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Post by tamivas on May 12, 2009 20:40:18 GMT -5
My daughter Brittni is 18 with JNCL, my question is...Are there any signs that lead up to no longer swallowing? She is starting to not eat much on some days, others back to her norm, she is starting to slobber a lot like she isn't swallowing her saliva? Is that the start of her not eating anymore?
Thanks, Tami
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Post by maroon40 on May 12, 2009 22:34:51 GMT -5
We noticed Aaron 13 with Jncl choking on dry foods(like tater tots, french fries) I mentioned it to the Dr. and she sent him for a modified barrium swallow test it showed that he pockets food in the back of his throat causing him to choke if he doesn't drink to wash it down. It also showed mild muscle atrophy but he still eats normal foods just needs cueing to slow down and drink after a couple of bites. He also eats really good one day and another day eats very little but for the most part he is a really good eater. Your best bet is to talk to you Dr. about it. The speech and occupational therapist check on him every 3-6 months. Hope this helps.
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Post by Donna on May 15, 2009 14:24:28 GMT -5
If she coughs after drinking fluids, that is a sign that she's aspirating. My son was able to eat solid foods for a while after he wasn't able to drink anymore. We knew he was not able to eat anymore when he refused to take a bite. Luckily, we already had the feeding tube so I could still give him food. A swallow study is what you should do though to know for sure. Good Luck.
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