I am looking for information on gait disturbance in children affected with OBPI. I am also interested in how posture plays a role in this. Anyone seen any articles, any information, and or experience?????
Thanks,
Brenda
Gait disturbance
-
Brenda333
- Posts: 217
- Joined: Mon Nov 18, 2002 6:59 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter has global palsy (c5-T1 injury) 5 surgeries at Texas Children's by Dr
Laurent, Shenaq, and Nath. 1st Surel graft 2nd Intercostal transfer 3rd Latisimus Dorsi transfer with subscapular release 4th Pec release 5th Bicep lenghtening, (which weakened her bicep, and contracture returned.) Has went through serial casting with fair results. Her arm is about a hand shorter then the other. She has limited hand function. (able to grasp) Arm stays pronated. Unable to get to neutral. Now dealing with sternoclavicular subluxation. All that being said....She is very functional. She is a very determined, strong, tenacious young woman. Now 15. She plays the trumpet, french horn, drums, guitar, and now learning piano. Has always played on a softball, and basketball team. Until recently, for fear of further injury due to the sternoclavicular subluxation. (separation of colarbone from sternum) Not sure if all this is spelled right.
-- - Location: Wisconsin
- Contact:
-
F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Gait disturbance
I think that Beverly Cusck of Theratogs may be collecting this data. I know that she will be attending the Narakas Symposium next week and will be speaking to all the international bpi specialists in attendance. I suggest you email her at bcusick@theratogs.com and talk to her about this.
I'm hoping that this kind of data will be added to the International BPI Database that some specialists are involved in. I don't know that there are any studies as of yet linking the "other" body issues that most of our kids seem to have with the bpi. Nancy [Birk] would probably have that answer though.
It will be a wonderful day when our specialists set up TRUE multi-disciplinary clinics that include full body evaluations (including ears, eyes, gait, structure, sensory, psychological & more) - someone needs to start viewing this injury as a whole child injury and NOT just something that affects the arm.
I'm hoping that this kind of data will be added to the International BPI Database that some specialists are involved in. I don't know that there are any studies as of yet linking the "other" body issues that most of our kids seem to have with the bpi. Nancy [Birk] would probably have that answer though.
It will be a wonderful day when our specialists set up TRUE multi-disciplinary clinics that include full body evaluations (including ears, eyes, gait, structure, sensory, psychological & more) - someone needs to start viewing this injury as a whole child injury and NOT just something that affects the arm.
-
Brenda333
- Posts: 217
- Joined: Mon Nov 18, 2002 6:59 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter has global palsy (c5-T1 injury) 5 surgeries at Texas Children's by Dr
Laurent, Shenaq, and Nath. 1st Surel graft 2nd Intercostal transfer 3rd Latisimus Dorsi transfer with subscapular release 4th Pec release 5th Bicep lenghtening, (which weakened her bicep, and contracture returned.) Has went through serial casting with fair results. Her arm is about a hand shorter then the other. She has limited hand function. (able to grasp) Arm stays pronated. Unable to get to neutral. Now dealing with sternoclavicular subluxation. All that being said....She is very functional. She is a very determined, strong, tenacious young woman. Now 15. She plays the trumpet, french horn, drums, guitar, and now learning piano. Has always played on a softball, and basketball team. Until recently, for fear of further injury due to the sternoclavicular subluxation. (separation of colarbone from sternum) Not sure if all this is spelled right.
-- - Location: Wisconsin
- Contact:
Re: Gait disturbance
Thanks Francine,
I will e-mail her. I am concerned over this, because of my daughter. I'm trying to think what could help her with this. Even considering poise/posture classes. If they still have those around.
Brenda
I will e-mail her. I am concerned over this, because of my daughter. I'm trying to think what could help her with this. Even considering poise/posture classes. If they still have those around.
Brenda
-
F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Gait disturbance
Another thing to check out would be a therapist who does the Alexander Technique - (and works with young kids) - this is postural work... but I think the togs are great because they actually remind the body all day long.
-
Brenda333
- Posts: 217
- Joined: Mon Nov 18, 2002 6:59 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter has global palsy (c5-T1 injury) 5 surgeries at Texas Children's by Dr
Laurent, Shenaq, and Nath. 1st Surel graft 2nd Intercostal transfer 3rd Latisimus Dorsi transfer with subscapular release 4th Pec release 5th Bicep lenghtening, (which weakened her bicep, and contracture returned.) Has went through serial casting with fair results. Her arm is about a hand shorter then the other. She has limited hand function. (able to grasp) Arm stays pronated. Unable to get to neutral. Now dealing with sternoclavicular subluxation. All that being said....She is very functional. She is a very determined, strong, tenacious young woman. Now 15. She plays the trumpet, french horn, drums, guitar, and now learning piano. Has always played on a softball, and basketball team. Until recently, for fear of further injury due to the sternoclavicular subluxation. (separation of colarbone from sternum) Not sure if all this is spelled right.
-- - Location: Wisconsin
- Contact:
Re: Gait disturbance
Nope, nothing in Wisconsin. Thanks anyway.
Brenda
Brenda
Re: Gait disturbance
Brenda,
I think the assymetry of our body leads to a lot of compensation in gait and how we hold and move our bodies.
I know this is the case for me.
I found that Feldenkrais also helped a lot and balance work like Tai Chi and Yoga are beneficial too.
Nancy
I think the assymetry of our body leads to a lot of compensation in gait and how we hold and move our bodies.
I know this is the case for me.
I found that Feldenkrais also helped a lot and balance work like Tai Chi and Yoga are beneficial too.
Nancy
-
Brenda333
- Posts: 217
- Joined: Mon Nov 18, 2002 6:59 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter has global palsy (c5-T1 injury) 5 surgeries at Texas Children's by Dr
Laurent, Shenaq, and Nath. 1st Surel graft 2nd Intercostal transfer 3rd Latisimus Dorsi transfer with subscapular release 4th Pec release 5th Bicep lenghtening, (which weakened her bicep, and contracture returned.) Has went through serial casting with fair results. Her arm is about a hand shorter then the other. She has limited hand function. (able to grasp) Arm stays pronated. Unable to get to neutral. Now dealing with sternoclavicular subluxation. All that being said....She is very functional. She is a very determined, strong, tenacious young woman. Now 15. She plays the trumpet, french horn, drums, guitar, and now learning piano. Has always played on a softball, and basketball team. Until recently, for fear of further injury due to the sternoclavicular subluxation. (separation of colarbone from sternum) Not sure if all this is spelled right.
-- - Location: Wisconsin
- Contact:
Re: Gait disturbance
Thanks Nancy. We have thought about going along some of those routes. Difficult to decide.... She tends to hold her arm out in front of her and her gait is awkward looking. Just trying to help her out anyway I can.
Brenda
Brenda
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Gait disturbance
Brenda
I had a great deal of work on my walk as a child.
I had to walk with a book on my head like models did in the good old days.
We did work on walking with toes straight in front and practiced steps... that still stands out in my mind so they must have spent a great deal of time on it.
During one growing spurt I could only walk on my toes of my right foot.
That caused a great deal of stress because they kept insisting I put my foot down flat and it hurt.
But that passed and I was able to walk normally again.
Now I wonder if it was from all the practice of putting my foot flat down on the floor.
My mother also constantly reminded me to keep my shoulders back and stand straight.
I think all the dance lessons and sports helped to improve my posture and walk.
I also have problems with my gait but I don't think it's that noticeable because I am so conscience of my posture in public.
I could never have used the togs due to sensory issues.
I wear all my clothing too big because I can't stand anything tight on my body.
I suggest you find a place to "try out" togs before you purchases.
Sensory issues could cause a child to be very uneasy and uncomfortable while wearing them.
I find if my clothing is not comfortable I am very distracted and can't sit still.
Just my humble opinion regarding togs.
They look and sound great but every time I read about them I squirm and realize I am one of the few who could not use them.
Kath adult/robpi
I had a great deal of work on my walk as a child.
I had to walk with a book on my head like models did in the good old days.
We did work on walking with toes straight in front and practiced steps... that still stands out in my mind so they must have spent a great deal of time on it.
During one growing spurt I could only walk on my toes of my right foot.
That caused a great deal of stress because they kept insisting I put my foot down flat and it hurt.
But that passed and I was able to walk normally again.
Now I wonder if it was from all the practice of putting my foot flat down on the floor.
My mother also constantly reminded me to keep my shoulders back and stand straight.
I think all the dance lessons and sports helped to improve my posture and walk.
I also have problems with my gait but I don't think it's that noticeable because I am so conscience of my posture in public.
I could never have used the togs due to sensory issues.
I wear all my clothing too big because I can't stand anything tight on my body.
I suggest you find a place to "try out" togs before you purchases.
Sensory issues could cause a child to be very uneasy and uncomfortable while wearing them.
I find if my clothing is not comfortable I am very distracted and can't sit still.
Just my humble opinion regarding togs.
They look and sound great but every time I read about them I squirm and realize I am one of the few who could not use them.
Kath adult/robpi
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
-
Brenda333
- Posts: 217
- Joined: Mon Nov 18, 2002 6:59 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter has global palsy (c5-T1 injury) 5 surgeries at Texas Children's by Dr
Laurent, Shenaq, and Nath. 1st Surel graft 2nd Intercostal transfer 3rd Latisimus Dorsi transfer with subscapular release 4th Pec release 5th Bicep lenghtening, (which weakened her bicep, and contracture returned.) Has went through serial casting with fair results. Her arm is about a hand shorter then the other. She has limited hand function. (able to grasp) Arm stays pronated. Unable to get to neutral. Now dealing with sternoclavicular subluxation. All that being said....She is very functional. She is a very determined, strong, tenacious young woman. Now 15. She plays the trumpet, french horn, drums, guitar, and now learning piano. Has always played on a softball, and basketball team. Until recently, for fear of further injury due to the sternoclavicular subluxation. (separation of colarbone from sternum) Not sure if all this is spelled right.
-- - Location: Wisconsin
- Contact:
Re: Gait disturbance
Kath, thanks for your insight on this. I'm not sure the toggle thing would work for my daughter either. She prefers bigger clothes, and still has some issues with the way things feel.
She faces more challenges when she has growth spurts. Then she becomes so very clumsy, even walking into walls. I won't even go into talking about stairs. UGH!!I really feel for her.
Thanks again.
Brenda
She faces more challenges when she has growth spurts. Then she becomes so very clumsy, even walking into walls. I won't even go into talking about stairs. UGH!!I really feel for her.
Thanks again.
Brenda
-
F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Gait disturbance
Just to give a different perspective on the togs and sensory issue. There is treatment for sensory issues. Basically, the treatment consists of all the things that make a child uncomfortable. They use tight things, heavy things, warm things, cold things, vibrating things, twirly things, bright lights, twirling lights and so much more. Maia has been in therapy for sensory issues for a long time, she's been able to conquer MANY things (as long as they are separate - but when you add them together she'd freak).
Togs made a huge difference for her. It was an immediate change. Yes, you would think that it would be uncomfortable, especially for her because she already has itchy, dry, and sometime eczemic skin. But it wasn't so at all. The togs almost IMMEDIATELY calmed her. Her attitude in school immediately changed. The teacher called me on it and asked what changed with Maia because her behavior was completely different. She told me that she seemed like she felt "better in her skin", her clumsiness was way less, her ability to move in the classroom was better, she wasn't bumping into kids or kicking them trying to get to the floor. She wasn't crying as much or getting upset as much. It was a huge change for her. Beverly herself calls Theratogs a "wearable hug".
Because we've had so much success concerning Maia's sensory integration issues with the "hug" that the Theratogs provide, I've actually found socks that also give pressure. They are special diabetic socks. Maia's feet (probably the most sensitive part of her body) are now shifting for her as well. These socks are really expensive considering how much one would normally pay for socks, but they are worth every penny for the hug.
Maia loves big clothes otherwise and still wears big clothes, but she loves her togs because she feels so much better when she wears them and she'll defend her socks with her life. If I haven't done the wash and all we have is dirty socks, she will choose a dirty pair over 3 dozen other clean socks in her drawer that she won't wear because the tight socks feel so much better.
togs link: http://www.theratogs.com
diabetic socks link: http://www.diabeticsockstore.com/store/ ... socks.html
http://enewschannels.com/2006/11/17/enc418_030710
Togs made a huge difference for her. It was an immediate change. Yes, you would think that it would be uncomfortable, especially for her because she already has itchy, dry, and sometime eczemic skin. But it wasn't so at all. The togs almost IMMEDIATELY calmed her. Her attitude in school immediately changed. The teacher called me on it and asked what changed with Maia because her behavior was completely different. She told me that she seemed like she felt "better in her skin", her clumsiness was way less, her ability to move in the classroom was better, she wasn't bumping into kids or kicking them trying to get to the floor. She wasn't crying as much or getting upset as much. It was a huge change for her. Beverly herself calls Theratogs a "wearable hug".
Because we've had so much success concerning Maia's sensory integration issues with the "hug" that the Theratogs provide, I've actually found socks that also give pressure. They are special diabetic socks. Maia's feet (probably the most sensitive part of her body) are now shifting for her as well. These socks are really expensive considering how much one would normally pay for socks, but they are worth every penny for the hug.
Maia loves big clothes otherwise and still wears big clothes, but she loves her togs because she feels so much better when she wears them and she'll defend her socks with her life. If I haven't done the wash and all we have is dirty socks, she will choose a dirty pair over 3 dozen other clean socks in her drawer that she won't wear because the tight socks feel so much better.
togs link: http://www.theratogs.com
diabetic socks link: http://www.diabeticsockstore.com/store/ ... socks.html
http://enewschannels.com/2006/11/17/enc418_030710