Re: completely non-verbal

[Guest guest]

Hi Lucy,

My son Isaac is 32 months old and is 30 lbs. He takes Levocarnitine (100MG/ML

S), 4ML twice a day. It was prescribed by his neurologist.

________________________________

From: SorinI <sorinely73@...>

Sent: Monday, September 28, 2009 11:38:55 AM

Subject: [ ] Re: completely non-verbal

Can you please tell me how much carnitine you are giving to your son and how old

he is (lb)?

Do you give Acetyl-L-Carnitine?

Thank you,

Lucy

>

> I believe creatine helps build muscles -

[Guest guest]

We give acetyl-l-carnitine (not l-carnitine) - it's more absorbable. We started

with l-canitine and got no results. My son tested low for this. Definitely

also helped with speech. We started out at about 400 mg per day. I had to open

up a capsule and dump in his apple sauce. He now gets 1600 mg a day.

> >

> > I believe creatine helps build muscles -

>

[Guest guest]

How old is your son? My son is 8 and 63lb.

Thanks,

Lucy

> > >

> > > I believe creatine helps build muscles -

> >

>

[Guest guest]

My son is 7 and weighs about 50 lbs. He has been on this dose for well over a

year.

I saw results pretty quickly - I believe within a couple of days. THe best

thing to do with any supplement is to see if you get results and then adjust.

I have been very lucky - if something helps my son, I usually can tell within a

couple of days.

CAthy

> > > >

> > > > I believe creatine helps build muscles -

> > >

> >

>

[Guest guest]

---

My dd is 2y, and we use Nirdic naturals Pro-efa we get the capsules and just

puncture them, they squeeze very easily, they have lemon flavor and she actually

likes them, we do the same with vit.E, just squeezed strait in her mouth. Hope

this help . Krys

>

>

>

>

>

> ________________________________

> From: Madeline Wolfe <Madeline_wolfe@...>

>

> Sent: Wednesday, September 23, 2009 10:37:45 AM

> Subject: Re: [ ] completely non-verbal

>

>

> , maybe this info is helpful for you --most people here using fish oils

do this:

>

> http://www.facebook.com/topic.php?uid=115029735601 & topic=7401

>

> Re: [childrensapraxiane t] completely non-verbal

>

> My son is 2.5 yrs old and I would like to try the fish oils, but what form do

you give a child that age...is there a liquid or pill or what? My husband and I

are willing to try anything at this point.

>

> ____________ _________ _________ __

>

>

[Guest guest]

Is Acetyl-L-Carnitine the same as Levocarnitin? My son takes Levocarnitin

prescribed by his neurologist and I was just wondering if there is a difference.

He is pretty much non-verbal at 7 years old and can only repeat certain sounds

and says a few words.

> > >

> > > I believe creatine helps build muscles -

> >

>

[Guest guest]

Thanks, we will have to give that a try. He loves lemons so that may be the

ticket!

________________________________

From: sloneczko2004 <bakster6@...>

Sent: Tuesday, September 29, 2009 11:38:23 PM

Subject: [ ] Re: completely non-verbal

---

My dd is 2y, and we use Nirdic naturals Pro-efa we get the capsules and just

puncture them, they squeeze very easily, they have lemon flavor and she actually

likes them, we do the same with vit.E, just squeezed strait in her mouth. Hope

this help . Krys

>

>

>

>

>

> ____________ _________ _________ __

> From: Madeline Wolfe <Madeline_wolfe@ ...>

> @groups. com

> Sent: Wednesday, September 23, 2009 10:37:45 AM

> Subject: Re: [childrensapraxiane t] completely non-verbal

>

>

> , maybe this info is helpful for you --most people here using fish oils

do this:

>

> http://www.facebook .com/topic. php?uid=11502973 5601 & topic= 7401

>

> Re: [childrensapraxiane t] completely non-verbal

>

> My son is 2.5 yrs old and I would like to try the fish oils, but what form do

you give a child that age...is there a liquid or pill or what? My husband and I

are willing to try anything at this point.

>

> ____________ _________ _________ __

>

>

[Guest guest]

Why do some use the pro efa and the pro epa together?

From: Madeline Wolfe <Madeline_wolfe@...>

Subject: Re: [ ] completely non-verbal

Date: Wednesday, September 23, 2009, 11:37 AM

 

, maybe this info is helpful for you --most people here using fish oils

do this:

http://www.facebook .com/topic. php?uid=11502973 5601 & topic= 7401

Re: [childrensapraxiane t] completely non-verbal

My son is 2.5 yrs old and I would like to try the fish oils, but what form do

you give a child that age...is there a liquid or pill or what? My husband and I

are willing to try anything at this point.

____________ _________ _________ __

[Guest guest]

Hi Kimmy,

It seems to be the " magic " mixture that works for most.  It is the ratio of 2

caps EFA and 1 cap EPA

that seems to do the trick.  I know it works really well for my son.  I have

been told by other health

food stores that they have " the same thing " but in another brand than nordic

naturals, but the ingredient

ratios aren't the same and we've never had success with anything other than the

2 to 1 nordic natural

mix.

hth

sandy

________________________________

From: Kimmy Heil <kimberly19ray@...>

Sent: Wednesday, September 30, 2009 1:15:08 PM

Subject: Re: [ ] completely non-verbal

 

Why do some use the pro efa and the pro epa together?

From: Madeline Wolfe <Madeline_wolfe. ar>

Subject: Re: [childrensapraxiane t] completely non-verbal

@groups. com

Date: Wednesday, September 23, 2009, 11:37 AM

 

, maybe this info is helpful for you --most people here using fish oils

do this:

http://www.facebook .com/topic. php?uid=11502973 5601 & topic= 7401

Re: [childrensapraxiane t] completely non-verbal

My son is 2.5 yrs old and I would like to try the fish oils, but what form do

you give a child that age...is there a liquid or pill or what? My husband and I

are willing to try anything at this point.

____________ _________ _________ __

[Guest guest]

-

What brand of acetyl-l-carnitine do you use? , my 2.5 yr old, was on

levocarnitine for a few months for hypotonia but we did not see any improvement

so we stopped it. I would be interested in trying the acetyl-l-carnitine.

Thanks.

> > > > >

> > > > > I believe creatine helps build muscles -

> > > >

> > >

> >

>

[Guest guest]

My understanding is(CHERAB org.recommends this protocol), that you should start

with 1 pro-efa and 1vit.E, than around 6monts, or when your kid's speech

plateaus than you add pro-epa, then after next plateau you add another pro-efa.

Every child is different of course, so you my have to find your own balance. We

actually had to increase vitE to 800IU.

Krys

>

>

> From: Madeline Wolfe <Madeline_wolfe@...>

> Subject: Re: [ ] completely non-verbal

>

> Date: Wednesday, September 23, 2009, 11:37 AM

>

>

>  

>

>

>

> , maybe this info is helpful for you --most people here using fish oils

do this:

>

> http://www.facebook .com/topic. php?uid=11502973 5601 & topic= 7401

>

> Re: [childrensapraxiane t] completely non-verbal

>

> My son is 2.5 yrs old and I would like to try the fish oils, but what form do

you give a child that age...is there a liquid or pill or what? My husband and I

are willing to try anything at this point.

>

> ____________ _________ _________ __

>

>

[Guest guest]

Thank you

From: sloneczko2004 <bakster6@...>

Subject: [ ] Re: completely non-verbal

Date: Thursday, October 1, 2009, 12:06 AM

My understanding is(CHERAB org.recommends this protocol), that you should start

with 1 pro-efa and 1vit.E, than around 6monts, or when your kid's speech

plateaus than you add pro-epa, then after next plateau you add another pro-efa.

Every child is different of course, so you my have to find your own balance. We

actually had to increase vitE to 800IU.

Krys

[Guest guest]

I googled this and looked briefly - it said that the levocrnitin is

" l-carnitine " which would indicate to me that is not the same....

> > > >

> > > > I believe creatine helps build muscles -

> > >

> >

>

[Guest guest]

Do you know how many mg of vitamin E should be given? My son is only 20 months

old. Right now I am giving him ProEFA (Nordic Naturals) Which brand of the

Vitamin E and ProEPA do you use, how much, and is it safe for children my sons

age? Do they make them for kids like the ProEFA (Omega 3, 6, 9 Junior - Nordic

Naturals?)

Thank you in advance for any help!

>

>

> From: sloneczko2004 <bakster6@...>

> Subject: [ ] Re: completely non-verbal

>

> Date: Thursday, October 1, 2009, 12:06 AM

>

>

> My understanding is(CHERAB org.recommends this protocol), that you should

start with 1 pro-efa and 1vit.E, than around 6monts, or when your kid's speech

plateaus than you add pro-epa, then after next plateau you add another pro-efa.

> Every child is different of course, so you my have to find your own balance.

We actually had to increase vitE to 800IU.

>

> Krys

>

[Guest guest]

Can I just say that i really think people need to be careful about vitamin E.??

I think it is a GREAT thing that some kids are being benefitted by using it, but

I just feel people should be careful about advising to take this without a dr.

or pediatrician being involved in the process.??? I mean, this can cause

SEIZURES if you give too much and the child doesn't need it.??? That is the

problem witht he SPEAK nutrients, great for some but problem causing for

others.???? Something like Fish Oil is harmless to the child if too much is

given.??? My pediatrician and several other doctors said as much.??? Sorry to

speak so strongly but this little guy is only 20 months old and I'd hate to see

something that harmed him happen.

Sue

[ ] Re: completely non-verbal

>

> Date: Thursday, October 1, 2009, 12:06 AM

>

>

> My understanding is(CHERAB org.recommends this protocol), that you should

start with 1 pro-efa and 1vit.E, than around 6monts, or when your kid's speech

plateaus than you add pro-epa, then after next plateau you add another pro-efa.

> Every child is different of course, so you my have to find your own balance.

We actually had to increase vitE to 800IU.

>

> Krys

>

[Guest guest]

I would never give my child anything without speaking with his pediatrician

first. I talked to him several times before starting the ProEFA. Thank you for

your concern.

Sincerely,

[Guest guest]

Hi ,�� Did anyone use mitocoktail for apraxia,specific creatine and d-

ribose�� �we have been using mitocell cap for a while and added vit E

�with no succes but his fine motor improved�� � could you recommend a

brand of creatine for a 9 yrs old�

[Guest guest]

My dd is 25m and 29lb. It still little scary for me to use those higher doses,

but after luck of help from our doc.(we live in Canada), so there are not many

option for us, and after reading Dr. study on apraxia,malabsorption and

allergies, I got more confident. Mikayla does fit the profile from the study

perfectly.We use the adult version of Pro-efa 1gelcap,and PerfectE by Vitabase

-2cap.She is responding well to the supp.,she speaks more willingly, lots of

labeling, but not much putting together yet.We had her speech Cherey today,and

therapist was impressed with her progress.It is little scary for me at times to

be giving her all those supp.,but I'm also scared to watch my child slip away if

I don't do any thing.

Krys

>

>

> Can I just say that i really think people need to be careful about vitamin

E.??

[Guest guest]

can you email me a copy of Dr. ' study?

________________________________

From: sloneczko2004 <bakster6@...>

Sent: Friday, October 2, 2009 1:13:59 AM

Subject: [ ] Re: completely non-verbal

 

My dd is 25m and 29lb. It still little scary for me to use those higher doses,

but after luck of help from our doc.(we live in Canada), so there are not many

option for us, and after reading Dr. study on apraxia,malabsorpti on and

allergies, I got more confident. Mikayla does fit the profile from the study

perfectly.We use the adult version of Pro-efa 1gelcap,and PerfectE by Vitabase

-2cap.She is responding well to the supp.,she speaks more willingly, lots of

labeling, but not much putting together yet.We had her speech Cherey today,and

therapist was impressed with her progress.It is little scary for me at times to

be giving her all those supp.,but I'm also scared to watch my child slip away if

I don't do any thing.

Krys

>

>

> Can I just say that i really think people need to be careful about vitamin

E..??

[Guest guest]

Didn't want to sound alarmist, I was just concerned about the Vitamin E.???? My

pediatrician wasn't for it although he supported the ProEFA.?? As a follow up my

neurologist is ordering a test that will see what the actual level of Vitamin E

is so we can determine whether we will supplement.?? Best of luck to you!

[ ] Re: completely non-verbal

I would never give my child anything without speaking with his pediatrician

first. I talked to him several times before starting the ProEFA. Thank you for

your concern.

Sincerely,

[Guest guest]

Thank you but can this work if your chid is nonverbal as well like help to get

some words out?

From: Madeline Wolfe <Madeline_wolfe. ar>

Subject: Re: [childrensapraxiane t] completely non-verbal

@groups. com

Date: Wednesday, September 23, 2009, 11:37 AM

 

, maybe this info is helpful for you --most people here using fish oils

do this:

http://www.facebook .com/topic. php?uid=11502973 5601 & topic= 7401

Re: [childrensapraxiane t] completely non-verbal

My son is 2.5 yrs old and I would like to try the fish oils, but what form do

you give a child that age...is there a liquid or pill or what? My husband and I

are willing to try anything at this point.

____________ _________ _________ __

[Guest guest]

No problem.  I understand your concern.  I have a science background and work

for a biotech company.  There are too many cases of uneducated

parents unknowingly causing harm to their children with supplements.  Some

people think that supplements can't hurt, but that is not always the case.  I am

vary thorough in researching these supplements and discussing them with

professionals before dispensing them to my children.  All parents should take

the same care.

Best Regards,

________________________________

From: " NotefrmSue@... " <NotefrmSue@...>

Sent: Fri, October 2, 2009 7:03:05 AM

Subject: Re: [ ] Re: completely non-verbal

 

Didn't want to sound alarmist, I was just concerned about the Vitamin E.???? My

pediatrician wasn't for it although he supported the ProEFA.?? As a follow up my

neurologist is ordering a test that will see what the actual level of Vitamin E

is so we can determine whether we will supplement.? ? Best of luck to you!

[childrensapraxiane t] Re: completely non-verbal

I would never give my child anything without speaking with his pediatrician

first. I talked to him several times before starting the ProEFA. Thank you for

your concern.

Sincerely,

[Guest guest]

My 20 month old son was not speaking any words.  He only made vowel sounds.  I

started the ProEFA (Omega 3, 6, 9 Junior) supplements 3 weeks ago and he now can

say about 6-10 words.  He doesn't use them frequently, but it was wonderful to

hear even one word!  You should consult with your pediatrician to get the right

dosage of any supplement for your child's age and weight.  Good Luck!

________________________________

From: Kimmy Heil <kimberly19ray@...>

Sent: Fri, October 2, 2009 7:50:59 AM

Subject: Re: [ ] completely non-verbal

 

Thank you but can this work if your chid is nonverbal as well like help to get

some words out?

From: Madeline Wolfe <Madeline_wolfe. ar>

Subject: Re: [childrensapraxiane t] completely non-verbal

@groups. com

Date: Wednesday, September 23, 2009, 11:37 AM

 

, maybe this info is helpful for you --most people here using fish oils

do this:

http://www.facebook .com/topic. php?uid=11502973 5601 & topic= 7401

Re: [childrensapraxiane t] completely non-verbal

My son is 2.5 yrs old and I would like to try the fish oils, but what form do

you give a child that age...is there a liquid or pill or what? My husband and I

are willing to try anything at this point.

____________ _________ _________ __

[Guest guest]

my son only said his first word (mama) at 4.5 years old.� we hadn't heard of

the oils back then, but i did start

him on them after i found out about them.� i noticed babbling right away and

that was huge for me! by grade

1 he had about 10 words.� When he was 7 i started the vitamin e and within

days he signed that he was cold.

he had never noticed being frost bitten or hot or pain before that.

He is 10 years old now, and has tons of words and can be a little chatterbox.

Remember, it's not always the words that you'll find with the omegas, increased

babbling is also an indication

that he is a responder.� Just beware though, the first couple of weeks when

you start are tough.� My sons

behaviour was off the charts but we rode it out and boy am I glad I did!!!!! I

almost gave up and shudder to

think where we might be today if i did give up.

One of our first slp's told me he would never talk. Not to be juvenile or

anything, but i almost want to go

back to her and show her how far he's come�

Never give up

sandy

[Guest guest]

Thanks Sue for the warning, My son bloodwork came back and all vitamin levels

were normal but I was going to do the Vitamin E because I was doing the NN 369.

My son is verbal but he talks real fast and sometime just understand the last

words. the communication back and forth is just not there. You saved me money

and possible other problems down the line. I will stick with fish oil only.

Tracey

________________________________

From: " NotefrmSue@... " <NotefrmSue@...>

Sent: Friday, October 2, 2009 7:03:05 AM

Subject: Re: [ ] Re: completely non-verbal

 

Didn't want to sound alarmist, I was just concerned about the Vitamin E.???? My

pediatrician wasn't for it although he supported the ProEFA.?? As a follow up my

neurologist is ordering a test that will see what the actual level of Vitamin E

is so we can determine whether we will supplement.? ? Best of luck to you!

[childrensapraxiane t] Re: completely non-verbal

I would never give my child anything without speaking with his pediatrician

first. I talked to him several times before starting the ProEFA. Thank you for

your concern.

Sincerely,