Your Pearls of Wisdom – Advice From Parents
Pearls Shared at the Investigator & Family Meeting
Families were asked: “Do you have other pearls of wisdom to share with other families?”
Starting therapy — PT, OT, etc. — early. (We don’t have much experience at 11 months)
Medical marijuana infused oil stops seizures. Also caregiver CNA program in Colorado
One major game changer for KoKo was taking hippotherapy. She loved riding the horse
Good support system, eg. Team at school and family
Keto diet. Seizure free for 3 years!
ABA
Baby Delight Go with me chair = great chair to take on the go up to 75 lbs
The 6 F-words in childhood disability: Function, Fitness, Fun, Family, Friendships, and Future: www.canchild.ca/en/research-in-practice/f-words-in-childhood-disability/f-words-footprint
McMaster University in Canada-CanChild Dr. Peter Rosenbaum
Hippotherapy and AAC sign language
Obtaining the diagnosis has been a game changer for us. Knowing the culprit behind our sons condition gave us a target to concentrate our energy. Finding STXBP1 facebook community and now the STX BP1 Disorders foundation gives us hope and energy.
Communication device – we use PODD (through school)
Sarah Loving SLP Collier Center at University of Texas at Dallas, helped establish a program for assistive technology. Got Morgan on Words for Life LAMP.
FODMAP diet (reducing/eliminating certain sugars)
Music (Disney movie soundtracks cures times of frustration- keep favorite songs downloaded on your phone)
Music has been our best motivator. We hold chimes to motivate her to propel her gait trainer to using music as a calming agent when she is upset.
Just knowing that so many people are:
1. Affected by STXBP1
2. That this group has done so much to help families
Self care- its ok to feel overwhelmed at times. I have found that therapy and medication have helped me as a parent
Programs/services/items as a benefit through insurance, especially medical assistance. Look deeper into yours: WIC for under 5yo, ½ price Amazon prime, diapers and wipes are covered, Y memberships with some insurance
Weighted vest (homemade) helps his ataxia and seems to improve gross and fine motor practice
Intense therapists have made all the difference. PT makes no excuses and has high expectations. ST is very hands on and uses prompt method which he receives very well.