Tag Archives: Hand Accounts

Question?: Rett Syndrome Research

Sandy asks…

rett syndrome-please help!?

Hi all> I asked this question before but didnt get any responses

Im doing some research on the genetic disorder Rett Syndrome (RS) & I am looking for some first hand accounts of the early stages
Ive frequented IRSF & MANY other rett syndrome pages but I am really looking for some information from people who have dealt with it on a hands on basis>
My biggest area of interest/curiosity is about the first “signs”

what were your first clues that something wasnt right
was it drawn out or did it just seem to happen overnight

admin answers:

I never had it but wanted to help. This is what my research came up with,
Stage I, called early onset, generally begins between 6 and 18 months of age. Quite frequently, this stage is overlooked because symptoms of the disorder may be somewhat vague, and parents and doctors may not notice the subtle slowing of development at first. The infant may begin to show less eye contact and have reduced interest in toys. There may be delays in gross motor skills such as sitting or crawling. Hand-wringing and decreasing head growth may occur, but not enough to draw attention. This stage usually lasts for a few months but can persist for more than a year.

Stage II, or the rapid destructive stage, usually begins between ages 1 and 4 and may last for weeks or months. This stage may have either a rapid or a gradual onset as purposeful hand skills and spoken language are lost. The characteristic hand movements begin to emerge during this stage and often include wringing, washing, clapping, or tapping, as well as repeatedly moving the hands to the mouth. Hands are sometimes clasped behind the back or held at the sides, with random touching, grasping, and releasing. The movements persist while the child is awake but disappear during sleep. Breathing irregularities such as episodes of apnea and hyperventilation may occur, although breathing is usually normal during sleep. Some girls also display autistic-like symptoms such as loss of social interaction and communication. General irritability and sleep irregularities may be seen. Gait patterns are unsteady and initiating motor movements can be difficult. Slowing of head growth is usually noticed during this stage.

Stage III, also called the plateau or pseudo-stationary stage, usually begins between ages 2 and 10 and can last for years. Apraxia, motor problems, and seizures are prominent during this stage. However, there may be improvement in behavior, with less irritability, crying, and autistic-like features. An individual in stage III may show more interest in her surroundings, and her alertness, attention span, and communication skills may improve. Many girls remain in this stage for most of their lives.

The last stage, stage IV — called the late motor deterioration stage — can last for years or decades and is characterized by reduced mobility. Muscle weakness, rigidity (stiffness), spasticity, dystonia (increased muscle tone with abnormal posturing of extremity or trunk), and scoliosis (curvature of the spine) are other prominent features. Girls who were previously able to walk may stop walking. Generally, there is no decline in cognition, communication, or hand skills in stage IV. Repetitive hand movements may decrease, and eye gaze usually improves.

Hope it helps.

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Question?: Rett Syndrome Research

Thomas asks…

rett syndrome – pleaes help!!!!!!!!?

Hi all> I asked this question yesterdaybut got very few responses – Most that did respond gave me generic websites with a laundry list of symtopms that I am already aware of
I AM LOOKING FOR PERSONAL ACCOUNTS PLEASE
Im doing some research on the genetic disorder Rett Syndrome (RS) & I am looking for some first hand accounts of the early stages
Ive frequented IRSF & MANY other rett syndrome pages but I am really looking for some information from people who have dealt with it on a hands on basis>
My biggest area of interest/curiosity is about the first “signs”

what were your first clues that something wasnt right
was it drawn out or did it just seem to happen overnight
PLEASE DONT COPY & PASTE INFO FOUND ON RETT SYNDROME SIGHTS!!! IF THAT WERE WHAT I WERE LOOKING FOR I COULD DO IT MYSELF!

admin answers:

I’m sorry that you haven’t found much help here- why not find an internet forum for Rett Syndrome? I’m sure you’d get a lot more informative answers. Perhaps join CafeMom and find a Rett Syndrome group. Or poll some people on the IRSF website?

You’re at a generic internet forum at the moment, it might be tough to come across people who have experienced a very specific illness. Try going to a more specific internet forum for more information.

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Question?: Rett Syndrome Research

Mark asks…

rett syndrome?

Hi all>
Im doing some research on the genetic disorder Rett Syndrome (RS) & I am looking for some first hand accounts of the early stages
Ive frequented IRSF & MANY other rett syndrome pages but I am really looking for some information from people who have dealt with it on a hands on basis>
My biggest area of interest/curiosity is about the first “signs”

what were your first clues that something wasnt right
was it drawn out or did it just seem to happen overnight

admin answers:

I worked with a child that had RS and her parents told me she was originally diagnosed with CP. It was very difficult to tell the difference between the two.So it was drawn out. The little girl was 2 1/2 before she was properly diagnosed. One main difference between CP & RS is that with CP when you learn something you keep the knowelege and remember things, with RS you can learn it and loose it. This little girl I worked with could not walk or talk but she could feed herself with her hands and crawl a little. By the time she turned 5 she had lost everthing she had gained. She could no longer swallow her food feed herself or crawl. Her Dr had to put a G button in to do tubal feedings and then she was put in a kid cart because she couldnt get around on her own. I hope I helped but this is the only knowlege I have of RS….

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Question?: Rett Syndrome Research

Linda asks…

rett syndrome?

Hi all>
Im doing some research on the genetic disorder Rett Syndrome (RS) & I am looking for some first hand accounts of the early stages
Ive frequented IRSF & MANY other rett syndrome pages but I am really looking for some information from people who have dealt with it on a hands on basis>
My biggest area of interest/curiosity is about the first “signs”

what were your first clues that something wasnt right
was it drawn out or did it just seem to happen overnight

admin answers:

I have only dealt with a child that was in Stage III. I was a special education worker in a middle school a few years ago. We had one case of Rett in our school. I worked with the child very closely for a year and then was reassigned to other duties. I stilled worked with her, but a much small amount for the other 3 years she was with us. I don’t know how much I can help. However, if you have some specific questions you can contact me and I would try to help.

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Question?: Rett Syndrome Pictures

Mary asks…

rett syndrome?

Hi all>
Im doing some research on the genetic disorder Rett Syndrome (RS) & I am looking for some first hand accounts of the early stages
Ive frequented IRSF & MANY other rett syndrome pages but I am really looking for some information from people who have dealt with it on a hands on basis>
My biggest area of interest/curiosity is about the first “signs”

what were your first clues that something wasnt right
was it drawn out or did it just seem to happen overnight

admin answers:

First signs were within the first couple of months of birth. She never cried or fussed to be held or for any attention at all. She stared and giggled at for hours at a picture, a fan, a blank spot on the wall. She was floppy…we noticed this at about 3-4 months. She has a twin that is normal, so we noticed all of these differences right away. She never hugged or held anyone tight, or cared who was holding her.

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