Re: and Vitamin E

August 29, 2006

I have given this 6 weeks to insure all that we have been seeing is real. I

keep thinking I will wake up and realize I was just dreaming. Although

ph was an amazing responder to omega 3 supplements, experiencing even

greater surges on higher doses of fish oil supplements than previously used

by many in this group...what we have seen after starting Vitamin E

supplementation is just unbelievable. I preface this post with the fact

that

this is just one person's experience...and now that many of you know that I

am a pediatrician, I also want to emphasize that I am not " recommending "

anything here as a physician - since this is based on only a single

anecdotal observation. Until a good clinical trial is done on both omega 3

and vitamin E...there is still no good clinical data available for our

apraxic children to base recommendations. However if the answer for at

least

some children is as simple as a safe dietary supplement...that particular

child & their family doesn't have 5-10 years to wait for the study results

to try a benign intervention that could make all the difference.

Omega 3 supplements were an excellent treatment for ph's global apraxia

in addition to good ST and OT. But he

still had serious neurological issues, only milder than they had been prior

to supplements.Thrilled as I was to see his improvement on treatment (and

distressed to watch regression off supplements)...it bothered me that no

one

could tell me why fish oil was working for so many apraxic children. It

meant that apraxia - a severe neurological motor planning disorder of

" unknown etiology " was potentially a treatable and reversible process.

Vitamin E supplements may actually be getting to the root of the problem,

at

least in my globally apraxic/dyspraxic child with low truncal and upper

body

tone and sensory integration dysfunction - including poor/no response to

painful stimuli. I don't want to give anyone false hopes for their

children...but apraxia " cure " is now in my vocabulary after just coming to

grips over months with the fact that we had a special needs child that

would

likely require years of intervention. ph's tone and strength are better

and right sided weakness - gone. His coordination is unbelievable, and his

is speaking in 10-11 word sentences that are intelligible 80% of the time

to

me. He is jumping, running, and climbing...like a normal kid. The most

amazing recent change is that his is now starting to process painful

stimuli

(ie nail-biting now hurts...as do all the little bumps and toe stubs etc -

a

strange thing to think is wonderful...but pain is a very important

protective mechanism). ph is a normal boy...just in time for his 3rd

birthday sept 23. My " moderately cognitively delayed " child with a severe

expressive speech delay and mild motor delay - as I was told at his initial

EI evaluation at 17 months, who made very slow progress with ST prior to

fish oil - is a bright, wonderful, and normal little guy.

We saw incredible surges in speech and coordination after I switched from

fish oil liquid to capsules over July 4th weekend when we were vacationing

in Lake Tahoe (as the liquid doesn't

travel well), and then regression or loss of the great coordination about a

week after switching back to the liquid. The only difference was the

capsules have Vit E. So after a little more research into vit E deficiency

possibility and now supplementation - and ph began surging (like we

never dreamed possible) within 48 hours of an additional 400 IU of alpha-d

tocophorol (natural, not synthetic).

Turns out the symptoms of vitamin E deficiency overlap with global apraxia

AND sensory integration dysfunction. Poor motor coordination, dysarthria,

loss of positional sense (vestibular issues), lose of deep sensation and

pain sensation, as I went through the list of symptoms from the Merck

manual for vitamin E deficiency... it gave me chills. Never before did I

come across anything that linked all the neurological soft signs of our

apraxic kids to the coordination and speech issues that many of them share.

Unbelievable that this connection has not been made before.

So why would he have a vit E deficiency? It is actually VERY rare to have a

vit E deficiency in general, BUT in cases of malabsorption - so cystic

fibrosis, celiac, or other food allergies where the intestinal lining is

disrupted through inflammation - it is in fact not uncommon. There could

also be increased consumption of vitamin E due to underlying inflammation.

Regardless of the mechanism - this would contribute to a fatty acid

metabolism problem - as unsaturated fatty acids would be vulnerable to

destruction - impacting cell membrane structure and function. Although

treatable early on with vit E supplements, long term many neurological

symptoms of vitamin E deficiency can become irreversible. This is why it

becomes essential to identify these deficiencies early and when the child

is

young and most likely to respond to treatment.

There are case reports of kids with celiac disease still malabsorbing

fat-soluble vitamins despite a

gluten-free diet. I was just reading in a dyspraxia book that wheat and

milk

allergy is very common in dyspraxia. Why??? What is the link to allergy in

these kids? It seems from the CHERUB site that more than the expected

number

of kids with apraxia (and autism) for that matter have " gut issues " , leaky

bowel or food allergies, including celiac disease. Could a vitamin E

deficiency be contributing to some of the symptoms? This was my question

from the initial regression off EPA - a story I posted a while back,

because

it didn't quite make sense that we would see such a dramatic loss of

abilities given he was still receiving the same # of grams of omegas (just

a

lower ratio of EPA - but again the ratio may be very important). However

could the vit E also be very important? There are just too many

similarities with the neurological symptoms of vit E deficiency and apraxia

to not look into this further. Vitamin E also plays an important role in

protecting the fatty acids from oxidation/destruction within cell

membranes.

So with low Vit E...one would end up with a functional deficiency of fatty

acids that could be alleviated by fish oil supplements. And in

supplementing

with high doses of omega 3/6 without sufficient vitamin E, vitamin E

supplies may be consumed, contributing to effects of a deficiency. Now I

have a mechanism that ties it all together. So granted...this is just a

theory. But Vitamin E together with fish oil (and involvement in this site

-

which influenced me to start fish oil supplements in the first place) has

changed our life.

Interesting that vitamin E is a component of carnaware?? What is the

active

ingredient inducing benefits?

If all of this is true, it is possible my son is malabsorbing other

vitamins

too...and

possibly apraxia/dyspraxia/hypotonia and sensory issues may be

neurological sequellae of allergic bowel disease or atypical celiac

disease.

Approximately 60% of

autistic kids have food allergy and apraxia. All the symptoms of apraxia

can be found in vit E deficiency.

ph's head MRI was completely normal. This was great news. The metabolic

work-up at Stanford also revealed a severe carnitine deficiency. Again,

carnitine is essential for fatty acid transport/utilization in the

mitochondria. So another piece of the puzzle. A carnitine deficiency will

contribute to low tone and can have serious long-term bad effects on the

heart. We are also now supplementing with carnitine, and this has likely

helped with improved tone - but we were seeing amazing changes in my son's

body strength and habitus with just the vitamin E prior to carnitine. A

secondary carnitine deficiency is also not uncommon in malabsorption

syndromes like celiac disease. So really this is a mechanism that unifies

all the findings in my son...serious food allergy/asthma/gut issues, global

apraxia, hypotonia and SID. So simple.

Low carnitine levels are commonly reported in PDD and autism. Few people

supplement. Not sure why not - given the importance of carnitine in fatty

acid metabolism and little down-side to supplementation. No one has really

looked into carnitine levels in apraxia. Maybe it is time that a more

comprehensive metabolic work-up is done in our apraxic children. A

diagnosis

of " unknown etiology " only means we haven't figured it out yet. Adverse

health implications of an undiagnosed carninite deficiency can be severe.

Maybe evaluating for carnitine deficiency in apraxia is a good idea? Not

sure if this is just my kid, or this represents something more common to

apraxia. Its already been shown to occur in kids on the spectrum. This is

something any pediatrician can order - these are just blood tests.

Carnitine

deficiencies should DEFINITELY be evaluated for underlying cause, and

treated.

Celiac disease should be ruled out in apraxic/autistic kids. A

gluten/casein

free diet will benefit those with milk and wheat allergies.

Maybe baseline vitamin E levels should be checked in these kids to

determine

whether there is a true deficiency identifiable? We got levels in ph

after supplementation - and they were " normal " ...but should have been much

higher than normal given supplementation. I won't take him off supplements

to see what he is at baseline, now that I have my normal child. I never

want

to see him regress again. But if a serious deficiency is identified -

higher

vit E supplements would be recommended by your pediatrician and your child

monitored. Remember that all the kids on fish oil are already getting some

vit E supplementation - since there is 15 IU in every capsule. At our high

omega 3 supplement 3 times a day dosing - my son was already getting an

additional 135 IU plus 30 IU in his flinstone multivit - so 165 IU, which

is

is 500% of the RDA for vit E. Yet with even higher vitamin E doses -

neurological symptoms started to melted away within days. Simply amazing.

Overall, supplementation with (natural) Vitamin E is safe. (Many of the

synthetic vitamins have different biochemistry and actually are not so

safe.)

It is a fat-soluble vitamin, so toxicity " is " possible, but rare. According

to J. Stordy in her book " the LCP solution " ...doses up to 66 IU per pound

(or 3000 IU for a 3 typical 3 year old) - are safe...but I wouldn't suggest

anyone go that high without further research on safety. Biggest issue is

impact on Vitamin K and possible increased risk of bleeding...just like

omegas. Vit E is usually made from soy - so typical vit E supplements are

problematic for those who are soy allergic. There are soy-free brands

available. A very safe dose to start with is 400 IU capsule once a day.

There are more complete tocophorol preparations available - which are ideal

because they also provide gamma tocophorol...which can become deficient

with

alpha d-tocophorol supplements. We have just been supplementing with alpha

and gamma. Gamma comes typically in a 300 mg gel-cap. One alpha and one

gamma a day is a good start. We saw immediate OMG results within 48 hours.

The surge lasted about 3 weeks, then leveled off. I did go to a higher dose

after the 4th week...and we got another surge which has brought us to where

we are now...my OT told me today that if this continues...ph no longer

needs OT past his 3rd birthday. This after a conversation about " falling

through the cracks just 2 months ago - and the need for us to continue OT

and a plan to pay out-of-pocket to stay with our excellent OT now provided

through EI.

So this is our story. Prayers answered. I am sure there are others out

there

like my boy. A change in the direction of my cllinical research efforts is

inevitable. However at the moment, I am enjoying my son. -

August 29, 2006

Hi Caludia,

Your son sounds almost identical to mine. He too has low carnitine in his blood

and is on RX Carnitor. But I honestly think the oil has helped him more. He has

low muscle tone and loose joints. He has asthma and apraxia.He is allergic to

peanuts. Mayo thought he had a mitochondrail disorder, fatty acid disorder too.

But no real hard evidence. So he is not diagnosed. I am going to try the

gyconutrients real soon (when they get here Isaac had a lot of testing which

included a muscle biopsy and a skin biopsy, MRI, muscle & nerve test all normal.

It is so frusterating to have all this testing done and they cannot tell me why

he has these issues.

Angel

Re: [ ] and Vitamin E