Re: I Love all the good news/Gretchen

September 9, 2004

Hi Gretchen -

Hope is alive and thriving! These stories are just

incredibly inspirational to those of us who are not

yet seizure free!

How exciting for Ethan that he now looks forward to

school! I remember reading your posts last school

year where you couldn't even mention doing math

homework (am I dreaming this? Do I have the right

kid?) or it would send him into either a real or

pseudo seizure. I know you must have been dreading

the start of school - fearing the worst - certainly

not the case - sounds like he's feeling better (maybe

less anxious now that he's off meds?) And ditching

the full time aide will only make him feel that much

more relaxed and " normal " . I just think Ethan's story

is amazing.

In regards to his brain " learning " to have the pseudo

seizures - I totally agree. The brain has a funny way

of compensating when it feels overstimulated or

overwhelmed. I'm sure Ethan did " check-out " when on

high doses and thru weaning meds. School was probably

a huge stressor from all aspects - academically,

socially, emotionally, and perhaps, physically. On

the flip side, as a mom, I would have done the same

thing - first response is to take away the known

triggers. In retrospect, easy to see how reinforcing

those " seizures " were for Ethan. Think about how much

stronger Ethan will be now that he can recognize signs

of stress and coping strategies to pull him thru rough

times.

I'm just so happy that Ethan's first week is going

well and hey - if he can survive the first few days -

he'll be AOK from here on out!

Thanks for posting!

(mom to - 2.5 yrs. old - ketokid since

6/03 - med free since 3/27/04 - working on the seizure

free part but getting closer)

--- gretchen_kissock gretchen_kissock@...>

wrote:

> I've been away a week or so, and what a pleasant

> surprise I've come

> home to. I quickly scanned recent postings, and

> forgive me if I am

> missing something, but the news of our kids seems to

> be particularly

> good the last few days. Stella, Langan, and even

> despite pneumonia,

> , are experiencing seizure free days lately.

> And ,

> too, I think. Let me add Ethan to the list.

> School started for Ethan yesterday. Even last week

> I was dreading

> the start of school, fearing the worse, since he was

> still having 2-

> 3 'freezing' episodes each day. But he hasn't had

> any either

> yesterday or today, and almost as good, he is really

> excited about

> school, dashing off to be there. That has not

> happened since he

> restarted medication in 2nd grade (3 years ago.)

> His psychologist

> believes that perhaps resumming normal activity will

> be the best

> therapy for stopping these 'psuedo seizures,' and

> perhaps he is

> right.

> Looking back, I can kind of see how these things

> started.

> Initiating the diet and weaning medicine were so

> emotionally and

> physically tormoltuous (wish I could spell) that his

> brain just sort

> of 'checked out' at times. I reinforced these

> episodes by giving in

> and not making him do the things that triggered

> them. It is

> something his brain learned to do, and they are

> completely

> subconscious. We always noticed that when he was

> feeling good and

> happy, they didn't happen. Well, now he is feeling

> good and he is

> very happy and these episodes are not occuring. I

> think the big

> difference in his emotional well-being is that he is

> off those high

> doses of medication that made everything pertaining

> to school so

> difficult. As soon as we can schedule an IEP I

> think we'll say

> thank you and so long to his full time academic aid.

> I'm sure there are parents reading this who are

> in the middle of

> great struggles. If it helps, use our stories to

> keep the hope

> alive. I know there are no guarantees in life, but

> with this diet,

> there is every reason to hope!

> Thank you everyone for your wonderful support. I

> am thinking,

> praying and hoping for the best for evey single one

> of your kids.

> Langan, enjoy that Mcs meal, and think of

> Ethan when you

> eat a fry!

> Gretchen

>

__________________________________________________

September 9, 2004

Hi Gretchen -

Hope is alive and thriving! These stories are just

incredibly inspirational to those of us who are not

yet seizure free!

How exciting for Ethan that he now looks forward to

school! I remember reading your posts last school

year where you couldn't even mention doing math

homework (am I dreaming this? Do I have the right

kid?) or it would send him into either a real or

pseudo seizure. I know you must have been dreading

the start of school - fearing the worst - certainly

not the case - sounds like he's feeling better (maybe

less anxious now that he's off meds?) And ditching

the full time aide will only make him feel that much

more relaxed and " normal " . I just think Ethan's story

is amazing.

In regards to his brain " learning " to have the pseudo

seizures - I totally agree. The brain has a funny way

of compensating when it feels overstimulated or

overwhelmed. I'm sure Ethan did " check-out " when on

high doses and thru weaning meds. School was probably

a huge stressor from all aspects - academically,

socially, emotionally, and perhaps, physically. On

the flip side, as a mom, I would have done the same

thing - first response is to take away the known

triggers. In retrospect, easy to see how reinforcing

those " seizures " were for Ethan. Think about how much

stronger Ethan will be now that he can recognize signs

of stress and coping strategies to pull him thru rough

times.

I'm just so happy that Ethan's first week is going

well and hey - if he can survive the first few days -

he'll be AOK from here on out!

Thanks for posting!

(mom to - 2.5 yrs. old - ketokid since

6/03 - med free since 3/27/04 - working on the seizure

free part but getting closer)

--- gretchen_kissock gretchen_kissock@...>

wrote:

> I've been away a week or so, and what a pleasant

> surprise I've come

> home to. I quickly scanned recent postings, and

> forgive me if I am

> missing something, but the news of our kids seems to

> be particularly

> good the last few days. Stella, Langan, and even

> despite pneumonia,

> , are experiencing seizure free days lately.

> And ,

> too, I think. Let me add Ethan to the list.

> School started for Ethan yesterday. Even last week

> I was dreading

> the start of school, fearing the worse, since he was

> still having 2-

> 3 'freezing' episodes each day. But he hasn't had

> any either

> yesterday or today, and almost as good, he is really

> excited about

> school, dashing off to be there. That has not

> happened since he

> restarted medication in 2nd grade (3 years ago.)

> His psychologist

> believes that perhaps resumming normal activity will

> be the best

> therapy for stopping these 'psuedo seizures,' and

> perhaps he is

> right.

> Looking back, I can kind of see how these things

> started.

> Initiating the diet and weaning medicine were so

> emotionally and

> physically tormoltuous (wish I could spell) that his

> brain just sort

> of 'checked out' at times. I reinforced these

> episodes by giving in

> and not making him do the things that triggered

> them. It is

> something his brain learned to do, and they are

> completely

> subconscious. We always noticed that when he was

> feeling good and

> happy, they didn't happen. Well, now he is feeling

> good and he is

> very happy and these episodes are not occuring. I

> think the big

> difference in his emotional well-being is that he is

> off those high

> doses of medication that made everything pertaining

> to school so

> difficult. As soon as we can schedule an IEP I

> think we'll say

> thank you and so long to his full time academic aid.

> I'm sure there are parents reading this who are

> in the middle of

> great struggles. If it helps, use our stories to

> keep the hope

> alive. I know there are no guarantees in life, but

> with this diet,

> there is every reason to hope!

> Thank you everyone for your wonderful support. I

> am thinking,

> praying and hoping for the best for evey single one

> of your kids.

> Langan, enjoy that Mcs meal, and think of

> Ethan when you

> eat a fry!

> Gretchen

>

__________________________________________________

September 9, 2004

Hi Gretchen, that is such wonderful news about Ethan. You must be on

cloud nine! I'm so happy for you.

I'm afraid my little Kristan had a very rough late afternoon, all

last night and earlier this morning, where she was just having

seizure after seizure every few minutes. She must have had over 30

yesterday and today is in the 30's, I was just so upset that I

stopped counting. I even tried the apple juice remedy to see if that

would stop them (I know it's for if you have high ketones, but I was

desperate and figured I have nothing to lose) and it didn't work.

She's finally doing ok now, she took her snack and is awake and

playing with her hands. I had stopped her Carnitor as it combined

with her antibiotic would give her bad diarrhea, but now I'm thinking

that maybe it was helping to control the seizures, so I gave her some

this morning and I think maybe it has kicked in and stopped the

seizures for now.

So, we're both doing better now that they have stopped and I have

stopped crying too which I hate to do in front of her, but when she

gets real bad with the seizures I can't help it.

Satnam, mom to Kristan, 21 months

Keto kid since August 2003

> I've been away a week or so, and what a pleasant surprise I've come

> home to. I quickly scanned recent postings, and forgive me if I am

> missing something, but the news of our kids seems to be

particularly

> good the last few days. Stella, Langan, and even despite

pneumonia,

> , are experiencing seizure free days lately. And ,

> too, I think. Let me add Ethan to the list.

> School started for Ethan yesterday. Even last week I was dreading

> the start of school, fearing the worse, since he was still having 2-

> 3 'freezing' episodes each day. But he hasn't had any either

> yesterday or today, and almost as good, he is really excited about

> school, dashing off to be there. That has not happened since he

> restarted medication in 2nd grade (3 years ago.) His psychologist

> believes that perhaps resumming normal activity will be the best

> therapy for stopping these 'psuedo seizures,' and perhaps he is

> right.

> Looking back, I can kind of see how these things started.

> Initiating the diet and weaning medicine were so emotionally and

> physically tormoltuous (wish I could spell) that his brain just

sort

> of 'checked out' at times. I reinforced these episodes by giving

in

> and not making him do the things that triggered them. It is

> something his brain learned to do, and they are completely

> subconscious. We always noticed that when he was feeling good and

> happy, they didn't happen. Well, now he is feeling good and he is

> very happy and these episodes are not occuring. I think the big

> difference in his emotional well-being is that he is off those high

> doses of medication that made everything pertaining to school so

> difficult. As soon as we can schedule an IEP I think we'll say

> thank you and so long to his full time academic aid.

> I'm sure there are parents reading this who are in the middle of

> great struggles. If it helps, use our stories to keep the hope

> alive. I know there are no guarantees in life, but with this diet,

> there is every reason to hope!

> Thank you everyone for your wonderful support. I am thinking,

> praying and hoping for the best for evey single one of your kids.

> Langan, enjoy that Mcs meal, and think of Ethan when you

> eat a fry!

> Gretchen

September 9, 2004

I know kids need the extra carnatine to digest the fat they are

consuming, I looked at some labs of a boy who was cheating on his diet

and his carnatine levels were way off, compared to stella who does not

cheat, it shows the difference that they use it up to help the

metabolization of the fat. Some antibiotics are not carb free

especially if it is oral liquid.

All our kids have bad days, we just need to hang in there and remember

there is some respite coming your way. I know the feeling of stopping

counting though, we would stop after 50,then after 100 too much too

often. But happy to announce Stella is on day 6 with no seizures, and

her 2nd day at school. I'm just so excited about it. Keep up the

positive attitude and give Kristan a kiss from us.

amanda

mom to stella

On Thursday, September 9, 2004, at 11:19 AM, kristansmommy wrote:

> Hi Gretchen, that is such wonderful news about Ethan. You must be on

> cloud nine! I'm so happy for you.

>

> I'm afraid my little Kristan had a very rough late afternoon, all

> last night and earlier this morning, where she was just having

> seizure after seizure every few minutes. She must have had over 30

> yesterday and today is in the 30's, I was just so upset that I

> stopped counting. I even tried the apple juice remedy to see if that

> would stop them (I know it's for if you have high ketones, but I was

> desperate and figured I have nothing to lose) and it didn't work.

> She's finally doing ok now, she took her snack and is awake and

> playing with her hands. I had stopped her Carnitor as it combined

> with her antibiotic would give her bad diarrhea, but now I'm thinking

> that maybe it was helping to control the seizures, so I gave her some

> this morning and I think maybe it has kicked in and stopped the

> seizures for now.

>

> So, we're both doing better now that they have stopped and I have

> stopped crying too which I hate to do in front of her, but when she

> gets real bad with the seizures I can't help it.

>

> Satnam, mom to Kristan, 21 months

> Keto kid since August 2003

>

> > I've been away a week or so, and what a pleasant surprise I've come

> > home to. I quickly scanned recent postings, and forgive me if I am

> > missing something, but the news of our kids seems to be

> particularly

> > good the last few days. Stella, Langan, and even despite

> pneumonia,

> > , are experiencing seizure free days lately. And ,

> > too, I think. Let me add Ethan to the list.

> > School started for Ethan yesterday. Even last week I was dreading

> > the start of school, fearing the worse, since he was still having 2-

> > 3 'freezing' episodes each day. But he hasn't had any either

> > yesterday or today, and almost as good, he is really excited about

> > school, dashing off to be there. That has not happened since he

> > restarted medication in 2nd grade (3 years ago.) His psychologist

> > believes that perhaps resumming normal activity will be the best

> > therapy for stopping these 'psuedo seizures,' and perhaps he is

> > right.

> > Looking back, I can kind of see how these things started.

> > Initiating the diet and weaning medicine were so emotionally and

> > physically tormoltuous (wish I could spell) that his brain just

> sort

> > of 'checked out' at times. I reinforced these episodes by giving

> in

> > and not making him do the things that triggered them. It is

> > something his brain learned to do, and they are completely

> > subconscious. We always noticed that when he was feeling good and

> > happy, they didn't happen. Well, now he is feeling good and he is

> > very happy and these episodes are not occuring. I think the big

> > difference in his emotional well-being is that he is off those high

> > doses of medication that made everything pertaining to school so

> > difficult. As soon as we can schedule an IEP I think we'll say

> > thank you and so long to his full time academic aid.

> > I'm sure there are parents reading this who are in the middle of

> > great struggles. If it helps, use our stories to keep the hope

> > alive. I know there are no guarantees in life, but with this diet,

> > there is every reason to hope!

> > Thank you everyone for your wonderful support. I am thinking,

> > praying and hoping for the best for evey single one of your kids.

> > Langan, enjoy that Mcs meal, and think of Ethan when you

> > eat a fry!

> > Gretchen

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

> resort! "

>

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September 9, 2004