Re: New here need advice...please

[Guest guest]

Many kids use G-tubes and that makes it easier. I don't know if your

child has a G-tube. The diet is very strict and there can be no cheating

but it is amazing how compliant the children are. If you try the diet

and it doesn't work, you haven't lost anything and might just get some

improvement. There is no way to get an idea whether the diet will work

before you start. Nearly everyone reports an increase in cognitive

abilities on the diet.

If you fast your child for a day, or they have had a sickness and not

eaten and you see less seizures, this might indicate that the diet might

be helpful.

The diet has several serious possible side effects; one of them is heart

problems. I don't remember the particulars. All children should be

checked for this, before and during the diet. There are also other

possible side effects, like kidney stones and dehydration, etc.

Bill

geislermom@... wrote:

> Hi all,

>

> I am new here and need some help. I have a daughter that is 10

> years old. She has every seizure there is. She had a stroke at 15

> months old, which left her with severe mental retardation, and

> non-verbal, non-walker. She lost the right side of her brain from the

> stroke as well as parts of the left. She has been all the medicines

> kids can be on as well as some that are just for adults. Some of the

> medicines made her so mean. She has the VNS as well. She is still

> having seizures with not much to no control. The dr. said that we

> could try the diet and see how that works for her. I have read some

> of the foods that the kids eat and I know my daughter would not eat

> them. I gave her some cream one-day and she would not drink it. She

> will not understand why we are making her eat the food on the diet and

> why she can't eat when she wants to eat. She is a great eater. My

> question is: How do you do the diet when the child does not

> understand why they have to be on it? How well will the diet work if

> you have tried all the medicines as well as the VNS? She also has

> heart issues, can the diet effect her heart?

> Thanks for you help and letting me vent.

>

> (mom to Kimmie)

> www.hugsandhope.com

> www.caringbridge.org/va/kimberley

>

>

>

>

>

> " 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]

>

Welcome to the group, you will find it a great place to be

Many of the kids on the diet started it without an ability to understand

why mom is feeding this food, some will come to understand it over time,

some won't. My daughter, , certainly couldn't understand why when

we started the diet nearly six years ago, she was four, mentally

challenged and with expressive and receptive language disorders. So we

couldn't explain to her the " whys " , it just was.

It wasn't easy, not at all, but you get through it - and its more than

worth it when the diet works, its truly a miracle.

There are various ways to get the food in, no one size fits all

approach. wouldn't drink straight cream either, I mix hers with

oil, flavour and sweetner until its the consistency of whipped cream you

would put on fruit. We call it ice cream or dessert and she has it with

every meal. Some kids will take their cream watered down if you call it

milk but there are all kinds of ways to get the stuff in. Some meals are

easily done without cream and if your child will eat a lot mayonnaise

you can skip the cream completely. Some even do the diet dairy free.

Where theres a will, theres a way. But you have to make a commitment to

it, the first few months can be quite hard, both for the child and the

family. But trust me, it does get better. And now Jess is to the point

where even though she doesn't always like it, she " gets " that if she

doesn't follow the diet she could very well end up in the hospital with

seizures for a few weeks (she does her own version of status).

I would urge you to try it, stay on the list, you will get lots of

advice, ideas and support and use your time between now and initiating

to play around with meals, without using the scales, to see what she

will take and what she won't, to get some ideas of how to get the food

it. Much better to play around now when the pressure is off then try to

come up with stuff she will take once you've started. Check the files

section, there are all kinds of recipes there. You can geusstimate

amounts for now

, jessica's mom

> geislermom@... wrote:

> > Hi all,

> >

> > I am new here and need some help. I have a daughter that is 10

> > years old. She has every seizure there is. She had a stroke at 15

> > months old, which left her with severe mental retardation, and

> > non-verbal, non-walker. She lost the right side of her brain from

> the

> > stroke as well as parts of the left. She has been all the medicines

>

> > kids can be on as well as some that are just for adults. Some of

> the

> > medicines made her so mean. She has the VNS as well. She is still

>

> > having seizures with not much to no control. The dr. said that we

> > could try the diet and see how that works for her. I have read some

>

> > of the foods that the kids eat and I know my daughter would not eat

> > them. I gave her some cream one-day and she would not drink it.

> She

> > will not understand why we are making her eat the food on the diet

> and

> > why she can't eat when she wants to eat. She is a great eater. My

> > question is: How do you do the diet when the child does not

> > understand why they have to be on it? How well will the diet work

> if

> > you have tried all the medicines as well as the VNS? She also has

> > heart issues, can the diet effect her heart?

> > Thanks for you help and letting me vent.

> >

> > (mom to Kimmie)

> > www.hugsandhope.com

> > www.caringbridge.org/va/kimberley

[Guest guest]

I am glad you found the group. I am newer here and have already benefited from

the support as well as the concern and overall care that is shown. My son is 9

months old and is feed through a g-tube, so I don¡Çt have the exact same

issues as you maybe facing. But I do know that the group has found ways to make

the foods tasty and likable to there kids. There are many different age kids on

the diet who have parents that are members of this group so I am sure there will

be some helpful suggestions. If you haven¡Çt heard of the movie

¡ÈFirst do no harm¡É I suggest you rent it, its based on a true

story and is quit encouraging. Forget that fact that you have tried all the

meds your doc¡Çs can throw at you and the fact that your daughter has the

VNS, the diet could still help. Many of us in this group have tried a varity of

meds only to try to diet and have it help. Hang in there and vent all your

want, that one of the reason we are here.

, mom to Ethan

New here need advice...please

Hi all,

I am new here and need some help. I have a daughter that is 10

years old. She has every seizure there is. She had a stroke at 15

months old, which left her with severe mental retardation, and

non-verbal, non-walker. She lost the right side of her brain from the

stroke as well as parts of the left. She has been all the medicines

kids can be on as well as some that are just for adults. Some of the

medicines made her so mean. She has the VNS as well. She is still

having seizures with not much to no control. The dr. said that we

could try the diet and see how that works for her. I have read some

of the foods that the kids eat and I know my daughter would not eat

them. I gave her some cream one-day and she would not drink it. She

will not understand why we are making her eat the food on the diet and

why she can't eat when she wants to eat. She is a great eater. My

question is: How do you do the diet when the child does not

understand why they have to be on it? How well will the diet work if

you have tried all the medicines as well as the VNS? She also has

heart issues, can the diet effect her heart?

Thanks for you help and letting me vent.

(mom to Kimmie)

www.hugsandhope.com

www.caringbridge.org/va/kimberley

" 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]

Hi,

If the doctor thinks it's OK to try with all her medical conditions it

might be worth a try. Have you tried watering down the cream? She may not

know the difference. My son doesn't. My son also doesn't understand why he can

only have what I give him. He is 4 1/2 years old and mostly non verbal but

adjusted well. He doesn't know how to cheat either so that makes it easier.

Maybe you can try an Adkins version to ease her into it. It might be easier

than you think. It have given us much more control of seizures and even better

has made them much less severe. So for us it is worth it.

Bobbi