Scared

Agenesis of Corpus Callosum
#1

At my 18 week ultrasound I was told my son had a high side of normal fluid on his brain on one side 1.07 and normal is 1.0 - I have now had an MRI done and been told that one ventrical in his brain is 11 and the other ventrical is 12 - we have been told he has a partial corpus callosum and I am so scared -

I have a three year old son without ACC and I am just scared that my unborn son Logan will have many conditions that affect how he lives and if he can live a “normal life” - I have to think of my three year old at this point now as well -

Any help or advice for this scared mom?
Jenn

#2

Jenn,

Almost every mom that is in your place had similar feelings when they found
out about their child. I remember my main emotions being fear and worry.
You are not alone. The Internet groups have been the best place for
information for our family, but there is a better group in my opinion. If
you google ACC and University of Maine you will find a private and more
active group. Look for family resources or networking. There you should
get a lot of info and fantastic support.

ACC varies with each child. It is hard to tell ahead of time what your
child will be like. Some kids have no issues (the radiologist that
diagnosed my son had C-ACC) others are more profoundly effected. My son is
in 3rd grade and has speech delays and problems with reading, but he also
won an art contest last year and beat out several hundred “normal” kids. My
friends daughter is a great writer, but struggles in math. She is currently
in college and majoring in writing. There is hope.

Here are somethings that I have learned along the way. Fish oil is great
for the brain. I wish I would have done it earlier. Contact your state for
their local in home therapy. Most states will provide it for free or a low
cost. That too I wish I would have started at birth. Music is fantastic
for the CC. Studies have shown that kids who play music have a larger CC.
Classical music is great.

As far as your other son goes. He is quiet lucky. He will have a personal
opportunity to learn compassion. He may also learn not to take things for
granted. Have hm help you in the care for your ACC child. He will learn so
much that way and take ownership and pride in his brother.

Feel free to call. I am ok with crying :slight_smile:

Tama
307-670-3746
Mom to Aaron C-ACC age 9 and 3 more kiddos

#3

None of us know what will happen in the future. You can let your fears immobilize you or let go and let G-d. I recommend the latter, you can’t help anyone by giving in to your fear.\

Jane in MN
(Mom to 5 kids on the Autism spectrum, one with known Callosal issues and many others, and on the Spectrum myself.)

#4

As an adult with ACC, it is a natural feeling to be scared…even children without disabilities.

The spectrum with ACC is that the disability varies with ACC children. So, how ACC will affect your child cannot be determined by a simple diagnosis.

Prepare yourself and your child for each day.

The thing is that raising children is not a piece of cake. It does not matter if the child has a disability or not.

It is okay to cry. It is okay to be angry. It is okay to be scared. Everyone needs quiet times to deal with stressful situations.

Crying will not make you a bad parent.
Feeling scared will not make you a bad parent.

Most importantly, you are NOT alone. I will repeat it: YOU ARE NOT ALONE!

Ask questions…mention any concerns…

Take care
–Kyle, 36, C-ACC

#5

I think what is bugging me right now is we don’t know the percentage of the absence - and we have so much more discussing and testing to do.

#6

My daughter has c-acc. She is almost 2 and has absolutely no developmental or physical “delays” and appears “normal” by all kinds of tests - EEG, speech pathology, physical therapy assessments, pediatrician appts., well baby checkups, etc.

I worried so much during my pregnancy, and so much during the first few months of her life. All of the info. on the web was very discouraging. I hope my story gives you a bit of hope.

Jen

#7

It does and thanks for sharing.

Right now I need all the hope I can get…I am so scared.

#8

I know (that you are scared) - that is normal, and I am still scared (sometimes) about my daughter and how she will develop - mostly I am afraid of other kids being mean to her.

Your sons ventricals are probably a bit big because they are taking up the space where the CC should be. If the US/MRI did not detect any blockages - you can probably rule out hydrochephalus (but this is my un-expert opinion, I am not a MD). This was the case with my little girl - we were originally diagnosed with hydrocephalus, until an MRI determined it was A-CC. Numerous (weekly) US showed that her ventriculomegaly was stable.

If the only abnormality found was P-CC it is probably not a big deal (although that is relative of course). Like I mentioned before, websites were not very encouraging, but I did manage to find one or two that stated that if P-CC or A-CC was the only finding, then chances are your child will be “normal”. Other people on this board have mentioned that A-CC can occur across a spectrum - this is certainly true, but I also take hope in what one parent pointed out - all people’s strengths vary, and some are strong at one skill and weak in another (who isn’t!). So to me, the fact that my daughter might struggle with math or reading, or be really lousy at art, or lack some social skills, isn’t “abnormal” at all.

#9

Jenn,

My son is now three years old and was diagnosed at about the same time with complete agenesis. We went through many of the emotions you are going through now!

What you will find is that it is not usually the agenesis that causes the problems it the associated anomoly’s that cause the problems. If the agenesis is isolated the outcome tends to be better.

My son is now three and the only issue’s he’s had is some small gross motor which he has been able to overcome with a little PT. He is a normal little boy and enjoys going to Pre-School with all his friends!

The toughest part about recieving this diagnosis is the unknown, but I can’t imagine what my life would be like without my little boy today!

If I can answer any questions please let me know!

#10

thanks again for writing… right now everything else has come back clear. so I am hopeful I am just so worried. I had a stillbirth in 2003 at 27 weeks gestation, a little boy who spend 6 weeks in NICU for other reasons and now this - I never get the easy route

#11

I’m a lurker, but felt I had to write. Everyone’s emails are so
uplifting. I think we all can gain more strength from each other.
Thank you.

My son has C-ACC and is 3 1/2. He goes to a pre-K for Autism and
thrives. Absolutely THRIVES in this environment. Of all the
troubles that can be overwhelming, one of the pros is that we
actually have a diagnosis w/ pictures. Some of the students in my
son’s classes have much, much worse disabilities and they poor
families & their docs have NO CLUE what is going on. They go from
test to test. Medical procedure to early intervention to out right
denial and prayer. Anything for an answer and often, no answer
still. They have to fight so much harder than I do for the same
services and I am amazed by the temerity and persistence they
demonstrate.

I am a better parent because my son has ACC. I know it. If only
because I’ve been trained by PT, OT, Speech, ABA and top notch
pediatric neurological pros. And groups like this.

Be strong. Be pro-active. Enjoy the good things. Email when you
need to vent - I’m a lurker, but am listening and caring and dealing
just like you.
Take care,
Jennifer

On Apr 14, 2008, at 4:31 PM, aquaryan wrote:

#12

Tama -

Can you tell me more about the fish oil?

Thanks
Theresa - Mom to Serena P-ACC - age 5

Mom to Aaron

#13

Fish oil helps with brain function, my son started talking quite soon after I put him on fish oil and flax oil Lion’s mane mushroom is another supplement for brain function and nerve growth. It seems to help Rafi be a little less scattered.

Jane in MN

TheresaH1973 agenesiscc-cpt8560@lists.careplace.com wrote:

#14

I’m sorry…but is there a particular type of fish oil your talking about here? What did you give your son? Do you have a web-site or anything?

Thanks again
Theresa

rafismom agenesiscc-cpt8560@lists.careplace.com wrote:

#15

Nordic Naturals has flavored fish oil that is not fishy in a number of formulations, doses etc. We use the children’s strawberry flavor.

TheresaH1973 agenesiscc-cpt8560@lists.careplace.com wrote:

#16

When my brothers and I were younger, my mom gave us cod liver oil every single day. I think it is what helped a lot of my brain issues.

#17

Hi,

I think I must have deleted your response in terms of
the brand of fish oil and flax oil you have been
giving your child. If possible, could you please let
me know what’s the best brand is out there.

For everyone in mail list -My son’s second IEP meeting
is next week. In the first IEP, the school proposed
to do testing on him which we ( going by our lawyer’s
order) agreed. However, when prior testing was done
by the school system, the school had stated that my
son has MR. I don’t know if this varies from state to
state, but here in Maryland as soon as the school
diagnosed a child with MR, it’s difficult to get
services (services get limited - thinking that the
child will not be able to function later). When they
did the MRI the doctors told me that he has P-ACC and
hypotonia. My question is - is there a diagnosis that
falls under P-ACC/hypotonia or does it varies as to
where the child has a diagnosis of MR, Autism, etc.?
FYI - My son is also non-verbal.

Thanks much.

— rafismom

#18

I have used any number of flax oil brands, all pretty much the same and dose is 1 Tbsp/day/100 lbs of kid. Fish oil is NOrdic Naturals strawberrry flavor. I will bew off line most of the nexty 5 days between getting ready for Passover and Passover.

Jane

melnid agenesiscc-cpt8560@lists.careplace.com wrote: