To

November 19, 2004

Hi , I know, another cold. I don't take her anywhere!

Sometimes I feel like I dont' know what I'm doing. Anyways, she took

her formula this morning and also had some water. Last night wasn't

good, threw up. She has been able to rest and is resting now. Her

breathing sounded bad last night and it sounded crackly and then

wheezy so I gave her some puffs from her inhaler last night and this

morning and she sounds a bit better but when she is awake you can

tell she is working hard just to breath, I pray that this is not the

start of pneumonia. She was awake this morning and trying to play in

her own little way and making sounds so she is kinda getting back to

her normal self. Her gp wants to see her this afternoon to make sure

she doesn't need antibiotics.

Glad to hear is doing better on the 2.5:1 ratio. Kristan is on

the 2.5:1 ratio now and has been for two weeks, but I'm afraid with

her teething and throwing up, she's still mainly just had her formula.

Take care

Satnam, mom to Kristan, 23 months

Keto kid since Aug. 2003 and currently weaning from the diet

> Dear Satnam

>

> Another cold!!! Poor Kristan. Everyone is different concerning

immunities I think. has wonderful immunities.........just

amazing. Last winter we all got the flu and she was over it so much

faster than the rest of us, it was unreal. If she gets a cold, it is

short short in duration. When I first got her she was in such horrid

shape and someone prayed especially for her that she would have good

immunities, so I credit the Lord for them! If she hadn't had them,

no doubt she would not have made it.

>

> I think on the whole children that seizure have such stress on

their bodies that everything is affected. It has to impact the whole

child in so many ways, health wise, emotionally, mentally. How could

it not? They live in such a horrid state day in and day out, no

matter how well we care for them.

>

> I remember when she was seizuring all the time just praying she

could get an hour's rest... before the next one. It was such a

nightmare, and it sounds like Kristan still is having those days. It

is a heavy load to carry, and I feel so bad for you and for little

her.

>

> has shown significant behavior changes since upping her ratio

to 2.5:1. Such a sweeter girl. Still some of the old stuff, but I

am wondering if she is just remembering how to be naughty and

continuing those behaviors only without the zest she had when she

originally did them. Anyway, she is sure having nicer days.......as

are we all, at this household.

>

> No seizures so far this month. Last one was October 8th, I think.

This is our best since the diet began. And, it does not seem the

ketones have to be quite as high as I though during bedtime. Too

good to be true.

>

> Is Kristan at 2.5:1 now? It is scarey when you can't get them to

take even something to drink. Very scarey.

>

> Keep in touch..........

>

December 8, 2004

-

What is in the formula? Could she have a soy interolance...?

Tracey

December 8, 2004

Prior to the diet, what kind of formula was she on? Because if it *is* a

soy allergy or intolerance, her formula could always be adjusted. If she's on

a typical bottle fed keto formula, you probably use RCF, Polycose and

Microlipids. But you *could* use a different protein source...like egg white,

or

another non-soy, low carb protein powder.

Just thinking here...

Tracey

December 8, 2004

Hmmmm! Excellent question. The Ross carbohydrate Free is soy based, but she has

been on it since late August/September and has been throwing up since the last

week in October.

Re: to

-

What is in the formula? Could she have a soy interolance...?

Tracey

December 11, 2004

Hi , I hope is doing well. WE just got back from

Children's Hospital yesterday night, it is a ferry ride for us, we

live on an island and the Children's hospital is on the mainland.

Kristan had her MRI. WE are still waiting for the radiology report,

but the neuro quickly told us that they could see no congenital

abnormalities. So, we still don't know what is causing the seizures.

Kristan did real well, only one seizure yesterday, could have easily

missed it. I don't want to jinx anything, she is going through a

good period right now. Maybe the chiro really is working for her? I

was going to go down to the 2:1 ratio tomorrow, but she is doing so

well right now I want to see how she does on the 2.5:1 ratio a few

more days.

I've gotten over the P.T.'s reaction on taking Kristan to the chiro.

I decided that I'm not going to tell anyone else about it, not even

her neurologists. Kristan's P.T. is through the Infant Development

Program, which has been really great.

I hope is back to herself again, thanks for sharing about her

going from rolling to crawling to walking.

Satnam

> > > > > ,

> > > > > had several accidents too when he was seizuring

> > last

> > > > week. So

> > > > > frustrating to have them go backwards in development and

yet

> > > those

> > > > seizures

> > > > > can literally crumble a child in days.

> > > > >

> > > > > We are from Indianapolis, IN. Not that far from

Michigan.

> My

> > > > hubby and I

> > > > > are reading the " book " again too. I also went to the

> Charlie

> > > > Foundation

> > > > > website and I find that to be the most encouraging of

all.

> > That

> > > > boy was on the

> > > > > diet a LONG time and is now off. He is my hero.

> > > > >

> > > > > , you hang in there and be strong and know that you

have

> > > > support from

> > > > > all of us here. That is what is so great about this list.

> > > > >

December 12, 2004

,

I am glad to hear that is on the mend with her seizures. It is such a

relief isn't it. Enjoy it! has the same regression in cognitive

skills when he is seizuring. Its truly like he is a totally different kid.

It is so hard these days and the school is getting tired of it. Its like

last week he was a nice, eager to learn, happy boy and then a week like this

past one I got a call 4 out of five days telling me of the things he is

definiant, uncooperative and very slow cognitively. This can vary from week to

week. Friday, I got a call and they said he had 25 seizures. It is

exhausting

and it is so hard to find the right placement for him in school b/c these

things vary so much.

Take care and I hope that things stay slow on the seizure front for

I wonder if all go so backward when they begin a bout of seizuring??? How

could they? They go to school, preschool, etc. Anyway, it is nice to have

her " back " to herself.

December 12, 2004

Hi , glad to hear that is getting back to herself. That's

so great that you are seeing the developmental things happening, how

exciting! I'm excited just reading about it.

I know what you mean about regression when they have a lot of

seizuring. I always think Kristan is going to regress, but the only

thing that I have picked up on is when she first learned to sit

independently it seemed she was sitting real well and only

wiggled/balanced a little and latel she has been doing a lot

of " rocking " which could be a form of stimulation, but she isn't

balancing that well lately when she sits.

Kristan continues to do well and has been very vocal today, way more

sounds and less blowing of the raspberries. I really think she is

hearing her voice and enjoying it and just keeps on using her voice.

I've waited so long for her to make sounds, I just love it. I keep

phoning my parents up and letting them listen to her, I'm so excited

about her voice. With the seizures down, we do notice she starts

vocalizing more. WE had company today and she was very quiet, I

think b/c she didn't recognize the people and their voices When she

is around people she knows she will vocalize a lot.

I keep forgetting to tell you, lately Kristan's ketones on the 2.5:1

ratio have been negative to trace and today they have been closer to

small. I'm so thankful she is doing so well. It's a mystery that

she's doing so well with negative ketones, but then I also think this

justifies our taking her off of keto too. Not right now though, we

are sticking with the 2.5:1 as I don't want to jinx anything.

I'm so excited for you and , can't wait to hear what she does

next.

Satnam

> Dear Satnam

>

> Wow! It does sound like something good is happening with Kristan!

What a relief for her little body.

>

> is out of the seizure mode, almost. Still a few. It think it

was about three weeks. This is her second good day and she was doing

well. Back to where she was three weeks ago. I notice developmental

things going on, too, today. Mostly I see it with language. Today

the little girls got up early and I stayed in bed across the hall

from where they were playing. My older son got up and she asked him

to make her a pancake. Something like " Maybe you can make me

pancake? " She was waiting for me to get up and get her breakfast.

The " maybe " was the question word that we have not heard her use.

>

> And, now I see her really looking at me and trying to figure out

exactly what I am saying.

>

> I am giving full explanations, not watering them and using gestures

and a lot of cues, just to see what she can process.........and it is

so interesting, because she is really really listening. You can kind

of see the wheels moving. Example: we have bookcases full of books,

and she loves to look at books, and always has a pile out she

leaves. So I was telling her to put the books back where she got

them on the bookcase so we could go and have some pop. No pointing,

no looking to the bookcase and at the books, just looking at her. It

took her some thinking, but she was able to put it all together.

And, she is getting her potty training back after weeks of

regression. I wonder if all go so backward when they begin a bout of

seizuring??? How could they? They go to school, preschool, etc.

Anyway, it is nice to have her " back " to herself.

>

> Glad Kristan is doing better. 's MRI didn't show anything,

either. I see that as a positve. And the fewer seizures is

WONDERFUL. What a break for her little body. Don't you wonder how

these kiddos survive??? I do.

>

> Have a nice rest of the weekend... &

>

December 12, 2004

Dear Satnam - Just the relief from the seizures must make Kristan feel so much

better, and like " talking. " Can you imagine what she endures daily?!!! Too,

once they know how to sit they begin to experiment... reaching and moving about,

tipping, kind of seeing just what they can do, so that may be what she is up to.

Kind of worrisome to mumma, but it is all a part of learning and body awareness.

, before she could even walk, was a climber. Out of five, she is my only

climber. Whoa. And, she still is. I find her standing on arms of chairs, to

reach things. It is bothersome, but she never can figure out why I don't want

her to. Falls some, but never really has been hurt. I figure it is good

exploring, so hate to interfere too much.

At this point I am wondering about the diet... but what are our choices. She

still has not quit seizuring, and she didn't seizure this much pre-diet. At 3:1

she is in midrange ketones at least, by nightime. Cut calories, but end up

giving her a snack to get ketones up, so calories aren't much lower. Wish I had

a real keto team to run it all by, but figure I will stick it out until the

seizures subside and see what happens from there.

I think that chiro is helping Kristan. Travel is bad here right now, and we

live outside the city, but it may be an option for us, come spring.

So tickled for Kristan. It is so much fun seeing them moving along. And I

think what you are seeing is because she has gotten some relief from those

nasties!

Best.........

kristansmommy skkahalma@...> wrote: