High ketones the culprit? to

[Guest guest]

Her ketostick was turning dark really fast. I don't think she was in

acidosis, but was thinking the ketones could be too high. We added a

Klonapin wafer a day, not much actually. I'd love to get her off the

meds, but my neuro said " She'll never get off the meds. " He also said

she was on such a low dose right now (30mgs of Topamax and 1 mg of

Klonapin a day) that he could be accused of under-medicating her. Of

course, I want her off all the meds, but one step at a time.

The hair falling out is news to me. Lily's hair is just fine, except

that she spends a fair amount of time lying down and so an area is

getting frizzled from rubbing it on the pillow. I haven't noticed any

falling out, however.

In any event, so far so good. She had a great therapy session today.

Her OT had her sitting on a chair and raised her arms above her head,

encouraging her to stand. Lily stood, all of her own, and then stayed

standing! That's a big deal around here. She did it 5 times.

Hope is still doing well.

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

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Yes, her ketones are too high if the ketostix is turning dark immediately.

Which means, if her calories are right, you could try lowering her ratio. If

she is on 4:1 you could go to 3.75:1 or we went to 3.5:1. Be sure, though, that

she is getting her fluids, as that affects ketones, too.

Personally, I would work on lowering the ratio before upping a med...but that is

always my preference. I see drugs as a last ditch effort, not the first thing

you do, unless it is an emergency.

Actually, when 's ketones got crazy high and she began seizuring, we ended

up all the way down to a 2.5:1 ratio. It took some time, first lowering a

little, then a little more, we lowered calories too....finally at 2.5:1 her

ketones are great, no seizures, and I can just tell she feels good. She was not

feeling good on high high ketones all the time. Now her ketones start out

moderate and build to high by evening.

Keep in mind, not all children even need high ketones for seizure control.

Lily sounds like she is doing well. sat, crawled, walked and talked late,

but she does them all. It just took her time. And now she is almost completely

potty-trained, which is a grand achievement for all of us! :-)

.

cchatch1402 cchatch1402@...> wrote:

Her ketostick was turning dark really fast. I don't think she was in

acidosis, but was thinking the ketones could be too high. We added a

Klonapin wafer a day, not much actually. I'd love to get her off the

meds, but my neuro said " She'll never get off the meds. " He also said

she was on such a low dose right now (30mgs of Topamax and 1 mg of

Klonapin a day) that he could be accused of under-medicating her. Of

course, I want her off all the meds, but one step at a time.

The hair falling out is news to me. Lily's hair is just fine, except

that she spends a fair amount of time lying down and so an area is

getting frizzled from rubbing it on the pillow. I haven't noticed any

falling out, however.

In any event, so far so good. She had a great therapy session today.

Her OT had her sitting on a chair and raised her arms above her head,

encouraging her to stand. Lily stood, all of her own, and then stayed

standing! That's a big deal around here. She did it 5 times.

Hope is still doing well.

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

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

As for not upping meds, I'm not ready to completely buck the neuro.

Whatever it is, it seems to be working, at least for now. We were at

3.75 and went down to 3.5. She gets plenty of fluids. She likes to

drink from her bottle, thankfully.

She has been standing from a chair, with a little assistance, of

course, which is great. I wonder if she'll just skip crawling. I

hope so, in any event, and that she continues to progress with

standing and, later, walking. My fingers are crossed, in any event.

Best to you and ,

Caitlin

[Guest guest]

Dear Caitlin

Sounds like Lily is moving, and that is great. Visually impaired kiddos don't

have that visual stimuli that gets children moving. Like seeing a toy and going

for it. Of course, auditory things help...like a ball with a bell in it, etc.

I taught visually impaired, back then it was called " blind and partially

sighted. " It was a while ago. Don't you have an early intervention person that

is a teacher with VI training? It should be provided through your intermediate

school district. Where do you live? I would insist on one that has been

trained with visually impaired.

, too, is tactilly defensive. She resists much phyical contact. I have had

to work on desensitizing her mouth before brushing her teeth, work on brushing

her hair, hugging her, etc. It was worse when she was seizuring, and now she

isn't as defensive, which is nice for everybody. For all her tactile

defensiveness, she loves to be cuddled and rocked. I have held and rocked her

more than the other four put together. Of course, much of that is because she

has been so sick.

Glad to hear Lily rolls to get around and is strong. She will not be the only

child that never crawled before walking. Mobility is so wonderful, and

especially for the visually impaired, so they can readily explore their

environment. It will be wonderful for her, and she will learn and learn as she

does.

Blessings to you and Lily. You must post her picture. I hope to get a pix of

this week to post. I had one, but she was in braids. Now her hair is

shorter, so I will redo the picture. .

cchatch1402 cchatch1402@...> wrote:

I know - but my nephew never crawled, just scooted. Funniest thing

you ever saw. And Lily rolls from her tummy to her back, both

directions. She rolls around a bit, but not end over end to get

somewhere. We tried a rolling board a bit, but she is so touch

defensive in her hands that it's hard to get her to do things with

them, other than hold her cup.

Her Early Intervention PT was fabulous. I'm trying to get her to stay

on regular insurance, but she needs a provider number, and that's

taking forever. a used to work with her on her crawl position.

Lily hates to bear weight on her arms and hands.

She is much stronger physically than you might think. she sits very

nicely, both on the floor and in a chair. She just started rising

from a chair if someone holds her arms up in the air. She does all

the pushing and weight bearing, which is great.

I'm so glad to hear about 's mobility. I'm hoping that Lily will

follow suit. Her vision is pretty impaired, but she has some, so that

could be a reason she isn't too curious and inclined to move.

As for the meds - I would love to see her off them all. I'm not

pushing it yet with the doctor because she's on such a low dose. I'd

like to see her with a really nice period of control under her belt,

then I'll raise the issue again. So far, this is her second longest

seizure free period. Her last big one was on the 11th, very small one

on the 13th. I'm keeping my fingers crossed that this lasts....

Take care!

Caitlin

>

>

> As for not upping meds, I'm not ready to completely buck the neuro.

> Whatever it is, it seems to be working, at least for now. We were

at

> 3.75 and went down to 3.5. She gets plenty of fluids. She likes

to

> drink from her bottle, thankfully.

>

> She has been standing from a chair, with a little assistance, of

> course, which is great. I wonder if she'll just skip crawling. I

> hope so, in any event, and that she continues to progress with

> standing and, later, walking. My fingers are crossed, in any event.

>

> Best to you and ,

>

> Caitlin

>

>

>

> " 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]

Lily has had a vision therapist all along, I'm not sure how much she's

helped. She still has it through the Intermediate Unit. So far, I'm

happy with them. Lily started on the 7th.

I'd be more than happy to post a picture, but I'm not sure how or

where. Any advice? And thank you for you kind thoughts. I'm praying

that she will walk one day. Her PT is convinced she will, which is

great, because she's fabulous. Lily is definitely less defensive than

she was, but is still pretty uninclined to let you touch her hands or

to hold onto anything but her bottle. She can certainly do it, and has

some pretty good fine motor skills (she used to peel her eye patch

off, nice as you please, with the most precise pincer action) but she

plain doesn't want to use those skills. We have to keep encouraging

her to do it.

Lily will tolerate being cuddled as well, and if I could have kissed

her better, she'd be fine by now. She is moving more and more,

but mostly wiggling in place or rolling. She is starting to stand,

readily, from a chair, which is a new thing, and great as well.

Of course, as soon as I make a big deal about her seizure free status,

she has an episode. On the whole, it was relatively mild ( a drop up

to 2 seconds in length, one at a time, 15 minutes apart.) I shorted

her Klonapin yesterday, and don't know if that is why it happened, but

I'm going to be more diligent. She was fine after a little nap

yesterday (gave her an extra Klonapin) and was good today. So, we

start again....

> >

> >

> > As for not upping meds, I'm not ready to completely buck the

neuro.

> > Whatever it is, it seems to be working, at least for now. We were

> at

> > 3.75 and went down to 3.5. She gets plenty of fluids. She likes

> to

> > drink from her bottle, thankfully.

> >

> > She has been standing from a chair, with a little assistance, of

> > course, which is great. I wonder if she'll just skip crawling. I

> > hope so, in any event, and that she continues to progress with

> > standing and, later, walking. My fingers are crossed, in any

event.

> >

> > Best to you and ,

> >

> > Caitlin

> >

> >

> >

> > " 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

> >

> >

> >

> >

> >

[Guest guest]

I hope Lily has the progress that has had! And if I may ask, how

do you know her ketones rise and fall with such accuracy? I use the

sticks, and Lily is almost always in the last two colors on the large

end. The numbers I read here mean nothing to me. I can only tell if

she's in large ketosis or not. The strips haven't been turning so

quickly lately, but other than that, I don't know how to fine tune

things.

Caitlin