Parents: Tweens, Teens, and Everything in Between: Bridging the Gap Between Your T1D & You. Sam Engle DO, Pediatric Endocrinology Fellow at CHW
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1 Parents: Tweens, Teens, and Everything in Between: Bridging the Gap Between Your T1D & You Sam Engle DO, Pediatric Endocrinology Fellow at CHW
2 3 Pillars to Diabetes Care Test Blood Sugar Count Carbs Give Insulin First things you learn after diagnosis
3 Everybody is Different Age of Diagnosis 14 year old boy diagnosed at age 5 (never received formal education) is different than a 14 year old boy diagnosed 1 year ago (involved with education) Gender Boys don t have periods! Pubertal Status 12 year old girl who has regular periods is different than a 12 year girl with no periods Honeymoon 3
4 Everybody is Different Activities Track, softball, soccer, reading, drawing, riding a bike, video games etc. Food Preference Prepackaged foods vs. homemade foods Dietary restrictions Family members with T1D Easy to lump together Schedule Family Dynamics 4
5 Personalities Open Tests openly Does not mind technology Pumps, CGM Alarms for lows Indifferent More discrete with testing Ok with technology but doesn t want to stand out Silences alarms Secretive May test but hides refuses to do in front of people May refuse technology because perceived as different Will not allow alarms 5
6 Different Views Patient s Thoughts Diabetes can be frustrating Having diabetes can seem unfair Wish I didn t have diabetes I m starving People think I can t eat carbs because they think I have T2D I don t want to stop to check blood sugar Annoyed by parents Happy I have not been hospitalized Proud of my accomplishments Parent s Thoughts Scared of lows Afraid to let go Can t sleep because worried Exhausted Frustrated Supportive Proud 6
7 7
8 What Does this Mean? T1D effects the whole family Multiple studies have shown positive family interactions (warmth/ parents sharing in tasks) associated with optimal T1D management Prevent deteriorating adherence Families' with diabetes-related conflict Tend to have poor adherence and worse health outcome Higher rate of depression among T1D youth Linked to worse outcomes Psychology is an important aspect in some individuals care Williams, L. B., Laffel, L. M. B. and Hood, K. K. (2009), Diabetes-specific family conflict and psychological distress in paediatric Type 1 diabetes. Diabetic Medicine, 26: doi: /j x 8
9 We All Go Through Puberty Teenage years can be difficult without diabetes Diabetes adds extra stress at times Numbers fluctuate even if doing everything perfectly Goal total independence prior to graduating high school Use the support structure from home as you gain independence Shift of responsibility Gradual transition of responsibilities to teen Med refills Setting alarms to remind to test Dose adjustment suggestions? 9
10 Judgement Free Facilitate open discussion about blood sugar numbers If son/daugher gets scolded with high numbers then they will just lie Instead discuss why numbers may be higher and suggest things to work on Missed dose Snack Poor carb counting Set up reward system for compliance rather then punishment for bad numbers Clinic visits Often feel judged 10
11 Trust This has to be earned It can also be lost Parents have best interest at heart Weekly review of numbers Discuss numbers and suggest changes Ultimate goal Total independence Training wheels aren t always touching the ground but are there just in case. Same goes with parents of T1D 11
12 My Perspective on Diabetes TEEN Annoyed when asked if I tested Upset I had to go to the office at lunch and run late Angry I had to bring supplies and carry supplies everywhere Frustrated when I had to stop activities to test/treat low Confused why I had such different numbers without changing anything? Accepting Supported by family and medical team ADULT Same feelings as a teen at times Proud Impressed Frustrated Proud Excited Honored PROVIDER 12
13 Questions and Discussion 13
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