My son was born in February 2008 within 5 hours of being born we were told he would need to be admitted into special care. Three months later - we managed to come home! We were told on day 1 that he had Golden Har syndrome. When he was 2 weeks old this was changed to CHARGE. He had the genetic test and confirmation came when he was 7 months.

He has a conductive hearing loss and wears a BAHA, he has a coloboma in the left eye, facial palsy on the right, swallowing difficulties so he is ng fed - off to have gastostrophy next week!!! and also he has great skill in producing lots of secretions from his nose and needs suctioning regularly!!

I have discovered through the internet that a doctor in Canada uses Botox injections in the saliva glands to help this problem in children with CHARGE. He repeats the proceedure 4 times in 18 months and then the problem is resolved! I passed my research onto my son's consultant who has since discovered that a plastic surgeon in my home town has been carrying out the proceedure for a few years. We are now awaiting an appointment to go and speak with him to see if it suitable for our son. I am quite proud of myself for possibly sorting this problem for my son as noone else out the long list of medical people we visit regularly had heard of it!!

Has anyone heard of these Botox injections or had them done. We are currently using the hyacine patches, which do make a difference but he is having a reaction on his skin from them. I would be interested in hearing if there are any side effects from the injections.

This forum is a great idea to offer parents support as most people look at you blankly when you mention CHARGE syndrome. It is good to be able speak with people who appreciate what is involved.

Thanks



Edited 1 time(s). Last edit at 07/23/2009 11:03PM by clairepeters.