Topic: “TSC-Associated Neuropsychiatric
Disorders (TAND)”
Thursday, May 14, 2015
Presenter: Vicky Whittemore, PhD National Institutes of Health
TSC Connect call
Introduction by Mark Martin (TS Alliance Adult Task Force):
“Vicky Holets Whittemore, PhD is a Program Director in the Channels, Synapses and Circuits
Cluster at the National Institute of Neurological Disorders and Stroke (NINDS) at the National
Institutes of Health. In this position, Dr. Whittemore combines her basic neuroscience training
with her passion for helping individuals with epilepsy and genetic disorders to shepherd a
portfolio of grants on the basic mechanisms and causes of epilepsy, including genetic causes,
and sudden unexpected death in epilepsy (SUDEP).
Dr. Whittemore received a B.S. in zoology from Iowa State University and a Ph.D. in anatomy
from the University of Minnesota Medical School. She did post-doctoral training at the
University of California, Irvine, and a Fogarty Fellowship at the Karolinska Institute in
Stockholm, Sweden. She was on the faculty of the University of Miami School of Medicine in
The Miami Project to Cure Paralysis before turning to work with non-profit organizations after
her nephew was diagnosed with tuberous sclerosis complex. She spent 23 years working for
non-profit organizations including the Tuberous Sclerosis Alliance, Genetic Alliance, Citizens
United for Research in Epilepsy (CURE), and the National Coalition for Health Professional
Education in Genetics (NCHPEG). Dr. Whittemore joined the staff of NINDS in August 2011. Dr.
Whittemore also serves as the NINDS Liaison to the Office of Research on Women’s Health.”
Vicky Whittemore began by reflecting when at a conference sitting around with others in the TS
field thinking about how the neuropsychiatric issues is TS were unrecognized and untreated
more often than not. They were thinking about what they could do that was simple and
straightforward that would help raise awareness for both clinicians and families. A
questionnaire that is used in the Aids/HIV community to help raise awareness was mentioned
and that brought about the idea of a tool that a family could take to a clinician to start the
conversation also used by a clinician to ask the adult or parent if there are difficulties in specific
areas.
Vicky- TAND meant to be a two way tool for a family to bring in to the clinician
and for clinician to start the dialogue.
-
Some clinics have iPads so that when they check in they are handed the iPad to fill out
the checklist so they can go over it with the clinician.
Some of the questions are more appropriate for children, but want to make it so that it
can be used for anyone.
-
-
Question #3 begins to ask about behaviors and get into anxiety and depression that a
doctor may not ask.
 Do you have temper tantrums?
 Do you injure yourself?
 Do you have issues getting along with others your same age?
TAND allows you to have an open conversation.
Goes through the many different levels, used as an educational tool and for individuals
with issues that need to pay attention to these symptoms.
Specific for behavior depression, mood swings, not to deal with TS clinical issues, but
meant to focus on the behavior.
12 Questions on the checklist
Vicky- Looking at #7
-
It discusses difficulty with brain skills like not being able to concentrate well, can’t do
two things at once, example walk and chew gum at the same time.
Visual tasks, executive skills problems with planning organizing and being flexible in your
ways of thinking or getting disoriented as in not knowing the date or where you are.
Vicky opened up the call to question or thoughts regarding the checklist.
To locate the TAND checklist www.tsalliance.org search engine type TAND and it
will come up, below that is a video presentation by Dr. Petrus J de Vries you
might want to watch.
Vicky- Has anyone on the call used the TAND checklist?
-
Dena Hook explained how she has used it in the educational system
One recent example was for a college professor to understand a student with TSC
Talk about who developed and how TAND came about?
-
Published in Pediatric Neurology
Started with a conversation at a TS conference
Dr. Petrus J de Vries and student Lauren utilized it in South Africa and did psychiatric
evaluations to validate what the parents said.
Can be used in different outlets to help identify the behavior issues
Vicky gave the example of her son, Andy, now 25, had disabling anxiety in middle school
and high school, it was really difficult to convince anyone that the anxiety was real and
part of Tuberous Sclerosis. It was really difficult to get help and that these were real
issues.
Other examples of how TAND can be utilized?
-
One thing that it can be used for is employment since many employers don’t understand
what is going on and how it relates to TS.
-
Dena shared she talked to some adults that were having issues and discrimination was
occurring because the anxiety was related to TS.
Vicky- Do you think it would be helpful to modify TAND to be more for adults in
the employment environment and open up that conversation with employers?
-
Yes, think it would be helpful because things change. Someone might be fine for the first
5 years, but then something changes and employers don’t understand why.
Can get overwhelmed easily and sometimes just need to get away and need time to
regroup, these are the types of things that the checklist could help explain.
Have you found employers to be understanding?
-
No people don’t really get it so you learn techniques to cope.
Employers’ responsibility regarding employment, what should be disclosed and what to
expect in regards to understanding?
Law says you cannot be discriminated against for your disability
But, there are always ways employers can get around the law in how they treat you.
Disclose what you are comfortable with and what will allow you to do your job.
Don’t really want to go the route where you have to file complaint, but you may need
to.
Having resources like a modified checklist will help give an individual the leverage they
need to validate it is associated with TSC.
Have to disclose up front about the disorder in order for the employer to be ADA
compliant.
Is anxiety one of the leading symptoms of TSC? It can be so crippling and is it
common?
-
Absolutely, anxiety is common
Anxiety can also come from some of the physical manifestations and how other perceive
you
Having some of the physical manifestations treated can help build self-confidence and
assist with some of the anxiety
Skin manifestation do not help with anxiety
Should be treated for anxiety, have to find the balance between treatment and feeling
too drugged up.
Chronic anxiety can also increase anxiety
Feeling like an outcast increases anxiety
The anxiety and stress can lead to the headaches that don’t go away
People do not realize how sometimes what they say is hurtful and it can cause further
anxiety
Does the TAND checklist specify physical manifestations and how they can
relate to anxiety?
-
No the checklist focuses on neurological, rather than physical
-
Hearing a lot of the conversation is that a lot of increased anxiety from the physical
manifestations
Seems like it could assist clinicians when dealing with adult’s anxiety to specify what
some of the causes are.
Could possibly tailor the checklist more for adults to identify some of the more physical
symptoms that could be contributing to the anxiety and stress.
Is there any interest or opportunity to try and get the TAND checklist published
in a journal for the young adult or adult community?
-
Idea for tailoring the checklist to be used for an employer
Idea tailoring for adults and getting it in a journal that adult physicians would read
If physicians already know about TAND, it would be received better when brought in
Should be two separate checklists, one for infants and children and once for young
adults/adults.
Facial angiofibromas were mentioned, and although Vicky clarified she is not an
MD, discussed the topical cream, pill form Afintor, or laser treatments.
-
Want more information about the topical cream email Dena Hook at
dhook@tsalliance.org
Facial angiofibromas can really cause a lot of stress for the patient and caregivers
because of the appearance and how society view the angiofibromas
The TS Alliance offers a “business card” to be able to explain the symptoms of TS, that
will help educate and raise awareness.
Control on behavior medication, doctors are reluctant to describe anything, did
you run into that?
-
Yes, Vicky gave example of a time her son had crippling anxiety because the person he
would meet with wasn’t there. Or too much medications
Last Perspective talks about TAND, but the actual checklist wasn’t in it
Vicky asked: Depending which clinician you are talking to may or may not know
the specifics of the symptoms, do we feel that giving examples on the checklist
would be beneficial?
-
Good for someone transitioning from high school to young adult to allow teachers to
understand the disabilities.
Those with TS often look “normal” on the outside, but there are struggles going on
inside.