Re: Any suggestions??- /

[Guest guest]

Thanks for the info. Everyone has given so much great

advice. I'm printing all of them out and will

definitely put most of them to use!! I know they

won't have to use a sedative for Jake for the EEG. He

doesn't mind that at all. Compared to what he went

through a year ago with the coma and the difficulties

healing from that, the EEG to him is a piece of cake.

I guess I better stop using that expression huh?

Thanks again and keep the ideas coming. Anything to

make this easier on Jake!!

~Jake's mom

--- smclague claguelaw@...> wrote:

> Thought I'd jump in on this one too, having just

> gone through this

> ourselves. has essentially covered it,

> for sure! But, I

> thought of a couple things that helped our 4 year

> old

> transition to the diet.

>

> 1. We talked with her about the diet (for about a

> month before

> intitiating it) and explained what it would be like

> to be a " keto

> kid " , especially when we started removing foods from

> her diet that we

> knew were not allowed on the diet.

>

> 2. While it seems everyone has a different way to

> start the diet,

> our doctor told us to stop food intake at midnight

> on Sunday and

> check in to the hospital on Monday morning to begin.

> We followed

> this, however, because we were so concerned with the

> fasting time we

> let eat foods with carbs in them only until

> midafternoon Sunday

> and then after that limited her to protein and fat

> with very little

> carb(for her this meant cheese and salami--her

> favorite of late)--

> this seemed to work well as she went into ketosis on

> Monday afternoon-

> -exactly 24 hours after she had stopped consuming

> carbohydrates--and

> she had her first 1/2 strength meal (ie. half the

> calories) for

> dinner.

>

> 3. We were also concerned with having an EEG

> during this

> fasting period because she really detests the

> feeling of them

> preparing her head for the electrodes--so the issue

> is always looming

> whether they will try to administer an oral sedative

> to help them

> with the process. Our concern centered on both her

> reaction upon

> waking to the oral sedative (ie crying hysterically)

> and the fact

> that the oral sedative contained carbohydrates,

> further delaying her

> achieving ketosis. So, because our neuro is over 75

> miles from home,

> we stayed in a hotel on Sunday night and kept

> up late (about

> 11PM) and then woke her up very early (about 5:30AM)

> so that by the

> time they were ready to place the electrodes on her

> head she was

> ready for a nap and slept through the whole thing!

>

> 4. Arriving the day before also allowed us to take

> on a quick

> tour of the pediatric unit to meet the nurses and

> see the play room,

> etc. so that she knew where we were going the next

> day.

>

> I'm sure there are other things that helped, but

> it's late. Good

> luck!! has been on the diet for just under a

> month and is

> doing terrific--seizure free and weaning her meds.

>

> ne and Mike

>

> >

> > >

> > > Hi- I have a long email on getting ready for the

> > > diet, so read on if you are interested!! The

> > > Ketogenic Diet Book by Freeman is helpful, but I

> > > found it to be a bit frightening before starting

> the

> > > diet- a little overwhelming, but read it all

> after

> > > we started the diet and it made much more

> sense!!

> > >

> > > I still didn't know exactly what to expect

> before

> > > starting the diet despite all the help I got

> from

> > > people on the board. The day we went in for the

> > > diet, Noah's seizures had gotten a lot better

> and

> > > our doctor asked if we still wanted to go ahead

> with

> > > it. I am so glad we did. He had gotten better,

> but

> > > still wasn't the Noah we once knew and he still

> > > wasn't seizure free at that time.

> > >

> > >

> > > I anticipated that the diet and everything it

> > > entailed was going to be much harder than it

> really

> > > is. My biggest fears were about not being able

> to

> > > give him foods that he loved, and how would we

> ever

> > > eat as a family again? or go out to eat? or

> handle

> > > birthday parties for goodness sake??? Think of

> it

> > > this way: is depriving him of snacks and sweets

> > > really a bad thing? And, despite many

> > > misconceptions, they can eat pretty well on the

> > > diet. An example of Noah's favorite meals are as

> > > follows:

> > >

> > > Breakfast:

> > > Bacon with butter, strawberries or watermelon, &

> > > heavy cream that I color with food coloring

> (make it

> > > fun!), sweeten with liquid Sweet & Low and pure

> > > flavorings. Right now his favorite is chocolate.

> I

> > > also use strawberry, vanilla, banana, cherry,

> etc.

> > > You can ask your dietician which flavorings they

> > > recommend. I order mine from Bickford Flavors

> > > online- they have a HUGE selection of flavors to

> > > choose from. He drinks his cream through a

> straw,

> > > frozen like ice cream, or with an oral syringe

> (his

> > > choice!).

> > >

> > > Lunch & Dinner:

>

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