Child with profound developmental delay

a 2 year old female with an evalution at a major tertiary medical center only has a diagnosis of profound developmental delay. Much testing done, full details available on request. sound removed at parents request, but she was crying/wailing the whole time this was filmed. Posted with the hope somebody has a helpful comment about the unusual body posturing. Sorry for the poor quality video shot with my cell phone. Posted with the parents permission.

Category:

Nonprofits & Activism

Tags:

• developmental
• delay
• autism

[blessedmommy73]

the parents decision to exclude the sounds concerns me....why not? It could help give a more global picture..especially if it could have shown us her comfort level. I'm not a doctor...an RN with specialty is pediatrics..what about the possibility of Rett's Syndrome?

[jahrendsen]

@blessedmommy73 The parents wanted the sound removed because we were talking about other family members in the background and they didn't want that info public. The movement of the legs was the remarkable thing that I was trying to capture with this video.

[GunBroker100]

Have you contacted Children's Mercy Hospital in Kansas City, Missouri? They are an exclusively children's hospital and have a fantastic Pediatric Neurology center. They have pioneered treatments for problems previously untreatable. They saved one of my grand children, when every other hospital, including Mayo were stumped.

[jahrendsen]

@GunBroker100 I will pass your suggestion to the family. 

[TheTravelfool]

Why is the child just lying there? Why isn't she being stimulated with singing to her, having things shown to her, going on a walk, reading a book to her, etc.?

[jahrendsen]

@TheTravelfool this video really was just meant to capture this strange movement of her legs. She does receive interaction and stimulation with her parents and siblings. This was only a 2 minute segment meant to show the unusual posturing of the lower legs. Also of note, she is unable to walk, she still doesn't crawl.  I haven't seen her for some time now, but the mother occasionally emails me.

[blessedmommy73]

@ledfootbabe what kind of info would be helpful to you? Your question is too vague, if give more specifics it will help. Thanks! ;-)

[blessedmommy73]

@cameradan2 can you let me know as well please through my inbox? I'm a pediatric RN and any input would be appreciated. I am NOT working with this child but I DO work in the area of dev. delay and neurology in children. Thanks in advance.

[cameradan2]

Hi I have seen this movement and have information but afraid to post due to sensitive nature. Please contact me.

[jahrendsen]

@die920 dystonia is really a symptom and not a cause

[jahrendsen]

@hazelskin I did see the child about a year later, and she has progressed some. She can now sit by herself, and will do an army crawl to get across the floor.