Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Kim, Bryce was not eating anything before our first trip to Cleveland. After that he would eat puddings and yogurts. After the second trip, he is eating 30 different foods of all sorts including chicken. His oral motor skills were good. He had a cleft lip and palate and 5 surgeries with that but with therapy, his oral motor skills are quite good, so tht helped a lot when his swallow improved. Yes, after the second treatment, he passed the swallow study with all different consistencies of food and liquid. Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 DeeDee - What was the extent of your son's oral motor skills? How old is he? What oral motor services had he been receiving and for how long? Was he eating orally at all? Did he have clear swallow studies? Thanks, Kim mother to 2yrs. (no subject) Aliza, We have had both experiences that you asked about. WE did go to Cleveland and had a very positive experience. WE went twice. We spent two weeks there in July and he went from eating nothing to eating pureed foods. And then we went back in January for two more weeks and he is now eating everything (well not steak). I think the success depends on what exactly is the cause of the feeding difficulty. It is a non-aversive treatment and lasts about 1 hour per day. We stayed at the McDoanld House both times which was a great experience. The way it is set up now for the research study however you cannot go back again. I am glad we were able to because he needed the extra treatments. Good Luck with your decision. Bryce also has a cochlear implant which he got at 2 3/'4 years old, as soon as he was medically stable. He has had it 15 months. Prior to being implanted, he heard at about 100 decibles and now he can hear at 40 decibles. He didn't get any benefit from hearing aids. But it hasn't been an easy road. For the first six months we had some bizarrre technological complications that are extrememly rare. (Don't you all wish you had a nickel for everytime you have heard " I've never seen this before!) But then the company (Advanced Bionics) flew in specialists from all over the country to remedy the situation in June. We needed to know if the equipment was faulty or if Bryce's auditory nerve was bad in which case no device would give him hearing. His nerve was fine and the device was fixed. But still his progress was slow and we beleve that it was due to his neurological problems. (Swallowing is a neurological function.) Other children with neurological problems have taken an extra 6 months to awaken their auditory system after being implanted. And that seems to be what is happening with Bryce. Now, 8 months after the June date, he is responding in all kind of new ways and has begun speaking for the first time. He has learned 38 new words in the last two months. So we are very pleased but not yet sure whether the implant will work well enough for him to be totally oral. We are considering adding cued speech to supplement his learning language. Another question to consider is Win's age. Our center in Chapel Hill, NC would be hesitant to implant a 6 year old but I don't know if others feel the same way. You may want to investigate that first. Our center only implants with the goal of gaining spoken language. Feel free to e-mail any other questions. It hasn't been an easy road but I am very glad we have the implant. Deedee " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 SHE IS BACK....HURRAY!!!! >> HI HI EVERYONE from the lap of Peggy..... YEAH it's back. My Mac guy > up dated my Outlook so I have to find out how everything works. Gotta > finnish reading my posts.. I am tooooo excited. This is almost as good > as Christmas..LOL> > Love and Prayers,> Peggy 9/04 ifp Florida> Quote Link to comment Share on other sites More sharing options...
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