my daughter is a lissencephaly baby, 1.4yr old

[deleted account] ( 6 moms have responded )

my baby is nt able to hold head, also there is no eye contact, i would like to kw if it would be possible tht she hold head.will it be possible tht she sit and walk a mnth back she was active as she use to turn on sides by herself bt nw as the jerks increased she is very dull n low i have heard abt HBOT (hyperbaric oxygen therapy) so is it useful as lissencephaly can also be due to lack of oxygen to brain, also if chmozomal analysis usefu

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Raja - posted on 04/29/2013

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is there any centers offering HBOT (hyperbaric oxygen therapy) in Chennai, India

[deleted account]

doctors here kw little abt it and they only say that u hv to wait n watch as all patients are nt same, also here in india people are very conservative belinda and so no one like to talk abt it or share their experience with others so tht others find it useful bt no one will talk.
by the way her physiotherapy is going on

Belinda - posted on 06/12/2012

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I understand Sona :) I wish I could help in that way. Good Luck with finding the information and support that you need. Can your doctor or Neurologist offer any online communities or local support groups that may offer you some support?

[deleted account]

Hi Belinda,

Thanks for your concern, i visited many sites for it bt nw i was looking for someone with the same problem and their practical experience regarding the same.

Belinda - posted on 06/12/2012

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Hi Sona,

I don't know anything about Lissencephaly, but I found this link on Wikipedia. If you follow the link you might find some answers :)

The Cortical Foundation is a non-profit organization formed in 2011 to assist those affected by lissencephaly; and other cortical malformations like focal cortical dysplasia, microcephaly, megalencephaly, polymicrogyria, tuberous sclerosis, hemimegalencephaly, schizencephaly, and heterotopia.

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