Dystonic Storm | DYSTONIA FACTS | Dr. Jean-Pierre Lin

In this video Dr. Jean-Pierre Lin from Evelina Children’s Hospital in London, UK speaks on dystonic storm. He lists the areas of the body that are commonly affected by dystonic storm. He speaks on the severity of dystonic storm. What parts of the body and organs that are impacted by these episodes. He goes further and describes the five grades of severity and who are more susceptible to dystonic storm and what can be done to manage this serious condition.
...
You can join in raising awareness, simply by liking, commenting and sharing the Dystonia Europes posts. As a rare disease, we need all the help we can get. Let's do this!!! 💪🧡
Social media:
FACEBOOK | dystonia.europe/
INSTAGRAM | @dystoniaeurope
TWITTER | @dystoniaeurope
WEBSITE | www.dystonia-europe.org
Inquiries:
[e-mail]
#dystoniafacts #dystoniaeurope #dystonia

[@DeeDee-pt1xr]

Very informative...mainly aimed at young children

[@Ladylili001]

Thank you for sharing. I'm wondering if my baby might be experiencing repeated dystonic storms. She has symptoms which our professionals have never seen before. They are calling her episodes "paroxysmal events". She experiences hypertonic states for a total of 6-8 hours each day. They are not seizures. I'm curious to know your thoughts?

[@Ladylili001]

kzbin.info/www/bejne/aHy7f4CXjK-kn68 Here is a video of her episodes. They were originally thought to be hyperekplexia. I found that the episodes happened regardless of stimulus.

[@FullTimePatient37]

I am so sorry...how is she now?

[@barnettajohnsonthepancakem3792]

hardly ever included with fibromyalgia and never treated for the pain with actual pain medication. Treated with literally anything else is a wide open doorway to patient abuse by undermedicating the patient. its cruel behavior by NPs and PAs to ignor patients pain.