Re: Glenna/school

[Guest guest]

Hi--I never mind anyone reading mail sent to one person--it is usually

because I am answering them, but we are here to help everyone

My daughter loves school--BUT the stress does trigger seizures

We tried very modified days

She went for 1/2 days--and they would try to get her main subjects in during

that time--then was tutored at home because even 1/2 days did not work

When she said she wanted to go back to school-( she wants to be like her

siblings)-we went to 2-3 1/2 days then worked into full days

Of course even when she was in full time--whenever she needed a " stress free

break " she was allowed to leave the class room (with an aide) and go to a

" downtime room " and be in a quiet environment-- & /or they called me and I picked

her up at school

Lately, this past month, since her seizures are every morning, we let her

sleep, and when she wakes, we then go to school

In the afternoon. when they feel she has had enough, they call and I am there

to get her

Her school work is also modified, she gets less spelling words, less math, no

P.E. at this time--seems the heat is triggering seizures, limited homework to

none

My husband and I work opposite shifts to help with all the e " on-call " time

The school is very receptive and tries to get her educated in the least

stressful way

DIET-- we did a protein increase--1gm per kg/w She is 26 kg therefore is

now on 26g protein

Calories were left. but now we took away 50 calories-- because we

saw a difference in seizure control, but the morning ones are continuing

We now have the night meal lowered in calories than her other 3 meals

Glucoses were high in the morning, although ketones varied

I would always want to tweak the ratio slowly-- just to allow more choices

This will be our next step

Her wt and ht increased in the year and dietitian never made any diet

changes, think it all caught up to her

The fine tuning is harder than following the diet for the 18 mos

Then after the 18 mo to 2 yr mark we are always " fine-tuning "

Growth spurts!!

Hormones--not looking forward to this stage

I know too much protein -in excess-will turn to glucose--yet not enough--then

the body takes from lean muscle--glucogenesis--and glucoses rise

Too many--too little calories---it is a true science

Our team always says --MEDS??--tell us when you are ready to re-start them

I hope never

BUT-- I want to finetune and finetune first-with all the help from everyone

I do not rely on the dietitian--I did call when all the seizures in the

morning started to check in --she suggested increase protein or decrease

calories

by 200 calories

Well I decided the protein first, because with s help, we figured her

seizures and high glucose were an early a.m. thing not all day--Plus 200 cal!!

The 50 cal drop is more realistic, slower but it is a one smaller meal, not

skipping a meal

We are on a 3.5 ratio and hoping to decrease--have not decided to what

ratio--I am doing the pro and cal thing first

Our Neuro feels, when I need him he is there --but goes along my decisions

with the diet, because I showed him all the info from the list and believes all

of you know more than any Keto team--or at least feels she is at a period of

continual fine-tuning

I still believe this diet is helping and she is still better on the

diet-personality and academically--just being a real little girl--of course with

some

seizures thrown in!!

Wishing you the best in fine-tuning

Someone on the list has always said--a drop in the ratio is exactly what some

kids need --not always the inc that you would think of, and most dieticians

feel is necessary to gain control again- when seizures start again

This will be our next step

Keep me informed

I am always learning--with everyones posts

Sandi

Mom to Zara