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Supreme Being
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| Just wondering if anyone has heard of this or knows where to find more information. My 4yr old DS has ben diagnosed with ASD, however due to seizures he had an MRI done. We received the results on Monday and have been told that he has "agenesis of the Corpus Callosum", this is the part of the brain that connects the right and left sides, the symptoms of this condition seem to be the same as a child with an ASD and includes seizures. I am just looking for further information on the condition or if anyone else has had the same thing, from what i have read it is a rare condition but how many kids with ASD actually have MRI's done. Any help or information would be appreciated. Thanks
Tan - QLD
DD 8yrs -NT,
DS 6yrs -PDD-NOS, P-ACC, Epilepsy - My handsome baby boy! 
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Supreme Being
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Last Login: 9/02/2012 12:38:05 AM
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| Have you got any info yet? I'm surprised you didn't ask the ASD parents forum as well because many of those children have scans / epilepsy. I am wondering if you look at the children's hospital library, you could pick up some info there.
Mum to 3 girls, 8 & 11 yrs NT, and 6yrs ASD - the little whirlwind!
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Supreme Being
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Last Login: 2 days ago @ 3:18:05 PM
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| Thanks Ricky - no info yet. I was given a site by our OT but it didn't have a lot but hadn't thought about the childresn hospital. i'll have to have a look. I think what i should do is try and get into the peadiatric neuroligist - as hard as that is!
Tan - QLD
DD 8yrs -NT,
DS 6yrs -PDD-NOS, P-ACC, Epilepsy - My handsome baby boy!
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Forum Newbie
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Last Login: 12/04/2010 8:19:11 PM
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| hi, i have a 13 month old son who was diagnosed with agenesis of the corpus callosum in january. We are still learning as we are going along, it is a very rare disorder and it was discovered for us also from an mri. We noticed when our son was 4-6 months that he was not reaching any of his milestones. Doctors originally thought he had cerebal palsy so an mri was ordered. At this point in time our son cannot walk or sit independtly as well as other things, he army crawls around the house at quite a fast speed. With the help of physio and occupation therapy we have already noticed a difference. We do not know what his future holds for him but with all the help that we are getting we are very positive. If you have any questons please dont hesitate to ask. kylie
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Supreme Being
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Last Login: 2 days ago @ 3:18:05 PM
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| Kylie, I do have a question but your son may be too young for you to have worked it out yet. My DS is 4 and some days wakes up completly impossible - crying (screaming) for ages, we have discovered that is we give him some Nurofen he settles really quickly. We are wondering if he is getting headaches, i did read somewhere that it can cause headaches. Do you know anything about this? I really don't like giving him medicines unless he really needs them. Thanks
Tan - QLD
DD 8yrs -NT,
DS 6yrs -PDD-NOS, P-ACC, Epilepsy - My handsome baby boy!
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Forum Newbie
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| hi, Yes unfortunately my son is the same with the headaches, we have days where he will be very difficult, i give him panadol for relief which seems to help him, then he is his normal happy self, i also dont like to give it to him unless i really have to which makes it a little hard. I am not quite sure as to why they get headaches, apparently its just all part of acc. We are waiting for neurology appointments to find out more. I wish i could more helpful with the information. kylie
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Supreme Being
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Last Login: 9/02/2012 12:38:05 AM
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Are there any alternative therapies that you could learn and apply to help with the headaches? Like deep pressure massage, accupressure, or simple massage. Plus essential oils - eg Melissa oil is known for headache treatment (think I got the name right).
Mum to 3 girls, 8 & 11 yrs NT, and 6yrs ASD - the little whirlwind!
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Forum Newbie
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Last Login: 12/04/2010 8:19:11 PM
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| Thats a great idea ricky, definetly worth trying i will look into that. It wouldnt hurt to try.
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Supreme Being
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Last Login: 2 days ago @ 3:18:05 PM
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| Hadn't thought about the massage Ricky, but i think i will have problems doing that, with Sensory disorder he really doesn't like being touched expecially his head! Has told off older ladies in shopping centres for touching him. Might try anyway
Tan - QLD
DD 8yrs -NT,
DS 6yrs -PDD-NOS, P-ACC, Epilepsy - My handsome baby boy!
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Forum Newbie
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Last Login: 16/04/2010 8:08:57 PM
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| Our daughter was Dx'd with ACC a number of years ago, most information does not come from specialists here but from NODCC.org (National Org. for Disorders Corpus Collosum) the Listserv is very good and has many varies people on it from all over the world. Earlier this year Dr Elliot Sherr from the Uni of Maine (US)(recognised as one of the leaders in the Field) opened the Queensland Brain Institute Lectures with lectures on ACC they are on the QBI website Its often usefull to get your specialist to give a diagnosis of CP as well as it makes things easier with Govt departments and links better to services and symptoms are close. With ACC there are also often asociated other problems eg high/low muscle tone (in her case high legs low body) and mid line disorders. She is in a wheelchair and has had a Cold Suit made by Arctic heat on the Gold Coast as she suffers seizures with even minor increases of body temp (she has to be kept cool). hope this helps
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