In this episode, we are joined by Professor Petrus de Vries, Sue Struengmann Professor of Child & Adolescent Psychiatry, Academic Head: Child & Adolescent Psychiatry, University of Cape Town, South Africa and Alexis Minnaar, English and Geography tutor at DawnCroft Alexis was diagnosed with Tuberous Sclerosis Complex, at the age of two. Prof. de Vries and Alexis graciously joined me to engage in a discussion on TAND, a phrase coined by Professor de Vries himself, which is an acronym for Tuberous Sclerosis Associated Neuropsychiatric Disorders and its one of the most challenging aspects of managing a TSC diagnosis and is a clinical manifestation of TSC, along with the other manifestations.

Recently, Professor de Vries’ along with Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) were awarded funding from the Tuberous Sclerosis Association and the King Baudouin Foundation for the TANDem project, which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment. The two-part project will first focus on the development of a self-report TAND checklist and identification smartphone app, to measure how people are affected by TAND. The second part of the study will investigate the best ways to treat TAND, including agreement on suitable clinical guidelines for TAND. Following this work in identifying and treating TAND, the TANDem Project will help to prepare a global team of TAND researchers to raise awareness and lead future research into TAND.

Bringing both Alexis and Professor de Vries together to discuss their lived experiences with TAND in a Q & A session to bring to light the perspective of patient, doctor and a parent, to hash out the very different experiences. Professor de Vries coined the term TAND when in need of a succinct way to sum up the grouping of symptoms in a way that is easier for families also to talk to others about.

“It can be easier to say; “I have, or my child has epilepsy or I've got something on my skin or got a kidney thing” than to talk about anxiety, about mental health issues and about learning issues and about all sorts of stuff like that. So, the journey to share often takes even longer for people about those kinds of things. And that's why it was so important for us to find a way of building a kind of a language around TAND. And to give the message, the simple message to people is that TAND is as much part of tuberous sclerosis complex as all the other things are. And therefore, it's not something to be ashamed about or shy about or embarrassed about. This is something that we need to know about them that we can do something about. And so that really is, you know, you you're talking about how do we how do we put down on a level playing field with all the other things, it's just as important and just the same as all these physical health problems that people have learned to talk about and have learned to treat in a better way. And so for many decades, very little research was done on behavior and psychiatry and mental health. It was, in 2012, when we had the consensus conference in the US to revise the diagnostic criteria and to revise the treatment guidelines that we the neuro psychiatry group that said, What? We've been trying to tell people to do these things, and nobody has been doing anything. What can we do to make it simple, so that people might start to listen to us? And the one thing we realized was, we've been talking about know, you have to think about the behavioral issues and the psychiatric issues and the academic issues and the intellectual issues and the psychosocial issues. And you know, by the time I said that whole sentence, people aren't listening to me anymore. And so that was why we decided we needed to come up with a simple term that puts all these things together. And that was the birth of the word TAND, which stands as you know, for TSC, associated neuro psychiatric disorders across all those different levels. We wanted a simple word that you and I can talk about TAND in one word, and then we can start to break it up, rather than to talk about all these fuzzy words that in a psychiatrist often like to talk about, that nobody follows. Right? So that was really the reason to give us that you can talk about it.”

Alexis shares her own lived experience with TAND as well; “(my mother) She said I was having temper tantrums at school starting at about age seven. And she actually got to a point where she had to speak to my doctor say, look, you know, is it the TSC that's causing this or is it anger, or is it discipline issues? Or, you know, how do I deal with this? And so, my pediatric neurologist, her advice at the time was-there's no excuse for bad behavior. So, my mom had to put me on a strict discipline, freedom within boundaries sort of routine. I had strict routines in terms of schooling. Whether I was homeschooled or not, you know, you wake up at seven, you started school at eight, you work 'til two. And after that, you could do what you wanted. You took your medicine at seven, you know, they were they were structured systems in place so that I didn't have an excuse, and it's been very helpful. I did go through the TAND checklist last night, actually. And I kind of giggled because I realized I do kind of struggle to in terms of organization, I think you called it executive functioning”

I am personally passionate about TAND because of the impact it had on our entire family. There tends to be a ripple effect when dealing with a lot of dysregulated and unpredictable behavior on top of seizures for long time periods and the whole family develops dysfunctional ways of coping. So when I heard Professor de Vries talk about TAND, first on YouTube and then in person at the World TSC Conference in 2017 in Dallas, the entire history of our life with TSC started to make more sense.

More regarding the TANDem project; “And so what the TANDem project will do is three things: One, we're going to make a self-report version of the checklist, so that you either as a parent or caregiver or an individual that lives at TSC can fill it in yourself. Two-then we're going to put it into an app so that you can download an app and fill it in on the app. Three-And then we are going to create an expert group of people, consensus guidelines for treatment, next steps interventions for all these seven clusters of TAND difficulties. And then we're going to build them into the app so that when you sit down and you fill in the app for yourself or for your son or daughter, and you click on it, it will show you your child’s cluster profile. And you can click on it and it'll tell you what you can do about your that specific type of manifestation. And it will also tell you what the clinicians and the physicians ought to be doing as the next steps for your TAND profile. The TANDem project is just starting. We will create a website. And as soon as there are updates, we will inform people like you and the TS Alliance and the TCI, etc. So, the people just follow the story and give us input into the progress of the project over the next four years. It’s funded for four years by a Belgian foundation. It's called the King Baudouin Foundation. And they have funded us basically to develop this app, to validate the app and we will use people in the US and different parts of the world to make sure that we have something that we think is a good product that can then be launched for anybody in the world to use towards the end of the project. So that's the idea. You can see it's very practical. And it's really about empowering families and people who live with TSC. Because we know we can't wait until you can get somebody who knows about TAND- we need to give you the tools. I also don't want everyone to think that TANDem will solve all the problems of TAND in the world, but I think it's the kind of next step that we're taking in the community with people in the community that I'm really excited about.”
From Alexis: “Education is where my heart lies for kids with TAND or any other genetic disorder, autism, anything else of because there is none in South Africa. All the children get sent to a special needs school and they get cheated and it’s frustrating.”

Thanks for listening and many many thanks to both Professor Petrus de Vries and Alexis Minnaar for being willing to engage in this important conversation and shed some light on the lived and learned experience of TSC & TAND. WE will be watching and waiting to hear more on the TANDem project as it develops. Find us at: https://tsctalks.com

Professor Petrus de Vries’ links:
University of Cape Town: http://www.psychiatry.uct.ac.za/psych/staff/petrus-de-vries
Centre For Autism Research: http://www.cara.uct.ac.za/petrus-de-vries
TANDem press release: https://www.tsalliance.org/international-tand-research-project-awarded-funding/
Professor de Vries discussing TANDem: https://www.facebook.com/watch/?v=699529333889383
Recent article: https://www.spectrumnews.org/opinion/viewpoint/offer-support-young-autistic-children-south-africa/
Instagram: https://www.instagram.com/profpetrusdevries/
TSC South Africa: https://www.facebook.com/TSSouthAfrica/

Alexis Minnaar links:
Blog: http://theycallmetsc.blogspot.com/
Facebook: https://www.facebook.com/alexisbilyard
Living with TSC Facebook: https://www.facebook.com/theycallmetsc/
Instagram: https://www.instagram.com/they_call_me_tsc/
Previous podcasts on TSC Talks: https://www.spreaker.com/episode/18952329 and https://www.spreaker.com/episode/19010713