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Dr Annette Feigenbaum
lundi 30 juillet 2007 18:19
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I am a Geneticist in Toronto Ontario Canda and we have recently diagnosed a young child with AGS. Is there anyone out there preferably in our area who could speak with this family?
Thanks ASF
Thanks ASF
Glen Stephens
vendredi 13 juillet 2007 20:41
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Our son Gabriel (18 mths) resently started Keppra to help regulate brainwave activity. He takes 1 cc orally twice a day. We have seen remarkable progress since starting the therapy. We see a nutritionist in two weeks. Will probably have to consider a G-tube since he has stopped gaining weight.
Donna Miller
jeudi 21 juin 2007 04:04
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Has any AGS child used the inhaled medication called Pulmozyme? It is a DNase that is inhaled as a medicine through a nebulizer. It is meant to help break up secretions and dead stuff in the lungs, so you can cough it up easier. My son noticably has diarrhea when he uses Pulmozyme. This side effect has never been seen in non-AGS patients. I think that it might be related to the fact that AGS kids lack DNase or RNase. I do not know whether this is a helpful treatment or not. Has anyone ever used it?
Jean Maurer
mardi 19 juin 2007 22:12
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Does anyone else's child stick out their tongue a lot? What is that about?
Glen Stephens
dimanche 27 mai 2007 01:23
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Our son Gabriel was diagnosed with Aicardi-Goutieres syndrome in March, 2007.
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