Posted By Posting
Oct 23, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Sarah-Baby Quinn's Mommy
Sarah,

Has anyone ever evaluated Quinn for Rett syndrome. "Rett syndrome is most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay."

International Rett Syndrome Foundation-About Rett Syndrome

I was just reading about it for something else and thought of Quinn.

"Rett syndrome is confirmed with a simple blood test to identify the MECP2 mutation. However, since the MECP2 mutation is also seen in other disorders, the presence of the MECP2 mutation in itself is not enough for the diagnosis of Rett syndrome. Diagnosis requires either the presence of the mutation (a molecular diagnosis) or fulfillment of the diagnostic criteria (a clinical diagnosis, based on signs and symptoms that you can observe) or both."

Oct 25, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Thank you for that information! I have never heard of it. i took some time to read over the entire website. It does sound an awful lot like Quinn. I do think that if she did have this, she would have a milder form. The ONLY thing that makes me question if she has this is the hand thing. Quinn doesn't really have that issue with her hands. She doesn't hold them tight or close to her. They are pretty normal. I will definitely bring it up to her neurologist at the next appointment though for sure!!!
Oct 26, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Sarah, Thanks for listening. I hope the information is helpful. U r so kind.
Check with your
doctor first!