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I would do the ketostrips before going to the doc. Sometimes its

nice to go to the doc with " proof " so you have some ammunition to

fight with. Keep us posted.

- H

> >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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  • 3 weeks later...

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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