Going outside the box with supplements

[Guest guest]

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?

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> 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.

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