Question for

[Guest guest]

> I bought the book for her and I was wondering if she could take

> the No-Fenol in addition to the diet. Or, should we just try one

> or the other alone at first?

The No-Fenol with the diet is probably a good idea. If it was me, I

would start the No-Fenol first, and then remove the big ticket food

items, or the ones most convenient. Probably because this would be

convenient for me to do, and with the enzymes, I wouldn't need to

remove as much. Changing your diet is hard and takes some getting

used to. The enzymes would be helping the gut while making the

adjustments so this may provide more thorough healing in the

beginning as well as make the transition more comfortable.

> I'm wondering if the No-Fenol would accomplish anything on the SCD,

> if the carbohydrates it digests (in theory) wouldn't be in the

> digestive tract while following this diet.

I am not comfortable saying No-Fenol is a direct or best substitute

for the SCDiet, because I don't know that it targets all the same

things as the diet does. Part of what the SCD proposes is that the

colitis arises from gut pathogens. There may be more to it than just

that. It may be just nice to have some relief from a really strict

diet.

Let me know how it goes.

.

[Guest guest]

Question for

At what age Tanner was released from Speech therapy?

Thanks a lot

Lana

[Guest guest]

Hi Lana,

Tanner is now 8 years old, finishing up mainstream second grade

where he was an excellent student -had another great year. Tanner

this year again attended a private school in Florida which has an

accelerated academics curriculum so I'm not sure how much speech

therapy he would qualify for in the public school system at this

point. I do know that when Tanner was in the public school, he

reached all his OT goals by the end of mainstream kindergarten.

Insurance and we pay for Tanner to receive at his private school two

sessions of speech therapy a week through his private speech

therapist, and he less often sees Dr. Renei Jonas in Boca Raton who

oversees his progress in speech as well. By all accounts his speech

impairment is no longer even moderately affecting his social or

academic abilities, it would today be considered a mild impairment

or at most mild to moderate impairment at this point.

So could Tanner stop therapy? Probably, but it's funny how your

goals change as your child improves. Years ago my goal was that

Tanner could " talk and be understood " I used to say if he could do

that I'd be happy. So if you have a nonverbal child right now your

goal may be " I just want him to talk " then " talk and be understood "

and then " talk quickly in longer sentences when he wants and be

understood " and then " talk like everyone else " Goals change as they

change -give them the chance to be the best they can be.

Therapy continues to help him improve. It continues to provide

Tanner with strategies to help him overcome as he ages and is

expected to read, write and communicate with more and more

sophisticated language. We want Tanner to do well all the time,

not just when he has motor cues. Tanner does much better with

speech when he has cues -like reading -or when he knows the words to

the song or phrase. He does well with memorization -like saying the

Pledge of Allegiance as he does on the Talking Page.

Guess it's time for me to do Tanner's update on the Talking Page.

I'll probably have him read from a book (so Suzi you can let me know

how many words per minute it sounds like to you)

http://www.debtsmart.com/talk/tanner.html

When it's in his motor memory -he can say it well ...and fast.

Tanner loves to talk fast when he can. I still hear him practicing

speaking in the bathroom -probably to the mirror still. He'll

memorize a phrase and say it over and over -trying to say it faster

and faster.

This is why reading has been so awesome for him! When he's trying

to just talk without any cues or support, trying to express himself

spontaneously, Tanner at times breaks down a bit, keeps his thoughts

short and at times a bit cryptic still. Through therapy however he

has learned to stop and gather his thoughts and says " wait " and

tries to rephrase. It takes time to get things out of Tanner at

times. And there are other reasons for the continued support.

One thing I've learned by running this group is that not enough

attention is placed on apraxic or other speech impaired children as

they grow.

I learned that with apraxic children, even when they were taught

through years of hard work and therapy to speak well and blend with

peers as they grew up, most didn't auto substitute more

sophisticated language as the rest -so sounded more childish. So we've been

working on that with Tanner -getting more sophisticated language

into his motor memory.

Tanner doesn't mind being one of the only kids in the school with a

speech impairment. Special needs in the school he is in doesn't

have a stigma because just about the only type of " special needs " child in the

school is gifted.

Apraxia is the most severe expressive impairment of speech -so if

one can overcome that -any other expressive impairment of speech is

almost certainly possible to overcome. And I'd say that Tanner's

pretty much overcome it...and he didn't just have verbal apraxia.

http://www.cherab.org/information/familiesrelate/letter.html

=====

[Guest guest]

what is tyhe difference between pro epa and pro efa? What side effects?

[Guest guest]

Hi ,

Good question.

(Just want to clarify for new people

This is regarding ProEPA -not ProEFA. They are different formulas.)

You can try to add the ProEPA very slowly this time and keep a

journal -at times we forget changes. Mark down everything both

negative as well as positive because again what we view as negative

may in fact viewed as a positive sign in the future.

Start with just a drop of the ProEPA mixed into the ProEFA and

observe (put the rest of the capsule in the refrigerator in a

ziplock bag till the next uses)

Gradually increase to two drops if you can and again observe. Do

this until you are up to use of the entire capsule of ProEPA a day.

On the other hand some report that as their child ages -they are

able to get the ProEPA in without any changes in behavior -and

without gradual introduction. May want to keep in mind that most

signs of behavioral changes are reported to be temporary by those

who stick it out. How long did you wait till you stopped the first

time? No matter what the answer - no reason to drive yourself crazy

when you can just stop as you did -or even better just reduce the

oils and then as you can gradually increase them.

When he reaches a plateau and you can't use ProEPA for whatever reason

-I would only then just go to three ProEFA.

And thought I'd post this Q & A that came to CHERAB since it's

another good question on the EFA topic (just took out names/email

for privacy):

~~~~~~~~~~~~~~start

If you are seeing moderate to dramatic surges on just the one

capsule then I would keep it there till he reaches a plateau -which

should be in another month to 4 months. Increase it then to the two

and you'll see more surges just as I wrote. I say that for 4-5 year

olds because at times some larger or older children need a bit

higher dosage for results.

Hope that helps!

Message for

[Guest guest]

>

> I'm still interested in what you said about LDN causing withdrawals.

> We're (at least I am) under the impression that the side effects of

> LDN are not really a concern when compared to the side effects of 50mg

> naltrexone, because we're taking such a small amount of the drug.

=====

,

My doctor had a patient who wanted LDN for her MS and I told her and my doctor

told her she needed to be off all narcotics 14 days before starting LDN. She

didn't believe us. She took 4.5mg of LDN and it put her into withdrawal and

landed her in the emergency room in bad shape. Her blood pressure bottomed out

and a whole host of other negative reactions. Dr. Bob Lawrence from the UK who

takes LDN himself warns people to be off all narcotics for 14 days before

starting LDN.

[Guest guest]

Looks like good advice then, thank you .

> ,

>

> My doctor had a patient who wanted LDN for her MS and I told her and

my doctor told her she needed to be off all narcotics 14 days before

starting LDN. She didn't believe us. She took 4.5mg of LDN and it

put her into withdrawal and landed her in the emergency room in bad

shape. Her blood pressure bottomed out and a whole host of other

negative reactions. Dr. Bob Lawrence from the UK who takes LDN

himself warns people to be off all narcotics for 14 days before

starting LDN.

>

[Guest guest]

Hi ,

Hi, I have been giving my son, (will be 3 in Nov), 2 ProEFAs and 1 EPA capsules

since few months, alongwith 1 multivitamin dropper, once a day. He is responding

very well. We can understand him most of the time. He is making 3-4 word

sentences. Although he is omitting beginning consonants, it is still pretty

clear. And he is on speech therapy 2x week 30 minute sessions. Most beautiful

thing is he answers questions very spontaneously.

Thank you very much for all your help.

I have two questions :

1. I have noticed two white spots, one big and one small near his eye, Could

that be caused by Fish oil. Being Indian in origin, his complexion is not very

fair, so the spots are noticeable.

Could they be caused by : not drinking two much milk, because he is only

drinking about 8-10 oz of milk per day.

2. When I tried doubling his dose of Fish oil, he just stops eating, so I had to

come back to once a day desage again.

Also, I have an appointment with the neurodevelopmental Ped this week. What kind

of questions, I would ask. This meeting is very important, because I had to wait

for 3 months to get this appointment. Should I mention Fish Oil and Vitamin E to

the doctor ?

Regards,

Manjeet

[ ] Re: QUIESTION ABOUT VITAMIN E

> >

> > You want to start out with at least 400 IU. It is harmless. Most

> > people (MDs or pharmacists) will have no clue. Our kids are

> > different. The fact that there is a response to vit E suggests

> there

> > is something deficient. But 400 IU is totally safe. Up to 1000

> > grams is totally safe according to vitamin E experts I have been

> > talking to. I have done a great deal of research before putting

my

> > child on this. We are on higher doses than I would feel

> comfortable

> > suggesting anyone try. But at the same time, we cut about 200IU

a

> > day (because we switched to a alpha/gamma combo) - and we have

> lost

> > intelligibility. I started noticing in into the second day, but

> last

> > night I was only understanding him 25-50 % of the time and he

was

> > sounding VERY apraxic, whereas he had become nearly 100%

> > intelligible to me and conversational. Now I'm getting shorter

> > phrases. I am going to go back to the brand and dose I was using

> > before, because it seemed to be working. This is all new for me

> > too. But he is as sensitive to decreases in vit E as he was to

> fish

> > oil. I am not seeing and changes in coordination, but not going

to

> > wait around for that to happen to. -

> >

> >

> >

> >

> >

> >

> > Amy

> >

> >

> > ------------ --------- --------- ---

> > Get your own web address for just $1.99/1st yr. We'll help.

> Small Business.

> >

> >

[Guest guest]

Hi ,

Hi, I have been giving my son, (will be 3 in Nov), 2 ProEFAs and 1 EPA capsules

since few months, alongwith 1 multivitamin dropper, once a day. He is responding

very well. We can understand him most of the time. He is making 3-4 word

sentences. Although he is omitting beginning consonants, it is still pretty

clear. And he is on speech therapy 2x week 30 minute sessions. Most beautiful

thing is he answers questions very spontaneously.

Thank you very much for all your help.

I have two questions :

1. I have noticed two white spots, one big and one small near his eye, Could

that be caused by Fish oil. Being Indian in origin, his complexion is not very

fair, so the spots are noticeable.

Could they be caused by : not drinking two much milk, because he is only

drinking about 8-10 oz of milk per day.

2. When I tried doubling his dose of Fish oil, he just stops eating, so I had to

come back to once a day desage again.

Also, I have an appointment with the neurodevelopmental Ped this week. What kind

of questions, I would ask. This meeting is very important, because I had to wait

for 3 months to get this appointment. Should I mention Fish Oil and Vitamin E to

the doctor ?

Regards,

Manjeet

[ ] Re: QUIESTION ABOUT VITAMIN E

> >

> > You want to start out with at least 400 IU. It is harmless. Most

> > people (MDs or pharmacists) will have no clue. Our kids are

> > different. The fact that there is a response to vit E suggests

> there

> > is something deficient. But 400 IU is totally safe. Up to 1000

> > grams is totally safe according to vitamin E experts I have been

> > talking to. I have done a great deal of research before putting

my

> > child on this. We are on higher doses than I would feel

> comfortable

> > suggesting anyone try. But at the same time, we cut about 200IU

a

> > day (because we switched to a alpha/gamma combo) - and we have

> lost

> > intelligibility. I started noticing in into the second day, but

> last

> > night I was only understanding him 25-50 % of the time and he

was

> > sounding VERY apraxic, whereas he had become nearly 100%

> > intelligible to me and conversational. Now I'm getting shorter

> > phrases. I am going to go back to the brand and dose I was using

> > before, because it seemed to be working. This is all new for me

> > too. But he is as sensitive to decreases in vit E as he was to

> fish

> > oil. I am not seeing and changes in coordination, but not going

to

> > wait around for that to happen to. -

> >

> >

> >

> >

> >

> >

> > Amy

> >

> >

> > ------------ --------- --------- ---

> > Get your own web address for just $1.99/1st yr. We'll help.

> Small Business.

> >

> >

[Guest guest]

You can definitely tell your neurodevelopmental ped...however they

may look at you like you are nuts...or they will say " excellent " -

it seems to be helping some kids with communication disorders.

As far as white spots, your guess is as good as mine.

> Hi ,

>

> Hi, I have been giving my son, (will be 3 in Nov), 2 ProEFAs and 1

EPA capsules since few months, alongwith 1 multivitamin dropper,

once a day. He is responding very well. We can understand him most

of the time. He is making 3-4 word sentences. Although he is

omitting beginning consonants, it is still pretty clear. And he is

on speech therapy 2x week 30 minute sessions. Most beautiful thing

is he answers questions very spontaneously.

>

> Thank you very much for all your help.

>

> I have two questions :

>

> 1. I have noticed two white spots, one big and one small near his

eye, Could that be caused by Fish oil. Being Indian in origin, his

complexion is not very fair, so the spots are noticeable.

>

> Could they be caused by : not drinking two much milk, because he

is only drinking about 8-10 oz of milk per day.

>

> 2. When I tried doubling his dose of Fish oil, he just stops

eating, so I had to come back to once a day desage again.

>

> Also, I have an appointment with the neurodevelopmental Ped this

week. What kind of questions, I would ask. This meeting is very

important, because I had to wait for 3 months to get this

appointment. Should I mention Fish Oil and Vitamin E to the doctor ?

>

> Regards,

> Manjeet

[Guest guest]

You can definitely tell your neurodevelopmental ped...however they

may look at you like you are nuts...or they will say " excellent " -

it seems to be helping some kids with communication disorders.

As far as white spots, your guess is as good as mine.

> Hi ,

>

> Hi, I have been giving my son, (will be 3 in Nov), 2 ProEFAs and 1

EPA capsules since few months, alongwith 1 multivitamin dropper,

once a day. He is responding very well. We can understand him most

of the time. He is making 3-4 word sentences. Although he is

omitting beginning consonants, it is still pretty clear. And he is

on speech therapy 2x week 30 minute sessions. Most beautiful thing

is he answers questions very spontaneously.

>

> Thank you very much for all your help.

>

> I have two questions :

>

> 1. I have noticed two white spots, one big and one small near his

eye, Could that be caused by Fish oil. Being Indian in origin, his

complexion is not very fair, so the spots are noticeable.

>

> Could they be caused by : not drinking two much milk, because he

is only drinking about 8-10 oz of milk per day.

>

> 2. When I tried doubling his dose of Fish oil, he just stops

eating, so I had to come back to once a day desage again.

>

> Also, I have an appointment with the neurodevelopmental Ped this

week. What kind of questions, I would ask. This meeting is very

important, because I had to wait for 3 months to get this

appointment. Should I mention Fish Oil and Vitamin E to the doctor ?

>

> Regards,

> Manjeet

[Guest guest]

Go for it. I suspect if you've seen benefits so far, you will be very

happy with the next surge. There was a HUGE difference when we went

from 800 iu to 1200 iu a day. Hope you see some good gains. I don't

get tired of hearing these vit E response stories. Its wonderful!

> Hello --

> I read w/ fascination and optimism your posts about the miraculous

> benefits of Vit. E! It gives me so much hope! I'm sure you're tired

of

> answering so many questions about it but I'm hoping you can help me

> out. I've been giving my son the Vit. E--2 capules every morning,

along

> w/ the fish oils (he was on 6 NN EFA's, 3 NN EPA's and 2 GNC

> brand 'Natural E 400-- he recently began refusing the fish oils--

was

> putting all this into his morning juice, now I've found if I break

up

> the doseage over the day, the fishy smell isn't as noticeable). My

> question - should I up the dose of the Vit. E? I think you've

mentioned

> that it's safe to give up to 1500, so I think I may be safe in

adding

> another capsule, but want to make sure. He has severe apraxia (no

other

> issues besides sensory) and is 4 yrs. old. When he's taking all of

> these his speech (and his physical coordination, I've noticed) is

> noticeably much better! I guess I'm ready for the next surge....--

>

>

[Guest guest]

How much vit e would you recommend for a 17 month baby weighing 21 pounds?

Thanks Robin

[Guest guest]

17 month old...tough to have an apraxia diagnosis at that age?

You might want to do fish oil + vit E

omega 3/6/9 (2 capsules) + 1 capsule pro-EPA

400 iu alph-d-tocophorol

Or you could by the 200 alpha/200 gamma that others on this site use

and go from there. Consider bumping doubling the dose at 24 months if

there are still problems.

This seems to work well for apraxia, but will not be the fix for every

communication disorder. I don't think its a good idea to be giving high

dose vit E to kids who aren't responding...because if they don't have a

vit E issue, they don't need it. Its just hard to have a diagnosis at

that young an age...but the above dose should be fine. If

apraxia...the younger the treatment the better as far as reversal.

Catch -22. Good luck. -

> How much vit e would you recommend for a 17 month baby weighing 21

pounds?

> Thanks Robin

>

>

>

[Guest guest]

Hi :

Forgive me, I am cutting in here relating to your response below to

lauren. Your posts are always very helpful to me.

My daughter has just been diagnosed with apraxia, sensory integration

dysfunction and auditory processing disorder at 20 months. (At 9

months she was diagnosed with hypotonia (low muscle tone.) The

developmental ped I saw recently strongly suspects autism. (But the

therapists we see weekly ST, OT & PT are not so sure it's autism.)

I see below your recomendation of finding a good neurodevelopmental

ped. I am at the point of wanting a second opinion and further

direction. I liked the developmental ped I went to and she will do

the ADOS test when Amy turns 2 but can't really offer further

diagnostics.

I am a bit confused about the different types of doctors out there.

I've been hearing a lot about neuropsychologists that do the

diagnostic testing and know of some around me that I am thinking of

looking into. Is this the proper type of doctor that I should be

looking into? My general pediatrician's office referred me to a

developmental ped that specializes in autism and could do the ADOS

test when Amy turns the appropriate age. But again, I am wondering

if going to an " autism specialist (developmental ped) " specifically

would be limiting me in case it is something else.

And there is also an autism center near me with a good reputation

that again will do a 5 visit evaluation to see if it's autism and

they provide a very nice report but it seems more of a test for only

autism.

Currently we get our therapy services through EI but I don't think

they will cover diagnostic testing other than the 1 visit I recently

had with a developmental ped. (Although I am looking into it at our

annual review next month.) I know the diagnosics are expensive but

really want to have it completed to better plan therapies.

Would appreciate any input you could provide. (Hope this e-mail makes

sense!!!)

Kind regards,

Ann & Amy (20 months)

> > > >>

> > > >>

> > > >>

> > > >>>Hi, my name is and I have a six year old son that has

> oral

> > > >>>apraxia. He hasn't been officially diagnosed with apraxia,

but

> > > >>>

> > > >>>

> > > >his

> > > >

> > > >

> > > >>>speech therapist and pathologist at school have both agreed

> for

> > > >>>educational purposes they will classify him as having

apraxia.

> > > >>>

> > > >>>

> > > >This is

> > > >

> > > >

> > > >>>all knew to me, I have done some research on the internet

> about

> > > >>>apraxia, but I'm pretty much at a stand still at what to do

> next.

> > > >>>Right now my son uses a word book that we have made for him

to

> > > >>>

> > > >>>

> > > >help

> > > >

> > > >

> > > >>>communicate. We enforce him to say each word as he points to

> the

> > > >>>object. I'm asking for any help or advice you may have.

> > > >>>

> > > >>>Thank you

> > > >>> &

> > > >>>

> > > >>>

> > > >>>

> > > >>>

[Guest guest]

I was at the doctor's tuesday and on the tv they had a health channel where they

said that O-mega three fish oil has blood thinning properties.  Now I take only

one a day in the morning but I also take a baby aspirin.  Should I take the baby

aspirin at night or am I safe taking both in the morning?  I figured it was a

valid question since I'm sure there are others on the list who take fish oil and

baby aspirin.

 

Joyce