Agenesis of the Corpus Callosum website

[acc_angelsaroundtheworld]

Hi Everyone,

I am the mom of a boy who has complete ACC. He was diagnosed by CT scan when he was four months old. He is 15 years old now.

More information about Agenesis of the Corpus Callosum can be found at the website below:

http://members.tripod.com/~scenicbeauty/AngelsAroundTheWorld.html

I am always interested in e-mailing with other parents
who have a child with ACC or a corpus callosum disorder or anyone who has an interest in ACC so please feel free to e-mail me at: hope@aracnet.com

Sandie

[T. J.]

I have partial ACC.

T. J.

[acc_angelsaroundtheworld]

Hi T. J.

Thank you for your note.

I am unsure if you are an adult with partial ACC or a student still in school perhaps.

If you are an adult I am wondering if you are aware that
there are other adults with ACC involved in an e-mail support group. If you're interested you can e-mail me if you like.

hope@aracnet.com

I would like to hear more from you if you may ever like to share anything else. Thank you. :)

Sandie *Mom to 15 year old Matthew with complete ACC*

I have partial ACC.

T. J.

[T. J.]

I am an adult (26). Finished with high school in 2004.

T. J.

[acc_angelsaroundtheworld]

Hi T. J.

That is so great that you finished high school! :)

Did you have a favorite thing you liked and did well at
in school?

Did you have anything that was hard for you to do in school?

Thank you for your note.

Sandie *Matthew's Mom who has complete ACC*

I am an adult (26). Finished with high school in 2004.

T. J.

[T. J.]

My teachers always told me for special ed. kids (as I was) completing your IEP was "graduating" high school but I never belived them. In 2004, I turned 21 right before the 1st sememster was over. So, they got rid of me.

Did you have a favorite thing you liked and did well at
in school? I loved sign language class, it was my favorite (even though I have vision issues)! I got an A (true "A" not an equivelant)! I could ask for letter grades or pass/fail in any of my classes. My sign language class was the only one I let the teacher use a letter grade for. I am dyscalculic (kind of like math dyslexia), so math was very hard for me. I never passed regular math classes beyone pre-algebra. But I excelled in special education in all areas!

T. J.

[CJVK]

I have acc, did not fing out until gr.10. The diagnosis answered alot of questions that dr's couldn't answer when I was little. ~ CJVK

[LIZARD]

I have acc, did not fing out until gr.10. The diagnosis answered alot of questions that dr's couldn't answer when I was little. ~ CJVK

I hope you don't mind my asking...how old are you? It seems that ACC/P-ACC isn't often discovered unless there are serious deficits or multiple conditions, such as ACC/P-ACC with hydrocephalus or CP. Anyone else think this? Is it just in "older" patients that this is the case?


LIZARD, always learning....:o :rolleyes:

[T. J.]

Could be the case Lizard. I didn't find out I had it until a regular yearly CT scan and it was spoted then. That was a few years ago (I am 26 now).

T. J.

[acc_angelsaroundtheworld]

T. J.

Thank you SO much for sharing that information with me. :)

Like you, my son was also in special ed on an IEP when he was in school. I removed him from public school his 8th grade year and am homeschooling him now.

Sign Language is such a wonderful skill. It is great that you enjoy it so much and that you received a real A in sign language in school. Good for you! :) I was told that my son would not get a real diploma while in special ed on an IEP with a modified curriculum but even so, doing your best, learning and making progress is fantastic!

I am doing sign language with my son now. Since I started homeschooling him he showed an interest in signing so we are both learning through DVDs and he is doing really well.

I was reading some of your other postings about how you used colored overlays to help with reading and columns in math. I have heard of that before and I also found out from another parent who has a child with ACC that it helped that child too.

Sandie *Mom to 15 year old Matthew with complete ACC*

My teachers always told me for special ed. kids (as I was) completing your IEP was "graduating" high school but I never belived them. In 2004, I turned 21 right before the 1st sememster was over. So, they got rid of me.

Did you have a favorite thing you liked and did well at
in school? I loved sign language class, it was my favorite (even though I have vision issues)! I got an A (true "A" not an equivelant)! I could ask for letter grades or pass/fail in any of my classes. My sign language class was the only one I let the teacher use a letter grade for. I am dyscalculic (kind of like math dyslexia), so math was very hard for me. I never passed regular math classes beyone pre-algebra. But I excelled in special education in all areas!

T. J.

[T. J.]

I didn't get a "real" diploma either! That's why I don't feel I really graduated from high school. Everybody says it was real but it still even now doesn't feel real. The modified diploma doesn't mean much to me.

T. J.

[acc_angelsaroundtheworld]

Lizard,

It is my understanding from my own experience and what I have learned about my son's ACC and from his medical doctors and specialists and from talking e-mailing with other parents who have kids with ACC or p-ACC and with adults who have ACC that if there are no serious symptoms ACC can very well go undiagnosed.

In fact, many adults have not been diagnosed with ACC until somewhere in their 20's on up to their 40s and 50s. Some of them are diagnosed due to having severe headaches and sometimes depression so an MRI is done and that is how it is discovered. Many of those adults with ACC report a difficult time in school with learning and knew that they had challenges and struggled with school but it was not recognized or severe enough to warrant a medical work-up.
Some adults and even kids have found out completely by accident due to bumping their head hard enough to warrant a CT scan or MRI and then ACC is discovered completely by accident.

So, it is not typical for a child or adult to be tested via an MRI or CT scan unless they are having some fairly serious medical issue and an MRI and CT scan are the best ways to detect and diagnose agenesis of the corpus callosum or a corpus callosum disorder. The corpus callosum can be completely missing, partially missing or a person can have a thin corpus callosum (smaller than usual and thinner).

Sandie *Mom to 15 year old Matthew with complete ACC*

I hope you don't mind my asking...how old are you? It seems that ACC/P-ACC isn't often discovered unless there are serious deficits or multiple conditions, such as ACC/P-ACC with hydrocephalus or CP. Anyone else think this? Is it just in "older" patients that this is the case?


LIZARD, always learning....:o :rolleyes:

[acc_angelsaroundtheworld]

Hi CJVK,

I am so glad for you that you were finally able to receive a diagnosis of ACC so that you were able to know why some of the things that were going on with you were happening when you were little. I'm sure it must have been very frustrating to not get answers from your doctors when you were little but to know that something didn't seem quite right.

I am curious what happened that caused you to be able to get a diagnosis of ACC in 10th grade if you are comfortable sharing this type of information.

Sandie *Mom to 15 year old Matthew with complete ACC*


I have acc, did not fing out until gr.10. The diagnosis answered alot of questions that dr's couldn't answer when I was little. ~ CJVK

[CJVK]

I hope you don't mind my asking...how old are you? It seems that ACC/P-ACC isn't often discovered unless there are serious deficits or multiple conditions, such as ACC/P-ACC with hydrocephalus or CP. Anyone else think this? Is it just in "older" patients that this is the case?

LIZARD, always learning....:o :rolleyes:

You gotta point there Lizard. I am 18 years old just finished my last year of high school, I was diagnosed when I was 16 after being in the hospital due to complications form strep. I have been IEP'd since pre-shool with a mild intellectual disability. Also, I was born with a congenital heart defect and am hearing impaired.

[CJVK]

Hi CJVK,

I am so glad for you that you were finally able to receive a diagnosis of ACC so that you were able to know why some of the things that were going on with you were happening when you were little. I'm sure it must have been very frustrating to not get answers from your doctors when you were little but to know that something didn't seem quite right.

I am curious what happened that caused you to be able to get a diagnosis of ACC in 10th grade if you are comfortable sharing this type of information.

Sandie *Mom to 15 year old Matthew with complete ACC*
Hi Sandie, as I told Lizard it was due to complications of strep-throat. However, my answers they vague. The doctor I had in the hospital would not release me until I made an appointment with the neurologist who was prescribing my meds for my migrains. All the neurologist told me and I quote "There is nothing to worry about it doesn't affect you." I was a little shocked by that response and was speechless. She didn't even aknowledge the fact that I have an LD or that I was born with a midline defect After this incident I decided to do some research on the net,this is where the majority of my knowledge comes from.

[LIZARD]

Hi Sandie, as I told Lizard it was due to complications of strep-throat. However, my answers they vague. The doctor I had in the hospital would not release me until I made an appointment with the neurologist who was prescribing my meds for my migrains. All the neurologist told me and I quote "There is nothing to worry about it doesn't affect you." I was a little shocked by that response and was speechless. She didn't even aknowledge the fact that I have an LD or that I was born with a midline defect After this incident I decided to do some research on the net,this is where the majority of my knowledge comes from.

O...M...G...Please DO NOT get me started on neurologists and their idiocy over brain structural issues!!!!!!! "It doesn't affect you"????????!!!!!!!!!! :mad: Who is this &*%$#$%$ moron so I can hunt her down and strangle her SLOWLY AND WITH PAIN?????????!!!!!!!!!!

Okay...breathing now...:eek: :o Trust me when I tell you I made the same near-fatal mistake myself at not much older than you (you're 16?? WOW...), and I will NEVER, EVER, EVER see one again, even with a lifelong history of epilepsy!!!! How sad that we so often have to learn the hard way that ONLY a neurosurgeon has a clue about such things. I'm just glad you learned early in life.

*hug *hug *hug

LIZARD :(

[CJVK]

Actually Lizard I am 18 Was Diagnosed at 16.

[acc_angelsaroundtheworld]

Hi CJVK,

Thank you for your note and for sharing.

You are not alone in being given information like the doctor in the hospital gave you after you were diagnosed with ACC. It is very sad that some doctors are unaware or perhaps don't take the time to understand and research corpus callosum disorders so they can better help their patients who are diagnosed with ACC.

Some parents who have a brand new baby diagnosed with ACC are not given any other information than what you were told. Some parents are not even told about their child's ACC diagnosis and they find out several years down the road when they request copies of medical reports. This is definitely not the case with all doctors though and many people are given much more information about ACC once they are diagnosed and are then sent to any specialists that they may need to see.

I'm so sorry that you were not given more information and that you were told that ACC doesn't affect you. I truly hope that more doctors will become better educated about corpus callosum disorders so that they can inform their patients who have ACC.

I'm very glad that you took it upon yourself to do your own research about ACC. :)

Sandie *Mom to 15 year old Matthew with complete ACC*

Hi Sandie, as I told Lizard it was due to complications of strep-throat. However, my answers they vague. The doctor I had in the hospital would not release me until I made an appointment with the neurologist who was prescribing my meds for my migrains. All the neurologist told me and I quote "There is nothing to worry about it doesn't affect you." I was a little shocked by that response and was speechless. She didn't even aknowledge the fact that I have an LD or that I was born with a midline defect After this incident I decided to do some research on the net,this is where the majority of my knowledge comes from.

[CJVK]

I didn't get a "real" diploma either! That's why I don't feel I really graduated from high school. Everybody says it was real but it still even now doesn't feel real. The modified diploma doesn't mean much to me.

T. J.

Great job T.J. an :D A :D in sign language!!!!!! Though I am hearing impaired, I did not get hearing aids until gr.8 and did not recieve support from an HrRes.Teacher until last year. I have been trying for years to teach myself :p ASL...
I know what you mean by you didn't get a real diploma.... I got a modified diploma in gr.8. When I went to high school the only reason I did not get a modifed diploma was because I switched school boards for a semester to live with my aunt. When I was there I look the Ontario Literacy test that is mandatory for graduation. When I moved back all my SERTS thought I was joking:rolleyes:...

My parents fought to keep me out of locally developed and life-skills classes because they wanted me to have more options. Though I get high 60's - low 70's in school, I am glad my parents fought to keep me mainstreamed.

[CJVK]

I find that in Canada there is very little known about ACC.... Most of the sites that I found and organizations were form the USA or UK....

[CJVK]

Thanks Sandie, sometimes I get so frustrated about this incedent... that my Mom wishes I was never told at that age and by that doctor. I even asked my friend to see if her doctor knew anything about ACC all her neurologist siad was to look it up online...

[LIZARD]

Actually Lizard I am 18 Was Diagnosed at 16.

It's just not my day...:rolleyes: :o Sorry about that. So you're my daughter's age. When you get to be as old as I am, there's really no diff between them. :D ;)

Thanks for correcting me.

LIZARD :)

[CJVK]

lol, it's okay... When ur thirteen year old sister is two inches taller than you, people saying I'm sixteen sounds a little better than eighteen...

[KathiDG]

Could be the case Lizard. I didn't find out I had it until a regular yearly CT scan and it was spoted then. That was a few years ago (I am 26 now).

T. J.

T. J.,

I can relate...I've recently gone in to be evaluated for seizures and had a CT done here locally (my neurosurgeon is 45 min away from where I live). I went to get a copy of the report from that AND an EEG I had done also. The CT report said that there was evidence of Agenesis of the Corpus Collosum...so if I hadn't gotten that report yesterday, I'd never know it....

All I've known is that I've got congenital hydrocephalus and been shunted since I was 2 days old. Nothing more....quite interesting find! I just turned *gulp* 32 last month....lol

Needless to say, I'll be frequenting the ACC board as well as the Hydro board now...lol

Hugs to all...and THANKS LIZ!

Kathi

[LIZARD]

All I've known is that I've got congenital hydrocephalus and been shunted since I was 2 days old. Nothing more....quite interesting find! I just turned *gulp* 32 last month....lol

Needless to say, I'll be frequenting the ACC board as well as the Hydro board now...lol

Hugs to all...and THANKS LIZ!

Kathi

Well, I'm <GULP!> 43 in another 4 1/2 months, so you're just a baby! :p :D

You're welcome, hon'. :) It's great to have you here. :)

*hug

LIZARD :)

[hblank89]

Does anyone have Agensis of the Corpus Callosum? My CT scans and MRIs say I do. I was just wondering if other people with hydrocephalus has it.

I have obstructive non-communicating hydrocephalus.

Haylea

PS. I was wondering what it means? I have heard it means the two hemispheres of the brain do not connect a certain way???? I honestly do not know... I recently found out the information from a CT or MRI in 2006 when I picked up copies of my previous scans in 2008.

[T. J.]

Yes, I have Parcial ACC and Hydrocephalus! Learning Disabilties too among other things!

T. J.

[LIZARD]

Welcome, Haylea! :)

ACC means you're missing the strip of nerve fibers that connect the two hemispheres of the brain, or that it's underdeveloped. It's not uncommon with hydro, although (as far as I know) I don't have it. It can result in very mild to extremely severe cognitive effects.

LIZARD :)

Does anyone have Agensis of the Corpus Callosum? My CT scans and MRIs say I do. I was just wondering if other people with hydrocephalus has it.

I have obstructive non-communicating hydrocephalus.

Haylea

PS. I was wondering what it means? I have heard it means the two hemispheres of the brain do not connect a certain way???? I honestly do not know... I recently found out the information from a CT or MRI in 2006 when I picked up copies of my previous scans in 2008.

[acc_angelsaroundtheworld]

Does anyone have Agensis of the Corpus Callosum? My CT scans and MRIs say I do. I was just wondering if other people with hydrocephalus has it.

I have obstructive non-communicating hydrocephalus.

Haylea

PS. I was wondering what it means? I have heard it means the two hemispheres of the brain do not connect a certain way???? I honestly do not know... I recently found out the information from a CT or MRI in 2006 when I picked up copies of my previous scans in 2008.

Haylea,

I am the mom to a boy who was born missing his entire corpus callosum.

It concerns me greatly that the way you discovered that you have agenesis of the corpus callosum (ACC) is through picking up a copy of your medical reports.

Your doctor at no time gave you the diagnosis or explained anything about ACC?

It is so disturbing to me that a professional in the medical field who has an obligation to inform and treat their patients would make such a blatant mistake of deciding that the patient doesn't need to know that they are missing a section of their brain.

I am so sorry that you found out the way you did and that you were not given the courtesy of being able to hear it from a medical doctor who was able to give you information and answer your questions about agenesis of the corpus callosum.

In case you are interested there is an annual disorders of the corpus callosum conference put on each year by the National Organization for Disorders of the Corpus Callosum (NODCC). The Conference changes places each year throughout different states in the US. This year the Conference will be held in Indianapolis, Indiana on August 14, 15 and 16, 2009 at the Marriott East Hotel. You can find more information about the Conference at the links below.

http://www.nodcc2.org/nodcc2/index.php?option=com_content&task=view&id=102&Itemid=202

https://www.nodcc2.org/nodcc2/index.php?option=com_chronocontact&chronoformname=DCC_Conference_Reservation&Itemid=125

There are so many people who attend this Conference who have agenesis of the corpus callosum or partial ACC...both parents with their child who has ACC, teens who have ACC and adults who have ACC.

Please e-mail me anytime or leave a note here because I am happy to share the things I have learned about ACC.

Sandie

[acc_angelsaroundtheworld]

I cannot easily let go of the fact that so many patients and parents of little ones are NOT told the diagnosis of agenesis of the corpus callosum or a corpus callosum disorder when it is right there in a medical report and the doctor is quite aware.

I realize that there are many wonderful doctors who treat their patients with respect and inform them of both their diagnosis and findings on an MRI and CT scan as well as help educate and get them to see any appropriate specialists that the patient may need to see. I am very thankful for doctors like this. My own child with ACC has wonderful doctors.

But there are also doctors who for whatever reason are fully aware that their patient is missing the corpus callosum or partially missing the corpus callosum and they are failing to inform them. They are also failing to research and understand what agenesis of the corpus callosum is and then inform their patients. This is NOT right and should not be happening!

If I were each one of you adults who received the diagnosis through medical reports when you picked them up or through a doctor telling you that you're missing you're corpus callosum but don't worry...it doesn't affect you...I would get together information about ACC and either give it directly to the physician or send it to the doctor and express that you deserve to know the exact findings and be given accurate information.

I truly am beside myself that some patients are NOT being told that the findings of an MRI or CT scan showed agenesis of the corpus callosum. This is absolute negligence and should not be tolerated or be acceptable behavior in the medical practice!

I know an adult, Lynnea, who has ACC. She was only recently diagnosed a few years ago. She is doing all she can through ACCAwareness to create awareness of ACC and corpus callosum disorders. In fact, she has a Petition to generate media attention for agenesis of the corpus callosum that she is asking people to sign. I will leave the link below and would encourage you to read and sign the Petition to help further generate awareness of ACC and get it out in the open in the media.

http://www.petitiononline.com/ACCA2009/petition.html

Lynnea's Story-An Adult with ACC:
http://agenesiscorpuscallosum.blogspot.com/2009/06/meet-lynnea-adult-with-acc.html

Sandie *Mom to 15 year old Matthew with complete ACC*

[KathiDG]

Sandie,

I just found out about my ACC thru picking up a medical report CT scan. I've had hydrocephalus (shunted) since I was born. No mention was made to me or my parents about ACC. I'm 32 now.

The reason for my GETTING this CT scan was for possible seizure activity. I have some sort of abnormality in the left temporal region where my brain gets slower than the rest of it for periods of time. And then I read that ACC can cause seizures.....hmmm....

The question that's on my mind right now regarding all this: my local Dept of Voc Rehab is in the process of helping me find employment (VERY SLOW GOING!), and we all think it would be beneficial that I have my Driver's License.

Is it possible to HAVE ACC AND a Driver's License? I mean, as long as we find out what's going on regarding these seizure episodes I'm having? I know the seizures have to be controlled in order for me to get the license in that aspect...but does ACC in itself prevent people from driving? I don't want to get my hopes up if it's not even a possibility now...

Thanks for any input you have! I appreciate it sooo much.

I checked out Lynnea's site as well...very cool. It explains why I have such a love for music...been like that since I was very young. I remember singing to and from school on the "short bus" every day.....loved choir....

[acc_angelsaroundtheworld]

Sandie,

I just found out about my ACC thru picking up a medical report CT scan. I've had hydrocephalus (shunted) since I was born. No mention was made to me or my parents about ACC. I'm 32 now.

The reason for my GETTING this CT scan was for possible seizure activity. I have some sort of abnormality in the left temporal region where my brain gets slower than the rest of it for periods of time. And then I read that ACC can cause seizures.....hmmm....

The question that's on my mind right now regarding all this: my local Dept of Voc Rehab is in the process of helping me find employment (VERY SLOW GOING!), and we all think it would be beneficial that I have my Driver's License.

Is it possible to HAVE ACC AND a Driver's License? I mean, as long as we find out what's going on regarding these seizure episodes I'm having? I know the seizures have to be controlled in order for me to get the license in that aspect...but does ACC in itself prevent people from driving? I don't want to get my hopes up if it's not even a possibility now...

Thanks for any input you have! I appreciate it sooo much.

I checked out Lynnea's site as well...very cool. It explains why I have such a love for music...been like that since I was very young. I remember singing to and from school on the "short bus" every day.....loved choir....

Hi Kathi,

Thank you for your note.

Again, I am very sorry that neither you or your parents were informed about the diagnosis of ACC and that you found out by accident when picking up medical reports.

I can only offer you the information I have learned from dealing with my own son's agenesis of the corpus callosum and from what I have learned through dealing with his medical doctors.

When someone is diagnosed with agenesis of the corpus callosum or partial ACC they are at risk for having seizures. Because people with ACC have a brain anomaly (a missing corpus callosum) there is always a risk for having a seizure. A normal EEG does not mean that the person won't ever have a seizure. They are always at risk for seizures. It also doesn't mean that everyone who has ACC has seizures. Many people who have ACC don't have seizures.

I am curious why you were sent for an EEG? Were you already having possible seizure episodes?

I am unsure if you were diagnosed with a seizure disorder. It appears that you might have been diagnosed with a seizure disorder from what you wrote about "some sort of abnormality in the left temporal region". Are you taking any seizure medication?

Have you ever had your drivers license in the past or taken the drivers test if I may ask?

Yes, it is definitely possible to have ACC and have a drivers license. Some people with ACC are able to drive. Some people with ACC are not able to drive though. Lynnea, the adult with ACC, who's website you looked at, doesn't drive.

The reasons for not being able to drive when you have ACC vary. Some people with ACC cannot easily judge distance and some struggle with depth perception.

It is the same for learning to ride a bike when you have ACC. Some people can learn to ride a two wheel bike and others struggle immensely with learning to ride a two wheel bike. Lynnea, the adult with ACC, also is not able to ride a two wheel bike.

It is also compared to how some people with ACC cannot play sports like baseball because it would be too dangerous for them to try to judge a ball coming at them. They could get hurt very badly.

There is no known prognosis for how ACC will affect a person. ACC has a very broad range of effects from mild learning disabilities to severe mental and physical delays and challenges. ACC can also be seen with many other medical conditions such as genetic syndromes, chromosome anomalies, metabolic disorders, seizures, eye problems, hearing impairment, midline defects, etc.

I am happy to share what I have learned about ACC with you so please feel free to leave a note anytime or e-mail me.

Sandie *Mom to 15 year old Matthew with complete ACC*

[KathiDG]

Sandie -

Thank you for your response. Yes, I am having some sort of seizure activity, but the doctors are trying to figure out "if they ARE actually seizures". Just in the last week or 2 I've had a new symptom come up with them. They used to just start out where I would feel very flush, then my mouth would fill with warm/hot saliva and I'd feel dizzy...my vision goes and my hearing as well. It is like a staring type spell...but last weekend, along with the episodes of that, I've begun vomiting at the end and then the seizure or whatever it is passes. Last Thursday - Friday (I had those vomiting seizures the week before that), I had a 24 hour ambulatory EEG, but NO seizure episodes during that....frustrating! I'm calling the neurologist today to let him know about the new symptom (vomiting) and see if he can't get a jump on the test results for the ambulatory EEG. The tech at the hospital told me that normally it takes about 3-4 weeks to get the results back from such a long EEG.

So, no I am not on medication yet, and it's worrying me....my brother's wedding is in September and I'm supposed to be standing up.

I'm unable to ride a bike as well AND my depth perception is horrible!

Kathi

[acc_angelsaroundtheworld]

Sandie -

Thank you for your response. Yes, I am having some sort of seizure activity, but the doctors are trying to figure out "if they ARE actually seizures". Just in the last week or 2 I've had a new symptom come up with them. They used to just start out where I would feel very flush, then my mouth would fill with warm/hot saliva and I'd feel dizzy...my vision goes and my hearing as well. It is like a staring type spell...but last weekend, along with the episodes of that, I've begun vomiting at the end and then the seizure or whatever it is passes. Last Thursday - Friday (I had those vomiting seizures the week before that), I had a 24 hour ambulatory EEG, but NO seizure episodes during that....frustrating! I'm calling the neurologist today to let him know about the new symptom (vomiting) and see if he can't get a jump on the test results for the ambulatory EEG. The tech at the hospital told me that normally it takes about 3-4 weeks to get the results back from such a long EEG.

So, no I am not on medication yet, and it's worrying me....my brother's wedding is in September and I'm supposed to be standing up.

I'm unable to ride a bike as well AND my depth perception is horrible!

Kathi

Kathi,

Thank you for your note and for sharing.

It is my understanding from talking with other parents who have a child with ACC and hydrocephalus that one of the signs that requires immediate attention when a person has hydrocephalus is vomiting.

I would strongly suggest that you call your doctor today like you said and inform the doctor about the vomiting symptom you're having and tell the doctor all the details that you wrote here as well.

Sandie *Mom to 15 year old Matthew with complete ACC*

[CJVK]

Sandie,

I know what you mean by doctors not giving you the information... My family doctor was not given the report until six months after I was hospitalized, I had only been told by him and siad I already knew...

[T. J.]

I have ACC and do not drive. I learned how to ride a 2 wheeled bike but since I have no depth perception what so ever (never have had any), it scares me when I'm not touching the ground! I also do not play regulr sports as it is dangerous. I do participate in special olympics however!

[acc_angelsaroundtheworld]

I have ACC and do not drive. I learned how to ride a 2 wheeled bike but since I have no depth perception what so ever (never have had any), it scares me when I'm not touching the ground! I also do not play regulr sports as it is dangerous. I do participate in special olympics however!

T. J.,

Thank you for sharing that information.

My own son who has ACC is 15 years old. He does not ride a two wheel bike but he rides an adaptive three wheel bike and likes it. One of the things he has trouble with though (due to depth perception I'm sure) is that when he is riding his bike/trike on the sidewalks he will ride right off the sidewalk as if he doesn't even understand or see that the sidewalk and the road are two different heights. I always have to watch him very closely if he's riding the bike on the sidewalk.

I'm so glad that you participate in Special Olympics! :)
What activities in Special Olympics do you do that are your favorites?

Sandie

[KathiDG]

I finally got put on meds for the episodes/seizures....just based on the symptoms..and vomiting was what put it over the top. That and they occurred 3x in 2 days.

Sandie - I am 99.99% sure my shunt is doing fine. I don't have any of the tell tale signs that something is wrong with it. I'll be very shocked/surprised if after all this my shunt IS taking a nosedive....I'm just reflecting back on my LAST shunt malfunction 2005-06. I was having far more severe symptoms than this and it was constant.

At the neurologist today, I was also able to have a look at my CT scan. She made the statement that the corpus collosum could've disintegrated over time?? I'm not sure that is possible. It's either gone from birth or not gone at all, right? From my CT, the corpus collosum is completely absent. I was like WOW.... quite interesting.

[LIZARD]

Hmm...just read this comment from this site: http://brainintegrate.com/factor.htm

"Corpus callosum shutdown: Brain disintegration resulting from corpus callosum shutdown often originates as a coping mechanism for stresses occurring in early childhood, and is usually an on-going state. In this case you also tend to poorly access functions of one hemisphere or the other to varying degrees. Since, in early childhood the dominant mode of processing is Gestalt, the usual result is poor development of Logic functions, causing difficulties with reading comprehension, spelling and problems with abstraction such as mathematics."

I also Googled "Corpus Callosum Atrophy" and came up with a lot. You might wanna take a look.

*hug

LIZARD :)

[acc_angelsaroundtheworld]

I finally got put on meds for the episodes/seizures....just based on the symptoms..and vomiting was what put it over the top. That and they occurred 3x in 2 days.

Sandie - I am 99.99% sure my shunt is doing fine. I don't have any of the tell tale signs that something is wrong with it. I'll be very shocked/surprised if after all this my shunt IS taking a nosedive....I'm just reflecting back on my LAST shunt malfunction 2005-06. I was having far more severe symptoms than this and it was constant.

At the neurologist today, I was also able to have a look at my CT scan. She made the statement that the corpus collosum could've disintegrated over time?? I'm not sure that is possible. It's either gone from birth or not gone at all, right? From my CT, the corpus collosum is completely absent. I was like WOW.... quite interesting.

Kathi,

I hope that whatever it is that is causing the seizure-like activities and the vomiting will be figured out very soon so you don't have to wait and wonder.

I cannot offer any advice other than what I have learned from my own son's doctors and specialists and from talking/writing with many other parents who have a child with ACC, from going to the ACC Conference and I will tell you that I have only been informed that either you are born with or partially with or without your corpus callosum. Agenesis or partial agenesis of the corpus callosum is congenital and a person is BORN with it.

Honestly, I would want to ask another doctor about the mysterious disintegration of a corpus callosum suggestion/comment made by your Neurologist because it made both my husband and I laugh. In all these 15 years of dealing with my child's ACC I have not ever once been told such a thing by any of my child's specialists/doctors.

My thoughts and prayers are with you as you wait to find out more about your symptoms and the cause. :)

Sandie

[KathiDG]

I think she was coming from the fact that I was diagnosed w/ the hydro 32 yrs ago, back in 1977. My pediatric neurosurgeon DID NOT give me copies of any of my scans from birth/growing up...he AND my current neurosurgeon are located in Milwaukee, 45 min away from Racine, where I live. I'm seeing a neurologist in Racine. So they would not have copies of my pediatric scans I don't think...

I have some at home (old films) that I'm going to bring to my next appointment with them in 6 weeks. From what I can tell, my CT at 2 days old, I don't see the Corpus Callosum either....

So far, the Keppra is making me a little drowsy and occasionally nauseated, but that's it...it's not severe or anything though, so I'm hanging in there....

[LIZARD]

I think she was coming from the fact that I was diagnosed w/ the hydro 32 yrs ago, back in 1977....From what I can tell, my CT at 2 days old, I don't see the Corpus Callosum either....

CT a 2 days old in '77?? Wow, I feel old! :eek: The first CT I had was the (three :rolleyes: ) I had just before my last surgery. How long had CT been available then?

LIZARD :o

[acc_angelsaroundtheworld]

I think she was coming from the fact that I was diagnosed w/ the hydro 32 yrs ago, back in 1977. My pediatric neurosurgeon DID NOT give me copies of any of my scans from birth/growing up...he AND my current neurosurgeon are located in Milwaukee, 45 min away from Racine, where I live. I'm seeing a neurologist in Racine. So they would not have copies of my pediatric scans I don't think...

I have some at home (old films) that I'm going to bring to my next appointment with them in 6 weeks. From what I can tell, my CT at 2 days old, I don't see the Corpus Callosum either....

So far, the Keppra is making me a little drowsy and occasionally nauseated, but that's it...it's not severe or anything though, so I'm hanging in there....

Kathi,

Thank you for your note and for the additional information.

It's wonderful that you have old scans at home. Most definitely bring those scans along with you to your next appointment with your neurologist/neurosurgeon.

Below is the link to a handout called: "How To Get The Most From Your Neurologist Visit". It is a handout that was written by Dr. Elliott H. Sherr, M.D. (who is very familiar with ACC and corpus callosum disorders) and it was presented by lecture at the ACC Conference in 2004. Dr. Sherr is a Pediatric Neurologist at the University of California, San Francisco (UCSF). Even though Dr. Sherr's lecture handout is geared toward children with a diagnosis of ACC it still offers valuable information for anyone who is diagnosed with ACC or a corpus callosum disorder and is worth viewing, I believe.

http://www.nodcc.org/pdfs/Conference_Handouts/conferencesherr_neurol_04.pdf

Dr. Sherr and his collaborators are involved in a Brain Study Research Program at UCSF. More information about the ACC Research Program can be found at the website below:

http://neurology.ucsf.edu/brain/callosum/callosum.htm

Dr. Sherr has seen many of the kids who have ACC or partial ACC who are involved in the ACC-Listserv e-mail support group that I belong to through the ACC Network.

Dr. Sherr has also seen and examined Kim Peek, also referred to as the "Real Rainman". Kim Peek has agenesis of the corpus callosum among other medical conditions. You can view more about Kim Peek and see a video of Dr. Sherr with Kim Peek at the link below. The particular video I mention is Video #2 and Dr. Sherr with Kim Peek begins at about the 4:24 mark.

http://agenesiscorpuscallosum.blogspot.com/search/label/The%20Real%20Rainman

Take good care of yourself.

I am glad that you are hanging in there. I will continue to keep you in my prayers. :)

Sandie *Mom to 15 year old Matthew with complete ACC*

[KathiDG]

LIZ - I'm not sure how long CT had been available at that time in '77. It would've been May 8, 1977 when I had that scan. I think it was done just AFTER my 1st shunt was put in because in some of them I can see the shunt catheter in the brain. Might've been to check the placement and make sure the vents were at a "normal" size post-op.

Does that qualify me as a Dino? lol....

[LIZARD]

Does that qualify me as a Dino? lol....

Nope. ;) Dinos are all dx'ed pre-CT. :)


LIZARD :)

[CJVK]

Hi Haylea,

I have c-ACC, MID LD and I am hearing impaired.

~CJVK

Does anyone have Agensis of the Corpus Callosum? My CT scans and MRIs say I do. I was just wondering if other people with hydrocephalus has it.

I have obstructive non-communicating hydrocephalus.

Haylea

PS. I was wondering what it means? I have heard it means the two hemispheres of the brain do not connect a certain way???? I honestly do not know... I recently found out the information from a CT or MRI in 2006 when I picked up copies of my previous scans in 2008.

[CJVK]

Sandie,

I just found out about my ACC thru picking up a medical report CT scan. I've had hydrocephalus (shunted) since I was born. No mention was made to me or my parents about ACC. I'm 32 now.

The reason for my GETTING this CT scan was for possible seizure activity. I have some sort of abnormality in the left temporal region where my brain gets slower than the rest of it for periods of time. And then I read that ACC can cause seizures.....hmmm....

The question that's on my mind right now regarding all this: my local Dept of Voc Rehab is in the process of helping me find employment (VERY SLOW GOING!), and we all think it would be beneficial that I have my Driver's License.

Is it possible to HAVE ACC AND a Driver's License? I mean, as long as we find out what's going on regarding these seizure episodes I'm having? I know the seizures have to be controlled in order for me to get the license in that aspect...but does ACC in itself prevent people from driving? I don't want to get my hopes up if it's not even a possibility now...

Thanks for any input you have! I appreciate it sooo much.

I checked out Lynnea's site as well...very cool. It explains why I have such a love for music...been like that since I was very young. I remember singing to and from school on the "short bus" every day.....loved choir....

Hi Kathi, I have c-ACC and though it took me three and a half years to learn with an instructor, I am now driving on my own. ~ CJVK

[acc_angelsaroundtheworld]

CJVK,

I am SO happy for you that you got your drivers license and learned how to drive!! :)

Way to go for your persistence and determination to learn.

Sandie *Mom to 15 year old Matthew with complete ACC*


Hi Kathi, I have c-ACC and though it took me three and a half years to learn with an instructor, I am now driving on my own. ~ CJVK

[CJVK]

CJVK,

I am SO happy for you that you got your drivers license and learned how to drive!! :)

Way to go for your persistence and determination to learn.

Sandie *Mom to 15 year old Matthew with complete ACC*

LOL, Thanks Sandie!!!! I tell you it has been great not having to be at the bus for 7 and get an extra 45 min of sleep!!!!!!!!

[CJVK]

So I am preparing for college and need to buy a new laptop or a computer. Is there any computer/laptop out there that works best with Kurzweil or Dragon Naturally Speaking and other assistive tech. programs (i.e. Mac vs. PC) Does anyone have any advice on what to get?

~ Cassie