O Q. nasceu em Lisboa em 30 de Abril de 2008 e é um menino muito especial.

E é por ser especial que desde o primeiro dia que trabalha muito, que procuramos soluções, alternativas, pesquisamos, falamos e temos muita ESPERANÇA que um dia faça tudo o que os outros meninos fazem.

Por ser assim, te amamos e POR TI, Q. tudo fazemos.

sexta-feira, 17 de dezembro de 2010

Sudden Unexpected Death in Epilepsy: This rare disorder is a call to arms for doctors and patients to control seizures

John Travolta's 16-year-old son, Jett, who suffered from uncontrolled seizures, died suddenly on Jan. 2, 2009, while on vacation with his family in the Bahamas. After an autopsy, “seizure” was listed as the cause of death. Later that year, in another heart-wrenching case, Steve Wulchin went to wake his 19-year-old son, Eric, and found him lying on the floor of their home in Boulder, CO. Eric, whose last seizure was six months before, had died unexpectedly during the night.

These two high-profile cases have heightened public awareness of sudden unexplained death in epilepsy (SUDEP), a rare disorder responsible for 2 percent to 18 percent of deaths in people with epilepsy... (cont)



http://journals.lww.com/neurologynow/Fulltext/2010/06060/Sudden_Unexpected_Death_in_Epilepsy__This_rare.11.aspx

Speak Up: Rising Above Limits and Labels—I fulfilled my dreams in spite of a cerebral palsy

Free AccessAuthor InformationFrom 1993 to 1995, Shanna McCoy served on the Governor's Developmental Disability Planning Council for Arkansas, and is still a member of the Arkansas Disability Coalition.
My mother was the kind of woman you didn't want to say no to. When a pediatrician told her that I would never read, walk, or talk, my mother responded, “My daughter will be walking by the time I'm through.” It took me a long time to even sit up and stand on my own, but two and half years later, my mother was right. I was able to walk.
At the age of 18 months I was diagnosed with cerebral palsy. The cause: severe brain trauma from a forceps injury during birth. No one volunteered this information; a receptionist accidentally left my medical records on the desk and my mother decided to look through them.
But I never really accepted the fact that I was “Disabled” with a capital “D.” As a child, I convinced myself that I was an ordinary girl who possessed some extraordinary gifts.
Other people didn't see it that way. I was teased daily by other children in the small town in Arkansas where we lived. On the first day of first grade, I heard the teacher say to my mother, “She belongs in the retarded class.” My mother boldly replied, “She belongs in this class.” As the days progressed, I realized I could read better than any other kid in that room.
Image ToolsEvery day after school, I exercised, practiced reading, did my homework, and learned to walk—with the help of a 20-pound metal day brace and a 40-pound metal night brace. From the age of four to 13, my mother and I went through the same grueling ritual with the braces. We fought constantly. Often I would wait for her to fall asleep so that I could take the night brace off. In the morning, when I realized my mother had put it back on me in the middle of the night, I would throw a temper tantrum.
Even though I had cerebral palsy, I still had to perform daily chores around the house. And although it took me a long time to complete simple tasks, I thrived on the feeling of independence and accomplishment this gave me.
I moved on to the second-grade, then third, fourth, and fifth—in spite of the fact that my teachers and classmates often treated me unfairly and with cruelty. One teacher said to me, “Instead of your mother putting pretty bows in your head, she should have given you a brain.” My fifth-grade math teacher said she wasn't going to treat me special just because my mother insisted on “window dressing a retarded kid.” For nine long years my mother met with teachers, school board officials, and principals demanding that I not be judged unfairly on the basis of a physical disability and labelled “retarded.”
In junior high and high school, I began to make the honor roll. I joined the marching band and became heavily involved in speech and drama classes. When I was accepted into college, I was overjoyed. I had finally made it! Or so I thought.
During the winter of 1990, my mother passed away. I was devastated and told myself I couldn't finish college. But I reflected on her confidence in me over the years and finally earned my degree. It was the fulfillment of a childhood dream.
I have a child of my own now, a very bright 11-year-old boy named Justin Tyler Abraham. Doctors had told my mother that I would never be able to have a child, just as I would never be able to read, walk, or talk. Justin is a reminder of my mother's words—and her love.

http://journals.lww.com/neurologynow/Fulltext/2010/06060/Speak_Up__Rising_Above_Limits_and_Labels_I.22.aspx
E não é isto que queremos para os nossos filhos?

Proyecto Foltra - Defienden el tratamiento con hormonas para mejorar a los pacientes con daño cerebral

TODO Castilla y León - 10 de diciembre de 2010

El catedrático de Fisiología Humana de la Universidad de Santiago Jesús Devesa Múgica ha defendido este viernes en Salamanca el tratamiento con hormonas de crecimiento y melatonina unido a prácticas de fisioterapia, logopedia y terapia ocupacional para mejorar la calidad de vida de los personas con daño cerebral.
Así lo ha señalado en una rueda de prensa previa a su intervención en la Universidad de Salamanca (USAL), en la que ha explicado su Proyecto FOLTRA, Fe, Optimismo, Lucha y Trabajo, encaminado a la ayuda para la rehabilitación física e intelectual del paciente neurológico, con daño cerebral o periférico, congénito o adquirido.
Devesa Múgica ha sostenido que inició del programa debido a "la necesidad", tras su sufrir su hijo mayor un grave accidente de tráfico.
A él le aplicó "de forma empírica" todo lo que le había reportado la investigación realizada durante más de treinta años en hormona del crecimiento.
De este modo, logró sacarlo adelante y creó una fundación de ayuda a pacientes con daño cerebral, la cual ha logrado en seis años, según ha señalado, "un alto porcentaje de éxito".
No obstante, ha reconocido que no todos los enfermos se curan al cien por cien, pero "el 90 por ciento de ellos consiguen mejoras importantes en su calidad de vida".
Esta entidad atiende actualmente a más de 180 pacientes de forma directa, ha explicado el profesor, y a "otros tantos de forma indirecta", a través de convenios suscritos con entidades de Madrid, Canarias, Noruega, Italia, Hungría, Francia, Bolivia, Argentina, Uruguay, Estados Unidos y México.
El método puesto en marcha por Devesa Múgica se puede aplicar en pacientes que padecen desde "parálisis cerebral infantil hasta traumatismos craneoencefálicos, ictus o lesiones medulares".
Es "una combinación de factores de crecimiento neuronal y neuroprotectores sumado con fisioterapia, logopedia, neuroestimulación y terapia ocupacional".
En este sentido, ha mencionado a "la hormona de crecimiento y la melatonina fundamentalmente", como fármacos fundamentales, aunque "hay más".
En su opinión, "la hormona es más potente como neurorregenerador y la melatonina como neuroprotector".
No obstante, ha afirmado que el Proyecto FOLTRA no se aplica en la sanidad pública, debido a que "el coste de la hormona es muy alto" y si se pusiera en marcha este método, el sistema "se colapsaría en un plazo de dos meses".
En este sentido, ha señalado que el tratamiento supone unos 7.000 euros al año y los potenciales beneficiarios serían unos dos millones de los cuatro millones de personas que padecen discapacidad en España.
El Proyecto FOLTRA cuenta con la colaboración de grupos de investigación de la Facultad de Medicina de Santiago y del Hospital Clínico Universitario, así como de destacados especialistas médicos.

http://www.todocastillayleon.es/hemeroteca/defienden-el-tratamiento-con-hormonas-para-mejorar-a-los-pacientes-con-dano-cerebral-9294.aspx

Primeira Dama visita AFID


A Primeira Dama visitou ontem a AFID e na reportagem fez questão de referir a importância da Intervenção Precoce.
O Q. deu o ar da sua graça e até lhe disse o seu famoso e alegre "buuuu".
É com satisfação que fazemos parte deste projecto.

http://www.tvamadora.com/Video.aspx?videoid=1101

quinta-feira, 16 de dezembro de 2010

Proyecto Foltra - No podemos

...Hay un teléfono con más de 7000 llamadas pendientes de contestar. Hay más de 3000 informes, enviados por correo o por fax, pendientes de ser valorados, y hay más de 8000 pacientes en lista de espera para ser atendidos...


http://www.proyectofoltra.com/index.php/es/noticias/374-no-podemos

Proyecto Foltra - Buenas noticias a pesar de todo

...PCIs que dejan de serlo, total o parcialmente; niños que comienzan a ver por primera vez en sus vidas, así lo indican los potenciales evocados visuales y las pruebas de visión; una joven que también comienza a ver tras 14 años de ceguera por un traumatismo cráneo-encefálico con importante afectación de la corteza occipital (donde se reciben las señales visuales enviadas desde la retina); comienzo de la marcha y recuperación de la simetría facial en un joven con un grave daño cerebral tras accidente de tráfico; informes de revisión hospitalarios de niños con PCI en los que se evidencian las mejorías obtenidas; registros electro-encefalográficos en los que (sorprendentemente...) desaparecen las actividades epilépticas; e informes de fisioterapeutas y logopedas de un importante hospital insular dedicado a la asistencia de niños con déficits, en los que se constata que lo que era un síndrome sin tratamiento está ya dejando de serlo (aparición de movimientos oculares donde antes era la mirada fija, cierre de párpados antes imposible, movimientos linguales de una lengua paralítica, y simetría facial antes inexistente). Motivos más que suficientes para estar más que satisfechos y animados a continuar pese a la presión...

http://www.proyectofoltra.com/index.php/es/noticias/375-buenas-noticias-a-pesar-de-todo

Testimonio de una pediatra

Miércoles 15 de Diciembre de 2010

Lo acabamos de recibir, es el testimonio de una pediatra que ha valorado a 4 niños con parálisis cerebral infantil a tratamiento. Así dice, respetando como siempre la privacidad:
Jesús, anteayer vi por segunda vez a 4 niños de Foltra. Sus avances han sido espectaculares, especialmente el que peor estaba, I.D, ha pasado de venir totalmente rígido y desconectado a venir abrazado a su madre, sonriendo y "alucinado con la nevera y el horno". También los demás han mejorado muchísimo.
Estoy encantada de participar en este proyecto. Mil gracias.

Feliz Navidad a todos, un fuerte abrazo,

http://www.proyectofoltra.com/index.php/es/noticias/378-testimonio-de-una-pediatra

Fundação AFID


Terapia Sacro Craniana

A Terapia Sacro Craniana foi desenvolvida pelo médico e osteopata americano Dr. John Upledger, após um estudo científico intensivo entre 1975 e 1983, enquanto professor de biomecânica e investigador clínico na Universidade Estatal de Michigan nos Estados Unidos da America.

A Terapia Sacro Craniana é uma terapia manual, muito suave, que tem como objectivo avaliar e melhorar a função fisiológica do sistema sacro craniano, um sistema fisiológico do qual fazem parte as membranas cranianas e o liquido cefalo raquidiano que envolve e protege o cérebro e a espinal medula. Este sistema mantém uma relação entre o sacro e o cranio através do tubo dural e está exposto a tensões anormais que podem causar alterações em várias partes do corpo.

Usando um toque muito leve, de uma maneira geral não superior a 5 gramas, o terapeuta sacro craniano pode libertar certas restrições no sistema sacro craniano e dissipar os efeitos negativos do stress sobre o sistema nervoso central, facilitando o processo de recuperação do próprio sistema de auto-regulação, permitindo assim que este faça as suas próprias correcções quando e onde estas sejam necessárias, sem decerto modo contrariar o processo fisiológico normal.

A terapia Sacro Craniana está indicada em qualquer faixa etária e raramente tem contra indicações. Em doentes de idades mais avançadas esta terapia pode melhorar a mobilidade funcional e proporcionar mais energia.

A Terapia Sacro Craniana é cada vez mais usada como terapia preventiva por ser benéfica no apoio e reforço às resistências naturais contra as doenças e é eficaz numa grande variedade de problemas médicos associados à dor e à disfunção, incluindo:

- Enxaquecas,
- Dores de cabeça,
- Dores musculares crónicas da coluna vertebral,
- Dificuldades respiratórias,
- Dificuldades de coordenação motora,
- Cólicas
- Autismo
- Disfunções do sistema nervoso central
- Problemas músculo esqueléticos
- Problemas generalizados nas crianças
- Dificuldades na aprendizagem
- Fadiga crónica, dificuldades emocionais
- Problemas relacionados com stress
- Problemas do tecido conjuntivo
- Fibromialgia
- Disfunções temporo-mandibulares
- Disfunções neurovasculares e do sistema imunitário, etc.

Um aspecto importante da terapia sacro craniana é o facto de esta poder ser conjugada com outras terapias ou usada individualmente, tendo sempre como objectivo o bem estar do doente. Cada vez mais chegamos à conclusão de que nenhuma terapia é perfeita, em muitos casos umas funcionam melhor do que outras, e em alguns casos melhor do que noutros, portanto, quando se pode oferecer uma terapia integrada a recuperação do doente é sempre mais eficaz.

http://upledgerinstitute.pt/craniana.htm

segunda-feira, 6 de dezembro de 2010

Nighttime sleep found beneficial to infants' skills


November 16, 2010

At ages 1 and 1-1/2, children who get most of their sleep at night (as opposed to during the day) do better in a variety of skill areas than children who don't sleep as much at night.

That's the finding of a new longitudinal study conducted by researchers at the University of Montreal and the University of Minnesota. The research appears in the November/December 2010 issue of the journal Child Development.

The study, of 60 Canadian children at ages 1, 1-1/2, and 2, looked at the effects of infants' sleep on executive functioning. Among children, executive functioning includes the ability to control impulses, remember things, and show mental flexibility. Executive functioning develops rapidly between ages 1 and 6, but little is known about why certain children are better than others at acquiring these skills.

"We found that infants' sleep is associated with cognitive functions that depend on brain structures that develop rapidly in the first two years of life," explains Annie Bernier, professor of psychology at the University of Montreal, who led the study. "This may imply that good nighttime sleep in infancy sets in motion a cascade of neural effects that has implications for later executive skills."

When the infants were 1 year old and 1-1/2 years old, their mothers filled out three-day sleep diaries that included hour-by-hour patterns, daytime naps, and nighttime wakings. When the children were 1-1/2 and 2, the researchers measured how the children did on the skills involved with executive functioning.

Children who got most of their sleep during the night did better on the tasks, especially those involving impulse control. The link between sleep and the skills remained, even after the researchers took into consideration such factors as parents' education and income and the children's general cognitive skills. The number of times infants woke at night and the total time spent sleeping were not found to relate to the infants' executive functioning skills.

"These findings add to previous research with school-age children, which has shown that sleep plays a role in the development of higher-order cognitive functions that involve the brain's prefrontal cortex," according to Bernier.

http://www.cnsfoundation.org

Plasticity supports cognitive recovery after brain damage

November 3, 2010

New research provides fascinating insight into mechanisms that underlie recovery after damage to a region of the brain important for memory and attention. The research, published by Cell Press in the November 4th issue of the journal Neuron, highlights the role of undamaged portions of the brain that can "take over" and support the recovery of function.

Brain damage can have devastating consequences, depending on the location and severity of the injury. Damage to an area of the brain called the prefrontal cortex often results in deficits in memory and attention. However, people can recover some function over time. Studies examining recovery after motor or language deficits have indicated that undamaged regions of the brain can compensate for the damaged areas. While it is clear that neural plasticity is necessary for functional recovery after damage to the prefrontal cortex, specific mechanisms of cognitive recovery are not as well understood.

"In our current study, we were interested in examining whether intact cognitive performance in patients with damage to the prefrontal cortex in one hemisphere of the brain is mediated by functional compensation of the prefrontal cortex on the intact, undamaged side of the brain," explains lead study author, Dr. Bradley Voytek from the University of California at Berkeley.

Dr. Voytek and colleagues designed a study examining brain activity in patients with damage to the prefrontal cortex on only one side of the brain. Patients and matched control subjects performed a visual working memory task or a visual attention task. Importantly, the researchers presented stimuli to one hemisphere at a time, allowing them to challenge either the intact or damaged prefrontal cortex in the patients with brain damage. They observed transient increases in activity related to attention and memory in the intact prefrontal cortex within a second of stimulus presentation to the damaged hemisphere.

"Our results show that the neural changes observed in movement recovery after motor cortex damage expand to cognitive domains and apply to a dynamic model of memory and attention compensation by the intact, undamaged cortex," concludes Dr. Voytek. "We demonstrate that brain recovery can manifest itself as transient changes in information processing occurring on a sub-second timescale after the injured brain has been challenged to perform, supporting a dynamic and flexible model of neural plasticity."

http://www.cnsfoundation.org

Theratogs

Para quem está interessado, a Ostifarma, na Amadora, já está a comercializar os Theratogs.
SA

XCell Center

Esta semana demos mais um passo que eu espero que seja um grande passo: o Q. fiz o transplante de células estaminais no XCell Center.
Estamos muito optimistas, correu melhor que o previsto porque o Q. conseguiu ter uma quantidade enorme e extraordinária de células.
Portanto, o potencial estava lá, estava era no sitio errado :-)E agora está no sitio certo.
Torcemos para que o Menino Jesus nos traga resultados e por um ano de 2011 em grande.

sexta-feira, 3 de dezembro de 2010

XCell-Center News: Journey leads to 'better life' - for cerebral pals...

Journey leads to 'better life' - for cerebral palsy patient after stem cell therapy

Avaia looks at people's faces.
That's the biggest difference her mother has noticed since the community rallied to send the two-year-old to Germany for special bone marrow stem cell treatment.
She had trouble paying attention before. Her eyes would wander constantly. Lights attracted her attention but not her focus.
"Since we've been back, she's taking time to look at things, she's focusing a lot better, even on people's faces," Ashley DiMarco said.
"If she's interested in it, it could be a toy, a person, anything, she just really takes her time to focus on what it is. She does take her breaks, but she's doing so much better. She is much more alert."
Avaia has spastic quadriplegic cerebral palsy. She is unable to walk, talk or communicate, and eats through a feeding tube.
Her parents heard about the treatment at a private clinic, XCell-Center in Dusseldorf, Germany and decided it was worth a shot, applying with physicians' letters and other documentation.
When Avaia was accepted earlier this year, Ashley, a stay-at-home mom and John, who works at the hydro tunnel in Niagara Falls, began a whirlwind two months of fundraising in an effort to raise the $30,000 required for treatment and travel.
Through those fundraisers, including barbecues, yard sales, a McDonald's event, concert and golf tournament in St. Catharines, Thorold and Welland, they met their goal.
"I want to say thank you to everybody who did help," DiMarco said again this week. "Thanks to them, this is what happened and it's already given her a better life."
The Thorold family travelled to Germany Sept. 10, returning nine days later, and were told it would take several weeks to see any results.
Now two months later, Ashley DiMarco said she's seeing improvements.
"For everyone else, they might think it's something small, but for us it's huge," DiMarco said. "It can only get better, I think, from here. She's not going to get worse and it can only increase her chances."
Besides her ability to focus more, Avaia is now reaching out and grabbing objects, DiMarco said. She can't do it for a long period of time, but DiMarco said she was unable to hold anything in her hands before.
Avaia is also trying to sit up on her own, but hasn't mastered it yet. Once DiMarco has her up, Avaia can hold herself up for a few minutes at a time. DiMarco said if Avaia starts to lean over, she knows she has to put her hands down first and tries to stop herself from falling over.
In therapy, Avaia used to be held up around the waist and her upper half would bend over. DiMarco said she can now hold up the upper half of her body. She's been able to do it for 10 minutes at a time.
"She does get cranky after a little while because it's a lot of work for her, she's holding up all that weight on her own, but you can tell she's so proud of herself and she starts laughing and smiling," DiMarco said.
"She knows she's doing it and she's doing a great job of it."
The family is hoping to go back for more treatment, it's just a matter of money.
DiMarco said they will aim for next summer, though children can receive a second treatment in as early as six months. It's best to go when she's young and her brain is still developing for the best results, DiMarco said.



XCell-Center News: Journey leads to 'better life' - for cerebral pals...: "By Karena Walter / The Tribune - St. Catharines, Canada ST. CATHARINES - Avaia looks at people's faces. That's the biggest difference he..."

G Therapy

Olá.
Há poucos dias deram-nos mais uma dica, que ao que parece, está a ter bons resultados.
Chama-se G Therapy e é na India.
Para quem é adepto de terapias ou tratamentos alternativos, como eu, é mais um passo importante uma vez que é baseado na homeopatia.
Aqui vai o link:
http://g-therapy.org/index.php/g-therapy/290-g-therapy-tratamento-para-paralisia-cerebral-autismo-sindrome-de-down-subnormalities-mental-neuropatias-esclerose-multipla-portugal-brazil-lisboa-sao-paulo-rio-de-janeiro.html
Sara