Re: starting schoolDEB

[Guest guest]

In a message dated 1/7/2002 9:17:45 AM Eastern Standard Time, gdattig@...

writes:

<< My oldest who is 9 is in school full time and

we didn't know about the CF until she was in first grade and she was sick

when she was younger all of the time but I think now she doesn't get sick as

much because her immunities are so much better. >>

Ditto.....I did find out about til 2 weeks before the first day of 1st

grade. She is now in 6th grade. 11 and acts like Blair in the

Exorcist sometimes.........one minutes she is my lovely girl - the next

watch out..........

Rosemary in New York with three children with CF - they are 11, 9, 5.......

I coined the phrase " BREATHE DAMMIT "

[Guest guest]

Rosemary,

So is my oldest. I think a lot of it is because we have to make them do

treatments. Don't you? They want to be independent but can't when they are

forced to do things they don't want too. I think sometimes I am going to have

a monster when she gets into the teen years because she act like one all

ready. The rolling of the eyes, the talking back, not listening, and doing

what she wants to do and not worry about the consequences. She is going to

drive me crazy.

Have all of your kids with CF been on Tobi at the same time? My girls are

right now and I am having the worse time getting them done before they have

to go to school. Do you have any advice for me that could speed up the

process? We had the worsted morning last Friday I thought I was going to go

CRAZY!! Deb A

[Guest guest]

Deb,

That sounds like Eilish and she's only 4, God help us.

Its frustraying how sweet they can be you could just eat them , then in the

blink of any eye they change.

Re: starting schoolDEB

> Rosemary,

> So is my oldest. I think a lot of it is because we have to make them do

> treatments. Don't you? They want to be independent but can't when they are

> forced to do things they don't want too. I think sometimes I am going to

have

> a monster when she gets into the teen years because she act like one all

> ready. The rolling of the eyes, the talking back, not listening, and doing

> what she wants to do and not worry about the consequences. She is going to

> drive me crazy.

> Have all of your kids with CF been on Tobi at the same time? My girls are

> right now and I am having the worse time getting them done before they

have

> to go to school. Do you have any advice for me that could speed up the

> process? We had the worsted morning last Friday I thought I was going to

go

> CRAZY!! Deb A

>

>

> 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]

In a message dated 1/7/2002 10:12:14 AM Eastern Standard Time,

gdattig@... writes:

<<

Have all of your kids with CF been on Tobi at the same time? My girls are

right now and I am having the worse time getting them done before they have

to go to school. Do you have any advice for me that could speed up the

process? >>

The only advice - get up earlier! I am super organized I lay out the

clothes, shoes, knapsacks, lunches, etc. the night before but with treatments

you can't predict who will spit up a lot, who will go the bathroom and for

how long, how long eating (spilling) takes. The only thing do reduce the

problems is extra time. Mine are all on Tobi at the same time - it makes it

so much easier and less fighting....

Rosemary in New York with three children with CF - they are 11, 9, 5.......

I coined the phrase " BREATHE DAMMIT "

[Guest guest]

,

I have a 4 year old to with CF and she is turning it to my oldest to which

really scares me. Deb A

[Guest guest]

,

We live out in the Country and my 4 year starts school a half an hour later

then they do and you got to remember I have two that have treatments and vest

so it takes more time getting things done. So I have to get both of them done

before they go to school and that half an hour is a lot of time for us to get

treatments done. I just don't think we should have to get them up at 5:30 AM

that is hard for a 9 year old and a 4 year old to go all day plus I think

this medication makes them more tired. Deb A

[Guest guest]

Deb, You're so right. There is no reason why you need to get those children

up at 5:30 in the morning to do treatments. That was one of my gripes with

headstart and it'll be one of my gripes with the school district if it is

ever suggested. It is not our childrens fault that they have CF. They

didn't ask this. If they wanted to be involved with other activities then it

would be their desision to get up that early. Let them get their rest. They

need it.

from P.A.

[Guest guest]

Have your Dr. document the fact that they need rest, have treatments and that

they should be last to be picked up and first dropped off for same reasons.

If the principal won't help go to School Superintdedant. Don't argue - go on

to the next level person. Everyone has someone above them. Just keep moving

up. You could even threaten to go to local paper. Bad press is a no no.

It will be viewed the Big Bad Bus Co v. the poor kids with CF.....who are

forced to get up exhausted at the crack of dawn........

Good Luck....Rosemary in NY

[Guest guest]

Deb,

Could you drive them to school? Eilish hasnt started school yet but when I

go to work we need to have it all done by 8am.Luckily my husband gets up at

6am and does it all, I only need to do breakfast. Im hoping we'll be as

organised when school starts, but we only live a 5 minute walk to school.

Did they say they could change the route? I hope they do.

Re: starting schoolRosemary HELP!!

> Rosemary,

> I do all those things in the morning but we are the first to get on the

bus

> in the morning and the bus driver seems to think he has to be her 15

minutes

> earlier then he is supposed to be which really pisses me off. I have tried

to

> talk to him about it but he is an old man that only cares about himself. I

> get the girls up at 6:00AM and he is there by 7:10 and school does not

start

> until 8:30. Today I went into the school and reamed into the superintended

> and told him I can't do it, the bus schedule has to change. I can't do 30

> minutes of vest treatments on 2 kids and 40 minutes of nebulizer

treatments

> on two kids and somehow get breakfast in there before the bus comes. I

don't

> think I should have to get them up at 5:30 AM. This medication makes them

> really tired and they seem so run down as it is. I talked to her teacher

> today when I was there and she noticed it too. I just feel so stressed out

> right now I don't know if I can handle much more. I bawled all the way

home

> after talked to everyone at the school. I don't want to be that kind of a

> person I have always been a person not to complain and handle anything

that

> comes my way. I never thought I would say I can't HANDLE THIS!! It just

> doesn't seem fair why we have to go through this and it is not fair to the

> kids either. I feel like I have turned into this evil mom who all she does

is

> yell and say hurry up, don't turn the nebulizer off your not done yet, all

I

> do is yell I hate it and I am so worry my kids will be so rebellions

because

> of it. I don't want to be this way. I would love to hear others how they

> handle things. Thanks for letting me vent it has been a really bad day.

Deb A

>

>

> 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 have a question about all of this school talk. I am a teacher and have to be

at school very early. I have to get my sons up at 5:00 am in order for my mom

to be able to get their vest done while I am getting ready. Thank God for her.

My sons are three years old now. We have one vest in our household and have

been told by Advanced Respiratory that they do not allow two machines in one

home. The insurance company did not say this. The doctor's office did not say

this. The doctor's actually put in a request for two vest, but the company told

me no. The insurance company paid for the machine and vests very easily.

Advanced Respiratory sent one machine with a " vest " for each child. I am not

sure of the purpose of that because they are the same size. It takes them an

hour in the mornings for both of them to get finished with the " vest " . Then,

they are so exhausted when I pick them up that they want to take a 3-4 hour nap

and go back to bed at 9:00 pm. I don't get to spend much waking time with them

at all. So, my question is this, does anyone out there have two machines?

Thanks, Peggy

[Guest guest]

I have often wondered (on days when doing the vest on both Ben and

Cara. . .I feel for you doing this every morning), if American

Biosystems could make a vest machine that would have hose hookups for

two kids on the same machine?

RE: Re: starting schoolDeb

I have a question about all of this school talk. I am a teacher and

have to be at school very early. I have to get my sons up at 5:00 am

in order for my mom to be able to get their vest done while I am

getting ready. Thank God for her. My sons are three years old now. We

have one vest in our household and have been told by Advanced

Respiratory that they do not allow two machines in one home. The

insurance company did not say this. The doctor's office did not say

this. The doctor's actually put in a request for two vest, but the

company told me no. The insurance company paid for the machine and

vests very easily. Advanced Respiratory sent one machine with a " vest "

for each child. I am not sure of the purpose of that because they are

the same size. It takes them an hour in the mornings for both of them

to get finished with the " vest " . Then, they are so exhausted when I

pick them up that they want to take a 3-4 hour nap and go back to bed

at 9:00 pm. I don't get to spend much waking time with them at all.

So, my question is this, does anyone out there have two machines?

Thanks, Peggy

[Guest guest]

Hi Peggy

We dont even have the Vest here in England, but even

our other pt stuff we have to share like their wedge (

supplied by Hospital) and we have had to buy our own

pt bed for when they get a bit bigger. i looked into

getting my parents to send me the vest but it is so

expensive, it was an impossible mission. our physio in

the morning takes about an hour , we have to do the

clapping.And Jake and Jordan are always tired before

they even get on the school bus.

Take care

Natasha, mum to Marc wo/cf, Jake & Jordan w/cf and

Dee-anna w /asthma

W --- jojay9@... wrote: > I have a question about

all of this school talk. I

> am a teacher and have to be at school very early. I

> have to get my sons up at 5:00 am in order for my

> mom to be able to get their vest done while I am

> getting ready. Thank God for her. My sons are three

> years old now. We have one vest in our household

> and have been told by Advanced Respiratory that they

> do not allow two machines in one home. The

> insurance company did not say this. The doctor's

> office did not say this. The doctor's actually put

> in a request for two vest, but the company told me

> no. The insurance company paid for the machine and

> vests very easily. Advanced Respiratory sent one

> machine with a " vest " for each child. I am not sure

> of the purpose of that because they are the same

> size. It takes them an hour in the mornings for

> both of them to get finished with the " vest " . Then,

> they are so exhausted when I pick them up that they

> want to take a 3-4 hour nap and go back to bed at

> 9:00 pm. I don't get to spend much waking time with

> them at all. So, my question is this, does anyone

> out there have two machines? Thanks, Peggy

>

>

[Guest guest]

Have they tried doing the flutter at all.It really does a good job. You

could have them do that in am , then latter before bed, you could do the

hand pt on them. I know you all have the flutter. It is only $49.00 here in

states and it is the size of a pipe.......let me know if you want more

info. It is also on web page.AXCAN Pharmaceuticals Inc..or even just flutter

might bring it up in a search.

Let me know, I can also mail you literature for your review. & to ask the

doc about. That is all my ERIN used until the VEST came about .

LOVE & HUGS, grandmomBEV

RE: Re: starting schoolDeb

Hi Peggy

We dont even have the Vest here in England, but even

our other pt stuff we have to share like their wedge (

supplied by Hospital) and we have had to buy our own

pt bed for when they get a bit bigger. i looked into

getting my parents to send me the vest but it is so

expensive, it was an impossible mission. our physio in

the morning takes about an hour , we have to do the

clapping.And Jake and Jordan are always tired before

they even get on the school bus.

Take care

Natasha, mum to Marc wo/cf, Jake & Jordan w/cf and

Dee-anna w /asthma

W --- jojay9@... wrote: > I have a question about

all of this school talk. I

> am a teacher and have to be at school very early. I

> have to get my sons up at 5:00 am in order for my

> mom to be able to get their vest done while I am

> getting ready. Thank God for her. My sons are three

> years old now. We have one vest in our household

> and have been told by Advanced Respiratory that they

> do not allow two machines in one home. The

> insurance company did not say this. The doctor's

> office did not say this. The doctor's actually put

> in a request for two vest, but the company told me

> no. The insurance company paid for the machine and

> vests very easily. Advanced Respiratory sent one

> machine with a " vest " for each child. I am not sure

> of the purpose of that because they are the same

> size. It takes them an hour in the mornings for

> both of them to get finished with the " vest " . Then,

> they are so exhausted when I pick them up that they

> want to take a 3-4 hour nap and go back to bed at

> 9:00 pm. I don't get to spend much waking time with

> them at all. So, my question is this, does anyone

> out there have two machines? Thanks, Peggy

>

>

[Guest guest]

GrandmomBev

the flutter sounds like a great idea but i have not

ever seen one , if you have some info you could send

that would be great :-)

thanks

Natasha, mum to Marc wo/cf, Jake & Jordan w/cf and

> Dee-anna w /asthma

>

__________________________________________________

[Guest guest]

I will send the first thing in the morning .I am sure there are others that

have used it on the list. It was extremely popular for quick & travelers

treatments. kids away at school also. I don't mean it took the place of the

PT /vest but it might with yours. ERIN didn't have to do anything other than

that and as active as she was on the trampoline. it was all she needed.

Send me your mailing address as well so mail out to you tomorrow.

LOVE, grandmomBEV

RE: Re: starting schoolDeb

GrandmomBev

the flutter sounds like a great idea but i have not

ever seen one , if you have some info you could send

that would be great :-)

thanks

Natasha, mum to Marc wo/cf, Jake & Jordan w/cf and

> Dee-anna w /asthma

>

__________________________________________________

[Guest guest]

In a message dated 1/9/2002 1:55:57 PM Eastern Standard Time,

mks65roses@... writes:

<< if American

Biosystems could make a vest machine that would have hose hookups for

two kids on the same machine? >>

It probably wouldn't be worth it financially since the % of people who need

two hookups is not that great (I think)...

Rosemary in New York with three children with CF - they are 11, 9, 5.......

I coined the phrase " BREATHE DAMMIT "

[Guest guest]

Please send information on the flutter. I didn't think they could do it at three

though. Thanks, Peggy

[Guest guest]

My address for the flutter information is 1027 Batson Mill Road; Charlotte,

Tennessee 37036. Thanks, Peggy

[Guest guest]

I'll send out today.

LOVE, GRDMBEV

RE: RE: Re: starting schoolDeb

My address for the flutter information is 1027 Batson Mill Road;

Charlotte, Tennessee 37036. Thanks, Peggy

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]

Thanks ! Deb A

[Guest guest]

Rosemary,

I did go to the superintendent and we got the job done. Thanks Deb A

[Guest guest]

I wish they did it would save me a lot of time. Deb A

[Guest guest]

Grandma Bev,

We do have one flutter that my brother in law who is a respiratory therapist

gave to us. But everytime my oldest uses it she laugh and I am not sure if

she is doing it right or how long you should do it. Deb A

[Guest guest]

Bev , sorry i took so long with my address, damn

computor hasnt been working. it is

Natasha White

133 Elm Road

Thetford

Norfolk

IP24 3HH

England

Thanks Again , Natasha

--- bev bevd@...> wrote: > I will send the

first thing in the morning .I am

> sure there are others that

> have used it on the list. It was extremely popular

> for quick & travelers

> treatments. kids away at school also. I don't mean

> it took the place of the

> PT /vest but it might with yours. ERIN didn't have

> to do anything other than

> that and as active as she was on the trampoline. it

> was all she needed.

> Send me your mailing address as well so mail out to

> you tomorrow.

>

> LOVE, grandmomBEV

>

> RE: Re: starting schoolDeb

>

>

>

> GrandmomBev

> the flutter sounds like a great idea but i have not

> ever seen one , if you have some info you could send

> that would be great :-)

> thanks

> Natasha, mum to Marc wo/cf, Jake & Jordan w/cf and

> > Dee-anna w /asthma

> >

>

> __________________________________________________

>

[Guest guest]

No problem, I figured when you could get around to it , you'd do just that

:) I'll have info in the mail in the ,morning and put you on the

INFORMER mailing list also.:)

LOVE & HUGS, grandmomBEV

RE: Re: starting schoolDeb

>

>

>

> GrandmomBev

> the flutter sounds like a great idea but i have not

> ever seen one , if you have some info you could send

> that would be great :-)

> thanks

> Natasha, mum to Marc wo/cf, Jake & Jordan w/cf and

> > Dee-anna w /asthma

> >

>

> __________________________________________________

>