Guestbook
Chris Hawkins
dimanche 20 janvier 2008 15:19
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I recently became aware of AGS. I wish you all strength for each and every day. As a parent with special needs children in a similar situation I hope that you are also able to enjoy life to the fullest with your children.
Kim Desmond Watson
mercredi 16 janvier 2008 12:03
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Dear Kim Desmond,My Grandson Ross as had Botox three times now in his feet and his amstrings.Like most of the children with ags they are very stiff and it as worked well for Ross so dont be put off with what Donna Miller is saying.
Iwent to the conference in Pavia Milan in June 06 and she did say to the Drs and Dr Crow and they said not possible to blame the Botox
The thightness of Rosses amstrings was so thight they where pulling is feet to go outwords now the botox as relaxed his muscleand they are now coming back to the correct position.
If you are still unsure get in touch with Dr Crow at Leed Universaty or ring his secartry i did and he rang me back.hope this is a help to you both .
best wishes June Tonge
Hope this is of help to all out there.
Iwent to the conference in Pavia Milan in June 06 and she did say to the Drs and Dr Crow and they said not possible to blame the Botox
The thightness of Rosses amstrings was so thight they where pulling is feet to go outwords now the botox as relaxed his muscleand they are now coming back to the correct position.
If you are still unsure get in touch with Dr Crow at Leed Universaty or ring his secartry i did and he rang me back.hope this is a help to you both .
best wishes June Tonge
Hope this is of help to all out there.
ROBERTO ORIANO & MUSTAFA OEZER
lundi 24 décembre 2007 00:14
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Our personal greetings and wishes of Merry Christmas to all AGS children.
We hope that the new year bring to all us new discovers for a better future.
The docs of International Aicardi Goutieres Association are available for any situation.
I advise everyone that if changes e-mail address please communicate to us.
A big hug and remember NEVER GIVE UP !
Roberto Oriano & Mustafa Oezer
Representative of I.A.G.S.A. families
We hope that the new year bring to all us new discovers for a better future.
The docs of International Aicardi Goutieres Association are available for any situation.
I advise everyone that if changes e-mail address please communicate to us.
A big hug and remember NEVER GIVE UP !
Roberto Oriano & Mustafa Oezer
Representative of I.A.G.S.A. families
hamida.rafiq
samedi 22 décembre 2007 04:26
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hi sabrina adam had jaundice when he has born they gave him some medicines it eventually went away itself ummar was put under the blue light in special care is your daughter on medications ? sometimes lomg use of certain medication can cause alot of side affects
Sabrina Haslam
jeudi 20 décembre 2007 20:26
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My daughter was born with cerebral palsy, she also has AGS. I've known this for a number of years, she is now 33 years old, but when I was told she had this 'strange sounding syndrome' at the age of 3, the Dr said, "not to worry about it" and "go and enjoy life".
So we did, and it never came up again until last year. My Daughter became jaundiced, and after having a liver biopsy she was diagnosed with Cirrhosis of the liver, even though she had never drank in her life, I was shocked, however, during the consultation the Dr's discovered the notes regarding the Aicardi-Goutieres syndrome.
They now think it maybe connected but they are still investigating this. My question is: has anyone else heard of this connection? I cannot find anything on any of the websites that relate to cirrhosis and AGS.
Maybe someone reading this can shed some light on it.
Thank you,
White light and love
Sabrina
So we did, and it never came up again until last year. My Daughter became jaundiced, and after having a liver biopsy she was diagnosed with Cirrhosis of the liver, even though she had never drank in her life, I was shocked, however, during the consultation the Dr's discovered the notes regarding the Aicardi-Goutieres syndrome.
They now think it maybe connected but they are still investigating this. My question is: has anyone else heard of this connection? I cannot find anything on any of the websites that relate to cirrhosis and AGS.
Maybe someone reading this can shed some light on it.
Thank you,
White light and love
Sabrina
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