Guestbook
Paola delatorre
Saturday, 06 September 2008 09:30
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Hi everyone,
Unfortunatly, i couldn't go to the Conference AGS in Washington..I would have liked but, that's quite a long way from France ....and i miss time (i began to work and i raise my child on my own...) So I hope to get all the informations through you...thanks a lot..hope to hear soon about you
Paola
Unfortunatly, i couldn't go to the Conference AGS in Washington..I would have liked but, that's quite a long way from France ....and i miss time (i began to work and i raise my child on my own...) So I hope to get all the informations through you...thanks a lot..hope to hear soon about you
Paola
Paola delatorre
Saturday, 06 September 2008 09:25
This email address is being protected from spambots. You need JavaScript enabled to view it.
Hi everyone,
Unfortunatly, i couldn't go to the Conference AGS in Washington..i would have liked but, that's quite a long way from France ....and i miss time (i began to work and i raise my child on my own...) So I hope to get all the informations through you...thanks a lot..hope to hear soon about you
Paola
Unfortunatly, i couldn't go to the Conference AGS in Washington..i would have liked but, that's quite a long way from France ....and i miss time (i began to work and i raise my child on my own...) So I hope to get all the informations through you...thanks a lot..hope to hear soon about you
Paola
Adler Cuya
Tuesday, 02 September 2008 18:07
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My daughter or that he detected Aicardi syndrome, after two months it operated born in the head by a cyst aneironial, and 8 months for the problem of the column that his vertebrae were some small and not developed. From 6 months she has been taking Vigabatrin by the convulsions that which had the next day to take medicine that is left of seizures when I was 6 months old. 15 days ago, I take a Magnetic Resonance of control which I detect that he had a cyst in space that had left the first cyst. I wonder if you've had these cases and which I can do to help my daughter that I see that its development is well atrazada today it is reaching two añitos and not as I do to help, so far it does not I know that her dad and my wife is her mom, when called by his Nobre reocnoce not me, but when you want something if you're looking for.
Tengo ni hijita que le detectaron sindrome de aicardi, a los dos meses de nacida le operaron de la cabeza por un quiste aneironial, y a los 8 meses por problema de la columna que sus vertebras eran algunas pequeñas y no se habian desarrollado. Desde los 6 meses ella viene tomando Vigabatrina por las convulsiones que tenia la cual al día siguiente de tomar la medicina dejo de convulsionar eso es cuando ya tenia 6 meses de nacida. Hace 15 días le sacamos una Resonancia de Magnética de control el cual detecto que tenía un quiste en el espacio que habia dejado el primer quiste. Quisiera saber si ha tenido estos casos los cuales y que puedo hacer para ayudar a mi hijita el cual veo que su desarrollo esta bien atrazada, hoy ella esta cumpliendo dos añitos y no se como puedo hacer para que ayudarla, por hasta el momento ella no sabe que soy su papá y que mi esposa es su mamá, cuando la llamó por su nobre no me reocnoce, pero cuando quiere algo si lo busca.
Tengo ni hijita que le detectaron sindrome de aicardi, a los dos meses de nacida le operaron de la cabeza por un quiste aneironial, y a los 8 meses por problema de la columna que sus vertebras eran algunas pequeñas y no se habian desarrollado. Desde los 6 meses ella viene tomando Vigabatrina por las convulsiones que tenia la cual al día siguiente de tomar la medicina dejo de convulsionar eso es cuando ya tenia 6 meses de nacida. Hace 15 días le sacamos una Resonancia de Magnética de control el cual detecto que tenía un quiste en el espacio que habia dejado el primer quiste. Quisiera saber si ha tenido estos casos los cuales y que puedo hacer para ayudar a mi hijita el cual veo que su desarrollo esta bien atrazada, hoy ella esta cumpliendo dos añitos y no se como puedo hacer para que ayudarla, por hasta el momento ella no sabe que soy su papá y que mi esposa es su mamá, cuando la llamó por su nobre no me reocnoce, pero cuando quiere algo si lo busca.
Roberto Oriano
Wednesday, 27 August 2008 22:55
Dear Friends,
We wish to inform you that IAGSA International Aicardi-Goutieres Syndrome Association, in collaboration with Prof. Lebon of the Hopital St. Vincent de Paul in Parigi and through the Association’s team of doctors, has put together a questionnaire on the relationship between vaccinations/infections and the onset/course of Aicardi-Goutières syndrome. This is a very interesting topic on account of the growing evidence of a relationship between AGS and autoimmune mechanisms.
It is also an issue relevant to the questions that many parents frequently raise regarding the opportuneness/possible risks of submitting their children to vaccinations.
Anyone wishing to contribute to this research by filling in the questionnaire is invited to contact the families’ representatives: Roberto Oriano diegotitti@tiscali.it or the President of IAGSA, Fiammetta Boni iagsa@libero.it
The results of the research will subsequently be made available.
A big hug to all you
Roberto
We wish to inform you that IAGSA International Aicardi-Goutieres Syndrome Association, in collaboration with Prof. Lebon of the Hopital St. Vincent de Paul in Parigi and through the Association’s team of doctors, has put together a questionnaire on the relationship between vaccinations/infections and the onset/course of Aicardi-Goutières syndrome. This is a very interesting topic on account of the growing evidence of a relationship between AGS and autoimmune mechanisms.
It is also an issue relevant to the questions that many parents frequently raise regarding the opportuneness/possible risks of submitting their children to vaccinations.
Anyone wishing to contribute to this research by filling in the questionnaire is invited to contact the families’ representatives: Roberto Oriano diegotitti@tiscali.it or the President of IAGSA, Fiammetta Boni iagsa@libero.it
The results of the research will subsequently be made available.
A big hug to all you
Roberto
Erika Gallagher
Sunday, 10 August 2008 00:24
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Hello AGS parents, I plan on attending the conference in Washington and look forward to meeting you. Lately my son, Danny, has had a low grade fever of 99.5 with no other symptoms. He did just get over an intestinal virus last week and did have the recurring fevers for the first 7 months of his life. He's supposed to have his adenoids removed again (they grew back after only 8 months) and I'm nervous about his low grade fever. Does anyone's child have low grade fevers with no other symptoms?
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