Mental Disorder - Lissencephaly - Pachygyria

Vinothini · Feb 3, 2010

Hi All,

Kindly requset you to provide me suggestion to help overcome or improve my brother's kid who is affected by Lissencephaly - Pachygyria. He is 1.2yrs old and we had the doubt on his mental development from 7 months. But my brother wanted to wait till 1yr and see his improvement.
He is able to sit but not as a normal child also his head is unsteady. We went to pediatric neurologist 2 days back and the MRI report says he has some disorder like Lissencephaly - Pachygyria. We went through many sites and we could not with stand the clinical effects and other stuff and the life expectancy is short. But my husband still has the hope that he can become normal one day. Also we consulted doctor with his report. Baby does not have any abnormal symptoms like seizures, weight loss, respiration and feeding problem. He is not recognizing people, not crawliing and not walking. Have anyone of come across such situation. Can we do something to change his life, Will he come normal? Am posting this in this forum beyond doctor's consultation hoping somebody might have heard or come across this situtation. We really understand we need to take ultimate care of him. My brother is very very caring and baby does laughs and smiles at him than at anybody else. Do you know what kind of therapy or care we need to give him? I will be greatful for any of your advice.

Thanks.

tikka · Feb 3, 2010

Vino, Hugs to your brother's family. Congenital disorders are a big challenge that most of us parents do not understand. I hope you get the best medical care for the child. Has physio or occupational therapy been recommended for the child? Often, even with severely debilitating conditions a child may be able to learn to become self-sufficient. I dont have an understanding of your nephew's problem, but I have seen cousin's children with severe developmental issue be self-sufficient (I am deliberately not using the word normal) when interventions started around the 9th month. Good luck for brother's family and God bless for the sweet child.

Vinothini · Feb 3, 2010

Tikka i was happy to see your response. We have the final consultation with neurologist tomorrow and he recommended for occupational therapy. Can you give me some idea as to how i can help him on this. He sometimes enjoys when i sing rhymes. Am a working mother and i want to give my nephew as much as i can. My husband advised me to plan a routine to meet him daily atleast for 30mins and spend time with him. Please suggest.

Aadhusmom · Feb 3, 2010

Vino - I have seen a couple of children with lissencephaly and the news isnt too good. The best thing is to start occupational and/or physio therapy right away and maybe speech therapy if needed later. Its very hard to predict how much self-care a given baby will be capable of years from now so dont worry about the long-term prognosis for now. If the child hasnt had a vision/hearing check it may also be good to do them. I have to go now, more later. 99hugs000

Vanathi.

PeeVee · Feb 3, 2010

Vino,

I don't know anything about it..Hug to the baby and my prayers for the family.

Vinothini · Feb 10, 2010

Hi,

Can someone from the admin delete this thread.

Aadhusmom · Feb 18, 2010

Vinothini said: ↑

Hi,

Can someone from the admin delete this thread.
Click to expand...

May I ask why? We cant delete threads without a valid reason.

Vanathi.

Vinothini · Feb 22, 2010

This is being retrieved when someone search by Lissencephaly in google. My family noticed and they feel that i shouldn't have put this in forum. I plead you to delete this thread.