Rett Syndrome-first dose of glycopyrolate and valproic acid-small seizure

Brianna is 8 years old with Rett Sydrome. In this video we are noticing that 15 min after the glycopyrolate it given she seems very "busy" cant seem to focus on one perticular thing. Breathing is very heavy and deep. She seems confused or overwhelmed by whats going on around her. This is not her usually behavior.

Category:

Education

Tags:

• rett syndrome
• seizures
• glycopyrolate

[6739913]

July20th....Is that some kind of sick joke? If you have a 16 year old daughter who needs constant care, then you should know how to change her diaper. And NO I will not post a video of my daughter being changed.

[6739913]

Brianna constantly "claps" her hands...it is an involunary movement, so sometimes we put the arm braces on to give her arms a rest or to work with her during physio therapy sessions.

[Lavinco]

So sorry she has to experience this. We have a daughter with r294x type Rett Syndrome. she is 3.5 today. I hope the cure passes clinicals soon.

[6739913]

@Lavinco  What cure?!?!? I didnt realize that they have had anything go to the clinical phase. Where are you located?

[aawood00]

God bless her. She is beautiful.

[dpark76]

What a beautiful girl. Our daughter was just diagnosed and we haven't stopped crying since.

[patatocchias]

Now how's the baby?

[malakoz]

my daughter has rett syndrome and i feel blessed to have her, my daughter is just like yours, she is moving all the time and then she starts sweating. she has medication that is sopposed to relax the muscles but she goes to sleep right after her meds and she takes them 3 times a day so i feel like i have no time to do phisio with her or do anything she is always sleeping do you have this problem?

[N330AA]

What a sad condition :(

[PinecrestRailroad]

@janineaaaaaaa The short answer is, after 20 minutes onsite we would remove such splints in order to check for pressure marks; I would choose to not be qualified to reapply such a splint and am not required to do so as a classroom teacher even if specially credentialed. The long answer is really a matter of philosophy, training, and experience facilitating learning for individuals who experience some of the greatest disabilities. Check my webpage.

[janineaaaaaaa]

@PinecrestRailroad Why?

[PinecrestRailroad]

@janineaaaaaaa Hand splints, especially for an individual as consumed by her movements as Brianna presents, are generally used to prevent an individual from doing things. Individuals with Rhetts's, for example, may spend great amounts of time wringing hands, at the mouth, drooling, macerating fingertips and hands. Therapists and parents (never a doctor) have tried to convince me that this is humane. In the classroom, when students would arrive with such splints we would remove them.

[janineaaaaaaa]

Is she always moving and twitching?  Must be exhausting.

[janineaaaaaaa]

@PinecrestRailroad The other videos show her constantly putting her hands near her mouth and her elbows are always folded. The splints probably keep her from doing this. May also have atrophied her elbows if they were always in that position.