[tri-med] Re: [tri-family] Re: Vent Tubes & Adnoidectomy

----- Original Message ----- 
From: "Fawna"
> We have a strange phenomenon here.  Remember how Philina lost the ability
to say the gutteral letter "D" sound after her adnoidectomy at age 4?  Well,
post code blues, and her symbolic rebirth post "the cardiac surgury from
hell", she can now say "d" sounds again.  Your guess is as good as mine, but
she is getting Efalex now, and she wasn't then....

Could the codes and intubations have caused any scarring of the soft palate?
Alex has learnt to "handle" his and can make gutteral sounds, its just hard
for him and he gets very nasally and unclear when he's tired.

But I also wouldn't put anything past the emazing Efalex. Something that I
didn't mention.

Debbie, you will need to ask your pediatrician about Efalex because I
wouldn't be giving Efalex to any baby under 12 months without a doctors
permission (and I mean Efalex brand) because it contains fish oil. But there
are alternatives that you could give that don't contain fish products.

Efalex is the brand name of a supplement that is essentially a mix of Omega
3's, 6's and 9's. Or in other words long chain fatty acids. LCFA's are known
by the medical profession to aid in the growth and development of the
nervous system. In fact its so well accepted that manufacturers are now
adding LCFA's to baby formula. LCFA's are given to older children to treat
for such things as ADD, ADDHD, dyslexia and all the forms of praxis.

I discovered LCFA's when Alex was about 2 from lurking on the CAPD list. I
researched it and decided that the medical research was legit (in my mind)
and started giving it to him in the form of Efalex (that brand is no longer
available in the US I believe but is here).

Six months after I started giving it to him my mute child started to try and
talk. Coincidence? Maybe. Even now though whenever I stop the Efalex or run
out (its not cheap so I am not always quick a getting a new bottle) Alex's
aides, without knowing its been stopped, start to comment that Alex is less
focussed at school and his speech deteriorates. Thats reason enough to keep
me giving it to him.

The best source of Omega's are oily fish, but as I said I wouldn't be giving
concentrated amounts of fish to a baby under 12 months because of potential
allergies without a doctors permission. There are however omega supplements
that are plant based eg flax seed. It takes a few months to build up levels
but in my humble opinion its safe and works.

If you want to read more about it - look on Amazon under Dr. Jacqueline
Stordy, a UK doctor who did the first research and under treatments for
Apraxia. LCFA's advocates even have a list on Yahoo.

There are a few of us on the list that use it - and believe in it. I have
been criticised by some folk for my advoacy of Efalex, especially in the
early days. In fact someone from the registry really gave me a hard time
about telling other parents. But it is something to consider and the
research has been on going and positive. As I said, the research in the last
few years became so compelling that they do add it to baby formulas now, I
just got on the wagon before it became a popular one :-))

Perhaps parents would enjoy their children more if they stopped to realize
that the film of childhood can never be run through for a second showing.
  -- Evelyn Nown

Keep Looking For Rainbows!!
Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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