Re: to Satnam

[Guest guest]

Oh, how I remember when was seizuring all the time. She went from walking

to crawling and all I could get her to take was a bottle. She was almost three

years old and had been eating whole foods before this. And, she didn't take the

bottle well. That was just prior to pulling her off the drugs. Do understand

where you are coming from. You are in a hard spot. .

kristansmommy skkahalma@...> wrote:HI . Kristan can have more than

one solid meal a day if she

cooperates. This kid of mine is very stubborn. In the morning she

will not take a solid meal after she has woken up, we've tried many

times. When she won't cooperate, she just drools out all of her

meal. Kristan still doesn't know how to chew and all of her foods

have to be blended smoothly and she hasn't been exposed to too many

foods. She is already allergic to eggs and tofu, mayo too b/c of the

egg in it. Most of the time she is very sleepy and I can't get a

solid meal into her. I struggle with this all the time. The

seizures just make her so tired and when she is sleepy it is just

easier to get a bottle into her. I too have wondered if she was just

all solid meals fed if it would make a difference, but the seizures

are interfering with her eating.

I'm glad is doing well (have been reading your posts).

Satnam

> > > Bill, because Kristan is mostly bottle fed, we figure that is

why

> her

> > > BM's are so runny. When she has solid meals once a day

> consistently

> > > the BM's are not runny.

> > >

> > > She was on antibiotics recently for her pneumonia. I'm so

afraid

> to

> > > give her yogurt, it has carbs and she gets very little carbs,

but

> if

> > > I give her like half a teaspoon a day and not calculate into

her

> > > meals, would that be ok? Do the capsules of acildolphilus have

> carbs

> > > in them and are they over the counter or a prescription

required.

> > >

>

>

>

> " 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]

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..........

kristansmommy skkahalma@...> wrote:

Hi , this will be Kristan's second MRI too. I am a bit worried

about the sedation, but if they use one that they used on her when

they did her ABR test (hearing test) then she should be ok, she never

reacted to it. Kristan always takes forever in waking up when

sedated, she is sound asleep and we are glad as she gets rest, but

the hospital staff tend to freak out as they say she should wake up a

half hour after the procedure and I always tell them she won't be

waking up in a half hour, she will probably be out for two hours at

least. I'll tell them when we get to Children's next month, but they

won't listen.

Yes, I am going to take Kristan to the chiropractor, it's worth a

shot. I haven't even discussed it with her neuro, but maybe I'll run

it by her gp since I will be seeing her today. I have a consult

appointment on Monday, but may have to cancel, now Kristan has come

down with a cold again! I don't understand how she caught it, I

always keep her well bundled when we go out, maybe she caught

something from another child, but no one has been sick that I can

tell. I am starting to wonder if her immune system is really weak,

do kids who have seizures have weak immune systems? She is not

taking any fluids this morning and only had 6 oz of her formula

yesterday, that was all she had all day! I resorted to syringing in

60 ml of water this morning and then another 60 ml of her formula a

little while ago. She had 94 seizures yesterday! Probably more as I

am sure we missed some. So far today she has had 30 seizures. She is

able to get some rest in between, sleeping for an hour or two at a

time. I am taking her to the doctor at noon today to make sure it

doesn't turn into pneumonia. She has had a slight temperature and

thankfully it keeps coming down with the Tempra. Chest sounds clear

so far and she has a bit of a cough.

So, the saga continues.... I hope is coping well.

Satnam

> > Dear Satnam

> >

> > We are getting ready for winter and had some things to do in the

> yard today, and that is her happiest place - outside, so it was a

> great time. She came in hungry and tired, and fell asleep almost

> immediately. I think this lower ratio just is making her hungry

and

> if the 2.3:1 doesn't do it, I will go back to the 2.5:1 and just

give

> her apple slices that she loves to bring the ketones down if I see

> them climbing too high. I usually check ketones quite a bit, and

> will just need to make sure I am.

> >

> > Glad Kristan is on the mend. And, that she is not dehydrating.

> Does she usually love her bottle? drank on a bottle until she

> was three. She was so sick, and it was the only way I could get

> nourishment into her. In the end, before the med wean, she wasn't

> even keen on the bottle.

> >

> > Too bad Kristan can't tolerate eggs. The custards are so smooth

> and go down so easily. They have sure been a big hit with of

> late.

> >

> > .

> >

>

>

>

>

>

>

> " 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]

Dear Satnam - It is Thursday, as I respond, and I will pray that the visit

tomorrow will be a good one with the chiro. Someone mentioned taking to

one while we were in the haze of meds... and the neuro didn't think much of the

idea. However, the meds weren't much of an idea, either!

had immunizations before I got her, but no more... Whatever was given her

on her arm did not heal for months, literally. It was a nasty scab that just

did not heal. She was near dead when I got her, anyway... why would they

vacinate her!

I have read too much about immunizations to be comfortable with them. Let

others, if they please, but not my children, thank you.

Eager to hear how it goes. Am thinking about a chiro for . How could it

hurt???

was up most of last night. High ketones that I had to use some apple juice

with, then she would sleep and about every ten to fifteen minutes she would wake

up and say something, like: " feed Sadie in her bowl. " (Sadie is our dog.)

Decent language, as she hasn't been talking since all this has been going on,

but so strange. Anyway, about 4 a.m. she slept a whole hour, then seizured at 5

and slept until about 8 a.m. Soooooooo, in spite of it all, only one seizure in

the last day. Guess they are truly winding down.

I am going for high ketones with her. She is on 3:1 and I am staying there for

two weeks. May have to come down a little..but am going for higher level

ketones. This episode of seizures was worse than pre-keto. Not in severity,

but in length. Wiped out two weeks. And, why is she always so sick on

Thanksgiving! Poor dear. Anyway, she is sure a sunny girl today, though tired.

Free is a wonderful price for the chiro visit. Don't be afraid to accept it as

a gift. If it works for Kristan, you can tell others. He sounds like a dear

man. LET ME KNOW HOW IT GOES!!! I will be praying for her. .

kristansmommy skkahalma@...> wrote:

Hi , poor , she must be so wiped out from the seizures.

Are they very strong?

We went and saw the chiropractor today and had our consultation. I'm

so excited! I know he can't cure her, but I had a good feeling about

it. He said he can only try and he can't make her worse and he said

he wouldn't even charge us! Of course, we told him that wouldn't be

right, he said we could work something out later. He made us feel so

comfortable and wasn't pushy and said it is totally up to us if we

wanted to proceed and also said it's good that she is off the meds as

he is a strong believer that the drugs just make things worse for the

body. I mentioned to him that I think the vaccination has something

to do with her having seizures and he said we would be there forever

if we got him talking about that. Basically, he said you shouldn't

do them and that most chiropractors who have kids never vaccinate

their kids and there was some survey or study done on kids immune

systems to see whose would be better, kids of chiropractors who are

not vaccinated and kids who are vaccinated and the chiropractors'

kids who were not vaccinated had the better immune systems. I think

he felt sorry for us after hearing Kristan's story. He has treated

kids with seizures and said every kid is different, we won't know

until we try if chiro treatment will be beneficial for her. Even if

her seizures don't come down, the chiro treatment just may make her

feel better overall, it could help with development. It's worth a

try. We go for her first treatment on Friday. I'm going to try to

not get my hopes up, but I probably will. Wish us luck.

Kristan is doing much better today and has taken more of her formula

today.

I pray no more seizures for . I will let you know how Friday's

appointment goes.

Satnam, mom to Kristan, 2 years old

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

not being able to get high ketones

> > ,

> > 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.

> >

> >

> >

> >

> >

> >

[Guest guest]

Dear Satnam

Wow, it does sound like it might be doing something. If she is napping without

seizures she is getting better rest and not having screaming ones is wonderful

for EVERYBODY. They still unnerve me!

Really, what is the problem!! Who cares which is doing the job???? I don't

think the P.T. can just back away from the commitment, whether you are using

another resource along with her, or not. Is this service through the schools?

Honestly. What's the gripe! Let's look at Kristan's well being and progress.

Like each therapy has to be done in a vacuum?! Honestly.

Yes, sat very late. I began to wonder if she ever would. Then she rolled,

then belly crawled (that one is HARD on the wardrobe!), then finally she got up

on all fours. She crawled for so long, and really got so she could scoot along

fast. We had almost all wood floors throughout the house, so she could really

move. No resistance. Then she began to stand and walking came in time. Her

walking was very stamping, and sometimes still is... sensory integration stuff.

When she gets excited she goes on her toes. But she can manage up and down the

hill in back, and is a climber.

It has taken her all of her five years to develop these things, but the fact is

she can do them. And, I no longer lift her on the bed (she is short and the bed

is rather high) and she climbs on with just a bit of a boost.

It is phenomenal, when I look back at how slow it all came... BUT it did

happen! So hang in there, and keep encouraging her. Seizures make everything

slower. After this bout of seizures, lost her potty training. She rarely

ever wet herself. Now we are back to me reminding her and putting her

on...since the seizures look like they are over. While they were going on she

wet and messed herself all the time. Talk about moving backwards! Today she is

perky and it won't be long, I know, until she is back to being careful about

pottying.

Don't let the therapist get you down. Just don't mention the chiro again, if it

is a sore spot with her. Some folks just don't like chiropractors, for some

reason. Just like some think the keto diet is some " alternative " medicine and

drugs would do the job better. Hang in there! .

kristansmommy skkahalma@...> wrote:

Hi , hope all is well and that had a good weekend playing

in the snow and is getting used to the higher ratio.

When you mentioned that didn't sit until over a year old and

walk until over two years old, I couldn't remember how many seizures

a day she was having before keto. I often wonder if Kristan will be

able to walk, I do believe she will one day and know that we have a

lot of work ahead of us to get there. She is sitting independently

now and did that at 19 months of age. I know they do make little

developmental gains even with the seizures.

Kristan had another chiro appointment yesterday and we go back

tomorrow. She was a bit fussy, but I let her look out the window

which distracts her. Still too soon to tell if the treatment will be

beneficial, but her screaming seizures have stopped and when she has

napped it's been seizure free, could be a coincidence or it could be

the chiro treatment. I mentioned to Kristan's physiotherapist that

we are taking her to the chiro and she gave me this look of terror

and said that she doesn't like to treat kids who are seeing a chiro

b/c then you don't know what is helping them improve. I told her the

chiro is to help with the seizures, not with her range of motion and

movement. She let it go for now as she is off for Christmas now, but

I regret telling her now. She is a great physiotherapist and has

brought Kristan a long way. If she brings it up when she sees

Kristan in January, then I am just going to tell her we tried the

chiro for a month and stopped, but we are not stopping, we figure we

will keep at it for 3 months or so. Why would she be so bothered by

the chiro? It really bothered me that she reacted that way. I

didn't argue with her.

Satnam, mom to Kristan, 2 years old

> > > > ,

> > > > 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.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

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... &

kristansmommy skkahalma@...> wrote:

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.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >