sam01
New Member
Posts: 21
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Post by sam01 on Mar 2, 2009 17:58:18 GMT
thank you everyone who has replied sorry to hear that caroline and thank you for your advise
you know when you just have a gut feeling that there is something more than what they are saying the dr's said it was behavial and that is no way true x x
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Post by caroline kelly on Mar 2, 2009 18:57:22 GMT
My pleasure honey,
You know they said that to me once and they never said it again!!!, trust your gut honey and fight them all the way you know your child like no other can.
Take care
Caz xx
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sam01
New Member
Posts: 21
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Post by sam01 on Mar 2, 2009 21:35:16 GMT
i will thank you it drives me mad we have enough to battle with and then the dr's who are meant to help have to make the fight so much harder x
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Post by caroline kelly on Mar 2, 2009 21:44:59 GMT
Always here for ya honey, have you got Msn honey? if you have you can catch me at cazbar_8@hotmail.com.
Just remember you know best , them they think they do!!
take care
Caz xx
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sam01
New Member
Posts: 21
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Post by sam01 on Mar 3, 2009 8:47:26 GMT
i haven't got msn no not that good with computers really lol x
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sam01
New Member
Posts: 21
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Post by sam01 on Mar 6, 2009 7:53:47 GMT
have any of the children here with pachygyria been diagnosed with a genetic condition as weare looking into what lewis may possibly have x
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Post by Laura on Oct 7, 2014 13:35:40 GMT
i do really look into thngs on the internet but i find it really hard because the conditions that are associated with what he has only have a couple of things that match him. My son is doing really well he is three and has just started to pull to stand and he has a k walker although he is not really ready for it , his speach is ok , but he only seems to have difficulties learning and nothing really medical like heart problems or breathing nothing like that so we are lucky and to date we have only had one bad siezure and the only other things he suffers from are the odd absence here and there . i understand that this may change and am ready for that. i think the most difficult thing now for for us is that we don't look at lewis as a diagnosis or anything like that we look at what he can do and where we can help him develop next but now with the genetic testing as much aswe want to know what is wrong with our little boy its hard also because it makes everything so real. The dr was also quick to tell us that his condition was very rare and he brain damage was massive yet he continues to do well. i just wish as i am sure everyone here does that there was a little door to when they were ten or any other age and you just open it and have a quick look at where they would be in 10 years and then we would know what we were aiming for and coud come to terms with that thank you
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