- Wiedemann-Steiner Syndrome
- Interviews
Kim's interview
How did all start?
My son was not eating well and was behind in his weight and height.
Do you already have a diagnosis? How long did it take you to get it?
We have one now. It took 6 years of genetic testing to find out. Prior to his WSS diagnosis he went through a plethora of tests, surgeries, etc. for his symptoms.
Big thing, is too look for extra hair on the elbows and/or back.
For what medical specialties have you been treated? What has been the most useful specialty for your?
My now 10 year old son( 2017) has had a plethora of problems including: Intellectual disabilities, gastrointestinal issues (constipation, lack of appetite, bloating), Chiari I malformation, hypotonia, extra hair on his lower back and elbows, hypospadias (now corrected), sleep apnea, ADHD, extreme anxiety including going to the doctors and hospitals, behavorial problems, small in height and weight, occasional knee pain, sensory processing, unable to toilet train and others.
Psychiatrists
Gastrointestinal
Neurology
Neurosurgeon
Neuropsychologist (Nuero. eval).
OT, PT and Speech
Ear Nose and Throat specialist
Sleep studies,
Behavioral therapist
and other
ALL
What has been the most useful thing for you so far?
Facebook page for WSS parents.
What have been your biggest difficulties?
figuring the whole thing out prior to WSS diagnosis. Now it is behavior and toilet training at age 10.
How has your social and family environment reacted? Have your social or family relationships changed?
My inlaws and parents found it difficult, especially that he couldn't potty train. The only really good advice I have is "Do what is BEST for your immediate family, not because of what society thinks. My son still sleeps in our bed and still uses pullups at age 10.
What things have you stopped doing?
Fun things for me, my husband and my other son.
What do you think about the future?
How well will he fit into society and the vulneralability that lies ahead for him. I can't stress enough look into their future i.e. what types of housing they might need, do you need to go through social services and is there a big wait list. Start now. Plan ahead: "what will happen if I were to pass away". What plans are in place. Learn about special need trust funds, etc.
So far, which years have been the best years in your life? What have you done during them?
Well with this condition just enjoying his affection and funny moments. Watching him acheive in his interests i.e music, reading, etc.
If you had to describe your life in a sentence, what would it be?
As a parent, it is a rollarcoaster of happy, sad, frustration, exhaustion,etc.
Finally, what advice would you give to a person in a similar situation?
Knowledge: educate yourself as much as you can on this condition and join the Wiedemann-Steiner facebook page.
Also learn about services in your area i.e
Waivors (set of free services)
Future housing for disabled adults
Future job opportunities
Wraparound Service
Etc.
