SailorMom Posted October 28, 2010 Share Posted October 28, 2010 Well - it isn't anything to do with the corpus callosum (the original suspicion)- although it is closely related. DS 12 has Subcortical Heterotopia (grey matter in clumps within the white matter - in his case in the frontal lobes). Can cause everything we are dealing with (all the dys's). Considered a "rare disease", and I can hardly find any information... Google is failing me! We are very fortunate that his is as mild as it is. Doesn't really change anything - except that now he will be going in for EEG's to check for seizure activity (all of the documented cases develop some form of epilepsy by the age of 17). We're crossing our fingers that they just don't really know much about it and somehow DS will be that "one" who doesn't have seizure activity.... Anyway- sometimes it feels like he is a science experiment to his docs. I'll be happy for him when we can just get back to normal :) Quote Link to comment Share on other sites More sharing options...
RamonaQ Posted October 28, 2010 Share Posted October 28, 2010 Wow. So rare that google doesn't know about it! I am sure it is a relief to finally have an answer. I will hope your ds will not be one to encounter seizures (scary to have that part of the diagnosis). Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted October 28, 2010 Share Posted October 28, 2010 Glad you got an answer--though one usually hopes that brings more info, not a new frontier! May God bless you as you forge your way ahead. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 28, 2010 Share Posted October 28, 2010 :grouphug: I hope this answer helps you to be able to address what you've been dealing with. It must be scary, though. How was it diagnosed? We have an MRI tomorrow for a dc. Quote Link to comment Share on other sites More sharing options...
SailorMom Posted October 28, 2010 Author Share Posted October 28, 2010 Ours was diagnosed by an MRI as well. It really doesn't change much as far as his LD's or how we are working with him, from the sound of it so far. Although, I think having a real medical diagnosis rather than just dyslexia will help him in the future. So many insurers, schools, whoever, don't consider dyslexia a real diagnosis. We're glad to know - knowledge can only be a good thing! Quote Link to comment Share on other sites More sharing options...
Mom22ns Posted October 29, 2010 Share Posted October 29, 2010 While I understand your hope that the EEG is clear, when my ds was diagnosed with seizures and put on seizure meds, he improved dramatically. He was losing learning each time there was seizure activity and by getting rid of the seizures, he was able to make a lot more progress with a lot less regression. :grouphug: For us, answers helped. I hope just having the diagnosis gives you a little peace and you are able to find the best path for your ds. Quote Link to comment Share on other sites More sharing options...
SailorMom Posted October 29, 2010 Author Share Posted October 29, 2010 I have heard so many stories like that - my dear friend in CA is a PS teacher, and she has a little girl in one of her classes who was two years behind in school until they diagnosed her with having hundreds of little mini seizures each day - within a very short period of time she was two years ahead :) Quote Link to comment Share on other sites More sharing options...
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