Notes from presentation of research at Children's apraxia clinic

[Guest guest]

I attended the presentation two weeks ago and thought I'd share my

notes to those of you interested in reading about what Dr. deGrauw,

interim director of the apraxia clinic had to say about current

research and information regarding children with apraxia of speech.

Again, this is strictly my notetaking and does not reflect my opinion.

When noted, comments were noted about questions that parents raised

during the presentation. If you have questions, i will try to answer

them if I can.

Lori

Wednesday, December 3rd, 2008

Presentation of Research at Cincinnati's Children Hospital Apraxia Clinic

At Children's Mason satellite location with Children's apraxia parent

support group and St. Rita's apraxia parent group present

Dr. DeGrauw, Neurologist

Carol Grasha, SLP

http://www.cincinnatichildrens.org/svc/alpha/d/disabilities/clinical/apraxia.htm

Note: Dr. DeGrauw refers to apraxia as apraxia of speech, while Ms.

Grasha termed it Childhood Apraxia of Speech.

The Apraxia clinic at Cincinnati Children was started by a neurologist

who had an interest in apraxia. The clinic's focus has been on

management of the problem.

Apraxia's speech/language issues are not uncommon with brain disorder

i.e. epilepsy. 50% of children with epilepsy have apraxia.

Their research involves both neuro and s/l. Through previous research

neurologists have learned how to map out different locations of

cognitive functions in the brain, including the localization of speech

and language functions. Started with young children and tracked them

to see how s/l changes developmentally. The posterior part of the

brain is where the sensory function (input) is located. They

discovered that the anterior part of the brain is where there is motor

function (output i.e. speech).

Previously, based upon neurological studies of stroke adult patients,

this information was applied to children. The thought was that

children with apraxia of speech came from the anterior part of the

brain (output).

Currently, most MRIs of children with apraxia show no damage to the

brain. So, there is a new study/technique called functional MRI.

Children do activities while in the scanner so the researchers can see

the brain light up as the children do specific targeted activities.

They then can compare functional MRIs of a normal child vs. a child

with apraxia of speech.

Dr. DeGrauw commented that some babies have problems apparent at

birth. For example, difficult latching on while breastfeeding,

difficult feeding and fine motor issues. Coordination of throat and

mouth muscles requires more fine motor control than hand movements.

Apraxia is not just speech but a generalized fine motor problem.

Dr. DeGrauw stated that we understand the symptoms but we still don't

know what's behind it. They have abandoned the idea that it is just a

motor problem. There is a new study started 6 months ago that is

looking at brainwaves (MEG) with normal children. It is a new

technique and they are hoping to investigate apraxia of speech with

this.

Genetics- there are some genetic investigations linked to apraxia.

About 6 years ago, there was a study of a large family where 6 members

had apraxia. It was discovered they had the foxp2 gene. No one knows

what this gene does specifically, but for some children who have

apraxia, it is genetics i.e. foxp2 gene. Some families have no

abnormal genes (that they know of) but still have apraxia within the

family.

Drs are not sure if its metabolism within the brain or if it is nerve

cells not connecting with each other that's causing apraxia. By fluke

a radiologist was playing around with spectrograph, which is a

chemical analysis of the brain, of a 6 year old boy's MRI with

epilepsy. The MRI was normal, but the chemical analysis showed that

the boy had no creatine in his brain. He had a form of apraxia caused

by creatine deficiency. Researchers knew about creatine because of

sports and muscle development but no one really knew about creatine in

the brain. Unfortunately, creatine supplements did not help the boy.

This was believed to be an X-linked carrier issue.

Dr. DeGrauw said this was his take on apraxia of speech

1. it's a brain problem

2. its not just apraxia of speech but apraxia of everything

3. for many children, apraxia is the main issue, but there is a small

group of kids that have additional issues along with apraxia such as

adhd, short term/long term memory issues etc.

Autism is popular now. Researchers pick goals based on the thing to do

and so Autism is the thing to do now. Through this research, we are

learning more about brain systems. Apraxia of speech does not have

that clout. Need grants to pursue studies. Dr. DeGrauw talked about

how parent groups can really bring about the clout needed. He brought

up the MDA (Muscular Dystrophy) as an example of how it started out

with a few parents and became a huge nationally recognized group that

brings in millions of dollars a year for research.

Cincinnati's apraxia clinic has their own database based upon the

neuro/MRI evals, speech assessments done by Carol (i.e. Kaufman

apraxia assessment, receptive and expressive language assessments and

vocabulary test as well as from 's fine/gross motor and sensory

assessments. They need to do something with it now to try to find a

pattern among the kids and to identify kids earlier.

Their data does show that there is a 5:1 ratio of boys to girls who

have apraxia. Not sure why other than it may be X-linked factor.

Fish oil was brought up and asked if they were knowledgeable about

this. Carol Grasha said that she has heard many anecdotal from parents

who indicate its' success. Dr. DeGrauw was intrigued and stated that

they should do a study on this and anecdotal statements are often how

they learn new things. It would have to be a double blind study which

means that some children would receive a placebo and others would get

fish oil.

The positive side is that apraxia of speech seems to progress vs. most

neurological brain disorders deteriate over time.

Question was asked if it was possible that their current technology

just isn't able to determine brain injury that's linked to apraxia. He

said absolutely. Currently, one can do a CAT scan; a PET scan, but its

not as sensitive as newer technology; functional MRIs as mentioned

previously but it is difficult to do with young children because it

requires them to be still and follow commands to perform tasks. He

mentioned that there is a new MRI technology that is coming out that

can see and look at the brain connection between the anterior and

posterior (output/input).

In response to a question asked if kids who undergo MRIs also get

chemical analysis of their brain (see previous info regarding 6 y.o.

boy with brain creatine deficiency), he said that he orders it based

upon his observations of the child, that it usually involves a form of

mental retardation but not all neurologists will order it. He also

said that high dosages of supplements, vitamins, and creatine are not

safe and that people should not experiment with high dosages.

Question was asked if it is true that apraxia of speech is on the rise

among our children or it is just correct diagnosis as opposed to

previous labels of articulation disorders?

Dr. DeGrauw said that in order to find out if the number of kids dx

with apraxia of speech is on the rise, you need to involve an

epidemiologist to study that issue. Carol indicated that it does

appear there are more kids with apraxia today than in the past where

it was mostly kids with consistent phonological issues coming to her

speech practice.

Dr. DeGrauw stated that it may be that the focus on motor skills can

help to improve speech.

Question was asked about apraxia of speech being labeled as on the

spectrum with autism. Dr. DeGrauw answered that there are some

children who have autism that also have apraxia but there is a big

difference between the two and apraxia is not on the spectrum. Autism

involves a deficiency in being able to recognize facial expressions

which are part of communication skills. I.e. facial expression of

smiling vs. angry. We gather social clues from these facial

expressions and it tells us a lot in communicating with each other. We

take these for granted but they are very essential. The

speech/language deficit in autism is at the highest level of

communication. In addition. Those children with autism that also have

apraxia may not have coordination issues often found with children who

have apraxia of speech. He stated that autism is a cognitive disorder

and apraxia is not a cognitive disorder.

A parent brought up why her child can say some words in certain

situations, Dr. DeGrauw responded that Apraxia of speech seems to be

more around voluntary speech, for example, some kids can speak when

there is an emotional response or an automatic response.

Dr. DeGrauw talked about forming a partnership/collaboration with

these two parent groups present to bring about more awareness of

apraxia and to involve our children with their research studies.