Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Hi Sally, I know some kids (CHARGE and non-CHARGE) who have had a surgical procedure to take care of the ptosis. Other than that, I don't know any other solution. (BTW, I am working on a reply to your other post ). pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 My grandson has charge and he had slings put in above-his eyebrows to relieve the ptosis so he could see. They will need to be changed once his face grows more. RE: Ptosis Hi Sally, I know some kids (CHARGE and non-CHARGE) who have had a surgical procedure to take care of the ptosis. Other than that, I don't know any other solution. (BTW, I am working on a reply to your other post ). pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Hi Sally, i have a ptosis, ive had heaps of operations on it my eye was turned in as well, its still droopy but not as bad as it was , but still noticable Ptosis > > Hi, > Has anyone had trouble with their child's ptosis (droopy eye lid) so severe > that it prevented them from seeing? Little Rivers is having that > problem and he accommodates by holding his lid open, but that prevents him > from using that hand for anything else. Kim and I need help, please!! > > Sally (Mom to Andy, 23) > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca, or email info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Belinda! i got my new hearing aids! They are sooo cool! i just think i might need to get some of the sound adjustes cause i can hear the sounds of my computer typing really loud and even hear someone having a leak in a far washrrom but cant hear ppl talking 10 feet away. Yup that sounds wrong! LOL Anyways im much happier and i am going to leave you a message in BUS so go check it in 10 minuts. Chantelle Overheard in the office of the food and drug administration: If laughter is the best medicin, shouldnt we be regulating it? ______________________________________________________________________ Post your free ad now! http://personals.yahoo.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Chantelle, did u mean to send that privately? dont send that to the list.... Re: Ptosis > > Belinda! i got my new hearing aids! They are sooo > cool! i just think i might need to get some of > the sound adjustes cause i can hear the sounds of > my computer typing really loud and even hear > someone having a leak in a far washrrom but cant > hear ppl talking 10 feet away. Yup that sounds > wrong! LOL > > > Anyways im much happier and i am going to leave > you a message in BUS so go check it in 10 minuts. > > > Chantelle > > Overheard in the office of the food and drug administration: If laughter is the best medicin, shouldnt we be regulating it? > > > ______________________________________________________________________ > Post your free ad now! http://personals.yahoo.ca > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca, or email info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 yes, but i dont know wich of your 5 or 6 emails is your current one. Never mind, forget it. Chantelle Overheard in the office of the food and drug administration: If laughter is the best medicin, shouldnt we be regulating it? ______________________________________________________________________ Post your free ad now! http://personals.yahoo.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 I have very mild droopy eyes. I think though it was fixed a bit durring one of my early coanal atresia operations when i was a baby. My dad says he remembers that i had something to my eyes when i was young. That would probably account for a couple of operations that I dont know what they were for. Oh well, i sometimes feel silly cause i dont look charge and i want to fit in. I almost wish i looked more CHARGE. I think i wish too much. I better look in the archives for something i wrote months ago. lol, need it for friday but might as well look it up right now. Chantelle Overheard in the office of the food and drug administration: If laughter is the best medicin, shouldnt we be regulating it? ______________________________________________________________________ Post your free ad now! http://personals.yahoo.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 5 or 6 emails? lol, i guess i do have a few hey, theres 2 i check like eall the time, tahts this one and imslightlycrazy one ---- Chantelle McLaren wrote: > > yes, but i dont know wich of your 5 or 6 emails > is your current one. Never mind, forget it. > > Chantelle > > Overheard in the office of the food and drug administration: If laughter is the best medicin, shouldnt we be regulating it? > > > ______________________________________________________________________ > Post your free ad now! http://personals.yahoo.ca > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca, or email info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 yes they were done when he was about 6-8 mths old because he had a lazy eye that needed to also surgically be moved up. He had open heart surgery for at 4 mths, with a complete artery regrafting, eyeball surgery, eyelid surgery, nose surgery and mouth surgery all under a year and he is great. The slings are barely visible unless you look close. The only way he can hurt them is sheer force directly to the eyelid, and believe me he falls down and bangs himself up like any other kid, so they are good. If he did not have them, he would not be able to see at all. He wears glasses and does not need his hearing aides anymore . He doesn't even notice them. He is 6 now and we are fighting the school district who wants to label him as mentally retarded instead of specific learning disabilities. He is in school in a severe/moderate class and goes to Stowell Learning Center. In 3 months at Stowell he went from a 2 year old level to a 4 year old level. He has neurosenioural bone conductive hearing loss and is using audiovocal equipment, bone conduction equipment and Samonas Sound Therapy. He is speaking in full sentences, when 6 mths ago he only said a few words. Sound therapy is something all of you who have Charge children should look into (dependent of course on the type of hearing loss). The change in him since he can communicate is absolutely remarkable. Oh yeah he only has about 5 baby teeth. He will never have adult teeth. He will need implants and this does affect his speech. Bless all of you. Liz RE: Ptosis > > My grandson has charge and he had slings put in above-his eyebrows to > relieve the ptosis so he could see. They will need to be changed once > his face grows more. > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca, or email info@.... 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at www.chargesyndrome.org or by calling 1-. _____ Quote Link to comment Share on other sites More sharing options...
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