Tobi

for over 3 years (one month on, one month off) It did eradicate the PA so, for

us it was worth it. We use some herbal with the standard therapies. There are

many here who do this.

It seems as though you are saying that you believe that exclusively breastfed

babies are usually thinner/smaller than formula fed babies? From my

observations the opposite is often true. For instance, My friends children who

were Huge on breast milk thinned down after going on formula. The same went for

my niece and a few others I know. Aside from that, the growth curve is not an

average of children who are exclusively anything, it is an average of all

healthy babies/children breast fed, formula fed doesn't come into the

calculations.

The slow weight gain could be a sign that she just needs to eat more or that

she may need more high fat food. it is a concern that she is so small because

if she DOES get a bug and needs to be hospitalized, She will, most likely loose

weight and fall under the growth curve. (been there done that)

I am NOT knocking your beliefs or diet, but can you find a way to make, for

instance, the almond milk as high in fat an calories as the whole milk or

whatever concoctions they want her on? It seems that if you can meet their fat,

cal and nutrition requirements within her diet, they shouldn't complain. Some

kids (like mine) end up needing a g-tube. She just couldn't eat enough to

sustain her. she was below the 5th percentile at dx and even with enzymes we

could only get her between the 20th and 25th percentile. She is now between the

50% and 75% for both height and weight. She gets 6 tube feeds a week. She is

very healthy right now and has been for the past 3 years but the first 2 years

were tough. Believe me, I didn't want her to have a tube but I knew it was

right for her.

You have to do what you believe is right for your child.

Is there another clinic that you can investigate near you? maybe these docs are

not the right ones for you.

mom of 5 with CF and one on the way

preventative antibiotic use

Preventative antibiotic use....does it work or does it create more

problems? My daughter is 27months, diagnosed at 3months and has not

been hospitalized nor prescribed any antibiotics thus far(I would

like to keep it this way). Anyway the clinic we deal with is

concerned she may be harbouring a bug because her weight gain has

been slow, she hasn't lost any weight but her curve is under the

fifth percentile(personally I think these growth charts that we

compare our children to do not take into account exclusively

breastfed babies, they are all based on formula fed babies) I say

this because my daughter was exclusively breastfed until 18 months,

and when I compare her to other children the same age who were

exclusively breastfed she does not differ hardly at all.

However, because the clinic feels she isn't growing normally? they

want to put her on a round of Tobi and other antibiotics just in case

she has a bug. I have denied a bronchoscopy because of the risk of

getting PA after it, and as well I don't agree with exploratory

procedures. Suffice to say, the clinic does not agree with my

decisions and feels that the therapy we are conducting isn't enough.

Eventhough blood tests come back indicating good overall health and

her x-rays show no congestion in her lungs.

It infuriates me that these doctors can't see past their studies and

do not take into account individual characteristics. CF has upwards

to a thousand different mutations then also consider modifier genes

that can also affect the severity of the disease, how can these

doctors feel so confident that these drugs are good for our children

when they(drugs) haven't even been around long enough to properly

understand the effects of long time and rountine use.

I use a very natural and wholistic approach to my daughters treatment

from chinese herbs, vitmain/mineral supplementation, to a very strict

non-proceesed, raw diet. We don't have any acid reflux, sickness

(viral), lung problems, developmental delays nothing, she is a very

vibrant, smart and happy-go-lucky two year old who has CF. However,

the clinic rolls their eyes when I explain she doesn't drink milk

because there is too much phospherous in it which leachs calcium from

her bones, so I make her almond milk instead which has a higher

content and more absorable source of calcium and protein. " We're

sorry but there isn't any conclusive evidence that proves this " , well

then I must be getting my info from some sci-fi novel!

Is there anybody else out there who is confronted with these same

battles? Where you feel these traditional procedures and therapies

are creating more problems than they are solving? Where having an

educated, researched opinion of your own doesn't matter because you

are not the doctor? I tell you sometimes I feel I am in a room full

of car salesmen.

I am very interested in hearing from anybody who has any opinion on

antibiotic use, good and bad. We have to remember most doctors

graduated with an average score.

[Guest guest]

Actually I don't think it matters so much where your child is exactly on the

height weight chart I think we can all get a little bit hung up on the whole

thing. I think it is better to look at your child. Does she look healthy or

too thin? All of us are different in our heights and weights and I know

adults who are off the " average " height weight chart but they don't look too

thin or too fat. It would be a worry though if she was on the 50th %ile and

then went down to the 10th. It is probably best if she follows along much

the same %ile whereever that is.

Jack was slow to gain weight and I got so hung up on weighing him and seeing

where he was on the chart that finally I thought no I know my child and he

looks healthy to me now so I am going to stop weighing him all the time and

getting so worried about it all.

Fiona

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: Re: preventative antibiotic use

>Date: Fri, 28 Nov 2003 08:39:22 -0500

>

>

>Well, first I would say does a sputum culture show any bugs? If not I

>would question the antibiotics too. My daughter did culture PA and has

>been on Tobi for over 3 years (one month on, one month off) It did

>eradicate the PA so, for us it was worth it. We use some herbal with the

>standard therapies. There are many here who do this.

>It seems as though you are saying that you believe that exclusively

>breastfed babies are usually thinner/smaller than formula fed babies? From

>my observations the opposite is often true. For instance, My friends

>children who were Huge on breast milk thinned down after going on formula.

>The same went for my niece and a few others I know. Aside from that, the

>growth curve is not an average of children who are exclusively anything, it

>is an average of all healthy babies/children breast fed, formula fed

>doesn't come into the calculations.

> The slow weight gain could be a sign that she just needs to eat more or

>that she may need more high fat food. it is a concern that she is so small

>because if she DOES get a bug and needs to be hospitalized, She will, most

>likely loose weight and fall under the growth curve. (been there done that)

> I am NOT knocking your beliefs or diet, but can you find a way to make,

>for instance, the almond milk as high in fat an calories as the whole milk

>or whatever concoctions they want her on? It seems that if you can meet

>their fat, cal and nutrition requirements within her diet, they shouldn't

>complain. Some kids (like mine) end up needing a g-tube. She just

>couldn't eat enough to sustain her. she was below the 5th percentile at dx

>and even with enzymes we could only get her between the 20th and 25th

>percentile. She is now between the 50% and 75% for both height and weight.

> She gets 6 tube feeds a week. She is very healthy right now and has been

>for the past 3 years but the first 2 years were tough. Believe me, I

>didn't want her to have a tube but I knew it was right for her.

>You have to do what you believe is right for your child.

>Is there another clinic that you can investigate near you? maybe these

>docs are not the right ones for you.

>

>mom of 5 with CF and one on the way

> preventative antibiotic use

>

>

> Preventative antibiotic use....does it work or does it create more

> problems? My daughter is 27months, diagnosed at 3months and has not

> been hospitalized nor prescribed any antibiotics thus far(I would

> like to keep it this way). Anyway the clinic we deal with is

> concerned she may be harbouring a bug because her weight gain has

> been slow, she hasn't lost any weight but her curve is under the

> fifth percentile(personally I think these growth charts that we

> compare our children to do not take into account exclusively

> breastfed babies, they are all based on formula fed babies) I say

> this because my daughter was exclusively breastfed until 18 months,

> and when I compare her to other children the same age who were

> exclusively breastfed she does not differ hardly at all.

> However, because the clinic feels she isn't growing normally? they

> want to put her on a round of Tobi and other antibiotics just in case

> she has a bug. I have denied a bronchoscopy because of the risk of

> getting PA after it, and as well I don't agree with exploratory

> procedures. Suffice to say, the clinic does not agree with my

> decisions and feels that the therapy we are conducting isn't enough.

> Eventhough blood tests come back indicating good overall health and

> her x-rays show no congestion in her lungs.

> It infuriates me that these doctors can't see past their studies and

> do not take into account individual characteristics. CF has upwards

> to a thousand different mutations then also consider modifier genes

> that can also affect the severity of the disease, how can these

> doctors feel so confident that these drugs are good for our children

> when they(drugs) haven't even been around long enough to properly

> understand the effects of long time and rountine use.

> I use a very natural and wholistic approach to my daughters treatment

> from chinese herbs, vitmain/mineral supplementation, to a very strict

> non-proceesed, raw diet. We don't have any acid reflux, sickness

> (viral), lung problems, developmental delays nothing, she is a very

> vibrant, smart and happy-go-lucky two year old who has CF. However,

> the clinic rolls their eyes when I explain she doesn't drink milk

> because there is too much phospherous in it which leachs calcium from

> her bones, so I make her almond milk instead which has a higher

> content and more absorable source of calcium and protein. " We're

> sorry but there isn't any conclusive evidence that proves this " , well

> then I must be getting my info from some sci-fi novel!

> Is there anybody else out there who is confronted with these same

> battles? Where you feel these traditional procedures and therapies

> are creating more problems than they are solving? Where having an

> educated, researched opinion of your own doesn't matter because you

> are not the doctor? I tell you sometimes I feel I am in a room full

> of car salesmen.

> I am very interested in hearing from anybody who has any opinion on

> antibiotic use, good and bad. We have to remember most doctors

> graduated with an average score.

>

>

>

[Guest guest]

My daughter was pretty tall (50%) and VERY skinny. She did not look healthy at

all. She looked way too thin. I think you can tell if they are too small, too.

preventative antibiotic use

>

>

> Preventative antibiotic use....does it work or does it create more

> problems? My daughter is 27months, diagnosed at 3months and has not

> been hospitalized nor prescribed any antibiotics thus far(I would

> like to keep it this way). Anyway the clinic we deal with is

> concerned she may be harbouring a bug because her weight gain has

> been slow, she hasn't lost any weight but her curve is under the

> fifth percentile(personally I think these growth charts that we

> compare our children to do not take into account exclusively

> breastfed babies, they are all based on formula fed babies) I say

> this because my daughter was exclusively breastfed until 18 months,

> and when I compare her to other children the same age who were

> exclusively breastfed she does not differ hardly at all.

> However, because the clinic feels she isn't growing normally? they

> want to put her on a round of Tobi and other antibiotics just in case

> she has a bug. I have denied a bronchoscopy because of the risk of

> getting PA after it, and as well I don't agree with exploratory

> procedures. Suffice to say, the clinic does not agree with my

> decisions and feels that the therapy we are conducting isn't enough.

> Eventhough blood tests come back indicating good overall health and

> her x-rays show no congestion in her lungs.

> It infuriates me that these doctors can't see past their studies and

> do not take into account individual characteristics. CF has upwards

> to a thousand different mutations then also consider modifier genes

> that can also affect the severity of the disease, how can these

> doctors feel so confident that these drugs are good for our children

> when they(drugs) haven't even been around long enough to properly

> understand the effects of long time and rountine use.

> I use a very natural and wholistic approach to my daughters treatment

> from chinese herbs, vitmain/mineral supplementation, to a very strict

> non-proceesed, raw diet. We don't have any acid reflux, sickness

> (viral), lung problems, developmental delays nothing, she is a very

> vibrant, smart and happy-go-lucky two year old who has CF. However,

> the clinic rolls their eyes when I explain she doesn't drink milk

> because there is too much phospherous in it which leachs calcium from

> her bones, so I make her almond milk instead which has a higher

> content and more absorable source of calcium and protein. " We're

> sorry but there isn't any conclusive evidence that proves this " , well

> then I must be getting my info from some sci-fi novel!

> Is there anybody else out there who is confronted with these same

> battles? Where you feel these traditional procedures and therapies

> are creating more problems than they are solving? Where having an

> educated, researched opinion of your own doesn't matter because you

> are not the doctor? I tell you sometimes I feel I am in a room full

> of car salesmen.

> I am very interested in hearing from anybody who has any opinion on

> antibiotic use, good and bad. We have to remember most doctors

> graduated with an average score.

>

>

>