and Hour Talk Show "Not
Just A Late Talker" (being rerun Friday,
January 25, and if you are not in New Jersey, Pennsylvania, Maryland,
or Delaware, you can watch this show online!! See below!)
"Look Who's Talking Now" An
article from EngleMed Health and Medicine News Service
Helping Hands - An advocate for a little-known disorder"
By Michelle Howe, Star-Ledger Staff
Under the Umbrella Fall/Winter 1999,
Children's Specialized Hospital "Unlocking
the Words: Helping children with apraxia"
From The LCP Solution
by B. Jacqueline Stordy "DYSPRAXIA/APRAXIA: THE "LELLOW" BREAKTHROUGH"
on Late Talker vs Apraxia
A Late Talker" TV Show
"Not Just A Late Talker" A
half and hour talk show about verbal apraxia
and professionals from CHERAB aired twice now
on CN8 on
the show, "Real
We know that only the people
that receive the CN8 TV station were able to
watch the Not Just A Late Talker show on TV
even though CN8 has now aired it twice. I
spoke to the producer about what happened and
as you all probably know, in the media
world crashing the server for a second time
is not a bad thing. It sends a powerful message
to them and the world that there is extremely
strong interest in this area, and that there
are more than us than they thought.
most people looked at apraxia as an unknown,
and possibly rare speech
disorder. That may be because most just stuck
to the label "apraxia" which is
limiting since that label is controversial,
yet the reality is that children with the same
"late talker" symptoms are on the
rise. So no matter what you or your
doctor or your school or your
speech therapist or your mother in law
calls this speech disorder/impairment, there
are more "late
talkers" today than there were years
ago. And there is something that needs to be
it to help all of our children, and all of
A Late Talker" A
half and hour talk show about verbal apraxia
and professionals from CHERAB on the CN8 show "Real
Life" on 1/14 2001 and
1/25/2002 You can view this online at
will need Real Player to view it).
You can get a
trial of Real Player (to find the "free" download of Real
Player look for the small type on the gray bar
on this page) test it out.
This show, titled "Not Just
a Late Talker" (You know how everyone
"Oh he's just a late talker!") is
about apraxia from the viewpoint of parents
professionals. Appearing on the show
are: one of the advisors for CHERAB, Dr.
Judy Flax , PhD in
charge of research for the Center for
Molecular and Behavioral Neuroscience at
Rutgers University, as well as Cheryl
Bennett Johnson SLS MA /Educational
Consultant who is featured in two
commercials as the NJ Teacher
6:00 PM half- hour talk show on
Late Talker vs. Apraxia aired all over New
Jersey, Maryland, Pennsylvania and
Delaware to over 4 million homes.
you want a video copy of the half and hour
talk show on
Late Talker vs. Apraxia, or you want to know
about future re runs - call CN8 at
732-602-7492 ext. 2570 You will need to
ask for show number 66 - The show is called
"Real Life" titled "Not just a
late talker" and the original air date
is January 14th, 2002.
heard that this show "zips
by" from the producer who watched it
before it aired and she was right. She told me that when
you have a great show - the time moves
quickly-and our show "zipped".
(When a show goes slow -it's not a good
show-but I guess that's obvious) Glad to
hear it zipped by because that's how it felt
to us during the taping! Thanks Lisa,
Mary, Autumn and everyone from CN8 for helping
to give the children a smile and a voice!
they didn't get time to really talk much
-listen to some of the children from the
show (click on their picture)
If you want to see some photos of
Halley, Tanner and Dakota's trip to NY after the taping click
Talking Now: Fish oil capsules help children with speech disorders
find their voices
A simple fish oil
supplement may be the key to dramatically unlock the voices of children
with speech and language disorders.
That’s the conclusion
of a group of scientists who reviewed a study of nineteen youngsters
suffering from various speech problems. The children, ranging in age
from two years to eight years, were given a fish oil supplement
containing a mixture of omega-3 and omega-6 essential fatty acids (EFAs).
Speech-language pathologists who monitored the children reported
significant improvements within just a few weeks. The improvements were
noted not only in the children’s ability to talk, but also in their
behavior, ability to focus, and in maintaining eye contact.
Now the scientists,
brought together by the CHERAB Foundation, a major nonprofit group for
children with speech disorders, are calling for a large-scale clinical
trial to validate these initial findings.
were dramatic,” says developmental pediatrician Marilyn C. Agin,
medical director of the New Jersey-based foundation, who also reported
similar results in ten anecdotal cases. “They strongly suggest that
EFA supplementation combined with speech and occupational therapy could
become the treatment of choice in multifaceted communication
Until now children with
severe speech disorders such as apraxia, a neurologically-based
condition, have required years of intensive one-on-one therapy—often
with painfully slow progress. “But now, with EFA supplementation, the
future for these children may be much brighter—and sooner rather than
later,” says Lori L. Roth, M.S., CCC/SLP, a speech pathologist with
the CHERAB foundation.
The amazing potential of
EFA supplementation came to light when the nonprofit group’s
president, Lisa Geng, used it with her three-year-old son, Tanner. After
just three weeks his vocabulary exploded. “It was the breakthrough we
had been praying for. It was incredible,” says Lisa.
Why does this
supplementation work? The experts believe that the speech disorders are
the result of a breakdown in communication between the brain and the
muscles in the mouth, tongue and jaw that have to work together to
produce speech. Essential fatty acids, especially the omega-3 DHA and
the omega-6 fatty ARA, are highly necessary for brain development. Most
children obtain them—during the most critical times of brain
development—directly from their mothers while they are still in the
womb and subsequently while being breast-fed. Any deficiency can result
in permanent neurodevelopmental deficits in the growing infant.
fatty acid supplementation in neurodevelopmental speech disorders could
correct a specific deficit in the speech center of the central nervous
system,” says Robert Katz, Ph.D., CHERAB’s director of EFA research.
The panel of experts who reviewed
the study included scientists from the NIH, Johns Hopkins University,
Kennedy Krieger Institute, University of Kansas, and Oxford University,
England. They join a growing group of researchers who are heralding the
benefits of essential fatty acid supplementation for a wide range of
brain-related problems including depression, bipolar disorder, schizophrenia,
attention deficit hyperactivity disorder, dyslexia, and even Alzheimer’s
disease and autism.
For more information contact:
COMMUNICATION HELP, EDUCATION, RESEARCH,
Web site http://www.cherab.org
advocate for a little-known disorder
By Michelle Howe
At Tanner Geng’s second birthday party, his parents, Lisa and Glenn, noticed there was something wrong with their son.
“He wasn’t able to blow out the candles on his birthday cake and he couldn’t purse his lips to blow. It was a real wake-up call for us,” Lisa Geng said.
In addition, Tanner had a speech problem. At first, doctors thought he was “just a late talker,” his mother said. But his difficulties were more serious.
Tanner, now 4, was diagnosed with apraxia, a neurologically based, severe speech disorder. Apraxic children require daily, intensive therapy.”
“I’ve been told he will be able to talk- maybe not like you and I, but with continued therapy, he’ll be able to make himself understood,” Geng said.
Following the diagnosis, Geng sought a support group. But at the time there were only seven such groups in the world, and none of them was in New Jersey.
“Lauren Zimet, my son’s former therapist at Children’s Specialized Hospital suggested I start my own, so I did,” said
Geng, a Warren Township resident.
Geng and two other mothers ... – founded the Children’s Apraxia Network. The group meets on the first Monday of every month at 7:00
p.m. (except for holidays) at Children’s Specialized Hospital, 150 New Providence Road in Mountainside. The organization is not affiliated with the hospital, Geng noted.
“Parents and professionals who want to help us are coming from throughout New Jersey, New York, Pennsylvania and Connecticut. In addition to being able to share
information amongst ourselves, we have guest speakers from the medical community who provide us with the latest information,” Geng said.
Lori Roth, a speech pathologist with a private practice in Cedar Knolls, said the cause of apraxia is unknown.
“Children’s verbal apraxia is a motor sequency problem where there is a lack of connection in the motor section of the brain that inhibits speech. There is a wide range of
severity in those with the disorder,” Roth said.
“With apraxia, a child has difficulty coordinating the oral-motor movements necessary to produce and combine speech sounds to form syllables, words, phrases or
sentences,” said Michelle Ortega, a therapist who has worked with Tanner for the past six months.
“Looking back there were signs that he had problems,” Lisa Geng said, “But compared to our oldest son who had severe respiratory and developmental problems due to a
traumatic birth, Tanner seemed so advanced.”
At 11 months of age, Tanner developed two cases of roseola with very high fevers, “Before the fevers, he could say “da” for dad. He couldn’t afterwards. Tanner could
still say “ma” but would only say “mmm” for everything else,” his mother said.
Tanner now attends (an out of district preschool) and receives occupational therapy at the Handicapped Treatment Center in Somerset.
In addition to the professional therapy, the Gengs work with him at home as much as they can.
“Tanner is 4 now and his brother is almost 6. It’s important for us to be able to spend as much time helping them as possible, so we run an Internet shopping service
(http://www.shopinservice.com) out of our home,” Geng said.
“The bottom line is, you have to become an advocate for your child, especially if he or she has a medical problem that needs extra attention.”
Under the Umbrella Fall/Winter 1999
Children's Specialized Hospital
"Unlocking the Words: Helping children
two years of age, Tanner Geng of Warren was unable to blow out the
candles on his birthday cake. "He couldn't purse his lips to
blow. His face was very round and he was not expressive." said
his mother Lisa.
For Lisa Geng and her husband, Glenn, it was a
major tip off that something was definitely wrong with their second
child who was born a very healthy baby.
The Gengs recalled that at
eleven months of age, Tanner developed two cases of roseola back to back
with very high fevers. After the fevers, he lost the ability to
say "da" for dad, as he had done before. He could still
say "ma" but, could only say "mmm" for everything
"Looking back there were signs before he turned two that he
had problems. But compared to our older son Dakota who had severe respiratory
and developmental problems due to a traumatic birth, Tanner seemed so
advanced." said Geng. "but, not being able to blow out the
candles was a real wake up call for us."
The Gengs sought a
diagnosis for their son's speech problems and were finally given a
diagnosis of apraxia, a disorder which results in difficulty
coordinating the oral-motor movements necessary to produce and combine
speech sounds to form syllables, words, phrases, and sentences.
Tanner's case, he had verbal and oral apraxia meaning that he was unable
to produce words an did not know how to move his mouth, cheeks, and
tongue to make sounds. "He was not even aware of his own
tongue." said Geng. "If you put peanut butter on his
upper lip, he didn't know how to lift his tongue to lick off the peanut
"With apraxia, the child's brain knows what it
wants the body to say or do, but it can't get the message out of the
mouth or get the facial muscles to form the words." explained
Lauren Zimet CCC/SLP, a Children's Specialized Hospital speech language
pathologist who works with children with apraxia. "Motor
planning is the first step in language skills. Children with
apraxia have a shortage of speech sounds or phonemes."
children with verbal apraxia may only be able to utter a few sounds,
whereas, others may be able to say a few words but have difficulty
stringing them together to make a sentence. Those with oral
apraxia do not know how to move their facial and tongue muscles to make
sounds. For some, the apraxia may also affect their fine
motor skills, making everyday tasks such as dressing and writing
Apraxia is a mysterious disorder in which
a child may be able to say a word one day, but not the next. Parents of children
apraxia often report that it seems as if their children "lose" words
According to his mother, Tanner experiences
episodes in which he cannot perform a task that he was able to do the
day before, such as putting on his socks and shoes. He is unable
to recall the necessary movements and sequencing.
For children with
apraxia it can be a very frustrating condition for though they cannot
speak, they often have average to above average intelligence. Many
can even read and write perfectly but cannot speak.
area of frustration is the lack of information on the cause of apraxia,
which is thought to be neurologically based and may be present from
birth or develop later on. While the Gengs believe their son's
apraxia is due to his bouts with roseola and high fevers, there is no
clear reason why some children have the disorder.
What is known is
that speech therapy, and occupational therapy in the case of fine motor
difficulties, can help and the earlier the better. According to
Zimet, children with apraxia benefit from intensive therapy for motor
planning and parent involvement is key.
"A child will not make
progress is they only receive reinforcement during therapy
sessions." explained Zimet. "The child's parents and
other caregivers need to learn the therapy techniques and reinforce them
at all times."
Since each child responds to the various therapies
in differing degrees, Zimet stressed that the therapy should be
individualized for each child.
"There is no one therapy method
that works best. I suggest an eclectic approach, taking the best
from each method and individualizing it for each child and family.
Explore different therapies or techniques, especially if the child seems
to be plateauing. Again, daily reinforcement of whatever therapy technique
is being used is important. Sounds can come and go, but with continual
reinforcement they are more likely to stay" stressed Zimet.
children with apraxia are able to communicate effectively verbally. they
may require an alternative form of communication, such as sign language.
is a viable means of communication," explained Zimet.
"There are parents who may worry that if they teach their child
sign language, the child may not want to then develop their
speech. But, the research hasn't shown that."
books also can be helpful. Zimet suggests that the book, a type of
picture book, be made with the child and be a fun experience. It
should be personalized and include categories such as food, toys,
routines, and dressing.
According to Zimet, use of signing and
communication books helps alleviate frustration for the child and the
parents, reducing behavioral issues and fostering self-esteem.
type of vocalization along with a sign or pointing to a picture is
great." said Zimet. "The child may just be able to day
"da" for dog at first but through repetition the therapist and
family can help the child form the word. In the meantime, the
child is able to communicate with others."
Again, Zimet stresses
the importance of repetition and family involvement, something that
Barbara Sullivan of Westfield has proven to show results.
Tanner, Barbara's son, Christopher, who recently turned three, has
apraxia. She learned through Zimet who she describes as
phenomenal, the importance of facial stimulation.
"I was determined
to help Chris>" explained Barbara. "One day after Lauren
explained facial stimulation, I sat with him in front of the mirror and
showed him how to form words." By the end of the first day he could
say what every mother years to hear - "mommy"
While Chris is
making progress. Sullivan reports that is was not easy to get the
process rolling. "When Chris was 15 months old I felt that
there was something wrong with his speech but his pediatrician wouldn't
entertain the idea." she said. "At eighteen months his
speech wasn't any better. He could only say "dat" and would
point to everything. At nineteen to twenty months he could say
"titi" for the baby sitter, "baaa" for Mom, and
"daaa" for Dad. The only other word he had in his
vocabulary was "phat"
The Sullivan's pushed for an
evaluation and soon learned that their son had apraxia.
Once a proper
diagnosis had been made, it is important to find a therapist who can
develop a rapport with your child. According to Zimet, many
children with apraxia feel nervous and anxious attempting to speak in
front of the others because of the difficulties they have. Therapists
need to make the sessions positive and fun to relieve and lay the foundation
for a successful therapy session.
The Sullivan's add
that it is important to find someone who is willing to take the time
to look at the whole child. Child, had difficulty sitting still for
therapy sessions and paying attention. His other CSH speech therapy,
Mara Friedman, suggested that they investigate what was causing the
"It turns out he is allergic to red dye.
Once we cut out foods that contained the dye, he was significantly less
hyperactive." reported his mom.
Now that Chris is less
active. Friedman is able to work on developing Chris' facial
muscles by having him blow horns and bubbles.
The Sullivan's work with
Chris everyday at home, modeling how to say things and reinforcing what
he has learned. They even have goals and homework each week from
of worrying there are things we can do to help him now." exclaimed
When they do have worries they have other families they can
share them with thanks to the initiative of the Gengs.
Tanner was first diagnosed with apraxia, I looked for a parent support
group but soon found that there are only seven groups in the entire
world for apraxia. None of them were in New Jersey." said
Lisa (The closest one was eight hours away) "Lauren suggested that
I start one here. So I did."
Twenty-five people attended
the first meeting of the Children's Apraxia Network this past
August. Children's Apraxia Network, which was founded by Geng,
soon hit a membership of 100 people.
"The response has been overwhelming.
People from Pennsylvania, Connecticut, New York, and Southern New
Jersey, have made the trip so that they can meet other parents and
professionals and learn more. There is so little out there that we
have now become a resource for parents and professionals alike." said
Professionals, such as Zimet, have addressed the group to
help parents sort through this mysterious disorder.
"It can be a
roller coaster for parents and their children." said Zimet.
"They need to be reminded of how far their child has come and to
build on past successes."
She suggests that parents keep a
journal noting new sounds and words their child has mastered. They
also should note challenges, so that thy next time their child
encounters a difficult period they can look back and see previous
achievements and they progress they have made.
"The key is to
identify the problem as early as possible, find a therapist and therapy
techniques that work with your child and keep up the reinforcement,"stressed
Zimet. "many of these children can become effective
communicators over time."...
The LCP Solution book
THE "LELLOW" BREAKTHROUGH
Tanner, standing in the bathroom of his family's New Jersey home picked
up a pink comb, pointed to a yellow stripe that ran through it, and
said, "Lellow." It was the first 'real' word he had ever
spoken and it came after just three weeks of supplementation. "I
almost fell over," says his delighted mother, Lisa Geng. "It
was the breakthrough we had been waiting for. It was incredible." Within
a few days, Tanner's vocabulary increased to seven words. Within five
weeks, he had mastered twenty-two words.
Tanner, during his
first year of life, had seemed like a normal, healthy baby and by the
age of eleven months was babbling normally and saying "ma" and
"da." Then, after a bout of very high fever, he stopped
talking. Photographs show an unsmiling two-year-old. "No matter how
hard the photographers tried he just would not smile. He was
lethargic," says Lisa. Typically, everyone kept telling her that he
was just a late talker, but Lisa and her family became increasingly
concerned and pushed for a hearing and speech evaluation. Four months of
speech therapy led to an official diagnosis of severe apraxia of speech.
Tanner was two years, eight months old. During the four months of speech
therapy he had learned to say basic sounds such as "sh,"
"ch," "t," and "s" with some prompting. He
had learned how to blow bubbles and could move his mouth more than
before. But he found it impossible to take the "ch" sound and
put it together with the "oo" sound to make "choo."
As soon as they
heard that Tanner was apraxic, Lisa and husband, Glenn, began to search
for information. "We were shocked to find out how little support
and information there was at the local level, and this was in a fairly
affluent area close to New York," says Lisa. In desperation, the
couple turned to the Internet and discovered the apraxia-kids listserv.
After reading other parents' positive comments about LCP supplementation
and consulting Lisa's aunt, a retired nursing teacher at Long Island
University, they decided to give it a try.
Three weeks later
they were thrilled with the results of that decision. "I know that
it can take as long as three months of supplementation for any benefits
to be noticed but we saw results with Tanner in three weeks. I'm not
exaggerating," says Lisa. Tanner's Early Intervention therapist
told them that he had become "a different child" and the
therapist was so impressed that she began recommending LCP
supplementation to other patients.
Lisa and Glenn,
however, took him off supplementation for a while when he was going
through testing for the disabled preschool program in their home town. "His improvement had been so dramatic we were actually afraid that
he would test too well to be accepted," says Lisa. The result was
calamitous. "It was the saddest thing. We will never do that to
him again. The poor little thing was no longer able to say as much, and
just didn't seem to learn. He wasn't able to 'parrot' us like he had
when taking the supplements. And for the first time he was frustrated
to the point of tears."
supplementation, Tanner showed steady improvement and broadened his
vocabulary. Adds Lisa, "He's able to say many things now. Just last
night he looked at his daddy, and said, 'Love you.' What a wonderful
moment that was." Lisa says that the only negative is trying to
get Tanner to actually take the supplements because of the fishy taste.
does her best to disguise it by mixing the contents of the capsules with
cereal and other foods.
Lisa and Glenn
became so interested in helping Tanner and other kids like him that they
started a non-profit organization, Children's Apraxia Network, based
at the Children's Specialized Hospital in Mountainside, New Jersey.
the group's main goals is to raise funds to enable parents of "late-talking children" to have consultations with speech
language pathologists when their kids are at an earlier age. Says Lisa,
"What parents hear is, 'Wait until he's three and then we'll run
some tests.' That's too late when a child has a real problem and should
be getting treatment earlier."
Background on CHERAB
CHERAB Foundation formed in January 2001 was incorporated as a nonprofit to ensure the spread of education
and training programs with a purpose to improve the health and welfare
of all children with speech delays and disorders with a focus on apraxia
or other severe neurologically based speech conditions. The cornerstone
of our efforts is to bring professionals from different disciplines
together to provide the most comprehensive evaluations and treatments
for these children.
CHERAB stands for all we embrace, “Communication
Help, Education, Research, Apraxia Base.” Through the foundation
we raise public awareness and disseminate basic information regarding
early childhood speech conditions throughout the professional and
parental communities. The Foundation focuses on providing and funding
research, education, screening and information for speech delays vs.
CHERAB Foundation Past and Present
Due to the dire lack of information, focus
on, and treatment, within the medical community towards complex speech
and language disorders, Lisa Geng - herself a parent looking for help,
began an small support group that grew by leaps and bounds since it’s
inception. Having reached global exposure after being featured in the
media greatly assisted in bringing experts from all over the world as
guest speakers for the group meetings. Once realizing the enormity of
this problem worldwide, Lisa started an informational website and a
grouplist, which together serve a vital role in helping both the parents
and professionals who care for all types of late talking children.
Based on the ever-growing demand the
CHERAB Foundation was formed. Dr. Marilyn Agin – a developmental
pediatrician and a Medical Director for Early Intervention in NYC is the
Medical Director. The Foundation continues to bring medical, speech and
educational professionals together with parents to help each other help
the children “find a voice and a smile.”
Foundation Scientific Programs
following was from 'the First Apraxia Conference' July 23-24, 2001,Headquarters
Plaza Hotel, Morristown, New Jersey USA
was also presented at the Research Workshop - September 20-21 and
on September 22, 2001 'Fatty Acids in Neurodevelopmental Disorders' St
Anne’s College, Oxford, UK
FOUNDATION SCIENTIFIC PROGRAMS
APRAXIA/DYSPRAXIA and the THERAPEUTIC ROLE of
ESSENTIAL FATTY ACIDS:
Perspectives of Speech Pathologists:
Perspective of a Developmental Pediatrician:
Time Line of Therapeutic Outcomes in
FOUNDATION PROFESSIONAL STAFF
and Scientific Panel Members of the First
Conference on Verbal Apraxia/Dyspraxia
FOUNDATION SCIENTIFIC PROGRAMS
conference for therapy of verbal apraxia/dyspraxia entitled: "Verbal
Apraxia/Dyspraxia and Essential Fatty Acid (EFA) Supplementation:
Potential Therapeutic Intervention," 23-24 July, 2001,
Headquarters Plaza Hotel, Morristown, New Jersey,
U.S.A., was organized under the auspices of the CHERAB
Foundation and the Consortium for Fatty Acids, Omega-3
Research Institute, Inc. The research findings
described below were presented by CHERAB Foundation
professional staff to a panel of participating experts
for their review. The panel recommended the initiation
of clinical trials to validate the potential
therapeutic effects of EFA supplementation
apraxia and autism. The data was also presented as
three posters at the Conference on "Fatty Acids in
Neurodevelopmental Disorders", September 20-21, 2001
Oxford, United Kingdom.
VERBAL APRAXIA/DYSPRAXIA and the THERAPEUTIC
ESSENTIAL FATTY ACIDS:
Marilyn C. Agin, M.D., New York City Early
Intervention, New York, and CHERAB Foundation,
Gillette, New Jersey
Robert Katz, Ph.D., Consortium for Fatty Acids,
Omega-3 Research Institute, Inc., Bethesda, Maryland
and CHERAB Foundation, Gillette, New Jersey
Lori L. Roth, CCC SLP, CHERAB Foundation, Gillette,
Verbal Apraxia (VA) affects the programming of the
articulators and rapid sequences of muscle movements
for speech sounds. These children frequently display
neurologic “soft signs” including hypotonia, sensory
integration disorder, and motor planning difficulties.
The speech assessment reveals a limited repertoire of
consonant sounds, inconsistency of speech errors, and
sound/syllable omissions. These children usually have
near-normal receptive language and intelligence. It is
a difficult speech disorder to treat with variable
outcomes. Many children never develop intelligible,
conversational speech. Dramatic leaps in speech
progress have been noted with essential fatty acid
(EFA) supplementation by parents and professionals.
The most often used EFA supplement is a 1000 mg
capsule containing a mixture of DHA (docosahexaenoic
acid, 99 mg.), EPA (eicosapentaenoic acid, 148 mg.),
GLA (gamma-linolenic acid, 40 mg) available under the
name of ProEFA or Complete Omega and manufactured by
Nordic Naturals, California.
The Perspectives of Speech Pathologists:
Our objective was to assess potential therapeutic
effects of essential fatty acid (EFA) supplementation
of children with VA by surveying speech pathologists
that provide speech therapy to the supplemented
children. A total of nineteen speech pathologists
(eighteen of them independent), returned the
questionnaires that constituted the professional
anecdotal case reports included in this analysis. The
patient population consisted of 16 males (including
one pair of identical twins) and 3 females, mostly
between 27-97 months of age. Seventeen of the 19
patients were supplemented with ProEFA (13 with one
1000 mg softgel capsule/day and four with two).
Outcome variables measured included the following:
affect, muscle tone, muscle control, behavior, social
skills, attention, eye contact, and academic ability.
Post-supplementation, the children were rated
according to the following
scale: 1=not sure, 2=no change, 3=subtle change,
4=moderate 5=significant, 6=outstanding change.
The analysis of data led to the following conclusions:
a) EFA supplementation resulted in a marked shift in
verbal statement ability from the nonverbal end toward
the singing end of a hierarchical sequence, i.e., from
decreases in nonverbal, gesturing, grunting, single
sounds, to increases in single words, multiple words,
sentences and singing. b) Seventeen of the 19 subjects
(89%,) showed varied degrees of improvements in the
Speech outcome variable. Of these improvements 9 (53%)
were subtle, 5 (29%) were moderate and 3 (18%) were
significant. Only two patients (11% of 19) showed no
The nineteen reports were divided in two subgroups
according to the effect of supplementation on the
speech/communication outcome variable. A statistical
test indicated that improvements in speech of patients
in Subgroup 2 (containing all eight cases representing
moderate and better than moderate improvements scores
of 4 and 5 respectively), are significantly higher
than the improvements in speech of patients in
Subgroup 1 (containing the eleven cases representing
the no-change and subtle improvement scores of 2 and 3
respectively). Three patients in Subgroup 2 were
diagnosed with verbal apraxia (one mild, one moderate
and one severe case). In addition, the mild case also
had feeding-swallowing disorder. A fourth patient was
diagnosed with mild VA and oro-motor hypotonia,
additional three patients had severe VA with hypotonia
and sensory integration disorder (SID). One of these
also had autism and another was suspected to have
ADHD. The eighths patient had mild VA with hypotonia
and SID. The patient with autism showed moderate
improvement in speech and better than moderate
improvements in behavior and attention. Descriptive
statistics (mean and standard deviation) of all
variables surveyed in the population of Subgroup 2
indicate (in order of decreasing means) that
improvements in Speech (4.4(0.5) > Attention (4.0(1.5)
= Behavior (4.0(1.9) > Affect (3.4(0.6) = Social
Skills (3.4 (1.4) = Eye Contact (3.4(1.7) > Muscle
Tone (3.1(1.6) > Muscle Control/Coordination
The Perspective of a Developmental
Anecdotal case reports provided by the CHERAB
Foundation's Developmental Pediatrician were also
analyzed. Ten children were supplemented: Nine had the
diagnosis of VA; one had a dual diagnosis of VA and
pervasive developmental disorder (PDD-NOS), and one
was autistic with an expressive language disorder.
Eight of the children were receiving 1 capsule/day of
ProEFA and 2 were receiving 2 capsules/day. The
majority of the children had been supplemented for at
least three months. All of the children were receiving
speech therapy at least three times a week. Age range
was 32 months to 96 months old. Descriptive statistics
were used to analyze the data. The same outcome
variables and scoring scales have been used as above.
The variables that showed the most improvement were
speech and attention,
with means of 4.7 (SD=1.3) and 4.1 (SD=1.2)
respectively. According to the scale, this correlated
with moderate to significant improvement. To a lesser
degree, there was
improvement in affect and eye contact with means of
3.8 for both. There were no significant changes in the
other variables. The two children on the autistic
spectrum showed significant improvements in speech and
eye contact, with means of 5.0 and 5.5 respectively.
A Time Line of Therapeutic Outcomes in
Speech therapy intervention has been an integral part
of a program designed to treat children diagnosed with
VA. Speech therapy approaches from oral motor
patterning to “traditional” articulation drills yield
fair success over lengthy periods of time. The
potential therapeutic effect of EFA supplementation
initiated by parents was followed in four children
with VA by the CHERAB Foundation's speech pathologist.
Outcomes of the study are reported here. An initial
evaluation consisting of a receptive and expressive
language test, oral motor coordination examination and
verbal/sound production test (Receptive One Word
Vocabulary Test, Expressive One Word Vocabulary Test,
Preschool Oral Motor Functioning Scale, Kaufman Speech
Praxis Test) was performed on each subject prior to
EFA supplementation. In general, the children
demonstrated age-appropriate receptive language
skills, extreme difficulty coordinating articulator
movements for sound production, and a significant
delay in expressive language skills. The children were
given a daily dose of one 1000mg capsule of ProEFA.
Two weeks into supplementation, each child began
demonstrating improved attention to task, sustained
eye contact with the therapist and calmer general
participatory behavior. Beyond this time, each child
demonstrated an improvement in the level of verbal
statement specific to the baseline performance
obtained in testing. One of the children began
supplementation essentially non-verbal and progressed
to two-word utterance production within 2 months.
Outcome measures included standardized scores from
general tests of language and measures taken from
language-sample analyses as well as an objective scale
grading speech production from non-verbal to singing.
There were modest to significant changes in
standardized measures of language after 2-3 months of
EFA supplementation in all four cases using an 80%
criterion confidence interval. These were
substantiated by the clinically significant changes in
language sample measures. Such improvement
characteristically occurs after 9 to 12 months of
intensive speech therapy intervention.
The above preliminary data provide evidence that:
EFA supplementation has great potential in
accelerating speech gains in children with verbal
apraxia/dyspraxia. Thus, EFA supplementation in
conjunction with speech therapy improved pre-speech
behaviors (eye-contact, attention to task), speech and
language production (single sound, word and sentence
production), imitation skill accuracy and decreased
inconsistent imitation errors, distractibility and
Improvements are greater than would be expected from
speech therapy alone
Verbal apraxia appears to be present in a percentage
of children on the autistic spectrum and an
association could be possible between VA and other
disorders/syndromes, such as: hypotonia, sensory
integration disorder, dysarthria, attention deficit
hyperactivity disorder, Kabuki Syndrome and cerebral
palsy. Further exploration of the basic and clinical
aspects of these phenomena appears warranted.
A panel of scientific experts at the July 23-24
Conference discussed the evidence presented above and
unanimously agreed that the existing scientific
evidence justifies planning and implementing a
comprehensive clinical trial to convincingly validate
this new, potential therapeutic intervention. The
panel discussed various clinical research alternatives
and recommended that a randomized, placebo-controlled
multi-center clinical trial of EFA and placebo
supplementation to be undertaken as soon as possible.
For example, all diagnosed verbal apraxic children,
including those with hypotonia and sensory integration
disorder, who have not been supplemented with EFAs,
would be eligible for randomization. The panel
suggested that all randomized children would be
supplemented with EFA or placebo in addition to
appropriate speech therapy. This took into
consideration the potential cooperative or possibly
synergistic effect of the combined therapies in the
treatment group. The length of the trial is proposed
to be 3 months. Improvement in verbal communication
skills, or the lack thereof, using an assessment
protocol as described above, would be the major
therapeutic outcome measured, and plasma, as well as
erythrocyte membrane EFA levels would be monitored
periodically. The two groups would consist of about
20-30 age-matched subjects. ProEFA would be the
therapeutic supplement used in the trial based on
preliminary successes attained.
CHERAB FOUNDATION PROFESSIONAL STAFF
Marilyn C. Agin, M.D., Medical Director, CHERAB
Foundation, graduated from New Jersey Medical School
in 1986, followed by a combined residency in
Pediatrics and Physical Medicine and Rehabilitation at
New York University Medical Center. She is board
certified in both fields. Prior to medical school, Dr.
Agin received her master’s degree in Communication
Disorders and was a practicing speech pathologist.
Currently, Dr. Agin is the Medical Director of the New
York City Early Intervention Program and does private
neurodevelopmental evaluations primarily for children
with communication disorders, learning disabilities,
and autism,. She is a member of the New York City
chapter of the Committee on Children with Disabilities
of the American Academy of Pediatrics (AAP), and has
been appointed to the Executive Council of the New
York City chapter of the AAP.
Robert Katz, Ph.D., Director for EFA Research, CHERAB
Foundation, received his degree in Organic/Medicinal
Chemistry from the Hebrew University, Jerusalem in
1972. During his postdoctoral fellowship (1972-1973)
at the National Institutes of Health
(NIH), Bethesda, Maryland he worked in
computer-assisted drug design of analgesics and
molecular pharmacology of neurotransmitters. From 1978
to 1993, Dr. Katz was Director of Metabolic Diseases
National Institute of Diabetes, and Digestive and
Kidney Diseases, NIH where he administered and managed
nation-wide research programs in membrane structure
and function, membrane protein crystallization,
structural biology (proteomics), enzyme replacement
and gene therapy, etc,. He organized workshops and
conferences in these areas and identified research
directions in need of development. Since leaving the
NIH, (1993), Dr. Katz has developed DHA- and
EPA-derivatized polycationic-lipophilic drug carriers
to the CNS. In 1998 he founded the Omega-3 Research
Institute, Inc. (O3RI), where he co-organized
international workshops on omega-3 fatty acids in
brain function, in diabetes and its cardiovascular
complications, in molecular and cellular aspects of
cancer and recently in verbal apraxia/dyspraxia.
During the last year Dr. Katz founded the Consortium
for Brain Fatty Acids, O3RI, a "center without walls"
that is providing a broad range of expert research
support to parties that require such. Dr. Katz
is co-developing the CHERAB Foundation's EFA-based
Lori L. Roth, MA, CCC-SLP, is a CHERAB Foundation
Speech-Language Pathologist and Oral Motor Specialist
with over 25 years of experience. She received her BA
degree in Psychology from G. Washington University in
Washington, D.C. in 1972. In 1974 she was awarded her
Masters of Speech and Audiology from the Catholic
University of America in Washington, DC. Ms. Roth’s
experience includes home- and hospital-based
rehabilitation, private and public school intervention
and private practice. Lori Roth was instrumental in
establishing an Infant Stimulation Program (called
Early Intervention) in Annapolis, Maryland. She has
mentored and trained graduate students in Speech and
Language Pathology from New York University, Columbia
University, Montclair State University and The College
of New Jersey as well as practicing therapists in the
State of New Jersey. Ms. Roth has presented
professional workshops for colleagues and regularly
acts as a consultant for private and public schools.
Organizers and Scientific Panel Members of the First
Conference on Verbal Apraxia/Dyspraxia
"Verbal Apraxia/Dyspraxia and Essential Fatty Acid
(EFA) Supplementation: A New Potential Therapeutic
Intervention," 23-24 July, 2001, Headquarters Plaza
Hotel, Morristown, New Jersey, U.S.A.,
Marilyn C. Agin, M.D., Medical Director, Early
Intervention, New York City, New York, and Medical
Director, CHERAB Foundation, Gillette, New Jersey.
(Also a scientific panel member)
Robert Katz, Ph.D., Managing Director, Consortium for
Brain Fatty Acids (CFBFA), Omega-3 Research Institute,
Inc., Bethesda, Maryland and EFA Director of Research,
CHERAB Foundation, Gillette, New Jersey (Also a
scientific panel member).
Scientific Panel Members:
Susan E. Carlson, Ph.D., Professor, University of
Kansas, Kansas City, Kansas, Member Consortium for
Brain Fatty Acids (CFBFA)
Joseph Hibbeln, M.D., Chief, Outpatient Clinic
National Institute of Alcoholism and Alcohol Abuse,
NIH, Bethesda, Maryland, Non-affilited Collaborator,
Nancy Kaufman, M.A., CCC/SLP, Director, Kaufman
Children's Center for Speech Language and Sensory
West Bloomfield, Michigan
Ann Moser,B.S., Manager, Peroxisomal Diseases and
Fatty Acid Profiles Clinical Laboratory,Kennedy
Krieger Institute, Baltimore, Maryland. (Also a
component laboratory of the CFBFA)
Jennifer Hill-Karrer, Ph.D., Associate Professor,
University of Kansas Medical Centre, Kansas City,
Kansas, and Collaborator CFBFA
Lori Roth M.A., CCC/SLP, Speech Pathologist, CHERAB
Andrew Zimmerman, M.D., Professor, Johns Hopkins
University and Kennedy Krieger Institute, Baltimore,
Maryland, and Collaborator, CFBFA.
Alexandra J. Richardson, MA, D.Phil., Senior Research
Fellow in Neuroscience, Imperial College School of
Medicine, MRI Unit, Hammersmith Hospital, London; and
University Lab. of Physiology, Oxford.
The Administrative Organizers:
Lisa Geng, President, Suzanne Smolyar, Executive Vice
President, and Glenn W. Geng Executive Director,
COMMUNICATION, HELP, EDUCATION, RESEARCH, APRAXIA BASE
Post Statement from The Scientific Conference
How did this Apraxia
/EFA Scientific Conference Come About?
that? (and how do EFAs tie in?) From a
developmental pediatrician's point of view. By
Marilyn Agin MD
that? (and how does apraxia tie in?) From a
scientist's point of view. by Robert Katz PhD
Official Statement from The First
Scientific Conference Dedicated to the Therapy of Verbal Apraxia/Dyspraxia!
You may want to explore the
archives of our grouplist.
First Scientific Conference on Therapy for Verbal
The First Scientific Conference on Therapy for
Verbal Apraxia/Dyspraxia, held on July 23-24, 2001 at the
Headquarters Plaza Hotel, Morristown, New Jersey under the
auspices of the CHERAB Foundation (http://www.apraxia.cc),
focused on "Essential Fatty Acids (EFAs) and Verbal
Apraxia: A New Potential Therapeutic Intervention."
A panel of scientific experts discussed the evidence
presented at the conference in the form of professional
anecdotal case reports on improvement of verbal communication
ability with EFA supplementation in this population. The
panel unanimously agreed that the existing scientific evidence
justifies planning and implementing a comprehensive clinical
trial to convincingly validate this new potential therapeutic
The panel discussed various clinical research
alternatives including the following:
A controlled case series trial using currently available
standardized speech assessment measures or developing new
clinical assessment profiles for baseline and post-EFA testing
A randomized, placebo-controlled multicenter clinical trial of
EFA and placebo supplementation to be undertaken as soon as
possible. For example, if a randomized, placebo-controlled
clinical trial would be undertaken, all diagnosed verbal apraxic
children, including those with hypotonia and sensory integration
disorder, who have not been supplemented with EFAs, would be
eligible for randomization. The panel suggested that all
randomized children would be supplemented with EFA or
placebo in addition to appropriate speech therapy. This
took into consideration the potential cooperative or possibly
synergistic effect of the combined therapies in the treatment
group. The length of the trial is proposed to be 3 months.
Improvement in verbal communication skills, or the lack thereof
using an assessment protocol as described above, would be the
major therapeutic outcome measured, and plasma, as well as
erythrocyte membrane EFA levels would be monitored periodically. The
two groups would consist of about 20-30 age-matched subjects.
ProEFA would be the therapeutic supplement used in the
trial based on preliminary successes attained.
In addition the panel noted the potential
availability of electrophysiological measuring instruments that
could serve as assessment tools of developmental-behavioral
characteristics of a verbal apraxic child, and recommended the
exploration of such techniques. While the panel refrained
from discussing the etiology and pathophysiology of verbal
apraxia, it also expressed great interest in what appears to be
a presence of verbal apraxia in a percentage of children on the
autistic spectrum and a possible association in other
disorders and syndromes, such as: hypotonia, sensory integration
disorder, dysarthria, attention deficit hyperactivity disorder,
Kabuki Syndrome and cerebral palsy. The panel recommended
further exploration of these phenomena.
Although no final decision was reached on the
nature of the clinical trial/trials to be undertaken, the
workshop ended with a commitment from all members to continue
debating this issue in close collaboration with the organizers,
and to reach a decision within the shortest timeframe possible.
The organizers thank all panel members for their
tireless dedication and enthusiastic participation in the
Workshop's deliberations, and thank all parents who contributed
to the success of the workshop, by requesting the professionals
supervising and treating their children to complete a
professional anecdotal case report questionnaire on the outcomes
of EFA supplementation. This workshop could not have taken
place without their assistance.
The organizers also wish to acknowledge with
thanks the assistance of many dedicated parents in helping with
the logistic aspects of the workshop.
Last but not least, the organizers are thankful
to the CHERAB Foundation's president, Ms. Lisa Geng, for her
support of this workshop, and her boundless energy and
enthusiasm in the service of verbal apraxic children and their
Agin, M.D., and Robert Katz, Ph.D.,
Medical Director, Early Intervention, New York City, NY
E. Carlson, Ph.D.
Professor, University of Kansas, Kansas City, Kansas
Member Consortium for Fatty Acids (CFBFA)
Chief, Outpatient Clinic
National Institute of Alcoholism and Alcohol Abuse
NIH, Bethesda, Maryland
Managing Director, Consortium for Brain Fatty Acids (CFBFA)
Omega-3 Research Institute, Inc.
Kaufman, M.A., CCC/SLP
Director, Kaufman Children's Center for
Speech Language and Sensory Disorders,
West Bloomfield, Michigan
Director, Peroxisomal Diseases
and Fatty Acid Profiles Clinical Laboratory,
Kennedy Krieger Institute, Baltimore, Maryland
University of Kansas Medical Centre, Kansas City, Kansas
Roth M.A., CCC/SLP
Speech Pathologist, CHERAB Foundation
Professor, Johns Hopkins University and
Kennedy Krieger Institute, Baltimore, Maryland
J. Richardson, MA, DPhil
Senior Research Fellow in Neuroscience, Imperial College School of
Medicine, MRI Unit, Hammersmith Hospital, London; and University
Lab. of Physiology, Oxford.
Guest Dinner Speaker:
W. Moser, M.D.
University Professor, Johns Hopkins University School of
Medicine Baltimore, MD Director of Neurogenics Department,
Kennedy Krieger Research Institute Baltimore, MD
Geng, President, Suzanne Smolyar, Executive Vice
President, and Glenn W. Geng Executive Director, Treasurer