Re: Going outside the box with supplements

[Guest guest]

Hi Penny,

Nope because I moved from Jersey in the NYC area where they now have awareness

about what apraxia is to Florida where most still don't. And my son was

diagnosed numerous times in Jersey and New York as apraxic. And yet I move to

Florida (one of the states where there is much misdiagnosis) and my son Tanner

sees one professional who happened to be someone that Dr. Renai Jonas works with

from time to time- and at this point he was in the room with her...and he

actually said to me (now this is from memory from 3 years ago so may not be

exact)

" I've never seen a child like this before in my life. He's very high

functioning no matter what he has but it's possibly aspergers "

I think it was either me or Dr. Jonas at the same time that said " no he does not

have aspergers, but knowing me I probably said it a bit more sarcastically "

I've also heard from Dr. Jonas in Florida and Dr. Agin in NYC that (one told me

30 and one told me 40% independently of each other) of the children they see

today diagnosed as autistic are not autistic and are apraxic. Dr. Agin is also

seeing an increase in duel diagnosis of autism and apraxia. However Dr. Jonas

is 100% against any form of ABA to address any of the motor planning

impairments...and I agree. So that's the problem with misdiagnosis.

And more multifacted? I highly doubt most of the children have much more going

on than Tanner. His list of diagnosis was severe profound verbal and oral

apraxia, dysarthria, hypotonia, motor planning impairments in his limbs, sensory

integration dysfunction (to the point the child broke his finger and knows he

hurt it but doesn't feel pain like others but a tap on the head or a tickle

would hurt him-or do I have stories about sensory)

Tanner as a child looked " out of it " Guess how many people wouldn't have

diagnosed him as autistic if he grew up in California for example. He was

completely nonverbal -started to withdraw when put in with groups of children,

no facial expression 90% of the day. You want to see a typical Tanner face from

back in the day? Go to this page http://www.cherab.org/news/indexnews.html and

go all the way to the bottom under the photo of Haley from the Talking page.

It's a photo of my family and my husband is holding Tanner. The only photos I

put up of Tanner were his good ones where we caught a smile -those moments were

rare.

And I completely understand why a parent would be desperate and willing to try

anything for their child...I also am on the other side now and know many other

that are as well. I can relate to the desperation and yet I can say " you know

what? For most of us it was just like this and we did XYZ and our child was

mainstreamed by kindergarten and we didn't need to do all the diets and

supplements " And what do I need to add to that today? Medications! I mean

doctors can't get monies for research so to me they are just taking it live. We

live in such a realty TV world and parents will just try anything. And when it

comes to the vitamin e the world still doesn't know the outcome of what happened

in this group. And we are still waiting to hear on Evoni.

Sadly again if a child had a true vitamin e deficiency -one would probably know

as there are signs (see below)

" Vitamin E deficiency has been observed in individuals with severe malnutrition,

genetic defects affecting the alpha-tocopherol transfer protein, and fat

malabsorption syndromes. For example, children with cystic fibrosis or

cholestatic liver disease, who have an impaired capacity to absorb dietary fat

and therefore fat-soluble vitamins, may develop symptomatic vitamin E

deficiency. Severe vitamin E deficiency results mainly in neurological symptoms,

including impaired balance and coordination (ataxia), injury to the sensory

nerves (peripheral neuropathy), muscle weakness (myopathy), and damage to the

retina of the eye (pigmented retinopathy). "

My advice was simple Penny and harmless. Get a second opinion from a neuroMD on

all she is doing with her child. (even if that dan happens to be a neuroMD)

Stop everything except the fish oils and see if the surges continue. This

parent is probably spending tons of money on some dan approach which may or may

not be needed, which may or may not be safe. And her child may or may not even

be 3 years old. I recall she had just started the fish oils a week? prior to

starting all the vitamin e. She could be spending that money on some super fun

things for her child- or other alternative therapies like hippotherapy, dolphin

therapy- I mean lots you can do with a couple of extra thousands of dollars. Or

how much is the dan now a days? Do they charge less today than years ago?

So am I aware that my opinion is against where all the money is today? Yes -but

my concern is for the children -and believe it or not for all of you. Yes I

know that there is the unlikely chance that there will be a child that needs

1000 IUs of vitamin e- and there will be an expert medical doctor in this area-

probably the child in the hospital to take care of that situation. For a normal

child who is the garden variety " late talker " today, it's all taking a chance

-and to me I'd run fast from any doctor (and you are right if they call

themselves a dan they could be a medical doctor like a podiatrist or a social

worker etc. we just don't know) that recommended it to my child...unless as

discussed my child had some horrible rare disorder and needed it.

So yes I've asked myself the question as to why so many children are diagnosed

autistic and the answer came back loud and clear to me...for the many that are

misdiagnosed....money.

=====

[Guest guest]

I completely agree with what you just said. I am also grateful for and

this group but everyday we are learning more and more. What worked 12 years ago

still works but so do new methods, therapies, supplements, ect. that can be

added and compliment the existing methods. We are all here to learn. Sharing

experiences is why I belong to this group. I consider myself to be very

aggressive when it comes to my daughters treatments. I do everything in

moderation and add only one thing at a time if possible so I know whats working

and whats not. There is not only one expert and one no all. Kaufman

herself explained that to me.Thanks for saying what so many other people feel.

I'm sure understands because she herself was a pioneer.She paved the way

for all of us.

Tara (MOTHER WARRIOR)

-------------- Original message from " pdearmin " <pdearmin@...>:

--------------

Hi -

I think it is great that Jill is seeing results, and you are right that it is

best to try things one at a time. This is not always possible. When you go to a

DAN Dr., they run so many tests and recommend so many supplements because our

children are showing their immune, metabolic, and gastrointestinal systems are

all out of whack. And sometimes you can't patch a hole in one end of the hose

and expect the water gushing out all the other holes will show a difference in

the water pressure coming out the other end. We don't know Jill's Dr, she might

be a pediatrician, as my DAN Dr. is, he might be a neurodevelopmental Dr., we

don't know. You still have every right to question this, and I know you are

truly trying to protect the kids.

I am so excited for Jill that she is seeing progress, as we all know how

glorious that feels! We should give her the benefit of the doubt that she has

weighed her options and followed medical advice.

There is something I have been wanting to say for a long time, and I really

don't want you to take this personally, because you have truly helped thousands

of children and we are all very grateful. But, you yourself have asked the

question as to why so many kids are being diagnosed with autism. Isn't there

even a slight chance that the fish oil dosage alone simply may not be enough for

the majority of kids today, that something has fundamentally changed since your

son was first diagnosed? I'm not going to open the can of worms and talk about

all the different things assautling our children today, not the least of which

is overdiagnosis. But, as parents we need to stand up and take blame for taking

our children to these Drs., so very few of whom will say your child has only

apraxia or only SPD. You are more likely than not going to walk out of there

with at least a diagnosis of PDD, or scarily full-blown autism as we did.

We followed the formula, we saw great results on the fish oil dosage. We even

tried SPEAK and saw great things, but made the personal decision to stop. We

implemented our own home therapy and our son made great gains. We pursued

diagnosis, and oh boy did we get one, although not of apraxia which my son so

clearly has. We ignored the " experts " who wanted our son in intensive behavioral

therapy, but there is always this nagging doubt that their belief in your

child's future will be his---that he will be wrecked for life if you don't do

everything they say, and none of those treatments have any hope of full

recovery. Fish oils were a miracle for our child. But, they weren't enough for

him, and I know they aren't enough for so many children.

All I'm saying is that yes, we should all tread lightly and be respectful and

supportive of what we personally decide to do for our children. Those same

neurodevelopmental Drs will tell you there are no studies about the efficacy of

fish oils, but you are right that they tell you they will do no harm.

I would hope this could be a place where we could come share our successes and

be supportive of one another, without questioning another's journey even if it

is different than ours, or we flat out think sounds crazy. I would have thought

I would never do the things I am doing with my son, and now a year later here I

am. As moms, we will climb to the end of the earth to find what works, and for

some of us what works is different than the mainstream.

I know that you will continue to work tirelessly for our children, and they are

lucky to have you on their side. Just know that those of us that are willing to

go " outside the box " in treating our kids may just have the pioneering spirit

that lead to the fish oil discovery. Not the Drs or therapists will find the

answer for our children, it is only the parents on the front lines who will

fight for our children's future.

Thanks for reading!

Penny

http://twoplusoneequalsfive.blogspot.com/

>

> Jill the good news is good to hear as always. But as I said in my last message

to you - again you only had your child on the fish oils alone for a week or so

prior to adding the extreme dosage of vitamin E. How do you know what's creating

the surges?

>

> I'm thrilled that your child has not experienced any side effects yet. Please

be aware for your precious child's sake that in the medical cases I posted for

you the last time the myopathy that develops from too much vitamin e happened in

months in adults- and increased death rate was from just 400 IUs in various

individuals in the meta analysis I posted. From what I posted from the experts

you are giving your child over 3 times upper tolerable level of vitamin e which

would only be appropriate if your child had some very rare severe metabolic

disorder or under the care of a medical specialist in this area.

>

>

> Why not make sure your child even needs all this vitamin e? Why not give it a

try with just the fish oils alone for...I don't know a month or two? Why not try

stopping the vitamin E and not the fish oils and let us know if you still see

the surges that (again) if you check the archives -even recent ones (today?) we

all see on the fish oils alone. You could have your child on the right formula

of fish oils and for example feeding him twinkies and seeing surges right now

-but of course you wouldn't credit the twinkie would you? To me what's really

sad is that I used that example as an extreme but a twinkie a day 'may' be

healthier than 1000 IUs of vitamin E a day for a child. I'd check with a

neurodevelopmental medical doctor with a background in pediatrics and get their

opinion. Why take any chance with your child?

>

> And again -my son Tanner regressed 2 times prior to being on speak on just

vitamin E alone when I raised the alpha over the gamma -it's all in the

archives. Also..I wouldn't be so quick to assume that all the severe side

effects reported in this group were from vitamin k. As Clint Eastwood so

famously says you feeling lucky? To me vitamin e in mega dosages is taking a

chance. Again why take any chance with your own precious child? Especially when

for most -for thousands -for over a decade now -the right formula of fish oils

alone work. And they worked for the person's child that even started this (IMO)

mess with vitamin e in our group -check the archives.

>

> =====

>