TAND Tips from Families

One of the key goals of the TANDem project is to develop a ‘TAND Toolkit’ of tips, suggestions and advice to families and individuals who live with TSC.

Below we list a few examples we received from families all over the world. Please help us by sending us your tips of what works for you! Your tips may help other TSC families too! Feel free to be as detailed as you like and feel free to add links to helpful websites or resources.

Have TIPS?

Helpful tips from others

Erin Campbell

Child & Adolescent Psychiatrist, MBChB, FRCPsych, PhD Dr Erin Campbell Division of Child & Adolescent Psychiatry, University of Cape Town, South Africa Erin holds a BSc in Chemistry, an LLB (law degree), and is a medical doctor. She was affiliated with the Centre for Autism Research in Africa (CARA) at the University of Cape Town from 2022 to 2025, where she worked on projects related to the development of open-source autism screening and diagnostic assessments, and caregiver coaching for children with autism. She joined the TAND consortium for the TANDem-2 project as a junior research fellow and PhD candidate. Erin contributed extensively to the launch of the TANDem-2 project, updating of the TAND Toolkit App, and the systematic review of TAND research.

Carla Fladrowski

Ms Carla Fladrowski Co-chair Tuberous Sclerosis Complex Association, Italy Co-chair European Tuberous Sclerosis Complex Association (E-TSC) Researchgate Carla first joined the Italian Tuberous Sclerosis Complex Association in 2003. A series of events in 2009 inspired her  to dedicate more of her to time helping those affected with Tuberous Sclerosis Complex (TSC). Carla initially took on the role of networking for the association between the different TSC communities around the world and getting to know their key clinicians. She is a founding member of the European Tuberous Sclerosis Complex Association (E-TSC) which was reestablished in Naples in August 2012. Over the years she has aimed to develop her skill portfolio to ensure those she represents are provided with first class care, dignity and respect in treatment. E-TSC projects: Co-Creator

Dysregulated behaviours

“Like I mentioned, devices are an issue for us. My son can be engaged, focused, happy, pleasant if he does not have any device time. If he does have some device time (either gaming or TV, 20min or 2hrs), he is irritable, does not focus, can disengage himself from us, seems to pretend play in his mind. I’d like to get an understanding of what is happening in his brain. To identify what is being triggered to cause such a different personality? And then how can we help him self-regulate. I have some tricks to try to help him and we strongly limit his device time… Devices are the only thing that trigger this negative mood and it’s a drastic difference from his normal sweet manner.”

Active participation in clinical consultations

“Since my children were old enough to talk, I have tried to include them in doctor appointments with their neurologist or the pediatrician. To engage them and guide them to self-advocate. I would not want them to zone out through the years while adults are talking and then one day tune in and have to be part of the conversation. I imagine this toolkit could be an easy source to help him self-advocate and to learn or digest more of TAND clusters that he may identify with.”

Dysregulated behaviours

“Track ABC data (A = antecedents; B = behaviour; C = consequences). Many families are still using that data as it helps to try to identify “root” problems to behaviours. This data should be shared with the team as you work to find a balance of behavioural services and medication.”

Dysregulated behaviours

Self-care is extremely important for caregivers. You must take care of yourself to take care of others. Exercise, therapy, time with friends and family away from loved one with TSC.

Submit Your Own Tips for Others




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