Guestbook
Gillian Raymond
samedi 1 septembre 2007 12:13
Me again. Is there any information out there on vaccinations/immunizations and AGS?
Gillian Raymond
mercredi 29 août 2007 15:26
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Hi. We have just been diagnosed (august 23rd) with AGS. My daughter Maya is now 15 months old - she got sick at 4 months - feeding, crying and then one morning her head tilted to the left side. CT scan showed calcifications. Maya then improved dramatically for a few months - gained weight, could sit up, roll over etc... then almost 3 months after initial symptoms she crashed - lost all developmental gains. A few months later Maya started regaining... she can smile now.... has anyone else had such a serious regression? Is there anyone near Toronto Canada?
Donna Miller
mercredi 22 août 2007 21:16
I would like to know if any families are interested in attending a conference/clinic on AGS sometime next year, most likely in either New York or the Washington D.C. area in the USA. We would work very hard to get free or inexpensive travel and housing arrangements. Please contact Donna Miller (231)929-3484 or dj513662@charter.net if you are interested.
Donna Miller
lundi 13 août 2007 19:57
My youngest son had botox three times in his leg muscles. The third time, he had a severe reaction/regression episode in which he had severe brain inflammation/encephalitis and he almost died. He never fully recovered from this regression episode; he has been blind since it happened. This was a horrible experience to go through, and I very strongly urge that botox NOT be used on any other AGS child. Anything that can rev the immune system can cause regression, and Botox is a nerve toxin that the immune system will react to.
kim/desmond watson
vendredi 10 août 2007 11:15
my e-mail is playing up at the moment. but can anyone give further advice on botox treatment and why it cannot be given to children with AGS. Consultants looking after my son are recommending it, i have explained that i didnt think it could be used on him but they say they have no evidence of this. Can anyone post a message back on this board for me until i sort out an address. many thanks.
N.B: Donna Miller, i think you might be able to enlighten me regarding this, could you post a contact for you or reply on this message board. much appreciated. kim
N.B: Donna Miller, i think you might be able to enlighten me regarding this, could you post a contact for you or reply on this message board. much appreciated. kim
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