cdkl5amberandus.blogspot.com
CDKL5, Amber and Us: December 2011
http://cdkl5amberandus.blogspot.com/2011_12_01_archive.html
CDKL5, Amber and Us. There is nothing that can prepare you for having a child with a disability and there is nothing that can prepare you for having a child with CDKL5. Friday, 16 December 2011. I haven’t posted in a couple of weeks! Amber had her 7 day heart monitoring and we haven’t heard anything as yet, although we had the clinic letter which I would say has sent the shivers through me to say the least. She is up and down health wise, and it really is a mystery. I mean I blame Disney! Amber and I wil...
cdkl5amberandus.blogspot.com
CDKL5, Amber and Us: Making "Strides"
http://cdkl5amberandus.blogspot.com/2012/02/making-strides.html
CDKL5, Amber and Us. There is nothing that can prepare you for having a child with a disability and there is nothing that can prepare you for having a child with CDKL5. Sunday, 26 February 2012. A lot has happened since my last post. Time I thought I would write one, something else cropped up and I thought I would wait! He also conducts a lot of research, and I hope he will find the features of CDKL5 interesting, it is very likely that he will not have met a child with CDKL5. The stress of trying to get ...
cdkl5amberandus.blogspot.com
CDKL5, Amber and Us: CDKL5 UK Launch!
http://cdkl5amberandus.blogspot.com/2011/11/cdkl5-uk-launch.html
CDKL5, Amber and Us. There is nothing that can prepare you for having a child with a disability and there is nothing that can prepare you for having a child with CDKL5. Friday, 18 November 2011. Last Saturday I had the honour and privilege to launch CDKL5 UK at the Rett UK Family Weekend in Northampton. Also I was able to launch CDKL5 UK along with Sarah, my co-parent in this endeavour. CDKL5 UK is so lucky to have such a special band of parents that are dedicated in uniting together for a common cause, ...
cdkl5amberandus.blogspot.com
CDKL5, Amber and Us: February 2012
http://cdkl5amberandus.blogspot.com/2012_02_01_archive.html
CDKL5, Amber and Us. There is nothing that can prepare you for having a child with a disability and there is nothing that can prepare you for having a child with CDKL5. Sunday, 26 February 2012. A lot has happened since my last post. Time I thought I would write one, something else cropped up and I thought I would wait! He also conducts a lot of research, and I hope he will find the features of CDKL5 interesting, it is very likely that he will not have met a child with CDKL5. The stress of trying to get ...
cdkl5.com
International Foundation for CDKL5 Research
http://www.cdkl5.com/Default.aspx
Dedicated to finding a cure for children affected by CDKL5. Research Grants and Updates. Roadmap to a Cure. CDKL5 International Registry Database. CDKL5 Centers Of Excellence. The beginnings of CDKL5. 2nd Annual Toasting Tanner. IPS Disease Modeling and Drug Development in CDKL5. Dr Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has . Learn More. The IFCR is a proud partner of NORD. How are you raising awareness? CDKL5 Disorder - An Introductory Guide.
cdkl5.com
Resources: International Foundation for CDKL5 Research
http://www.cdkl5.com/For-Families/Resources.aspx
Dedicated to finding a cure for children affected by CDKL5. Research Grants and Updates. Roadmap to a Cure. CDKL5 International Registry Database. CDKL5 Centers Of Excellence. The beginnings of CDKL5. 2nd Annual Toasting Tanner. IPS Disease Modeling and Drug Development in CDKL5. Dr Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has . Learn More. Caley J. Brown Foundation. L'Albero di Greta ONLUS - Associazione Italiana CDKL5. NIH Office of Rare Diseases.
mariacarolinacdkl5.blogspot.com
Maria Carolina e CDKL5: CDKL5
http://mariacarolinacdkl5.blogspot.com/p/cdkl5.html
Maria Carolina e CDKL5. Nossa luta contra essa doença rara. CDKL5 é uma desordem genética rara que resulta no aparecimento precoce, na dificuldade para controlar convulsões e no comprometimento grave do desenvolvimento neurológico. Existem menos de 200 casos em todo o mundo, no entanto, mais e mais crianças estão sendo diagnosticadas com CDKL5. Para maiores informações http:/ www.cdkl5.com/. Compartilhar com o Pinterest. ESTUDO DE DOENÇAS RARAS. 15 de dezembro de 2012 18:25. Visualizar meu perfil completo.
mariacarolinacdkl5.blogspot.com
Maria Carolina e CDKL5: Quem somos nós
http://mariacarolinacdkl5.blogspot.com/p/quem-somos-nos.html
Maria Carolina e CDKL5. Nossa luta contra essa doença rara. Como diz o resuminho do Blogger:. Sou a Carolina. Mãe 24 horas, esposa e dona de casa. Gremista fanática. Faladeira, ciumenta e apaixonada pela vida! Minha filha, Maria Carolina, foi diagnostica com a CDKL5 em setembro de 2010, depois de 3 anos incansáveis de pesquisas e exames. Hoje, temos uma vida feliz e um único objetivo: aproveitar cada momento que temos com a Maria Carolina! Compartilhar com o Pinterest. 28 de abril de 2014 17:32. PANELATE...
mariacarolinacdkl5.blogspot.com
Maria Carolina e CDKL5: Medicação Utilizada
http://mariacarolinacdkl5.blogspot.com/p/medicacao-utilizada.html
Maria Carolina e CDKL5. Nossa luta contra essa doença rara. A Maria Carolina já tentou todos esses remédios pra tentar controlar as crises convulsivas. Uns tiveram efeitos colaterais indesejáveis e outros, agravaram as crises. Atualmente ela toma o Sabril, o Keppra e o Sonebon. Às vezes umas gotinhas de Rivotril, quando está muito agitada. Hoje, 03/10/2014 Maria Carolina está tomando Sabril, Gardenal e Nitrazepan. Ainda continua tendo uma ou duas crises por dia! Valproato de Sódio (Depakene). Onde conseg...
cdkl5.de
CDKL5 im Alltag -
http://www.cdkl5.de/was-ist-cdkl5/alltagsgeschichten
Pflege- & Hilfsmittel. Pflege- & Hilfsmittel. Carolines CDKL5 im Alltag. Thedas CDKL5 im Alltag. Pauls CDKL5 im Alltag. Haben wir diejenigen Kinder vermerkt, deren Eltern die Angabe des Kreises, in dem sie wohnen, eingewilligt haben. Es gibt in Deutschland derzeit vermutlich ca. 30-40 betroffene Kinder mit CDKL5. Vielen Dank an Tina Zeidler für ihr “Ich-Buch” für unsere Kinder! Klicken Sie hier, um das Ich-Buch für CDKL5 zu herunterladen. Nützliche Tipps and Soziales rund um CDKL5. Erholung: Kur mit CDKL...
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