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Re: Acidosis, until which ratio??/ to Caitlin

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Hi ! Lily just turned 3 on the 17th of August. She's a total

doll baby. I was typing a reply to one of your posts last night and

something happened to the post. I didn't have the energy to re-type

it. Basically I was saying that your experience with the diet sounded

like mine. Lily has been a bit better the last couple days or so.

She had a large seizure episode on Saturday, but Monday's was so brief

it's like it didn't happen. She was clear today, which was nice. We

leave tomorrow for Hilton Head to my sister in law's wedding. Yikes!

that's a huge trip from PA.

Best,

Caitlin

> > Rhonda,

> >

> > I was wondering that too but when I asked neuro in hospital about

> that, they said " no, it is not possible he's too big now,he's 6 " but

> he was intolerant when he was little....

> > Could I check this by myself?

> >

> > Thanks

> >

> > Carolyn

> >

> >

> > Re: Acidosis, until which ratio??

> >

> > Saro,

> >

> > I don't receive any more answer back about acedosis...it's a

> pity because

> > I feel very alone.

> >

> > aël is under trileptal at night,that's all.

> > and valium intra rectal some night.

> >

> > He's limit to vomit but he keep meals today....I do 2.1 ratio

> but

> > everytime I put cream on his tongue he's nearly vomits...

> > He's still very white but no dehydrated, I think...

> > Thank you

> >

> > Carolyn, aël's mum 6 on the keto diet since end of july

> >

> >

> >

> >

> >

> > " 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 (AT) yahoogroups (DOT)

> com

> >

> >

> >

> >

> >

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Trips are a challenge on keto. I have yet to do a big one, but have something

planned for next month. Lily sounds so sweet. Dear, just like her name. Hope

you have a great time! .

cchatch1402 cchatch1402@...> wrote:Hi ! Lily just turned 3 on the

17th of August. She's a total

doll baby. I was typing a reply to one of your posts last night and

something happened to the post. I didn't have the energy to re-type

it. Basically I was saying that your experience with the diet sounded

like mine. Lily has been a bit better the last couple days or so.

She had a large seizure episode on Saturday, but Monday's was so brief

it's like it didn't happen. She was clear today, which was nice. We

leave tomorrow for Hilton Head to my sister in law's wedding. Yikes!

that's a huge trip from PA.

Best,

Caitlin

> > Rhonda,

> >

> > I was wondering that too but when I asked neuro in hospital about

> that, they said " no, it is not possible he's too big now,he's 6 " but

> he was intolerant when he was little....

> > Could I check this by myself?

> >

> > Thanks

> >

> > Carolyn

> >

> >

> > Re: Acidosis, until which ratio??

> >

> > Saro,

> >

> > I don't receive any more answer back about acedosis...it's a

> pity because

> > I feel very alone.

> >

> > aël is under trileptal at night,that's all.

> > and valium intra rectal some night.

> >

> > He's limit to vomit but he keep meals today....I do 2.1 ratio

> but

> > everytime I put cream on his tongue he's nearly vomits...

> > He's still very white but no dehydrated, I think...

> > Thank you

> >

> > Carolyn, aël's mum 6 on the keto diet since end of july

> >

> >

> >

> >

> >

> > " 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 (AT) yahoogroups (DOT)

> com

> >

> >

> >

> >

> >

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  • 2 weeks later...

Dear Caitlin

Thanks for asking. She is doing great! No seizures in 15 days. And, it may be

that the magnesium I added is making the constipation a thing of the past. And,

she is asking to go in the toilet, two days in a row, which is a big deal for

her. She is five, but was not reliably potty trained until keto. But the big

hold up was pooping... and she was constipated, so no regularity to work with.

Maybe this is the breakthrough we have needed.

The hard part was that today I really had to cut her hair. It was almost to her

waist and I braided it everyday, almost. But it has thinned and especially is

thin on top and at her forehead. I heard that some children lose hair on this

diet. Oh, well. I cut it to her shoulders and even the barrettes seemed harsh

on hair that is falling out, but had the clippy-dos from her younger years

tucked away and they seem to work. It was a hard moment, but she looks fine and

doesn't need any stress on the hair that is left. And it doesn't seem so

noticeable. I am supplementing with biotin and selenium in hopes that the hair

will return.............

Anyway, a big trip for Lily, and she did well. I don't think trips are easy on

children with seizures, so that is great she did as well as she did! Why did

you lower her ratio? Was she producing too high ketones? You mentioned

concentrated urine. Does she have a set fluid intake that she keeps? has

gone from 4:1 to 2.5:1 and seems to be doing ever so well on the 2.5:1. Lower

calories, too, now, but no weight loss so far. We go for bloodwork tomorrow.

Bed is calling. Good to hear you had a good trip and that Lily did so well.

Blessings......, 's mum

cchatch1402 cchatch1402@...> wrote:

Thanks - Lily did great on the trip. No seizures since the 13th and

that was a super small flurry - only 2 drops. The last big one was on

the 11th. I dropped her ratio a tad and we upped her Klonapin a bit.

She's now on .5 mg a day.

How is ?

Caitlin

> > > Rhonda,

> > >

> > > I was wondering that too but when I asked neuro in hospital

about

> > that, they said " no, it is not possible he's too big now,he's 6 "

but

> > he was intolerant when he was little....

> > > Could I check this by myself?

> > >

> > > Thanks

> > >

> > > Carolyn

> > >

> > >

> > > Re: Acidosis, until which ratio??

> > >

> > > Saro,

> > >

> > > I don't receive any more answer back about acedosis...it's a

> > pity because

> > > I feel very alone.

> > >

> > > aël is under trileptal at night,that's all.

> > > and valium intra rectal some night.

> > >

> > > He's limit to vomit but he keep meals today....I do 2.1

ratio

> > but

> > > everytime I put cream on his tongue he's nearly vomits...

> > > He's still very white but no dehydrated, I think...

> > > Thank you

> > >

> > > Carolyn, aël's mum 6 on the keto diet since end of

july

> > >

> > >

> > >

> > >

> > >

> > > " 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 (AT) yahoogroups (DOT)

com

> > > Unsubscribe:

ketogenic-unsubscribe (AT) yahoogroups (DOT)

> > com

> > >

> > >

> > >

> > >

> > >

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Caitlin... if acidosis was the cause of the seizures, the lowered ratio may do

the trick without the increase in meds. You may want to try that first, then if

need be you could increase the med. Just an idea. Lowering the ratio made a

world of difference for dear . .

cchatch1402 cchatch1402@...> wrote:Thanks - Lily did great on the trip.

No seizures since the 13th and

that was a super small flurry - only 2 drops. The last big one was on

the 11th. I dropped her ratio a tad and we upped her Klonapin a bit.

She's now on .5 mg a day.

How is ?

Caitlin

> > > Rhonda,

> > >

> > > I was wondering that too but when I asked neuro in hospital

about

> > that, they said " no, it is not possible he's too big now,he's 6 "

but

> > he was intolerant when he was little....

> > > Could I check this by myself?

> > >

> > > Thanks

> > >

> > > Carolyn

> > >

> > >

> > > Re: Acidosis, until which ratio??

> > >

> > > Saro,

> > >

> > > I don't receive any more answer back about acedosis...it's a

> > pity because

> > > I feel very alone.

> > >

> > > aël is under trileptal at night,that's all.

> > > and valium intra rectal some night.

> > >

> > > He's limit to vomit but he keep meals today....I do 2.1

ratio

> > but

> > > everytime I put cream on his tongue he's nearly vomits...

> > > He's still very white but no dehydrated, I think...

> > > Thank you

> > >

> > > Carolyn, aël's mum 6 on the keto diet since end of

july

> > >

> > >

> > >

> > >

> > >

> > > " 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 (AT) yahoogroups (DOT)

com

> > > Unsubscribe:

ketogenic-unsubscribe (AT) yahoogroups (DOT)

> > com

> > >

> > >

> > >

> > >

> > >

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