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when is the time to go to the hospital when kyla is spilling ketones?

from my earlier post you know she is sick, and i called the doctor to

tell them she is spillin ketones (15) and they said its just because

she is sick, not to worry about it so i didn't take her she ate some

chex mix and when she goes to the bathroom i will check it again, but

i know a lot of you know about this and i am new to it, so i though i

would post (actually jodi told me to post so thanks jodi) and see what

everybodys advice is thanks in advance! stephanie kyla 4 rss

p.s. my son is healthy and is starting to have the same symptoms as

kyla and i called the doctor before they closed (he didn't run fever

until after we left the doctors office, of course) and they said he

was fine, he can fight infections kyla can't....sounds pretty bad to

me when the doctor won't prescribe anything for him because he can

fight his and she can't..see why we need another doc??

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  • 7 months later...

Have you tested Morven for ketones? Do you have ketostrips? Her blood sugar

levels can

be normal and still have large ketones. If she does have them, then she is not

getting

enough food/calories. Her brain is taking what it needs at the cost of

everything else.

Our kids do not have enough body fat which is what is then used to burn for

fuel, so the

body starts to burn muscle for protein and fuel. That is why you smell the

ketones.

Eventually her blood sugar levels will fall. She will become dehydrated, too.

It leads to a

nasty cycle. Acidosis sets in and she could start to vomit and not be able to

stop. I'm not

saying this to alarm you, but to inform you. Morven must have more calories and

build up

those stores of glycogen.

By the way, if she IS spilling moderate to large ketones, then she needs to be

in the

hospital to work out the imbalance. If you email me at magicrss @hotmail.com,

then I can

give you the whole routine. It is not a one day stay for rehydration. It

requires several

days, even more than a week. Trust me on this one. I'm an expert at this

after 17 years

of experience.

Jodi Z

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>Hi Jodie,

No I dont have ketostrips.I have mentioned this to the Docs several

times but they seem to think Im a bit paranoid.She isnt a sicky

baby.She did have reflux until she was about 7mths but she is sick

very rarely now.

I have been smelling them for months.She seems to eat a reasonable

amount(I think) but is obviously still quite small.Think I will take

her to the Docs again.They have never heard of RSS although we still

dont have a diagnosis yet.

Thanb

ks for the advice

> Have you tested Morven for ketones? Do you have ketostrips? Her

blood sugar levels can

> be normal and still have large ketones. If she does have them,

then she is not getting

> enough food/calories. Her brain is taking what it needs at the

cost of everything else.

> Our kids do not have enough body fat which is what is then used to

burn for fuel, so the

> body starts to burn muscle for protein and fuel. That is why you

smell the ketones.

>

> Eventually her blood sugar levels will fall. She will become

dehydrated, too. It leads to a

> nasty cycle. Acidosis sets in and she could start to vomit and

not be able to stop. I'm not

> saying this to alarm you, but to inform you. Morven must have

more calories and build up

> those stores of glycogen.

>

> By the way, if she IS spilling moderate to large ketones, then she

needs to be in the

> hospital to work out the imbalance. If you email me at magicrss

@hotmail.com, then I can

> give you the whole routine. It is not a one day stay for

rehydration. It requires several

> days, even more than a week. Trust me on this one. I'm an

expert at this after 17 years

> of experience.

>

> Jodi Z

>

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  • 4 weeks later...

Hi Deb

To check Liam for ketones, I just put a cotton ball in his nappy

(diaper) and squeeze some urine out of it when it gets wet onto the

ketostick.

When Liam is sick eg high temp, or not tolerating his feed< I always

check ketones first,Liam can have high ketones and a normal blood

sugar. I just know to get the glucose into him one way or another

when he has ketones because next would be a hypo.

If True has ketones when he is well, I would say he is not getting

enough calories, but it sounds like he is doing ok at home.

Hope this helps

Jody

>

> Hi...

>

> I really don't know much about it. I am wondering how you checked

for

> ketones when you had an infant. Also wondering if they are ever

there when there

> is not a known low reading. He has had ketones both times he was

in the

> hospital but never at home using the strips. I just wonder if I

am doing it

> right...is there a better time to check and so forth?

>

> thanks

>

> deb...mom to four fab adopted kiddos... (07.04.96-05.26.03)

with

> Mitochondrial Encephalomyopathy, Complex I and IV, I+III,

II+III...deb...G, 6,

> with High Functioning Autism, Hypoglycemia, Precocious Puberty

and possible

> Berardinelli-Seip syndrome...B, 4, with VERY mild Cerebral

Palsy...and True

> (born 01.18.05) with Cerebral Palsy, Myoclonus, Ulcers,

Hypoglycemia, undiagnosed

> GI problems plus severe food allergies, Plagiocephaly and

> Dysphagia....Married for 12 years to F--one swell guy!

> _www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/)

>

>

>

>

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