Thursday, August 25, 2011

ACC & Moms-To-Be Story #11

I am very thankful to all of the Moms who want to tell
their story about being pregnant and having a baby with
Agenesis of the Corpus Callosum.

Each story is as unique as each child who has ACC.

Tracy, Mom of Jose, read one of the ACC Pregnancy Stories
on this blog, written by another mom, and she posted a
comment on the other mom's story. In Tracy's kind
comment she also expressed a desire to share her own
ACC Pregnancy Story here for others to read.

I got in touch with Tracy through e-mail and am
absolutely thrilled and very grateful to be able to
include Tracy's ACC Pregnancy Story here.

Thank you very much, Tracy. It is a privilege to
be able to share your story here on the blog. I
thank you from my heart for your desire to help
other people (and new parents-or parents-to-be)
through sharing your own personal ACC pregnancy
experience and story.

Written by Tracy:

Jose's Story

Our story begins during my awful pregnancy. I say awful, because that is exactly what it was. I gained 120 pounds. with our son, was in constant pain, had sciatica to the point where I could not walk for two months, had false labor a few times, a cyst bigger than a golf ball, and that is just the tip of the iceberg. When I was around 20 weeks pregnant I was seeing a high risk doctor due to all of my complications. When doing the ultra sound he informed my fiancĂ© and I that he was concerned that our son’s (yes, he was now officially a boy) nerves in his brain were not developing as quickly as he would like, and he was concerned our child may have Down Syndrome. My heart dropped. The next 12 weeks felt like an eternity. All I did was pray and research. At 32 weeks, he informed us that he could not see the Corpus Callosum and our son was so stubborn he refused to move, even after the doctor tried to move him! We returned home, said more prayers and did more research. I was set to be induced at 34 weeks due to my placenta showing signs of starting to deteriorate. I went to the hospital 3 cm dilated and at positive 2. After two days of Pitocin and Cervidil, I was still only 3 cm, and my son was now up in my rib cage. I had to have an emergency C-section.

My son arrived on June 28, 2008, at almost 9pm! He had all his fingers and toes, was healthy as an ox, weighed in at
7 lbs 1 oz., and almost had perfect Apgar scores! I wasn’t sure if my son was different, but to me he was perfect.

Jose at 1 week old

When he was around 6 weeks old, he went for an MRI at the Children’s Hospital. It was confirmed that my son has Complete Agenesis of the Corpus Callosum. I was still unsure of what this meant for us. I did the research, but there was no hard evidence, just the whole wait and see that we still get to this day! What I did know was, I had a plan. I was determined to stick to my plan at all cost. Something inside of me told me what to do. Call it divine intervention or mother’s intuition, I had already put my plan into action, and now I knew I could never stop. We went home, and needless to say I broke down. There is no way to sugar coat it, it is the worst news any mother can ever get. I cried, I blamed myself and then got up the strength to suck it up and do what I knew I had to do.

Jose at 4 weeks old

What was my plan exactly? The main focus was treating him like a normal child, with a few exceptions. I knew he would need to be comforted a little bit more, and need extra attention. This is why my fiancĂ© and I decided that I would now be a stay at home mom. While the income would be tight, we knew our son needed the one on one care. I only gave our son Enfamil Lipil formula, because the DHA and ARA content more than doubled that of its competitors. I knew that DHA helped aide in brain development, and was dead set on it. I read to my son every night, so much so that we could read 3 full length Disney books and he would keep his focus. Call me crazy, but I also started flash cards with him the day he came home from the hospital. Letters, numbers, shapes, and colors. My philosophy was if he needed extra time to learn, I was going to reinforce it as much as possible. I didn’t sing the typical lullabies either. I sang the alphabet, and a made up song of me counting one to one hundred. This was my son, and since there was such little information out there, I decided to go with my gut!

Around 6 weeks, my gut told me that there was something wrong with my son’s feet. I took him to 3 different doctors, and they all assured me he had a good range of motion and I shouldn’t worry. So I didn’t. My son also seemed to sleep a lot. He slept through the night from the day that he was born, and most of the day. As a new mother, I just assumed that babies needed their sleep. Turned out, it was just him needing sleep. He did however; give me his first smile at 6 weeks old. I was cleaning the house, and walked into the bedroom. I will never forget how his face lit up and this amazing smile filled his face! It filled my heart with so much joy, as it was the first sign that my baby boy knew who I was.

At 3 months old my son was starting to sit up on his own, but he would fall over a lot. By 6 months old, he weighed 30lbs, and didn’t do much of anything. The doctors were baffled that he was only eating 24 ounces of formula a day, because he was so big. They even had us admitted to the hospital so they could monitor how much he was eating. Low and behold, they discovered I was telling the truth, and didn’t find anything else wrong with him. At 6 months he did bless us with his first word, Dada! He also learned to roll from his belly to his back!

Jose at 6 months old

By 9 months old, it became clear that my son was different. I saw other babies his age walking, or about to walk, but he couldn’t do much of anything. He could say Mama, Dada, Baba, and Bobo (the Spanish word for pacifier). We applied to the Early Intervention program in our state, and it was the best decision we ever made. He qualified for PT (Physical Therapy), OT (Occupational Therapy), and Speech Therapy. They showed us many things that we could do to help our son.

Jose at 1 years old on his 1st Birthday

When our son turned a year old, the pediatrician told us he would most likely be a vegetable for the rest of his life. My initial response was devastation. Once again I sucked it up, because we refused to accept it. We put more focus on him and everything in his life became a form of therapy. Our son must have heard this because within the week, he could finger feed himself and said two additional words! He also stopped using his bottle and pacifier. We also let him sleep in a toddler bed, in which he learned to push himself off of, and he never once fell off!

Jose at 18 months old

By 18 months old my son could army crawl and roll over. By 2 he could crawl.

Jose crawling on mat
Note: faces of other kids covered for privacy

By 2 ½ he could walk unassisted for a short distance in his walker.

Jose using his walker
Note: faces of other people covered for privacy

It was also like a switch in his brain flipped! It seemed as if he just woke up and started telling us things. He could spell his name, name all of the animals and their noises, knew all of his shapes, colors, and alphabet! He was also diagnosed with spastic diplegic cerebral palsy and 5 % tibial torsion.

Our son is now three years old and amazes his doctors with his intelligence. He currently weighs 55 lbs and is still getting up on his feet and using a walker! The weight issue baffles them, as well as the whole issue with only from his knees down turning in. We do Botox injections and oral Baclofen, but they barely aid with his spasticity. We are currently trying to convince his neurosurgeon to give our son a Selective Dorsal Rhizotomy and then we want to proceed with an orthopedic surgery to correct any in-toeing that is left over. We then believe that he will walk without any assistance. He is the most laid back loving child that anyone ever meets. He is filled with hugs and kisses almost all day long!

My greatest advice to anyone just getting the diagnosis, is to not give up on your child when the doctors think that things are impossible. Children with this condition are capable of so much more than anyone could possibly imagine. We are fortunate to have another family in our life with a little girl one year older than our son with the same diagnoses. They are very similar to each other in terms of reaching milestones, with the exception that she started talking earlier and she is a lot more vocal! They both seem to show advanced intelligence levels! (She also started DHA from birth) So please, look at my son as a story of inspiration. He has gone from the doctors telling us he would never be anything more than a vegetable to having advanced cognitive function, and the biggest issue seems to be the nervous system issues with the C.P. (Cerebral Palsy). However, he gets around well with his walker, and with today’s surgical technique he will most likely walk by the time he enters kindergarten!


There are many different stories and outcomes of ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Thursday, August 18, 2011

Learning Tools & Ideas #2

Agenesis Corpus Callosum
Parent Teaching Tip:

Parent of 6-year-old child with ACC and hydrocephalus, says:

"When our son was non-verbal we used the Signing Time
videos to teach him sign language. He was already
infatuated with music so the videos held his attention."

Note: check your local library to borrow Signing Time videos.

"We also used the multi colored foam letters and numbers as
a bath tub toy. By the time he started Pre-Kindergarten, he
could count to 20 and knew all of his letters and colors."

Re: Little Tikes Bath Letters and Numbers

Please be advised that testing in 2008 by shows that they are toxic and contain high levels of mercury.

Thank you very much to the parent of the 6-year-old child
for your great ideas!

I have to say that I also use Signing Time videos with my
child, Matthew, who has ACC, and we love them! I borrowed two of the Baby Signing Time videos from the library so I could try them with Matthew. He really liked them. Then I borrowed several of the "Signing Time" videos. We liked them so much that we purchased some of his favorites!

Signing Time - read my personal blog post review

Other Sign Language resources
(we also use) are:

Baby Einstein My First Signs-See and Sign with Baby

Baby See 'N Sign (Volumes I and II)

My Smart Hands

The bath letters and numbers, the parent mentioned,
provides visual and (hands-on-touching) sensory input
for a child, allowing a multi-sensory learning experience.

Many kids with Agenesis of the Corpus Callosum learn
best through the use of multi-sensory teaching methods.
In other words, when they are learning something they
benefit from receiving input to 2 or more of their 5
senses: (See, Hear, Taste, Smell and Touch)

Thank you so much to the parent of a 6 year old child with ACC for your great ideas!

Have a learning tool that YOU want to share on the ACC blog?

Tell me all about it. I'd love to hear from you and so
would a lot of other people, too, who will be able to
see and read all about the learning tools and ideas
that you use with your child who has Agenesis of the
Corpus Callosum.

It is my hope that this section will become an expansive
collection of numerous learning tools (for families to
browse, see and read about) that will offer a variety of
new and inspiring ideas to help their young child, teenager
or grown child in many different areas--from academics, to
fine motor/large motor skills, to sensory issues, to
potty training--and anything else that comes to mind.

Do you have something that you would like to add?

Note: this new topic was inspired by Amanda, the mom of a child with ACC, at Blogging for Beau, where she shares some excellent ideas and fun "Learning Tools".

Tuesday, August 16, 2011

Minnesota NODCC Regional Gathering - Update!


Last month (July) in a previous blog post, you read about the August 13, 2011 NODCC Regional Gathering to be held in Minnesota for families who have a member with Agenesis of the Corpus Callosum.

That Regional Gathering took place last weekend. Want to have an inside view?

Well, the event was a huge success and thanks to Amanda Weichers (the NODCC Regional Leader for Iowa, Minnesota and Wisconsin), who wrote and shared all the details and goings on, in her recent article, you get to read and see all about it!

Thank you, Amanda, for allowing me to reprint your article here on the ACC blog for others to read.

"If you build it, they will come."

OK, so a cheesy title but hey it's an Iowa thing. For those who don't know, it's a quote from a movie made here in Iowa; Field of Dreams (Dyersville, IA) with Kevin Costner. It's an oldie but a goodie. Anyways.......That saying held true for me after a successful weekend in Minneapolis, Minnesota. This past weekend I organized an event for the NODCC; a regional gathering for families affected by ACC. I knew from information given to me by the NODCC, that Iowa didn't have many families affected by ACC. If they ARE out there, they just haven't connected with the NODCC and we aren't aware of them. It's a little lonely here in Iowa so I knew I would need to plan the event in a bigger area where more families with ACC were located if I expected to get anyone to attend. I ended up choosing Minneapolis, MN and what a great choice it was!

I arranged for our event to take place at the Radisson by the Mall of America. We were able to get a meeting room there which gave us the view of the huge indoor water park at the hotel; the Waterpark of America. We set the room up with some informational materials and a play area for the kids with some of Beau's toys. We had a buffet style lunch along with some goodies for dessert.

The last ingredient for a successful day was the people! Naturally on the day of our event a main roadway and exit to the hotel was closed, but people still managed to make it through the big city traffic jam. Including our family, we had a total of 11 families there to share in the fun afternoon. Everyone was so friendly and easy to talk to. We were all in the same boat that day. We were complete strangers with one thing in common; ACC. OK, make that two things; ACC and a huge love for our children! We're all in different stages of dealing with the ACC. Some are more willing to talk about it, others not so much; some have young children with ACC, others have grown children with ACC and so on. No matter what, I feel like some great strides were made this weekend. All of the families with the exception of ours, live within miles of each other in Minnesota and they never knew it. They never realized they had a support system right there! How rewarding to see people finding out that they have other families that "understand" so close by.

This is a group shot of all of the families that were in attendance this weekend. What a good looking group!

Topics of conversation included discussion about the IPAD 2 and using it as a teaching tool as well as a communication-like device. Above is a picture of Max's dad, Greg, with their service dog Zadie with Andy and Beau checking out the IPAD 2 that Max uses.

One of my favorite memories of the weekend has to be a friendship that I saw occurring between two young gals with ACC, Jessica, 13 years and Madeline, 12 years. My husband and I both looked at each other late into the day after observing the two girls and both recalled a memory from our trip to the national conference in San Francisco. There were 2 girls that were in their upper teens, that had met through the conferences of the NODCC and had become such great friends over the years. They had ACC in common and they had obviously built a strong relationship as a result. Andy and I both recalled how inseparable they seemed at the conference and how heart warming it was to see them together. We watched the very same thing happening this weekend and I hope their parents don't mind that I shared this story. I just know that as a parent of an ACC child I've heard so many stories about how hard it is for these kids to develop and maintain friendships. I worry so much about Beau not having friends or feeling isolated because he is "different". Watching these young ladies come out of their shells and have such a fun evening made the whole planning of the event completely worthwhile.

One of the other topics that came up (once again thanks to Max!) was the service dog. Max and his dog Zadie were a huge hit this weekend and it was great to see a service dog in action. We have thought quite often about the benefits of a service/seizure alert dog for Beau. Heaven knows it might allow me to get better sleep at night! Below is a great picture of Max, his dad Greg and Zadie.

After our time ended in the conference room, some of the families stuck around and played in the water park. It was another opportunity to talk, play and laugh. Beau loves water, so he had a great time. If you combine that with cute girls, he was in heaven. I think his face in the picture below says it all.

Beau with his new friends from the NODCC gathering.

The next morning we slept in a little bit, trying to recover from our busy day the day before. We decided to visit the Como Park Zoo on our way back home. We met up with the Prusi family at the zoo and enjoyed 2 hours of animal watching and talking about our two young sons with ACC.

Owen, Maren and Beau at the zoo.

Amanda (her husband-Andy) and their son, Beau

I can't thank the great ACC families of Minnesota enough for welcoming our Iowa family to the state. In my mind it was a huge success and each year can only get bigger and better. Next time, you Minnesotans may have to come south and visit the great state of Iowa!

This thing called ACC has brought all of us together; people who never would have met otherwise and for that I'm grateful. I've met some wonderful families not only at this event but when we were in California. Each time we do something like this I feel blessed and re-energized to do more to help those affected by intellectual disabilities.

I will end this with one of my favorite poems. It was written by Edna Massionilla and is titled Heaven's Very Special Child. After meeting such great parents it only seems fitting. The main thing I want to get across by using this poem is that God chooses great people to be the parents of special needs children. We were chosen for a reason and are so lucky.


A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'llknown as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,

by Edna Massionilla
December 1981
The Optomist- newsletter for PROUD
Parents Regional Outreach for Understanding Down's Inc.

© article and photos re-printed with permission from the author, Amanda.

view original story

Want to be a part of the next Iowa, Minnesota, Wisconsin
Regional Gatherings?

Contact, Amanda, your NODCC Regional Leader:

Leader: Amanda Weichers

Other NODCC Regional Leaders and Contact Info:

Leader: Vivian Avila

Leaders: Megan Mutti

Fred and Karen Petelle

Northern New England (ME, VT, MA & NH)
Leader: Theresa Walker
Summer Picnic Regional Gathering to be held on
Saturday, August 26, 2011 from 12:00 (Noon) till 3:00 pm.
Contact Theresa for complete details.

U.S.A. Regional Groups

Region 1
Maine, Vermont, Connecticut, New Hampshire, New York, Massachusetts, Rhode Island, New Jersey

Region 2
Pennsylvania, Ohio, Indiana, Michigan

Region 3
Delaware, Maryland, Washington DC, Virginia, West Virginia, Kentucky, Tennessee, North Carolina

Region 4
South Carolina, Georgia, Florida, Alabama, Mississippi, Louisiana

Region 5
Wisconsin, Minnesota, North Dakota, South Dakota

Region 6
Illinois, Iowa, Missouri, Nebraska, Kansas

Region 7
Arkansas, Oklahoma, Texas, New Mexico

Region 8
Colorado, Utah, Wyoming, Montana

Region 9
Idaho, Oregon, Washington, Alaska

Region 10
Arizona, Nevada, California, Hawaii

Do you want to become an NODCC Regional Leader in your region?

If you have an interest in becoming an NODCC Regional Community Leader for your regional area...

Please read more about the NODCC Family Partnership Programs (FPP) below:

Family Partnership Programs

Sign Up Here

NODCC e-mail:

NODCC stands for: National Organization for Disorders of the Corpus Callosum

Thursday, August 11, 2011

Learning Tools & Ideas #1

Agenesis Corpus Callosum
Parent Teaching Tip:

Parent of 2 1/2-year-old child with ACC, says:

"I saw your email in the ACC listserv and wanted to add something that has helped my daughter. One thing that has helped her learn her letters is the Leap Frog Refrigerator Magnets."

LeapFrog Fridge Phonics Magnetic Letter Set (uppercase)

LeapFrog Fridge Phonics Magnetic Letter Set (lowercase)

Note: there are a few older versions of this LeapFrog toy that look different

"I got it for her 2nd birthday and her speech person told me it wouldn't help her at all. But she loves the music and whenever I am in the kitchen cooking dinner she would play with it. She is just about 2 1/2 and now knows a lot of her letters and even goes in the kitchen, takes a letter off the fridge and brings it to me in another room and tells me the letter and what sounds it makes."

I asked the parent if her daughter uses it with uppercase or lowercase letters.

Parent's reply:

"We are using it with the uppercase letters."

Parent also said:

"Another thing that has helped her (I forgot until you mentioned the lowercase letters) is the Rock 'N Learn: Letter Sounds DVD. (We only focus on the beginning part with the letter sounds. The later part of the DVD goes into sentences and things that are a little advanced for her right now). It has both upper and lower case letters and says the letter, the sound and a word that begins with that letter with a picture. It also shows a mouth of a person saying the letter and sound."

click picture to enlarge

Read more about the DVD:

Surprisingly, I recognize and am very familiar with both of
these learning tools, mentioned by the parent. I have owned
both of these learning tools for several years and use them
with my own child, Matthew, who has complete Agenesis of
the Corpus Callosum.

My child LOVES watching the part in the video where the
person's mouth/lips move to say the letter, make the sound
of the letter and say the word of the object that begins
with that letter! This DVD has a lot of music and singing
in it, a big plus!

The LeapFrog Fridge Phonics toy also helps encourage fine motor skills, requiring a child to manipulate the letter, turn it to the correct position to put it in the toy, then take it back out.

We own the older version of the LeapFrog Fridge Phonics toy below.

Note: Please be aware that the magnetic alphabet letters are not interchangable between the old and new versions.

Put the letter "A" in...
Push the "A"...
And you hear it say and sing (in a kid voice) with music...
♪ ♫ ♪ ♫ ♪ ♫ ♪ ♫ ♪ ♫ ♪ ♫ ♪ ♫ ♪ ♫

A says "A"
A says "ah"
Every letter makes a sound
A says "A" and "ah"

And when you push the musical note, you hear the "ABC's" song (in a kid voice).

Lastly, the parent adds this info regarding Sensory Input:

"Some sensory related things that have helped her lately are the swing and the pool (which I found out just kind of by chance since it is summertime and we are outside doing those activities a lot more now)."

"Her speech has improved greatly just recently and it seems to be a lot better when she is on the swing or in the pool. Her OT and PT say it is all sensory related. The swing is because of the motion and how it relates to her vestibular system and the pool because of the added pressure the water has on her body."

OT = Occupational Therapist    PT = Physical Therapist

Thank you to the parent of a 2 1/2 year old child with ACC for all of your very informative input and ideas!

Have a learning tool that YOU want to share on the ACC blog?

Tell me all about it here. I'd love to hear from you and so
would a lot of other people, too, who will be able to
see and read all about the learning tools and ideas
that you use with your child who has Agenesis of the
Corpus Callosum.

It is my hope that this section will become a collection
of multiple learning tools (for families to browse, see and
read about) to find a variety of new and inspiring ideas to
help their young child, teenager or grown child in many
different areas--from academics, to fine motor/large motor
skills, to sensory issues, to potty training--and anything
else that comes to mind.

Note: this new topic was inspired by Amanda, the mom of a child with ACC, at Blogging for Beau, where she shares some excellent ideas and fun "Learning Tools".

Sunday, August 7, 2011

ACC and the Heart ♥ medical awareness

Does your child have Agenesis of the Corpus Callosum?

Do you have a loved one or family member with ACC?

This is a serious and very important message regarding
the heart!

20% of kids who have ACC have heart problems.

That means:

1 out of every 5 kids with ACC has a heart condition.

Read what Dr. Elliott Sherr, an expert on ACC, 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."

Who is Dr. Sherr?

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.

A few of the congenital heart conditions seen with ACC are:

Atrial Septal Defect (ASD)
Ventricular Septal Defect (VSD)
Coarctation of the Aorta
Tetralogy of Fallot
Hypoplastic Left Heart Syndrome (HLHS)

The fact that 20% of kids with ACC have a heart
condition is not limited to just babies or very young
children with ACC. It can affect older kids with ACC, too.

See for yourself. I came across the parent of a teenage child
with partial ACC who shares a very eye-opening story about
her daughter's heart.

Jody, parent of 15-year-old child, said:

"My 15 year old daughter, Jurie, has Partial Agenesis of the Corpus Callosum (P-ACC) with dilated lateral ventricles of the occipital and temproal horns. Due to the dilated lateral ventricles, she has hydrocephalus which fills the ventricles. She doesn't need a shunt because there is no extra pressure from the fluid. She has a lot of sensory issues with this condition, as well as, dyspraxia symptoms. I homeschool her because she had difficulty learning in a classroom full of kids.

I have four children, and Jurie is the onlly one on mine who has P-ACC. The doctor, however, ordered the genetic testing, and Jurie's was not genetic. Jurie was also born with an Atrial Septal Defect, which is a hole in the heart. We jjust found out that she had the hole less than two months ago [at 15 years of age] because no doctor had ever heard the heart murmur. This was because the hole was rather large, 19 mm, and the blood flow was large through the hole. She had the hole repaired on April 15 using a heart catheterization. She has strabismus/crossing of the eye and moderate scoliosis, also. She suffered from migraines for years, but by fixing the heart this has taken care of the migraines."

Jody's child was not diagnosed with partial ACC until she was 14 years old.

When a person is diagnosed with Agenesis of the Corpus
Callosum, they are at risk for having midline defects.
One of those possible midline defects includes the heart.

A person who has ACC (a congenital birth defect) is at
risk to possibly have a congenital heart defect.
Congenital means they are born with it.

My own child, Matthew, who is 17 years of age, who has
complete ACC, was sent to a Pediatric Cardiologist when
he was an infant, after he was diagnosed with ACC.

He had a comprehensive examination and he also had tests
done when he was a baby, which ruled out a heart defect.

Possible tests might include:


electrocardiogram (EKG)

The medical tests (for my child) were done right in the
doctor's office and I received the results of the tests

If my child, Matthew, had not been seen by a Pediatric
Cardiologist and had not been tested when he was a baby
to rule out a heart defect, I would definitely schedule
an appointment for my child now to have a comprehensive
heart evaluation by a Pediatric Cardiologist, even at
his age of 17 years old.

Please be aware that there are some congenital heart
defects (present at birth) that may remain unrecognized
until adulthood.

As a parent, myself, of a child with ACC, this is a message
from my ♥ heart to each one of you reading this who have a
child, a family member or a loved one who has Agenesis of the Corpus Callosum.

Please be advised the National Organization for Disorders of the Corpus Callosum (NODCC) website states:

"Twenty percent (20%) of patients with DCC have cardiac anomalies and therefore all DCC patients should have a careful cardiac evaluation."

DCC=Disorder of the Corpus Callosum

Note: Dr. Sherr's quote about ACC and heart defects is found at Dr. Sherr Talks about ACC

Click on "comments" below and read what others are saying: