Showing posts with label ACC Info. Show all posts
Showing posts with label ACC Info. Show all posts

Friday, January 18, 2013

Knowing Alex-print book now available!


You may recall that last year in September Cindy Mauro Reisenauer and Alex Reisenauer, a mother/son duo, co-authored a very personal (electronic) book titled: Knowing Alex, about living life with Agenesis of the Corpus Callosum.

At that time it was only available as an e-book, with the hopes that a print version of the book would soon follow.

Well, I just received an e-mail this morning from Cindy who informed me that the print version of their book Knowing Alex: Life with Agenesis of the Corpus Callosum is now available (for those of you who prefer a print copy--a regular paperback book).

Buy the print version.

Plus, they have just created a brand new website with information about their book.

http://www.knowingalex.com/

Read Amazon reviews of the book.

Have a look inside the Kindle version of the book to view the Table of Contents and read an excerpt.

Note: At this time the book is only available in English.

P.S. The previous e-book versions of Knowing Alex are still available for purchase, too.

Monday, March 14, 2011

Dr. Sherr talks about ACC



Dr. Elliott Sherr is a Pediatric Neurologist at
University of California, San Francisco (UCSF).
Dr. Sherr is highly knowledgeable and an expert
on Agenesis of the Corpus Callosum. He sees many
patients, children, who have ACC and Dr. Sherr
is highly respected and well-liked by parents.
Dr. Sherr is on the Board of the National
Organization for Disorders of the Corpus Callosum
(NODCC) and he speaks at the annual Conferences.

Dr. Elliott Sherr is also involved in a very large
Brain Development Research Study on ACC
.

I want to bring to your attention some excellent
resources that provide Dr. Sherr's knowledge
about agenesis of the corpus callosum. More
specifically:

At the 2004 NODCC Conference, Dr. Sherr gave
two presentations about Agenesis of the Corpus
Callosum. They are available as Conference
handouts [in outline form] to read below.

2004 Conference handout titled:
"ACC and Associated Features".

2004 Conference handout titled:
"How to Get the Most From Your Neurologist Visit".

In addition, both of the 2004 Conference Presentations
by Dr. Sherr, in their entirety, have been combined into
one DVD for viewing titled:

"Neurologic Issues in Disorders of the Corpus Callosum".
You can purchase the DVD from the NODCC store.

I own a copy of the DVD
(recently purchased) and find
it to be very informative. My son, Matthew, who has
complete Agenesis of the Corpus Callosum was diagnosed
at four months and he is 17 years old.

The 2004 Conference DVD is divided into two separate
Presentations:

"How to Get the Most Out of the Visit/Relationship
with Your Neurologist"

and

"Agenesis of the Corpus Callosum and
Associated Features"

A
few of the topics and information covered in
the "How to Get the Most Out of the Visit/
Relationship with Your Neurologist"
1st episode
of the DVD include:

Dr. Sherr says:


"I just want to say one thing: that there
are a lot of syndromes that are sometimes
associated with ACC where ACC is not
necessarily the principal issue. And that
doesn't mean that your child's not going to
have ACC related issues but it's important
to recognize that there's probably a lot
going on and ACC is a piece of that as
opposed to the primary driver of the issue."

Dr. Elliott Sherr was involved in an ACC Review
titled: "Agenesis of the corpus callosum: genetic,
developmental and functional aspects of
connectivity".

Genetic Syndromes occasionally and frequently
seen with ACC
can be found on Page 8.

CHILD NEUROLOGISTS:

Dr. Sherr states that they should be board
certified in child neurology.

ADVICE REGARDING MRI FILMS:

He says:


"You should have the copy of the films with
you and in today's day and age you can have
a copy on CD. You can also, if you want,
have a film copy as well." (for yourself).

Dr. Sherr talks about asking for a film
copy of the MRI for you to have. Then you
are able to take the MRI film copy with
you to doctors and specialists that your
child sees.

Also discussed on the DVD:

What Type of ACC is this?

complete ACC
partial ACC-hypogenesis/dysgenesis
thin corpus callosum-hypoplasia

What are the associated CNS changes?
CNS = Central Nervous System
(in other words) - Dr. Sherr says:


"When you look at the MRI what other things
are there that can be seen?"

Is the MRI interpretation accurate?

Dr. Sherr says:


"I will tell you...so you know we're doing
research in my group on ACC and so we've had
families from around the country send us their
films and I can tell you that the accuracy...
the families always send us the films and
frequently the radiology report is included
in there."...

"for somebody who is not used to looking at
brains of children on MRI they're more likely to
make that mistake because they just don't have
the experience of looking at them. So the
people that I work with have probably looked
at in excess of 10,000 brain MRI's on children
and so they have a fairly strong wealth of
knowledge about what is what, what is normal,
what is abnormal and if it's abnormal, what is it,
and that is actually very important. And so when
we got the films--we've gotten over 100 set of
films--and I'll tell you that about 5 to 10% of
them were completely wrong"...

"Even the best radiologists are going to make
mistakes."

"So how do you address that?"

Neuroradiologist and
Pediatric Neuroradiologist

"Who's reading the film? Is it a Neuroradiologist?

So there are Radiologists, people who are board
certified in radiology, but then there are people
who do an extra two years of additional training
and all they look at are images of the brain and
the spine and the nerve roots throughout the body
so they're more likely to be experts in reading
brains."

"And then there's another level. It's not
a level that you can get a little certificate for
but there is another level of specialization where
they're Pediatric Neuroradiologists, where all they
do all day long is look at MRI's and other imaging
modalities of kids' brains and kids' spines and the
reason that's important is that the developing brain
looks a lot different on MRI than the mature brain.
There's a lot that's going on obviously inside of
your child's head when they're developing and that
is actually seen to some degree when you take
pictures. when you take this MRI and somebody who
is an expert in that knows about what a brain is
supposed to look like at 3 months and how it's
supposed to look at 3 years, cuz those are very,
very different. And how you interpret the results
is based on your knowledge of knowing how the brain
looks as it progresses during development. So this
would definitely be one of those cases where if
only a local radiologist has looked at it, you
should request that the MRI be reviewed by a Pediatric
Neuroradiologist. And there are ways to have your
local doctor send the films to another radiologist
[Pediatric Neuroradiologist] for a second opinion
and I would pursue those."

Dr. Sherr says:


"Have your Neurologist show you the films and go
over the films with your Neurologist."

He says to question the Neurologist about the
indecipherable terms on the MRI report and have
them explain each finding to you.

MRI's in Children

Dr. Sherr says:


"There are certain things that we can see at
3 years we can't see at 3 months and so if your
child's first scan was at 3 months of age I
would recommend getting a second scan when
they're 3 or 4 years of age."

He provides more detail about this topic on
the DVD.

Preliminary Findings of ACC:
White Matter

Dr. Sherr states:


"Is there a correlation between what we see on
their MRI and how they're doing clinically?"
We did find something preliminarily. We found
that the clinical score correlates with the
amount of white matter and white matter is
insulation in the brain."

"So the more insulation [white matter] that
you're missing the more severe your clinical
condition was. And if the brainstem was
involved that was also correlating with
severity."

Dr. Sherr further states:


"Knowing more about the MRI is going to
provide you additional information about how
your child is likely to do. And I say likely
because this is just a rough correlation. It's
not a guideline. It's not an absolute-ism."

MRIs and ACC

Dr. Sherr says:


"Everybody should have one MRI at diagnosis
and, unless the diagnosis was made later in
life, should have a second MRI."

The DVD includes many other topics and
information about ACC.

At the end of the DVD Dr. Sherr took
questions from the audience. One
question was:


"Why do some people who have ACC function
fairly normally and live a relatively
normal adult life?"

Dr. Sherr replies:


"Some of that might have to do with other
places that fibers cross...so there's
something called the anterior commissure
and it's a place that fibers cross and it's
in front of and a little down from where the
corpus callosum is."



"And actually when we reviewed some people with ACC
we noticed that they had big anterior commissures,
suggesting that maybe fibers that should have gone
through the corpus callosum crossed through there.
So that's one possible explanation."

note:
Anterior commissure. Small band of approximately
50,000 axons that connects the cerebral hemispheres. The
anterior commissure connects the temporal lobes and is
located at the base of the fornix.


A
few of the topics and information covered in the
"Agenesis of the Corpus Callosum and Associated
Features"
2nd episode of the DVD include:

MRI features that can be associated with ACC:

*COLPOCEPHALY:

"This is a posterior enlargement
of the lateral ventricles that results from the
absence of the corpus callosum."

"Similar phenomenom is the 'steer-horn' shaped
lateral ventricles seen more anteriorly."

*UPWARD DISPLACEMENT OF LATERAL VENTRICLES

Dr. Sherr says:


"The first two [colpocephaly and upward
displacement of lateral ventricles] are
almost always seen with ACC...not always
but almost always...and it's just what
happens to the brain in the absence of
the corpus callosum."

"So it's not a separate diagnosis
all by itself. It [colpocephaly]
is intrinsic to the diagnosis of
ACC."

He also states:


"So it's like if you're building a building
and you take out scaffolding in one of the
main areas of the building then the
building's going to look different. It's
going to have support structures in
different places and so that's what's happening
to the brain."

"But it's not a separate diagnosis. It's
just what happens when the scaffolding,
which is the corpus callosum in a way, is
missing. The ventricle's going to bulge out."

"So colpocephaly and what radiologists
call steer-horn shape ventricles are a
consequence of the absence of the corpus
callosum."

*PROBST BUNDLES

The corpus callosum is made up of 200 million
axons (also referred to as fibers).

Dr. Sherr says:

"Axons are like the telephone wires that are
connecting all the phones together and they are
these wires and they go from one side of the brain
and they cross over to the other side of the brain.
And if they cross over to the other side of the brain
then the corpus callosum is formed and if they don't,
then where are they going to go...

So in certain individuals those fibers go to the middle,
they can't cross, presumably because the structure that
needs to be made in development, (what's called a callosal
sling) is not there and so instead they turn to the left
or they turn to the right and they go alongside the edge
of the callosum (or where the callosum would have been)
and form the Probst bundles. And it's unclear what this
means.

Some people think that if you have Probst bundles that
it correlates with a better diagnosis [outcome]. We
don't know that yet but that's hopefully one of the
things we'll be able to answer more definitively."

Dr. Sherr (in the DVD) goes on to point out visually
on an MRI image where the Probst bundles are.

He then says:

"Not everybody with ACC has Probst bundles but a lot
of people do have Probst bundles but we don't know the
significance of that yet."

*INTERHEMISPHERIC CYSTS:
*a. type 1 - communicate with ventricles
*b. type 2 - not communicate with ventricles
*c. continuum with lipoma

Dr. Sherr says:


"These cysts are fluid filled structures outside
of the brain matter proper."

"So actually when the brain is formed there
actually is a space between the two hemispheres
so it's not within the brain proper...it's sort
of like in between the two sides."

"And the current thinking is that cysts develop
in lieu of the corpus callosum."

*LIPOMA:

Dr. Sherr says:


"One thing that happens instead of a cyst
forming is that a little structure, that's
basically a fat collection, which is called
a lipoma, will form instead.

ACC Brain Images

In the DVD, Dr. Sherr also speaks in detail
about other brain anomalies seen with ACC.

Dr. Sherr said:


"If you just look at the number of people who
have just ACC and nothing else that's a smaller
percentage than the total, so most kids with
ACC are going to have ACC and something else."

Dr. Sherr explains the different views of
the brain on MRI films and shows examples.

Dr. Elliott Sherr advises:

"When you get an MRI scan you need people to do
Axial, Coronal and Sagittal views to get a true
picture of the structure of the brain."


Also discussed:

Can My Child Have ACC and:

Autism
Attention Deficit Hyperactivity Disorder
Obsessive Compulsive Disorder
Cerebral Palsy
Mental Retardation

Dr. Sherr says:


"The short answer is yes."

However, in the DVD he goes on to answer
in more detail.

ACC Syndromes with Molecular Genetic
Testing:

Dr. Sherr says:


"So these are examples where the gene is known
and it causes ACC."

Andermann Syndrome
Mowat-Wilson
ARX related syndromes
L1CAM

He also says that in his experience they are
very uncommon causes of ACC.

The DVD covers a lot more topics and
information about ACC.

At the end of the Presentation Dr. Sherr
took questions from the audience.

(a few of the questions are):

Question:


"Is it acceptable to request a typed up
copy, in layman's terms, of what the MRI
interpretation is?"

Dr. Sherr replies:


"The answer is absolutely yes."

Question:

"Symptoms that might trigger you to get
another MRI?"

Dr. Sherr replies:


"I think that the symptoms that would trigger
somebody to get another MRI down the road
would be a significant worsening. So if a child
is developing at his or her own rate and then
all of a sudden they stop developing or they
decline in development, that would be a reason
to get an MRI. If there's new symptoms that
are significant and not sort of part of things
that they're already doing, you need to
potentially get another MRI, and the last one
would be something that might need to be
discussed with your doctor, depending on what
they are."

Also available from the NODCC is Dr. Sherr's
presentation at the 2008 Conference on podcast, at
no cost, which includes
some of the same information
on the DVD from the 2004 Conference plus even
more information. In my opinion, the DVD and the
2008 Conference podcast are BOTH excellent
resources about ACC.


note: The DVD from the 2004 Presentation
gives the advantage of being able to see the exact
area of the brain Dr. Sherr is talking about (because

he uses a
red
light pointer to visually point to the specific
brain structure in the picture that he is discussing).
The 2008 Conference podcast displays still frame pictures
of the brain and you only hear Dr. Sherr talking about
specific areas of the brain, but do not get to visually
see them being pointed out.


note:
you will need to download the TechSmith
Screen Capture Codec (TSCC) to view the podcast:
download here.

2008 Conference podcast with Dr. Sherr

(a few interesting highlights are):

3 family generation of complete ACC and
partial ACC in one family. Dr. Sherr discusses
one family where ACC and partial ACC is seen
in a grandfather, children and grandchildren.

seen at time frame 12:44-15:26

Dr. Sherr states:


"All of these individuals with a corpus
callosum disorder did well or average in
school and the adults have jobs. So these
are folks who are functioning at a very
high level."

ACC and Heart Defects:

seen at time frame 32:53-33:49

Dr. Sherr says:


"Almost 1/4 of the kids had heart problems.
Now these are not innocent murmurs that then
go away. These are actually kids who have real
heart disease. So my recommendation on any child
with ACC is that they get a comprehensive heart evaluation."

Colpocephaly is discussed:
seen at time frame 38:52-40:29

Dr. Sherr says:


"And so if doctors say your child has hydrocephalus
you want to be very careful to ask them, well does
the child have hydrocephalus or does he or she just
have colpocephaly?"

Interhemispheric Cysts discussion
and other ACC features

seen at time frame 43:20

Question regarding Interhemispheric Cysts:

"Do they enlarge or do they stay the same?"

seen at time frame 49:09-50:44

Dr. Sherr's answer:


"I don't think I have good enough numbers yet
but I would say that the short answer is most
don't change in size and a few will change
in size.

"If a cyst enlarges it will result in the
symptoms of hydrocephalus and so usually what
that will mean is that the child will present
with some sort of symptoms...usually it could
mean things like vomiting, particularly vomiting
when you first wake up in the morning, if a child's
eyes seem to be pointing down too much instead of
being right in the middle of the eyelids, if the
child seems to be too sleepy (lethargic) that
could also be a sign of hydrocephalus."

"So for my patients in my clinic who have an
interhemispheric cyst, when they're little I'll
get an MRI every year for the first three years
of life and if there's no growth after three years,
then I'll do one more when they're 5 years of age and
then after that I won't do anything unless they have
symptoms. But that way...I think most of the kids that
have cyst enlargements, it happens early on."

It's definitely worth exploring these valuable
ACC resources mentioned in more depth for yourself.

You can also find additional resources about ACC
(including Conference handouts, podcasts, and other
items) available at the NODCC website.

Do you want to enroll in the ACC Research Study at
UCSF where Dr. Sherr and his colleagues are involved?
Please contact: Brieana Fregeau at 415-502-8039.


Monday, August 2, 2010

Video about ACC and Social Skills




Dr. Lynn K. Paul interviews the boy who has Agenesis
of the Corpus Callosum in the video.

Dr. Lynn Paul is the founding President of the National
Organization for Disorders of the Corpus Callosum

(NODCC). She is also one of the kindest, most caring
people I have met.

At a Conference in 2001 I watched Lynn Paul lead a panel
of kids who have ACC and then a panel of adults who have
ACC in a questions-answers session that was extremely
interesting and very eye-opening.

Not only is Dr. Lynn Paul a highly professional researcher
on the corpus callosum at Caltech, she is also genuinely
and naturally skilled in interacting with people of all
abilites.

The video focuses on the social aspect of Agenesis
of the Corpus Callosum and gives insight from Tony (the
boy in the video) and his dad and stepmom's perspective.

ACC Social Skills & Challenges

This article was written with the help and input from
many parents who have a child with Agenesis of the
Corpus Callosum.

Request a copy of this document

Friday, June 18, 2010

Believe...



When you have a baby or child who has
Agenesis of the Corpus Callosum you want
to know what to expect and how or if it
will affect them. Unfortunately, because
ACC has such a broad range of effects,
there is no way to tell for certain or to
predict what you can expect for your child.

Not knowing what to expect can be one of the
most difficult things to deal with emotionally
and can also be overwhelming at times...
especially if your child is making progress
very slowly and is slow to meet their milestones.

I can raise my hand high and personally
attest to this because my own child, Matthew,
who has Agenesis of the Corpus Callosum, is
developmentally delayed and he took a long
time to learn new things and to meet
milestones.

One of the sections of information that was
included in the ACC Reading and Comprehension
document dealt with this very subject in
quite an inspirational way. I think it's worth
repeating as a separate post because I believe
that the information that other parents share,
who have a child with ACC, is heartfelt and
encouraging and I hope that you will too.

UNIQUE WAYS OF LEARNING - Amazing
Examples:


When you think that a child with ACC isn't
learning...think again. They very well could
be taking in all kinds of information with
little to no progress showing outwardly.
Then one day it just appears out of the blue
much to everyone's surprise...even the child's
parents.

First parent writes:


"As a baby Abbie didn't babble. She was a very
serious baby. At about age 2 she went from
virtually no speech, apart from a few single
words and their varied mutations, to almost
full sentences. She'd obviously been listening
and observing."

Second parent writes:


"Lexie never babbled either. No mamamama or
bababababa. Also, she never said uh-oh like
all other babies. Same goes with what does a
cow say...."mooooo" Nope! She, too, was a very
serious baby. At age 2 she had virtually NO words.
Then suddenly, somewhere after 2, she began talking.
I would not say full sentences over night, but to
us it was drastic!"

Third parent writes:


"Ryan started speech therapy at 15 months old.
For three long months, once a week, his therapist
would go over the signs 'more, all done, open'
and maybe 3 or 4 other ones. He couldn't care
less! He never seemed to be looking at our
hands (of course I kept trying to teach him)...
he had lots of fun playing with her, but didn't
pick up on the sign thing AT ALL!

At 18 months we were on vacation in Ireland,
when his daddy realized he forgot the video
camera in the car. So he went to get it.
While he was gone, I was tickling and picking
up Ryan for about five minutes. Then I stopped.
Then we looked at each other and he signed "more".
I screamed 'what'? And he did it over and over
and over again. Just in time for the video camera!
By the end of our two week vacation, he was signing
more, all done and open. The amazing part is that
it really seemed like he never paid attn to the
therapist and to me for the three months we tried
to teach him those signs!

Luckily he got kicked out of speech therapy at
three yrs old when he said his first 10 word
sentence. Speech has never been an issue again."

Fourth parent writes:


"My child was not dry by herself at school until
first grade, and even then had some accidents. I
know some schools are icky about wearing Pullups.
She was in Pullups until she was about 11.
She also was not dry at night until 13.

And she started learning to drive at 15.5, but only
got good enough to pass the tests after years of
practice, both written and behind the wheel, at 20,
a fairly long learning curve.

She got her permit at 15.5, then took drivers' ed,
which was very hard. She took the written tests
for the class over and over again until she passed,
but her driving was very nervous, and her drivers'
ed instructor never passed her on it. She drove
with us quite a lot, but not with much confidence.
It helped when we got a smaller car, as she feels
more confident in that one than the minivan
or--heaven forbid--the pickup. But her class for
students with disabilities at the community college
did a lot of work on preparing for the written
(actually computer) part of the driving test.
They worked on it one whole quarter. They also
used the practice tests a lot of states have online.
I'm pretty sure that intense practice in that class
is what gave her the knowledge to finally pass it,
on her second attempt. She took the actual tests
for her license when she was 20, and passed both
the written (computer) and driving parts of the
test, each on her second try. Until she actually
did it, I never thought she would be able to.
We were in denial that it would ever be possible
right up until she actually had it in her hand.

Now she has wheels! She drives the 30 miles each
way to school almost every day. No sweat!"

I shared a story about my own child, Matthew,
with another parent recently:


"I had worked with him for one whole year trying
to teach him how to say the word "bye bye". We flew
to Hawaii and were waiting for our connecting flight
to Maui. My husband went outside for something and
out of the clear blue tropical sky I heard Matthew
say "buh bye" and I nearly did a little dance...the
kind of I can't believe he just SAID it dance. My
husband was gone and couldn't hear this wonderful
new first word that our SEVEN year old child just
said. I grabbed my cell phone and called my mom
(as Matthew was still saying "buh bye"..."buh bye")
and I got her answering machine. I put the phone
up to Matthew's mouth and he SAID "buh bye" a few
times. My mom heard it later and kept it on her
answering machine for years.

While Matthew is still non-verbal with only a
handful of words...I continue to help him with
speech because he makes a lot of sounds and is
trying hard to put simple words together even
though he doesn't know he's doing it. I hear him
sometimes out of the blue say a word while he is
watching TV. For example, he saw a baby on TV and
said "bay-bee" clear as day without any problem.
I will never give up on him talking and will
continue to work with him and believe in all of
the things that he is capable of doing no matter
how old he is or what anyone else thinks."

Fifth parent writes:


"Parker started reading in kindergarten, much
to our surprise. Nobody even knew he could
until his special-ed class had returned from
a field trip to a pumpkin farm. They were
sitting in circle time reading the kids names
that were written on the bottom of the pumpkins.
Well Parker started reading all the kids names,
mind you he didn’t really start talking until
age 5. The teachers were shocked and so they
went and got some flash cards to see if he was
reading or had just memorized the names. We
found out he had about 75 words, some of them
very odd like goat. I don’t even know where
he had ever seen that word. He didn’t like
me reading to him when he was little, but he
LOVED the close captioning on the TV. I guess
that’s where he learned it all!"

Newspaper Article: Finding 'the keys to Matthew'


In 1998 a newspaper article was written by
Meredith Goad titled: Finding 'the keys to Matthew'
The article is based on an interview with Gary and
Kathy Schilmoeller and their son, Matthew, who has ACC.
He was 22 years old at the time of the interview.

Finding 'the Keys to Matthew'

The interview reveals surprising and interesting
information about Matthew and his abilities and also
explains how ACC affects him.

Recently I shared my thoughts with another
parent:


"I have come to realize that even in those
--what seems to be little or no progress times--they
are working hard and learning in their own way,
making connections and the results of all that
'silent' learning appear one day out of the blue
after what seemed like the longest dry spell.
Finally, a rainbow!"

Never Underestimate What a Child With ACC is
Capable of Learning:




Always keep the door open to what a child with ACC
can do and learn. I speak from my own experience
as the mom of a child who has ACC. He beat the
textbook odds and took his first steps at the age
of 7 years among many other things. He continues
to amaze me all the time. I am not alone in this
revelation.

Parent of child with ACC
[who read a book at age 10 for the first time]
writes:


"I cried the first time Noah read for an hour by
himself. It sounded terrible to the normal mom
(he was very choppy), but to me it was beautiful."

This same parent also wrote:


"Now [at 11 years old] he is at a 3rd grade level
in 5th grade. He is still not very fluent. I
was told he may never read by his last teacher."

Parent of 16 year old child with ACC writes:


"My son William had a list of things (an entire
page long) we were told he "would never do." REALLY?
He was 3 years old when we received this list from
our "doctor". At 3, he spoke 5 words that were
understandable (mama, dada, jojo, baba, & more).
His speech was defined as "largely unintelligible
sentences" for *MANY* years. Meaning, we were
the only ones who truly understood him....that
was from age *3* to age ?? (sorry I lost track...
but it was a LONG time).

Well, let me tell you what a difference 13 years
of advocating for speech services can make...I
CANNOT keep him quiet now...he pretty much NEVER
shuts up (and I say that with TOTAL LOVE in my heart)
and he is *completely* *understandable*. He talks
"a mile a minute!" There is NO misunderstanding
him now!! He is even described by his teachers as
very polite and social. He has no problems with
his socialization skills.

Oh yeah one more thing, about that list we received
when William was 3 years old...I'm elated to say,
he does everything on that list and much more, with
ONE exception....he still cannot read, but he will
(I have Faith)...and as GOD is my witness, if it is
the *VERY* last thing we teach him...HE WILL READ."

What do you think? Please go ahead and add your
own comments.






Monday, June 14, 2010

Neuropsychological Evaluation



The topic of a Neuropsychological Evaluation is one
that comes up often in the ACC support group I
belong to.

The topic came up during the creation of the ACC
Reading and Comprehension document and although
the Neuropsychological Evaluation information was
included in that document, I believe it is worthy
to stand alone as a separate blog post in an effort
to view it more easily and in the hopes that it will
spark additional input and information from others.

The information gained from a Neuropsychological
Evaluation is valuable in terms of helping a child
who has Agenesis of the Corpus Callosum in the
educational setting.

In their article titled: Neuropsychological Assessment:
An Important Tool for Managing ACC"
,
Lynn K. Paul, Ph.D., and Warren S. Brown, Ph.D., say:


"Despite the similarities, each individual
with ACC has unique characteristics. The goal
of neuropsychological evaluation is to clarify
the particular pattern of strengths and
weaknesses present in the case at hand and
then to target specific abilities for intervention."

"(The length of evaluations vary.) A comprehensive
evaluation includes testing attention, memory,
sensory-motor skills, visual perception, language,
intellect, reasoning, social behavior, personality,
and emotions. It is particularly important in ACC
to assess pragmatic language, problem-solving
skills, and social communication."

Parent of child with partial ACC said:


"People are not always aware that some traditional
tests of reading comprehension sometimes do not show
how serious a problem can be. (You will not have that
problem with a neuropsychologist, I'm sure.) In the
public schools the testing for us always came out
pretty good, but was obviously (to me, not them) not
accurate. With the neuropsych we were able to get a
much better evaluation as well as a specific diagnosis
of LD for reading comprehension, in addition to
the OHI."

OHI = Other Health Impairment
LD = Learning Disability

NEUROPSYCHOLOGICAL EVALUATIONS:


Many parents who have a child with ACC highly
recommend having a Neuropsychological Evaluation.

The Evaluation can be costly, however, parents
report that the information gained from having
a Neuropsychological Evaluation for their child
is invaluable and worth the cost.

A Neuropsychological Evaluation can accurately
assess a child in the area of reading and
comprehension, diagnose problems, provide specific,
detailed information and suggest intervention
methods.

In addition, a Neuropsychological Evaluation will
also thoroughly assess the child and give insight
and intervention methods in all educational areas,
cognitive as well as behavioral.

In her document titled "Educational
Suggestions For Children With ACC: A Beginning"
,
Kathryn Schilmoeller, Ph.D. and parent to grown son
with ACC wrote:


"If I were in a position of advocating for Matt
in the public schools at this point, I would urge
the school to have a neuropsychological evaluation
done. We found such an evaluation to be invaluable
in terms of giving us some concrete suggestions
for the teachers working with Matt. My only regret
is that it took us until Matt was 15 to figure out
that that would be helpful. In our case, after the
testing was completed, Gary and I first had a
session with the neuropsychologist to go over the
results and ask questions. Then we had the
neuropsychologist attend a PET (pupil evaluation team)
meeting to go over the results. We video-taped this
session so that the video would be available for
his current teachers to review and new members of
Matt's team to view as they started working with
him. The school paid for all of this as part of
his triennial review."

Is there a particular age that is best for a child
to have a Neuropsychological Evaluation?

Second Parent of a child with ACC writes:


"I have heard mixed opinions on when a neuropsych
eval is worthwhile. My neuropsych said really
earlier than about 8 or 9 is just too soon, but
others have said as early as 4. Also, for my
child we are on a 2-3 yr plan. Lets set up 3yr
goals and then re-evaluate. Maybe right before
high school. Then again right before graduation.
He stressed, for my child, not to set goals too
long range. We do not know what the future holds
so let's not try to set our sights on college,
let's look at middle school and jump off the High
School bridge first then the college bridge.
It made it all look so much less daunting!"

Third Parent of a child with ACC writes:


"My son had a private neuropsych eval when he was
about 6 1/2 years old and in first grade. We
arranged this ourselves and finally convinced the
insurance to pay for it (after countless phone
calls and help from the doctor's billing office).
Having him evaluated was one of the best things
we've done on this ACC journey. The eval gave us
additional insight into my son's learning style
and needs. It also gave us a "professional's"
opinion that we could take to the school to
convince them that we did indeed know what we
were talking about. We found it very helpful as
we were crafting his initial IEP, halfway through
first grade. I pull out the page of recommendations
every time we have a meeting with the teacher or
the school."

Fourth Parent of a grown child with ACC shares
her viewpoint of a Neuropsychological Evaluation:


"We found that her neuropsychological
evaluation was extremely helpful. In her case,
it did pinpoint her reading difficulties (for
the first time), giving her a diagnosis of
"learning disabled for reading comprehension"
to go along with her OHI diagnosis provided by
the MRI. But that was just a small part of the
findings. The report also included all the
pertinent results of all other testing she had
had done over the years, as well as input from
teachers and from us.

She had been tested twice at school, and she also
had a private evaluation. They all found that her
academic levels were all at or above grade/age level.
Her IQ scores were quite variable, from high average
to borderline mental retardation. They didn't evaluate
anything else. None of those findings were helpful
at all. Her problems were attributed to "temperament"
or "anxiety," both of which were ludicrous to anyone
who knew her at all.

The neuropsych testing included similar intelligence
and academic testing, but other kinds as well. It
was far more detailed and accurate, assessing and
discovering learning deficits and problems that the
public school and previous private evaluations had
not. And the IQ results were far more reasonable,
in the low average range. She was also found to have
significant deficits in problem-solving and
higher-order thinking skills and "executive
functioning"--frontal lobe--skills.

She was evaluated within the year after her initial
ACC diagnosis, at age 17. I have heard that about
age 7 is the lower end of the age range for this
kind of assessment, and I think that would have
been the perfect age for her. This is when her
problems really began showing up, and when we started
looking for answers. I think that if we'd have had
it done that early, we would surely have wanted
another one when she reached 7th grade or at least
by high school, to track progress, to see if there
were any other findings that would become apparent
by that age, and to address recommendations for the
type of learning required for secondary success.
Of course this is all just speculation on my part.

The report outlined ways she could learn best and
gave recommendations for teachers."

This same parent goes on to tell additional
ways that having a Neuropsychological Evaluation
benefited her daughter:


"Even though we got this report so late in her
school career, I'm very glad that we had it done.
We used it to help her qualify for SSI benefits,
and were told by the person managing the case
that the evaluators were extremely impressed by
its thoroughness, which was far beyond anything
they'd have had done. She would never have
qualified on the first application without it,
and I doubt she'd have qualified even on appeal
if not for the information it contains. It was
also just what she needed to qualify for
accommodations and help from the college. So
for those two post-high school uses, she got it
just in time."

To give an example of some very specific information
contained in a Neuropsychological Evaluation for one
particular child who has ACC, I am including pertinent
sections of that child's Evaluation and findings.


The Psychologist wrote:


"My evaluation consisted of an initial interview
with Jamie's parents, (names parents), a review of
school and medical records provided by (names parents),
standardized behavior rating scales completed by
Jamie's parent and several teachers, and a selected
battery of tests with Jamie. Following the evaluation,
I had the opportunity to discuss my findings at length
with (names parents) during a feedback conference."

The specific tests used in the Evaluation were:


Wechsler Intelligence Scale For Children-Fourth Edition:

Full-Scale IQ
General Ability Index
Verbal Comprehension Index
Perceptual Reasoning Index
Working Memory Index
Processing Speed Index
Subtests Block Design
Similarities
Digit Span
Picture Concepts
Coding
Vocabulary
Letter-Number Sequencing
Matrix Reasoning
Comprehension
Symbol Search
Information

Woodcock-Johnson Pyschoeducational Battery-Third Edition
Test of Achievement:

Broad Reading
Brief Reading
Basic Reading Skills
Letter-Word Identification
Reading Fluency
Passage Comprehension
Word Attack
Broad Math
Brief Math
Math Calculation Skills
Calculation
Math Fluency
Applied Problems
Brief Writing
Spelling
Writing Samples
Academic Skills
Academic Applications

Gray Oral Reading Tests-Fourth Edition:

Oral Reading Quotient

Comprehensive Test of Phonological Processing:

Phonological Awareness
Rapid Naming

Additional Tests Administered:


Wisconsin Card Sorting Test


Boston Naming Test
Controlled Oral Word Association Test
Grooved Pegboard
Delis Kaplan Executive Function System
Wide Range Assessment of Memory and Learning-Second Edition
Child Behavior Checklist
Child Behavior Checklist-Teacher Report Form

The Psychologist wrote:


"Jamie's composite performance on the Gray Oral
Reading Tests-Fourth Edition, a functional reading
measure tapping oral reading skill development,
was below average (Oral Reading Quotient = X).
Jamie experienced particular difficulty on
variables from this measure related to fluent
reading, while his reading comprehension composite
fell in the low end of the average range.
Evaluation of memory functions indicated that
Jamie experiences significant difficulty with the
initial acquisition and retention of newly presented
information. His memory weaknesses are in excess of
what would be expected from a child with his level
of cognitive ability, and his weakness with the
acquisition of new information extends to both
verbal and nonverbal memory modalities. Jamie's
composite verbal memory performance from the Wide
Range Assessment of Memory and Learning-Second
Edition which correlates with the declarative
memory demands often placed on a child in the
classroom clustered far below average compared
to others his age (Verbal Memory Index = X).

Jamie is somewhat slower to complete activities,
and he is sometimes slower to organize his response
to specific tasks. Like general language weakness
and memory issues, these issues of performance
efficiency also likely stem from his neurological
conditions including agenesis of the corpus callosum
as well as epileptogenic activity. Given the extent
of Jamie's agenesis of the corpus callosum, cortical
dysplasia, and the additional complicating factor of
epileptic activity in his brain, from a cognitive
perspective it is remarkable that Jamie has developed
as well as he has.

From my perspective, I would strongly encourage
the educational team to consider Jamie's
primary disability as one that is characterized
by Jamie's neurological conditions including agenesis
of the corpus callosum, cerebral dysplasia, and
the presence of epileptic activity in Jamie's brain.
Due to the direct correlation between these
neurological conditions and Jamie's neurocognitive
functioning which forms the basis for Jamie's
educational development, I believe that Jamie can
be appropriately considered as meeting
special-education eligibility criteria under the
handicapping condition of Other Health Impairment
(OHI). Because this is most explanatory of Jamie's
struggles, I believe that the educational team
should consider making OHI the primary code for
Jamie. As I discussed with (names parent),
children with neurological abnormalities often do
not fit neatly into a pre-existing special-education
category such as Learning Disability (LD). While
Jamie was determined eligible under this code based
on the available information at that time, new
information regarding his neurological conditions
is now available that should supercede the LD code.
Clearly Jamie does not exhibit a learning disability
in the sense that Jamie's current level of academic
skill attainment is significantly discrepant from
Jamie's overall level of cognitive ability. Because
Jamie's neurological conditions directly result in
weaknesses in academic skill development I do not
think that a discussion of Learning Disability as
traditionally defined is particularly relevant to
Jamie's case, as Jamie's learning difficulties
clearly stem from known neurological issues that
directly affect those neurocognitive processes
important for efficient learning. Due to the nature
of the neurological processes involved and given
that epileptogenic activity is an active and dynamic
process, Jamie may sometimes perform in a manner
that is quite inconsistent from one day to another.
Due to difficulty remembering some things, it would
not surprise me if parents and educators had the
experience of Jamie seeming to know something
one day and not recalling it very well the next.
On the topic of memory inefficiency, it is
important to understand how this can impact a
child's performance at school. First, it is
important to recognize that memory inefficiency
can limit the amount and completeness of the
information that the child is able to initially
take in. Sometimes multiple exposures of the
information, and multiple modalities of information
exposure, are necessary to give the child their
best opportunity to successfully encode the information
presented to them. Similarly, children with
inefficiency of learning and memory due to
neurological issues are at significantly greater
risk for being inconsistent in their retention
and later recall of information. Sometimes,
altering the way a question is asked can be
successful in accessing information that the
child has retained but is not able to spontaneously
draw out of their memory (e.g., asking a multiple-
choice question versus a fill in the blank question).

Additional strategies for dealing with Jamie's memory
inefficiencies include:

• Multiple repetitions of information is a
necessary, though sometimes mundane, component
of ensuring that information is satisfactorily
encoded and retained. For children, often the
trick is to be creative in getting the child to
pay attention and put forth effort on an otherwise
tedious task. Sometimes incentives (rewards) can
be offered to a child to help keep them motivated.
Other children simply need frequent breaks in order
to stay motivated to repeat information over and
over. Making the activity of repetition novel and
fun can go a long way in boosting a child's
motivation to go over information multiple times.
Incorporating hands-on activities, using manipulatives
(objects), and using music are some ways that a
child's interest in an otherwise mundane activity
might be boosted.

• Priming - discussion of related topics and how
these may relate to the information at hand. Priming
is especially useful during recall tasks. Previewing
is a type of priming that is done before exposure to
the information in order to activate neural networks
that may then link to the information at hand. Using
recognition memory tasks is also a method of priming.
For example, if a child has trouble spontaneously
reproducing their spelling words, using a multiple
choice format is sometimes helpful.

• Using authentic (real-life) tasks - experiential
learning is typically more efficient than situations
in which the student is given information and expected
to remember it. Experiences that are most salient and
meaningful to Jamie are likely to be remembered best.
Unfortunately, pure skill-based academic tasks
(e.g., reading skills) can be somewhat difficult to
translate into experiential tasks, though reading
practice is easy to translate into meaningful daily
activity.

• Rhymes, chants, and music - this can be especially
helpful for memorizing and retaining relatively small
amounts of factual information.

• Movement - involving movement into learning and
rehearsal of information can sometimes be effective.
For example, some people study effectively by pacing
and rehearsing information aloud to themselves.

• Minimize anxiety - if a child becomes excessively
anxious and/or perceives himself to not be competent
to remember something or retrieve some information
from memory, clearly this can interfere with optimal
performance. Thus, anxiety-producing conditions should
be kept to a minimum. For example, some children become
very anxious during timed activities. A little anxiety
can enhance performance, but more than a little anxiety
can interfere with task performance. For Jamie, it will
be important to identify and minimize conditions that
unnecessarily or artificially create anxiety when this
is not inherent to the task (e.g., allowing Jamie to do
math calculations but not necessarily imposing a
stringent time limit if this tends to create a great
deal of anxiety for Jamie)."

This is only a glimpse of the child's Neuropsychological
Evaluation. The complete Evaluation consists of
a total of sixteen pages. It contains very detailed
information regarding background history, test
results, behavioral observations and results of
behavior rating scales as well as detailed
conclusions and recommendations.


test scores have been replaced
with an "X" for privacy.


UPDATE: 

Neuropyschological Evaluation-FAQs


Any additional
information/comments from you
pertaining to Neuropsychological Evaluations
and your own experience is greatly appreciated.

Friday, February 19, 2010

The ABC's of ACC



Please keep in mind that not all kids who have
Agenesis of the Corpus Callosum are alike in
terms of how they are affected or how they learn.

Agenesis of the Corpus Callosum has a very broad
range of how it can affect a person.

With that being said, hopefully The ABC's of ACC
will help give teachers some insight and offer a
quick reference of key things seen in some kids who
have ACC.

ABCs of ACC - printable version



Agenesis of the Corpus Callosum
Definition: Agenesis of the Corpus Callosum is a congenital defect.
A child who has ACC (or a corpus callosum disorder) is born with it. Agenesis = missing or absent. Therefore, a child who has ACC is completely missing their corpus callosum. The corpus callosum is the largest commissural pathway in the brain consisting of over 200 million nerve fibers and allows for communication between the two hemispheres of the brain.


Abstract reasoning is often very difficult.
Abstract humor is often challenging.



Be Observant.
Breathe and begin teaching.
Be ready to take a detour as often as needed.
Behavior challenges may be present in some kids.
Broad range of how ACC can affect a person.
Believe in the child's abilities.
Break tasks down into small steps.
Build a child's confidence.




Confidence helps a child learn.
Celebrate the uniqueness of each child.
Confusion comes with too many directions at once.
Communication with parents is crucial.
Computers can help a child express knowledge.
Concrete thinking is common.
Communication can be a challenge.
Calculators used for math are common.
Counting money can be a challenge.




Don't put limitations on a child's ability to learn.
Diligently explore ways to help a child learn.
Depth perception issues may be present.
Detours are often helpful teaching avenues.
Decoding what a child says may be necessary.
Demonstrating what they know can be difficult.
Delayed response time is common.




Encourage a child often.
Expect they do their best.
Every child can be affected differently.
Eagerly find a doorway to the child's learning path.
Extra time to process info and answer a question.




Fix your mind on positive thoughts.
Find what works even if it takes all year.
Find methods that speak to their strengths.
Find creative ways to express what they know.
Focusing may be difficult.
Fine motor skills may be weak.



Graciously give respect to the child.
Give a child every opportunity to learn.
Give extra time to process info and answer questions.




Headaches or migraines happen in some kids.
Handwriting may be difficult.
High Pain Tolerance is common.
Homework log with teacher or aide's assistance helps.
Have Patience.
Have fun.





Instant responses may be difficult.
Irony and idioms are often very difficult.




Just try one more approach to help a child learn.
Just when you think it won't happen, it clicks & they learn.




Keep the door open to what a child can learn.
Keep trying new teaching methods until one works.




Listen to the child.
Let the child be the guide.
Literal thinking is common in kids who have ACC.
Loud noises may bother/scare some kids.
Language: finding the right words can be difficult.
Learning some new skills often happens slowly.




Motivation is a must!
Marvel at the miraculous ways a child is learning.
Music: singing words may teach more easily.
Math is often very challenging.




Never give up.
Neuropsychological Evaluations are very helpful.
Non-Verbal Learning Disorder may apply to some kids.
No progress for long periods before they learn it is common.



Observe a child's learning style carefully.
Organizing assignments and homework can be difficult.
One-on-one aides can help a child stay focused,
on task and organized.




Patience is a must.
Praise promotes confidence & learning.
Pre-teaching can be very helpful.
Present information as concretely as possible.
Processing information takes time.
Pragmatics-language used in social context-is often weak.
Parent/Teacher communication is essential.





Quiet work areas may help some kids.
Quick on the spot responses may be difficult.




Repetition, Repetition, Repetition!
Reading Comprehension is often difficult.
Recalling & Retrieving information may be easy one day;
the next day the child may struggle to recall or
completely forget it.
Remembering homework and assignments can be hard.
Reading social cues in others is often difficult.
Renewal for everyone is rewarding.




Self-Esteem is SO important.
Seek creative, fun ways to help a child learn.
Staying focused and on task may be difficult.
Stumble upon a new teaching method when least expected.
Slow response time is common.
Social Skills are often weak and behind.
Sensory issues may be present in some kids;
Sensory Processing Disorder.




Think outside the box.
Take a break when needed.
The child may easily recall info one day and struggle or
forget it the next day.
Tying their shoes tends to be terribly difficult.
Taking tests often requires additional time.
Taking notes can be easier when typing.
Teacher/Parent communication is essential.




Understand that every child who has ACC is unique.




Victory on the mountaintop is worth all the effort!
Verbal expression may be challenging.
Verbal words may come slowly and get mixed up.




Welcome a child's input and feelings.
Writing can be difficult for some kids.
Words may not come easily for a child who has ACC.
Word play is often very difficult.




X-ray a child's mind and learn how they think.





Yes they can and they will learn.





Zestfully believe in the child and all their potential.
Zestfulness for teaching a child makes learning fun.


ABCs of ACC - printable version


Did you think of something else to add to this list
that applies to your child who has ACC?

Please take a minute to add your own ABC thru XYZ comment
or you can send me an E-mail if you prefer.

I can't wait to see what else you come up with.

If you prefer to have a copy of this document in
Word version please send an E-Mail request.

Thursday, January 14, 2010

ACC-Listserv E-Mail Support Group




Finding support from other people who know
from experience what it's like to walk in your
shoes is an absolute blessing!

Join the ACC-Listserv

The ACC-Listserv is an e-mail support group
that was created by Gary and Kathy Schilmoeller
who are also the co-founders of the ACC Network.
They have two grown sons, one of which has ACC.
The ACC Network is the first place I received
information about ACC from back when my son,
Matthew, who has complete Agenesis of the
Corpus Callosum, was very young.

After many years of helping people all over
the world, The ACC Network is no longer operating.
However, they still have the ACC-Listserv
E-Mail Support group available to anyone who is
interested in joining in on discussions about
various topics concerning ACC.

The ACC-Listserv is a place where you can
address your concerns, fears, worries, where
you can ask questions, share victories,
achievements, share your thoughts and feelings
and receive support from others who understand.

It can put you in touch with hundreds of
people all over the world who can relate
to you.

It could be a great way to address your
concerns, questions and receive a variety of
input, tips, suggestions from many parents
who are also dealing with specific areas of
concern that you are dealing with.

If you are the parent of a child who has
ACC, an adult who has ACC, the caregiver of a
person who has ACC, a therapist, teacher,
grandparent, family member or anyone else,
I encourage you to consider checking out
the ACC-Listserv. Everyone is welcome to
join.


Join the ACC-Listserv

Monday, January 11, 2010

Music, Motivation & Mentor



A very heartfelt story was shared several months
ago by the mom of, Kevin, a boy who has complete
Agenesis of the Corpus Callosum in the ACC-Listserv
support group I belong to. With her permission
I am posting it here:


"Just wanted to share something with all of you. Kevin
has always been interested in music. He tried playing
in the band when he was in the seventh grade, but after
a semester, his band director took aside and told us
that he was not able to play in the band. He said that
he just didn't have enough coordination to master the
instrument. We had been told by his drs. that
this was probably going to be true when he was diagnosed
at 8 yrs. old. So, we weren't surprised. His twin
brother played the tuba all through high school and
Kevin started being the football trainer and continued
all through high school. Casey, his twin, is not C-ACC
like Kevin.

Casey became interested in playing the guitar when
he was in high school and got pretty good at it by
teaching himself. Kevin wanted his brother to teach
him how to play also. But Casey didn't spend a lot
of time teaching him and got very frustrated. so that
was ended quickly. Now at 22 yrs. old Kevin met a
friend that is in a band who is looking for a guitar
player. He told Kevin that if he wanted to join he
would teach him to play. The first advice he gave him
was to buy a left-handed guitar. He started giving
Kevin lessons once a week. He has been teaching him
for about 3 months now. I heard Kevin playing the
guitar in his room today and he was excellent! He
has surpassed his brother's guitar skills. What a
thrill it was to listen to him play.

Moral of the Story: Never limit what your child
cannot accomplish because a dr. said it wasn't
possible. I am definitely guilty of that. But I am
working on it."

Cherry, mom to Kevin, C-ACC, 22, Casey 22, and David, 26

Saturday, December 12, 2009

Agenesis Corpus Callosum & Growth



Recently I responded in an online Agenesis Corpus
Callosum (ACC) e-mail support group to the
following question and thought I would share
it here:

Can Agenesis Corpus Callosum Affect Growth?

I am also the mom of a boy, Matthew, who is adopted.
We adopted him at birth and found out he had ACC
when he was four months old. I think every parent
will agree with you that receiving the diagnosis
of ACC for their baby/child is a shock and moving
through all of the overwhelming emotions, questions,
concerns is not an easy task. I cried A LOT during
the first year after my son was diagnosed and went
through tidal waves of emotions...but it did calm
and become easier.

YES, when a child has ACC they may also have
growth problems and it can affect their growth.
Because ACC can affect growth and cause other
various hormone issues, it is very important that
child be seen by a good pediatric endocrinologist
to rule out any problems.



Some children who have ACC require growth
hormones. My own child, Matthew, began seeing
a pediatric endocrinologist when he was younger
because he was very short and nearly below the
growth chart on his height. His weight was fine
but he could wear the same shirts and pants for
two plus years and always looked about two years
younger than the kids in his class. He had various
blood tests to check all of his hormones and he
also had an x-ray of his wrist/hand to check the
bone age. All of his hormones were fine and his x-ray
showed that his bone age was a little over two
years behind his real age. He was (and still is)
followed every year by his pediatric endocrinologist
for a check-up. Also, when a child has ACC they
may not start into puberty or may start puberty
too early or too late. It was explained to me
that because the pituitary sits very close to
where the corpus callosum should be (in the middle
of the brain) that there is the possibility that
the pituitary may also have a problem and may not
function properly. My son started into puberty
without any medical intervention or need for
hormones and is doing fine. He didn't start
puberty until about age 14 years.

ACC is a midline defect and because the corpus
callosum is in the middle of the brain there
is the possibility that the child can have
other midline defects (such as a cleft lip
and/or palate. Another example is the heart
since it is midline in the body. My son had
a heart murmur and because he has ACC he was
seen by a pediatric cardiologist and had tests
to rule out any heart defects/problems.

ACC can also be seen with other medical problems
such as chromosome anomalies, genetic syndromes,
metabolic disorders and optic nerve or eye
conditions.

When a child has ACC they should be seen by a
pediatric ophthalmologist to rule out any optic
nerve problems and/or eye problems. Sometimes
kids who have ACC have a wandering eye (wanders
out or wanders in) (exotropia or esotropia) and
they can prefer to use one eye to focus instead
of using both eyes together. They are at risk
for having amblyopia (permanent loss of sight)
if they continue to use only one eye to focus
because the brain will shut off vision permanently
to the eye that is not being used. It is my
understanding from our own pediatric
ophthalmologist that the risk of amblyopia is
possible until about the age of eight years old
in a child. They are followed VERY closely by a
pediatric opthalmologist to be sure that the
child is using both eyes to focus and to help
the weaker eye become stronger using various
ways...such as patching the stronger eye to force
the weaker eye to be used. Sometimes a child will
require surgery to the eye muscle. My own son did
require eye surgery (on his right eye only) after
patching was not effective.

Below is a link to a list of medical options to
consider and discuss with your child's doctor(s):

http://scenicbeauty.tripod.com/WhatComesNext.html

Please feel free to e-mail me anytime. I am happy to share anything about my own son, Matthew, and our experiences with ACC.


Sandie *Mom to 16 year old Matthew with complete ACC*

Disclaimer:
The information found on this web site is written based upon my own personal experiences and comes from what I have learned while dealing with my son's ACC. Please seek the advice of a qualified physician for medical advice.