Question for the group

[Guest guest]

My arms go numb when I lay down if I don't have my neck perfectly straight. If

I don't sleep with my wrists straight, my hands go to sleep and it hurts like

heck when they are waking up. They say that is carpal tunnel syndrome. My GP

says the arm thing is from the herniated disks in my neck.

>

> Hey everyone!

> Well, I always seem to get these weird symptoms and I don't know if this is RA

or not --- as I don't see my new RA Doc for 2 more weeks.  I wake up in the

middle of the night and sometimes, my hand will be numb (although I do sleep on

my sides, it's never the side I was sleeping on) . Sometimes with or without

THAT symptom, I will have sudden and very excruciating pain in my wrists &

hands. Almost as if someone just took a baseball bat and crushed my hands. There

is nothing under the sun except for a percocet that works for it and even that

only makes it a bit more tolerable. The pain can last anywhere from 10

loooooonnnnggg minutes or 2-3 hours.

>  

> My old RA doc acted like the pain was RA and only nodded his head about the

numbness in my hands.  Funny thing though, after my infusions of Rituxan - I

have not had that pain for about a year until the wee hours of this morning. I

don't think I can recall ever being in that much pain.

>  

> Does anyone else ever have this or I am just weird? (hehehe)

> Thanks for any help you can offer~~

> in SC

>

>

> ltdavis_jrdavis@...

>

>

>

>

>

[Guest guest]

Hi All,

With me, I would get that horrendous pain when my joints were becoming deformed,

especially my hands and feet. It's the muscles and tendons being pulled over to

the side. I had proper splints made by the hospital which I wore constantly day

and night, but I still got badly deformed hands and feet. I also wore a neck

brace in bed but a neck collar during the day, but still made no difference. The

top and bottom is, thankfully they are more aggressive in their approach now,

albeit too late for me. I suppose the good thing is that once my hands and feet

could go no further the pain stopped. I certainly wouldn't ignore that pain and

get it checked out. I found that by sleeping upright at 90 degrees with a nest

made by pillows and pillows cushioning your arms, that was the only way I could

sleep. I know " they " frown on pillows under your knees, but that was the only

way I could get comfortable.

Now I have a tempur mattress, absolute bliss, can't wait to get into bed each

night. I really envy your heated pool Barbara. I had a few hydrotherapy

sessions, and although I had to be hoisted in and out the pool, once I was in

the water for about 5 minutes, I could actually walk under the water.

Unfortunately, it was expensive, but a heated swimming pool is being built near

where I live, and it will have wheelchair access, so I'll be a water baby soon.

love and hugs to you all

sarah

________________________________

From: eandsspivey <emilyspivey@...>

Sent: Wednesday, 19 August, 2009 1:46:54

Subject: [ ] Re: Question for the group

My arms go numb when I lay down if I don't have my neck perfectly straight. If

I don't sleep with my wrists straight, my hands go to sleep and it hurts like

heck when they are waking up. They say that is carpal tunnel syndrome. My GP

says the arm thing is from the herniated disks in my neck.

>

> Hey everyone!

> Well, I always seem to get these weird symptoms and I don't know if this is RA

or not --- as I don't see my new RA Doc for 2 more weeks. I wake up in the

middle of the night and sometimes, my hand will be numb (although I do sleep on

my sides, it's never the side I was sleeping on) . Sometimes with or without

THAT symptom, I will have sudden and very excruciating pain in my wrists &

hands. Almost as if someone just took a baseball bat and crushed my hands. There

is nothing under the sun except for a percocet that works for it and even that

only makes it a bit more tolerable. The pain can last anywhere from 10

loooooonnnnggg minutes or 2-3 hours.

>

> My old RA doc acted like the pain was RA and only nodded his head about the

numbness in my hands. Funny thing though, after my infusions of Rituxan - I

have not had that pain for about a year until the wee hours of this morning. I

don't think I can recall ever being in that much pain.

>

> Does anyone else ever have this or I am just weird? (hehehe)

> Thanks for any help you can offer~~

> in SC

>

>

> ltdavis_jrdavis@ ...

>

>

>

>

>

[Guest guest]

Hi : I am so glad that soon you will be able to use a heated pool.

As you know, the warm water feels so great, and being able to walk in

the water pain free is a wonderful feeling. See, part of your dream is

coming true for you!

I too, love the Tempur mattresses. I had one while in rehab. and I will

buy one like that when my mattress needs to be replaced. It is like

sleeping on a cloud.

I hope you are doing good, and having a nice day. Talk soon. Wishing

you continued success on your meds..

Hugs,

Barbara

>

[Guest guest]

Tommy

Have you tried gf cf and biomed?............

Sent from my phone

On Jan 15, 2010, at 11:05 AM, " wetworks73 " <wetworks73@...> wrote:

> Hello,

>

> Our 10 yo daughter, diagnosed PDD-NOS, moderate MR who is completely

> non-verbal has recently started to attempt imitating sounds as well

> as form some on her own. Just to be clear, she always seemed unable

> to make that brain/mouth connection, but was always able to make

> sounds. She would try to move her mouth, but she couldn't get any

> sounds out. She is now approximating " mama " and able to repeat it

> most times on command. Perhaps that connection (pathway?) is finally

> being made and we are looking to further nurture it. What would many

> of you recommend be the next steps taken, including any form of

> supplementation? Thank you in advance for any guidance you may

> provide us.

>

> -Tommy

>

>

[Guest guest]

Hello,

I have posted this question before and received no response. I am currently

giving my 24 month old son 2 capsules of the NN Omega 3,6,9 Junior fish oils. I

have noticed that some of you are giving both ProEFA and ProEPA to your

children. I am trying to figure out if I should add the ProEPA? I bought a

bottle of the ProEPA for NN but am not sure if I should cut back on the 2

capsule of the Junior ProEFA or just add the ProEPA on top of them? Does anyone

have a recommendation of total DHA and EPA dosage (in mg) for a 32 lb child? I

know the suggested ration is 2:1, but am not sure of total milligrams. We are

going to see his Pediatrician next week and I would like to have a suggested

dose to discuss with him.

Any suggestions would be greatly appreciated!

Thank you!

Illinois

________________________________

[Guest guest]

nordic naturals has a deep sea fish oil you can by on-line and you might find it

locally but we and many of our friends have noticed one teaspoon a day really

helps with speech.  Congratulations that she is showing interest and said mama!

CAthy

From: wetworks73 <wetworks73@...>

Subject: [ ] Question for the group

Date: Friday, January 15, 2010, 9:05 AM

 

Hello,

Our 10 yo daughter, diagnosed PDD-NOS, moderate MR who is completely non-verbal

has recently started to attempt imitating sounds as well as form some on her

own. Just to be clear, she always seemed unable to make that brain/mouth

connection, but was always able to make sounds. She would try to move her

mouth, but she couldn't get any sounds out. She is now approximating " mama " and

able to repeat it most times on command. Perhaps that connection (pathway?) is

finally being made and we are looking to further nurture it. What would many of

you recommend be the next steps taken, including any form of supplementation?

Thank you in advance for any guidance you may provide us.

-Tommy

[Guest guest]

my daughter is 29 pounds and my DAN! dr recommended for us to increase her NN to

the most concentrated one.  We use one with 1126mg or 25% DHA and 1626 or 35%

EPA.  We have noticed great results.

CAthy

From: Stahl, <katie.m.stahl@...>

Subject: RE: [ ] Question for the group

" " < >

Date: Friday, January 15, 2010, 12:22 PM

 

Hello,

I have posted this question before and received no response. I am currently

giving my 24 month old son 2 capsules of the NN Omega 3,6,9 Junior fish oils. I

have noticed that some of you are giving both ProEFA and ProEPA to your

children. I am trying to figure out if I should add the ProEPA? I bought a

bottle of the ProEPA for NN but am not sure if I should cut back on the 2

capsule of the Junior ProEFA or just add the ProEPA on top of them? Does anyone

have a recommendation of total DHA and EPA dosage (in mg) for a 32 lb child? I

know the suggested ration is 2:1, but am not sure of total milligrams. We are

going to see his Pediatrician next week and I would like to have a suggested

dose to discuss with him.

Any suggestions would be greatly appreciated!

Thank you!

Illinois

____________ _________ _________ __

[Guest guest]

The ProEFA Jr (or Omega369 Jr) and the regular are the same thing -but twice as

expensive and in my opinion only should be used if giving a half dosage or if

you want to teach your child how to swallow the capsules unless you are willing

to pay twice as much for a cute bottle. One capsule of ProEFA to put it in

perspective is about equivalent to the dosage the FDA approved for infant

formula...so in fact if you give your toddler one capsule of ProEFA Jr. you are

giving them a 1/2 dosage of what a baby would get from his EFA enriched formula.

To put it more simply -there is no such thing as a child's formula. Fish oil is

fish oil...and while I have joked about the marketing for Nordic with names like

DHA for their DHA -the strategy they came up with a few years ago for their " Jr "

line was brilliant on their part as they kind of got to double their profits.

Again if you are trying to teach your child to swallow the capsules- totally

worth twice the amount of money..but if not you are squeezing out twice as many

capsules. So when some of us use the 2/1 ratio of ProEFA and ProEPA for those

using Jr you'd have to use 4/1 ratio.

It's good to run by your child's ped and more are aware of the importance of the

PUFAs today...but not all really have that much knowledge about dosage for

what's good for apraxia etc. What makes me feel good about it today is that

we've used it here in even mega dosages for over a decade and there are no side

effects reported -unless you include thing like the few that report temporary

mild loose stools or more hyper. There's probably more oil on a slice of pizza

then what we give some of the kids here in fish oil. Put it this way...if we

blot the oil off a piece of pizza and don't freak out and run to the doctor to

ask if that amount of oil would hurt our child if they ate it...why are we as a

public so afraid of fish oil? Boy do we need research!!!

=====

[Guest guest]

Tommy OMG your daughter sounds apraxic!!! And she's 10!!! That will once again

be so sad if this much time has gone by and that wasn't picked up but please

explore it as clearly you have nothing to lose.

I'd really love if you can share more of your daughter's past therapies and

evaluations. We are currently as a group learning more and watching in

amazement the progress of 25 year old Ketchum who went through most of

her life misdiagnosed as mentally retarded and autistic with little to no

progress no matter how many therapy, therapists, doctors, medications, etc. It

ends up that she was misdiagnosed and is in fact globally apraxic with TBI and

due to lack of any appropriate therapies as a child and teen, and due to the ABA

therapy she received she now also suffers from post traumatic stress on top of

it all. Her family sued the PA school system for abuse and won because as of 17

years old her mother found our group -realized her daughter was NOT mentally

retarded or autistic -took Mel for evaluations from experts who were

knowledgeable about various multifaceted neurologically based communication

impairments- not just autism and MR and that's when she finally got the

appropriate diagnosis and started appropriate therapies. I know for a fact that

Robin would love to speak with you -help you in any way. She shares her email

all the time in her blog rcketchem@...

You can read Mel's blog by going to http://www.pursuitofresearch.org and

clicking on blog or going direct to

http://littlemermaidmelanie.wordpress.com/about and on the side you can read day

by day or week by week progress. What I find most interesting is just recently

Mel's dad unintentionally lowered Mel's dosage of the nutriiveda from 4 to 2

scoops a day and she once again went back to being unresponsive,

uncommunicative, basically just wanting to sit on the couch all day watching TV

with no facial expression and needing assistance once again to eat with a spoon,

get dressed etc.

Thing is that progress has been extremely slow until about a month ago when I

introduced Robin to nutriiveda which has greatly helped my son Tanner...and it

was by mistake I learned this.

I do believe you should explore the fish oils too of course -here's a great

basic 101 archive http://www.facebook.com/topic.php?uid=115029735601 & topic=7401

Mel is one of the children in this group that had mild surges on the fish oils

-but to date the only thing that has made such a remarkable difference and in

just one month is this nutriiveda which could be explained by recent research on

the amino acids and protein's effect on neuro repair (just one article on this)

http://www.sflorg.com/comm_center/medical/p974_99.html -or perhaps the turmeric

which there was research to show it's now being used as a treatment for

Alzheimer's.

http://journals.cambridge.org/action/displayAbstract?fromPage=online & aid=5154664

Am looking forward to hearing more from you -if we are looking at (yet another)

misdiagnosis- at least you can catch it at 10 and not any God forbid later age!!

=====

[Guest guest]

Thank you, !

Illinois

________________________________

From:

[mailto: ] On Behalf Of Christiansen

Sent: Friday, January 15, 2010 1:40 PM

Subject: RE: [ ] Question for the group

my daughter is 29 pounds and my DAN! dr recommended for us to increase her NN to

the most concentrated one. We use one with 1126mg or 25% DHA and 1626 or 35%

EPA. We have noticed great results.

CAthy

From: Stahl,

<katie.m.stahl@...<mailto:katie.m.stahl%40thermofisher.com>>

Subject: RE: [ ] Question for the group

To:

" <mailto: %40groups.co\

m> "

< <mailto: %40groups.co\

m>>

Date: Friday, January 15, 2010, 12:22 PM

Hello,

I have posted this question before and received no response. I am currently

giving my 24 month old son 2 capsules of the NN Omega 3,6,9 Junior fish oils. I

have noticed that some of you are giving both ProEFA and ProEPA to your

children. I am trying to figure out if I should add the ProEPA? I bought a

bottle of the ProEPA for NN but am not sure if I should cut back on the 2

capsule of the Junior ProEFA or just add the ProEPA on top of them? Does anyone

have a recommendation of total DHA and EPA dosage (in mg) for a 32 lb child? I

know the suggested ration is 2:1, but am not sure of total milligrams. We are

going to see his Pediatrician next week and I would like to have a suggested

dose to discuss with him.

Any suggestions would be greatly appreciated!

Thank you!

Illinois

____________ _________ _________ __

[Guest guest]

We've shared here what has worked for years which to me is the best way of

knowing what will work best for the majority -there are always exceptions to any

rule...those who get sleepy when they drink coffee for example. My son

regressed on too high of a dosage of fish oils- I tried the ProEFA xtra. Like

anything you can't be too high or too low and if anything I'd start with the

basics and work up. No harm in it as it only takes a day to 3 weeks to find out

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

=====

[Guest guest]

I agree with you on starting on a lower dose and working your way up.  We were

on the lowest dose and went to the medium and now we are on high with great

results.  Our DAN! said we could give up to 6 teaspoons a day of the lowest

dose or move up to the high and only give one or two.  We give only one of the

highest doses of deep sea fish oil.

From: kiddietalk <kiddietalk@...>

Subject: [ ] Re: Question for the group

Date: Friday, January 15, 2010, 1:45 PM

 

We've shared here what has worked for years which to me is the best way of

knowing what will work best for the majority -there are always exceptions to any

rule...those who get sleepy when they drink coffee for example. My son

regressed on too high of a dosage of fish oils- I tried the ProEFA xtra. Like

anything you can't be too high or too low and if anything I'd start with the

basics and work up. No harm in it as it only takes a day to 3 weeks to find out

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

=====

[Guest guest]

Hi,

Yes, we have tried both. With GFCF we saw only a little difference, mainly from

eliminating dairy. On the biomed front, we did and believe this was

beneficial in halting her downward spiral, but we didn't see much in the way of

recovery.

>

> > Hello,

> >

> > Our 10 yo daughter, diagnosed PDD-NOS, moderate MR who is completely

> > non-verbal has recently started to attempt imitating sounds as well

> > as form some on her own. Just to be clear, she always seemed unable

> > to make that brain/mouth connection, but was always able to make

> > sounds. She would try to move her mouth, but she couldn't get any

> > sounds out. She is now approximating " mama " and able to repeat it

> > most times on command. Perhaps that connection (pathway?) is finally

> > being made and we are looking to further nurture it. What would many

> > of you recommend be the next steps taken, including any form of

> > supplementation? Thank you in advance for any guidance you may

> > provide us.

> >

> > -Tommy

> >

> >

>

>

>

[Guest guest]

Unfamiliar with , but my sister runs a diet intervention group and does

ALL KINDS OF biomed, so she might have a lot of ideas for you, but she

doesn't use email. her phone number is 609 485 0033 her name is michele and

you can tell her your sister told you about her. 9am EST - 9pm EST

Her sons have PDD NOS and one is age 10 and recovered now, no more iep just

a 504 for food allergies. You and i oth know what works for one child does

not work for another, but please feel free to call her.

Mer

Mama to Lulu (Apraxia of Speech)

www.beautifulchicken.com

[Guest guest]

You are talking about the highest and lowest doses...what are the highest and

lowest doses exactly (in mg.)  Like I said, I have been giving my son two

capsules of the ProEFA Junior.  Is that considered the lowest dose?

 

Thanks again!

Illinois

From: kiddietalk <kiddietalk (DOT) com>

Subject: [childrensapraxiane t] Re: Question for the group

@groups. com

Date: Friday, January 15, 2010, 1:45 PM

 

We've shared here what has worked for years which to me is the best way of

knowing what will work best for the majority -there are always exceptions to any

rule...those who get sleepy when they drink coffee for example. My son regressed

on too high of a dosage of fish oils- I tried the ProEFA xtra. Like anything you

can't be too high or too low and if anything I'd start with the basics and work

up. No harm in it as it only takes a day to 3 weeks to find out

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

=====

[Guest guest]

For us biomed made speech therapy possible--she had severe apraxia with soft

signs sensory issues, toe walking, upper trunk hypotonia, tantrums and

behavioral problems galore due to her frustrations--but fast forward 3 years

later and she's mainstreamed and only moderate apraxia, communicates fairly

well, tells us what happened in school, her wishes, dreams, negotiates, tells

stories--learning to read and write now. Language problems are now emerging and

we're working on those. What a difference!--i thought she'd never speak. For her

the MB12 shots triggered the progress, her methylation was impaired and needed

that boost.  other supplements also helped and she began to comply in therapy. 

All neurological disorders of unknown etiology have a metabolic component and

neurological and immune functioning can be optimized.  Good luck to everyone!

Elena

From: wetworks73 <wetworks73@...>

Subject: [ ] Re: Question for the group

Date: Friday, January 15, 2010, 10:05 PM

Hi,

Yes, we have tried both.  With GFCF we saw only a little difference, mainly from

eliminating dairy.  On the biomed front, we did and believe this was

beneficial in halting her downward spiral, but we didn't see much in the way of

recovery.

>

> > Hello,

> >

> > Our 10 yo daughter, diagnosed PDD-NOS, moderate MR who is completely

> > non-verbal has recently started to attempt imitating sounds as well

> > as form some on her own. Just to be clear, she always seemed unable

> > to make that brain/mouth connection, but was always able to make

> > sounds. She would try to move her mouth, but she couldn't get any

> > sounds out. She is now approximating " mama " and able to repeat it

> > most times on command. Perhaps that connection (pathway?) is finally

> > being made and we are looking to further nurture it. What would many

> > of you recommend be the next steps taken, including any form of

> > supplementation? Thank you in advance for any guidance you may

> > provide us.

> >

> > -Tommy

> >

> >

>

>

>

[Guest guest]

Hi again Tommy -I'm just curious if you read my message about your daughter

possibly being misdiagnosed. Again I'm sure that Robin would love to speak with

you- and like you they tried many things with Mel that didn't work...because if

it's the wrong diagnosis you won't secure appropriate placement and therapies.

To me your description sounds so much like apraxia. For apraxia we've had

incredible results in this group at all ages with appropriate therapy and

strategies...have you read The Late Talker book?

=====

[Guest guest]

Hi Tommy,

When I read your e-mail my first thought is that your daughter has

been misdiagnosed. I would love to speak with you personally and help

you. Please e-mail

me your phone number and I will call you. I have other friends that

their children also have been misdiagnosed due to having severe global

apraxia.

Looking forward to hearing from you.

Robin

rcketchem@ bellsouth.net

On Jan 16, 2010, at 12:11 AM, kiddietalk wrote:

> Hi again Tommy -I'm just curious if you read my message about your

> daughter possibly being misdiagnosed. Again I'm sure that Robin

> would love to speak with you- and like you they tried many things

> with Mel that didn't work...because if it's the wrong diagnosis you

> won't secure appropriate placement and therapies. To me your

> description sounds so much like apraxia. For apraxia we've had

> incredible results in this group at all ages with appropriate

> therapy and strategies...have you read The Late Talker book?

>

> =====

>

[Guest guest]

Hi ,

My wife and I read your previous reply with great interest. We feel, like you,

that may have been misdiagnosed all this time. We are looking at all

the information that has been provided to us by the list and are formulating

what our next step should be. We most certainly will be contacting some of you.

I haven't read your book, but I am interested. I am also interested in

contacting your co-author about making an appointment (we are in Staten Island).

About Sam; in addition to what I already shared, she is also a year and a half

post-op from tethered cord syndrome detethering. To say that was a difficult

diagnosis to have come across is a severe understatement. This condition most

certainly was responsible for many " pain behaviors " we saw over the years

(head-banging, inconsolable crying, etc). It also contributed to her developing

a neurogenic bladder and suffering cognitive deficits. She also is diagnosed

with a heritable disorder of connective tissue, Ehlers-Danlos classic. We

believe that she also suffers from neuropathy, and we have been looking into

some metabolic abnormalities.

I just want to take the opportunity to thank all that responded with so much

helpful information and insight. Please continue to do so! Thank you again.

-Tommy

>

> Hi again Tommy -I'm just curious if you read my message about your daughter

possibly being misdiagnosed. Again I'm sure that Robin would love to speak with

you- and like you they tried many things with Mel that didn't work...because if

it's the wrong diagnosis you won't secure appropriate placement and therapies.

To me your description sounds so much like apraxia. For apraxia we've had

incredible results in this group at all ages with appropriate therapy and

strategies...have you read The Late Talker book?

>

> =====

>

[Guest guest]

Hello Robin,

Thank you so much for your offer of assistance. I have sent you and email with

my phone number. It's from autismcosupport...

>

> > Hi again Tommy -I'm just curious if you read my message about your

> > daughter possibly being misdiagnosed. Again I'm sure that Robin

> > would love to speak with you- and like you they tried many things

> > with Mel that didn't work...because if it's the wrong diagnosis you

> > won't secure appropriate placement and therapies. To me your

> > description sounds so much like apraxia. For apraxia we've had

> > incredible results in this group at all ages with appropriate

> > therapy and strategies...have you read The Late Talker book?

> >

> > =====

> >

[Guest guest]

Robin and ,

Would one of you explain a bit why you both belive that Tommy's

daughter has been diagnosed from that description?? My daughter makes

tons of sounds but has problems making the right ones. I know that

global apraxia can make a child seem MR.

Nelia

On Jan 16, 2010, at 5:45 AM, Robin Ketchem <rcketchem@...>

wrote:

> Hi Tommy,

>

> When I read your e-mail my first thought is that your daughter has

> been misdiagnosed. I would love to speak with you personally and help

> you. Please e-mail

> me your phone number and I will call you. I have other friends that

> their children also have been misdiagnosed due to having severe global

> apraxia.

> Looking forward to hearing from you.

>

> Robin

>

> rcketchem@ bellsouth.net

>

> On Jan 16, 2010, at 12:11 AM, kiddietalk wrote:

>

> > Hi again Tommy -I'm just curious if you read my message about your

> > daughter possibly being misdiagnosed. Again I'm sure that Robin

> > would love to speak with you- and like you they tried many things

> > with Mel that didn't work...because if it's the wrong diagnosis you

> > won't secure appropriate placement and therapies. To me your

> > description sounds so much like apraxia. For apraxia we've had

> > incredible results in this group at all ages with appropriate

> > therapy and strategies...have you read The Late Talker book?

> >

> > =====

> >

[Guest guest]

Nelia to me it's the inconsistency that stood out. I mean it's one thing if a

child can't- ever. It's another if sometimes yes and sometimes no -and in

Tommy's own description of his (ten year old) daughter he says " She is now

approximating " mama " and able to repeat it most times on command " and another

classic apraxia red flag " She would try to move her mouth, but she couldn't get

any sounds out "

That together with the PDD and moderate MR diagnosis -neither diagnosis do I

care for- I mean she's either autistic or not- what does PDD mean and is her IQ

really low enough with appropriate testing by someone that is aware of

communication impairments (like say someone that works with the hearing

impaired) that she really is " moderate MR " And here's the definition of the

difference between mild and moderate MR

Mild mental retardation

Approximately 85% of the mentally retarded population is in the mildly retarded

category. Their IQ score ranges from 50-75, and they can often acquire academic

skills up to the 6th grade level. They can become fairly self-sufficient and in

some cases live independently, with community and social support.

Moderate mental retardation

About 10% of the mentally retarded population is considered moderately retarded.

Moderately retarded individuals have IQ scores ranging from 35-55. They can

carry out work and self-care tasks with moderate supervision. They typically

acquire communication skills in childhood and are able to live and function

successfully within the community in a supervised environment such as a group

home.

http://medical-dictionary.thefreedictionary.com/Moderate+mental+retardation

The way I look at it coming from the situation where there were ignorant

professionals who wanted to shove my own son Tanner into that grouping way back

when he was first going into kindergarten...and knowing some of the stories here

-by the grace of God go many of our kids. If parents don't know how to advocate

to get their children the benefit of the doubt, appropriate services and

placement- just about any of our kids that are apraxic by the age of 10 could

probably end up with the diagnosis of PDD moderate MR...that's sadly due to lack

of awareness.

I'm not saying I know for a fact that Tommy's daughter has apraxia -but clearly

there's no harm in checking into it. It would not be the first time that we

learn the (not) shocking news that Tommy's daughter is not autistic and has an

IQ that may be around normal -has apraxia or some other impairment of speech

and global motor planning or weakness issues -and just needs appropriate therapy

and approaches. Ask yourself this question because I do...where would any of

YOU be today if from the time you were little you were schooled and treated as

if you could only reach the ability of moderate MR...how long till your parents

gave up on you? How long till you give up on yourself? Robin wonders why I've

never given up on and that is exactly the reason. Because you first

have to overcome the damage of misdiagnosis. And until we have awareness that

lack of communication does NOT necessarily mean lack of understanding, lack of

receptive and cognitive ability...our children will continue to fall through the

cracks.

And what if you give a child like or Tommy's daughter a chance and

another and another and years later nothing...to me -than you can look back and

never have to think " if only... " My son Dakota (not Tanner) had a 6 month delay

at 2 and his neurologist Dr. Trevor DeSouza told me and my husband nobody would

know at that point if it was permanent due to the huge amount of injury he

sustained during delivery. And what did he tell us to do? " Expose Dakota to as

much as possible, brain stimulation, music, activities, computer, colors, dance

everything " ...and we did. Dakota was tested in 3rd grade by his school at

99th percentile -but yes with ADHD he is at times the absent minded

professor...but we avoided medications because unless we really really have to

-we are anti medication and went the fish oil route with him which worked all

these years. We just started him on the Nutriiveda as well and based on others

with ADHD -well will keep all posted. The point is that while others considered

Dakota the " miracle child " he was proof to me that even when experts see little

hope...the human body is a miracle and we don't fully understand every aspect of

the brain. If for Mel it's not too late at 25 then clearly it's not too late at

10

I know that Robin and Tommy are in contact so the beauty is we are all helping

each other as a group in this way.

=====

[Guest guest]

I'm always amazed when I read something like this that it helps so much.

Never will I give up on my child I hate that he has a diagnose of cognitive

delay when he has behaviors that its hard for them to test him to really

know and that they don't take the apraxia into consideration. Leona

On Sat, Jan 16, 2010 at 11:17 PM, kiddietalk <kiddietalk@...> wrote:

> Nelia to me it's the inconsistency that stood out. I mean it's one thing

> if a child can't- ever. It's another if sometimes yes and sometimes no -and

> in Tommy's own description of his (ten year old) daughter he says " She is

> now approximating " mama " and able to repeat it most times on command " and

> another classic apraxia red flag " She would try to move her mouth, but she

> couldn't get any sounds out "

>

> That together with the PDD and moderate MR diagnosis -neither diagnosis do

> I care for- I mean she's either autistic or not- what does PDD mean and is

> her IQ really low enough with appropriate testing by someone that is aware

> of communication impairments (like say someone that works with the hearing

> impaired) that she really is " moderate MR " And here's the definition of the

> difference between mild and moderate MR

>

> Mild mental retardation

> Approximately 85% of the mentally retarded population is in the mildly

> retarded category. Their IQ score ranges from 50-75, and they can often

> acquire academic skills up to the 6th grade level. They can become fairly

> self-sufficient and in some cases live independently, with community and

> social support.

>

> Moderate mental retardation

> About 10% of the mentally retarded population is considered moderately

> retarded. Moderately retarded individuals have IQ scores ranging from 35-55.

> They can carry out work and self-care tasks with moderate supervision. They

> typically acquire communication skills in childhood and are able to live and

> function successfully within the community in a supervised environment such

> as a group home.

> http://medical-dictionary.thefreedictionary.com/Moderate+mental+retardation

>

> The way I look at it coming from the situation where there were ignorant

> professionals who wanted to shove my own son Tanner into that grouping way

> back when he was first going into kindergarten...and knowing some of the

> stories here -by the grace of God go many of our kids. If parents don't

> know how to advocate to get their children the benefit of the doubt,

> appropriate services and placement- just about any of our kids that are

> apraxic by the age of 10 could probably end up with the diagnosis of PDD

> moderate MR...that's sadly due to lack of awareness.

>

> I'm not saying I know for a fact that Tommy's daughter has apraxia -but

> clearly there's no harm in checking into it. It would not be the first time

> that we learn the (not) shocking news that Tommy's daughter is not autistic

> and has an IQ that may be around normal -has apraxia or some other

> impairment of speech and global motor planning or weakness issues -and just

> needs appropriate therapy and approaches. Ask yourself this question

> because I do...where would any of YOU be today if from the time you were

> little you were schooled and treated as if you could only reach the ability

> of moderate MR...how long till your parents gave up on you? How long till

> you give up on yourself? Robin wonders why I've never given up on

> and that is exactly the reason. Because you first have to overcome the

> damage of misdiagnosis. And until we have awareness that lack of

> communication does NOT necessarily mean lack of understanding, lack of

> receptive and cognitive ability...our children will continue to fall through

> the cracks.

>

> And what if you give a child like or Tommy's daughter a chance and

> another and another and years later nothing...to me -than you can look back

> and never have to think " if only... " My son Dakota (not Tanner) had a 6

> month delay at 2 and his neurologist Dr. Trevor DeSouza told me and my

> husband nobody would know at that point if it was permanent due to the huge

> amount of injury he sustained during delivery. And what did he tell us to

> do? " Expose Dakota to as much as possible, brain stimulation, music,

> activities, computer, colors, dance everything " ...and we did. Dakota was

> tested in 3rd grade by his school at 99th percentile -but yes with ADHD he

> is at times the absent minded professor...but we avoided medications because

> unless we really really have to -we are anti medication and went the fish

> oil route with him which worked all these years. We just started him on the

> Nutriiveda as well and based on others with ADHD -well will keep all posted.

> The point is that while others considered Dakota the " miracle child " he was

> proof to me that even when experts see little hope...the human body is a

> miracle and we don't fully understand every aspect of the brain. If for Mel

> it's not too late at 25 then clearly it's not too late at 10

>

> I know that Robin and Tommy are in contact so the beauty is we are all

> helping each other as a group in this way.

>

> =====

>

[Guest guest]

Thanks , that is helpful.

From: kiddietalk@...

Date: Sun, 17 Jan 2010 06:17:15 +0000

Subject: [ ] Re: Question for the group

Nelia to me it's the inconsistency that stood out. I mean it's one thing if a

child can't- ever. It's another if sometimes yes and sometimes no -and in

Tommy's own description of his (ten year old) daughter he says " She is now

approximating " mama " and able to repeat it most times on command " and another

classic apraxia red flag " She would try to move her mouth, but she couldn't get

any sounds out "

That together with the PDD and moderate MR diagnosis -neither diagnosis do I

care for- I mean she's either autistic or not- what does PDD mean and is her IQ

really low enough with appropriate testing by someone that is aware of

communication impairments (like say someone that works with the hearing

impaired) that she really is " moderate MR " And here's the definition of the

difference between mild and moderate MR

Mild mental retardation

Approximately 85% of the mentally retarded population is in the mildly retarded

category. Their IQ score ranges from 50-75, and they can often acquire academic

skills up to the 6th grade level. They can become fairly self-sufficient and in

some cases live independently, with community and social support.

Moderate mental retardation

About 10% of the mentally retarded population is considered moderately retarded.

Moderately retarded individuals have IQ scores ranging from 35-55. They can

carry out work and self-care tasks with moderate supervision. They typically

acquire communication skills in childhood and are able to live and function

successfully within the community in a supervised environment such as a group

home.

http://medical-dictionary.thefreedictionary.com/Moderate+mental+retardation

The way I look at it coming from the situation where there were ignorant

professionals who wanted to shove my own son Tanner into that grouping way back

when he was first going into kindergarten...and knowing some of the stories here

-by the grace of God go many of our kids. If parents don't know how to advocate

to get their children the benefit of the doubt, appropriate services and

placement- just about any of our kids that are apraxic by the age of 10 could

probably end up with the diagnosis of PDD moderate MR...that's sadly due to lack

of awareness.

I'm not saying I know for a fact that Tommy's daughter has apraxia -but clearly

there's no harm in checking into it. It would not be the first time that we

learn the (not) shocking news that Tommy's daughter is not autistic and has an

IQ that may be around normal -has apraxia or some other impairment of speech and

global motor planning or weakness issues -and just needs appropriate therapy and

approaches. Ask yourself this question because I do...where would any of YOU be

today if from the time you were little you were schooled and treated as if you

could only reach the ability of moderate MR...how long till your parents gave up

on you? How long till you give up on yourself? Robin wonders why I've never

given up on and that is exactly the reason. Because you first have to

overcome the damage of misdiagnosis. And until we have awareness that lack of

communication does NOT necessarily mean lack of understanding, lack of receptive

and cognitive ability...our children will continue to fall through the cracks.

And what if you give a child like or Tommy's daughter a chance and

another and another and years later nothing...to me -than you can look back and

never have to think " if only... " My son Dakota (not Tanner) had a 6 month delay

at 2 and his neurologist Dr. Trevor DeSouza told me and my husband nobody would

know at that point if it was permanent due to the huge amount of injury he

sustained during delivery. And what did he tell us to do? " Expose Dakota to as

much as possible, brain stimulation, music, activities, computer, colors, dance

everything " ...and we did. Dakota was tested in 3rd grade by his school at 99th

percentile -but yes with ADHD he is at times the absent minded professor...but

we avoided medications because unless we really really have to -we are anti

medication and went the fish oil route with him which worked all these years. We

just started him on the Nutriiveda as well and based on others with ADHD -well

will keep all posted. The point is that while others considered Dakota the

" miracle child " he was proof to me that even when experts see little hope...the

human body is a miracle and we don't fully understand every aspect of the brain.

If for Mel it's not too late at 25 then clearly it's not too late at 10

I know that Robin and Tommy are in contact so the beauty is we are all helping

each other as a group in this way.

=====

[Guest guest]

Hi -

I've been noticing that I NEVER get any of 's posts but I " seem " to get

everyone else's - including replies to something says. Does anyone else

have this problem?

 

Thanks

in SC