Re: Re: FGF - Dr. Aguilar

[Guest guest]

Joyce, he stated that Adam was young and mildly impaired & he also pulled up

many brain EEG readouts on his computer (Adam's) as we talked. He would

point out areas that were showing immaturity and then he was more specific

like:

" the visual evoked potentials showed asymmetries in temporal areas and in

minor level in parietal regions "

" The frequency analysis showed asymmetry in delta and theta bands with

excess in right central and temporal areas. "

" The monopolar EEG showed no paroxysmal activity, only slow activity mainly

in parietal regions. "

We also received a physical therapist report on Adam's speech, movement (in

Spanish)

that placed his hand coordination at 6 years\ general coord. at 7 years,

equilibrium at

5 years/and spacial organization at 6 years.

I do not know if all of this is significant. I do know how impaired my son

is.

ADAM IS 10 YEARS OLD AND HAS PDD NOS. Joyce, that's about it.

We contacted this doctor's nephew at : Chichava@...

Through internet, we received medical history applications and instructions

on how to see the doctor. Dr. Aguilar also has research published on

fibroblast Growth Factor and Down's syndrome children. He also has papers

presented at the 10th World Congress of the International Association for

the Scientific Study of Intellectual Disabilities, Helsinki, Finland, July

1995. I also read research from " Recent

Advances in Human Neurophysiology, March 1998, Okazaki, Japan. I read and

copied these studies from the doctor's Web site. His office is called:

IINEDEC, Instituto de Investigaciones en Neuroplasticidad y Desarrollo

Celular A.C. - which I believe means:

Institute of Research in Neuroplasticity and Cellular Development A.C.

website: www.iinedec.org

I have no hesitation to share information about my son if it can help

someone else's child. Best wishes.

Aly

[ ] re: ADHD

> >

> >

> > >

> > > Toxic metals, PCB's and other persistant enviornmental toxins are all

> > > probably related. I would detox/chelate if my kid was ADHD.

> > > Beverly

> > > ***************

> > >

> > > PCBs and pesticides(both organochlorine and organophosphate)

are

> > > documented to have similar effects to toxic metals in this regard. My

> > > web page also has documentation on these. .../pesticides.html

> > > and .../endocrin.html

> > > Bernie

> > >

> > >

> > > =======================================================

> > >

[Guest guest]

I will also chime in and say that it's libel to state, without grounds, that

a doctor's treatment has resulted in injury to a child. If such a claim is

made, and indeed is valid, we need to be able to check it out. Otherwise it's

slanderous gossip.

[Guest guest]

Ruth,

In regards to your statement suggesting that parents have not researched

with their neurologist the claim that a mother reported to you, I have

indeed. I found out on 5/25/01 that this alleged encephalitis claim was

unbeknownst to the Department of Neurology at Kaiser in San Diego (Vanderver

location). I asked two of our pediatrician friends and one family

practitioner to investigate further. They have not heard of any such

incident themselves. I know another family spoke to their UCSD neurologist

and the physician was unaware also.

Your case would be much stronger if you would state a name for the

neurologist or the hospital where it took place (for a paper trail) but out

of your promise you've chose not to. I do not understand the secrecy. If

this is fact- than there should be no problem to submit the name.

It is not my position to dispute the hearsay that you have reported to the

list. I am a firm believer that every parent must make informed choices for

their child.

Robin

[ ] Re: FGF - Dr. Aguilar

> Well, first of all I'm NOT selling anything, I wish I had something to

sell,

> since my husband is out of work and autism is very costly. Maybe some of

you

> would like to help me pay my bills since we are getting shutoff notices

right

> and left.

>

> No, my only reason for posting what I did is to tell people to thoroughly

> check out treatments before rushing out to get the latest treatment. I

would

> feel extremely bad knowing what I know if I didn't say something and

> something happened to a child because this treatment is being promoted on

> this list. (It's not fun being attacked for telling the truth of what you

> know, but that seems to be a favorite on this list if someone questions

> something or asks for further evidence, or even gives references showing

> something different.)

>

> Encephalitis is a brain INFECTION or the inflammation of the brain from an

> infection. Now, I do think some of our kids may have a mild encephalitis,

> from things like HHV6 ( Binstock's research), but the encephalitis I

> was told about was full blown encephalitis- raging infection and

neurological

> deterioration. Not easily mistaken for autism or the other way around.

>

> What most of our kids display is an encephalopathy- abnormal brain

function

> due to degeneration or inflammation of unknown cause. (A mild chronic

> encephalitis could therefor be the cause of the encephalopathy, but again,

> that is not the kind of encephalitis I was told about.)

>

> I agree many of our doctors in the US don't know much about autism, or

about

> treatments, but jumping on the bandwagon of a treatment in Mexico (one of

the

> least monitored western counties for medical care) doesn't seem like the

way

> to go either. (Boy could I give my own horror stories about doctors I've

seen

> with .)

>

> I'm sorry I stepped on a few toes here and that I am in waiting mode

trying

> to get something I can post for a few select ones on this list to believe

me.

> However, I will not defy trust, or tell lies. I've always only told the

truth

> about what I know, what I learn and read about and what helps my child.

Since

> is now 17, I guess I'm not as desperate as I used to be. I've seen

> treatments come and go, some found to help, some to not do much at all,

and

> some to help a few in one grouping or another, and some to be downright

> dangerous.

>

> Again, my purpose in posting this is to encourage people to THINK before

they

> take their child somewhere for treatment that is possibly very risky.

>

> Ruth, 's

mom

>

> (It doesn't appear that anyone else cares to find out the truth on this

> except me. I suggested checking with your own pediatric neurologists, as I

> was told this had been discussed at neurology conventions, but so far the

> only things I've seen posted was one person said her doctor didn't know

about

> it- maybe he wasn't at one of the conferences. And someone else was going

to

> get Dr. Aguilar's rebuttal. So I guess I'm the only one trying to find out

> more. I've sent several e-mails to various pediatric neurology groups

listed

> by multiple search engines.)

>

>