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Medical Videos & Podcasts => Topic started by: Adminஐﻬ on January 19, 2009, 04:36:16 pm => Medical Videos & Podcasts => Topic started by: Adminஐﻬ on January 19, 2009, 04:36:16 pm|
Title: Presley - Battle with Neonatal Lupus Post by: Adminஐﻬ on January 19, 2009, 04:36:16 pm :sobbing: Have a hanky ready.... What a precious babe!
http://www.youtube.com/watch?v=5Ksr6h4NaJ0 Title: Re: Presley - Battle with Neonatal Lupus Post by: Adminஐﻬ on January 19, 2009, 05:39:27 pm Dystonia~ http://www.torticollis.org/
Some of you who know me personally, know that I have what is called "Dystonia Storms" There is no warning, generally it starts at the back of my head like my head is on a string and someone is pulling that string to make my head go backwards. What is known to trigger mine is cold weather and stress. My first Dystonia attack happened on our wedding anniversary about 6 yrs ago.In public of all places, we were celebrating our wedding annivesary up at Jackson Ranch Casino. Dave took me immediatly to our room. When I warmed up and calmed down and after I slept, I felt like nothing had happened. It is during the Dystonia attacks that it is sooooo painful. Kind of like having my Grand Mal seizures, after cleanching my jaws during an episode I would sleep for 4 hours with my jaws aching and a horriable headache..(I've had those since I was 16 yrs old) Like Lupus, there is no cure, the old Artane med used for Parkensons disease patients. It works for me to help ward off Dystonia attacks. Dystonia is a nuerological disorder. To give you a visual of what my Dystonia looks like, I found the best video closet on You Tube. I had Dave come look through videos with me so I can show you. He said in this video http://www.youtube.com/watch?v=BXgNY1cdJKE&feature=related my neck and throat is doing what Amy's is doing exactly looks like it. (NOTE~I have photos somewhere of my attack happening showing my throat doing what Amy's is doing Her You tube is http://www.youtube.com/ShakeyAmy) My Dystonia actually starts with either one or both sides of my neck being pulled backwards or/and my left shoulder shaking uncontrollably. Then my facial muscles are pulled back thus creating my face appear flat during an attack. I cried when I saw this video when Amy was trying to breathe as that is one thing that made me remember what it was like, you feel you are being suffocated.I haven't had an attack in a few years. (Knock on wood) But after I posted this video on baby Presley I got to thinking, "maybe some of the readers don't know what Dystonia is". ~Kathy Title: Re: Presley - Battle with Neonatal Lupus Post by: AmyTx on January 27, 2009, 01:31:37 am thought i would let you know i have been talking with presleys mom and from the damage lupus did so early on she now has cerebral palsy..
Title: Re: Presley - Battle with Neonatal Lupus Post by: Adminஐﻬ on January 27, 2009, 10:14:12 am thought i would let you know i have been talking with presleys mom and from the damage lupus did so early on she now has cerebral palsy.. Amy,Thank you for telling us that. Do you know what the Dr. concluded which Presly has, the spastic diplegic cerebral palsy or dystonia? Or both? She sure is a beautiful girl who tugged at my heart. Title: Re: Presley - Battle with Neonatal Lupus Post by: AmyTx on February 06, 2009, 02:31:18 pm she has spastic diplegic cerebral palsy bbbut she also has dystonia too..
Title: Re: Presley - Battle with Neonatal Lupus Post by: Adminஐﻬ on May 26, 2009, 02:18:02 pm bumping up a baby who has lupus.
educate us all in Neonatal lupus Title: Re: Presley - Battle with Neonatal Lupus Post by: lupusjoy on May 30, 2009, 03:50:15 pm OH WOW AMY ,YOU AND THE FAMILY ARE IN MY PRAYERS :angel:AND NO THAT GOD WILL BE WITH YOU ,AND THE FAMILY THREW THE GOOD, AND THE BAD TIMES BUT MOST OF ALL WE HERE ON THE LOOP WILL KEEP YOU IN PRAYERS ,BECAUSE WE UNDERST,AND WHAT YOU AND THE FAMILY ARE GOING THROUGH ,STAY BLESSED :angel:,AND NO THAT I LOVE YOU AND THE BABY AS WELL((TESA))
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