RE: health plan?

August 31, 2003

: I have a granddaughter that is 13 and has been on a 504 plan

about five years. On the plan, we added that she was not allowed to go into the

nurses' office because of the many sick kids that they see each day and the

germs they leave behind. If she needs to see the nurse, she waits in the main

office and the nurse comes to her. We feel that this helps to keep her as

germ free as possible in a school situation. I hope this has been helpful.

vbeteach

August 31, 2003

,

I would think about adding something about standing in the lunch line. As a

former teacher, I can remember days when kids would stand in line for 20

minutes and only have a few left to eat. If brings her own lunch,

then this is not an issue. On days when they serve pizza, it could come in

handy.

Colleen

Mom to Elyse, 2 1/2 w/cf

health plan?

HI,

Can anyone else think of something to add to my list of requests for a

school health plan for . She is almost 5 but needs to be supervised

with enzymes still. I have a meeting set up for next Friday with her new

teacher. Here is what I have so far.......

1.. to be free to use the bathroom.

2.. to be allowed to go to the nurses office to get enzymes before

eating

3.. to be allowed to drink from a provided water bottle as needed

rather than the water fountain

4.. To be free to use the hand sanitizer as needed and to be asked to

use it after computer use

5.. to have the computer she would be working on sanitized before she

uses it. (keyboard and mouse).

6.. to be moved away from kids with obvious cold symptoms such as:

excessive non allergy coughing/sneezing, runny nose with green or yellow

phlegm

7.. if she misses more than one day of school to have the work from all

missed days sent home

8.. if she needs to be admitted or be on home IV's to have the weeks

work sent home

9.. to be notified after school if she complains of her g-tube site

hurting or to be notified immediately in case of the tube being dislodged

it is not an official health plan meeting and I still have to do that with

the principal and nurse, but I am trying to get the teacher up to speed

here. Any input would be great. I can explain all the reasons for each of

these things but I didn't want to write a book for a post and I have gone on

about this topic enough..........

thanks for any help,

August 31, 2003

Hi there,

I don't know if you had asked for & I sent the school booklet yet??????? I

would be happy to send to you if you'd like & haven't asked yet.. I would

need your mailing address for that. It is a paper booklet. No charge

LOVE & HUGS, grandmoMBEV

health plan?

HI,

Can anyone else think of something to add to my list of requests for a

school health plan for . She is almost 5 but needs to be supervised

with enzymes still. I have a meeting set up for next Friday with her new

teacher. Here is what I have so far.......

1.. to be free to use the bathroom.

2.. to be allowed to go to the nurses office to get enzymes before

eating

3.. to be allowed to drink from a provided water bottle as needed rather

than the water fountain

4.. To be free to use the hand sanitizer as needed and to be asked to use

it after computer use

5.. to have the computer she would be working on sanitized before she uses

it. (keyboard and mouse).

6.. to be moved away from kids with obvious cold symptoms such as:

excessive non allergy coughing/sneezing, runny nose with green or yellow

phlegm

7.. if she misses more than one day of school to have the work from all

missed days sent home

8.. if she needs to be admitted or be on home IV's to have the weeks work

sent home

9.. to be notified after school if she complains of her g-tube site

hurting or to be notified immediately in case of the tube being dislodged

it is not an official health plan meeting and I still have to do that with

the principal and nurse, but I am trying to get the teacher up to speed

here. Any input would be great. I can explain all the reasons for each of

these things but I didn't want to write a book for a post and I have gone on

about this topic enough..........

thanks for any help,

August 31, 2003

,

She should be allowed her drink bottle on her desk and to be able to

take it to P.E. Lessons. I can't believe all the stuff you guys need to

go through in the US just for school, it's ridiculous. They should

allow this anyhow. We actually don't let Eilish go to the sick room if

she is sick (she keeps her enzymes in her pocket), they keep her in the

classroom and call me, as the sick room is full of sick people.

(Australia)

health plan?

HI,

Can anyone else think of something to add to my list of requests for a

school health plan for . She is almost 5 but needs to be

supervised with enzymes still. I have a meeting set up for next Friday

with her new teacher. Here is what I have so far.......

1.. to be free to use the bathroom.

2.. to be allowed to go to the nurses office to get enzymes before

eating

3.. to be allowed to drink from a provided water bottle as needed

rather than the water fountain

4.. To be free to use the hand sanitizer as needed and to be asked to

use it after computer use

5.. to have the computer she would be working on sanitized before she

uses it. (keyboard and mouse).

6.. to be moved away from kids with obvious cold symptoms such as:

excessive non allergy coughing/sneezing, runny nose with green or yellow

phlegm

7.. if she misses more than one day of school to have the work from

all missed days sent home

8.. if she needs to be admitted or be on home IV's to have the weeks

work sent home

9.. to be notified after school if she complains of her g-tube site

hurting or to be notified immediately in case of the tube being

dislodged

it is not an official health plan meeting and I still have to do that

with the principal and nurse, but I am trying to get the teacher up to

speed here. Any input would be great. I can explain all the reasons for

each of these things but I didn't want to write a book for a post and I

have gone on about this topic enough..........

thanks for any help,

August 31, 2003

Bev

Is this something that gives you advise on things to put in your

504 plan? If so I would really like to have that as well. I was

wondering what it is that you do. I understand you work for the

pharmacy ( CF )? I guess that I just don't know for sure just

wondering.

Also, I am really wanting to get involved somehow wether it be

volunteer or anything really. I have not really found nor heard of

anything in this area. Thought that you might know if you work for the

foundation or other parts of organization. Thanks

I know that my son is too young to be worrying about school but

just in case ya never know what is going to happen with my oldest who we

are still testing and he will start school next year.

Ashauna

August 31, 2003

,

I'm not sure this post will go through because the last two posts I've

sent (including that food list!) never showed up.

Anyway, back in 1999, Ortho-McNeil commissioned me to write a

Back-to-School insert for the Fall edition of their CF Life

newsletter. It explains 504's and OHI's along with suggestions that

may help your child--from elementary school through high school.

The article is still on McNeil's web site at:

http://www.cfcare.com/news/cf_life/fall99/page1.htm

You'll have to scroll to the bottom of this first page and keep

clicking " next page " to get to the article. There's also an early

article about GSH in that edition.

Also, it may help you to know that public schools are required to

provide home (or hospital) schooling for students who are out ill for

a certain amount of days. This doesn't mean the teacher comes every

day, usually just so many hours per week to cover new material and

keep the student on track. But this is often a big relief for parents

who don't feel prepared to tackle algebra or biology homework when

their kids are in high school!

Kim

August 31, 2003

> 6.. to be moved away from kids with obvious cold symptoms such

as: excessive non allergy coughing/sneezing, runny nose with green

or yellow phlegm

>

When my son was diagnosed in May I requested the same thing. The

nurse said I had to have a doctor's note. I knew they were making up

the class lists for the next grade so I also requested that he not be

put in the same class with other CF children (not knowing if there

were any others). Guess what the nurse's comment was .... have the

doctor write a note. I was pissed. Here I just learned my son has CF

and all I got from her was have a doctor write a note.

If my arm was only long enough to reach through the phone.

jan

September 1, 2003

GOSH, YES, EXCELLENT idea & you are so right . At the school I worked

.....They just came to me & I had them stay in the office (actually my

sectretary's room & until their mom /family came for them. It too was a

private school.(17 yrs.) I had worked 11 years prior to that in public

schools & they sent students to the NURSE/clinic. It did have a separate

room for the really sick ones with a small cot type bed.

It should just be the norm to get them out of school before other children

OR they get any sicker. Maybe we all ought to start putting that in soooooo

, it will be come a standard request & they wont bulk at it ...

thanks again for your insight...love to all

LOVE & HUGS, grandmomBEV

health plan?

HI,

Can anyone else think of something to add to my list of requests for a

school health plan for . She is almost 5 but needs to be

supervised with enzymes still. I have a meeting set up for next Friday

with her new teacher. Here is what I have so far.......

1.. to be free to use the bathroom.

2.. to be allowed to go to the nurses office to get enzymes before

eating

3.. to be allowed to drink from a provided water bottle as needed

rather than the water fountain

4.. To be free to use the hand sanitizer as needed and to be asked to

use it after computer use

5.. to have the computer she would be working on sanitized before she

uses it. (keyboard and mouse).

6.. to be moved away from kids with obvious cold symptoms such as:

excessive non allergy coughing/sneezing, runny nose with green or yellow

phlegm

7.. if she misses more than one day of school to have the work from

all missed days sent home

8.. if she needs to be admitted or be on home IV's to have the weeks

work sent home

9.. to be notified after school if she complains of her g-tube site

hurting or to be notified immediately in case of the tube being

dislodged

it is not an official health plan meeting and I still have to do that

with the principal and nurse, but I am trying to get the teacher up to

speed here. Any input would be great. I can explain all the reasons for

each of these things but I didn't want to write a book for a post and I

have gone on about this topic enough..........

thanks for any help,

September 1, 2003

Yes, Bev. You did send it. thank you it is really very helpful. I am really

just picking brains for stuff. I have gotten some GEREAT ideas too. like a

picture in the teacher's roll book with special info on the back so a sub can

identify her with out fuss and Many others

health plan?

HI,

Can anyone else think of something to add to my list of requests for a

school health plan for . She is almost 5 but needs to be supervised

with enzymes still. I have a meeting set up for next Friday with her new

teacher. Here is what I have so far.......

1.. to be free to use the bathroom.

2.. to be allowed to go to the nurses office to get enzymes before

eating

3.. to be allowed to drink from a provided water bottle as needed rather

than the water fountain

4.. To be free to use the hand sanitizer as needed and to be asked to use

it after computer use

5.. to have the computer she would be working on sanitized before she uses

it. (keyboard and mouse).

6.. to be moved away from kids with obvious cold symptoms such as:

excessive non allergy coughing/sneezing, runny nose with green or yellow

phlegm

7.. if she misses more than one day of school to have the work from all

missed days sent home

8.. if she needs to be admitted or be on home IV's to have the weeks work

sent home

9.. to be notified after school if she complains of her g-tube site

hurting or to be notified immediately in case of the tube being dislodged

it is not an official health plan meeting and I still have to do that with

the principal and nurse, but I am trying to get the teacher up to speed

here. Any input would be great. I can explain all the reasons for each of

these things but I didn't want to write a book for a post and I have gone on

about this topic enough..........

thanks for any help,

September 1, 2003

Hi there,

It doesn't just do that in any form as such . BUT it does tell the school

the problems or circumstances that a child with CF might have. Yes, I do

think you could pull the info out & a copy with the 504 request would also

" back up " your requests.

I can send , if I already haven't, to you when you send me your address. I

don't save all the addy's unless to put on my newsletter mailing list when

asked......

I am co-founder of the CYSTIC FIBROSIS PHARMACY. It was started as my

granddaughter was born with CF 19 years ago & there were NO others who dealt

with all the problems that are unique to those with CF......we didn't have

the TX then, but now that they are done, we include that as well as CFRD, we

are specialist in the field & have been certified managers from the

national MEDICAL boards of those fields. WE are NOT associated with the CFF

AT ALL> we started 7 years before they started there FOR PROFIT Pharmacy.

Its name is CF Services Pharmacy. They actually contract with a bigger firm

that does their orders, etc. The offices are the Bethesda address of the CFF

nonprofit Research Fdn.

I travel to ED day & exhibit , sponsor many thru out the US & have done

Canada & Latin America (all countries) We also service folks all over the

world........

We have an ALTERNATIVE meds department ...also with our COMPOUNDING, we

save many $$ in some of the more expensive meds.....We do creme/sauves for

many meds that folks cannot swallow & they can rum them in/on the skim &

they work extremely well for many. we even do some for the doctors who

actually serve the CF patients.:)

I do a folksy newsletter the INFORMER. 16 pages, I do it at home the old

fashion way & a printer (another grandparent(CF) does for me . I do an ED

day to pay for the postage & the CF Pharmacy helps me with the labels:)

I send out (thru the CF pharmacy's sponsoring the mailing , all the booklets

, etc that are given me from the many pharmaceutical companies produce .

Their way of paying back to folks who buy their products. Many of these

things are also (should all be) given out at your CF Clinics.

My granddaughter has been VERY well & attend the DUKE CF center all her

life.

She has been in hospital once......last Oct. & that was due to her appendix

bursting & her ignoring it until she HAD to go to ER ...that hospital didn't

know how to deal with the CF 7 kept giving her morphine-----WRONG!!! her

bowels completely closed down -remember she had a mecomiun iliues at birth

(that is how we knew she had cf -2 days old). Anyway, we finally had to

ambulance her to Duke. She was well & out (everywhere-hehe) and home in 4

days. ..Always go to CF center docs for anything first..........

I have 5 married children whom I am VERY close to as well as the " in-laws "

Have know most since the 7th grade. they attended school, & colleges together

.. then all married same year, different months ...oh, two in June . All had

very big weddings. many of same folks as the others as all are close in age

& friends are same.

I had 7 children in 9 years . I have lost 2. not to CF though .

I also have 10 grandkids. I was at delivery & helped with each of them..We

still vacation each summer for a week together -now we add the grandkids

boyfriends & girlfriends. 4 are in college :):0

Gosh, I think that is it for now. if I have missed anything .....Just ask ,I

am an open book. I am divorced (after 37 years)...... that was19 years

ago...he traveled & had an affair..sooooooooo. I said good bye from me. .Oh