FAQ - Rett Syndrome
(Powered by Yahoo! Answers)

Rett Syndrome?


My little sister who is 9 has Rett Syndrome. Her doctors want to do 3 surgeries. One to put rods in her back for her scoliosis, one to fix her heel cords, and one to take out her tonsils for her sleep apnea. If anyone has any information or has a child with Retts that has gone through these procedures or has tried other options please let me know. We really want a second opinion on these operations, but we would like information from people who has a daughter with Retts that has gone through this.
----------

Hello...my 3 1/2 year old daughter has Rett Syndrome. Luckily she doesn't have scoliosis yet. From other parents I have talked to, surgery for scoliosis is somewhat common but I think its mostly done when it is affecting their ability to breathe. The other 2 surgeries I have never heard of being done on girls with RS. My daughter has problems with her ankles that we brace. If there is tightening I have heard of parents trying botox with good results. But sleep apnea is pretty common in RS I think also...yet I have never heard of tonsils being taken out. You have to be VERY careful with surgeries because girls with RS have difficulties with pneunomia, the anesthesia, recovery, and seizures tend to increase with the pain from it. Are you on the Rettnet? If not, that is your best source of answers because it is a huge community of parents, therapists, Drs, etc. That is who you should be asking those questions. You can sign up for it at www.rettsyndrome.org. Best of luck to you and your sister!  (+ info)

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
----------

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....  (+ info)

Rett syndrome?????


I am doing a personal survey on Rett syndrome. Has anyone ever heard of this disease? I would like to have a count of how many girls are affected, what states, and what ages. A friends daughter has been diagnosed, I've read Julia Roberts web page on the Angels, its very interesting.
----------

Hello...my 3 1/2 year old daughter has Rett Syndrome. It affects about 1 in 10,000-15,000 girls. There are girls with RS in every state. Please email me or have your friend email me and I will answer any questions you have.  (+ info)

Is it common for girls with Rett Syndrome to get bald spots?


My sister suffers from Rett Syndrome, a neurological disorder seen almost exclusively in females. She has a bald patch in her hair. It can be covered up. However, lately it has been getting worse. I am very concerned. It has been checked at the doctor and he didn't have much to say. Is there a conncection between Rett Syndrome and bald spots? Also, is there anything we can do to treat this?
----------

Does she pull at her hair, or is she non mobile & when she sleeps , sleeps on the side of her head with the bald patch?

Is she still able to self or be mouth feed? is she getting the recommended daily calorie intake?

sorry about your sister, I do believe they will find a cure very soon =) & have you heard about the www.rsrt.org. where people can sponsor a drug already approved to see if it will help Rett Syndrome Patients. I have hope in this! They just discovered that a drug manufactured for Lukemia patients has had the potential of decreasing & in some cases reversing sympotms in MS in people
I know its a little off topic(sorry) but it gives me hope that something like this will happen for Retts too: here is the article if you are interested

http://news.yahoo.com/s/afp/20081023/ts_afp/britainscienceresearch;_ylt=AhlqFuCtNCTYR_Oobpp0XCCGWo14  (+ info)

I need range of motion or leg and ankle stretch tips for a 9 year old girl with Rett Syndrome.?


I work with a little girl who has Rett Syndrome, and her leg muscles are generally very tight and she has problems walking, which is not uncommon for children with this disorder. I'd like to find some stretches that would be beneficial to her, and how to apply these stretches correctly.
----------

I think your best bet is to go on the Rettnet (sign up at www.rettsyndrome.org) where there are hundreds of parents and therapists with great advice.  (+ info)

Do you have a child with mild Rett Syndrome?


I am looking for some information from parents who have a child diagnosed with mild Rett Syndrome. Specifically what their symptoms(for lack of a better word) are. If you would prefere to contact me directly, that would be fine. Thanks for your time!
----------

I don't have a child with Rett but I can recommend a website, see source below.

They have an online forum which may be very beneficial to you.

Good luck and hugs.  (+ info)

Im doing a paper on Rett Syndrome and would like to ask some questions.?


1.) How does the problem with the DNA affect the function of the cell?
2.) How is protein synthesis affected?
3.) What symptoms do the victims of the disorder experience?

I am looking to interview someone that knows someone with Rett Syndrome.

Thank you.
----------

1) The MeCP2 gene essentially "shuts off" the cell, after it has done it's job. With RS, the mutation doesn't allow this to happen.

2) I started to type this out, but it's much more informative here:

http://www.rettsyndrome.info/rettcause.html

This will explain it in great detail.

3) Girls with Rett Syndrome often present with repetitive hand movements, which is often called the "hallmark" of RS. My daughter repeatedly "knocks" on one hand with the other.

Most develop normally for the first 6-18 months of life, then begin regressing. Many of them have seizures, and are unable to walk (though, some can). They lose the ability to purposely use their hands, and require care in all areas of life.

I'm going to link my daughter's video. It gives information about RS. At the end, is our email address. If you still need to interview someone, feel free to send an email.

They changed the music on her video :( However, it's still useful.
http://www.youtube.com/watch?v=7S2k2QTMqm4  (+ info)

Does anyone know where I can find information on males with Rett Syndrome?


I need information on how it affects their physical health. And most importantly there bones. I only need this information on males, and not females. Since males don't usually survive birth if they have retts then it is making it hard to find information on it. Please help?
----------

Hello...my daughter has Rett Syndrome so I know a little bit. Males usually do survive birth but don't typically live for more than a year. Males who have an extra X chromosome (XXY instead of XY) are like girls with RS and have a comparable lifespan and symptoms. I think you are going to have a hard time finding info on bone denisity. I don't think it is publicly available even on the female population. Research is still ongoing and the majority of it just started in '99, so I doubt you will find any info. My daughter is part of the RS natural history research and they have not published the info yet, but bone density is one of the things it will cover. But you can try searching these sites: www.rettsyndrome.org and www.rsrf.org  (+ info)

i am going to report about RETT syndrome and hoping that i can have a good testimonial from people who knows?


someone who has RETT syndrome... It's for my human genetics course and I want it to be graded "excellent". please send me an e-mail. help me. thank you and God bless to all especially to those who have Rett syndrome!
----------

My 4 yr old daughter has Rett Syndrome. Go ahead and send your questions to me and I will help as much as I can.  (+ info)

Do you know any famous people who have had Rett Syndrome?


Need this asap its for a school project!!! The sooner then better!
----------

  (+ info)

1  2  3  4  5  

Leave a message about 'Rett Syndrome'


We do not evaluate or guarantee the accuracy of any content in this site. Click here for the full disclaimer.