Re: apraxia w/hypotonia & EFA?

June 30, 2006

My daughter has both apraxia and hypotonia..EFAs have helped her speech

immensly but don't seem to do anything for the hypotonia.. I am in a crisis

as most everyone here has experienced one time or another..we took the MRI

results to a psycytrist and he showed me the space where the connections

between the two halves of her brain are missing she has only what looked

like one thread between. The doctor said the two halves are perfect but a

little smaller than they should be..but the connecting tissue is mostly

missing. Due to hypoxia. shortage of oxygen in fetus or at birth..we will

never know..But to make a long story short he had us put her on a low dose

of adderall and says her actual diagnosis is ADHD and what a difference the

medicine has made. More indepth questions and alterness and a willing to

learn..on the down side is the trying behaviors she had never displayed and

should have done years ago are coming thru and more challenging but I am so

happy about the good aspects that I know we can work thru the others. The

adderall helps the signals travel between the brain halfs and retreivel is

not nearly so difficult or time consuming..Now what is really the crisis

part is we have so much terror going to sleep and sleeping by herself and

even when she sleeps with us she tosses and tries to get away from bad

thoughts..She was in an orphange for over 4 years.The psyctrist has her on a

very low dose of mirtazapine ,generic of remeron. This morning she had such

a difficult time talking or getting out her normal words she usually has no

trouble with?????We were at her PROMPT therapist about 2 hours later and she

still had motor problems and speech retrieval problems from the quarter

tablet of mirtazapine the night before...I called doc and he said to

continue that it should lessen as her body gets used to it..Any one else

have any experience with this medication????

Roxanne

_____

From:

[mailto: ] On Behalf Of ojosazules76

Sent: Friday, June 30, 2006 9:43 AM

Subject: [ ] apraxia w/hypotonia & EFA?

Hi all

I am wondering about the differences in chldren that have apraxia with

and without hypotonia. It almost seems that these would be two

different types of apraxia.

Are the children that respond best to EFA supplementation also those

with low muscle tone?

Just an idea that has been noodling around my head.

I think I will post a poll for anyone to answer if you are interested.

Martha

June 30, 2006

If you study the work of Dr. ez -EFAs do appear to help with hypotonia.

The muscles when depleted of DHA have a hypotonic state.

Just two links of hers -but great work/great sites

http://www.martinezfoundation.com/Community/mwulfen.aspx

http://www.momtahan.com/mmartinez/

How old is your daughter? Is there an MD you can take her to that

is more aggressive on multisensory therapists and conservative on

medications? She's on both Adderall and mirtazapine, so who knows

how that plays with the EFAs.

As far as the " mirtazapine ,generic of remeron " I'm sure you are

sure of the warnings:

http://www.fda.gov/cder/drug/InfoSheets/HCP/mirtazapineHCP.htm

and it's not approved for use in children

http://www.rxlist.com/cgi/generic/mirtaz.htm

As a member who has been here for at least a few months -you have to

know that my son Dakota was also supposed to go onto Adderall and

the mix of the ProEFA and ProEPA has kept him medication free thus

far (he'll be going into 7th grade next year I can't believe it!!)

As far as orphanages go -my mom and Aunt Leona were raised till they

were adults in one and it was during the depression and it was horrible,

but both turned out fine with no medications either. I'm not saying

that your child doesn't need them -but like I posted about

constipation -it took Dr. hours to talk to me about Tanner and

help me to help him in a non medicine way where it would have taken

him 15 minutes to write a prescription. Medicine is not the answer

for everything -especially in very young children and especially

when it's interfering with their progress, and may have severe side

effects. Why that when the EFAs alone 'may' be all your child

needs. Have you read The Omega 3 Connection by Dr. Stoll?

When you say you took your child to a psycytrist -did you mean a

psychiatrist? Have you also taken your child to a pediatric

neurologist or developmental pediatrician? It appears your child is

dealing with both psychological as well as neurological conditions

and it may be best to have both approaches. (and again with MDs

that choose medications only after all other options are not

working. Perhaps that's the case with your child?)

BTW -my Aunt Leona who grew up in an orphanage has her PhD in

nursing and is someone I can put you in touch with who probably has

suggestions for your child. She is a warm and amazing individual -

and...a certified genius too!

=====

July 1, 2006

I, too, can attest to Pro EFAs helping my son with his hypotonia and dyspraxia.

When he was born he had almost no muscle tone---he could only move his eyes. We

used the DHA formula when he was an infant and baby, and then when he got to

about a year or so, we started him on the EFAs. His speech took off, and

because of all his therapy, and my race to try and keep up with his

developmental needs, despite his muscle tone, we have found his intelligence is

normal or above. Even though he can't speak, he knows pretty much what is going

on. As in other kids with apraxia/dyspraxia, he sometimes struggles to get his

words out, and when he loses his temper, he is really difficult to get through

to, but on the other hand, he has been learning his colors, he has started

counting, and a variety of other skills.

To me, the place where the EFAs help are with the brain functioning, which in

turn effects the gross motor skills. If a child, like my son, can't move his

body because his neurons can't make the connection, then he can't build his

muscle tone. However, as we make connections through therapy, we add new

neurons, and if we make the brain function better with the EFAs, then when his

body is strong enough, he can make the movements on his own. My son is 21/2,

and still can't walk on his own, and frankly, the tone just isn't there,

however, when you look at where he came from... It isn't that none of the

neurons are there, it is mostly his tone, and I really believe that the EFAs

helped this process tremendously. Could you imagine what would have happened,

if we hadn't started him on the EFAs?

Also, a side note---I saw the other day that someone was concerned about dyes

and soy products in the ProEFAs, and even though I don't know much about that

kind of thing, I do know that I buy my son the liquid ProEFAs, and it doesn't

have any of that stuff. In fact, it says so right on the bottle. I order all

our EFAs and supplements from nutrivene.com.

Also, Martha, my older son (10) is ADD, and so am I. The sleep issue was real

big with him as well, and one of the tricks we used was giving him a nice big

cup of warm milk. He too, was put on a sleep aid, and I just couldn't rest easy

with it, as it put him in a fog the next day, so the milk has worked out as a

great alternative. Also, I take Adderall as well, and I can tell you that at

least in me, when it wears off, I am wiped out, and sleep great! So, maybe she

will be fine with just the Adderall, and some warm milk?

Kim

" The Lord bless you and keep you. "

July 1, 2006

..my daughter is 8 years old and yes it is so hard to put her on a

medicine that causes her speech to regress...but the psychiatrist claims the

low dose of mirtazapine will repattern her sleep habits. so my husband and I

are daily wavering and evaluating the effects the medicine is having on her.

We were told approx 6 weeks would be enough to help her I really wish I

understood how.. but I don't.... I myself used to have wicked nightmares for

years and only time helped that but we will give this a try under the

doctors supervision.

I would love to hear from your Aunt Leona and no, there are no good

pediatric neurologists in ville Florida that is why we went to Miami

Childrens Hospital for the eval.and MRI/EEGs. Our peditrician is very sweet

and only has the knowedge for colds and prescriptions.

I have to stress that Adderall is doing amazing things for our daughter..She

is already on the daily dose of 6 capsules of EFA which helped with the

speech but the adderall is bringing out the seeking the desire to and

experimenting with thoughts and ideas. She is on 5 mg once a day and if we

ever find a good school we would probably give her an additional 5mg at

lunch time if needed. I am contemplating another year of homeschooling along

with 2 sessions a week of tutoring reading with a Kumon center.

I am wondering if the physical reason Dakota was recommended for Adderall

was different than that for ???? You did have a MRI done right?

Roxanne

_____

From:

[mailto: ] On Behalf Of kiddietalk

Sent: Saturday, July 01, 2006 12:36 AM

Subject: [ ] Re: apraxia w/hypotonia & EFA?

If you study the work of Dr. ez -EFAs do appear to help with

hypotonia.

The muscles when depleted of DHA have a hypotonic state.

Just two links of hers -but great work/great sites

http://www.martinez

<http://www.martinezfoundation.com/Community/mwulfen.aspx>

foundation.com/Community/mwulfen.aspx

http://www.momtahan <http://www.momtahan.com/mmartinez/> .com/mmartinez/

How old is your daughter? Is there an MD you can take her to that

is more aggressive on multisensory therapists and conservative on

medications? She's on both Adderall and mirtazapine, so who knows

how that plays with the EFAs.

As far as the " mirtazapine ,generic of remeron " I'm sure you are

sure of the warnings:

http://www.fda.

<http://www.fda.gov/cder/drug/InfoSheets/HCP/mirtazapineHCP.htm>

gov/cder/drug/InfoSheets/HCP/mirtazapineHCP.htm

and it's not approved for use in children

http://www.rxlist. <http://www.rxlist.com/cgi/generic/mirtaz.htm>

com/cgi/generic/mirtaz.htm

As a member who has been here for at least a few months -you have to

know that my son Dakota was also supposed to go onto Adderall and

the mix of the ProEFA and ProEPA has kept him medication free thus

far (he'll be going into 7th grade next year I can't believe it!!)

As far as orphanages go -my mom and Aunt Leona were raised till they

were adults in one and it was during the depression and it was horrible,

but both turned out fine with no medications either. I'm not saying

that your child doesn't need them -but like I posted about

constipation -it took Dr. hours to talk to me about Tanner and

help me to help him in a non medicine way where it would have taken

him 15 minutes to write a prescription. Medicine is not the answer

for everything -especially in very young children and especially

when it's interfering with their progress, and may have severe side

effects. Why that when the EFAs alone 'may' be all your child

needs. Have you read The Omega 3 Connection by Dr. Stoll?

When you say you took your child to a psycytrist -did you mean a

psychiatrist? Have you also taken your child to a pediatric

neurologist or developmental pediatrician? It appears your child is

dealing with both psychological as well as neurological conditions

and it may be best to have both approaches. (and again with MDs

that choose medications only after all other options are not

working. Perhaps that's the case with your child?)

BTW -my Aunt Leona who grew up in an orphanage has her PhD in

nursing and is someone I can put you in touch with who probably has

suggestions for your child. She is a warm and amazing individual -

and...a certified genius too!

=====

July 2, 2006

Hi Roxanne!

I have below some clips from archives about Dr. Nolan Altman

http://www.mch.com/clinical/radiology/mch_physicians.asp?cat_id=45

who is head of radiology at the Children's Hospital in Miami where

you took your daughter for her MRI. I had the chance to

hang out with him for a bit with Dr. Agin since we booked him as a

speaker for a conference. Dr. Altman is very aware of communication

impairments in children, and very interested in this topic of late

talking and EFAs -and offered to help with any study we go ahead

with that we want to involve SPECT scans. Also, as far as I know,

Dr. Altman is the first neuroMD to publish a paper on right brained

dominance in late talking children. I'd love for you to see if you

could get a second opinion from Dr. Altman and the neurologists he

works with/respects about your current psychologist's findings and

dismissal of apraxia in lue of ADHD.

For apraxia and hypotonia, there are quite a few here, but not all

who do go through neurological testing that includes MRIs even though

apraxia and hypotonia are also neurological impairments. In many

cases in children as of yet nothing concrete shows up to prove or

disprove apraxia in pediatrics. In growing brains there's a

difference then adult brains. SPECT scans may be better.

So...

How does the psychiatrist use the MRI to explain the hypotonia and motor

planning

impairments? I kind of think he's out of his element and

unqualified to determine that your daughter main issue is ADHD. And

what does he say about your daughter's regression on the dangerous

medication due to possible severe side effects he had her on to help

her sleep? I'd take poor sleeping over regressions in apraxia any

day! If poor sleeping was a problem I'd try the warm milk first too!

But I'd also take my apraxic/hypotonic daughter for a second opinion

if I had to drive for hours to do so just like you did the first

time rather than just seeing a psycholgist because he's the only one

to examine MRIs in ville, Florida. (I find that hard to

believe) What about Georgia? We have tons of members there and my

son's EI therapist is there and I can put you in touch with

her for recommendations of who to see.

I know that psychiatrists now are looking at MRIs to help diagnose

ADHD -a study that's still in it's infancy -so long after we got

Dakota's ADHD under control without medications by just using EFAs.

(Good thing too or Dakota or I'm sure they would have " proved " that

Dakota had to go onto Adderall)

First study

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=9\

065532 & dopt=Abstract

another

http://www.healing-arts.org/children/ADHD/mri-imaging.htm

But mainly I found information from doctors of psychiatry -when I

searched for what doctors of neurology were saying there wasn't

much -but I did find this

http://psychrights.org/Research/Digest/ADHD/DHD100percentfraud.htm

Dakota just to be clear was not sent for an MRI due to his suspected

ADHD, he had severe head and neck injuries from delivery

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

(most here probably don't understand this -but the ADHD diagnosis

was not a bad diagnosis to me anyway. My brother has it and was

also not medicated and was a top student at the Merchant Marine

Academy, youngest captain ever -and then the youngest partner at the

Maritime Law Firm he works with on Wall Street in NYC. My opinion

is that those with ADHD can do more faster than the norm when they

learn how to work with it. Granted he was a nightmare to grow up

with -but he was worked with by my parents in non medicine ways, and it's

probably how I learned how to work with my ADHD son Dakota the same

way)

I have to say I do find your daughter's reported improvements on

Adderall intriguing and wonder how that medication may be beneficial

for apraxia.

My Aunt can speak to you about her experiences in the orphanage and

tell you about the many that were in there with her went on to

become doctors, lawyers, loving parents. In fact she knows of none

who were put on medications due to being raised in one. As a

professional she won't be able to advise you in any kind of medical

way. Call me at 772 335 5135 and I can give you her number. In

Florida I LOVE Dr. Renai Jonas who is also a trip for you since she is

in Boca -but would love to put you in touch with her too to see how

she can help and who she can put you in touch with in Florida as

well. Below are two snips about Dr. Altman -and then one whole post

which kind of sums up the point...seek a second opinion when in

doubt.

~~~~~~~~~~~~~start of archives

You don't have to accept one diagnosis as fact just yet even if you

in your heart believe it to be true. You can seek a second

opinion. Also you can focus on things your child loves to do and is

good at which will make both you and him feel better. You can find

others to get together with in your area for local support (where

are you?)

Not all that have an apraxic/communication impaired child have any

hard signs that will show on an EEG or MRI -and there is no way of

knowing yet the difference between what used to be called

developmental apraxia of speech and just calling it apraxia of

speech -there is a bit of confusion right now even among the MDs -

and I'm sure down the road it will be figured out. I know in

speaking with Nolan Altman MD of Children's Hospital of Miami -the

tests they have today just keep getting better and better to show

incredible details of the brain. Dr. Altman is the MD behind the

study on right brain dominance in late talker children

http://news.bbc.co.uk/1/hi/health/3233762.stm and expressed interest

to me, Dr. Jackie Stordy, and Dr. Marilyn Agin last we were all

together. (only problem is if we do this in Florida -we need a

group of children with apraxia in Florida who have not ever been

supplemented with EFAs....and even finding a group here isn't easy

no less never supplemented with EFAs! Maybe Dr. Nolan can fly into

NJ?)

~~~~~~~~~~~~~~~~~~~

I know that Dr. Nolan Altman/Children's Hospital of Miami is at

least one who expressed interest in research in proving by using

high tech SPECT scans and others that the EFAs are crossing the

blood brain barrier. (here is a paper that may make it parent

friendly http://www.oswego.edu/~lhollen2/classes/psy303/psy-303-

extra-credit-paper.html )

Re: Diagnosis made - need support

Hi ,

Take a deep breath ...a hot bath...then put on some comfy PJs -drink

some hot chocolate and then get some sleep. It's OK to cry, it's OK

to ignore the diagnosis and laugh. No matter what your son is still

your " sweet, beautiful son " -and he is very lucky he has you for his

mommy. I can tell that you are the type that searches and will do

everything to give him the best chance possible!

You don't have to accept one diagnosis as fact just yet even if you

in your heart believe it to be true. You can seek a second

opinion. Also you can focus on things your child loves to do and is

good at which will make both you and him feel better. You can find

others to get together with in your area for local support (where

are you?)

Not all that have an apraxic/communication impaired child have any

hard signs that will show on an EEG or MRI -and there is no way of

knowing yet the difference between what used to be called

developmental apraxia of speech and just calling it apraxia of

speech -there is a bit of confusion right now even among the MDs -

and I'm sure down the road it will be figured out. I know in

speaking with Nolan Altman MD of Children's Hospital of Miami -the

tests they have today just keep getting better and better to show

incredible details of the brain. Dr. Altman is the MD behind the

study on right brain dominance in late talker children

http://news.bbc.co.uk/1/hi/health/3233762.stm and expressed interest

to me, Dr. Jackie Stordy, and Dr. Marilyn Agin last we were all

together. (only problem is if we do this in Florida -we need a

group of children with apraxia in Florida who have not ever been

supplemented with EFAs....and even finding a group here isn't easy

no less never supplemented with EFAs! Maybe Dr. Nolan can fly into

NJ?)

There is much hope that we will have answers on more ways to help

our children going ahead...and again I just know that EFAs will be a

large part of the answer.

For now -we do post here many success stories for children who

receive early and intensive appropriate speech and multisensory

therapies (and EFAs)

So after all this about EFAs and speech -funny enough I did a quick

search on " immature EEG " and found: 'No differences in EEG scores

or Fagan scores were found, but neonates with mature EEG (N = 70)

had a higher concentration of DHA in umbilical plasma phospholipids

than neonates with immature EEG (N = 51) on the second day of life. "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=1\

1694666 & dopt=Abstract

The conclusion " This study shows neither harmful nor beneficial

effects of maternal supplementation of long-chain n-3 PUFAs

regarding pregnancy outcome, cognitive development, or growth, as

compared with supplementation with n-6 fatty acids. However, it

confirms that DHA concentration may be related to gestational length

and cerebral maturation of the newborn. "

(again when will they learn they can do a study and actually mix the

two together -then get back to us when you get those findings which

we already know what they will be!)

And for the MRI. One of the parents of a patient of pediatric

neurologist's Xue

Ming

MD PhD out of UMDNJ posted here about her daughter's delayed myelin

which showed on an MRI which improved remarkably once on ProEFA.

What was

interesting is that Dr. Ming said

that even those unlike her daughter who have instead subtle delayed

myelin that

doesn't show up on the

MRI -they are finding at UMDNJ that in children with autism and

apraxia most have this subtle delayed myelin showing up in the lab.

Dr. Ming is

one of the MDs I spoke to when I was asked to do a presentation for

the neurodevelopemental department at UMDNJ after I posted my theory

(that ended up being right) about myelin and EFAs here.

Even in cases where the diagnosis is severe -there is always great

hope. I can

tell you that for a fact.

=====

July 21, 2006

,

I attempted to contacted Dr Nolan Altman via email and unfortuately got no

response as I would have loved to have him look over 's MRI so I

made my decision based on what I saw happening to my daughter. I still

haven't told the psychiatrist as we have an appt Aug 2nd.

....But I am really sending you this info to update everyone what resulted

with my daughters sleep issues. After one week of seeing her struggle much

more with her speech than normal because of the Remeron the final straw was

when she woke up crying ..My husband came up with the idea of letting her

sleep on the couch while we sit in the same room watching TV. It is amazing

but the apprehension was based on being left alone in her room and now she

is not nervous when she wakes up in the middle of the night or when she goes

to the bathroom by herself and than comes into our bed. it may not be the

ideal answer but it is keeping her at ease and we are not tied to her

bedroom til she falls asleep or wakes up every couple hours to check if we

are in her room.

We also decided to take her off the adderall after weighing the negative

effects. It was making her extremely argumentive. Versus the good part

which was when the Adderall was wearing off she seemed to be more alert and

inquisitive???after the 3rd week of Adderall I took her off and upped her

Omegas to 4 capsules of 3-6-9 twice a day and 1 EPA twice a day.. I have not

noticed anything negative or different after making these changes. Our sweet

and smart little girl is back..

's Mom

Hi Roxanne!

I have below some clips from archives about Dr. Nolan Altman

http://www.mch.

<http://www.mch.com/clinical/radiology/mch_physicians.asp?cat_id=45>

com/clinical/radiology/mch_physicians.asp?cat_id=45