Rett Syndrome Community

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danijelaszili
moderator

European Rett Syndrome Congress in 2017

Dear Rett Community,

we would like to inform the Rett Syndrome community, that the German Rett-Syndrome Association will organize the next European Rett-Syndrome Congress (ERSC) . The Congress will be placed in Berlin from 02. – 04. November 2017.

During this event the German Rett-Syndrome Association will celebrate their 30th anniversary.

Further information will follow in due time.

Please save the date!

The contact person for the German Rett Association is:
Wilfried Asthalter
Coordinator for International Affairs
Elternhilfe für Kinder mit Rett-Syndrom in Deutschland e.V.
Hinter dem Hain 10
DE-34327 Körle
+49-5665-4833
w.asthalter@rett.de

agerwachsene@rett.de

www.rett.de

Rett Syndrome Network

Hello. I am the father of a girl who is suffering from Rett Syndrome. I am awaiting an answer from the genetic research but other possibilities, simpler, could be within our reach and would also be worth exploring. We are all experts in our daughters. If we mutualized our experiences, your daughter and mine will have everything to gain.
I wish to create together with you a network to make our daughters move forward.
My phone number is on the website below. Call me, so you will understand better how sincere I am and my motivation as a dad.
http://parileitao.wix.com/reseaurett
I would appreciate greatly if you could forward this to the largest number of people. Thank you. Jérôme

Notice: This text content has been translated automatically by a third-party service.

martacampabadal
moderator

Rett Syndrome community map

Hello everyone!

We are very happy to announce a new update of the community.

Maybe you have already checked out that in the Members section there is a new world map. It is a more visual and fast way to contact other community members.
https://www.rareconnect.org/en/community/r...

3 important things:

1) To appear on the map you only have to edit your profile and add the location. If you already have done it, you can also specify your city, even zip code.
https://www.rareconnect.org/en/community/n...

2) Unless you have the profile marked as public, the information on the map is only visible for members that have registered to the community. This means that visitors may see the map but not the spots and the links.

3) If you wish, you can also make your spot in the map only visible for your friends within the community. This option can be changed always from your profile.

If you have any question, leave me a comment below!

Thanks Marta, this is great :-)

Concerned Mom Of A Beautiful Little Girl

Hello Everyone,

I would basically like to know if you feel I should be pushing for my daughter to be tested for Rett Syndrome. I will start by telling you her story so far in life. Laila was born on Feb 7, 2014. She is now 18 months old and just a joy to be around!

At 6 months old she has a bout of Left sided Hemi paresis. She lost the use of her left side for about 20 minutes. Her General Doctor referred her to a neurologist and she was seen the next day. They did there exam and started testing. About 1 week after the hemiparesis she started having myoclonic jerks, she was hospitalized for 2 day and underwent a 24 hour EEG. The EEG was abnormal but she was not having seizure activity. The neurologist told us that Laila is at risk for seizures due to her EEG but at the time was not having them. She had a MRI, multiple blood labs and urinalysis all coming back normal. Fast forward a year to the last 2 weeks and Laila has started doing some odd things. She wrings her hands, brings them to her mouth and when she walks or runs she twirls them in circles out to the side and above her body. She also has random tremors that occur a couple of times a day. She has not lost hand function that I have noticed, however when she goes to grab things sometimes she will stop before grabbing it and pull her hands back hold them and than try again. Sometimes it takes her up to 3 try's before she can grab it. Sometimes she just gives up. She has also started sticking her tounge in and out consistently throughout the day. She has always been behind in her milestones but has always got there. She started walking at 14 months and still does so. I have not seen any regression in her at all. There for am unsure as to if I should push to have her tested for Rett's. Her general doctor has referred her to a pediatrician who we will see in 4 weeks. I was just curious if any of your daughters had these symptoms in Stage 1 of Rett's? Am I being ridiculous for thinking this? Thank you so so much for any advice you can give.

Jessica

Hello,

Her Ped appointment is not until March 11th so we are almost there :) So no news as of yet. She has stopped doing most of the hand movements the last 2 weeks, I am unsure now if I should even ask for the testing since she has stopped doing them. Her behaviour is quite worrying to me though. She is extremely anti social. She will only interact with very few people who are very close to her, if you are not 1 in 5 people expect to be be completely ignored by her. She seems to ignore us if we try talking to her or get her attention, and is very extreme in her reactions to all emotions. I am not sure if this is just normal toddler behaviour or something to be concerned about. I am not sure if I am even going to bring up rett syndrome at her appointment as I said the hand movements seem to have stopped for now. She is still doing the tounge thing and holds her hands down by her back and arches quite a bit.

I should also note we went for her 18 month vaccinations and there they do a growth chart from when she was a newborn. Her head circumfrance went on a nice curve and at 12 months started to slow down now it is on a strait line instead of a curve. The nurse said not to be to concerned with it but I know that slowed head growth is a indicator for rett also. Just so confused and don't even no where to go with this :(

danijelaszili
moderator

I am curious to see what will Her Ped say.
You should trust your instincts. If you feel that something is wrong and would like to find out what then some testing would be someting that can not be avoided.
If you can relax and enjoy your time with her then maybe you should just do it. In the next 6 months it will be much more clear if there is a problem.

thomasbertrandrett
moderator

8th World congress on Rett syndrome 13-17 May 2016: Registration is still open!

Message from the congress' organizing committee:

Dear Friends, please note that the registration for the World Congress on Rett syndrome to be held on 13-17 May 2016 in Russia, Kazan continues.
All the necessary information can be found at worldcongress2016.rettsyndrome.ru
Kazan is a beautiful and hospitable city with 1000 years of history. Many cultures, religions, traditions meet here in Kazan: http://old.kzn.ru/eng/ Congress organizers offer to stay at the Riviera Hotel, which will host scientific and practical session of the Congress. This comfortable hotel offers rooms of different levels, and also a free ticket to one of the largest water parks in Europe http://www.kazanriviera.ru/
The program of the Congress includes scientific sections, practical sections, and cultural program. During the Congress, you will be able to listen to lectures and presentations on studies of Rett syndrome, meet with specialists, ask them questions. During round tables for parents you will be able not only to get information about the methods of training and rehabilitation, but also to meet each other, to communicate with families and with children. 58 Russian families from 20 cities in Russia have alredy signed up for the Congress, the parents of 17 girls with Rett syndrome have informed us that their girls will also become the members of the Congress. We are trying very hard to make the Congress comfortable, informative and educational event.
We are preparing the Congress with the help of the Ministry of Health and the municipal authorities, as well as rettsyndrome.eu and rettsyndrome.org
Congress Languages: English and Russian.

Have you ever been a member of the World Congress of Rett syndrome? Have you ever visited Russia? You have a chance to do it! Register now: http://worldcongress2016.rettsyndrome.ru/en/
If you have any questions please contact us: rttcongress2016@gmail.com

Welcome to Kazan to the World Rett Syndrome Congress: together above the dream!

robpleticha
moderator

4th European Congress on Rett Syndrome – Full report

The 4th European Congress on Rett syndrome took place in Rome during the last weekend of October. More than 400 participants were present.

Read the full report here: http://www.rettsyndrome.eu/news/4th-europe...

martacampabadal
moderator

Hi,

You'll find more information and a couple of photos in this article: https://www.rareconnect.org/es/community/s...

stellapeckary
moderator

Einen Bericht über den Congress in Rom in Deutscher Sprache gibt es auf:

http://www.rett-syndrom.at/bericht-4-ersc-...

mit vielen Fotos

martacampabadal
moderator

Emerging Research on Treating Seizures with CBD (Cannabidiol)

Listed here are a few recent publications and a brief summary of relevant findings.

https://mecp2.wordpress.com/2015/10/07/eme...

stellapeckary
moderator

Cannabidiol as an alternative medicin against epilepsy was also mentioned at the ERSC in Rome. Thank you for the links.
LG Stella