Re: school nurse has a bad attitutde

[Guest guest]

Christi-

Does your child have an IEP in place? (Are you in the US...what state?).

ABSOLUTELY the school district must give your child her fats through the tube!

A

medical protocol, with a description of her condition as well as all her

necessary treatments should be a PART of an IEP...which is a legal and binding

document.

Contact a special ed advocate or attorney or a local Learning Disabilities

group for guidance! And don't take no for an answer on this issue!

Tracey

[Guest guest]

Hi Christi,

I have just read your post and think that it is disgusting that she

is refusing to do this especially as it is so critical - I would

complain bitterly to her manager if I were you. What reason is she

giving for refusing to do this?

Hope you get it sorted.

Emma. Mum to .

> My daughter who is 5 has been on the diet for one year. She has a

> very rare disesae GLUT1 DS. There are only 72 in the world. It is

> vital that Whitney remain on the diet aand have consistant large

> ketones. She is starting kindergarten and the nurse has refused to

> give her the fat through her feeding tube. I'm at a loss for what

to

> do next. Just wondering what everyone else does at school? Does

> anyone else have a G tube? Thanks

> Christi

[Guest guest]

Include it in her medical care plan-also sometimes helps if there is a doctors

order for it (I know it's a pain to get orders for something so simple but it

helps)

Kathy/WI

[Guest guest]

Christi, it sounds to me that you need to get your doc to write a letter,

and have an IEP done. It is against the law for them not to administer any

meds. Have you explained to the nurse that it is actually a medication? We

fill out medication forms which the doc needs to sign, and then it is a

legal binding document which the school district keeps as does the school

and the nurse.

amanda

[Guest guest]

Where do you live? Most states have a law that says a school district can

not refuse to do something a child requires for medical reasons. If the

nurse refuses then your daughter needs a full time aid (who you can train)

who will do it. As long as you have a note from the doc that says your

daughter must be on this diet they CAN NOT refuse to do it. It doesn't have

to be the nurse, but it does have to be someone. It's all under the ADA.

(Americans with Disabilities Act)

Ally

school nurse has a bad attitutde

> My daughter who is 5 has been on the diet for one year. She has a

> very rare disesae GLUT1 DS. There are only 72 in the world. It is

> vital that Whitney remain on the diet aand have consistant large

> ketones. She is starting kindergarten and the nurse has refused to

> give her the fat through her feeding tube. I'm at a loss for what to

> do next. Just wondering what everyone else does at school? Does

> anyone else have a G tube? Thanks

> Christi

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

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>

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[Guest guest]

I am assuming you are in the US, post to the group on Yahoo.

Its a special ed group and I am sure they can answer your question

Troy and Christi wrote:

> My daughter who is 5 has been on the diet for one year. She has a

> very rare disesae GLUT1 DS. There are only 72 in the world. It is

> vital that Whitney remain on the diet aand have consistant large

> ketones. She is starting kindergarten and the nurse has refused to

> give her the fat through her feeding tube. I'm at a loss for what to

> do next. Just wondering what everyone else does at school? Does

> anyone else have a G tube? Thanks

> Christi

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

> resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

PS - you might want to hand the nurse a doctor's letter stating that not

following protocol would have drastic consequences for the child, then

ask her exactly how much liability insurance she carries.......she

should get the point

Troy and Christi wrote:

> My daughter who is 5 has been on the diet for one year. She has a

> very rare disesae GLUT1 DS. There are only 72 in the world. It is

> vital that Whitney remain on the diet aand have consistant large

> ketones. She is starting kindergarten and the nurse has refused to

> give her the fat through her feeding tube. I'm at a loss for what to

> do next. Just wondering what everyone else does at school? Does

> anyone else have a G tube? Thanks

> Christi

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

> resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>