Nordic Naturals use - Omega 3-6-9 vs ProEFA and dosage at beginning (long intro)

[Guest guest]

My son is 25.5 months old and about 30 lbs. He doesn't have an

official diagnosis of apraxia, but dysarthria (SLP said it is too

soon to tell if apraxia or not). He also has quite a few sensory

integration issues and hypotonia. The hypotonia affects both gross

and fine motor skills. He started walking at 21.5 months and now

toddles pretty quickly but some days does run into a lot of things

and is more off balance. He wears a soft compression suit/orthotic

called theratogs that has worked wonders with his hypotonia and SI (

is compression suit held together by velcro and then various

strapping is used to help him have proper posture and use proper

muscles (like soft hand of PT guiding him when they aren't there to

help) and also shoe inserts called polliwogs from Cascade dafco (has

toe cups to help with sensory integration so knows where body is

at). He is still only eating #2 baby food all the time and many

times #3 baby food. He also will eat crackers that aren't too hard

and toast. I have to feed him baby food, but he will pick up

crackers and toast. He drinks from straw (can drink from glass but

straw lid gives more independence). He at one time said mama (clear

back at 4 mos - didn't know what was saying but said phrase in

babbling, then later at 1 yr said dada, that is no longer the case.

His receptive language is excellent and actually floors the SLP (I am

an engineer by training, although I stay home and am disabled, I tend

to not use simple sentences all the time, but he understands and does

what I ask, when he's not being a two year old). He can do a few

sign language signs, but again he will use for a few days and then

not use them unless you really work hard to get him to. Mostly he

just grunts and cries to communicate and lately is finally pulling us

by the hand to area where he wants something and looks at it (still

won't point). He is quite intelligent and a good problem solver but

definite language and gross and fine motor skill delays. He was born

with Severe meconium aspiration that induced pneumonia and resulted

in him being on oxygen for 10 days in the NICU (they were amazed they

didn't have to ship him to a hospital with ventilator or heart/lung

machine. They also said we were fortunate I chose a natural birth

with self hypnosis as it was a calm gentle birth on baby and no meds

were involved to further suppress his respiratory system.

The doctors (neurologist and genetics/metabolism docs) are suspicious

of mitochondrial disorder, but he hasn't been sick a lot and one set

of blood tests gave indication might be and the other gave indication

of not being, so now am monitoring progress and see what happens for

next 6 months and may then do muscle biopsy (I have just found out I

have a chronic mycoplasma fermentan intracellular bacterial infection

which can lead to mitochondrial problems. I am currently diagnosed

with severe fibromyalgia with symptoms of severe pain, cognitive

problems (memory, foggy thinking, loss of words to say, etc), and

extreme fatigue (was all this way before pregnany and got better

during when was off all meds and for awhile after pregnancy while

brest fed. Eventually pain/fatigue got so bad i had to return to

meds (I also had a recurrent 5 x clostridium difficile infection that

only finally cleared up when I used a suppleental bacteria that binds

the toxins of the c diff and isn't susceptible to antibiotic they use

on c diff so can colonize colon with good stuff while c diff (and

other good bacteria) are killed.

Now finally for my question. I talked with Nordic Naturals and they

said ProEFA and Omega 3-6-9 Complete is same exact thing (formulas

for contents are same). I can't get the pro efa locally and so I got

the omega 3-6-9 JR chewable gel caps. I squirted one into my sons

organic yogurt today and then about an hour later he just kept

burping a lot and seemed as if he had tummy ache. Is this too much

to start him on at this age/size? Also if I see improvement or hope,

I plan on ordering PRO EFA liquid or Omega 3-6-9 liquid (seems to be

cheaper for same makeup). He has had loose stool lately so I will

have to see if it makes worse.

Is this the right dosage that most peope start off with? Nordic

Naturals talked about half a dose for kids under 3 (which would be

one of the jr pills vs. 2). Then what am I likely to see happen (I

have read some archives and not clear on things) and what should I

look for in potential problems and is there anything to do if he gets

diarrhea like someone else said their child was getting (some other

supplement that is " clogging " .

We recently started seeing Debra Beckman in Orlando FL, but she is

over an hour away so she is kind of doing her protocol of oral motor

with him and then lets me video tape to I an show to his SLPs here in

town provided by early steps (EIP program) and they can use it and

make comments/recommendations to her. She gives us exercises to

strengthen and stretch his lips (when we first went about 2 months

ago she said he was using his mouth at less than 30% efficiency).

Last session she did what I call a food " dance " with . He

wanted nothing to do with the raw slice of apple she had but she had

him touch it then he would cry and protest so she would let go back

to his favorite activity playing with ball toy. Once he calmed town

she woud have him touch again and he would again get upset. She did

this until he didn't get upset (about 6 times), then same sequence

with smelling, then with kissing or at least touching to lips. Then

she got a 1/2 inch piece and wrapped up in organza fabric and but at

back of mouth opening onto molars in area where we have used P

gripper to bite on for strengthening exercises and he chewed on it

until it was like applesauce with no protests. Then she took a slice

of apple and put back there and he chewed on a few times and got some

in mouth. Some he spit out and some he went ahead and chewed. I was

quite excited to see him actually eat something besides baby food,

pizza crust, crackers or toast. Anyway for my first post this is

probably way too long but I wanted to give a background and then let

anyone comment on EFA supplementation and anyother things they might

have to offer.

My husband is very supportive, but he is working and also going to

school for executive MBA (work asked himm to do and is prepaying).

We agreed to this 1 month before we found out was

developmentally delayed and 2 months before 2 hurricanes hit our

house in 2004 and water damaged 2 rooms and roof and pool room,

fence, etc. We have roof done but not much else, really hard to get

done, and especially since Katrina last year. Workers are hard to

come by. Anyway I am telling this as he comes home and I literally

hand off to him so I can rest up for next day since I am

disabled all this therapy for him and my doctor appts is hard to keep

up. So he hasn't had a lot of time to learn about except what I tell

him and when he is able to go to some of therapy or watch video. I

am asking as I am looking for conferences that make financial sense

to attend or video learning (that is good in presentation) to help

both of us as I read but don't retain a lot or mix it up and Ken is

unable to devote much time to that and he just doens't have any more

energy to give. I am looking for this for speech delays, sensory

integration programs and alternatives (we use wilbarger brush 3-5

times per day and joint compression - hard to do with theratogs

covering a lot of his body more often as he still doensn't really

like putting it on). We also do OT type swinging on swing we bought

for home with platform, soft taco fabric sling and a " sky " chair net

and fabric swing, ad then the playground. We also do other things

for input to help calm him.

Any of your suggestions would be greatly appreiated and thanks for

taking time to read such a long post from a newbee. I just am really

excited after buying the book the late talker and the idea the EFAs

coud help my son. I am also taking adult Omega 369 in case it can

help with my cognitive problems.

Sandy

[Guest guest]

Hi Sandy -

You wrote:

I squirted one into my sons

organic yogurt today and then about an hour later he just kept

burping a lot and seemed as if he had tummy ache. Is this too much

to start him on at this age/size?

There may be some difference of opinion but we found that the fish oil

supplements do cause Josh to have some burping and, when I take them, they

aggravate my acid reflux. However, the doc said it's not hurting Josh when

compared to how much it's helping him. Sometimes I have my doubts about that

but he's been on them now for about 3 1/2 years and he appears to be fine

gastro-wise - still burps some but now it seems to depend on what I give him

with the fish oil. I stopped using the yogurt with the fish oil and have been

putting it in applesauce for a very long time - seems to be less burping that

way. BTW, your son sounds exactly like Josh when he was younger - he said mama

and dada, had some other consonant sounds at 16 months, had a febrile seizure

(from a fever associated with an ear infection) and then lost his speech. At 4,

he had only ba as the syllable he could say. I started him on the fish oil on

July 27 of that year - by August 27 he was saying words. He's 7 1/2

now (almost 8) and I can't shut him up! It's great! If you want, you can

contact me off line if you want to talk more.

Sherry