Medical Equipment and Therapies

For SLOS children that cannot eat, a g-tube is a necessity. What most parents don't know to begin with is that there are different kinds of g-tubes and different kinds of feeding pumps. Ask the surgeon to go over the different kinds before a decision is made.

Gastronomy Tubes:

  • MIC-KEY button (balloon system; a more commonly used brand)
  • BARD
  • Microvasive by Boston Scientific
  • PEG
  • Freka (in the UK)
  • Kendall/Tyco | Entristar (anchoring system) | Neutriport (balloon system)
  • Ross
  • mini-button (cross between Bard and Mic-key)


Protection:
No need to protect g-tube sites unless fear of infection.

  • Tegaderm semi-permeeable adhesive film dressing
  • Biggest 3M waterproof bandages


Feeding Pumps:

  • Kangaroo PET
  • Ross Patrol
  • Zevex Enteralite
  • Zevex Enteralite Infinity - newer and is waterproof; allows daily totals


Medical Beds:

  • Monroe bed or Medical Safety Bed
  • Sleep Safe Bed

Sleep Safe Beds, LLC
3135 Dillons Mill Road
Callaway, VA 24067
Phone: 866.852.2337
http://www.sleepsafebed.com

Wheelchairs, Chairs, Strollers and Standers:


Orthotics:

  • Cascade Dynamic Ankle Foot Orthotics (DAFO)
  • Sure Step Orthotics


Walkers:

  • Pacer Gait Trainer Walker
  • Kaye Posture Control Walker
  • Gunnel Ring Walker
  • EZ-Step Toddler walking vest
  • Homemade version of vest: Take a typical child’s harness and remove the “leash” part; Cut it into three pieces, two of which are sewn to the harness shoulders for handles. the third goes up between her legs for additional support.


Oral Motor Equipment and Therapies:

  • Sonicare toothbrush
  • Surround toothbrush http://www.specializedcare.com
  • Oral syringes availble by Baxa Corp. 303/690-4204
  • Check with your local pharmacy for free bags of syringes (come in 100 count bags)
  • Kinetic Kids Jiggler by Abilitations


Miscellaneous equipment and therapies:


Sensitivity Issues:


Diapers:

Our Families

Markie Noah from Fargo, North Dakota. Carson Gallagher from Ann Arbor, Michigan.Hayley Martin from Woodcroft, South Australia.Alexis "Lexi" Black from Barboursville, West Virginia.