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498Re: [Families of Angelman Syndrome] Feeding

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  • Ann Watters
    Jul 5, 2005
      In response to Jennifers question about g-tubes - Brandon got his g-tube when he was 4 mo old because he aspirated his milk. He had a swallow study done and from that moment on I could not feed him anything by mouth. I was not happy about having to have one, but he only weighed 9 lbs at the time so we all do what's best for our angels. From 4 mo to about 4 yrs old we fed him every 4 hrs round the clock by g-tube. We were only given the choice of a Mickey button or a Bard (which is hard plastic and much harder for the kids to pull out). We chose the Bard since we live 6 1/2 hrs away from the clinic and if they ever come out for whatever reason they need to be replaced within a couple of hrs. Brandon had 4 g-tubes ( the last one replaced because it was faulty) by the time we were done. His first one lasted us almost 2 yrs. You can have problems with them getting skin built up around them which you just wash off when bathing or having infections. We only had one incident of
      infection which was handled with topical cream. The g-tubes really aren't that bad. In February Brandon had his g-tube removed for good. (he just turned 6 in April) We finally made it to the point where he eats and drinks everything by mouth - he eats ALL the time but still only weighs a little over 30 lbs. They just are so active and burn up so many calories. Brandon is my 6th child and one of his older brothers ate all the time and was just as skinny so I'm not worried about that. As long as he keeps gaining and growing which he is. I was finally able to start feeding by mouth when Brandon was around 2. He didn't want anything to do with it and I was very frustrated. One of the things I realized was that he didn't want anything in his mouth unless he put it there and he had to inspect it first. I started just letting him eat with his fingers because he did much better that way than me trying to fight him and making mealtime a battle. He still eats with his
      fingers and I am trying now to introduce utensils. It's going to be a slow process just like getting him to eat was. And now he's learned how to throw a ball so mealtime is even more fun!!! Wishing you the best - Ann and Brandon, 6 yrs old AS


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