Pearls shared at the conference:
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!
- Baby Delight Go with me chair = great chair to take on the go up to 75lbs
- 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.