Anyone with a child with Agenesis of the corpus callosum

[tridean]

Hi All,
My son is 5 1/2, and at 6 months was diagnosed with Agenesis of the Corpus Callosum

Has anyone else on this forum have a child, or even an adult relative/friend with it, or even have it themselves?

We have had to put our son in a special school because his learning development is delayed as is his motor skills. He has an amazing memory especially with numbers and 'loves' music. He also has a fetish for looking through the white and yellow pages!

Anyway, our experience with talking with other parents is that the symptoms of ACC are very varied, some kids are unfortunately a lot worse than our son.

There is not much information on it.

My wife is part of a group, and although she has not been able to get responses from too many, those that did respond all said they had had the anti D shot whilst pregnant. My wife had also had an xray on her wrist too whilst pregnant so it could be anything really.

Cheers
Dingo

 

[Laura]

Is your son on a completely gluten and dairy free diet? What are the possible levels of toxicity in the prenatal environment? That is, does the mother have mercury fillings, possible other toxicities? Was the child vaccinated with mercury containing vaccines?

 

[Lilou]

Hi Dingo,
Your post is the first I have ever heard of Agenesis of the corpus callosum, despite being a primary health care provider.
In a quick search, I did learn a bit about the disorder. ie) The character in the movie Rain Man was based on a man with ACC, although some say he was autistic (?). It seems ACC is often misdiagnosed as Autism.

As for the Rhogam (anti-D) shot, I was confused - did your wife have the shot during pregnancy? While I worked for a large obstetric practice, I never heard of the doctors giving anyone anti-D during pregnancy. It was only given if the infant was RH positive and after delivery! I was a bit shocked to see that many doctors give anti-D antepartum, prophylacticly. Which sounds more like a case of CYA (cover yer arse) on the part of the doctor, rather than a necessity. And could very well have a connection to ACC.

It is often the things we can't see that cause us the most harm. My heart goes out to you and your family, as our toxic world is causing more havoc than we even imagine.

 

[Laura]

I'm on an Rh neg discussion list and there's a whole lot of women talking about the Rhogam shot and the mercury toxicity they suffered after having it.

No matter what the diagnosis is, I suspect that this child will benefit mightily from a gluten, dairy and lectin free diet as well as, possibly, a mercury detox. The mother as well.

 

[Lilou]

No matter what the diagnosis is, I suspect that this child will benefit mightily from a gluten, dairy and lectin free diet as well as, possibly, a mercury detox. The mother as well.

I agree. An acquaintance of mine has a son who is autistic. During a conversation, I told him I could email some articles on autism and diet if he was interested (eliminating gluten, dairy, mercury detox). He was open to this until I said, "well, for starters, he'll have to stop drinking 3 liters/day of Dr. Pepper soda pop". At that point, the conversation was over, he said there was no way he'd be able to take his Dr. Pepper away! He did not give me his email address & I changed the subject. Go figure!

In addition to this, the mother of this autistic child, who has 5 computers in her home, has not once in the 5 years since her sons diagnosis, even bothered to google Autism! I was totally taken aback. :O

 

[tridean]

Thanks Guys.

First off, he was born with it. When he came out his mothers womb, he had a lump on the top of his head and coming from that was a rats tail type of hair-do. At first no one thought anything of it, until a doctor saw him at 6 months. He was shocked that no one at the delivery saw it and though to check it out because as he said, hair coming out like that is sometimes a sign of cancer. So he was tested etc and it was found that from the lump he had what are like grey veins that all ended up in the area where the corpus callosum is supposed to be, but in his case doesn't exist. According to our doctor, this lump and the veins were in such a position that if they had been a millimeter one way or the the other he would be suffering terribly...he reckons we are extremely lucky.

Anyway, it did become apparent when he got to around 2-3 years of age that his learning abilities were not 'normal' as it were

We have 6 children, 4 of which my wife has given birth to. My wife's oldest son has what is similar although he doesn't have AgCC he also does not have the same learning capabilities of 'normal' children.

As for this Anti-D shot, yes she was given it while pregnant. Our 5th child had a different blood group and apparently this has something to do with it. I will have to check back with my wife, but I think she told me she was given two of these Anti-D shots while pregnant.

On the one hand, we do not have him on any sort of diet. I am only at the start of trying to eliminate gluten and dairy. Can you imagine a household with 6 children, and a vegetarian mother, and then a father trying to get his kids off gluten/dairy and sugar, and his wife off Soy???? I have to show the evidence to them when they are ready, and they are not ready yet, but in due time.

On the other hand, our son, David, has brought us joy we had never experienced before with any of the other children. This is not to say we love any of the other children less as we do not, but David has done something to us all. It is very hard to explain. It's as if his being has made us all the more appreciative of all the other children. I find it difficult to put in words to some people without coming across as if I think parents don't appreciate their kids enough, it is definitely not that and is just a personal thing for us but David has had a profound effect on us.

He has had a lot of help by the 'system' and you can imagine someone like me keeping my eye sternly on these people, but to their credit, they have been good. I have had on more than one occasion one of these therapy workers tell me that David was the highlight of their year. One therapist was crying on her last visit with him.

He has benefited immensely from the fact that he has 5 siblings. Here is where he learns the most. He can work a DS and computer like anyone, his memory is amazing, but I think his best lessons in life will come from travel. It is our goal to travel around in a motor home or something similar. We want to do with this with the two younger kids.

This may come as a surprise, but we do not see his condition as a disability, in fact it feels like a blessing. My major concern is of course, the lack of knolwedge about it, and I get extremely worried when I see politicians trying to pass laws such as they were trying to do here in South Australia not long ago where they wanted to make swine flu and other flu vaccines mandatory, and if you didn;t take them you'll be quarantined for 3 months. I just shudder and get very angry at how easily a body could pass such a stupid law in the first place, but even more so, no one really knows the effects vaccinations have on normal people let alone someone with AgCC, and this is where my fears lie. When a state, such as these here in Australia can make your child ward of state at the click of two fingers, I get very worried, it has happened here when parents don't want their kids to go through kemo for cancer etc.

 

[Lilou]

[quote author=Dingo]
I get extremely worried when I see politicians trying to pass laws such as they were trying to do here in South Australia not long ago where they wanted to make swine flu and other flu vaccines mandatory, and if you didn;t take them you'll be quarantined for 3 months.
[/quote]

I don't know anything about the laws regarding vaccines in Australia, but here in the USA, all states (except Mississippi and W. Virginia) allow religious exemption from vaccinations. And 21 states allow personal choice exemptions. My point here is, as a member of FOTCM, this would place you in the religious excemption category, as vaccine choice is clearly spelled out in the statement of principles. Just a thought....

 

[Laura]

FCM is not legally established in Australia though I'm not sure of the legal ramifications.

 

[TraceyJ]

Hi Dingo, my child is now 25 and was diagnosed with ACC at the age of 5 days old. I saw a geneticist when she was 6 as I had been told it could be genetic but she did not fit any of the symptoms. The doctors and specialist told me it can be caused by a viral infection in the mother when she is 8 to 16 weeks pregnant. My daughter is mild to moderately affected in all areas and did benefit from smaller special ed classes in a "normal" school where she socialised with other children of all abilities. Her social disability has become more pronounced the older she gets and changes from hour to hour. I wish you all the luck with your child.

 

[TraceyJ]

The movie Rain man was based on a man who they discovered has Agenesis of the Corpus Callosum who happens to be savant. My child is good with names but not savant

 

[Mrs. Peel]

The movie Rain man was based on a man who they discovered has Agenesis of the Corpus Callosum who happens to be savant. My child is good with names but not savant

Hi TraceyJ!

Welcome to the forum, We encourage newcomers to post an intro over in the Newbies section and tell us a little bit about yourself and how you found your way here. :)

See here:

http://cassiopaea.org/forum/index.php/board,39.0.html

 

[shakenbake]

Hi everyone...

I'm aware this is an old topic and the initial poster may have been able to find more information and answers since posting this... But I just wanted to clarify a few things - as when searching the internet for 'agenesis of the corpus callosum Australia' this post comes up - so in future many other parents may see this...

The rhogam shot here in Australia is offered during pregnancy. I too had the shots and also have a child born with complete agenesis of the corpus callosum - BUT the Anti-D injections are not the cause of her condition. I can be quite certain about this as my first shot was done well after the prenatal formation of the corpus callosum. The corpus callosum forms during early pregnancy and is completely formed by about week 18-20 (various research is slightly different). This formation then later thickens as gestation continues and thickens during childhood and adolescence. The anti-D shot is primarily given at weeks 28 and 34 (unless a bleed evident earlier). So, there is NO connection between ACC and the shot in my case. I'm not sure if the original poster had the injection earlier, but in all my reading this does not appear to be a factor and certainly the specialists I have dealt with also do not believe this plays a role.

As for vaccinations, yes the flu shot contains a small dose of thiomersal, however mercury is only toxic after the levels reach a certain amount in the body. Small levels of mercury are found in some foods (ie some fish) which is why there are suggested safe levels of intake during pregnancy - but this does not mean women must avoid fish altogether. It has not been proven that thiomersal has any adverse affects despite MANY studies being done on the matter by many different research organisations.

I spent months searching for answers, and pondered about the medications I was provided, the flu shot, the investigations and the potential impact on my developing baby. It's healthy to search for answers, but not the best just to blame something without actual medical evidence. Honestly there is SO much going on to grow a baby especially in the first trimester, we don't yet know the effects that even stress, polution, choice of hair wash, vitamins etc etc have on our growing babies - we don't know if our previous life experiences have any affect, or if it just happens to be one of those very unfortunate random things that has no explanation. If you look into genetics and basic human/ animal development changes/ abnormalities can occur for no reason - some of these random changes in fact ended up being an evoluntionary process! If we lived in a bubble with perfect conditions, no stress, perfect diet (whatever that be), had a perfect past record of health (for both Mum and Dad) and only had a vaccination that resulted in a baby born with a condition - then the cause and effect would be possibly a little higher.... But we don't live in these conditions so we must rely on the medical research (and only reliable credible sources) to get any sleep at night.

I do also wish to add there is no thiomersal in Australian vaccinations for children (with the exception of the flu shot, but I believe a thiomersal free one is also available).

Okay - so now I'm really off track. But the main reason for the post was to clarify the Anti D shot information. To those who have children (or are in the prenatal stage) diagnosed with ACC (or AgCC as sometimes referred to) a group of parents are building a National Support Group organisation to provide information, raise awareness and support people affected... Just search for AUS DOCC INC. (not sure if I am allowed to post links here, so I won't just in case)...

It is always good to be skeptical and question things, but don't let it detract from just taking a moment to sit and enjoy your child who is perfect just they way they are!

 

[anart]

As for vaccinations, yes the flu shot contains a small dose of thiomersal, however mercury is only toxic after the levels reach a certain amount in the body. Small levels of mercury are found in some foods (ie some fish) which is why there are suggested safe levels of intake during pregnancy - but this does not mean women must avoid fish altogether. It has not been proven that thiomersal has any adverse affects despite MANY studies being done on the matter by many different research organisations.

That is patently untrue and gives reason to doubt the rest of the information you have provided. Do you, by chance, work for a pharmaceutical company?

 

[Beau]

As for vaccinations, yes the flu shot contains a small dose of thiomersal, however mercury is only toxic after the levels reach a certain amount in the body. Small levels of mercury are found in some foods (ie some fish) which is why there are suggested safe levels of intake during pregnancy - but this does not mean women must avoid fish altogether. It has not been proven that thiomersal has any adverse affects despite MANY studies being done on the matter by many different research organisations.

I have to strongly disagree. There have been studies clearly linking neurodevelopment disorders to mercury exposure from thimerosal. The blood-brain barrier in infants is not intact until around 6 weeks old so these vaccines allow mercury and aluminum to cross into the brain. You are also leaving out the fact the certain vaccines contain other chemicals such as formaldehyde, aluminum, sorbitol, glycerin, soy protein, and yeast, along with poly-sorbate 80 which tricks the brain into opening up the blood-brain barrier and allow these pollutants in. Someone who thinks vaccines are perfectly fine is either delusional or they work for the companies that produce these products and have a vested interest in spreading disinformation regarding vaccines.

 

[shakenbake]

Just to clarify - no I do not work for a pharmaceutical company, nor am I delusional (being a mental health practitioner I actually understand what this word entails).

Everyone is entitled to their opinions, and I encourage everyone to determine these opinions from current medical research obtained by independant and credible sources and not simply listen to those on forums or websites without credentials (and yes, that includes listening to my posts).

You are correct - we don't know as an absolute fact that vaccinations are safe, in fact there are adults and children that do have clear adverse reactions and I am certainly not discounting in the future we may become more aware of problems with vaccinations. However, currently there is no cause and effect that can be established conclusively. I simply request that people do not get involved with hype (whether that be PRO or ANTI vaccination) but instead investigate credible information and make decision based on this.

For me to simply blame a vaccination would be a process of trying to reduce my guilt and redirect my anger elsewhere (which I understand can be a motivator for many). However, this process would be misguided for myself, knowing that I do not fully understand the impact of all my past choices - living in cities, driving a car, using mobile phones, eating processed food, using household products etc etc - even genetics plays a role. Who would have thought before evidence of toxoplasmosis that cats could potentially be the cause for a still birth or miscarriage?!?

My point goes back to the fact that if it were so cut and dry that vaccination cause problems, we would not have seen children born with abnormalities beofre the invention of vaccinations, nor would we see children with abnormalities born to parents who do not vaccinate - but we do. The cause and effect is simply not that easy to establish.

Perhaps we will find out in the future that vaccinations have been the cause for many conditions, but perhaps we will find it was actually prenatal vitamins (which are currnently being looked into), or the fumes of petrol when filling a car, or not getting enough sleep, or getting too much, or eating too much spinach etc etc. My point is that as research continues we do learn things we previously thought were safe actually aren't. But we can only make decisions off the CURRENT evidence, not the future. We already now know that too much Vit A can have negative consequences (yet found in fruit!), or too little sunlight can be linked with various conditions (vit D)...

Again, I simply request that people make their own decisions based on credible sources. One persons decision may be different to mine and that is fine. BUT to state that it is as simple as saying vaccinations are all bad, well thats not being discriminate of all the other potential nasties/ hazards and simply looking at it all from one view point. I am certainly not PRO every vaccination and I don't aim to preach that people do or don't vaccinate - I just request that things be looked at from ALL angles.

(and trust me, I have looked into vaccinations due to many reports from parents etc which I don't discount and due to the fact that my daughter has a possible 1 in 3 chance of having autistic like traits (due to her condition - depending which research you look at)... I had to come to a happy conclusion that works for me and my family based on the medical research and knowledge we have today)