Re: Battle Royal

[Guest guest]

Hi Shanna,

I am no doc, even don't play one on TV. I am just a (caring) dad and

wouldn't do that to my daughter. From your intro to the list I got it

that Triana has mostly (only) problems with the digestion and no lung

involvement so far. And she even is on Pulmozyme as a preventative

measure. Is that correct?

So what's the sense in beating a child every few hours? Unfortunately

there is no satisfying answer to the question, whether CPT is better

than anything else. I doubt it, based on the fact that countries,

that don't do CPT (at least not the beating part of it) see similar

or even higher (Denmark, Netherlands) live expectancies for their CF

patients.

What did we do as an alternative? We used a therapy ball

http://www.adaptivemall.com/therapyballs.html for Fiona, and did a

lot of postural drainage while we PLAYED with her.

And we turned our kingsize bed into a trampoline and encouraged Fiona

to hop as much and as high as she wanted to do. I am a great believer

in exercise as an alternative to boring CPT sessions.

I am aware that you are brandnew to CF and that you don't feel like

you can make decisions like that now. We did the recommended

vibrating CPT (where you gently shake the kid instead of beating her)

for three months until Fiona and we got tired of it and looked for

alternatives. We have never looked back to CPT after that. Next month

Fiona will start to learn autogenic drainage, so that she will be

independend from us as a pre-teen and can clear her lungs by herself

if that needs to be done.

Just my two cents. I haven't vented about clapping CPT for a long

time and hope you don't mind my different view.

Peace

Torsten

[Guest guest]

Hi Shanna,

I am no doc, even don't play one on TV. I am just a (caring) dad and

wouldn't do that to my daughter. From your intro to the list I got it

that Triana has mostly (only) problems with the digestion and no lung

involvement so far. And she even is on Pulmozyme as a preventative

measure. Is that correct?

So what's the sense in beating a child every few hours? Unfortunately

there is no satisfying answer to the question, whether CPT is better

than anything else. I doubt it, based on the fact that countries,

that don't do CPT (at least not the beating part of it) see similar

or even higher (Denmark, Netherlands) live expectancies for their CF

patients.

What did we do as an alternative? We used a therapy ball

http://www.adaptivemall.com/therapyballs.html for Fiona, and did a

lot of postural drainage while we PLAYED with her.

And we turned our kingsize bed into a trampoline and encouraged Fiona

to hop as much and as high as she wanted to do. I am a great believer

in exercise as an alternative to boring CPT sessions.

I am aware that you are brandnew to CF and that you don't feel like

you can make decisions like that now. We did the recommended

vibrating CPT (where you gently shake the kid instead of beating her)

for three months until Fiona and we got tired of it and looked for

alternatives. We have never looked back to CPT after that. Next month

Fiona will start to learn autogenic drainage, so that she will be

independend from us as a pre-teen and can clear her lungs by herself

if that needs to be done.

Just my two cents. I haven't vented about clapping CPT for a long

time and hope you don't mind my different view.

Peace

Torsten

[Guest guest]

Hi Shanna,

I am no doc, even don't play one on TV. I am just a (caring) dad and

wouldn't do that to my daughter. From your intro to the list I got it

that Triana has mostly (only) problems with the digestion and no lung

involvement so far. And she even is on Pulmozyme as a preventative

measure. Is that correct?

So what's the sense in beating a child every few hours? Unfortunately

there is no satisfying answer to the question, whether CPT is better

than anything else. I doubt it, based on the fact that countries,

that don't do CPT (at least not the beating part of it) see similar

or even higher (Denmark, Netherlands) live expectancies for their CF

patients.

What did we do as an alternative? We used a therapy ball

http://www.adaptivemall.com/therapyballs.html for Fiona, and did a

lot of postural drainage while we PLAYED with her.

And we turned our kingsize bed into a trampoline and encouraged Fiona

to hop as much and as high as she wanted to do. I am a great believer

in exercise as an alternative to boring CPT sessions.

I am aware that you are brandnew to CF and that you don't feel like

you can make decisions like that now. We did the recommended

vibrating CPT (where you gently shake the kid instead of beating her)

for three months until Fiona and we got tired of it and looked for

alternatives. We have never looked back to CPT after that. Next month

Fiona will start to learn autogenic drainage, so that she will be

independend from us as a pre-teen and can clear her lungs by herself

if that needs to be done.

Just my two cents. I haven't vented about clapping CPT for a long

time and hope you don't mind my different view.

Peace

Torsten

[Guest guest]

I can't even imagine what it would be like to do cpt on a child that

young. As I said, Josh was 5 when he was diagnosed. That was hard

enough. He hated to be singled out, to be the only one who had to

stop whatever he was doing and be pounded on.The first thing we did

was make everyone have some " down time " while Josh did his treatment.

That was he wasn't missing anything. If it helps any, it will get

easier. After a while it will just be a part of your life, sure she

will still fuss. But she will also learn that it will do no good and

fuss less and less.

We now have the alternative to the pounding. Josh does the vest

treatments. It helps to be able to be upright. We would let him play

the video game while he does it. In the hospital he will sit up work

on a puzzle with me. Do you have this option?

Other than that, we just have to live with it. It's never been an

option for Josh not to have a treatment. Now that he's old enough to

take a little responsibility for himself, I can tell by his coughing

when he is not doing it right. I go take inventory of his med's and

sure enough, he's been skipping some. Just recently he has been on

Aubuterol 3x daily, pulmozyme 2x, and tobi 2x. That makes for a lot

of down time. Even at 14 he still fudges. I guess what it boils down

to is, It sux to be mom!! I hope it get's easier for you. Until then

do whatever works for you.

[Guest guest]

I can't even imagine what it would be like to do cpt on a child that

young. As I said, Josh was 5 when he was diagnosed. That was hard

enough. He hated to be singled out, to be the only one who had to

stop whatever he was doing and be pounded on.The first thing we did

was make everyone have some " down time " while Josh did his treatment.

That was he wasn't missing anything. If it helps any, it will get

easier. After a while it will just be a part of your life, sure she

will still fuss. But she will also learn that it will do no good and

fuss less and less.

We now have the alternative to the pounding. Josh does the vest

treatments. It helps to be able to be upright. We would let him play

the video game while he does it. In the hospital he will sit up work

on a puzzle with me. Do you have this option?

Other than that, we just have to live with it. It's never been an

option for Josh not to have a treatment. Now that he's old enough to

take a little responsibility for himself, I can tell by his coughing

when he is not doing it right. I go take inventory of his med's and

sure enough, he's been skipping some. Just recently he has been on

Aubuterol 3x daily, pulmozyme 2x, and tobi 2x. That makes for a lot

of down time. Even at 14 he still fudges. I guess what it boils down

to is, It sux to be mom!! I hope it get's easier for you. Until then

do whatever works for you.

[Guest guest]

I can't even imagine what it would be like to do cpt on a child that

young. As I said, Josh was 5 when he was diagnosed. That was hard

enough. He hated to be singled out, to be the only one who had to

stop whatever he was doing and be pounded on.The first thing we did

was make everyone have some " down time " while Josh did his treatment.

That was he wasn't missing anything. If it helps any, it will get

easier. After a while it will just be a part of your life, sure she

will still fuss. But she will also learn that it will do no good and

fuss less and less.

We now have the alternative to the pounding. Josh does the vest

treatments. It helps to be able to be upright. We would let him play

the video game while he does it. In the hospital he will sit up work

on a puzzle with me. Do you have this option?

Other than that, we just have to live with it. It's never been an

option for Josh not to have a treatment. Now that he's old enough to

take a little responsibility for himself, I can tell by his coughing

when he is not doing it right. I go take inventory of his med's and

sure enough, he's been skipping some. Just recently he has been on

Aubuterol 3x daily, pulmozyme 2x, and tobi 2x. That makes for a lot

of down time. Even at 14 he still fudges. I guess what it boils down

to is, It sux to be mom!! I hope it get's easier for you. Until then

do whatever works for you.

[Guest guest]

In a message dated 11/15/2002 7:02:57 AM Central Standard Time,

chaosangel@... writes:

> Shanna

I know how hard that is to do therapy. My youngest was almost two when she

was diagnosed. They just don't understand that we are doing it to keep them

healthy. Before we got the vest I would just sneak therapy in like I would

act like we were playing and a couple of up and down on my legs then I would

use my hand on her chest a few times until she got tired of playing that.

Sometimes I would get what I could get in because it was really hard. I love

the vest it has made that stress in our live much easier. Deb A

[Guest guest]

In a message dated 11/15/2002 7:02:57 AM Central Standard Time,

chaosangel@... writes:

> Shanna

I know how hard that is to do therapy. My youngest was almost two when she

was diagnosed. They just don't understand that we are doing it to keep them

healthy. Before we got the vest I would just sneak therapy in like I would

act like we were playing and a couple of up and down on my legs then I would

use my hand on her chest a few times until she got tired of playing that.

Sometimes I would get what I could get in because it was really hard. I love

the vest it has made that stress in our live much easier. Deb A

[Guest guest]

In a message dated 11/15/2002 7:02:57 AM Central Standard Time,

chaosangel@... writes:

> Shanna

I know how hard that is to do therapy. My youngest was almost two when she

was diagnosed. They just don't understand that we are doing it to keep them

healthy. Before we got the vest I would just sneak therapy in like I would

act like we were playing and a couple of up and down on my legs then I would

use my hand on her chest a few times until she got tired of playing that.

Sometimes I would get what I could get in because it was really hard. I love

the vest it has made that stress in our live much easier. Deb A

[Guest guest]

My daughter is two as well. She was diagnosed at birth thru testing and

is therefore pretty used to therapy but hey she's two, that's the age

when they challenge everything and suddenly want to do everything

themselves (even when they can't). We were having really bad problems a

few weeks back. I also noticed at the same time that when I put her down

for her nap, she would fuss and fuss and fuss. I finally decided to try

taking away the nap and now she falls asleep during the neb and usually

stays asleep during the therapy as well. We put a pillow on our lap to

do it. She is not coughing anything up yet so it's not a big deal. In

the morning, I start while she is still asleep. I pick her up, hold her

while I sit in a chair (a nursing chair), strap on the neb and most times

she never wakes up. If she does, we keep a tv in her room and we put on

whatever pbs show is on (usually sesame street). There are times when

she stays awake during the whole therapy. This usually happens on clinic

days when she falls asleep in the car and is therefore not tired. On

those nights, we will read to her while doing the neb and my husband lets

her watch cartoons (usually the powder puff girls of all things) during

therapy. Depending on how close to three she is, you may be able to talk

to her and find out what she wants to watch. We also have tried the

approach of using the tv as a reward if she behaves. If she acts up, we

turn it off and try and do therapy as best we can. Therefore, rewarding

the positive and not rewarding the negative. We got this approach from

her feeding therapy at CHOP. Anyway, this is what works for us. Good

luck. As a mother of a four year old and one who is currently two, I

know two can be a real tough age. I've gotten losts of bruises from Emma

kicking recently, Isabelle was the same way at that age. You can't get

them to do anything at that age without them running away or putting up a

fight. They crave independence.

- mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

My daughter is two as well. She was diagnosed at birth thru testing and

is therefore pretty used to therapy but hey she's two, that's the age

when they challenge everything and suddenly want to do everything

themselves (even when they can't). We were having really bad problems a

few weeks back. I also noticed at the same time that when I put her down

for her nap, she would fuss and fuss and fuss. I finally decided to try

taking away the nap and now she falls asleep during the neb and usually

stays asleep during the therapy as well. We put a pillow on our lap to

do it. She is not coughing anything up yet so it's not a big deal. In

the morning, I start while she is still asleep. I pick her up, hold her

while I sit in a chair (a nursing chair), strap on the neb and most times

she never wakes up. If she does, we keep a tv in her room and we put on

whatever pbs show is on (usually sesame street). There are times when

she stays awake during the whole therapy. This usually happens on clinic

days when she falls asleep in the car and is therefore not tired. On

those nights, we will read to her while doing the neb and my husband lets

her watch cartoons (usually the powder puff girls of all things) during

therapy. Depending on how close to three she is, you may be able to talk

to her and find out what she wants to watch. We also have tried the

approach of using the tv as a reward if she behaves. If she acts up, we

turn it off and try and do therapy as best we can. Therefore, rewarding

the positive and not rewarding the negative. We got this approach from

her feeding therapy at CHOP. Anyway, this is what works for us. Good

luck. As a mother of a four year old and one who is currently two, I

know two can be a real tough age. I've gotten losts of bruises from Emma

kicking recently, Isabelle was the same way at that age. You can't get

them to do anything at that age without them running away or putting up a

fight. They crave independence.

- mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

My daughter is two as well. She was diagnosed at birth thru testing and

is therefore pretty used to therapy but hey she's two, that's the age

when they challenge everything and suddenly want to do everything

themselves (even when they can't). We were having really bad problems a

few weeks back. I also noticed at the same time that when I put her down

for her nap, she would fuss and fuss and fuss. I finally decided to try

taking away the nap and now she falls asleep during the neb and usually

stays asleep during the therapy as well. We put a pillow on our lap to

do it. She is not coughing anything up yet so it's not a big deal. In

the morning, I start while she is still asleep. I pick her up, hold her

while I sit in a chair (a nursing chair), strap on the neb and most times

she never wakes up. If she does, we keep a tv in her room and we put on

whatever pbs show is on (usually sesame street). There are times when

she stays awake during the whole therapy. This usually happens on clinic

days when she falls asleep in the car and is therefore not tired. On

those nights, we will read to her while doing the neb and my husband lets

her watch cartoons (usually the powder puff girls of all things) during

therapy. Depending on how close to three she is, you may be able to talk

to her and find out what she wants to watch. We also have tried the

approach of using the tv as a reward if she behaves. If she acts up, we

turn it off and try and do therapy as best we can. Therefore, rewarding

the positive and not rewarding the negative. We got this approach from

her feeding therapy at CHOP. Anyway, this is what works for us. Good

luck. As a mother of a four year old and one who is currently two, I

know two can be a real tough age. I've gotten losts of bruises from Emma

kicking recently, Isabelle was the same way at that age. You can't get

them to do anything at that age without them running away or putting up a

fight. They crave independence.

- mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

I may try that, as well. The neb really isn't an issue. She has no problem

holding it and doing whatever she wants. In fact, I walked in the other day,

and she was keeping it on with her elbow while she used both hands to put a toy

together. (We don't use the strap because she fights it...but she'll hold the

neb up to her face properly if we just hand it to her.)

I really wish she had been diagnosed at birth. Then maybe she'd be used to it

now (and so would we for that matter.) Although, in some ways I'm glad we had

some time there where we had no idea there was anything wrong, and she was just

a wonderful little " normal " bundle of joy...and not so joy on occasion, as all

kids will be. I'll be glad when she gets back around to bundle of joy, rather

than kick-mommy-in-the-teeth-while-she-isn't-looking.

Sorry I'm so darned negative. I've started taking my anti-depressants again

(every day, like I'm actually supposed to) but it takes like 2 weeks for them to

build up the system, so I'm still kinda down about everything. I should

eventually start perking back up, and get to where I'm not totally negative all

the time, it's just kinda hard for me to remember to talk about the good stuff,

too. (Like the fact that she's pigging out on supper...and that my poor husband

is doing just as much of her therapy and stuff as I am...and the fact that we

finally have heat in the house again...and other stuff, too.)

Shanna

mom of Triana, age 2 wcf

Re: Battle Royal

My daughter is two as well. She was diagnosed at birth thru testing and

is therefore pretty used to therapy but hey she's two, that's the age

when they challenge everything and suddenly want to do everything

themselves (even when they can't). We were having really bad problems a

few weeks back. I also noticed at the same time that when I put her down

for her nap, she would fuss and fuss and fuss. I finally decided to try

taking away the nap and now she falls asleep during the neb and usually

stays asleep during the therapy as well. We put a pillow on our lap to

do it. She is not coughing anything up yet so it's not a big deal. In

the morning, I start while she is still asleep. I pick her up, hold her

while I sit in a chair (a nursing chair), strap on the neb and most times

she never wakes up. If she does, we keep a tv in her room and we put on

whatever pbs show is on (usually sesame street). There are times when

she stays awake during the whole therapy. This usually happens on clinic

days when she falls asleep in the car and is therefore not tired. On

those nights, we will read to her while doing the neb and my husband lets

her watch cartoons (usually the powder puff girls of all things) during

therapy. Depending on how close to three she is, you may be able to talk

to her and find out what she wants to watch. We also have tried the

approach of using the tv as a reward if she behaves. If she acts up, we

turn it off and try and do therapy as best we can. Therefore, rewarding

the positive and not rewarding the negative. We got this approach from

her feeding therapy at CHOP. Anyway, this is what works for us. Good

luck. As a mother of a four year old and one who is currently two, I

know two can be a real tough age. I've gotten losts of bruises from Emma

kicking recently, Isabelle was the same way at that age. You can't get

them to do anything at that age without them running away or putting up a

fight. They crave independence.

- mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

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.

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

[Guest guest]

I may try that, as well. The neb really isn't an issue. She has no problem

holding it and doing whatever she wants. In fact, I walked in the other day,

and she was keeping it on with her elbow while she used both hands to put a toy

together. (We don't use the strap because she fights it...but she'll hold the

neb up to her face properly if we just hand it to her.)

I really wish she had been diagnosed at birth. Then maybe she'd be used to it

now (and so would we for that matter.) Although, in some ways I'm glad we had

some time there where we had no idea there was anything wrong, and she was just

a wonderful little " normal " bundle of joy...and not so joy on occasion, as all

kids will be. I'll be glad when she gets back around to bundle of joy, rather

than kick-mommy-in-the-teeth-while-she-isn't-looking.

Sorry I'm so darned negative. I've started taking my anti-depressants again

(every day, like I'm actually supposed to) but it takes like 2 weeks for them to

build up the system, so I'm still kinda down about everything. I should

eventually start perking back up, and get to where I'm not totally negative all

the time, it's just kinda hard for me to remember to talk about the good stuff,

too. (Like the fact that she's pigging out on supper...and that my poor husband

is doing just as much of her therapy and stuff as I am...and the fact that we

finally have heat in the house again...and other stuff, too.)

Shanna

mom of Triana, age 2 wcf

Re: Battle Royal

My daughter is two as well. She was diagnosed at birth thru testing and

is therefore pretty used to therapy but hey she's two, that's the age

when they challenge everything and suddenly want to do everything

themselves (even when they can't). We were having really bad problems a

few weeks back. I also noticed at the same time that when I put her down

for her nap, she would fuss and fuss and fuss. I finally decided to try

taking away the nap and now she falls asleep during the neb and usually

stays asleep during the therapy as well. We put a pillow on our lap to

do it. She is not coughing anything up yet so it's not a big deal. In

the morning, I start while she is still asleep. I pick her up, hold her

while I sit in a chair (a nursing chair), strap on the neb and most times

she never wakes up. If she does, we keep a tv in her room and we put on

whatever pbs show is on (usually sesame street). There are times when

she stays awake during the whole therapy. This usually happens on clinic

days when she falls asleep in the car and is therefore not tired. On

those nights, we will read to her while doing the neb and my husband lets

her watch cartoons (usually the powder puff girls of all things) during

therapy. Depending on how close to three she is, you may be able to talk

to her and find out what she wants to watch. We also have tried the

approach of using the tv as a reward if she behaves. If she acts up, we

turn it off and try and do therapy as best we can. Therefore, rewarding

the positive and not rewarding the negative. We got this approach from

her feeding therapy at CHOP. Anyway, this is what works for us. Good

luck. As a mother of a four year old and one who is currently two, I

know two can be a real tough age. I've gotten losts of bruises from Emma

kicking recently, Isabelle was the same way at that age. You can't get

them to do anything at that age without them running away or putting up a

fight. They crave independence.

- mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

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.

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

[Guest guest]

Shanna,

What a nightmare for you. Toddlers are just so darn cute, I simply

can't imagine having a battle resulting in a shower-soaking. That must

break your heart. If I had to go through this every night, I'd end up

locking myself in a closet to cry my heart out.

I think Torsten's post was very eloquent and quite a reality check

for you. I've read everyone's posts -- both for stopping the therapy

and continuing the therapy to teach her that lung clearance is a part

of CF. I hope you don't mind one more opinion. But I'm drawing on my

experience both as a parent and as a teacher.

Nov. 18 marks the 19th anniversary of my son's diagnosis with CF. He

was 4.4 years old at the time. I've often wondered why or how he so

willingly compiled with all the new things that were suddenly foisted

upon his life -- enzymes and CPT. I'm still amazed, and very grateful

that we never, ever went through a rebellious stage--not even as a

teen. I'm sure those parents that battle meds and treatments don't

want to hear this. Believe me I know how lucky we are.

His sister had just celebrated her first birthday two weeks before his

diagnosis; many times we chuckled that if anyone had to have CF, then

God knew what he was doing because would have been a hellion.

(And she agrees because she has trouble even swallowing an ibuprofen

tablet!) But as a stalwart, caring sibling without rivalry, a brother

couldn't have had a better companion. Again, we know we are fortunate.

So, because we had it " so easy, " maybe people are thinking I can't

imagine how difficult this is for you, your husband, and your precious

baby girl. But I can imagine... very easily.

Severly years ago I taught in a seriously emotionally disturbed grade

school classroom. There were three of us teachers with just nine

students, and we needed all three of us teachers!) Every day, one of

the students either hit, screamed, kicked, bit, pinched, punched,

spit, cursed or threw papers (or chairs!) at us or the other students.

But like you, we held tight, remained firm but very loving, because

the students had to learn that we meant it when we said actions have

consequences.

What broke my heart is that all but one of these kids came from

backgrounds of abuse, either sexual or physical. A judge overseeing

the case of one of my students said it was the worst case of torture

he'd seen in the county in eight years. I still think about her and

wonder if she still has an hysterical fear of bugs...

There's no way I can put myself in your shoes, I can only imagine how

hard it must have been when your struggle ends in putting a screaming

two-year old under a cold shower.

My daughter was very strong-willed and I think back to the time-outs

in the corner, the time spent in her room without television when

she was naughty -- but had she been the one with CF and if any

struggle had resorted into hysterical crying over a CPT session, I

think I would have to call the time-out on myself. By the time someone

is screaming, fighting and crying that hard 1) they've already gotten

a pretty darn good cardio-pulmonary workout, and 2) chances are the

psyche and spirit of the toddler are being harmed more than the lungs.

Again, I know there are people out there who for whatever reasons

won't appreciate my opinion or perhaps they believe I don't have a

grasp on " the reality " of teaching kids that CPT is not an option.

Again, I know that I'm fortunate that I never had to struggle with my

son. I did his CPT every night before bed. I didn't do a morning

session unless he was productive. And if he was over-productive then

I'd increase sessions accordingly. We did followed this routine until

he was in junior high school, then the Flutter became available and he

started using it.

But I missed the CPT sessions because that was such a great

mother-child bonding time. It was nice having that one-on-one time

with each of my kids. I'd do 's CPT, and while I was clapping his

back he'd read Sports Illustrated (even when he was on his stomach in

the face down position). He taught me about baseball and ice hockey,

the names of players and what all those confusing stats mean. We'd

talk about his day and I'd learn interesting things about teachers and

friends And then when I was finished, I'd go curl up in bed with my

daughter because it was only fair that she get equal mommy time. We'd

cuddle and she'd talk about her day.

CF is hell. The medications are hell. The therapies are hell. The

cost of the disease is hell. The emotional toll is hell. But the

reality is that CF is here in our lives. And if it has to be here in

our lives then what I hope for all of you is the best, most loving,

connected experience with your children that you can have -- despite

CF.

So clearly something has to change. Even if this is only a " terrible

two's " phase, I'm concerned that there will be longterm harm if

battles go on like this every night. You run the risk of breaking your

daughter's spirit -- like breaking a wild horse.

Have you seen the movie The Horse Whisperer? There is a good lesson

there for all of us.

Again, I think Torsten's post said it best. There are many ways to

do CPT. When was about 6, we bought a mini-trampoline so he

could jump on it whenever he felt like. The nice thing was that his

sister and friends could use it too -- this made it seem more like a

fun toy, not therapy. didn't feel so excluded. We've also bought

those bouncy balls -- you know, the one with a handle and you sit on

it and bounce around the house. That's great for jiggling loose mucus

-- and again, friends and siblings can use it so it's like a toy, not

a therapy device. (In Sweden, jumping on a trampoline IS part of the

CF patients regimen while in hospital!)

When was in kindergarten he played soccer and the next year

moved on to baseball, and played baseball and basketball for years

(still does!). The goal is to teach all children lifelong good habits,

and it starts young but more importantly it starts by example -- if

you want your kids to exercise, they must see you walking the talk.

One more thing. I don't know if you've considered that for some kids

therapy just plain hurts. The pats to the back can sting even with

cupped hands! I've had my son do CPT on my back so I would know what

it felt like. If you're wearing only one layer -- say a shirt or

pajama top or nightgown -- then it hurts like hell!

Right after 's diagnosis, my mom (a former RN) bought him a bunch

of cute sweatshirts with soft, plush linings. This helped pad him. But

if he wasn't wearing one of those sweatshirts then CPT was downright

uncomfortable. So I always used his blanky -- he liked sleeping with

one of those cotton receiving blankets from his baby days -- and I'd

fold it in half and put it over his back, or sides, or chest to pad

the area before clapping. It helped save his skin and my hands! I

don't know about your kids, but after therapy, 's skin would

look red (he has very fair skin -- guess it goes with the red hair and

green eyes!).

I also learned that I had to do warm ups to CPT, otherwise 's

asthma might kick in -- a hairtrigger reaction to the sudden vigorous

clapping. I'd start off my massaging the area, a gentle rythmic motion

while we chatted... then with cupped hands I'd begin clapping lightly

and slowly... then take up the tempo, clapping harder and faster. I'd

always try to finish with a back massage to relax him again.

I hope some of this helps and I hope no one is offended or thinks I

don't understand the difficulties some of you face every day. I don't

know if I just did some things right or got lucky with two really

great kids. I just know for our situation I followed instinct and

treated my kids how I would want to be treated.

Kim

Mom to (23 with CF and asthma) and (20 asthma, no CF)

Gods, last night sucked. Triana still doesn't like therapy, and we

usually have to hold her down to get it done because no amount of

distraction works more than once, and it won't work once we get to the

positional stuff. Last night was really bad. She was fighting us

really hard (she can kick really hard, too) screaming and crying.

After about half an hour of coaxing, and bribing, and repeated

attempts to make her stay on her side (pick up kid, lay on side, she

screams and sits right back up - repeat) she started getting all stiff

on us, she was so mad. I had to pick her up and put her in the shower

with the cold water running to finally shock her out of that. She had

gotten so upset that she hyperventilated. We left her in there for

about a full minute, then took her out and got the towel around her.

She and I sat and rocked for about the next half hour until she

finally stopped gulping and crying. Then she and I had a discussion

about therapy. She didn't want to do the rest of it. ( " I don't want

ter-a-py anymore! I want Daddy! " ) I would tell her we had to do it,

no choice, and Daddy was the one who was going to be doing the

therapy, and couldn't come back unless we did it, and she'd start

crying again. So I'd calm her down, and we'd start the discussion

again. I finally started asking her where she wanted to do it...on

Mommy's bed, in the living room, on her bed, in the computer room.

She didn't want to do it at all. After a while, she finally said

" Want do ter-a-py in my bed. " So we moved on to her room, got her

nightgown on her, and Daddy got to come back. After that, she was

pretty good about getting into the positions we wanted her in. We

could just ask her to please lay on her side, or please turn over, and

she would. But oh, that was awful.

Never thought my experiences as a kid would come in handy. When I

was in the 9-14 range, I had what my mother would call fits, and what

I would call rages, every time I got spanked. I would actually get so

upset that I'd blank out from it, and not know exactly what I was

doing (generally screaming, biting, clawing, running, etc.) I

generally woke up fully clothed in the shower with cold water hitting

me because it was the only way my mom could shock me out of it. It

gave my mind something physically shocking to grasp onto, rather than

the totally mindless anger and rage that was driving me. I **never**

thought that that would actually be a useful experience.

Well, gotta go. Daddy just started therapy for this morning. She's

not happy about it, again.

Shanna

mom of Triana, age 2 wcf

[Guest guest]

Shanna,

What a nightmare for you. Toddlers are just so darn cute, I simply

can't imagine having a battle resulting in a shower-soaking. That must

break your heart. If I had to go through this every night, I'd end up

locking myself in a closet to cry my heart out.

I think Torsten's post was very eloquent and quite a reality check

for you. I've read everyone's posts -- both for stopping the therapy

and continuing the therapy to teach her that lung clearance is a part

of CF. I hope you don't mind one more opinion. But I'm drawing on my

experience both as a parent and as a teacher.

Nov. 18 marks the 19th anniversary of my son's diagnosis with CF. He

was 4.4 years old at the time. I've often wondered why or how he so

willingly compiled with all the new things that were suddenly foisted

upon his life -- enzymes and CPT. I'm still amazed, and very grateful

that we never, ever went through a rebellious stage--not even as a

teen. I'm sure those parents that battle meds and treatments don't

want to hear this. Believe me I know how lucky we are.

His sister had just celebrated her first birthday two weeks before his

diagnosis; many times we chuckled that if anyone had to have CF, then

God knew what he was doing because would have been a hellion.

(And she agrees because she has trouble even swallowing an ibuprofen

tablet!) But as a stalwart, caring sibling without rivalry, a brother

couldn't have had a better companion. Again, we know we are fortunate.

So, because we had it " so easy, " maybe people are thinking I can't

imagine how difficult this is for you, your husband, and your precious

baby girl. But I can imagine... very easily.

Severly years ago I taught in a seriously emotionally disturbed grade

school classroom. There were three of us teachers with just nine

students, and we needed all three of us teachers!) Every day, one of

the students either hit, screamed, kicked, bit, pinched, punched,

spit, cursed or threw papers (or chairs!) at us or the other students.

But like you, we held tight, remained firm but very loving, because

the students had to learn that we meant it when we said actions have

consequences.

What broke my heart is that all but one of these kids came from

backgrounds of abuse, either sexual or physical. A judge overseeing

the case of one of my students said it was the worst case of torture

he'd seen in the county in eight years. I still think about her and

wonder if she still has an hysterical fear of bugs...

There's no way I can put myself in your shoes, I can only imagine how

hard it must have been when your struggle ends in putting a screaming

two-year old under a cold shower.

My daughter was very strong-willed and I think back to the time-outs

in the corner, the time spent in her room without television when

she was naughty -- but had she been the one with CF and if any

struggle had resorted into hysterical crying over a CPT session, I

think I would have to call the time-out on myself. By the time someone

is screaming, fighting and crying that hard 1) they've already gotten

a pretty darn good cardio-pulmonary workout, and 2) chances are the

psyche and spirit of the toddler are being harmed more than the lungs.

Again, I know there are people out there who for whatever reasons

won't appreciate my opinion or perhaps they believe I don't have a

grasp on " the reality " of teaching kids that CPT is not an option.

Again, I know that I'm fortunate that I never had to struggle with my

son. I did his CPT every night before bed. I didn't do a morning

session unless he was productive. And if he was over-productive then

I'd increase sessions accordingly. We did followed this routine until

he was in junior high school, then the Flutter became available and he

started using it.

But I missed the CPT sessions because that was such a great

mother-child bonding time. It was nice having that one-on-one time

with each of my kids. I'd do 's CPT, and while I was clapping his

back he'd read Sports Illustrated (even when he was on his stomach in

the face down position). He taught me about baseball and ice hockey,

the names of players and what all those confusing stats mean. We'd

talk about his day and I'd learn interesting things about teachers and

friends And then when I was finished, I'd go curl up in bed with my

daughter because it was only fair that she get equal mommy time. We'd

cuddle and she'd talk about her day.

CF is hell. The medications are hell. The therapies are hell. The

cost of the disease is hell. The emotional toll is hell. But the

reality is that CF is here in our lives. And if it has to be here in

our lives then what I hope for all of you is the best, most loving,

connected experience with your children that you can have -- despite

CF.

So clearly something has to change. Even if this is only a " terrible

two's " phase, I'm concerned that there will be longterm harm if

battles go on like this every night. You run the risk of breaking your

daughter's spirit -- like breaking a wild horse.

Have you seen the movie The Horse Whisperer? There is a good lesson

there for all of us.

Again, I think Torsten's post said it best. There are many ways to

do CPT. When was about 6, we bought a mini-trampoline so he

could jump on it whenever he felt like. The nice thing was that his

sister and friends could use it too -- this made it seem more like a

fun toy, not therapy. didn't feel so excluded. We've also bought

those bouncy balls -- you know, the one with a handle and you sit on

it and bounce around the house. That's great for jiggling loose mucus

-- and again, friends and siblings can use it so it's like a toy, not

a therapy device. (In Sweden, jumping on a trampoline IS part of the

CF patients regimen while in hospital!)

When was in kindergarten he played soccer and the next year

moved on to baseball, and played baseball and basketball for years

(still does!). The goal is to teach all children lifelong good habits,

and it starts young but more importantly it starts by example -- if

you want your kids to exercise, they must see you walking the talk.

One more thing. I don't know if you've considered that for some kids

therapy just plain hurts. The pats to the back can sting even with

cupped hands! I've had my son do CPT on my back so I would know what

it felt like. If you're wearing only one layer -- say a shirt or

pajama top or nightgown -- then it hurts like hell!

Right after 's diagnosis, my mom (a former RN) bought him a bunch

of cute sweatshirts with soft, plush linings. This helped pad him. But

if he wasn't wearing one of those sweatshirts then CPT was downright

uncomfortable. So I always used his blanky -- he liked sleeping with

one of those cotton receiving blankets from his baby days -- and I'd

fold it in half and put it over his back, or sides, or chest to pad

the area before clapping. It helped save his skin and my hands! I

don't know about your kids, but after therapy, 's skin would

look red (he has very fair skin -- guess it goes with the red hair and

green eyes!).

I also learned that I had to do warm ups to CPT, otherwise 's

asthma might kick in -- a hairtrigger reaction to the sudden vigorous

clapping. I'd start off my massaging the area, a gentle rythmic motion

while we chatted... then with cupped hands I'd begin clapping lightly

and slowly... then take up the tempo, clapping harder and faster. I'd

always try to finish with a back massage to relax him again.

I hope some of this helps and I hope no one is offended or thinks I

don't understand the difficulties some of you face every day. I don't

know if I just did some things right or got lucky with two really

great kids. I just know for our situation I followed instinct and

treated my kids how I would want to be treated.

Kim

Mom to (23 with CF and asthma) and (20 asthma, no CF)

Gods, last night sucked. Triana still doesn't like therapy, and we

usually have to hold her down to get it done because no amount of

distraction works more than once, and it won't work once we get to the

positional stuff. Last night was really bad. She was fighting us

really hard (she can kick really hard, too) screaming and crying.

After about half an hour of coaxing, and bribing, and repeated

attempts to make her stay on her side (pick up kid, lay on side, she

screams and sits right back up - repeat) she started getting all stiff

on us, she was so mad. I had to pick her up and put her in the shower

with the cold water running to finally shock her out of that. She had

gotten so upset that she hyperventilated. We left her in there for

about a full minute, then took her out and got the towel around her.

She and I sat and rocked for about the next half hour until she

finally stopped gulping and crying. Then she and I had a discussion

about therapy. She didn't want to do the rest of it. ( " I don't want

ter-a-py anymore! I want Daddy! " ) I would tell her we had to do it,

no choice, and Daddy was the one who was going to be doing the

therapy, and couldn't come back unless we did it, and she'd start

crying again. So I'd calm her down, and we'd start the discussion

again. I finally started asking her where she wanted to do it...on

Mommy's bed, in the living room, on her bed, in the computer room.

She didn't want to do it at all. After a while, she finally said

" Want do ter-a-py in my bed. " So we moved on to her room, got her

nightgown on her, and Daddy got to come back. After that, she was

pretty good about getting into the positions we wanted her in. We

could just ask her to please lay on her side, or please turn over, and

she would. But oh, that was awful.

Never thought my experiences as a kid would come in handy. When I

was in the 9-14 range, I had what my mother would call fits, and what

I would call rages, every time I got spanked. I would actually get so

upset that I'd blank out from it, and not know exactly what I was

doing (generally screaming, biting, clawing, running, etc.) I

generally woke up fully clothed in the shower with cold water hitting

me because it was the only way my mom could shock me out of it. It

gave my mind something physically shocking to grasp onto, rather than

the totally mindless anger and rage that was driving me. I **never**

thought that that would actually be a useful experience.

Well, gotta go. Daddy just started therapy for this morning. She's

not happy about it, again.

Shanna

mom of Triana, age 2 wcf

[Guest guest]

In a message dated 11/16/2002 2:16:58 AM Eastern Standard Time,

chaosangel@... writes:

> I really wish she had been diagnosed at birth. Then maybe she'd be used to

> it now (and so would we for that matter.)

I think thats why I have such major problems with (12). She had 6

years of a " NORMAL " life.... was 4 and is more adaptable. All kids are

different...

Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined

the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for

this - TOBI after their medication!

[Guest guest]

YEA, YEAH!!! It sounds like it is already turning around.......The heat

being on is super , if your up north. Gosh, its getting cold up there. I'll

send you some of my sunshine & warmer temps. Now , we do get cold down here

some, usually when we are asleep in bed. That's good...:) Orlando, FL .

is where I live.....

Your wee one ill get into the GUESS IT HAS TO BE DONE MOON, soon enough .I

know your doing all you can, & surely want your teeth to stay pretty as

well. :):)

have a better week ahead , sounds like it is heading your way

LOVE & HUGS,

GrandmomBEV

Re: Battle Royal

I may try that, as well. The neb really isn't an issue. She has no problem

holding it and doing whatever she wants. In fact, I walked in the other

day, and she was keeping it on with her elbow while she used both hands to

put a toy together. (We don't use the strap because she fights it...but

she'll hold the neb up to her face properly if we just hand it to her.)

I really wish she had been diagnosed at birth. Then maybe she'd be used to

it now (and so would we for that matter.) Although, in some ways I'm glad

we had some time there where we had no idea there was anything wrong, and

she was just a wonderful little " normal " bundle of joy...and not so joy on

occasion, as all kids will be. I'll be glad when she gets back around to

bundle of joy, rather than kick-mommy-in-the-teeth-while-she-isn't-looking.

Sorry I'm so darned negative. I've started taking my anti-depressants again

(every day, like I'm actually supposed to) but it takes like 2 weeks for

them to build up the system, so I'm still kinda down about everything. I

should eventually start perking back up, and get to where I'm not totally

negative all the time, it's just kinda hard for me to remember to talk about

the good stuff, too. (Like the fact that she's pigging out on supper...and

that my poor husband is doing just as much of her therapy and stuff as I

am...and the fact that we finally have heat in the house again...and other

stuff, too.)

Shanna

mom of Triana, age 2 wcf

Re: Battle Royal

My daughter is two as well. She was diagnosed at birth thru testing and

is therefore pretty used to therapy but hey she's two, that's the age

when they challenge everything and suddenly want to do everything

themselves (even when they can't). We were having really bad problems a

few weeks back. I also noticed at the same time that when I put her down

for her nap, she would fuss and fuss and fuss. I finally decided to try

taking away the nap and now she falls asleep during the neb and usually

stays asleep during the therapy as well. We put a pillow on our lap to

do it. She is not coughing anything up yet so it's not a big deal. In

the morning, I start while she is still asleep. I pick her up, hold her

while I sit in a chair (a nursing chair), strap on the neb and most times

she never wakes up. If she does, we keep a tv in her room and we put on

whatever pbs show is on (usually sesame street). There are times when

she stays awake during the whole therapy. This usually happens on clinic

days when she falls asleep in the car and is therefore not tired. On

those nights, we will read to her while doing the neb and my husband lets

her watch cartoons (usually the powder puff girls of all things) during

therapy. Depending on how close to three she is, you may be able to talk

to her and find out what she wants to watch. We also have tried the

approach of using the tv as a reward if she behaves. If she acts up, we

turn it off and try and do therapy as best we can. Therefore, rewarding

the positive and not rewarding the negative. We got this approach from

her feeding therapy at CHOP. Anyway, this is what works for us. Good

luck. As a mother of a four year old and one who is currently two, I

know two can be a real tough age. I've gotten losts of bruises from Emma

kicking recently, Isabelle was the same way at that age. You can't get

them to do anything at that age without them running away or putting up a

fight. They crave independence.

- mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

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.

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

[Guest guest]

YEA, YEAH!!! It sounds like it is already turning around.......The heat

being on is super , if your up north. Gosh, its getting cold up there. I'll

send you some of my sunshine & warmer temps. Now , we do get cold down here

some, usually when we are asleep in bed. That's good...:) Orlando, FL .

is where I live.....

Your wee one ill get into the GUESS IT HAS TO BE DONE MOON, soon enough .I

know your doing all you can, & surely want your teeth to stay pretty as

well. :):)

have a better week ahead , sounds like it is heading your way

LOVE & HUGS,

GrandmomBEV

Re: Battle Royal

I may try that, as well. The neb really isn't an issue. She has no problem

holding it and doing whatever she wants. In fact, I walked in the other

day, and she was keeping it on with her elbow while she used both hands to

put a toy together. (We don't use the strap because she fights it...but

she'll hold the neb up to her face properly if we just hand it to her.)

I really wish she had been diagnosed at birth. Then maybe she'd be used to

it now (and so would we for that matter.) Although, in some ways I'm glad

we had some time there where we had no idea there was anything wrong, and

she was just a wonderful little " normal " bundle of joy...and not so joy on

occasion, as all kids will be. I'll be glad when she gets back around to

bundle of joy, rather than kick-mommy-in-the-teeth-while-she-isn't-looking.

Sorry I'm so darned negative. I've started taking my anti-depressants again

(every day, like I'm actually supposed to) but it takes like 2 weeks for

them to build up the system, so I'm still kinda down about everything. I

should eventually start perking back up, and get to where I'm not totally

negative all the time, it's just kinda hard for me to remember to talk about

the good stuff, too. (Like the fact that she's pigging out on supper...and

that my poor husband is doing just as much of her therapy and stuff as I

am...and the fact that we finally have heat in the house again...and other

stuff, too.)

Shanna

mom of Triana, age 2 wcf

Re: Battle Royal

My daughter is two as well. She was diagnosed at birth thru testing and

is therefore pretty used to therapy but hey she's two, that's the age

when they challenge everything and suddenly want to do everything

themselves (even when they can't). We were having really bad problems a

few weeks back. I also noticed at the same time that when I put her down

for her nap, she would fuss and fuss and fuss. I finally decided to try

taking away the nap and now she falls asleep during the neb and usually

stays asleep during the therapy as well. We put a pillow on our lap to

do it. She is not coughing anything up yet so it's not a big deal. In

the morning, I start while she is still asleep. I pick her up, hold her

while I sit in a chair (a nursing chair), strap on the neb and most times

she never wakes up. If she does, we keep a tv in her room and we put on

whatever pbs show is on (usually sesame street). There are times when

she stays awake during the whole therapy. This usually happens on clinic

days when she falls asleep in the car and is therefore not tired. On

those nights, we will read to her while doing the neb and my husband lets

her watch cartoons (usually the powder puff girls of all things) during

therapy. Depending on how close to three she is, you may be able to talk

to her and find out what she wants to watch. We also have tried the

approach of using the tv as a reward if she behaves. If she acts up, we

turn it off and try and do therapy as best we can. Therefore, rewarding

the positive and not rewarding the negative. We got this approach from

her feeding therapy at CHOP. Anyway, this is what works for us. Good

luck. As a mother of a four year old and one who is currently two, I

know two can be a real tough age. I've gotten losts of bruises from Emma

kicking recently, Isabelle was the same way at that age. You can't get

them to do anything at that age without them running away or putting up a

fight. They crave independence.

- mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

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.

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

[Guest guest]

YEA, YEAH!!! It sounds like it is already turning around.......The heat

being on is super , if your up north. Gosh, its getting cold up there. I'll

send you some of my sunshine & warmer temps. Now , we do get cold down here

some, usually when we are asleep in bed. That's good...:) Orlando, FL .

is where I live.....

Your wee one ill get into the GUESS IT HAS TO BE DONE MOON, soon enough .I

know your doing all you can, & surely want your teeth to stay pretty as

well. :):)

have a better week ahead , sounds like it is heading your way

LOVE & HUGS,

GrandmomBEV

Re: Battle Royal

I may try that, as well. The neb really isn't an issue. She has no problem

holding it and doing whatever she wants. In fact, I walked in the other

day, and she was keeping it on with her elbow while she used both hands to

put a toy together. (We don't use the strap because she fights it...but

she'll hold the neb up to her face properly if we just hand it to her.)

I really wish she had been diagnosed at birth. Then maybe she'd be used to

it now (and so would we for that matter.) Although, in some ways I'm glad

we had some time there where we had no idea there was anything wrong, and

she was just a wonderful little " normal " bundle of joy...and not so joy on

occasion, as all kids will be. I'll be glad when she gets back around to

bundle of joy, rather than kick-mommy-in-the-teeth-while-she-isn't-looking.

Sorry I'm so darned negative. I've started taking my anti-depressants again

(every day, like I'm actually supposed to) but it takes like 2 weeks for

them to build up the system, so I'm still kinda down about everything. I

should eventually start perking back up, and get to where I'm not totally

negative all the time, it's just kinda hard for me to remember to talk about

the good stuff, too. (Like the fact that she's pigging out on supper...and

that my poor husband is doing just as much of her therapy and stuff as I

am...and the fact that we finally have heat in the house again...and other

stuff, too.)

Shanna

mom of Triana, age 2 wcf

Re: Battle Royal

My daughter is two as well. She was diagnosed at birth thru testing and

is therefore pretty used to therapy but hey she's two, that's the age

when they challenge everything and suddenly want to do everything

themselves (even when they can't). We were having really bad problems a

few weeks back. I also noticed at the same time that when I put her down

for her nap, she would fuss and fuss and fuss. I finally decided to try

taking away the nap and now she falls asleep during the neb and usually

stays asleep during the therapy as well. We put a pillow on our lap to

do it. She is not coughing anything up yet so it's not a big deal. In

the morning, I start while she is still asleep. I pick her up, hold her

while I sit in a chair (a nursing chair), strap on the neb and most times

she never wakes up. If she does, we keep a tv in her room and we put on

whatever pbs show is on (usually sesame street). There are times when

she stays awake during the whole therapy. This usually happens on clinic

days when she falls asleep in the car and is therefore not tired. On

those nights, we will read to her while doing the neb and my husband lets

her watch cartoons (usually the powder puff girls of all things) during

therapy. Depending on how close to three she is, you may be able to talk

to her and find out what she wants to watch. We also have tried the

approach of using the tv as a reward if she behaves. If she acts up, we

turn it off and try and do therapy as best we can. Therefore, rewarding

the positive and not rewarding the negative. We got this approach from

her feeding therapy at CHOP. Anyway, this is what works for us. Good

luck. As a mother of a four year old and one who is currently two, I

know two can be a real tough age. I've gotten losts of bruises from Emma

kicking recently, Isabelle was the same way at that age. You can't get

them to do anything at that age without them running away or putting up a

fight. They crave independence.

- mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

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.

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

[Guest guest]

Shanna,

Wow, what a terrible experience for everyone involved. We do Abby's

treatments when she is asleep. The crib matress will be practically

bouncing and she has learned to sleep right through it. If she is

awake, she twists and turns and fights like mad. She does not like

to be held still for anything. It is getting very hard to change her

diaper or dress her. I'll be sweating, and she will still be only

half dressed. Oh well, the kid that will stand up to me now will

probably stand up to the bullies and drug pushers later. I admire

her strength and resiliance. But I know that we simply must do her

treatments. At night, after she falls asleep, she will sleep through

anything. However, during the day, when she is napping, she often

wakes up mid-treatment. In that case, we do what we can. We cant

keep her still to do two minutes in each position, so we do 30 sec

here, 30 sec there, back and forth. We crawl around after her and

hold her still for as long as we can. Then she slips away for a bit,

and we crawl after her and resume what we were doing, etc,etc. It

takes longer, but probably not any longer that what you are going

through. If she gets to upset, we switch methods. We hold her hands

and run her around and around in circles. She squeels with delight,

until she begins panting and coughing. She actually coughs better

this way than she ever does from the PD's. I know you are doing what

you are because you love your baby. Lord knows, it would be easier

to give up, but it must break your heart every time you have to fight

with her. Best of luck to you. CF sucks!

LOL, Toni, mom to Abby, 10mo. wcf

> Gods, last night sucked. Triana still doesn't like therapy, and we

usually have to hold her down to get it done because no amount of

distraction works more than once, and it won't work once we get to

the positional stuff. Last night was really bad. She was fighting

us really hard (she can kick really hard, too) screaming and crying.

After about half an hour of coaxing, and bribing, and repeated

attempts to make her stay on her side (pick up kid, lay on side, she

screams and sits right back up - repeat) she started getting all

stiff on us, she was so mad. I had to pick her up and put her in the

shower with the cold water running to finally shock her out of that.

She had gotten so upset that she hyperventilated. We left her in

there for about a full minute, then took her out and got the towel

around her. She and I sat and rocked for about the next half hour

until she finally stopped gulping and crying. Then she and I had a

discussion about therapy. She didn't want to do the rest of it. ( " I

don't want ter-a-py anymore! I want Daddy! " ) I would tell her we

had to do it, no choice, and Daddy was the one who was going to be

doing the therapy, and couldn't come back unless we did it, and she'd

start crying again. So I'd calm her down, and we'd start the

discussion again. I finally started asking her where she wanted to

do it...on Mommy's bed, in the living room, on her bed, in the

computer room. She didn't want to do it at all. After a while, she

finally said " Want do ter-a-py in my bed. " So we moved on to her

room, got her nightgown on her, and Daddy got to come back. After

that, she was pretty good about getting into the positions we wanted

her in. We could just ask her to please lay on her side, or please

turn over, and she would. But oh, that was awful.

>

> Never thought my experiences as a kid would come in handy. When I

was in the 9-14 range, I had what my mother would call fits, and what

I would call rages, every time I got spanked. I would actually get

so upset that I'd blank out from it, and not know exactly what I was

doing (generally screaming, biting, clawing, running, etc.) I

generally woke up fully clothed in the shower with cold water hitting

me because it was the only way my mom could shock me out of it. It

gave my mind something physically shocking to grasp onto, rather than

the totally mindless anger and rage that was driving me. I **never**

thought that that would actually be a useful experience.

>

> Well, gotta go. Daddy just started therapy for this morning.

She's not happy about it, again.

>

>

> Shanna

> mom of Triana, age 2 wcf

>

>

>

[Guest guest]

Shanna,

Wow, what a terrible experience for everyone involved. We do Abby's

treatments when she is asleep. The crib matress will be practically

bouncing and she has learned to sleep right through it. If she is

awake, she twists and turns and fights like mad. She does not like

to be held still for anything. It is getting very hard to change her

diaper or dress her. I'll be sweating, and she will still be only

half dressed. Oh well, the kid that will stand up to me now will

probably stand up to the bullies and drug pushers later. I admire

her strength and resiliance. But I know that we simply must do her

treatments. At night, after she falls asleep, she will sleep through

anything. However, during the day, when she is napping, she often

wakes up mid-treatment. In that case, we do what we can. We cant

keep her still to do two minutes in each position, so we do 30 sec

here, 30 sec there, back and forth. We crawl around after her and

hold her still for as long as we can. Then she slips away for a bit,

and we crawl after her and resume what we were doing, etc,etc. It

takes longer, but probably not any longer that what you are going

through. If she gets to upset, we switch methods. We hold her hands

and run her around and around in circles. She squeels with delight,

until she begins panting and coughing. She actually coughs better

this way than she ever does from the PD's. I know you are doing what

you are because you love your baby. Lord knows, it would be easier

to give up, but it must break your heart every time you have to fight

with her. Best of luck to you. CF sucks!

LOL, Toni, mom to Abby, 10mo. wcf

> Gods, last night sucked. Triana still doesn't like therapy, and we

usually have to hold her down to get it done because no amount of

distraction works more than once, and it won't work once we get to

the positional stuff. Last night was really bad. She was fighting

us really hard (she can kick really hard, too) screaming and crying.

After about half an hour of coaxing, and bribing, and repeated

attempts to make her stay on her side (pick up kid, lay on side, she

screams and sits right back up - repeat) she started getting all

stiff on us, she was so mad. I had to pick her up and put her in the

shower with the cold water running to finally shock her out of that.

She had gotten so upset that she hyperventilated. We left her in

there for about a full minute, then took her out and got the towel

around her. She and I sat and rocked for about the next half hour

until she finally stopped gulping and crying. Then she and I had a

discussion about therapy. She didn't want to do the rest of it. ( " I

don't want ter-a-py anymore! I want Daddy! " ) I would tell her we

had to do it, no choice, and Daddy was the one who was going to be

doing the therapy, and couldn't come back unless we did it, and she'd

start crying again. So I'd calm her down, and we'd start the

discussion again. I finally started asking her where she wanted to

do it...on Mommy's bed, in the living room, on her bed, in the

computer room. She didn't want to do it at all. After a while, she

finally said " Want do ter-a-py in my bed. " So we moved on to her

room, got her nightgown on her, and Daddy got to come back. After

that, she was pretty good about getting into the positions we wanted

her in. We could just ask her to please lay on her side, or please

turn over, and she would. But oh, that was awful.

>

> Never thought my experiences as a kid would come in handy. When I

was in the 9-14 range, I had what my mother would call fits, and what

I would call rages, every time I got spanked. I would actually get

so upset that I'd blank out from it, and not know exactly what I was

doing (generally screaming, biting, clawing, running, etc.) I

generally woke up fully clothed in the shower with cold water hitting

me because it was the only way my mom could shock me out of it. It

gave my mind something physically shocking to grasp onto, rather than

the totally mindless anger and rage that was driving me. I **never**

thought that that would actually be a useful experience.

>

> Well, gotta go. Daddy just started therapy for this morning.

She's not happy about it, again.

>

>

> Shanna

> mom of Triana, age 2 wcf

>

>

>

[Guest guest]

Shanna,

Wow, what a terrible experience for everyone involved. We do Abby's

treatments when she is asleep. The crib matress will be practically

bouncing and she has learned to sleep right through it. If she is

awake, she twists and turns and fights like mad. She does not like

to be held still for anything. It is getting very hard to change her

diaper or dress her. I'll be sweating, and she will still be only

half dressed. Oh well, the kid that will stand up to me now will

probably stand up to the bullies and drug pushers later. I admire

her strength and resiliance. But I know that we simply must do her

treatments. At night, after she falls asleep, she will sleep through

anything. However, during the day, when she is napping, she often

wakes up mid-treatment. In that case, we do what we can. We cant

keep her still to do two minutes in each position, so we do 30 sec

here, 30 sec there, back and forth. We crawl around after her and

hold her still for as long as we can. Then she slips away for a bit,

and we crawl after her and resume what we were doing, etc,etc. It

takes longer, but probably not any longer that what you are going

through. If she gets to upset, we switch methods. We hold her hands

and run her around and around in circles. She squeels with delight,

until she begins panting and coughing. She actually coughs better

this way than she ever does from the PD's. I know you are doing what

you are because you love your baby. Lord knows, it would be easier

to give up, but it must break your heart every time you have to fight

with her. Best of luck to you. CF sucks!

LOL, Toni, mom to Abby, 10mo. wcf

> Gods, last night sucked. Triana still doesn't like therapy, and we

usually have to hold her down to get it done because no amount of

distraction works more than once, and it won't work once we get to

the positional stuff. Last night was really bad. She was fighting

us really hard (she can kick really hard, too) screaming and crying.

After about half an hour of coaxing, and bribing, and repeated

attempts to make her stay on her side (pick up kid, lay on side, she

screams and sits right back up - repeat) she started getting all

stiff on us, she was so mad. I had to pick her up and put her in the

shower with the cold water running to finally shock her out of that.

She had gotten so upset that she hyperventilated. We left her in

there for about a full minute, then took her out and got the towel

around her. She and I sat and rocked for about the next half hour

until she finally stopped gulping and crying. Then she and I had a

discussion about therapy. She didn't want to do the rest of it. ( " I

don't want ter-a-py anymore! I want Daddy! " ) I would tell her we

had to do it, no choice, and Daddy was the one who was going to be

doing the therapy, and couldn't come back unless we did it, and she'd

start crying again. So I'd calm her down, and we'd start the

discussion again. I finally started asking her where she wanted to

do it...on Mommy's bed, in the living room, on her bed, in the

computer room. She didn't want to do it at all. After a while, she

finally said " Want do ter-a-py in my bed. " So we moved on to her

room, got her nightgown on her, and Daddy got to come back. After

that, she was pretty good about getting into the positions we wanted

her in. We could just ask her to please lay on her side, or please

turn over, and she would. But oh, that was awful.

>

> Never thought my experiences as a kid would come in handy. When I

was in the 9-14 range, I had what my mother would call fits, and what

I would call rages, every time I got spanked. I would actually get

so upset that I'd blank out from it, and not know exactly what I was

doing (generally screaming, biting, clawing, running, etc.) I

generally woke up fully clothed in the shower with cold water hitting

me because it was the only way my mom could shock me out of it. It

gave my mind something physically shocking to grasp onto, rather than

the totally mindless anger and rage that was driving me. I **never**

thought that that would actually be a useful experience.

>

> Well, gotta go. Daddy just started therapy for this morning.

She's not happy about it, again.

>

>

> Shanna

> mom of Triana, age 2 wcf

>

>

>

[Guest guest]

If CPT was pointless the the doctors would not have us doing it 2 to

3 times daily. There are many varying degrees of illness in CF. Where

we have all dealt with it, and all have opinions, your doctor knows

best. If you have concerns by all means ask you doctor for

alternatives. But dont expect what works for someone else to always

work for you. Just think, if you feel guilty doing what is required

to keep her healthy, how would you feel if you stopped and her lungs

were damaged. I was told with each infection brings scarring. These

areas dont become " un-scarred " . So these areas become useless.

Where I am sure all of the advice is well ment, on every CF group

they advise not changing or stopping any form of treatment without

asking your doctor. So until you get a chance to see the doctor and

address your concerns, hang in there.

Last night as my 18 mo. old attempted to kick out my teeth for daring

to take her out of the tub before she was ready, I thought of you. I

wondered how the evening had gone for you. I checked out your little

angel in the photo album a few days ago, she is so precious! Who

would of thought she is so spunky!!

I hope the doc has some answers for you. Until then, remember you are

doing it because you love her...all will be well.

[Guest guest]

If CPT was pointless the the doctors would not have us doing it 2 to

3 times daily. There are many varying degrees of illness in CF. Where

we have all dealt with it, and all have opinions, your doctor knows

best. If you have concerns by all means ask you doctor for

alternatives. But dont expect what works for someone else to always

work for you. Just think, if you feel guilty doing what is required

to keep her healthy, how would you feel if you stopped and her lungs

were damaged. I was told with each infection brings scarring. These

areas dont become " un-scarred " . So these areas become useless.

Where I am sure all of the advice is well ment, on every CF group

they advise not changing or stopping any form of treatment without

asking your doctor. So until you get a chance to see the doctor and

address your concerns, hang in there.

Last night as my 18 mo. old attempted to kick out my teeth for daring

to take her out of the tub before she was ready, I thought of you. I

wondered how the evening had gone for you. I checked out your little

angel in the photo album a few days ago, she is so precious! Who

would of thought she is so spunky!!

I hope the doc has some answers for you. Until then, remember you are

doing it because you love her...all will be well.