Re: Vitamin E - lack of pain sensation

[Guest guest]

1) The OT should be guiding you. I would do it in a little

while...not right now. Maybe 2 more weeks. His body needs settling

time. For the next 2-4 weeks I'd do the preview cd. He can listen to

that with or without headphones. Graduate him into headphones. I'd

fire any OT who told you to do more than 15 minutes per day, 2 weeks

per cd, 5 days on, 2 off. If Charlie craves more, as Mochael did, we

use regular classical music cd or the preview as " dessert " and he

listens to them on the off days.

I would also consider books on tape or cd without headphones in the

car.

This is where we are. I will do NACD but in a bit. My children have

been through a lot. No big changes until my daughter's D levels go up

and we can get out in the sun more and heal those livers.

Do not start it again until you know you can follow through or you

could hurt him per my OT.

Remember, you have no idea what these new things you are doing will

do. Ask what you will see...regression, sensory reorganization?

Obsessions? The last thing you want to do is use something like TLP

which is used in nondetoxing kids, at the wrong time and hurt him.

Best wishes always.

> > > > > >

> > > > > >

> > > http://health.

> > > <http://health.

> > <http://health.

> < /links>

> /group/ /links>

> > /group/ /links>

> > > /group/ /links

> > > > > > folder: Vitamin E

> > > > > >

> > > > > > Vitamin E could help with lack of pain sensation.

> > > has

> > > > > talked

> > > > > > about ph being able to feel pain after starting

Vitamin

> > > E.

> > > > >

> > > > > > Geng is another person that has mentioned it helping

> > Tanner.

> > > > > Please

> > > > > > take a look in the Vitamin E folder for information to

read

> > > > through.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > http://health.

> > >

> > <http://health.

> >

> <http://health.

>

< /message/7235

>

> /group/ /message/7235

> >

> > /group/ /message/7235

> > >

> > > /group/ /message/7235

> > > 6

> > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > difficulty, coordination problems, low tone, loss of

> > > reflexes,

> > > > loss

> > > > > > of pain sensation (high pain tolerance), poor

> > proprioception

> > > and

> > > > > > positional sense - ie poor concept of body's position in

> > > space -

> > > > so

> > > > > > walks into walls etc). It is not a coincidence.

> > > > > >

> > > > > > Hope this is helpful

> > > > > > Tina

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

You have mentioned the hands before. Are you tinking that is part of

the peripheral neuropathy, peekaboo high glucose thing?

> > > > > >

> > > > > >

> > > http://health.

> > >

< /links>

> > > /group/ /links

> > > > > > folder: Vitamin E

> > > > > >

> > > > > > Vitamin E could help with lack of pain sensation.

> > > has

> > > > > talked

> > > > > > about ph being able to feel pain after starting

> Vitamin

> > > E.

> > > > >

> > > > > > Geng is another person that has mentioned it helping

> Tanner.

> > > > > Please

> > > > > > take a look in the Vitamin E folder for information to

> read

> > > > through.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > http://health.

> > >

> >

>

< /message/7235

> > >

> > > /group/ /message/7235

> > > 6

> > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > difficulty, coordination problems, low tone, loss of

> > > reflexes,

> > > > loss

> > > > > > of pain sensation (high pain tolerance), poor

> proprioception

> > > and

> > > > > > positional sense - ie poor concept of body's position

in

> > > space -

> > > > so

> > > > > > walks into walls etc). It is not a coincidence.

> > > > > >

> > > > > > Hope this is helpful

> > > > > > Tina

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Sorry.... wrong word usage.

However, I do trust the anecdotal evidence of all these mothers and children.

They have yet to steer me 'completely' wrong and I believe that Mark can still

benefit from a lot of the biomedical intervention out there though he is older.

While we remediated a lot of stuff via therapy such as APD, gross motor delay,

speech, etc. I have vastly improved his consistently levels, his attention, his

energy, and his 'with-it-ness' via biomed. Though he is older, it is still

working.

So.... we will try the E and see if it can give him some gains..... any

gains.... in motor planning. I trust the experience of all the mothers and will

give it another shot since I didn't do it correctly the first time round.

Not too much left for Mark..... really our biggest major problem remaining lies

in the fine motor planning. Getting his hands working just a little better

would be fabulous. It is coming and he is vastly improved from where he was 2

years ago but it is so slow and such is a long process via therapy (seems much

longer and slower than speech).... the hands just don't work very well.

Cross your fingers!

Janice

PS. If this helps an older child, just think of how many kids it could work

for!

[sPAM]Re:[ ] Re: Vitamin E - lack of pain sensation

> > > > >

> > > > >

> > http://health.

> > < /links>

> > /group/ /links

> > > > > folder: Vitamin E

> > > > >

> > > > > Vitamin E could help with lack of pain sensation.

> > has

> > > > talked

> > > > > about ph being able to feel pain after starting

Vitamin

> > E.

> > > >

> > > > > Geng is another person that has mentioned it helping

Tanner.

> > > > Please

> > > > > take a look in the Vitamin E folder for information to

read

> > > through.

> > > > >

> > > > >

> > > >

> > >

> > http://health.

> >

>

< /message/7235

> >

> > /group/ /message/7235

> > 6

> > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > difficulty, coordination problems, low tone, loss of

> > reflexes,

> > > loss

> > > > > of pain sensation (high pain tolerance), poor

proprioception

> > and

> > > > > positional sense - ie poor concept of body's position in

> > space -

> > > so

> > > > > walks into walls etc). It is not a coincidence.

> > > > >

> > > > > Hope this is helpful

> > > > > Tina

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Janice,

I have been thinking of Mark a lot lately. Mostly because it it was not for

him and your path I may have thought my boy had just a small speech disorder

- latetalker stuff. Anyway, I want to share with you two suppliments that

have really helped Charlie. I know that you are loaded down with suppliments

and who wants to even learn about another some days.

Earlier we spoke about Quality of Supplients. I believe Xymogen makes some

quality stuff. Is Mark taking and IGG? If so, what is your experience?

Charlie is taking the Xymogen IgG 2000 DF. We have seen good stuff from him.

Less Sensory.

As for the Brain we function we saw our biggest leap with Xymogen's

Phosphaline it is a Polyenylphosphatidylcholine (PPC). " Studies show PPC

ingestion increases cholinelevels in the blood and brain and supports

acetylcholine sysnthesis for proper neuronal and cell function, healthy

cholesterol levels adn gastric mucosal protections. " This was a WOW factor

for us. Have you been working with this at all?

Colleen

Mother of Charlie 30 months

-

Re:[ ] Re: Vitamin E - lack of pain sensation

Sorry.... wrong word usage.

However, I do trust the anecdotal evidence of all these mothers and

children. They have yet to steer me 'completely' wrong and I believe that

Mark can still benefit from a lot of the biomedical intervention out there

though he is older.

While we remediated a lot of stuff via therapy such as APD, gross motor

delay, speech, etc. I have vastly improved his consistently levels, his

attention, his energy, and his 'with-it-ness' via biomed. Though he is

older, it is still working.

So.... we will try the E and see if it can give him some gains..... any

gains.... in motor planning. I trust the experience of all the mothers and

will give it another shot since I didn't do it correctly the first time

round.

Not too much left for Mark..... really our biggest major problem remaining

lies in the fine motor planning. Getting his hands working just a little

better would be fabulous. It is coming and he is vastly improved from where

he was 2 years ago but it is so slow and such is a long process via therapy

(seems much longer and slower than speech).... the hands just don't work

very well.

Cross your fingers!

Janice

PS. If this helps an older child, just think of how many kids it could work

for!

[sPAM]Re:[ ] Re: Vitamin E - lack of pain

sensation

> > > > >

> > > > >

> > http://health.

> > <http://health.

< /links>

/group/ /links>

> > /group/ /links

> > > > > folder: Vitamin E

> > > > >

> > > > > Vitamin E could help with lack of pain sensation.

> > has

> > > > talked

> > > > > about ph being able to feel pain after starting

Vitamin

> > E.

> > > >

> > > > > Geng is another person that has mentioned it helping

Tanner.

> > > > Please

> > > > > take a look in the Vitamin E folder for information to

read

> > > through.

> > > > >

> > > > >

> > > >

> > >

> > http://health.

> >

>

<http://health.

< /message/7235>

/group/ /message/7235

> >

> > /group/ /message/7235

> > 6

> > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > difficulty, coordination problems, low tone, loss of

> > reflexes,

> > > loss

> > > > > of pain sensation (high pain tolerance), poor

proprioception

> > and

> > > > > positional sense - ie poor concept of body's position in

> > space -

> > > so

> > > > > walks into walls etc). It is not a coincidence.

> > > > >

> > > > > Hope this is helpful

> > > > > Tina

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Thanks Janice. That is very helpful. I think I am going to start this in the

next 30 days. He loves the head phones from the OT. I am very anxious to get

this rolling.

[ ] Re: Vitamin E - lack of pain sensation

The Listening Program for sensory stuff has been a Godsend. We are

about to do disc 4. All I can say is I have been crying for three

days. I did not realize how close to spectrum's door we were and how

far away my boy had gotten had we not known enough to take action. It

haunts me.

> > > > >

> > > > >

> > http://health.

> > <http://health.

> <http://health.

<http://health.

< /links>

/group/ /links>

/group/ /links>

> /group/ /links>

> > /group/ /links

> > > > > folder: Vitamin E

> > > > >

> > > > > Vitamin E could help with lack of pain sensation.

> > has

> > > > talked

> > > > > about ph being able to feel pain after starting Vitamin

> > E.

> > > >

> > > > > Geng is another person that has mentioned it helping

> Tanner.

> > > > Please

> > > > > take a look in the Vitamin E folder for information to read

> > > through.

> > > > >

> > > > >

> > > >

> > >

> > http://health.

> >

> <http://health.

>

<http://health.

<http://health.

< /message/7235>

/group/ /message/7235>

/group/ /message/7235

>

> /group/ /message/7235

> >

> > /group/ /message/7235

> > 6

> > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > difficulty, coordination problems, low tone, loss of

> > reflexes,

> > > loss

> > > > > of pain sensation (high pain tolerance), poor

> proprioception

> > and

> > > > > positional sense - ie poor concept of body's position in

> > space -

> > > so

> > > > > walks into walls etc). It is not a coincidence.

> > > > >

> > > > > Hope this is helpful

> > > > > Tina

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Read up on vitamin K and ask the Dr. Too much vitamin K = leukemia.

You have boneformation issues and are chelating. Slow down!

> > > > > > >

> > > > > > >

> > > > http://health.

> > > > <http://health.

> > >

< /links>

> > > /group/ /links>

> > > > /group/ /links

> > > > > > > folder: Vitamin E

> > > > > > >

> > > > > > > Vitamin E could help with lack of pain sensation.

> > > > has

> > > > > > talked

> > > > > > > about ph being able to feel pain after starting

> Vitamin

> > > > E.

> > > > > >

> > > > > > > Geng is another person that has mentioned it helping

> > > Tanner.

> > > > > > Please

> > > > > > > take a look in the Vitamin E folder for information

to

> read

> > > > > through.

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > http://health.

> > > >

> > > <http://health.

> > >

> >

>

< /message/7235

> > >

> > > /group/ /message/7235

> > > >

> > > > /group/ /message/7235

> > > > 6

> > > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > > difficulty, coordination problems, low tone, loss of

> > > > reflexes,

> > > > > loss

> > > > > > > of pain sensation (high pain tolerance), poor

> > > proprioception

> > > > and

> > > > > > > positional sense - ie poor concept of body's position

in

> > > > space -

> > > > > so

> > > > > > > walks into walls etc). It is not a coincidence.

> > > > > > >

> > > > > > > Hope this is helpful

> > > > > > > Tina

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Janice,

I keep screaming Lenandjoe.com. Check them out! They will answer alot of

your questions. I knew I was on the right page when I listed to ,

talked with Dorfman and Lenandjoe.com ( Homeopathic MDs - huge

envrionmentalists) and they all told me just about the same thing.

Colleen

Re: [ ] Re: Vitamin E - lack of pain sensation

I recently started supplementing vitamin D in a heavy way, 3000 per day. It

has made a big different in energy levels beyond the Omega 6 and nuts. I

started doing this recently after we came back from Mexico and I could see

the decline in energy, attention and conversational prowess.

The D brought back all of the gains we had seen in Mexico. Don't know why

but I'm going to keep at it for a while. Mark also has ankles that pronate

inwards and I hope this will be helpful to his bones. This problem has been

brewing for a while but seems to be getting worse as he gets older (and

heavier).

Do you all ever take a supplement holliday where you go to maintenance

doses?

What does vitamin K do? I don't have a lot of information about that one and

I don't even recall seeing it in the vitamin shops.

Janice

[sPAM][ ] Re: Vitamin E - lack of pain sensation

> > > > > >

> > > > > >

> > > http://health.

> > > <http://health.

> > <http://health.

< /links>

/group/ /links>

> > /group/ /links>

> > > /group/ /links

> > > > > > folder: Vitamin E

> > > > > >

> > > > > > Vitamin E could help with lack of pain sensation.

> > > has

> > > > > talked

> > > > > > about ph being able to feel pain after starting

Vitamin

> > > E.

> > > > >

> > > > > > Geng is another person that has mentioned it helping

> > Tanner.

> > > > > Please

> > > > > > take a look in the Vitamin E folder for information to

read

> > > > through.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > http://health.

> > >

> > <http://health.

> >

>

<http://health.

< /message/7235>

/group/ /message/7235

> >

> > /group/ /message/7235

> > >

> > > /group/ /message/7235

> > > 6

> > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > difficulty, coordination problems, low tone, loss of

> > > reflexes,

> > > > loss

> > > > > > of pain sensation (high pain tolerance), poor

> > proprioception

> > > and

> > > > > > positional sense - ie poor concept of body's position in

> > > space -

> > > > so

> > > > > > walks into walls etc). It is not a coincidence.

> > > > > >

> > > > > > Hope this is helpful

> > > > > > Tina

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Reading this it makes me see it is all about rotation, of food,

therapy, etc.

> > > > > >

> > > > > >

> > > http://health.

> > > <http://health.

> > <http://health.

> < /links>

> /group/ /links>

> > /group/ /links>

> > > /group/ /links

> > > > > > folder: Vitamin E

> > > > > >

> > > > > > Vitamin E could help with lack of pain sensation.

> > > has

> > > > > talked

> > > > > > about ph being able to feel pain after starting

Vitamin

> > > E.

> > > > >

> > > > > > Geng is another person that has mentioned it helping

> > Tanner.

> > > > > Please

> > > > > > take a look in the Vitamin E folder for information to

read

> > > > through.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > http://health.

> > >

> > <http://health.

> >

> <http://health.

>

< /message/7235

>

> /group/ /message/7235

> >

> > /group/ /message/7235

> > >

> > > /group/ /message/7235

> > > 6

> > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > difficulty, coordination problems, low tone, loss of

> > > reflexes,

> > > > loss

> > > > > > of pain sensation (high pain tolerance), poor

> > proprioception

> > > and

> > > > > > positional sense - ie poor concept of body's position

in

> > > space -

> > > > so

> > > > > > walks into walls etc). It is not a coincidence.

> > > > > >

> > > > > > Hope this is helpful

> > > > > > Tina

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

I recently started supplementing vitamin D in a heavy way, 3000 per day. It has

made a big different in energy levels beyond the Omega 6 and nuts. I started

doing this recently after we came back from Mexico and I could see the decline

in energy, attention and conversational prowess.

The D brought back all of the gains we had seen in Mexico. Don't know why but

I'm going to keep at it for a while. Mark also has ankles that pronate inwards

and I hope this will be helpful to his bones. This problem has been brewing for

a while but seems to be getting worse as he gets older (and heavier).

Do you all ever take a supplement holliday where you go to maintenance doses?

What does vitamin K do? I don't have a lot of information about that one and I

don't even recall seeing it in the vitamin shops.

Janice

[sPAM][ ] Re: Vitamin E - lack of pain sensation

> > > > > >

> > > > > >

> > > http://health.

> > > <http://health.

> > < /links>

> > /group/ /links>

> > > /group/ /links

> > > > > > folder: Vitamin E

> > > > > >

> > > > > > Vitamin E could help with lack of pain sensation.

> > > has

> > > > > talked

> > > > > > about ph being able to feel pain after starting

Vitamin

> > > E.

> > > > >

> > > > > > Geng is another person that has mentioned it helping

> > Tanner.

> > > > > Please

> > > > > > take a look in the Vitamin E folder for information to

read

> > > > through.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > http://health.

> > >

> > <http://health.

> >

>

< /message/7235

> >

> > /group/ /message/7235

> > >

> > > /group/ /message/7235

> > > 6

> > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > difficulty, coordination problems, low tone, loss of

> > > reflexes,

> > > > loss

> > > > > > of pain sensation (high pain tolerance), poor

> > proprioception

> > > and

> > > > > > positional sense - ie poor concept of body's position in

> > > space -

> > > > so

> > > > > > walks into walls etc). It is not a coincidence.

> > > > > >

> > > > > > Hope this is helpful

> > > > > > Tina

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Colleen,

Love you darling.... love our Charlie and yes, start TLP if he tolerates it

okay. If he does not, then stop and wait until he is mature enough to handle

it. Auditory processing is important for our kids and TLP is light therapy but

effective at getting those ears to work and 'hear' all of the sounds within the

range.

You can do therapy along with chelation and dealing with the metals. Just do

therapy between rounds. If he won't tolerate the headphones, then use a regular

stereo for now. There is a way to use TLP on little ones without the use of the

headphones. I know this because they do it at NACD with some of the kids.

You're obviously not going to get Bone conduction, but you will begin to

stimulate the ear in a light way.... even doing just this. (Mark has really had

a nice surge ahead with his round 1 of DMSA).

The longer we wait to get our children hearing, the more developmental

milestones they miss! Don't miss those milestones.... give them your best darn

shot for once they are past (take it from me), they are past forever..... You

can go back with therapy but that is definately the 'long and hard' road.

Do multiple therapies if you can. If Charlie can handle it, then do it. If he

cannot handle it, then back off but keep 're-introducing'. Use this philosophy

with all of the different types of OT, PT and SLP that your pursue. On some

things you are going to have to wait for his maturity level to catch up to the

specific therapy but keep trying and being persistent.

Janice

---- Original Message -----

From: Colleen Somerville

Sent: Wednesday, January 16, 2008 9:56 AM

Subject: [sPAM]RE: [ ] Re: Vitamin E - lack of pain

sensation

Liz,

I need to get to the listening program. My OT gave me two discs and we did

it for one day. I am not one to start something and not complete it:

however, I have to get this metal thing under control and start a new

program and see results. Then move onto the Listening Program. Your

thoughts?

By the way, thought I would share some good news this week... Charlie scored

OFF the CHARTS in language and retention for his age! Now the dyspraxia

stuff and dropping consinents...etc.

Glad we went into over drive last August.

Colleen

Mother of Charlie 30 months.

[ ] Re: Vitamin E - lack of pain sensation

The Listening Program for sensory stuff has been a Godsend. We are

about to do disc 4. All I can say is I have been crying for three

days. I did not realize how close to spectrum's door we were and how

far away my boy had gotten had we not known enough to take action. It

haunts me.

> > > > >

> > > > >

> > http://health.

> > <http://health.

> <http://health.

< /links>

/group/ /links>

> /group/ /links>

> > /group/ /links

> > > > > folder: Vitamin E

> > > > >

> > > > > Vitamin E could help with lack of pain sensation.

> > has

> > > > talked

> > > > > about ph being able to feel pain after starting Vitamin

> > E.

> > > >

> > > > > Geng is another person that has mentioned it helping

> Tanner.

> > > > Please

> > > > > take a look in the Vitamin E folder for information to read

> > > through.

> > > > >

> > > > >

> > > >

> > >

> > http://health.

> >

> <http://health.

>

<http://health.

< /message/7235>

/group/ /message/7235

>

> /group/ /message/7235

> >

> > /group/ /message/7235

> > 6

> > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > difficulty, coordination problems, low tone, loss of

> > reflexes,

> > > loss

> > > > > of pain sensation (high pain tolerance), poor

> proprioception

> > and

> > > > > positional sense - ie poor concept of body's position in

> > space -

> > > so

> > > > > walks into walls etc). It is not a coincidence.

> > > > >

> > > > > Hope this is helpful

> > > > > Tina

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Vitamins A and D work together. Mark came out about a month ago

excreting lots of mercury. When that happens mercury strips the body

of A. Who knows if he was already low in D. You may be evening things

out. Has the Dr. done any vitamin intake labs.

Janice, make no mistake, your son is my son in a few years. I see

that now. The far end of dyspraxia just before the tip of autism. You

have to talk to the dr. He may need CLO and not the typical fish oils

used here. He may need E or not, or K but mess with that E/K ratio in

a kid chelating like this and you are fighting wwith bigger demons

than dyspraxia. Dyspraxia where you live is worse than what most

recognize as dyspraxia in the U.S. I see that reading the Dyspraxia

Families list. We in the U.S. noticed it later because it was

initially not as bad.

Hang tough, talk to your doc...a new habit you will develop as this

one is listening. You research through him. Ask him why to do this

and why not that. A new form of research is all. You will get your

boy back. Sit tight and don't rock the boat!

> > > > > > >

> > > > > > >

> > > > http://health.

> > > > <http://health.

> > >

< /links>

> > > /group/ /links>

> > > > /group/ /links

> > > > > > > folder: Vitamin E

> > > > > > >

> > > > > > > Vitamin E could help with lack of pain sensation.

> > > > has

> > > > > > talked

> > > > > > > about ph being able to feel pain after starting

> Vitamin

> > > > E.

> > > > > >

> > > > > > > Geng is another person that has mentioned it helping

> > > Tanner.

> > > > > > Please

> > > > > > > take a look in the Vitamin E folder for information

to

> read

> > > > > through.

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > http://health.

> > > >

> > > <http://health.

> > >

> >

>

< /message/7235

> > >

> > > /group/ /message/7235

> > > >

> > > > /group/ /message/7235

> > > > 6

> > > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > > difficulty, coordination problems, low tone, loss of

> > > > reflexes,

> > > > > loss

> > > > > > > of pain sensation (high pain tolerance), poor

> > > proprioception

> > > > and

> > > > > > > positional sense - ie poor concept of body's position

in

> > > > space -

> > > > > so

> > > > > > > walks into walls etc). It is not a coincidence.

> > > > > > >

> > > > > > > Hope this is helpful

> > > > > > > Tina

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

He loves the headphones now. You are changing vitamins and stuff

though so that might change. Go low on volume as well. Not trying to

be a killjoy. I hope TLP does for Charlie what we saw for .

Still, it detoxed and we got gains almost too fast. In a way

it frightens me. Just be sure with your other changes he can do it.

> > > > > >

> > > > > >

> > > http://health.

> > > <http://health.

> > <http://health.

> <http://health.

> < /links>

> /group/ /links>

> /group/ /links>

> > /group/ /links>

> > > /group/ /links

> > > > > > folder: Vitamin E

> > > > > >

> > > > > > Vitamin E could help with lack of pain sensation.

> > > has

> > > > > talked

> > > > > > about ph being able to feel pain after starting

Vitamin

> > > E.

> > > > >

> > > > > > Geng is another person that has mentioned it helping

> > Tanner.

> > > > > Please

> > > > > > take a look in the Vitamin E folder for information to

read

> > > > through.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > http://health.

> > >

> > <http://health.

> >

> <http://health.

> <http://health.

>

< /message/7235

>

> /group/ /message/7235>

> /group/ /message/7235

> >

> > /group/ /message/7235

> > >

> > > /group/ /message/7235

> > > 6

> > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > difficulty, coordination problems, low tone, loss of

> > > reflexes,

> > > > loss

> > > > > > of pain sensation (high pain tolerance), poor

> > proprioception

> > > and

> > > > > > positional sense - ie poor concept of body's position in

> > > space -

> > > > so

> > > > > > walks into walls etc). It is not a coincidence.

> > > > > >

> > > > > > Hope this is helpful

> > > > > > Tina

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

The hands are the worst part of dyspraxia.... worse than the speech issues. The

hands for many years may as well been little stumps on his arms, that is how

useless they were!

I cannot tell you the years of frustration, pain and agravation those hands have

caused my son. Funny thing is..... while we knew that his speech was an issue

at 2.5, Marks hands did not become an issue until the 2nd or 3rd grade. We

knew he had fine motor issues, yes we did and we did give him therapy. But he

was not noticeably behind. He could write, draw (not cut or paste) just like

the other kids. His grade one writing would be an example of average grade 1

writing! His grade 3 writing, however, would be an average of grade 1 writing,

same in grade 4, 5 and 6!

DISASTER! How can I spell the word NIGHTMARE!! It is a nightmare not being

able to write, open locks, open a jar, do up your shoes, button your pants, coat

etc. when you are a 10, 11 and 12 year old. This is a nightmare hell for these

kids who are just entering puberty but have the skills of a grade one or grade

two child. Think about the bullying, the loss of self-esteem. It is a painful

time.

I shudder to remember it. Thank God we found NACD and saved Mark from the

taunting and the torture of that life. Though he still has some periferal fine

motor issues left, dyspraxia does not run his life anymore and he has absolutely

turned a corner in the healing process. A big part of that healing process is

the keyboard and keyboarding skills. Please think about teaching your kids how

to keyboard. Your child may not have the fine motor issues but if they end up

with them, you can literally save their soul via the keyboard. In order for

this to work however, you child must know how to type. Mark types his way

through school extremely successfully as do most older dyspraxics. Too bad he

couldn't type in grade 3..... didn't know how..... didn't realize what a

long-term isssue this is for dyspraxics.

Remediate the hand-writing but in the meantime, use the keyboard at school and

save the child's sense of self.....

Good typing programs are:

Jumpstart Typing (for little ones)

SpongeBob Typing

We used Typing Instructor Deluxe.

Janice

Mother of Mark, 13

[sPAM]Re:[ ] Re: Vitamin E - lack of pain sensation

You have mentioned the hands before. Are you tinking that is part of

the peripheral neuropathy, peekaboo high glucose thing?

> > > > > >

> > > > > >

> > > http://health.

> > >

< /links>

> > > /group/ /links

> > > > > > folder: Vitamin E

> > > > > >

> > > > > > Vitamin E could help with lack of pain sensation.

> > > has

> > > > > talked

> > > > > > about ph being able to feel pain after starting

> Vitamin

> > > E.

> > > > >

> > > > > > Geng is another person that has mentioned it helping

> Tanner.

> > > > > Please

> > > > > > take a look in the Vitamin E folder for information to

> read

> > > > through.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > http://health.

> > >

> >

>

< /message/7235

> > >

> > > /group/ /message/7235

> > > 6

> > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > difficulty, coordination problems, low tone, loss of

> > > reflexes,

> > > > loss

> > > > > > of pain sensation (high pain tolerance), poor

> proprioception

> > > and

> > > > > > positional sense - ie poor concept of body's position

in

> > > space -

> > > > so

> > > > > > walks into walls etc). It is not a coincidence.

> > > > > >

> > > > > > Hope this is helpful

> > > > > > Tina

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

I am going to get beat up on this but here goes: I think that he grew

into a fluoride/aluminum thing that my guy got earlier and mostly in

the right hand...the very thing that got us services when they blew

off the speech. TLP in both my overfluoridated kids (daughter is on

the preview cd) sparks hand stuff. NT daughter draws very detailed

pictures when on it. Son's hands are literally jumpstarted. Less so

now as we move to the speech cds. Plus his hands are sort of leveling

out.

It may be a mercury thing for us. The winter he turned 1 for three

months he had red hands and eventually got a mystery rash requiring

steroids. No one had answers. Mercury can do that. Mo way I'll ever

know.

At this point he has spider veins in hands. He has had collected

blood in feet at times but circulation is improving.

> > > > > > >

> > > > > > >

> > > > http://health.

> > > >

> < /links>

> > > > /group/ /links

> > > > > > > folder: Vitamin E

> > > > > > >

> > > > > > > Vitamin E could help with lack of pain sensation.

>

> > > > has

> > > > > > talked

> > > > > > > about ph being able to feel pain after starting

> > Vitamin

> > > > E.

> > > > > >

> > > > > > > Geng is another person that has mentioned it helping

> > Tanner.

> > > > > > Please

> > > > > > > take a look in the Vitamin E folder for information

to

> > read

> > > > > through.

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > http://health.

> > > >

> > >

> >

>

< /message/7235

> > > >

> > > > /group/ /message/7235

> > > > 6

> > > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > > difficulty, coordination problems, low tone, loss of

> > > > reflexes,

> > > > > loss

> > > > > > > of pain sensation (high pain tolerance), poor

> > proprioception

> > > > and

> > > > > > > positional sense - ie poor concept of body's position

> in

> > > > space -

> > > > > so

> > > > > > > walks into walls etc). It is not a coincidence.

> > > > > > >

> > > > > > > Hope this is helpful

> > > > > > > Tina

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Yes.... we are using Xymogen products, great company!

We are chelating Mark with an Xymogen product called Chelex and we also use

their COQ10 which has a better absorbtion rate than many of the Q10 products out

there. I am supplementing with PC right now and every other possible oil under

the sun!

I really like Xymogen. I will ask my do about their version of PPC and see what

he thinks about it for Mark.

Janice

Mother of Mark, 13

[sPAM]Re:[ ] Re: Vitamin E - lack of pain

sensation

> > > > >

> > > > >

> > http://health.

> > <http://health.

< /links>

/group/ /links>

> > /group/ /links

> > > > > folder: Vitamin E

> > > > >

> > > > > Vitamin E could help with lack of pain sensation.

> > has

> > > > talked

> > > > > about ph being able to feel pain after starting

Vitamin

> > E.

> > > >

> > > > > Geng is another person that has mentioned it helping

Tanner.

> > > > Please

> > > > > take a look in the Vitamin E folder for information to

read

> > > through.

> > > > >

> > > > >

> > > >

> > >

> > http://health.

> >

>

<http://health.

< /message/7235>

/group/ /message/7235

> >

> > /group/ /message/7235

> > 6

> > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > difficulty, coordination problems, low tone, loss of

> > reflexes,

> > > loss

> > > > > of pain sensation (high pain tolerance), poor

proprioception

> > and

> > > > > positional sense - ie poor concept of body's position in

> > space -

> > > so

> > > > > walks into walls etc). It is not a coincidence.

> > > > >

> > > > > Hope this is helpful

> > > > > Tina

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Liz,

When you read the dyspraxia families list, you are reading about the older

children, often from the UK. The dyspraxia families list is an offshoot from

the UK dyspraxia adult list. On the adult list, the motto is.... " I " m dypraxic

and proud of it! Don't try to change me! " Unfortunately many on the adults

list are suffereing in the extreme and I get sad sometimes reading their posts.

The really cool people on the Families List who were really treating their kids,

like Kim with 4 cuties, don't write anymore and seem to have left the board.

I don't have a lot of patience for the philosophy that there is NO cure for

dyspraxia that the adults take. I actually offended some president of the US

Dypraxia site FRP (or something like that) to the extreme by suggesting that my

son's APD issues were resolved by TLP and Digit spans. This was in the first

week of joining that board and he actually got so upset that he removed himself

from the list and started his own group for people who accept the condition

only.... He got extremely upset, informed me that in no uncertain terms was

there a 'cure' for neurodevelopmental disorders and made a HUGE stink about it.

To be fair, he is trying to advocate for people with various NDD, from access to

University to various fundings. I was astonished to find that people do not

want to be rid of their condition. But I think this is the case after a certain

age and a certain period of time dealing with struggle and with people always

trying to 'change' you. Dyspraxia is not perceived as the actual illness that

it is.

So, I have to watch my words if I ever write to the adults list for they are

determined to be " Dyspraxic and Proud " OMG!!!

Thankfully, my son does not take that attitude. He is determined to fight his

dyspraxia with every ounce of his being. He knows that 'he' is not the

dyspraxia and that they are separate entities. He has read some of the adults

messages and does understand how and why they feel the way you do. In Mark's

words, you have to know what it is to get better before you can believe in

it.....

Those adults do not have the experience of getting better. Mark does.

Janice

Mother of Mark, 13

[sPAM][ ] Re: Vitamin E - lack of pain sensation

Vitamins A and D work together. Mark came out about a month ago

excreting lots of mercury. When that happens mercury strips the body

of A. Who knows if he was already low in D. You may be evening things

out. Has the Dr. done any vitamin intake labs.

Janice, make no mistake, your son is my son in a few years. I see

that now. The far end of dyspraxia just before the tip of autism. You

have to talk to the dr. He may need CLO and not the typical fish oils

used here. He may need E or not, or K but mess with that E/K ratio in

a kid chelating like this and you are fighting wwith bigger demons

than dyspraxia. Dyspraxia where you live is worse than what most

recognize as dyspraxia in the U.S. I see that reading the Dyspraxia

Families list. We in the U.S. noticed it later because it was

initially not as bad.

Hang tough, talk to your doc...a new habit you will develop as this

one is listening. You research through him. Ask him why to do this

and why not that. A new form of research is all. You will get your

boy back. Sit tight and don't rock the boat!

> > > > > > >

> > > > > > >

> > > > http://health.

> > > > <http://health.

> > >

< /links>

> > > /group/ /links>

> > > > /group/ /links

> > > > > > > folder: Vitamin E

> > > > > > >

> > > > > > > Vitamin E could help with lack of pain sensation.

> > > > has

> > > > > > talked

> > > > > > > about ph being able to feel pain after starting

> Vitamin

> > > > E.

> > > > > >

> > > > > > > Geng is another person that has mentioned it helping

> > > Tanner.

> > > > > > Please

> > > > > > > take a look in the Vitamin E folder for information

to

> read

> > > > > through.

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > http://health.

> > > >

> > > <http://health.

> > >

> >

>

< /message/7235

> > >

> > > /group/ /message/7235

> > > >

> > > > /group/ /message/7235

> > > > 6

> > > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > > difficulty, coordination problems, low tone, loss of

> > > > reflexes,

> > > > > loss

> > > > > > > of pain sensation (high pain tolerance), poor

> > > proprioception

> > > > and

> > > > > > > positional sense - ie poor concept of body's position

in

> > > > space -

> > > > > so

> > > > > > > walks into walls etc). It is not a coincidence.

> > > > > > >

> > > > > > > Hope this is helpful

> > > > > > > Tina

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Is that what it is. I could not figure out if the UK folks get hit

more environmentally or get no medical help.

> > > > > > > >

> > > > > > > >

> > > > > http://health.

> > > > > <http://health.

> > > >

> < /links>

> > > > /group/ /links>

> > > > > /group/ /links

> > > > > > > > folder: Vitamin E

> > > > > > > >

> > > > > > > > Vitamin E could help with lack of pain sensation.

>

> > > > > has

> > > > > > > talked

> > > > > > > > about ph being able to feel pain after starting

> > Vitamin

> > > > > E.

> > > > > > >

> > > > > > > > Geng is another person that has mentioned it

helping

> > > > Tanner.

> > > > > > > Please

> > > > > > > > take a look in the Vitamin E folder for information

> to

> > read

> > > > > > through.

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > http://health.

> > > > >

> > > > <http://health.

> > > >

> > >

> >

>

< /message/7235

> > > >

> > > > /group/ /message/7235

> > > > >

> > > > > /group/ /message/7235

> > > > > 6

> > > > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > > > difficulty, coordination problems, low tone, loss

of

> > > > > reflexes,

> > > > > > loss

> > > > > > > > of pain sensation (high pain tolerance), poor

> > > > proprioception

> > > > > and

> > > > > > > > positional sense - ie poor concept of body's

position

> in

> > > > > space -

> > > > > > so

> > > > > > > > walks into walls etc). It is not a coincidence.

> > > > > > > >

> > > > > > > > Hope this is helpful

> > > > > > > > Tina

> > > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

[Guest guest]

Colleen,

Already have..... placing my order ASAP. (I'm listening.)

Mark is beginning to get body hair, just an itty-bitty bit. Does puberty mean

that I run out of time?

That is what I'm scared of.

Janice

[sPAM][ ] Re: Vitamin E - lack of pain sensation

> > > > > >

> > > > > >

> > > http://health.

> > > <http://health.

> > <http://health.

< /links>

/group/ /links>

> > /group/ /links>

> > > /group/ /links

> > > > > > folder: Vitamin E

> > > > > >

> > > > > > Vitamin E could help with lack of pain sensation.

> > > has

> > > > > talked

> > > > > > about ph being able to feel pain after starting

Vitamin

> > > E.

> > > > >

> > > > > > Geng is another person that has mentioned it helping

> > Tanner.

> > > > > Please

> > > > > > take a look in the Vitamin E folder for information to

read

> > > > through.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > http://health.

> > >

> > <http://health.

> >

>

<http://health.

< /message/7235>

/group/ /message/7235

> >

> > /group/ /message/7235

> > >

> > > /group/ /message/7235

> > > 6

> > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > difficulty, coordination problems, low tone, loss of

> > > reflexes,

> > > > loss

> > > > > > of pain sensation (high pain tolerance), poor

> > proprioception

> > > and

> > > > > > positional sense - ie poor concept of body's position in

> > > space -

> > > > so

> > > > > > walks into walls etc). It is not a coincidence.

> > > > > >

> > > > > > Hope this is helpful

> > > > > > Tina

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

No, it does not. Talk to Vicky about all the recoveries from benign

to heavy interventions sshe has seen.

Also, his hormones may be regulating from detox.

> > > > > > >

> > > > > > >

> > > > http://health.

> > > > <http://health.

> > > <http://health.

> < /links>

> /group/ /links>

> > > /group/ /links>

> > > > /group/ /links

> > > > > > > folder: Vitamin E

> > > > > > >

> > > > > > > Vitamin E could help with lack of pain sensation.

> > > > has

> > > > > > talked

> > > > > > > about ph being able to feel pain after starting

> Vitamin

> > > > E.

> > > > > >

> > > > > > > Geng is another person that has mentioned it helping

> > > Tanner.

> > > > > > Please

> > > > > > > take a look in the Vitamin E folder for information

to

> read

> > > > > through.

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > http://health.

> > > >

> > > <http://health.

> > >

> >

> <http://health.

>

< /message/7235

>

> /group/ /message/7235

> > >

> > > /group/ /message/7235

> > > >

> > > > /group/ /message/7235

> > > > 6

> > > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > > difficulty, coordination problems, low tone, loss of

> > > > reflexes,

> > > > > loss

> > > > > > > of pain sensation (high pain tolerance), poor

> > > proprioception

> > > > and

> > > > > > > positional sense - ie poor concept of body's position

in

> > > > space -

> > > > > so

> > > > > > > walks into walls etc). It is not a coincidence.

> > > > > > >

> > > > > > > Hope this is helpful

> > > > > > > Tina

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

I have one of the rickets kids and she was seemingly NT!

> > > > > > >

> > > > > > >

> > > > http://health.

> > > > <http://health.

> > > < /links>

> > > /group/ /links>

> > > > /group/ /links

> > > > > > > folder: Vitamin E

> > > > > > >

> > > > > > > Vitamin E could help with lack of pain sensation.

> > > > has

> > > > > > talked

> > > > > > > about ph being able to feel pain after starting

> Vitamin

> > > > E.

> > > > > >

> > > > > > > Geng is another person that has mentioned it helping

> > > Tanner.

> > > > > > Please

> > > > > > > take a look in the Vitamin E folder for information to

> read

> > > > > through.

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > http://health.

> > > >

> > > <http://health.

> > >

> >

>

< /message/7235

> > >

> > > /group/ /message/7235

> > > >

> > > > /group/ /message/7235

> > > > 6

> > > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > > difficulty, coordination problems, low tone, loss of

> > > > reflexes,

> > > > > loss

> > > > > > > of pain sensation (high pain tolerance), poor

> > > proprioception

> > > > and

> > > > > > > positional sense - ie poor concept of body's position

in

> > > > space -

> > > > > so

> > > > > > > walks into walls etc). It is not a coincidence.

> > > > > > >

> > > > > > > Hope this is helpful

> > > > > > > Tina

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Type to Learn and Type to Learn Jr. are great programs as well.

--------- [sPAM]Re:[ ] Re: Vitamin E - lack of pain sensation

You have mentioned the hands before. Are you tinking that is part of

the peripheral neuropathy, peekaboo high glucose thing?

> > > > > >

> > > > > >

> > > http://health.

> > >

< /links>

> > > /group/ /links

> > > > > > folder: Vitamin E

> > > > > >

> > > > > > Vitamin E could help with lack of pain sensation.

> > > has

> > > > > talked

> > > > > > about ph being able to feel pain after starting

> Vitamin

> > > E.

> > > > >

> > > > > > Geng is another person that has mentioned it helping

> Tanner.

> > > > > Please

> > > > > > take a look in the Vitamin E folder for information to

> read

> > > > through.

> > > > > >

> > > > > >

> > > > >

> > > >

> > > http://health.

> > >

> >

>

< /message/7235

> > >

> > > /group/ /message/7235

> > > 6

> > > > > > (Neuro symptoms of vit E deficiency: Speech

> > > > > > difficulty, coordination problems, low tone, loss of

> > > reflexes,

> > > > loss

> > > > > > of pain sensation (high pain tolerance), poor

> proprioception

> > > and

> > > > > > positional sense - ie poor concept of body's position

in

> > > space -

> > > > so

> > > > > > walks into walls etc). It is not a coincidence.

> > > > > >

> > > > > > Hope this is helpful

> > > > > > Tina

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Does this have any relationship to RSD -- reflex sympathetic dystophy? I have

this condition and am curious if anyone else has encounter this.

Thanks,

Tonya

ilizzy03 <lizlaw@...> wrote:

Thankyou! Diet only moved us from high pain tolerance to normal but

light touch remained a problem until recently for . Recently

though we got a multi in it with 70 iu of the right E. That coupled

with E taken in the past may be enough but I think we'll be upping it

after coagulation labs. Just yesterday I mentioned to hubby that

is more cuddly and actually encourages us to touch him in the

face head and neck...light touch problem areas before. I believe this

will make Prompt Therapy, which we start in three short weeks,

easier. I will read the book. There are no words. You have helped me

and mine more than anyone. Thank you so very much! As an aside, I

took E first (I take everything I give my kids first) and continue

taking it as it has helped me. For my concussion yesterday I took

Omega 3 as my antiinflammatory. Husband, research scientist, insisted

on nuprin at bedtime though. I get it...finally. I get what these

things help. Sorry I took so long to come around. I am glad I did not

just jump in on E though as our need was dietary and not transport,

likely because we are not dealing with pure apraxia here. We do have

a celiac E responder for sure in my daughter.

> > > Kids with apraxia have no pain sensation.

> >

> > Ethan never completely lacked pain sensation. He used to cry and

> run to

> > my husband or I if he fell down hard enough. He also had lots of

> > teething pain. He did used to have a higher pain tolerance level

> > though. That too seems to have remained the same despite the

lower

> dose

> > of vitamin E we have been giving him lately. Maybe it was never

a

> > transport issue with him - just a low level? Could it possibly

be

> > related to different things in different kids even if they share

an

> > apraxia dx?

> >

> > Nadine

> >

>

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

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hey Liz,

I am just reading this email. You are welcome. I am glad to help. It is my

intention to continue to help you and let you know what we are seeing

Charlie to help . We are paying so much darn money, it seems a shame

not to share the info. I realize each child is different, and I am by no

means suggesting you do what we are doing; however, you may try it and it

may just work and save you a bit of money and time.

You too, have helped my Charlie boy and our family as well. Especially with

the diet, H2o and general observations and research as well.

So, lets just keep on truckin and hopefully we can continue to see the great

improvements we have been seeing!

Colleen

Re:[ ] Re: Vitamin E - lack of pain sensation

Thankyou! Diet only moved us from high pain tolerance to normal but

light touch remained a problem until recently for . Recently

though we got a multi in it with 70 iu of the right E. That coupled

with E taken in the past may be enough but I think we'll be upping it

after coagulation labs. Just yesterday I mentioned to hubby that

is more cuddly and actually encourages us to touch him in the

face head and neck...light touch problem areas before. I believe this

will make Prompt Therapy, which we start in three short weeks,

easier. I will read the book. There are no words. You have helped me

and mine more than anyone. Thank you so very much! As an aside, I

took E first (I take everything I give my kids first) and continue

taking it as it has helped me. For my concussion yesterday I took

Omega 3 as my antiinflammatory. Husband, research scientist, insisted

on nuprin at bedtime though. I get it...finally. I get what these

things help. Sorry I took so long to come around. I am glad I did not

just jump in on E though as our need was dietary and not transport,

likely because we are not dealing with pure apraxia here. We do have

a celiac E responder for sure in my daughter.

> > > Kids with apraxia have no pain sensation.

> >

> > Ethan never completely lacked pain sensation. He used to cry and

> run to

> > my husband or I if he fell down hard enough. He also had lots of

> > teething pain. He did used to have a higher pain tolerance level

> > though. That too seems to have remained the same despite the

lower

> dose

> > of vitamin E we have been giving him lately. Maybe it was never

a

> > transport issue with him - just a low level? Could it possibly

be

> > related to different things in different kids even if they share

an

> > apraxia dx?

> >

> > Nadine

> >

>

[Guest guest]

RE: However I suspect that if we didn't identify the milk and wheat

allergies as early as we did in my boys (within the first few months

for my oldest...and pretty much at birth when ph came along with

the same unconsolable screaming/vomiting/misery, and go gluten/dairy

free - I'm sure the neurological deterioration would have been far

worse.

This is the only thing that haunts me. My son screamed for 18 months

with the exception of 2 times, when we were off that water. He got

happier when he could finally walk but still suffered. I suspect a

genuine milk allergy and a fluoride/lead issue with a little bit of

mercury (vaccines but more pertinent were the mercury ridden ear

drops). He is getting better every day. I believe we saw a lot, even

yeast leave him with dietary change. Seeing what we are now I believe

yeast popping back up caused regression. There is still more though

hanging in the balance. I'll know soon enough. I just hope I did not

find the allergy component too late. He is talking but motor planning

for articulation remains. I have seen it leave though so there is

hope.

> >

> There are degrees of severity. Some kids have no pain sensation,

> while others just have a high pain tolerance, while very sensitive

to

> light touch and things that shouldn't hurt are processed as painful.

>

> The mechanism is not characterized. And nothing is black and white.

> There are ranges of symptoms in every condition. In the end...the

> neuro symptoms of any vit E deficiency are caused by a low vit E

> availablilty to the nervous system. There are many paths that lead

to

> it, and in the end, it doesn't matter which one - ultimately if

there

> is low vit E around (whether from low levels in the blood because

you

> have a genetic syndrome, or have celiac disease or cystic

> fibrosis...or pancreatic insufficiency where the proper enzymes are

> not made to absorb fat...or a cholesterol metabolism abnromality,

to

> increased consumption from inflammation...oxidative stress, some

> mitochondrial disorder....to transport protein issues, the ultimate

> result is neurological dysfunction...that sounds coincidently

similar

> to symptoms of global apraxia! It also sounds like the apraxic

child

> has several issues going on that could contribute to vit E

> deficiency, from the gut issues, fat malabsorption, to inflammation

> and oxidative stress. If any of these symptoms known to be caused

by

> vit E deficiency improvem with vit E supplement...hmmmm, sounds

like

> the reversal of symptoms from vit E deficiency. Now the reason

these

> kids have vit E issues is still completely unknown, but there is

> evidence for metabolic/fatty acid metabolism issues (with all the

> carnitine deficiency), allergy and inflammation, increased gut

> permeability and inflammation with several children having

documented

> fat malabsorption syndrome of " unknown etiology " , immune

> dysregulation (several zinc deficient apraxic kids, recurrent

> infections/ear infections at young age), way too many children with

> antigliadin antibodies...much higher than the general

> population...the list goes on. It sounds like celiac disease, and

> nearly everyone who has checked finds that their apraxic child

> carries a gluten-sensitivity or celiac HLA (gene). (Maybe this

makes

> them genetically susceptible?) Sounds like some atypical celiac

> disease, yet biopsies for celiac disease tend to be negative...so

> this is either atypical celiac, or a completely different

> gastrointestinal/neurological condition that is screaming for

further

> research. It is very complicated, and multiple mechanisms in the

> genetically susceptible child coming into play. This is not just

vit

> E or omega abnormality...although thank goodness these simple

> supplements are helping so many of our children.

>

> Would suggest anyone dealing with food allergies in their child

read

> the book " Feast without Yeast " ...written by Bruce Semon MD a

> physician and father of an autistic child. My personal experience

was

> very similar to many of their early experience with uncovering food

> allergies, although his child was far more severely affected - and

> the allergies identified at a much older age. However I suspect

that

> if we didn't identify the milk and wheat allergies as early as we

did

> in my boys (within the first few months for my oldest...and pretty

> much at birth when ph came along with the same unconsolable

> screaming/vomiting/misery, and go gluten/dairy free - I'm sure the

> neurological deterioration would have been far worse. Now with the

> recent documentation of a mold/fungus/yeast allergy in the boys -

we

> have identified the missing allergic ingredient that I had not yet

> been able to identify up until this time, but knew existed. Clearly

> ph's apraxic symptoms return when he gets exposed to mold-

> contaminated foods, in addition to behavioral changes, and if its

bad

> enough...the typical allergy response of hives and an asthma

attack.

> We get a glimpse of it with slip-ups and it is frightening to see

> what happens neurologically to both boys. It has taken me years to

> believe what I was seeing with my own eyes...was really happening.

> This allergy-triggered neurological phenomonon is not well

documented

> in the medical literature. But it is a real entity for many

> children. A restricted diet is a small sacrifice in exchange for a

> healthy child. ph is also now on nystatin. It has made a huge

> difference, taking him to the next level of apraxia recovery. I

> suspect it is decreasing global inflammation from yeast that would

> normally live in your gut (and not cause problems typically)...but

> triggers inflammation and havoc in the yeast allergic child. Yeast

> and mold is everywhere. There is no medical evidence to support

> this " nystatin benefit " - or any of our nutritional intervensions

at

> this time, but the anecdotal evidence is mounting. However - the

> changes brought on by elimination diet, nutritional supplements

> (mainly fish oil and vit E), asthma meds (anti-inflammatories), and

> now yeast elimination from the diet, and nystatin...are

unbelievable.

> This is a treatable syndrome. I have said that before. And I don't

> think our cocktail is yet perfected. Once we understand the true

> underlying mechanism...we will be able to target it more

efficiently.

> In the meantime...this cocktail has given us a very normal little

boy

> who blends in with others his age,although yes, his speech is more

> immature than it should be for a 4 year old, and his fine motor

> skills will likely give him very poor handwriting - but he climbs a

> playstructure like any other kid (remember he couldn't do stairs

last

> Aug 2007), has lots of friends...is pedaling a bike with training

> wheels like a speed demon, sings, dances, and is a non-stop

> chatterboy with complex conversation and intelligible 95% of the

time

> even to strangers. We will not send him to kindergarten next year

> (Sept birthday) to give him a chance to grow (still 5-10% despite

the

> appetite of 2 men), and improve fine motor skills. Really an

apraxia

> miracle. It needs to be shared. Again, I won't be responding to

> comments, since I am trying to get the grant ready for autism

> speaks. But I figured it was time for an update...since we

continue

> to unravel this puzzle, and it just gets more and more complicated.

> But I am more confident than ever, that apraxia is treatable with

> nutritional interventions in addition to the speech therapy and

> occupation therapy that remains essential to help them catch up to

> their peers. -