We're back! update

[Guest guest]

Wow, after having been away for the past 6 wks. - I

was so pleased to see so many new stories! Lots of

new kiddo's on the diet. I'm trying to catch up and

learn about our new " family " members! Welcome to all

of you! And to all of you " old timers " - I've missed

you and have definitely been going into withdrawal not

being able to write and respond. Have been lurking,

however.

news. Well, overall, he's doing very well. 2

months ago, we eliminated all lactose/dairy from his

diet mainly b/c I thought he was having migraines.

Long story short, a month later, his myoclonics

started changing and I thought he was going back to

having drops. But, in retrospect, the myoclonics were

" fading " out. Haven't seen one in over 3 wks.

Hopefully, they are a thing of the past. I'm

convinced that they disappeared b/c we eliminated the

dairy/lactose. We had them for far too long for it to

be coincidence. Although, knock on wood b/c he's had

good " one week " periods w/out them. Need more data

points to be sure, I spose. Don't know what this means

as far as " diagnosis " . Wondering if he might be

lactose sensitive and that's what caused the seizure

activity in the first place?? He recently was tested

for Celiac disease but b/c he's on the diet, they were

only able to take a skin biopsy and it came back

negative meaning there is only minimal chance he has

celiac but I guess there is still the possibility of

sensitivitiy or intolerance. He hasn't had a complex

partial or day time tonic/clonic's in nearly 2 months

either. Still having occasional night time t/c's.

Usually in the early am hours and USUALLY w/barometric

pressure changes. We just started giving him

melotonin again 3 nights ago so we'll see. I'm pretty

psyched b/c is a kid who traditionally does

terrible w/changes and we've been travelling the past

6wks. staying w/different family members and he has

done incredibly well. In addition, he now goes

outside and plays and we can run errands w/out fear of

having seizures in stores which is such a stress

relief for me and his siblings. Pretty much night and

day difference.

Still concerned about his development. For those of

you who are new, is 2.5 years and

developmentally around the 12-15yr. mark. He's been

off meds since the end of March but we really haven't

seen much change w/his development. Just wondering if

this is " normal " . The biggest concern is his

" inconsistencies " . One day, he'll say a new word or

point to a picture but then the next day he won't do

it. So, am wondering if all those seizures and meds

did more harm than what I realized. The neuro's very

concerned that he's not saying more words. But,

another part of me thinks that since he was on meds

for nearly 2 yrs. maybe it will take that long to

catch up. I know all kids respond differently but for

those of you who weaned meds how quickly did you see

" noticable " changes in development?

On another note - , so glad to hear that Langan

is her old happy self again. I know you must be going

crazy trying to figure out what to do next for you -

last I read, she was doing OK at the 3.1 ratio. Are

you still there? Are the Drs. still concerned about

acidosis at that ratio? If not, why not just stay

where you are at for now, although she is still having

seizures they are more controlled than while she was

on meds, right? I just know you are dreading having

to go back to medication. UGHHH.... I've really

missed hearing more about her on a daily basis.

, I love success stories and it sounds like

is one of them. I can only imagine her

excitement to be able to go away to camp and eat

" regular " food. It must be so much fun for all of you

to enjoy food w/out weighing! Glad to hear her wean

was successful. YEAH!

Gretchen, I've been wondering about you too. It

sounds like Ethan is doing quite well. I had

remembered that school work really stressed him and

often resulted in seizures so wasn't that surprised

the Dr.s think his seizures are of the pseudo variety.

Maybe counseling will help him even more. Love those

nonintrusive treatment options. Your optimism will

certainly be to his advantage. I agree w/, it's

hard enough dealing w/a two year old on the diet -

throw in raging hormones and school work and I think

I'd lose my cookies! Ha. You are doing such an

amazing job w/him. Thanks for updating and glad to

see you've returned.

I could continue to go down the list but I have a

little one who is sick so must get going. Just wanted

to say hello and let everyone know we're back. Will

look forward to catching up.

(mom to - 2.5 yrs. old - Ketokid since

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

seizure free but tons better than before)

__________________________________________________

[Guest guest]

-

It's really good to hear that coop is doing so well. Thanks for the

update and glad to see your back.

, mom to Ethan

2/2003-4/2004

We're back! update

Wow, after having been away for the past 6 wks. - I

was so pleased to see so many new stories! Lots of

new kiddo's on the diet. I'm trying to catch up and

learn about our new " family " members! Welcome to all

of you! And to all of you " old timers " - I've missed

you and have definitely been going into withdrawal not

being able to write and respond. Have been lurking,

however.

news. Well, overall, he's doing very well. 2

months ago, we eliminated all lactose/dairy from his

diet mainly b/c I thought he was having migraines.

Long story short, a month later, his myoclonics

started changing and I thought he was going back to

having drops. But, in retrospect, the myoclonics were

" fading " out. Haven't seen one in over 3 wks.

Hopefully, they are a thing of the past. I'm

convinced that they disappeared b/c we eliminated the

dairy/lactose. We had them for far too long for it to

be coincidence. Although, knock on wood b/c he's had

good " one week " periods w/out them. Need more data

points to be sure, I spose. Don't know what this means

as far as " diagnosis " . Wondering if he might be

lactose sensitive and that's what caused the seizure

activity in the first place?? He recently was tested

for Celiac disease but b/c he's on the diet, they were

only able to take a skin biopsy and it came back

negative meaning there is only minimal chance he has

celiac but I guess there is still the possibility of

sensitivitiy or intolerance. He hasn't had a complex

partial or day time tonic/clonic's in nearly 2 months

either. Still having occasional night time t/c's.

Usually in the early am hours and USUALLY w/barometric

pressure changes. We just started giving him

melotonin again 3 nights ago so we'll see. I'm pretty

psyched b/c is a kid who traditionally does

terrible w/changes and we've been travelling the past

6wks. staying w/different family members and he has

done incredibly well. In addition, he now goes

outside and plays and we can run errands w/out fear of

having seizures in stores which is such a stress

relief for me and his siblings. Pretty much night and

day difference.

Still concerned about his development. For those of

you who are new, is 2.5 years and

developmentally around the 12-15yr. mark. He's been

off meds since the end of March but we really haven't

seen much change w/his development. Just wondering if

this is " normal " . The biggest concern is his

" inconsistencies " . One day, he'll say a new word or

point to a picture but then the next day he won't do

it. So, am wondering if all those seizures and meds

did more harm than what I realized. The neuro's very

concerned that he's not saying more words. But,

another part of me thinks that since he was on meds

for nearly 2 yrs. maybe it will take that long to

catch up. I know all kids respond differently but for

those of you who weaned meds how quickly did you see

" noticable " changes in development?

On another note - , so glad to hear that Langan

is her old happy self again. I know you must be going

crazy trying to figure out what to do next for you -

last I read, she was doing OK at the 3.1 ratio. Are

you still there? Are the Drs. still concerned about

acidosis at that ratio? If not, why not just stay

where you are at for now, although she is still having

seizures they are more controlled than while she was

on meds, right? I just know you are dreading having

to go back to medication. UGHHH.... I've really

missed hearing more about her on a daily basis.

, I love success stories and it sounds like

is one of them. I can only imagine her

excitement to be able to go away to camp and eat

" regular " food. It must be so much fun for all of you

to enjoy food w/out weighing! Glad to hear her wean

was successful. YEAH!

Gretchen, I've been wondering about you too. It

sounds like Ethan is doing quite well. I had

remembered that school work really stressed him and

often resulted in seizures so wasn't that surprised

the Dr.s think his seizures are of the pseudo variety.

Maybe counseling will help him even more. Love those

nonintrusive treatment options. Your optimism will

certainly be to his advantage. I agree w/, it's

hard enough dealing w/a two year old on the diet -

throw in raging hormones and school work and I think

I'd lose my cookies! Ha. You are doing such an

amazing job w/him. Thanks for updating and glad to

see you've returned.

I could continue to go down the list but I have a

little one who is sick so must get going. Just wanted

to say hello and let everyone know we're back. Will

look forward to catching up.

(mom to - 2.5 yrs. old - Ketokid since

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

seizure free but tons better than before)

__________________________________________________

[Guest guest]

,

I am sooooo happy to hear that is doing so well. I am

thrilled for you! I bet that, with some time away from those nasty

szs, his development will pick up before you know it. You know these

kids do things on THEIR schedules and not ours. Sigh....

As for Langan, she is doing well on the 3:1 except for when she falls

asleep. Then all hell breaks loose. And we can't do anything with

the ratio or even the calories b/c of the acidosis. So we are

reluctantly trying trileptal. I hate to do it, but I hate watching

her go through hell every night even more. On the meds pre-keto, she

was averaging a seizure every 4-10 days. Every night is just

unacceptable. On the bright side, she is getting so strong it is

amazing. I think treating the acidosis has made a world of

difference for her. Her PT has been sick so she hasn't seen her in 2

weeks. She was stunned at the difference- at how strong Langan has

gotten and at how happy she is. It made me cry to watch the surprise

on her face. So we are thrilled with that. She's not speeding along

developmentally, either, but she is moving forward slowly. And, even

more importantly, she is just so happy. I can make her giggle at

will now- something we didn't see for so many months that I hate to

think about it. So we'll try the meds- hopefully a very small dose-

and see what happens. I'll keep you posted!

Hugs to big boy ! I am so glad he had such a great vacation!!

, mom to Langan

> Wow, after having been away for the past 6 wks. - I

> was so pleased to see so many new stories! Lots of

> new kiddo's on the diet. I'm trying to catch up and

> learn about our new " family " members! Welcome to all

> of you! And to all of you " old timers " - I've missed

> you and have definitely been going into withdrawal not

> being able to write and respond. Have been lurking,

> however.

>

> news. Well, overall, he's doing very well. 2

> months ago, we eliminated all lactose/dairy from his

> diet mainly b/c I thought he was having migraines.

> Long story short, a month later, his myoclonics

> started changing and I thought he was going back to

> having drops. But, in retrospect, the myoclonics were

> " fading " out. Haven't seen one in over 3 wks.

> Hopefully, they are a thing of the past. I'm

> convinced that they disappeared b/c we eliminated the

> dairy/lactose. We had them for far too long for it to

> be coincidence. Although, knock on wood b/c he's had

> good " one week " periods w/out them. Need more data

> points to be sure, I spose. Don't know what this means

> as far as " diagnosis " . Wondering if he might be

> lactose sensitive and that's what caused the seizure

> activity in the first place?? He recently was tested

> for Celiac disease but b/c he's on the diet, they were

> only able to take a skin biopsy and it came back

> negative meaning there is only minimal chance he has

> celiac but I guess there is still the possibility of

> sensitivitiy or intolerance. He hasn't had a complex

> partial or day time tonic/clonic's in nearly 2 months

> either. Still having occasional night time t/c's.

> Usually in the early am hours and USUALLY w/barometric

> pressure changes. We just started giving him

> melotonin again 3 nights ago so we'll see. I'm pretty

> psyched b/c is a kid who traditionally does

> terrible w/changes and we've been travelling the past

> 6wks. staying w/different family members and he has

> done incredibly well. In addition, he now goes

> outside and plays and we can run errands w/out fear of

> having seizures in stores which is such a stress

> relief for me and his siblings. Pretty much night and

> day difference.

>

> Still concerned about his development. For those of

> you who are new, is 2.5 years and

> developmentally around the 12-15yr. mark. He's been

> off meds since the end of March but we really haven't

> seen much change w/his development. Just wondering if

> this is " normal " . The biggest concern is his

> " inconsistencies " . One day, he'll say a new word or

> point to a picture but then the next day he won't do

> it. So, am wondering if all those seizures and meds

> did more harm than what I realized. The neuro's very

> concerned that he's not saying more words. But,

> another part of me thinks that since he was on meds

> for nearly 2 yrs. maybe it will take that long to

> catch up. I know all kids respond differently but for

> those of you who weaned meds how quickly did you see

> " noticable " changes in development?

>

> On another note - , so glad to hear that Langan

> is her old happy self again. I know you must be going

> crazy trying to figure out what to do next for you -

> last I read, she was doing OK at the 3.1 ratio. Are

> you still there? Are the Drs. still concerned about

> acidosis at that ratio? If not, why not just stay

> where you are at for now, although she is still having

> seizures they are more controlled than while she was

> on meds, right? I just know you are dreading having

> to go back to medication. UGHHH.... I've really

> missed hearing more about her on a daily basis.

>

> , I love success stories and it sounds like

> is one of them. I can only imagine her

> excitement to be able to go away to camp and eat

> " regular " food. It must be so much fun for all of you

> to enjoy food w/out weighing! Glad to hear her wean

> was successful. YEAH!

>

> Gretchen, I've been wondering about you too. It

> sounds like Ethan is doing quite well. I had

> remembered that school work really stressed him and

> often resulted in seizures so wasn't that surprised

> the Dr.s think his seizures are of the pseudo variety.

> Maybe counseling will help him even more. Love those

> nonintrusive treatment options. Your optimism will

> certainly be to his advantage. I agree w/, it's

> hard enough dealing w/a two year old on the diet -

> throw in raging hormones and school work and I think

> I'd lose my cookies! Ha. You are doing such an

> amazing job w/him. Thanks for updating and glad to

> see you've returned.

>

> I could continue to go down the list but I have a

> little one who is sick so must get going. Just wanted

> to say hello and let everyone know we're back. Will

> look forward to catching up.

>

> (mom to - 2.5 yrs. old - Ketokid since

> 6/03 - med free since 3/27/04 - working on becoming

> seizure free but tons better than before)

>

>

>

> __________________________________________________

>

[Guest guest]

Hi ,

It's great to have you back. It's even greater to hear how well

is doing. I wouldn't worry too much about the lack of

speech. He is still so young, and he has been through so much.

Did I understand correctly that you are thinking perhaps all his

seziures were due to a lactose intolerance? Is there a way to find

out, or would he have to go off the diet (or at least to a lower

ratio).

Sometimes I wonder if Ethan's bad seizure years were due to

medication. The doctor feels the meds made his seizures worse, but

I wonder, did the meds cause the seizures. He started taking

depakote again at age 7 because he had a somewhat abnormal EEG--

slight abnormalities. Our doctor at the time put him on depakote as

a preventative, even though he hadn't had an actual seizure in over

2 years. Well, we can't go backwards; my main emotion is relief

that is could be something that simple and easy to correct. But I

will always wonder. I'm so thankful for this diet which gave us the

courage to take him off medication.

Sometime we'll have to trade travel-on-keto stories. My travels

this summer have been both up and down. But when I think back to one

month after the diet, and trying to take Ethan on a picnic (away

from home for 2 hours) and had such disaserous results, I marvel at

the distances we have traveled this summer. There was a time when I

thought we would never be able to be away form home for over 2 hours

while he was on this diet (with the exception of school which is

only two blocks away.)

Well, glad to have you back!

Gretchen

> Wow, after having been away for the past 6 wks. - I

> was so pleased to see so many new stories! Lots of

> new kiddo's on the diet. I'm trying to catch up and

> learn about our new " family " members! Welcome to all

> of you! And to all of you " old timers " - I've missed

> you and have definitely been going into withdrawal not

> being able to write and respond. Have been lurking,

> however.

>

> news. Well, overall, he's doing very well. 2

> months ago, we eliminated all lactose/dairy from his

> diet mainly b/c I thought he was having migraines.

> Long story short, a month later, his myoclonics

> started changing and I thought he was going back to

> having drops. But, in retrospect, the myoclonics were

> " fading " out. Haven't seen one in over 3 wks.

> Hopefully, they are a thing of the past. I'm

> convinced that they disappeared b/c we eliminated the

> dairy/lactose. We had them for far too long for it to

> be coincidence. Although, knock on wood b/c he's had

> good " one week " periods w/out them. Need more data

> points to be sure, I spose. Don't know what this means

> as far as " diagnosis " . Wondering if he might be

> lactose sensitive and that's what caused the seizure

> activity in the first place?? He recently was tested

> for Celiac disease but b/c he's on the diet, they were

> only able to take a skin biopsy and it came back

> negative meaning there is only minimal chance he has

> celiac but I guess there is still the possibility of

> sensitivitiy or intolerance. He hasn't had a complex

> partial or day time tonic/clonic's in nearly 2 months

> either. Still having occasional night time t/c's.

> Usually in the early am hours and USUALLY w/barometric

> pressure changes. We just started giving him

> melotonin again 3 nights ago so we'll see. I'm pretty

> psyched b/c is a kid who traditionally does

> terrible w/changes and we've been travelling the past

> 6wks. staying w/different family members and he has

> done incredibly well. In addition, he now goes

> outside and plays and we can run errands w/out fear of

> having seizures in stores which is such a stress

> relief for me and his siblings. Pretty much night and

> day difference.

>

> Still concerned about his development. For those of

> you who are new, is 2.5 years and

> developmentally around the 12-15yr. mark. He's been

> off meds since the end of March but we really haven't

> seen much change w/his development. Just wondering if

> this is " normal " . The biggest concern is his

> " inconsistencies " . One day, he'll say a new word or

> point to a picture but then the next day he won't do

> it. So, am wondering if all those seizures and meds

> did more harm than what I realized. The neuro's very

> concerned that he's not saying more words. But,

> another part of me thinks that since he was on meds

> for nearly 2 yrs. maybe it will take that long to

> catch up. I know all kids respond differently but for

> those of you who weaned meds how quickly did you see

> " noticable " changes in development?

>

> On another note - , so glad to hear that Langan

> is her old happy self again. I know you must be going

> crazy trying to figure out what to do next for you -

> last I read, she was doing OK at the 3.1 ratio. Are

> you still there? Are the Drs. still concerned about

> acidosis at that ratio? If not, why not just stay

> where you are at for now, although she is still having

> seizures they are more controlled than while she was

> on meds, right? I just know you are dreading having

> to go back to medication. UGHHH.... I've really

> missed hearing more about her on a daily basis.

>

> , I love success stories and it sounds like

> is one of them. I can only imagine her

> excitement to be able to go away to camp and eat

> " regular " food. It must be so much fun for all of you

> to enjoy food w/out weighing! Glad to hear her wean

> was successful. YEAH!

>

> Gretchen, I've been wondering about you too. It

> sounds like Ethan is doing quite well. I had

> remembered that school work really stressed him and

> often resulted in seizures so wasn't that surprised

> the Dr.s think his seizures are of the pseudo variety.

> Maybe counseling will help him even more. Love those

> nonintrusive treatment options. Your optimism will

> certainly be to his advantage. I agree w/, it's

> hard enough dealing w/a two year old on the diet -

> throw in raging hormones and school work and I think

> I'd lose my cookies! Ha. You are doing such an

> amazing job w/him. Thanks for updating and glad to

> see you've returned.

>

> I could continue to go down the list but I have a

> little one who is sick so must get going. Just wanted

> to say hello and let everyone know we're back. Will

> look forward to catching up.

>

> (mom to - 2.5 yrs. old - Ketokid since

> 6/03 - med free since 3/27/04 - working on becoming

> seizure free but tons better than before)

>

>

>

> __________________________________________________

>