emmam
New Member
Posts: 1
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Post by emmam on Apr 29, 2008 12:31:56 GMT
hi Emma here my daughter was diagnosed with lissencephaly but we have since been told its subcortical band d heterotrophia, very similar in fact still within the lissencephaly type! i cannot find anything anywhere apart from what it affects doctors although have been great dont seem to be able to help. has anyone ever heard of this or have any experience in this! it would be great to hear from someone. take care emma
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Post by Jon on Apr 29, 2008 19:18:06 GMT
Emma
If you do a Google search for 'subcortical band heterotopia' you should find lots of information. It is one of the mildest forms of lissencephaly. Quite often girls with this learn to walk and talk although I believe that seizures can still be a problem.
good luck.
Jon
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Post by kiwimeg on May 21, 2008 22:23:52 GMT
Hello, My daughter Caitlin has this dx she was dxs at 20 months and it has been a big learning curve for us. No there isnt alot of infomation on it but there is a support group on the yahoo groups sbh I think it is I am not on my home computer but when I get home I will find the link for you. As like alot of conditions the signs and symptoms vary greatly. I can tell you want we have experienced With our Cait. Cait hit all her milestones around the right time , but when she got to 15 months and wasnt walking we started to feel there was something wrong at 18 still not walking and no speach or sounds we were very worried we had a vist from a visiting neuro developmental therapist how suspect CP we then had our first seizure ( well the first we had seen) it lasted 25mins we had a paeds appoint the following week but on the day of the appointment she had another seizure and was addmitted into the childrens ward and we were given the dx. Cait is now four and a half and a happy wee girl. she is walking although she falls often, she signs a few words. She is quite autisic but also quite engaging lots of hugs and kisses. Cait functions at about 18 to 26 months depending on her mood ( or number of seizures she has) . We are you we are in New Zealand you can email at meganandbrent@clear.net.nz I would be happy to talk and help if I can Meg
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Post by kiwimeg on May 24, 2008 9:08:39 GMT
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Post by monicaRomano on May 31, 2011 1:03:06 GMT
Please, contact me on m_romano@hotmail.co.uk my daughter too has Subcortical Band Heterotopia.
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Post by spinneyeel on May 31, 2011 22:43:43 GMT
Hi my daughter was diagnosed with this disorder she is now 17yrs what would you like to know
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