Re: fatty oxidation disorder?Bill

[Guest guest]

Thanks, Bill - I agree and my gut tells me I should

reduce the ratio. Just scared to do so.

--- Bill Barber torontobarber@...> wrote:

> It sounds like something is seriously wrong and

> changes are needed

> sooner rather than later. Those symptoms along with

> low cholesterol are

> not normal on the diet. I would suggest going to

> 2.5:1 as suggested and

> look for improvements. You are at least getting some

> information about

> where to look for revisions to the diet.

>

> Bill

>

> michelle paulson wrote:

> > Hi gang-

> > Well... got some bloodwork back today -

> cholesterol

> > came back way low again which sends up red flags.

> His

> > numbers were mostly in the 20's. Ped. and

> diatician

> > are leaning toward a fatty oxidation disorder. My

> > dietician has recommended cutting the ratio from

> 3.5:1

> > to 2.5:1 to see how does. She said that

> only

> > one time has she seen regression on the diet and

> this

> > child had the same symptoms - lethargy that didn't

> go

> > away, uncoordination, no smiles, regression in

> speech,

> > and cognitive delays. Apparently they stuck to

> the

> > diet for 3 months but they could never stabilize

> > ketones and the side affects continued. Once they

> > discontinued the diet - symptoms went away. The

> > dietician didn't know what happened as far as

> seizure

> > control as the family left the clinic. She also

> said

> > that if is not digesting fat properly, I

> should

> > see a difference as we wean.

> >

> > They are scheduling an apt. w/an endocrinologist

> for

> > some time after the new year to test for a fatty

> > oxidation disorder.

> >

> > So she has suggested going from 3.5:1 to 2.5:1 -

> do

> > you think this is OK? Should I go ahead and do it

> > before we leave for a 2 wk. vacation or wait til

> we

> > get back? If he had a fatty oxidation disorder

> does

> > that mean the diet isn't working at all? Might he

> > even do better seizure wise w/a lower ratio or

> should

> > I just stay put until after we get back from

> > travelling? I'm so torn w/what to do. I don't

> care

> > either way but I just want to help him. I haven't

> > even had time to look up fatty oxidation disorders

> - I

> > imagine since it's a metabolic disorder it's not

> going

> > to be good. UGHhhh.....

> >

> > Thanks in advance for your suggestions/advice!

> >

> >

> > __________________________________________________

> >