new to list/questions about supplements

[Guest guest]

Hi all, I am new to this list and would like to introduce myself. My

name is and I have an almost 3 year old son, and an

8 month old daughter, Ellie. is very bright and social, but

is severely appraxic. Compounding this, he also has apert syndrome,

which is essentially a bone disorder causing malformations in the

growth patterns of the bones in the head, face, hands and feet. He

was hospitalized for the first 3 months and had 3 surgeries in his

first 3 weeks of life. He has had a total of 10 surgeries to date.

Due to his craniofacial condition, he was unable to breathe through

his nose at birth and was consequently given a tracheostomy until he

was 22 mos. He also had feeding issues so was given a gtube and a

nissen fundo and was slowly weaned off the tube over the course of a

year or so. He is hypotonic and due to the trache and gtube received

very little oral stimulation as an infant. Other than a need for

oral input (food stuffing, etc) and a hair fetish, he shows no

sensory integration issues. Considering all that he has been

through, it is amazing that he is not globally dysfunctional. There

is no known correlation between apraxia and apert syndrome. (however,

articulation issues are a given). It is interesting to note that

has several brain abnormalities yet he shows no sign of

cognitive impairment other than expressive speech/verbal apraxia. He

has a slightly smaller cerebullum, a thin corpus collusum and septum

pellucidum and less white matter than most. When I read about the

EFAs and a genetic predisposition toward deficiency connection with

learning disorders recently, I begain using ProEFA with . We

saw immediate results in what seems to be refered to as a " surge. "

He went from having 23 word approximations (he has been in speech

therapy since he was 1 month and currently receives 5 days a week of

intense one on one. In november he had 10 word approximations and by

march was up to 23) to 42 in 1.5 weeks on supplement. The biggest

change I noted was that he was suddenly able to correctly imitate any

new word or sound combo upon request whereas before, it would take

numerous therapy sessions and hundreds of daily repetitions for a new

word to stick. He continues to try new words and readily uses his

vocabulary to communicate rather than relying on the gestures, signs

and pictures that he is accustom to using. Additionally, I have

noticed big gains in his dynamic balance skills (he now stands on 1

foot, descends stairs independently). He has now been supplemented

for a month.

has all the characteristic signs of fatty acid deficiency and

those of candida overgrowth (he has been on antibiotics - in addition

to steroids, fluoride supplements, robinol - upwards of 100 times and

he's not yet 3!). He avoids dairy products. I have scheduled an

appointment for him with a gastroenterologist in 2 weeks so I have

not wanted to introduce probiotics or enzymes so as not to mask these

symptoms. I would like to make sure that any and all tests that may

be appropriate get done so any input in this area would be

appreciated.

I know he hasn't been on EFAs very long, but I'm wondering how you

all decide when to add other things in. There seems to be alot of

alternatives - omega 3's like proefa, efalex, coromega, cod liver,

flax seed oil, etc. plus omega 6 evening primrose oil, then there's

B6, magnesium, enzymes, probiotics and DMG and/or TMG. Is there a

test to see which of these would be most beneficial or are we all

going by trial and error? I have searched the archives but I can't

find any formula for changing or adding supplements or any

correlation between what is working for you all and what is not? I

would like to be doing more for , but I am not sure what to

try next. Also, are the gains always in a surge/plataeu pattern? I

wish there was some way to create a list of all the possibilities and

the results people have had with specific doses and combinations.

Sorry, for such a long winded message! Thanks for the opportunity to

post.