Agenesis of Corpus Callosum Member Introductions


#101

My 1 year old son has ACC


#102

My brother’s wife is 22 weeks pregnant with their first child and they were told today the baby has ACC. Dr’s did see a cyst at 15 weeks on the baby’s brain and suspect that had something to do with it. However, the amnio shows it’s a normal healthy girl genetically. They had an MRI this afternoon. My questions are: Does anyone know what they are realistically facing? How will they know how severe or mild this will be? They are trying to decide if this would affect quality of life so much that they should consider terminating the pregnancy, is this something that someone else considered and now is thankful they did not do? Naturally they are in a state of shock and panic, so I am trying to gather as much information for them as possible. Thanks.


#103

I’m the mom of a wonderful 7 month old son with p-ACC as well as a large arachnoid cyst over the left hemisphere of his brain. We found out about these issues when I was 20 weeks pregnant with him.

He’s the greatest thing that has ever happened to me.


#104

Hi, I am the mother of a 10 yr old boy. Basically he has a thinner than normal splenium and white matter deficiency. What form of ACC does this qualify as?
Thanks,
T


#105

My 14 mo olf daughter was just diagnosed with ACC and I’d love to talk with other parents about what to expect.


#106

Hi I am Deb and my 2 month old son was just diagnosed as having p-ACC. As well as a whole host of other problems. Like his optic nerve and his kidneys as well. I was told he will be on medication for life for his kidneys alone (so far).


#107

Hello everyone. My name is Tracy and I am the mother to a 14 y/o who has C-ACC, seizure disorder, brachial plexus, Bushke-Ollendorf syndrome and newly some muscle issues as well as kidney problems. I have recently started to join up with some groups in hopes to be a help to anyone who is newly going through all of this. I hope my experience can benefit others.


#108

Hi Tracy. I am Vicki mom to Scott 6 years old. He has ACC. He was diagnosised with autism when he was about 3. Now they are trying to say he is other Health impaired instead of autism.
Just wondered how your son was when he was 6? Did he have his medical problems then?
He has no other medical issues other than sinus problems if he is off the sinus medicine probably allergies just havent wanted to put him through the tests.
Vicki

To: vickijo@hotmail.com> From: agenesiscc-cpt2215@lists.careplace.com> Subject: Re: [agenesiscc] Agenesis of Corpus Callosum Member Introductions> Date: Sun, 21 Oct 2007 22:24:16 -0400> >


#109

OHI is actually a more flexible label for school purposes than autism. Autistic behaviors and programming for them can be part of the IEP. It also assumes the child might actually have normal intellect. Actually some research at Iowa in the 90s indicated that a fair percentage of folk who had previously been labeled autistic actually had CC and cerebellar issues.

Jane In MN (Rafi’s MOM)

vicki7h agenesiscc-cpt2215@lists.careplace.com wrote:


#110

My son, Jesse, has P-ACC and it was discovered by way of an MRI when he was 3. He also has some autism but not enough according to the health care officials. They label him as “Otherwise health impaired” also. Somehow we need to bring an awareness of what this truly is and how it DOES effect them. I believe there is not enough general knowledge in the health care field. I appreciate the site that was sent in the ACC network newsletter.

I passed that along to friends and relatives. There was a program on the NY PBS channel about ACC. We all need to do our best to understand and educate our communities about ACC and P-ACC.


#111

Hi i discovered i had Complete Acc when i was 24 yrs old i am glad i found this group i am married and have a 5 yr old Daughter


#112

Hello
Thanks for sharing - I’m curious on what struggles you may have had growing
up? My son is 11 and has a thinning of the corpus callosum, along with
Sotos Syndrome…a lot of his struggles are behavior, attention, impulsivity
and more…

Thanks,

~ Deborah

-----Original Message-----
From: Winnie31508 [mailto:agenesiscc-cpt2215@lists.careplace.com]
Sent: Monday, April 28, 2008 4:43 PM
To: dpollom@cox.net
Subject: Re: [agenesiscc] Agenesis of Corpus Callosum Member Introductions


#113

Hi Dave,

Thank you for sharing your story about your daughter Alex, it sounds like
she is doing pretty well considering her condition. I am really happy to
hear that. Please feel free to share any other (if any) health problems,
diagnoses, tests, etc that Alex has had to go through weather it’s related
to AgCC or not. I enjoy learning about our precious little children.

I am the mother of a 9 month old baby girl, Brianna she was diagnosed with
AgCC at 5 1/2 months of age, so this is all pretty new for me and am trying
to do my best at learning as much as I can to help her as much as possible
and be her advocate. We live in Fullerton, Ca (Orange County).

This might be lengthy so bare with me…
Brianna however has had many other health conditions, it all started with
severe constipation, (doctors thought it was normal and didn’t do much for
this), then she started vomiting bile (stomach acid) violently, this is when
we took her to the hospital, she then started having what doctors call ALTE
episodes (apparent life threatening events). This is when the baby stops
breathing turns purple/black in the face and or the body and faints… their
first thought was “temper tantrums” this made me sooooooooo mad!!!
At this point they did a film test and found that she had intestine
mal-rotation “since birth”!!! This also made me mad because the first sign
that something was wrong was the severe constipation. So she had surgery
March 9th 2008 to correct this.

She continued to have these episodes so they did an EEG to test for seizure
activity and this came back within normal limits, next step was a CAT Scan
and this showed AgCC, so they did an MRI to confirm it… and yes my baby
was diagnosed with complete agenesis of the corpus callosum. This was just
the beginning.

We went home soon after she recovered from her surgery, after a 12 day stay
at the hospital.

But…these episodes continued…
She started sounding very congested and having a hard time breathing so we
the time came when we decided we where going to take her back into the
hospital and not let them discharge her until they told us what was causing
these episodes and we wouldn’t take “temper tantrums as a diagnose”.

They ran a series of studies and they threw a whole new diagnosis my way…
both central and obstructive apnea, dysphagia silent aspiration (this being
the root cause of her episodes). This was bad news for us and it seemed like
it was one thing after another and I couldn’t handle it anymore… this ment
that it is unsafe for her to have a bottle, she can no longer drink by mouth
because it aspirates into her lungs and puts her at risk for aspiration
pneumonia… so she got a g-tube/ feeding tube placed 4/11.

She also saw an infants optometrist and he said she is both near and far
sighted and has severe stigmatism… so she will need glasses when she turns
one, and may or may not need surgery to strengthen the muscle of her
wondering eye which is getting better so hopefully she wont need this.

I am not sure if you are aware of the Early Intervention Center in Orange
County it’s called The Regional Center of Orange County. They come and asses
your child and tell you if your child needs help in any area example motor
skills gross skills etc.

They evaluated my 9 month old at a 4-6 month development based on the States
charted expectancies. She is receiving child stimulation therapies through
this program, this program is COMPLETELY FREE for anyone in Orange County.
If you need the number let me know and I will find it for you.
They are also trying to help fund the other therapy that was suggested she
has. Vitalstim therapy this one is very expensive it’s to help with her
aspiration problem. We will see.

Other than this it seems like she is starting to recover from these last
months in the hospital, she is adjusting to being at home and is learning a
lot. She is a smiley baby, a bouncy baby, an extraordinarily happy baby. She
is putting weight on her legs is just starting to sit up but not for long
without support and is using her hands quite well now to pass toys to and
from her left and right had.

We are working with out daughter to do as much as we can for her as am sure
you are for your little girl.

Please share with me your life experience with Alex, I enjoy reading how
much AgCC varies…

Thank you for your time,

Araceli

-----Original Message-----
From: Dave B [mailto:agenesiscc-cpt2215@lists.careplace.com]
Sent: Thursday, June 05, 2008 12:12 PM
To: asandoval@shaxon.com
Subject: Re: [agenesiscc] Agenesis of Corpus Callosum Member Introductions


#114

Hi! welcome to the forum.

What is your daughter like now? Have you seen any differencees in her? I know that alot of us with ACC kids have come forth to tell our stories, but they are all different. It can range from serious problems, to late on the milestons, or even no issues at all. So what led to the diagnosis?

Connor’s Mom


#115

My daughter has had delays since about 6 mo of age. We noticed she wasn’t grabbing for objects or holding onto them. She didn’t start rolling from back to front until 11 mo. She still willnot hold a bottle or can’t feed herself. Still doesn’t crawl. Only does a little babbling but no b’s or d’s. Can’t pull to a standing position. She also has to get braces for her feet as they turn outward. We did a bunch of genetic testing and it all came back normal so we decided to do the MRI. As far as we know the ACC is all she has as all the chromosome tests have come back normal. She has always ate well and could hold her head up at 1 mo. This is such a shock to us as we were thinking more along the lines of CP.


#116

well, everyone will tell you different stories. There is no one profile for ACC.

My son was diagnosed in utero. we had an MRI when I was still pregnant. I was devastated. To me it was like my high risk doctor was just looking for something, and he wouldnt stop until he found it. When he did, It was about a month before he was born. I was a total and complete basket case for that month. I spent that month reading up on ACC. Trying to find out everything I could. I believe in some ways ignorance is bliss. I could have really enjoyed not knowing anything for that last month.

Anyway, so back to what I was saying every ACC child is different. You will meet people here who have lived their entire life and never knew they had ACC until their mid 30’s. And then there are others who, like my son, found out earlier. Most delays can be managed with some help from early intervention and therapy. From what I have read you can usually find therapy in most major cities.

So my kid was on time for most of his milestones. He is 15 months, and the only thing I have noticed is hes trying to talk but hes not really saying any words clearly. He says MAMA and DADA but he doesnt really use them in the proper context. So I think there might be some delay there. but hes a muscle boy, and hes running and climbing and into mischief. If you read other stories here, their child may not be walking but they are talking like crazy. So you see, every child is different. You will find that with your baby too.

I know you are shocked, its hard to swallow any disorder a doctor throws at you. Why my baby? how could this happen? I did everything right, etc etc. Its not your fault. But it happened. The best thing you can do is arm yourself with information, and prepare to do battle for your child. ACC isnt the end, its the beginning. There are alot of other very knowledgeable people here as well. This forum is part of the Yahoo forum. I would check that out as well, as I know people still use that over there as well.

Keep writing here, let me know how you are doing. Find a good Neurologist, and just absorb everything you can. Wikipedia has some great info on ACC. there are other sites too. hmm there was one I have a link for at work. when I get to work I will post some of the links that I have found that I thought were pretty good. Keep your chin up. With some good therapy and help from good doctors everything will work out.

Edit Here are the links I had at work I thought they were pretty interesting:

http://nobelprize.org/educational_games/medicine/split-brain/index.html

Shawn


#117

Hello, I live in Irvine (Orange County) Ca and it appears my daughter has AgCC. She was originally being diagnosed with MPS (a degenerative metabolic disorder) but after having a CT scan, X rays and other test it sounds like they are ruling that out. The CT scan did pick up that it appears she doesnt have a corpus callosum. Being that MPS is degenerative and life threatening I must say although it might sound weird that I was relieved to find out she doesnt have a corpus callosum. My daughter Alex is 13 months old and seems to be doing pretty well (although she does seems to catch every cold available). She is crawling, sitting up, pulls herself up with furniture and scoots allong the furniture. She also says mama dada and papa and has a great big smile! I am hoping to learn more about how everyone else with AgCC is doing.
Thanks
Dave


#118

Hi Dave,

Thanks for the response.
Yes an MRI is a must, an MRI is much more clear than a CAT Scan. Also
something to keep in mind is that a child with AgCC can sometimes have other
related/ unrelated brain abnormalities or mal-formalities, and can only be
seen with an MRI. Please do as much as you can to get Alex an MRI.
Brianna’s case is opposite her head is 1% smaller than normal for her body
size.
Also about Alex’s vision being good, keep in mind because she can track
objects near or far and respond to objects and movements does not mean her
vision is “clear” this is Brianna’s case. An excellent children’s
ophthalmologist at CHOC is Dr. Nankin ask for a referral for him.
I am really glad to hear she does not have a metabolic disorder.

You do not have to take my advice at all on this but from my personal
experience, neurologist at CHOC Dr. Armstrong is rude, and doesn’t listen to
a parents input. He did not help Brianna AT ALL!!! He is the one that kept
saying since day one that Brianna’s episodes where breath holding spells/
temper tantrum, once he found out that it was all this other stuff we NEVER
saw him again, not because we didn’t want to HE just didn’t do so on his own
(Embarrassed probably). Our daughter could have died if we would have
listened to him and took her home believing that there was nothing wrong
with Brianna and that it was all her temper… when in reality he didn’t
even care to do deep testing. Just something to keep in mind.
Dr. Ying Peng is a better option, also at CHOC.

If you want Alex to see a pulmonary a GREAT doctor at CHOC is Dr. Anchalee
Yuensgsrigul (You-sen-gral). 714-532-7983 She is awesome.

If for some reason you need to see a Gastroenterology at CHOC also another
GREAT doctor is Dr. Shaheen Idries, 714-289-4099, she is really good, she
was willing to do and re-do all kinds of tests on Brianna.

If for any reason Alex has to have a surgery, I HOPE NOT FROM THE BOTTOM OF
MY HEART, Brianna has had 2 and it’s so hard for a parent to go through this
with a child.
Brianna had two at CHOC one was Dr. Lam and the other one was Dr. Kavianian
714-361-4480, and I say Dr. Lam is better by faaaaaaaaaaaaaaaaaaaaar! He
listens, understands, and is very caring for his patients. I owe him
Brianna’s life, he did her LADD’s surgery for intestine mal rotation which
is a HUGE surgery.

HUGS to Alex!!!

Please keep in touch when you have any updates on Alex. I appreciate you
sharing this hard situation with a complete stranger. If you have any
questions or concerns regarding any of the procedures, tests, doctors at
CHOC give me a try I might have some advice that might help you guys we
where at CHOC from March 9 to April 23 and continue to see all these
physicians on a regular basis, and had many many tests done on our baby.

By the way have you guys (Alex, you, and your wife) been genetically tested?
We found out the root cause of all her abnormalities was a chromosome
in-balance inherited from my husband, her dad.
Geneteics, Dr. Zadeh 714-288-3500 it’s a block down from CHOC.

Best wishes,

Araceli and Family.

-----Original Message-----
From: Dave B [mailto:agenesiscc-cpt2215@lists.careplace.com]
Sent: Thursday, June 05, 2008 2:20 PM
To: asandoval@shaxon.com
Subject: Re: [agenesiscc] Agenesis of Corpus Callosum Member Introductions


#119

Araceli, thanks for the information. My wife is from Fullerton. At
this point we don’t know too much else besides that Alex has AgCC. We
went to a metabolic specialist yesterday at CHOC (for the MPS) diagnosis
and he confirmed that she didn’t have that. Alex’s pediatrician has
also referred her to see a Neurologist at CHOC but we just have to wait
for insurance to clear it and then schedule an appointment. My uncle is
a pediatric neurologist in Ohio and we sent him Alex’s CT scan. He
would really like her to have a MRI. Alex’s pediatrician has been
hesitant to ask for an MRI but we are hoping the neurologist will when
he sees her.

The metabolic specialist we saw yesterday did suggest that she go to a
Regional Center. Alex has also always been congested (constant runny
nose) so he also recommended that she see an ear nose and throat doctor.
He also recommended that she see an ophthalmologist. Her eye sight
seems to be fine but I guess they can look inside the brain/head through
the eyes.

Alex hasn’t really had any constipation (she did have a couple of times
when she was about 2-3 months when she didn’t go to the bathroom for a
week) but she does seem to be bloated a lot. She also seems to get sick
a lot. She has had two ear infections, hand foot and mouth disease and
croup. She hasn’t had any seizures so that is good.

Thanks for the email and I will email you back after we see the
neurologist to tell you how it went and what he recommended. Give Brie
a hug for us.
Dave

-----Original Message-----
From: BriesMommy [mailto:agenesiscc-cpt2215@lists.careplace.com]
Sent: Thursday, June 05, 2008 1:08 PM
To: Beal, David
Subject: Re: [agenesiscc] Agenesis of Corpus Callosum Member
Introductions


#120

One other thing I forgot to bring up. Alex head is a lot larger than normal. This is one of the reasons they did a CT scan. Her height and weight are at about the 35th percentile but her head has been growing much faster. I believe her head is now in the 80th percentile. Anyone else have any experience with this?