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.

Helpful tips from others

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