Preventing Speech and Language Disorders in Children With Classic Galactosemia
| Status: | Recruiting |
|---|---|
| Healthy: | No |
| Age Range: | Any |
| Updated: | 2/14/2019 |
| Start Date: | January 31, 2017 |
| End Date: | March 30, 2039 |
| Contact: | Beate Peter |
| Email: | Beate.Peter@asu.edu |
| Phone: | 4809654737 |
Babble Boot Camp: Preventing Speech and Language Disorders in Children With Classic Galactosemia
A critical knowledge gap is whether proactive intervention can improve speech and language
outcomes in infants at known risk for communication disorders. Speech and language
assessments and treatments are usually not initiated until deficits can be diagnosed, no
earlier than age 2-3 years. Preventive services are not available. Children with classic
galactosemia (CG) hold the keys towards investigating whether proactive services are more
effective than conventional management. CG is a recessively inherited inborn error of
metabolism characterized by defective conversion of galactose. Despite early detection and
strict adherence to lactose-restricted diets, children with CG are at very high risk not only
for motor and learning disabilities but also for severe speech sound disorder and language
impairment. Delays are evident from earliest signals of communication and persist into
adulthood in many cases but speech/language assessment and treatment are usually not
initiated until deficits manifest. However, because CG is diagnosed via newborn screening,
the known genotype-phenotype association can be leveraged to investigate the efficacy of
proactive interventions during the acquisition of prespeech (2 to 12 months) and early
communication skills (13 to 24 months). If this proactive intervention is more effective than
standard care regarding speech and language outcomes in children with CG, this will change
their clinical management from deficit-based to proactive services. It will also motivate
investigating this approach in infants with other types of known risk factors, e.g., various
genetic causes and very low birth weight.
The Babble Boot Camp is a program for children with CG, ages 2 to 24 months. The intervention
is implemented by a pediatric speech-language pathologist (SLP) via parent training.
Activities and routines are designed to foster earliest signals of communication, increase
coo and babble behaviors, support the emergence of first words and word combinations, and
expand syntactic complexity. The SLP meets with parents online every week for 10 to 15
minutes to provide instruction, feedback, and guidance. Close monitoring of progress is
achieved via regularly administered questionnaires, a monthly day-long audio recording, and
the SLPs weekly progress notes. At age 24 months, the active phase of the Babble Boot Camp
ends and the children receive a professional speech/language assessment, to be repeated at
ages 36 and 48 months.
outcomes in infants at known risk for communication disorders. Speech and language
assessments and treatments are usually not initiated until deficits can be diagnosed, no
earlier than age 2-3 years. Preventive services are not available. Children with classic
galactosemia (CG) hold the keys towards investigating whether proactive services are more
effective than conventional management. CG is a recessively inherited inborn error of
metabolism characterized by defective conversion of galactose. Despite early detection and
strict adherence to lactose-restricted diets, children with CG are at very high risk not only
for motor and learning disabilities but also for severe speech sound disorder and language
impairment. Delays are evident from earliest signals of communication and persist into
adulthood in many cases but speech/language assessment and treatment are usually not
initiated until deficits manifest. However, because CG is diagnosed via newborn screening,
the known genotype-phenotype association can be leveraged to investigate the efficacy of
proactive interventions during the acquisition of prespeech (2 to 12 months) and early
communication skills (13 to 24 months). If this proactive intervention is more effective than
standard care regarding speech and language outcomes in children with CG, this will change
their clinical management from deficit-based to proactive services. It will also motivate
investigating this approach in infants with other types of known risk factors, e.g., various
genetic causes and very low birth weight.
The Babble Boot Camp is a program for children with CG, ages 2 to 24 months. The intervention
is implemented by a pediatric speech-language pathologist (SLP) via parent training.
Activities and routines are designed to foster earliest signals of communication, increase
coo and babble behaviors, support the emergence of first words and word combinations, and
expand syntactic complexity. The SLP meets with parents online every week for 10 to 15
minutes to provide instruction, feedback, and guidance. Close monitoring of progress is
achieved via regularly administered questionnaires, a monthly day-long audio recording, and
the SLPs weekly progress notes. At age 24 months, the active phase of the Babble Boot Camp
ends and the children receive a professional speech/language assessment, to be repeated at
ages 36 and 48 months.
Speech and language assessments and treatments are usually not initiated until deficits can
be diagnosed, which occurs at age 2-3 years at the earliest. Preventive services are not
available. Children with classic galactosemia (CG) hold the keys towards investigating
whether proactive services are more effective than conventional management. CG is a
recessively inherited inborn error of metabolism characterized by defective conversion of
galactose. Despite early detection and strict adherence to lactose-restricted diets, children
with CG are at very high risk not only for motor and learning disabilities but also for
severe speech sound disorder and language impairment. Delays are evident from earliest
signals of communication and persist into adulthood in many cases. As with most other
children, speech and language assessments and treatment are usually not initiated until
deficits manifest. However, because CG is diagnosed via newborn screening, the known
genotype-phenotype association can be leveraged to investigate whether proactive
interventions during the acquisition of prespeech (2 to 12 months) and early communication
skills (13 to 24 months) can mitigate the speech and language deficits. If the investigators
show that interventions during the first two years of life are more effecting in improving
speech and language outcomes in children with CG, compared to traditional care, this will
change their clinical management from deficit-based to proactive services. It will also
motivate investigating this approach in infants with other types of known risk factors for
communication disorders, e.g., various genetic causes and very low birth weight.
The investigators created an intervention program designed to support communication abilities
during the prespeech and early speech and language stages for ages 2 to 24 months. The Babble
Boot Camp (BBC) is implemented via parent training by a speech-language pathologist (SLP)
with expertise in early childhood using Vidyo, a HIPAA-compliant telepractice software
provided for free by the PI's institution, to connect with the families. Vidyo runs on
computers, tablets, and smartphones. Parents learn about the typical milestones of prespeech,
speech, and language development, potential red flags for delays, and importantly, activities
that support typical development for all stages of the program. Following an orientation to
the program, the SLP meets with each family once per week for training and consultation on
the relevant activities given the child's current speech/language status. Examples of
activities are stimulating and reinforcing coos and babble, enriching the child's linguistic
environment with joint book reading and pointing out the names of objects , and expanding
child utterances to provide slightly more complex model sentences. The key principle
underlying all activities is the zone of proximal development, also referred to as
scaffolding, where parents provide speech and language models that bridge what the child can
already to and what is slightly beyond the child's skill set: the model is in the zone of
skills that the child can do with help. One key skill that is targeted throughout the program
is imitation. The program brochure includes the rationale, instructions, and examples for
each activity, such as (direct quote from the brochure): "Expanding on your child's utterance
will provide a model for more complex sentence structures as well as increase her/his
vocabulary. An added benefit is to let your child hear words in their correctly produced
forms when her/his own productions are showing some incorrect speech sounds. This will build
your child's awareness of what the word should sound like and get her/him ready to try the
correct form. Throughout your daily routine, listen to your child's utterances and expand
upon them slightly. You can add descriptive words or fill in some missing words to make a
more complete sentence without overwhelming your child's ability to comprehend your sentence.
Examples: Child: "Goggie bye-bye." Parent: "Yeah, that doggie is going bye-bye!" - Child:
"Mommy doing?" Parent: "What is Mommy doing? She is taking Sammie outside."
be diagnosed, which occurs at age 2-3 years at the earliest. Preventive services are not
available. Children with classic galactosemia (CG) hold the keys towards investigating
whether proactive services are more effective than conventional management. CG is a
recessively inherited inborn error of metabolism characterized by defective conversion of
galactose. Despite early detection and strict adherence to lactose-restricted diets, children
with CG are at very high risk not only for motor and learning disabilities but also for
severe speech sound disorder and language impairment. Delays are evident from earliest
signals of communication and persist into adulthood in many cases. As with most other
children, speech and language assessments and treatment are usually not initiated until
deficits manifest. However, because CG is diagnosed via newborn screening, the known
genotype-phenotype association can be leveraged to investigate whether proactive
interventions during the acquisition of prespeech (2 to 12 months) and early communication
skills (13 to 24 months) can mitigate the speech and language deficits. If the investigators
show that interventions during the first two years of life are more effecting in improving
speech and language outcomes in children with CG, compared to traditional care, this will
change their clinical management from deficit-based to proactive services. It will also
motivate investigating this approach in infants with other types of known risk factors for
communication disorders, e.g., various genetic causes and very low birth weight.
The investigators created an intervention program designed to support communication abilities
during the prespeech and early speech and language stages for ages 2 to 24 months. The Babble
Boot Camp (BBC) is implemented via parent training by a speech-language pathologist (SLP)
with expertise in early childhood using Vidyo, a HIPAA-compliant telepractice software
provided for free by the PI's institution, to connect with the families. Vidyo runs on
computers, tablets, and smartphones. Parents learn about the typical milestones of prespeech,
speech, and language development, potential red flags for delays, and importantly, activities
that support typical development for all stages of the program. Following an orientation to
the program, the SLP meets with each family once per week for training and consultation on
the relevant activities given the child's current speech/language status. Examples of
activities are stimulating and reinforcing coos and babble, enriching the child's linguistic
environment with joint book reading and pointing out the names of objects , and expanding
child utterances to provide slightly more complex model sentences. The key principle
underlying all activities is the zone of proximal development, also referred to as
scaffolding, where parents provide speech and language models that bridge what the child can
already to and what is slightly beyond the child's skill set: the model is in the zone of
skills that the child can do with help. One key skill that is targeted throughout the program
is imitation. The program brochure includes the rationale, instructions, and examples for
each activity, such as (direct quote from the brochure): "Expanding on your child's utterance
will provide a model for more complex sentence structures as well as increase her/his
vocabulary. An added benefit is to let your child hear words in their correctly produced
forms when her/his own productions are showing some incorrect speech sounds. This will build
your child's awareness of what the word should sound like and get her/him ready to try the
correct form. Throughout your daily routine, listen to your child's utterances and expand
upon them slightly. You can add descriptive words or fill in some missing words to make a
more complete sentence without overwhelming your child's ability to comprehend your sentence.
Examples: Child: "Goggie bye-bye." Parent: "Yeah, that doggie is going bye-bye!" - Child:
"Mommy doing?" Parent: "What is Mommy doing? She is taking Sammie outside."
Inclusion Criteria:
- Newborn diagnosis of classic galactosemia
- Any ethnic or racial background
- Primary language in the home is English
- Any geographic region in the US and other countries because the intervention is done
online
- Computer and internet access (we can help if a family wants to participate but doesn't
have this access)
- At least one parent must have at least an 8th grade education to be able to fill out
the questionnaires
Exclusion Criteria:
- Other forms of galactosemia outside of classic galactosemia
- Medical, sensory, or psychiatric condition that could introduce confounding, e.g.,
Trisomy 21 or deafness
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