Why I MUST do MORE than just fish oils LONG read to the end

[Guest guest]

I had oringally been refered to this group because I was told there

were some really awesome moms on this list and that this group had

ideas about more than just therapy interventions. (which are important

and I would never discount therapy) I read the paragraph on the home

page of this group that says....

" The Foundation is committed to assisting with the development of new

therapeutic approaches, preventions and cures to neurologically-based

speech disorders. We bring together parents and medical, research, and

educational professionals. Please join us and help to give our

children a smile and a voice. "

, to me, you don't seem committed to this statement. Actually, you

look like your are NOT " committed to assisting with the development of

NEW approaches, PREVETIONS AND CURES..... " (caps added by me) You are

stuck on the fish oils and therapy and in a bully-like approach you

are discouraging what may truly be a cure for our children. Saying

that things like Diet and NACD the more " expensive and complex and

unproven strategies. " At one time, people were using Fish oils

before they were " proven " effective and believe me I am not against

using these. (sorry about the bully-like approach statement..but this

is what I feel like when I read your comments.)

Fundamentally NACD has been around for years and is proven effective.

It is NOT expensive and the fundamentals can be learned through

books and implemented at home.

As a parent, I am using the fish oils and E, but our diet has been the

fundamental PROVEN effective treatment. In ten months my children have

gone from year old speech to now peer level 4 year old receptive,

expressive, language. Articulation is now great. The oral motor issues

have improved dramatically. My once drooling boys, that could not blow

out there birthday candles last year are now SPEAKING, BLOWING, and

KISSING. Yes I had to put them on just fruits, vegetables, and meat,

but IT WORKED!!!! It was working DRAMATICALLY long before fish oils

entered the scene..Although, again these have been helpful for ONE of

my twins..the other still cannot tolerate them and he has made the

most improvement!

Our parent group also has seen DRAMATIC improvements with DIET

intervention alone.

Our DAN! appointment on Friday was very informative! (We have two

DANS! and they are both MD's with children.)

The inforamation he gave me has been repeated by our GI and a celluar

research specialist and our main DAN! MD.

He was telling that children with apraxia most often have a parent

with celiacs disease. Sometimes the parent does not even know it. I

found this interesting because I had asthma growing up and an

intolerance to gluten, and dairy. My mom had me on a diet free from

gluten and dairy and when I was on this diet, I did not need the

medication for my asthma. When I went to University, I started eating

wheat and dairy, my asthma got worse but I controlled it with the

Asthma meds.

Well to make a long story short, even though my asthma was controlled

with the meds, my gut suffered and I developed GERDS and severe

stomach problems. I have since gone back to NOT eating wheat and dairy

foods, mostly just whole foods (fresh fruit, vegs and meat) He said

this was a good idea because if I continued with my old diet, I could

have been at high risk for developing stomach cancer.

He said that even though my kids do well now, I should stick to our

whole foods diet with no wheat, gluten, or dairy. He said that the

problem with kids doing well on fish oils is that it masks the real

digestive problems. It takes care of things neurologically, and some

digestive issues but the digestive problems even though perhaps not

evident, will put them at high risk for stomach cancers and other

cancers and MUST NOT BE IGNORED!

He was very emphatic about this.

Diet is the most important intervention. Fish oils, and other omega

oils to repair the damage but diet must be in place eventually. He

says anyone who disagrees with this is not interested in truly healing

the child. The oils and therapies may give the child back their

speech, much like the asthma meds controlled my asthma, but the real

problem is still there and will get bigger if not addressed!

This really confirmed to me that what I was doing was right for my

kids. DIET first. My motherly instinct told me that the cod liver oil

was not enough and for one of my twins, it was causing problems. Sure

it may bring out speech but it isn't healing was is truly damaged or

is it is just taking care of the symptoms.

He told me that studies at Sick Kids Hospital in Toronto are underway

and there have been others done that show what the long term affects

of ignoring gut issues, the root of most neurological problems, will

result in cancer.

I told him my kids came back with a negative celiac panel and he

explained that most of the kids do but the reality is the test is not

accurate for our kids. Once again he said (confirming what our GI

said) taking out the foods and watching for many months is the only

way to tell if they are offending. He recommends starting with only a

few fruits, vegetables and ground meats.

Our DAN! MD will not take on a patient if the parent is not interested

in doing a diet intervention which is the fundamental of healing the

body. Anyone who wants to take short cuts to take care of the obvious

symptoms like just adding the fish oils or a supplement or two etc is

not someone he would spend the time with. He explained, that the child

may progress neurologically with the oils but he is NOT COMPLETELY

HEALED. He said I would be fooling myself if I accepted by child as

healed if I only did this intervention although he does add fish oils,

vitamin E, K2 and a few others once a good diet has been established.

In the long term, my child will suffer if I don't address other issues.

Now I don't worship any one person or any one idea. I only go by what

I feel is right for my child and this man to ME is right on it. I

would discourage following the advice of anyone who is only focused on

one intervention that does not include a diet foundation. Or anyone

that comes accross as having the ONLY answer to our children apraxia

or other neurological or developmental disorder.

I have spoke with many other mothers on this list through private

emails and we have just wanted to voluntarily " walk the plank " on this

board. It would be easier than fighting with the captain. However we

all agree that this captain needs to accept the " new therapeutic

approaches, preventions and cures to neurologically-based speech

disorders " ....

We also agree that we are MORE concerned with helping other children.

This is ULTIMATLY why we are here. It is our ONLY motive. New

moms...listen to your own intincts....if it is telling you that the

therapy your child is getting is enough, then so be it, if it is

telling you that therapy and fish oils or whatever supplements your

child needs is enough, then so be it, if it is telling you, your child

needs diet changes, fish oils, old and new therapies, then so be it,

but NEVER NEVER NEVER on this journey let anyone, no matter who they

are tell you that their way FIRST is the best way and with a closed

mind tell you other ways are unproven and expensive....there is only

ONE way for your child and the only way to find that out is to

research on your own, talk to many parents, listen, and try only what

YOU feel is RIGHT for your own child's healing whether it is MORE or

LESS than what someone else did for their child: be that someone, a

parent, a patient, a doctor, a hospital, an institute, a foundation,

hundreds or thousands of other parents..it doesn't matter how big they

are...YOU take all the inforamation you have researched, learned,

questioned and decide with your dearest motherly or fatherly instinct,

what is right for your UNIQUE child. And may all the healing come to

you and your family.

If you would like to know, for information purposes,what we have done

so far, I would be happy to share with you our success story.

All the best