Does anybody have a child with retts syndrome? Need to talk

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tania123
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Posted: Fri Nov 25, 2011 8:34 pm 
Post subject: Does anybody have a child with retts syndrome? Need to talk
Has anyone got a child with retts syndrome? Id like 2 chat and get some advice! We have just got our daughters results bk.. Mri came bk normal but she had blood tests done and they have found a rare faulty gene thats close to retts syndrome. I dont really understand it all 2 be honest and wud like some advice, we are waiting for an app to c the geneticist and me and my partner are havin the blood tests done to c if we carry or have the faulty gene! Im so worried and scared. She is 11months old and is still practically like a newborn. She cant sit up or hold her head up for long periods, she is not smilin and is very undemanding. She hardly cries and suffers from seizures. Can any1 help me? Wud be really good 2 chat. She's my beautiful baby... Xxx
Jennifer256
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Posted: Fri Nov 25, 2011 9:56 pm 
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I am sure Kenty(sp) daughters has it, not sure if she comes on her anymore, hope someone replies soon xx
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GemGemz85
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Posted: Fri Nov 25, 2011 10:07 pm 
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Hi hun. I have taught 2 girls with Retts syndrone. They are both of primary school age now. I could give you my experiences of that if thats of any help? I'm sure there must be online support groups out there where you could speak to other Mums? Take care hun x x
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tania123
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Posted: Fri Nov 25, 2011 10:42 pm 
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Please do give me ur experience, it wud really help.... Thank u so much for replyin. I really appreciate it. Im so worried. Xxx
GemGemz85
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Posted: Sat Nov 26, 2011 8:32 am 
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Ok hun, you are welcome. I will put some information together for you and my experiences for you. I'll send it in a private message though to respect the confidentiality of the girls I know. X
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jane1978
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Posted: Sat Nov 26, 2011 11:17 am 
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Jennifer256 wrote:
I am sure Kenty(sp) daughters has it, not sure if she comes on her anymore, hope someone replies soon xx


her daughter does - you could try and send her a private message. Her little girl is about 3 now so will have a lot of experience
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Kenty
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Posted: Thu Dec 01, 2011 7:47 pm 
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GemGemz...you'd actually be amazed that there isn't really a support network for Rett Syndrome Sad

i have answered your PM, i log in every day or two so you will get any replies you need relatively quickly
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LauraG
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Posted: Tue Dec 06, 2011 4:58 pm 
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im glad u have sum answers now about ur daughter and i hope u can get the help and info u need.
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