The First Scientific Conference Dedicated to the Therapy of Verbal Apraxia/Dyspraxia. Professional anecdotal overseen by CAPT Joseph Hibbeln, M.D.
The First Scientific Conference on Therapy for Verbal Apraxia/Dyspraxia
The following was from ‘The First Apraxia Conference’ July 23-24, 2001, Headquarters Plaza Hotel, Morristown, New Jersey USA and 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
CHERAB FOUNDATION SCIENTIFIC PROGRAMS
The first scientific conference for therapy of verbal apraxia/dyspraxia entitled: “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., was organized under the auspices of the CHERAB Foundation and CAPT Joseph Hibbeln, M.D. 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 in verbal 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 ROLE of 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, New Jersey 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: speech, 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 improvement. 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 cores 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 (2.7(1.0).
The Perspective of a Developmental Pediatrician:
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/Communication
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.
Conclusions:
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 groping behaviors.
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.
Post Conference Statement
The First Scientific Conference on Therapy for Verbal Apraxia/Dyspraxia
History How This Conference Came About
History Of NN ProEFA 369 And The First Apraxia Conference
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 Research Program, 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 programs.
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.,
Organizers:
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, CFBFA
Nancy Kaufman, M.A., CCC/SLP, Director, Kaufman Children’s Center for Speech Language and Sensory Disorders, 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 Foundation
Andrew Zimmerman, M.D., Professor, Johns Hopkins University and Kennedy Krieger Institute, Baltimore, Maryland, and Collaborator, CFBFA.
Guest Panelist:
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:
CHERAB Foundation
Lisa Geng, President
Suzanne Smolyar, Executive Vice President
Glenn W. Geng Executive Director, Treasurer
Consumers United for Evidence-Based Healthcare (CUE) is a national coalition of health and consumer advocacy organizations committed to empowering consumers to make the best use of evidence-based healthcare (EBHC).
Posted: November 7, 2001 by cherab
Letter to the FDA regarding mercury levels
Letter to the Food and Drug Administration regarding the dangers to health of indiscriminate ban of 4 kinds of fatty fish from pregnant women and newborns due to possible high mercury levels
Dr. Marjorie l. Davidson,
Center for Food Safety and Nutrition
Food and Drug Administration
Washington, D.C.
Dear Dr. Davidson,
Please forgive my unsolicited appeal to you. But a recent FDA advisory recommending limited consumption of specific fish (shark, swordfish, tilefish and king mackerel) by pregnant women, due to potentially high mercury levels has relevance for fish oil supplements marketed for their omega-3 oil content. In regard to fish oil supplements the population at large does not know that MeHg binds to proteins and therefore it is not of concern in highly purified fish oils. They also have relevance for fish consumption decisions of the population at large. These recommendations come at a time when the American Heart Association recommended the consumption of two fish meals per week (preferably fatty fish) to the general population as a means of omega-3 fatty acid intake and reduction of risks from cardiovascular disease. The FDA recommendations could discourage pregnant women from consuming perfectly healthy oily fish and this could jeopardize their intake of omega-3s, specifically DHA essential for the fetus’s brain development and the mental health of the mother.
I am asking a simple question. Given that the Omega-3 Research Institute, Inc., (O3RI) has already established a program to provide high quality oils for clinical trials (see http://www.omega3ri.org/), could O3RI be of assistance to the FDA in clarifying the implications of the above FDA recommendations for the general public? For example: through a specific educational program and/or through establishment of a clearinghouse for information on environmental toxins in fatty fish and perhaps fish oil supplements, etc. The public is reacting in a panic mode, especially because medical professionals, OBGYNs, pediatricians and cardiologists are discouraging the public from eating fish. I heard recently a medical call-in radio program in which a cardiologist, involved with nutrition and physical exercise was discouraging the listeners from eating fish with the rhetorical question: “Why would you want to store mercury in your body?” The interviewer’s response to that was: “We should remember that, it is good advice”. It would be very unfortunate if regulations meant to preserve the health of pregnant mothers and their developing embryos and fetuses would result in an aggravated omega-3 essential fatty acid deficiency harming the developing fetus brain and eye development, the newborn, the developing child and the mother. In essence it could harm the entire population by endangering the cardiovascular health of those who are above 40 years of age and prone to coronary heart disease.
Please let me know if I can be of any assistance to you in avoiding potential undesirable side effects to the recent well meaning ruling.
Sincerely,
Robert Katz, Ph.D.
Director of Research, Cherab Foundation
President, Omega-3 Research Institute, Inc.
3 Bethesda Metro Center, #700
Bethesda, MD 20814
Tel: 301-961-1918
Fax: 301-417-9087
E-mail: [email protected]
Web URL: http://www.omega3ri.org
Posted: October 9, 2001 by cherab
Docosahexaenoic Acid (DHA) Relation to Term Breast-fed Infants
Source:
Are human milk long-chain polyunsaturated fatty acids related to visual and neural development in breast-fed term infants?
Department of Paediatrics, University of British Columbia, Vancouver, Canada.
Innis SM, Gilley J, Werker J.
OBJECTIVE: To determine whether docosahexaenoic acid (DHA) is related to visual and neural development in term breast-fed infants.
DESIGN: A prospective study of 83 infants who were exclusively breast-fed for at least 3 months. We determined red blood cell and plasma fatty acids at 2 months, visual acuity at 2, 4, 6, and 12 months, speech perception and an object search task at 9 months, Bayley’s mental development index and psychomotor development index at 6 and 12 months, and novelty pReference at 6 and 9 months.
RESULTS: The infant red blood cell phosphatidylethanolamine DHA was significantly related to visual acuity at 2 months of age (r = 0.32, P =.01) and 12 months of age (r = 0.30, P =.03). The ability to discriminate nonnative retroflex and phonetic contrasts at 9 months of age was related to the plasma phospholipid DHA (r = 0.48, P <.02) and red blood cell phosphatidylethanolamine DHA (r = 0.26, P =.02) at 2 months of age after adjusting for covariates. CONCLUSION: DHA may influence the development of visual acuity and neural pathways associated with the developmental progression of language acquisition in term breast-fed infants. The extent to which our results can be attributed solely to DHA from maternal sources through breast milk or in gestation or other confounding factors remains to be determined.
Posted: September 30, 2001 by cherab
Apraxia -What’s That?
Answer from a developmental pediatrician
Presented by Marilyn C. Agin , MD, Medical Director, New York City Early Intervention Program and Medical Director, Cherab Foundation Co-Author of The Late Talker book
Presented at the First Apraxia Conference hosted by Cherab Foundation, July 23-24, 2001, Headquarters Plaza Hotel, Morristown, New Jersey and all presented at Research Workshop – September 20-21 and on September 22, 2001 ‘ Fatty Acids in Neurodevelopmental Disorders’ St Anne’s College, Oxford, UK
What’s in a Name and Definitions
What is apraxia, verbal apraxia (or apraxia of speech or verbal dyspraxia), orofacial apraxia and motor apraxia. How is verbal apraxia treated?
Apraxia is a neurogenic impairment involving planning, executing and sequencing motor movements. Verbal apraxia affects the programming of the articulators and rapid sequences of muscle movements for speech sounds (often associated with hypotonia and sensory integration disorder). Oral apraxia involves nonspeech movements (e.g., blowing, puckering, licking food from the lips). Motor apraxia involves the programming of hand or whole body movement.
Neurodevelopmental Evaluation of Verbal Apraxia: History
Nerodevelopmental Evaluation: Physical Neurologic Exam
Assessment of Respiration and Phonation
Oral Motor Assessment
Speech/Language/Cognitive Assessment (1)
Speech/Language/Cognitive Assessment (2)
Association with Other Disorders
Some examples are:
(1) Rapin, ed (1996) Preschool Children with Inadequate Communication
(2) Wetherby, et al (2000) Autism Spectrum Disorders
Verbal Apraxia Controversies (1)
Nomenclature:
Name borrowed from adult model
In adults, apraxia is an acquired condition
Stroke or head injury
Affects Broca’s area and sensorimotor cortex of the dominant hemisphere
Verbal Apraxia Controversies (2)
Etiology
Specific site of lesion has not been demonstrated on a consistent basis in children
EEGs suggested that praxis area in young children involved large cortical areas of both hemispheres with lateralization to left hemisphere in later childhood (1)
Other studies (2,3) report “soft signs” on neurologic exam
Early neuro-imaging studies typically negative (4)
Most studies: small samples, outdated (1) Rosenbeck & Wertz (1972)
(2) Yoss & Darley (1974)
(3) Ferry , Hall $ Hicks (1975)
(4) Horowitz (1984)
Verbal Apraxia Controversies (3)
Diagnosis: Exclusive vs. Inclusive
Group of speech researchers see verbal apraxia as solely a motor speech disorder (1, 2)
This renders apraxia a rarity (estimates 1-2%/1000 live birth)
Misses a great many children with more global dyspraxic syndromes associated with verbal apraxia
They propose that verbal apraxia is more like a symptom cluster or even a spectrum disorder (1) Hall et al. (1993) Developmental
(1) Hall et al. (1993) Developmental Apraxia of Speech
(2) Hayden (1998) PROMPT Manual
Appropriate Therapy (1)
Intensive and frequent
Individual (no benefit from group therapy)
Repetitive practice for habituation of motor learning
Multisensory, including touch-cue system (PROMPT)
Core vocabulary
Successive approximations
Melodic, rhythmic (singing rhymes)
Appropriate Therapy (2)
Difficult course resistant to “traditional methods”
Regression and learning to speak one word at a time
Use of “total communication” approach (e.g. sign language, PECS and augmentative communication devices)
Oral motor techniques–if indicated
“Children with apraxia of speech required 81% more individual therapy sessions…to achieve a similar functional outcome” Campbell (1999) Clinical Management of Motor Speech Disorders
Early Diagnosis (1)
Ongoing developmental surveillance and screening by pediatric practitioners Policy statement from the AAPediatrics and the American Academy of Neurology-CNS
Dispel the myth that all “late talkers” (with no receptive language are “Little Einsteins” (He/She will outgrow it)
Listen to parental concerns because they are accurate indicators of true problems
Dworkin et al (1997) Contemporary Pediatrics
Glascoe (1995) Pediatrics
Early Diagnosis (2)
Referral to Early Intervention
Improves outcome
At no cost for families (in most states)
N-D specialists (neurologists developmental pediatricians) should work collaboratively with SLPs (speech language pathologists) in determining correct diagnosis and treatment plan
Role of Essential Fatty Acids
Supplementation appears to cause dramatic leaps in development in children receiving combination of fish oils (omega-3s) and borage or evening primrose oil (omega-6 oils)
The effect is greater than one can expect from speech therapy alone
Can this effect be clinically validated and how do we account for it?
Posted: September 25, 2001 by cherab
Cherab Foundation’s First Apraxia Conference
The First Scientific Conference Dedicated to the Therapy of Verbal Apraxia/Dyspraxia. Professional anecdotal overseen by CAPT Joseph Hibbeln, M.D.
The following was from ‘The First Apraxia Conference’ July 23-24, 2001, Headquarters Plaza Hotel, Morristown, New Jersey USA and 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
CHERAB FOUNDATION SCIENTIFIC PROGRAMS
The first scientific conference for therapy of verbal apraxia/dyspraxia entitled: “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., was organized under the auspices of the CHERAB Foundation and CAPT Joseph Hibbeln, M.D. 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 in verbal 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 ROLE of 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, New Jersey 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: speech, 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 improvement. 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 cores 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 (2.7(1.0).
The Perspective of a Developmental Pediatrician:
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/Communication
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.
Conclusions:
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 groping behaviors.
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.
Post Conference Statement
History How This Conference Came About
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 Research Program, 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 programs.
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.,
Organizers:
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, CFBFA
Nancy Kaufman, M.A., CCC/SLP, Director, Kaufman Children’s Center for Speech Language and Sensory Disorders, 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 Foundation
Andrew Zimmerman, M.D., Professor, Johns Hopkins University and Kennedy Krieger Institute, Baltimore, Maryland, and Collaborator, CFBFA.
Guest Panelist:
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:
CHERAB Foundation
Lisa Geng, President
Suzanne Smolyar, Executive Vice President
Glenn W. Geng Executive Director, Treasurer
Posted: August 7, 2001 by cherab
Two Day Trip to NYC for Inside Edition Filming
This 2 day trip, which was a first trip to New York for both mother and son, also gave Khalid and Cindy the ability to have some fun while they shared their story about growing up with a speech disorder with Inside Edition TV for their segment on apraxia and the Cherab Foundation.
Thanks to the generous donations to the Cherab Foundation from Summit Grand Hotel, Mars 2112 restaurant in NYC, One If By Land restaurant in NYC, and the Empire State Building, we were able to fly Khalid, who has now “overcome” apraxia, and his mother Cindy in from New Mexico for our August meeting, “What happens to children with apraxia when they grow up?” and take them out on the town!
( view the Inside Edition post here )
Posted: August 6, 2001 by cherab
Inside Edition Segment
On August 6, 2001, Inside Edition did a feature story on Apraxia. After about 30 hours of taping, and hours of editing down to 5 and a half minutes, we were left with one powerful segment.
Families that have helped raise awareness to bring all our children a voice via TV! Behind the scenes photos of some of the families in the TV segments.
If you would like to purchase a copy from Inside Edition, please call them at 212-817-5656, or 1-800-EDITION. Or you can visit their website at Inside Edition, then ask for the segment on “verbal apraxia,” August 6, 2001, the segment producer is Stefanie Linzer. We are not involved in the sale or distribution of this segment.
Posted: July 9, 2001 by cherab
Plasma fatty acid levels in autistic children
Source:
Laboratoire de Nutrition et Sécurité Alimentaire, INRA
domaine de Vilvert, 78352 Jouy-en-Josas cedex, France
Vancassel S, Durand G, Barthélémy C, Lejeune B, Martineau J, Guilloteau D, Andrès C, Chalon S.
Phospholipid fatty acids are major structural components of neuronal cell membranes, which modulate membrane fluidity and hence function. Evidence from clinical and biochemical sources have indicated changes in the metabolism of fatty acids in several psychiatric disorders. We examined the phospholipid fatty acids in the plasma of a population of autistic subjects compared to mentally retarded controls. Our results showed a marked reduction in the levels of 22: 6n-3 (23%) in the autistic subjects, resulting in significantly lower levels of total (n-3) polyunsaturated fatty acids (PUFA) (20%), without significant reduction in the (n-6) PUFA series, and consequently a significant increase in the (n-6)/(n-3) ratio (25%). These variations are discussed in terms of potential differences in PUFA dietary intake, metabolism, or incorporation into cellular membranes between the two groups of subjects. These results open up interesting perspectives for the investigation of new biological indices in autism. Moreover, this might have new therapeutic implications in terms of child nutrition.
Posted: September 5, 2000 by cherab
The LCP Solution
A Must Read! Marilyn Agin M.D. believes this book has credible information that is worth exploring further. Our son Tanner’s amazing positive results with EFA’s are in this book too. read from Dr. Stordy’s book
—– Original Message —–
From: Malcolm Nicholl
Sent: Tuesday, August 01, 2000 5:21 PM
Subject: Dr. Stordy book
Hi,
Just wanted to thank you again for your assistance and let you know that the publisher has decided to “rush-release” the book that I have written with Dr. Stordy.
It’s called “The LCP Solution: The Remarkable Nutritional Treatment for ADHD, Dyslexia and Dysraxia.” (LCP, of course, stands for long chain polyunsaturated fatty acids).
Authors: B. Jacqueline Stordy, PhD and Malcolm J. Nicholl. Publisher: Ballantine. Trade paperback. $14.00. It should be in the bookstores September 5th. The publisher is talking about bringing Dr. Stordy to the states for a two-week, eight-city promotional tour later in September.
We’ve already had some wonderful advance reviews from two best-selling doctor-authors:
*****
Edward Hallowell, co-author with John T. Ratey of “Driven to Distraction,” one of the best books ever written about ADHD:
“What higher praise can I offer than to say that this book got me to try the LCP solution on myself and my family members? Of course, we need more research into the whole topic of nutrition and the brain before we can draw definitive conclusions, but this book offers a most persuasive, and potentially dramatically helpful, approach to improving the lives of people who have ADHD, dyslexia, and dyspraxia. This is an excellent book, presenting a fascinating idea.”
*******
Christiane Northrup, MD, author of the best-selling “Women’s Bodies, Women’s Wisdom”:
“Several years ago I began researching the effects of one of the LCPs known as DHA and was astounded by the well-documented link between this essential fat and brain health. Ever since, I’ve told every pregnant woman I’ve met to start taking this stuff ASAP! The LCP Solution contains everything you need to know about how to achieve brain health through proper dietary supplementation with LCPs. This book is must reading not only for those suffering from ADHD and related disorders, but also for everyone interested in optimal brain health at an age.”
**********
I’ll keep you posted.
Regards, and thanks again for your contribution.
Malcolm
Published by Ballantine. September 5, 2000
Posted: August 6, 2000 by cherab
Signs of Apraxia… from a Speech Language Pathologist
Dear Parents;
All these terms thrown at you and nowhere to go to get answers to your questions about your child’s diagnoses? Here are some critical differences that may help you to determine what, and if, your child is Verbally Apraxic. Your reports from therapists may contain the phrases in italics below.
Your child may say the same word four different ways. Sound errors are significantly inconsistent.
Your child adds vowel sounds to the end of words that finish with a consonant (Up-pa). Intrusion of a vowel.
Apraxic children may be able to produce sounds in imitation, which they do not use in connected speech.
Your child becomes less and less understandable as his speech unit gets longer. Severity of apraxia increases as the length of the word or utterance increases.
Your child tends to mix-up consonants within a word. Sound swapping errors are common (efelant vs elephant). Metathetic errors are frequent.
Your child may drop final consonants in single syllable words (omission errors) simplifying his/her speech unit to contain consonant-vowel pairs in short strings. “Cat come home” = “Ca co hoe”.
Your child may not be able to change his pitch during speech production. Prosodic disturbances of speech, pitch, stress and rate are frequently in error.
Your child may use only /b/, /m/, /d/, /g/, /z/ with simple vowels like /uh/, /ah/, /oh/, but not /p/, /t/, /k/, or long vowels /ay/, /ee/, /i/ or /ow/. Voicing errors, nasal resonance errors, and lengthening vowels before omitted consonants are present.
Your child has difficulty repeating two different consonant + vowel pairs over and over again. Marked difficulty repeating series of speech sounds in diadokokenetic series /patika/.
Other elements of difference include:
a big discrepancy between your child’s ability to move his/her lips, tongue and jaw for eating or non-speech activities and the use of these parts during speech on command.
general normal EEG/MRI results
the ability to understand everything said to him/her. Normal receptive language.
traditional speech therapy techniques are ineffectual. General speech progress is slow and requires intensive, appropriate, speech therapy.
Apraxia of speech is not a developmental disorder but a neurological disorder. A pediatric neurologist evaluation along with a speech assessment from an experienced speech therapist will be crucial for an accurate diagnosis.
After that, the therapy approach should focus on the motor planning issue, as well as the language issue. Reading and writing expression will need consideration as well. Just presenting a word as a model will not meet an apraxic child’s needs for therapy. Visual cues and kinethestic or tactile information must also be provided. The goal of therapy should always be to increase the automatic movement of speech and increase functional communication as quickly as possible.
Lori Roth MS CCC/SLP