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maka5

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Jan 15, 2008
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Friend was DX
Country
US
State
hawaii
City
pearl city
Hi. I'm new to this site and looking for help for a friend of mine who was diagnosed with ALS 3/06. She is currently on a ventilator & is still able to turn her head a lttle, blink, and open her mouth for oral suctioning. But recently (within a 2-3 week span), we have noticed that she is unable to open her mouth as wide as she use to, which has been making it a little more difficult to brush her teeth and tricky to get the right angle to do oral suctioning. She and her mother(primary caregiver) are worried that if this continues, she may not be able to open her mouth therefore making it almost impossible to oral suction her(she has a lot of oral secretions at times). Has anyone else had this problem? Has anyone has there Dr.'s prescribe baclofen for this? Tracy
 
My mother had bulbar and she was unable to open her mouth. She would wear dentures and unfortunately it got to a point where she could no longer wear them so we would pry the suction catheter through the upper and lower gums. She was no longer able to brush the teeth that she did have. It was most frustrating for her.
 
My mum also had progressive bulbar & whilst she could open her mouth it certainly became very restricted, although she never got to the point where she couldn't open her mouth at all.

One other symptom she had which I haven't read about or seen anywhere was that in her final months her lower jaw began to protrude forward and her previously straight teeth became quite crooked, to the extent that her lower canines cut into her upper palatte. She had to have dental treatment to shave her lower canines down to relieve the pain this caused and with the restricted opening of her mouth this wasn't a particularly easy procedure.

Brushing teeth was difficult and using toothpaste out of the question as she couldn't swallow or spit. A small amount of pineapple juice on an oral swab did the trick in the end.
 
Hi maka5. Sorry about your mom. Baclofen might help loosen the muscles in your mom's jaw so that you are able to open it wider. It is generally given to patients for spacticity and cramping.
AL.
 
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