Q&A From Parent Survery
What one thing would you like to share with a newly diagnosed family about living with CSNK2b Neurodevelopmental Disorder (POBINDS)? What would you like them to know?
Welcome!
It’s going to be ok
there’s a beautiful community on Facebook with empathic, friendly and helpful people. don’t be afraid to share your experience, feelings and fears
While the diagnosis is life changing, it’s not life ending
There’s a lot of variability in the disease your experience will be different than others, take it each day at a time.
Our children show us what matters most. Even when your heart is breaking over all their struggles you can find joy in the little things. Grieving the life you hope your child would have doesn’t mean you don’t love and cherish them. Grief is an expression of love.
Your child will make you proud
Take life day by day, celebrate the accomplishments, and work hard to improve quality of life.
Welcome, you are not alone in this diagnosis.
Take care of themselves. (The caregiver)
That POBINDS doesn’t hold her back, she says “I have special genes but not the kind you wear!”
Don’t let the diagnosis define your child.
Every child is different. Don’t let a diagnosis limit your child, use it to get support for symptoms.
Your child is still your child, and you are the world expert in what they need. Just now you have a name for what you are all dealing with
What interventions or therapies do you recommend others pursue based on how they have helped your family member?
Speech/Language Pathology/Speech Therapy/Communication technology
Occupational Therapy
Physical Therapy/Physiotherapy
Early Intervention
Therapeutic Horse Riding/Equine Therapy
Developmental pediatricians, orthopedic support
ABA for behavior
List three things your CSNK2b Neurodevelopmental Disorder affected family member enjoys. (for potential word cloud)
Horse riding, eating, mountain activities
Fishing watching movies, just being together
activities (playgrounds access, access to museums, places to visit) mobility (need a stroller but some roads aren’t adapted to strollers) many doctor’s appointment to go to that take a lot of time.
Playing soccer, playing with friends/family, art
Screen time, sand, food, water play, beach
She loves her peers, playing with Barbie’s and dancing/listening to music.
Gaming, travelling, friends and family
She loves her walker, toys on the floor, standing activity table, tags, textures.
Video games, traveling, hanging out with friends and family.
Playing outside, playing games, being with family
Helping others, coloring, watching movies
Music, reading, playing
Building, outdoors, swimming
Eating out, watching sports on TV, animals especially pets
List 3 positive attributes of your CSNK2b Neurodevelopmental Disorder affected family member to complete the sentence “People with CSNK2b Neurodevelopmental Disorder are…” (for potential word cloud)
Always wearing a big smile, memorize everything, always moving
Kind, happy, loving
strong minded, brave, always helping others
Smart, loving, fun to be around.
Very sweet
Innocent, loving
Loving, kind, funny
Affectionate, helpful, funny
Loving, sweet, happy. She doesn’t know any different.
Happy, funny, resilient
Hard workers, loving, funny
Caring, brave, strong
Funny, creative, unique
Very happy, friendly, loving
Friendly, happy, resilient
Do you have a current concern or challenge related to CSNK2b Neurodevelopmental Disorder that you would like to share? Please put it in the space below. No not, indicate “no”.
Communication
Our daughter tries to go to a normal school but she’s getting behind and it’s really hard for us as parents to keep up with her progress or help her when she doesn’t progress. we don’t know how to help her.
-Intellectual disability
Developmental delays and seizure control
Lack of impulse control
Our daughters seizures are our biggest concern. Her seizures directly effect her development, health, –quality of life, and intellectual abilities.
Seizures and fatigue
Our biggest challenge is seizures and intellectual disability
School and friendships are difficult for her
Trying to find a medicine to help with our child’s seizures has been the hardest challenge for our family.
Communication difficulties
4 “no”
Do you have a long-term concern or challenge related to CSNK2b Neurodevelopmental Disorder that you would like to share? Please put it in the space below. No not, indicate “no”.
-Independence
-Her scolarity worries me. I hope she can graduate and find a job and love on her own later
-I’m worked what her future will look like.
-How will this develop over the years?
-Non verbal
-How the syndrome will present as she matures.
-Addiction
-Our long term concern is also seizure control as it effects all aspects of this disorder. Also, resources to help with quality of life. Syndrome recognition for adequate studies.
-Cognitive impairment requiring lifetime support
-Intractable seizures
-Lifelong care
-Not knowing what the future holds for our children.
-Difficult to understand
2 “no”s
Please suggest a topic for our occasional virtual family meetings.
-Communication technology for those who are not able to use current language.
-Communication
-Financial help in our different countries
-Fostering good relationships between affected child and neurotypical siblings. It’s hard to find a balance.
-Different stages of life, idea is to target patients to join in different stages of life (or parents) and tell about their specific challenges with growing up/school/work/life
-Personally I’d like to learn more about potential pathways to provide treatment for the disease
-Caregiver support
-Attention deficit
-Resources for families for early detection, adequate therapies to improve quality of life, sleep improvement.
-Seizure management
-I’ve only attended one, but please have time every meeting even with a guest speaker for families to just connect
-School
-Ways to talk to your children, family and friends about your child’s condition.
-Info on the CSNK2b Foundation
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