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

----- Original Message -----
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
> 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.

I know we've discussed LCFA's a number of times before here on the lists
(been a while though) and it's always interesting to me. Due in part to the
fact that we uses supplements on Alex and have for years.

The EFA (essential fatty acids) product Alex uses contains:
Polyunstaturated fat
Omega-3
Omega-6
Omega-9
Gamma-Linolencic Acid
It's an organic flax seed oil/borage seed oil based EFA.
It's a New Vision product (direct marketing-Jim became a dristributor so we
can get the stuff cheaper). Jim's more "up" on the specifics of these things
than I am as a rule.
Alex has been on this for 4-5 yrs now I think and both Jim and I feel that
Alex DID have some areas of improvement within 6 months of starting it.

This is just one of the daily doses of herbs/supplements he receives.

When ever we've added a "new" item to regime (started with some things when
he was 2-3 yrs old--still no Internet, still twas not invented) we've only
added ONE and then watched for 3 months or so to get a feel for it's
usefullness or any perceived problems.
*note to parents: you have to be very vigilent when trying something on your
child. To start with Jim or I have always taken it months prior to Alex,
then we give it to him in very low doses, the up it if deemed a good idea
and discontinue/continue as decided. It's hard to "talk with your doctor"
about supplements as some don't believe in them at all. We were fortunate
that Alex's grandfather is a Dr who's always been a bit "out there" and 16
yrs ago it was a huge help because of the lack of support groups/no Internet
resourses.

Something that I have an issue with is drs saying that lab evaluations of
our child's blood doesn't show a deficiency in ___________ (fill in the
blank, thyroid/minerals/vitamins etc). To start with, many AREN'T lab values
in the pediatric form---they're for adults. Then you add in the EACH person
as an individual---REGARDLESS  of trisomy or not and has a body that
functions differently than the next person. Add in the trisomy factor and
how the heck can we ever know for sure?????????? It get very frustrated by
that.

In infancy Alex tested "normal" for thyroid but was "clinically" diagnosed
(had physical symptoms) as hypothyroid. The Dr said if he is and we don't
treat him it can cause MR (something that affects hypothyroid infants) but
if we treat him and doesn't need it--no harm done. He was on thyroid for a
few yrs.

 An example of different bodies: an antihystemine that works well for me
with no side effects puts my mother to sleep and doens't help her allergies
hardly at all. Different body chemistry at work!

Five yrs ago Alex was diagnosed as growth hormone deficient (GHD) and began
Growth Hormone Therapy (GHT). The old timers on the list remember
(nightmares I'm sure) my indecision on what to do. Karen finally played
Devils Advocate and we hit every possible pro/con of doing the GHT. For
almost 4 yrs Alex was on the GHT but the MOST interesting thing was how his
skills/abilities jumped in the first 3 months. Both his reg ed and spec ed
teachers separately asked me "What are you doing with Alex? His
reading/comprehension etc ability has jumped?". But the ped endo claimed the
GHT had nothing to do with it. Yet other tri-parents have seen the same
thing and even after sharing that with him he remained unconvinced and said
that GHT don't help the brain. To which I say DUH, if you aren't "growing"
properly because of a deficiency then how can you say it DOESN'T affect the
brain? It makes no logical sense to me.

We've done a number of "unconventional" things to aid in Alex's growth:
mental, physical, emotional, psychological etc. Started with an infant
stimulation program to 'grow' as many brain pathways as we could to using
movement therapy and on and on and on. All without the benefit of the
Internet or other parents in the same boat for those first 10 yrs. It was a
bit more "challenging" in the olden days.  LOL   Heck, the geneticist told
us Alex was "the only one in the world". Boy did my world expand drastically
when we got the Internet hook up here at home!

I have a feeling this thread is going to get fun!!!!! lol

Michelle mom to Alex (16, partial trisomy 14 mosaic) and Molly (12)
MichiganUSA


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

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