Needing advice about school

[Guest guest]

Hello everyone

I have a big time delemia. As most knows my daughter is 9 yrs

old and has only been on the diet for 3 weeks. She is delayed but in

school. When she went back to school I brought up a schedule for the

staff and told them I would be staying there for a few days until

they get use to the schedule with the liquid intake and making sure

the food is eaten like it is suppose too.

Well this is my third week at school and still no help from the staff

and when my daughters advocate sent a letter stating that the staff

really needs to make sure this is implimented I was called down to

the principles office and the advocate was called and the principle

told us both that the staff is not able to make sure this happens

cause this is not in their job description to make sure eats

all her food and gets her liquids when she is scheduled too and also

not in their job description to make sure she does not eat or drink

what or when she is not suppose to and they want to make her

Homebound in which a teacher would come to the house to teach her but

only would be able to do 2 days a week for 1 hour each day.

As all of you can tell I am extremely up in arms over this and

expressed to the principle that is not the only child in this

country that is on this diet and it is amazing to me that most other

schools can incorporate this.

Now my question is what do I do. She () deserves and education

and to me they are descriminating against her by not providing what

her with what she needs. I have make sure her water bottles are

labeled with the times she is suppose to get them. is not able

to tell time so she is not able to do this on her own.

Please any advice on what my next step should be or anyones

experiences on this matter would be greatly appreciated.

I am sorry for the length of this email

(mom of )

[Guest guest]

That is crazy! Is your daughter in special ed.? If not you need to get

a conference for other health care needs. The child is to be in the

least restricted envorinment. Home bound is not the least restrictive.

My daughter is in special ed. They feed her at 11:30. This is not when

the other kids eat. She does not go to lunch with the other kids. They

make arrangements with another class for her to go into during lunch and

then she goes out for recess. She has a drink in the am and one with

her afternoon snack. She does have snack with the other kids and that

consists of lettuce and a drink.

It can be done with little to no extra effort on the schools part, just

a little rearranging. Compared to what you are doing there job is

nothing! My school is always in awe of the diet and it wonders on

they will do anything to help. They had to give rectal diastat

one too many times pre - diet. They will do what it takes to keep her

seizure free.

Koch mom to keto kid 6/00

Needing advice about school

Hello everyone

I have a big time delemia. As most knows my daughter is 9 yrs

old and has only been on the diet for 3 weeks. She is delayed but in

school. When she went back to school I brought up a schedule for the

staff and told them I would be staying there for a few days until

they get use to the schedule with the liquid intake and making sure

the food is eaten like it is suppose too.

Well this is my third week at school and still no help from the staff

and when my daughters advocate sent a letter stating that the staff

really needs to make sure this is implimented I was called down to

the principles office and the advocate was called and the principle

told us both that the staff is not able to make sure this happens

cause this is not in their job description to make sure eats

all her food and gets her liquids when she is scheduled too and also

not in their job description to make sure she does not eat or drink

what or when she is not suppose to and they want to make her

Homebound in which a teacher would come to the house to teach her but

only would be able to do 2 days a week for 1 hour each day.

As all of you can tell I am extremely up in arms over this and

expressed to the principle that is not the only child in this

country that is on this diet and it is amazing to me that most other

schools can incorporate this.

Now my question is what do I do. She () deserves and education

and to me they are descriminating against her by not providing what

her with what she needs. I have make sure her water bottles are

labeled with the times she is suppose to get them. is not able

to tell time so she is not able to do this on her own.

Please any advice on what my next step should be or anyones

experiences on this matter would be greatly appreciated.

I am sorry for the length of this email

(mom of )

[Guest guest]

<<Now my question is what do I do. She () deserves and education and to

me they are descriminating against her by not providing what her with what she

needs>>

They can't legally get away with doing that. Well.... they can try but they

would lose in court. Her diet is medically prescribed. I'll bet they would

respond right away to a letter from the neurologist on his clinic letterhead. If

she is in special ed, can you call someone who is in charge of special education

for the whole county, or the region? The schools so often don't bother to find

out what the laws are and try to get away with breaking them all the time.

Unless parents push them, they will do as little as possible sometimes so it

will cost them less. Her right to an education was guaranteed by FEDERAL law in

the 70's under the Individuals with Disabilities Education Act (IDEA). You might

just ask them " Are you familiar with IDEA law? " Go read up at the following

website: www.wrightslaw.com . It's just such a shame that you already do

soooooo much to help your child and then you have to research and learn so much

in order to get what she's entitled to. It's not fair! You must be exhausted.

Maybe you could find out if there is a parent advocacy agency in your area, too.

An advocate knows the ropes and can stand by you and advise you.... they've

" been there, done that " as parents. Is there a branch of " The ARC " in your city

or county? They might be able to help you find an advocate.

Patti

[Guest guest]

Hey ,

Have I been in your shoes!!! My son has been homebound this year and at 5

hours a week it has cost him first grade. He is being retained. I have a

child study meeting coming up (we are in Virginia by the way but I think all

the states have IEPs) because on my own, but too late to save first grade, I

found out that Dillon qualifies for an IEP under what they call OHI (or Other

Health Impairments). Listed under OHI is things like asthma, adhd, diabetes

and EPILEPSY!!!!!! Public schools have to, and it IS in their job

description, be held responsible for upholding a child's medical treatment

while at school. They have to administer medications to children who need

them during school, they have to make sure a child who is diabetic doesn't

get hold of the wrong food or treat. Schools even have to make modifications

for children with peanut allergies. The diet is a MEDICAL TREATMENT. The

problem is, you have to research yourself. Go to your county's public school

website under special resources. Find out if they have a parent resource

center. Request a child study meeting to find out if your child is eligible

for an IEP and if she has epilepsy she would be. In Virginia, if you request

in writing a child study meeting they HAVE to have one by law within 10 days.

Dillon's IEP will have not only a list of things pertaining to his diet but

also individual attention from a special assistant when his medications cause

him to have focusing and attention problems. The assistant is called a

" shadow " and children with severe ADHD impairments can qualify for one. It

has taken me this whole year to find out all this stuff and I found out a lot

of it from attending a child study meeting for a child I tutor....I about

fell off my chair when I read the OHI clause. Yes, I was an elementary

school teacher and had no idea because I was under the impression that IEPs

were for learning disablilties. There are also 504 plans which they talked

me out of last year, which are not as complicated as an IEP to get. They

call for modifications such as if your child was in a wheelchair the school

would have to have ramps etc...but also they can come into play when a

teacher refuses to make simple modifications (such as letting your daughter

eat a snack even though the other kids don't at that time). I had that

problem last year but they got the teacher to comply without going to a 504.

However, had I known he could have had an IEP, I would have NEVER agreed to

this homebound situation!!!

I hope this helps some and you find the answers a lot quicker then I did!

Ariane (mom to Dillon,6, complex partials, keto kid for 19 months, weaning

phenobarb and depacrap)

[Guest guest]

,

Sorry I fired off that long reply before I got to your emails that is

already in special Ed with an IEP in place. That makes it even more

incredulous that you have to go though this. I might start talking lawsuit.

Do they really want to be held responsible for your daughter having a seizure

because they can't or won't follow her treatment plan????

Ariane

[Guest guest]

Its ridiculous. I'm not American but I would assume your answer comes

under IDEA. If you can't get an answer here, ask on the

Special Ed listserve, its on yahoo. I think once you know the authority

and threaten them with a complaint to state dept of ed or something like

that the twits will back down real quick. They are attempting to move

her from regular classroom or at least regualar school to most

restrictive environment there is, home. She is entitled to least

restrictive environment.

I am sure some of the parents around here know this stuff inside out.

Don't let them get away with it

Michlelle, 's mom

" kindacrazy32 " wrote:

> Hello everyone

> I have a big time delemia. As most knows my daughter is 9 yrs

> old and has only been on the diet for 3 weeks. She is delayed but in

> school. When she went back to school I brought up a schedule for the

> staff and told them I would be staying there for a few days until

> they get use to the schedule with the liquid intake and making sure

> the food is eaten like it is suppose too.

> Well this is my third week at school and still no help from the staff

> and when my daughters advocate sent a letter stating that the staff

> really needs to make sure this is implimented I was called down to

> the principles office and the advocate was called and the principle

> told us both that the staff is not able to make sure this happens

> cause this is not in their job description to make sure eats

> all her food and gets her liquids when she is scheduled too and also

> not in their job description to make sure she does not eat or drink

> what or when she is not suppose to and they want to make her

> Homebound in which a teacher would come to the house to teach her but

> only would be able to do 2 days a week for 1 hour each day.

> As all of you can tell I am extremely up in arms over this and

> expressed to the principle that is not the only child in this

> country that is on this diet and it is amazing to me that most other

> schools can incorporate this.

> Now my question is what do I do. She () deserves and education

> and to me they are descriminating against her by not providing what

> her with what she needs. I have make sure her water bottles are

> labeled with the times she is suppose to get them. is not able

> to tell time so she is not able to do this on her own.

> Please any advice on what my next step should be or anyones

> experiences on this matter would be greatly appreciated.

>

> I am sorry for the length of this email

[Guest guest]

,

It seems to me that legally they may be required to cooperate with accomodating

her needs, whatever they may be. I know my daughter has kids in her class that

still aren't potty trained and they have " diapers " that need changing. I'm sure

it's not in their job description but they are teaching special education and

that's what they are there to do. You need to go higher up. You need to

contact the head of education for your district and inform them of this. It

does not seem right to me. You can even take it to the state level if need be.

Is she in special education or regular education? If it's special ed then I

know for sure they are required to do these things for her. Regular ed might be

a little different. Do some calling to the main office for the district. Find

out who to contact until you get the answers you want.

However, assuming you are able to " force " them to cooperate how happy do you

think those teachers are going to be? That is something to consider. You want

your child to receive the best care and you want to trust that they are doing it

to the best of their ability and willingly. Is there another school she can

attend in the area? Even if it's out of district perhaps you can work something

out, especially if it's special education. You have many rights in this area.

I would think your advocate would know ways to help you out.

I became forceful on a couple issues in my daughters classroom last year and it

always felt strained after that. I don't know if they took it out on her in

anyway but it made me uneasy after that. She's in a different class this year

and it's going well and I get full cooperation with her diet. However, we do

not limit fluids so that would definetly make it more tricky. I do think they'd

cooperate though.

Why can't you involve the school nurse? Perhaps it's like giving medication to

children. Can you work with the school nurse and give her the schedule and have

go to the nurse for some of her fluid requirements? I think that's a

good idea.

Hope you figure something out. I don't blame you for being up in arms. I would

be too.

Good Luck,

in KS

[Guest guest]

I feel for you, we too have had school problems in the past, if it

wasn't for them we wouldn't have tried Ritalin and Dalton would still

be seizure free. One thing that might help is to implement this into

your IEP which is what we did, though you said you're having trouble

getting them to follow it, it would still help if you go to court.

The Dr.s note is a good idea, we had one for school, Pediatrician and

Pharmacy when we started diet which explained why we were doing it

and the benifits it could have and what could happen if guidelines

weren't followed, maybe you could have your Neuro fax it to the

school. We've had good luck this year with a new principal who is

very sympathetic, but we've also had some bad ones and teachers.

Stick to your guns, we wish we would have with the Ritalin issue.

Jackie

[Guest guest]

,

I bet you are " kindacrazy " right now! It seems that the principal is not

looking at the KGD as a medical treatment. You might have to work your way

up, right to the superintendent. A couple years ago I worked my way up to

the assistant superintendent for a situation with one of my other son's

medical forms and one phone call to the school and everything was made right.

Some thoughts:

I am sure you have copied every piece of information you have about the KGD

but

do you have the video about the KGD from the Charlie Foundation? It might

help the principal's and 's teachers understand what the diet is about.

It is about one hour long and extremely informative documentary type video.

Dr. Freeman is in it as well as an introduction by Meryl Streep. If you

don't have it I can give you the info for obtaining it. (I live right in

Northern VA and you are welcome to borrow my copy) I did have Dillon's

teacher and counselor watch it.

Questions you can bring up regarding children with Diabetes or peanut

allergies or any severe food allergy...Are they not responsible for these

children either?

It is so sad to me that a staff working with children won't do everything

they can to help a child succeed....Isn't that what they are there for:-(

Let me know if you need the video.

Ariane

[Guest guest]

Well funny thing is I had a similar situation with my sons Pre

school , They told me i had signed a " child's Rights paper " stating

that if my child was hungry he would be fed. I tried to explain to

them that they could not feed him that he was on a special diet ...I

even took a note from his Dr. stating that they couldnt feed him

anything other than what I packed for him each day , they also had a

problem with the Diet Soda ...NO SODA AT SCHOOL was all they would

say then they threatened to kick him out of school if i didnt ' FEED

him properly and to call CPS on me for starvation " Well I had the

Nutritionist call the school and explain it in more detail and i also

told the school they would be liable for anything that happened to

him should they feed him which included the Hospital bill if he

needed to be readmitted , Try something like that... Your child has

rights . I know it is a pain in the butt but cause a commotion , Call

the Super. of the district and RAISE HELL !!! Good luck to you and

YES !!! on the video i recently moved and i lost it otherwise i would

give you my copy , Take care and everything will work out

> ,

> It seems to me that legally they may be required to cooperate with

accomodating her needs, whatever they may be. I know my daughter has

kids in her class that still aren't potty trained and they

have " diapers " that need changing. I'm sure it's not in their job

description but they are teaching special education and that's what

they are there to do. You need to go higher up. You need to contact

the head of education for your district and inform them of this. It

does not seem right to me. You can even take it to the state level

if need be.

>

> Is she in special education or regular education? If it's special

ed then I know for sure they are required to do these things for

her. Regular ed might be a little different. Do some calling to the

main office for the district. Find out who to contact until you get

the answers you want.

>

> However, assuming you are able to " force " them to cooperate how

happy do you think those teachers are going to be? That is something

to consider. You want your child to receive the best care and you

want to trust that they are doing it to the best of their ability and

willingly. Is there another school she can attend in the area? Even

if it's out of district perhaps you can work something out,

especially if it's special education. You have many rights in this

area. I would think your advocate would know ways to help you out.

>

> I became forceful on a couple issues in my daughters classroom last

year and it always felt strained after that. I don't know if they

took it out on her in anyway but it made me uneasy after that. She's

in a different class this year and it's going well and I get full

cooperation with her diet. However, we do not limit fluids so that

would definetly make it more tricky. I do think they'd cooperate

though.

>

> Why can't you involve the school nurse? Perhaps it's like giving

medication to children. Can you work with the school nurse and give

her the schedule and have go to the nurse for some of her

fluid requirements? I think that's a good idea.

>

> Hope you figure something out. I don't blame you for being up in

arms. I would be too.

>

> Good Luck,

> in KS

[Guest guest]

My daughter has an IEP and 504 for OHI

It is amazing the modifications that can be made

And yes. since the KGD is a medical treatment, a Prescribed diet by a

Neurologist it has to be followed at school

My daughter has an Aide with her at all times to help her stay focused in

school and to help her when she gets frustrated with her school work etc

This is covered under the OHI

She checks her ketones and a log is kept at school and in a book for me for

home use

If her ketones are low and her lunch needs to be postponed for awhile, she

still gets to eat after

There is always a nurse at this school

She is in a self-contained classroom with a regular 2nd grade, this year

Last year she was in an ESE class

The school has a prescription for the KGD and ketone checks, plus blood

glucose and serum ketone checks if needed

Believe me, it has not been easy, sometimes you need to be at the school alot

and fight

But first you need to find out your school districts laws and regulations

All the info you need is on the schools websites

Or call the education dept or go there and get a copy of these laws

The teachers are amazed at how well my daughter does with the diet

They have seen her improve, academically too

Her teacher will inform me whenever the class is having a party or special

snack so I can try to arrange her meal

I do hope your advocate can help

I substitute for the school nurse and have sat in on many IEP's

There are many children with IEP's and 504's written with less problems than

our children with Epilepsy

Sometimes it is both Who you know and What you know

Good Luck

Get informed first -- then fight!!!

Sandi

mom to Zara

[Guest guest]

If a diabetic in school needs a snack they can

So, just because the KGD is not as " popular " as the diabetic diet

it does not mean the school cannot follow the same

Has the Keto team written the diet and fluids as a " prescription " to the

school?

And I do mean on a legal prescription pad!

I know schools have to follow a " prescription " not just a letter from the

doc

" prescriptions " are a legal treatment and needs to be followed

Just have him specify the fluids/foods etc whatever is needed during the

school hours be very specific

The school hates getting the scripts but it does help

I get 'Prescriptions " even when I feel my daughter needs to be re-tested

instead of waiting the years wait

Good Luck

Sandi

mom to Zara