Live With Rett Syndrome

Rett syndrome is a neurodevelopmental disorder that is classified as a pervasive developmental disorder by the DSM-IV. Many argue that this is a misclassification just as it would be to include such disorders as fragile X syndrome, tuberous sclerosis, or Down syndrome where one can see autistic features. The symptoms of this disorder are most easily confused with those of Angelman syndrome and autism. The clinical features include a deceleration of the rate of head growth (including microcephaly in some) and small hands and feet. Stereotypic, repetitive hand movements such as mouthing or wringing are also noted. Symptoms of the disorder include cognitive impairment and problems with socialization, the latter during the regression period.

Socialization typically improves by the time they enter school. Girls with Rett syndrome are very prone to gastrointestinal disorders and up to 80% have seizures. They typically have no verbal skills, and about 50% of females are not ambulatory. Scoliosis, growth failure, and constipation are very common and can be problematic.

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• Rett
• Syndrome
• Disease
• Autism

[itsmexarli]

May i ask, im going to report this on tuesday, how come that they are prone on having gastrointestinal problems? and rett's syndrome have 4 stages right? can you please elaborate it for me. thanks a lot. it will be a big help.

[SzChristie]

@itsmexarli Your first question is maybe a difficult one, because I didn't find anything about this, sorry! Yes, it has 4 stages: 1. The early onset stage, 2. The rapid destructive stage, 3. The plateau, 4. The late motor deterioration stage. I hope, I could help a bit!

[Mzkikiwilcoxson90]

I anit being mean but why is she doing that wit her handz??

[SzChristie]

@Mzkikiwilcoxson90 Because she can't coordinate her movements properly.

[ByeByeBelly]

I work in disability support with a 40 year old woman with Rett syndrome. She is non verbal, does not communicate in any way, doesn't look at you etc. The only thing she does is the hand movements, touching her mouth and will open her mouth to eat. Can anyone tell me how capable she is of perception, thoughts etc? She doesn't smile or anything? Is it likely she is totally unaware of her surroundings? No one at work can give me a clear answer... thanks

[SzChristie]

@ByeByeBelly Unfortunately I don't know anybody with Rett Syndrome, but I have two friends with Cerebral Palsy. Maybe it's a bit similar because they can't speak or coordinate their movements, but they went to a special school. One of them talk with Bliss symbols and the other one has a manager calculator. They have feelings even one of these people has a healthy husband who always knows what she wants. Perhaps, Wikipedia can help you better! :)

[JohnnyX1239]

@ChristinePadillaELA Like most mental disorders, it doesn't run in families.

[Rettsis]

I have a sister who has Rett syndrome i'm 11 and i think she's the prettiest girl in the world for an older sister!

[Rettsis]

@Mzkikiwilcoxson90 in a way you are being mean! she's ringing her hands! its in rett syndrome. If she's doing something with her hands that means it has to do with the disorder!

[motapata]

@roxerka

poor us who have become slaves in this world and can not appreciate freedom of these innocent care free children..

at least their parents have something great and precious to live their life for

if this world is still spinning its because of these innocent children who always remain innocent..

[Sheri451]

@BakerBrownies Thank You, and thanks for responding to me.

[BakerBrownies]

@Sheri451 I wish that was the way everyone was brought up, the world would be a much nicer place 

[Sheri451]

@BakerBrownies That's okay. Yes I care for everyone. I was taught from the time I can remember to treat evryone with respect and treat them the way you are treated. I grew up with children with mental disabilities and played with them just like my other friends, To me , they were just another child. I saw nothing wrong with them, The 3 year old I care for goes to the girls house with her Mother sometimes, she loves the girl. Her Mom says she hugs and kisses Maria.

[BakerBrownies]

@Sheri451 no no, you didn't offend me at all! i can understand how very difficult it is caring for a young person with a serious disability i just like to spread the message as often as possible to have a positive look towards people with disabilities Despite this you seem like an incredibly loving caring person whom im sure has the up most respect for those living with serious learning/physical disabilities i was by no means trying to say you had offended me, im sorry if it came across that way

[Sheri451]

@BakerBrownies I'm sorry I said that. I just know about the young girl my 3 year old I baby sit for Mom cares for. She's 15 and walks on her tip toes, She can't talk, or feed herself. She has seizures and has been hospitalized four times since July of this year. They thought they were going to lose her. I'm glad your brother is a grown man. I'm glad he's doing good. I thought they didn't live to ba an adult. I'm very sorry I offended you. Please forgive me.

[BakerBrownies]

@Sheri451 Although i can understand the rational behind you thinking its a very sad thing it is not, my brother is first and foremost my brother he just happens to have a disability just like i am a person who happens to have brown hair, it does not define him or make him who he is, he leads a happy and fufilling life despite his many disabilities i think this is an important message to be spread