[michael-casten]

We potty trained our daughter (SMA Type 2) just as we trained her unaffected siblings. The process was quick as she picked up on it readily. Now that she’s nine we have her in diapers overnight, when we take long trips, or will be away from her for a length of time. She seems to have go to the bathroom more often than her siblings…not sure why, though.

[michael-casten]

DeAnn,

I wrote an article on the Amino Acid Diet under “Columns” >> “Five Servings of Strength”…maybe that might help?!?

[michael-casten]

Benefits have included a safe weight gain, increased endurance, and a bit of strength. This diet can be partially or fully implemented. We implement partially as our daughter eats by mouth as well.

[michael-casten]

Our daughter has been on this diet for many years and the plan is to keep her on it. We have switched to only having her participate in the feeding overnight. The pros are that she gets the nutrition that she needs and we know she’s getting it. She eats well by mouth but the diet ensures nutrition.

[michael-casten]

Thanks for the forum. There are so many topics worth exploring:

• Spinraza
• Gene Replacement Therapy
• Loss of sleep
• Toileting
• Bathing
• Dressing
• Pain
• Contractures
• Coping through a day
• Nutrition
• Hope (or lack thereof)
• Emotions
  • Anger
  • Guilt
  • Hopelessness
  • Fear
• What will happen to a child as they mature and go out into the world on their own?
• Co-dependence
• Public stares
• Medical equipment
• Play
• School
  • IEP
  • Teaching assistants
  • bullies
  • friendships
  • physical and occupational therapies
• Siblings
• Travelling
• Winter and wheelchairs
• Home modifications

Anybody want to add to the list?