Hello everyone. I am mommy to Nicholas 6 yrs LOBPI. I am posting a message here b/c my husband and I don't know how to help our little soldier. From time to time, he tells us that his thumb is twitching and he tenses in a great deal of pain. Motrin has helped in the past, but this time it has not helped. They wanted to put him on Neurontin, but we refused that route for now. Do any of you ever experience this? If so, what can I do to ease my baby's pain? Any advice and input is greatly appreciated.
Thanks,
Natalie
Thumb Twitching
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nkjacoby
- Posts: 81
- Joined: Sat Jun 21, 2008 9:06 pm
- Injury Description, Date, extent, surgical intervention etc: Nicholas is 11 years old and his birth was complicated by a severe shoulder dystocia resulting in a severe LOBPI. He has had 5 surgeries to date with very little improvement. His left arm has never fully gained any functional use and has been completely flaccid until his last surgery. It now sits at a more natural position, but he is still unable to use his arm. However, his hand function was never limited until after his most recent surgery and is now completely limited due to an ulnar nerve entrapment. He is getting ready to have his 6th surgery in April to free the ulnar nerve from his last surgery. He is an amazing young man who never gives up on his dreams. He is my HERO!!!
Thumb Twitching
Mom to Nicholas 11 LOBPI, Dawson 7, and Kalyssa 5
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Thumb Twitching
Just curious as to why you don't want to try Neurontin? I know other parents on here have tried it on their kids and it has worked well. Low dose, no side effects...
You can try heat on it, one of those microwave "rice/bean" bags.
Marieke 33,LOBPI
You can try heat on it, one of those microwave "rice/bean" bags.
Marieke 33,LOBPI
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Master DIVER TOM
- Posts: 759
- Joined: Tue May 05, 2009 11:51 am
Re: Thumb Twitching
Please Do Not Get Mad At me? I never had surjury from my birth with erbs in 1952, there for my experance is base on my life at 57. I only want you to concider me as a gin pig Talking about erbs? First you are great parents trying to understand ERBS, There are many things with ERBS that are part of erbs erbs for sure. My doctor at 12 told me to try your best to have a life? I will now talk about a life with out choise! I had to work and find a way by 15 to pay for food, ect. I came from a broken family at 12, My Mom tryied but Woman Did not get great salary back then. Enough,
Your Chid like me will be sugect to limitations for sure. They will find things that your child cant do with the erbs arm for sure. If you choose a surjury out come should be base on on the doctor and patiant outcome from surjury? I hope I am not steping on toes here? I am sure that pulling on a Erbs arm after surjury is wrong for sure. But As a child comes home and wants to do something or try something with erbs. I drove a semi and a Master diver, I climb trees at 9. You can read my pass post, I did not have surgury, I talk like a dinasor with erbs. In my life it was always about findining a way to over come my limiation and joy or what was inpossed on me with erbs?
I hope I said this Right???????
Tom
Your Chid like me will be sugect to limitations for sure. They will find things that your child cant do with the erbs arm for sure. If you choose a surjury out come should be base on on the doctor and patiant outcome from surjury? I hope I am not steping on toes here? I am sure that pulling on a Erbs arm after surjury is wrong for sure. But As a child comes home and wants to do something or try something with erbs. I drove a semi and a Master diver, I climb trees at 9. You can read my pass post, I did not have surgury, I talk like a dinasor with erbs. In my life it was always about findining a way to over come my limiation and joy or what was inpossed on me with erbs?
I hope I said this Right???????
Tom
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Thumb Twitching
You could also try stretching it when he tenses it, to "break" the spasm. Sounds painful but it isn't once the spasm releases.
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Master DIVER TOM
- Posts: 759
- Joined: Tue May 05, 2009 11:51 am
Re: Thumb Twitching
Try a rubber ball to swezzes , It has me help on this and grasping a semi sterring wheel later.
Tom
Tom
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Master DIVER TOM
- Posts: 759
- Joined: Tue May 05, 2009 11:51 am
Re: Thumb Twitching
So I am exact, A small rubber ball, to squezz. There will be crapping for sure in the hand but the grasp for me got stronger for sure . But if you can gain grasp it help latter in life for sure. I remember holding a stuff aniamal when I slept I was still holding on to it when I wauk up in the morning. I think it connected my brain to the erbs arm more? Hope this helped?
Tom
Tom
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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: Thumb Twitching
Natalie
I use to get cramps in my hand and still get shock like pains. I don't use drugs for it but warmth really helps. I was given vitamin B complex on a daily basis as a child for the nerve injury. That was what they used in the good old days. I still get b-12 shots to keep my nerves from dancing around my arm. Vitamin B is essential for good nerve health. My family doctor felt stress depletes B and pain creates stress ... so I was on a Vitamin B all my life. When I stop is when I get into trouble again. Maybe it's mind over matter ... I don't know but it's safe and works for me.
When the cramps, in my hand and biceps, would suddenly come out of nowhere someone in my family massaged my arm. If you can get him in a warm bath and then try massaging his arm and hand with arnica oil or any warm oil perhaps it will help. Since he is little you would not want to use Mineral Ice on his hand for fear of him touching his eyes in his sleep,
We get all sorts of weird nerve pains due to the mixed brain messages. It seems that no two obpi injuries heal the same so each of us gets different nerve pains.
I'm not sure holding a ball in a cramped hand would help. My hand was closed tight as a child and they gradually placed different size balls in it. This was done so that my hand would stretch and would eventually be able to stay open. My hands shook quite a bit when I was younger and not so much as I matured. Unless I was sick and then my arm would and still does act up.
I hope this will help a little.
Kath robpi/adult 69
I use to get cramps in my hand and still get shock like pains. I don't use drugs for it but warmth really helps. I was given vitamin B complex on a daily basis as a child for the nerve injury. That was what they used in the good old days. I still get b-12 shots to keep my nerves from dancing around my arm. Vitamin B is essential for good nerve health. My family doctor felt stress depletes B and pain creates stress ... so I was on a Vitamin B all my life. When I stop is when I get into trouble again. Maybe it's mind over matter ... I don't know but it's safe and works for me.
When the cramps, in my hand and biceps, would suddenly come out of nowhere someone in my family massaged my arm. If you can get him in a warm bath and then try massaging his arm and hand with arnica oil or any warm oil perhaps it will help. Since he is little you would not want to use Mineral Ice on his hand for fear of him touching his eyes in his sleep,
We get all sorts of weird nerve pains due to the mixed brain messages. It seems that no two obpi injuries heal the same so each of us gets different nerve pains.
I'm not sure holding a ball in a cramped hand would help. My hand was closed tight as a child and they gradually placed different size balls in it. This was done so that my hand would stretch and would eventually be able to stay open. My hands shook quite a bit when I was younger and not so much as I matured. Unless I was sick and then my arm would and still does act up.
I hope this will help a little.
Kath robpi/adult 69
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Thumb Twitching
Stretching like Marieke said really helps. I hace a variety of balls of DIFFERENT textures and colors too to keep on my hand at my asge of 71 my hand contracts and is painful. "Lefty" just knows when i've forgotten to put a ball in my hand after using it TOO, to do something.
My 2 Cents!
Carolyn J
LOBPI
My 2 Cents!
Carolyn J
LOBPI
Carolyn J
Adult LOBPI
Adult LOBPI
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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: Thumb Twitching
Carolyn
You just pointed out the differences we all have in our healing process. I no longer have to hold the ball in my hand and have not had to since I was a small child. At almost 70 the only time my hand curled since I was a child was after the birth of my third child. That was when I was 32 and it last for several months. My family doctor said that my nerves got a bit upset when I gave birth that time.
You still need your... This just proves how differently we all heal... Thanks for making that point.
Kath robpi/adult 69
You just pointed out the differences we all have in our healing process. I no longer have to hold the ball in my hand and have not had to since I was a small child. At almost 70 the only time my hand curled since I was a child was after the birth of my third child. That was when I was 32 and it last for several months. My family doctor said that my nerves got a bit upset when I gave birth that time.
You still need your... This just proves how differently we all heal... Thanks for making that point.
Kath robpi/adult 69
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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nkjacoby
- Posts: 81
- Joined: Sat Jun 21, 2008 9:06 pm
- Injury Description, Date, extent, surgical intervention etc: Nicholas is 11 years old and his birth was complicated by a severe shoulder dystocia resulting in a severe LOBPI. He has had 5 surgeries to date with very little improvement. His left arm has never fully gained any functional use and has been completely flaccid until his last surgery. It now sits at a more natural position, but he is still unable to use his arm. However, his hand function was never limited until after his most recent surgery and is now completely limited due to an ulnar nerve entrapment. He is getting ready to have his 6th surgery in April to free the ulnar nerve from his last surgery. He is an amazing young man who never gives up on his dreams. He is my HERO!!!
Re: Thumb Twitching
Thank you for your advice. My husband and I do not wish to put him on Neurontin b/c of possible side effects and the fact that he is only six. I just feel that if he were older it would be different. For now, we want to look into other alternatives.
His hand is fully functional. The only problem with his hand was a severe waiter's tip, which has improved. I am definitely going to talk to his pediatrician about vitamin b for him. Thanks.
His hand is fully functional. The only problem with his hand was a severe waiter's tip, which has improved. I am definitely going to talk to his pediatrician about vitamin b for him. Thanks.
Mom to Nicholas 11 LOBPI, Dawson 7, and Kalyssa 5