Re: school accomations

[Guest guest]

Hi ,

It is harder for them to stay caught up if they are absent allot. Plus, the

older they get the more work they have to do. It is good that you are

looking into a tutor. The important thing here is that the older our kids

get, the more they just want to be like everyone else. OR it is just the

opposite. We make them dependent on everyone else by making allowances for

them because they have an illness. Your goal when raising a child is to

make them independent. There are times that they need to have allowances

made!! What you might have to do is go to bed earlier in the evening so

that he can get up earlier to do his vest and any other treatments,

breakfast, etc. that needs to be done in the morning. My daughter has to

get up at 4:00 sometimes so that she can do her vest and all of these things

to be to drill team practice at school at 6:00 am. It can be done. Good

luck and I hope Jordan feels better so that he doesn't miss much school.

Tina W., mother of , 18yo wcf

school accomations

Hi,

My name is and I have a son, Jordan, who has PCD. They

treatments are like CF kids minus the digestive problems and add in

the ears. He is seen by a CF doc.

My question is? What kind of accomadations are being made for your

children at school? Jordan has missed a lot of school over the

years and it is starting to get more difficult for him to stay

caught up the older he gets. He is 11yrs old and in 5th grade. We

have an IEP meeting to address tutoring. I don't have a clue what

the tutoring would look like. Would it be daily and for how long or

2-3 times a week? Also we're going to talk about a modified school

day for next year. Jordan will be attending Middle School for 6th

grade next year. He needs to be ready to leave the house at 6:30am

to meet the bus. Being realistic I just don't think we can pull

this off and get his full vest treatment in.

I would appreciate any thoughts or your experiences in this area.

Thanks,

/MN

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The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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[Guest guest]

We have a 504 set up for my son, now in first grade, when I asked for him

being exempt from the tardy and absent days his dr. said that was unacceptable.

A lot of kidos with CF get up before 4 am and do treatments to be to school

on time. We needed to adjust our schedule accordingly.

Oh guess what guys!!!!! At our school the cafeteria is an all porpose room.

That's where the kids come and wait to be excused to their classrooms in the

morning and catch the buss in the PM. It's also used for gym and assemblies.

Just think about all the dirt and bugs and everything else in that CARPET.

Yes, you heard me....carpet. Well, I've been on the principal to get it

removed and they finally passed it in the budget. We're getting rubberized

tile!!!!! In the summer of course while the kids are off on vacation.

Next year he will be getting a pass to jump to the front of the lunch line as

in our school he's not allowed to carry his enzymes. To the person from PA,

how did you get the school to allow your son to carry his enzymes?

If your school uses computers then I'd have a section in the 504 where the

computers need to be sanitized daily. This may not happen as it depends on the

custodian. It's in my son's 504 but I don't think it's being done. His

teacher had mentioned about getting a keyboard cover so that only he uses it. I

haven't heard whether or not they got that yet. It's been good 5 months since

it's been mentioned.

Next on my agenda, it's been there and I've been fighting for it, is air

conditioning in the school. They have 3 floors and it gets above 100 degrees up

on 3rd floor.

Well, I'll quit yapping and allow others to get their words in.

from PA

[Guest guest]

Thank you Tammy for the advice. We were told that in PA no kids were allowed

to take their enzymes with them in school. Now I know that isn't true. Even

our Dr. had mentioned that if another child had gotten a hold of them that it

wouldn't do any harm. It's not a real drug, just a naturally occurring

substance in the body that our kids can't put out.

ANYWAY, Thanks for offering an ear and any future advice you can give me.

P.S.

Has anyone ever had their school tested for any type of molds or bacteria

found in the air? And if so do you know what the cost was?

from PA

[Guest guest]

Hello, ,

Just wanted to let you know that in Fairfax County, VA, our public schools

ALLOW the students to carry their enzymes in their pocket..

For lunch, Henry still breaks off to take his enzymes from the nurse (won't

swallow the capsule yet). He goes to the front of the lunch line when he

buys his lunch.

Good luck to you! I will also be sitting down with our school principal and

nurse this summer to discuss next year, 1st grade.

Jen Chastain in andria

Mom of , , and Henry, 6-year-old with CF