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Transcript of Interview Questions
USED TO HELP
The questions were asked direct to Kashish's mom and one of their close helpers and good family friend.
Wednesday, October 1, 2014
Vol XCIII, No. 311
QUESTIONS THAT WERE ASKED...
This is her walk in which she is able to stand up on her own
Kashish was born with Rett Syndrome. She can't talk or walk. She can't respond well either. The only movement that she can do is open her hands, move her head and flail her feet. Yet you can tell when she is happy, sad, mad, or when she wants to talk. The responses aren't clear and sometimes I even thought that she was crying when she was actually laughing. We do these exercises to help her, which you will learn about later. Honestly, it is upsetting to see that she can't do anything and it is sad to know that later in her life she won't be as mobile.
This is what she uses to go places. It is like a wheel chair.
AND I END WITH...
This piece is very important too. it is a massage table on which we help her stimulate her body.
This is an exercise, called patterning, that we do to help stimulate her body and help her feel the sensation of crawling.
Is it hard to manage at home?
On average how many seizures does Kashish get?
What do you see in Kashish’s future?
How long do you believe it will take to fully develop Kashish’s motor skills?
Are there any side effects for the medication that Kashish takes?
Do you feel that Kashish has improved her motor skills throughout the years? If so, by how much?
was originally termed as cerebroatrophic hyperammonemia
it is a rare genetic postnatal neurological disorder of the grey matter of the brain
almost exclusively affects females but has also been found in male patients.
people with Rett syndrome are prone to gastrointestinal disorders
up to 80% of the people diagnosed have seizures.
they typically have no verbal skills
about 50% of individuals affected do not walk.
Scoliosis, growth failure, and constipation are very common and can be problematic.
Yes, sometimes it does get hard.
Hopes to see her more responsive.
Doesn't believe they will ever be fully developed, but does beleive there will be improvements.
There are side affects such as the recent ( and sudden) weight gain.
Yes, she has. Now she is able to open her hands and move them slightly, and she is more responsive and alert of what is going on around her.
Rett syndrome is a devastating disability, which for some can never be cured. People who are diagnosed with rett syndrome, have to face many challenges throughout the course of each day. Also their care takers, parents/guardians, are also faced with many difficulties in order to help the person. Its not always easy and nobody can promise that it will be, but with positive support and dedication coming from family and friends, it could be a little less hard to get by.