I am doing a poll with other BPI parents regarding some of the secondary or related issues with BPI. I am just curious as to how many of us out there are dealing with some of these issues. I am also trying to just open up some converstation about this because I think it is important for parents not to feel alone with some of these issues. My hope is that one day the doctors will study these and be able to give us more information about them and their relation. So here is the list. Please feel free to reply back with your answers if you feel comfortable doing that.
BPI Secondary Issues:
Redness, hot to the touch, or swollen arm (BPI affected arm)
Skin problems (BPI arm only)
Sunburns easily
Pain in the arm
Mutiliation of the arm (Scratching, biting, ect)
Muscle Weakness (BPI arm only)
Sweating (BPI side/arm only)
Circulation/Lymphatic system issues (BPI arm/side only)
Inability to control the temperature of their arm
BPI/Traumatic Birth/Surgery Related Issues
Hypotonia (throughout the body not just the arm)
Diaphragm or Breathing Issues (Asthma, Sleep Apnea, Lung Problems, ect)
Vision Problems (Horners related or not)
Skin Problems (throughout the body not just the arm)
Balance or Gait Issues
Feeding and/or Swallowing Problems
Sensory integration Issues (proprioceptive, vestibular, visual, auditory, tactile, or olfactory)
Excessive Sweating (throughout the body not just the arm)
Tortocolis
Hearing Loss or Ear Infections (Beyond the norm)
Scoliosis
Speech Problems or Delays
Apraxia or Motor Planning Problems
Coordination Issues
Developmental Delays
Learning Disabilities
Digestive Problems (i.e constipation, reflux, ect)
Behavioral Problems
Sleeping problems (apnea, night terrors, not sleeping through the night, ect)
Any other issues that you are dealing with that have not been mentioned here? I really think it is important that we start talking about some of the similarities. Not trying to compare children, but just curious how many may be dealing with some of the same things. Thanks for your help and participation.
Poll Regarding Secondary or Related Issues
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DianaLB1999
- Posts: 22
- Joined: Tue Nov 04, 2008 10:38 pm
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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: Poll Regarding Secondary or Related Issues
Diana, may I suggest that you post your email address for the folks who may want to respond to you privately.
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DianaLB1999
- Posts: 22
- Joined: Tue Nov 04, 2008 10:38 pm
Re: Poll Regarding Secondary or Related Issues
My e-mail is DianaLB1999@aol.com for those that would like to respond privately. I can totally appreciate anyone who wishes to discuss this privately and greatly appreciate your input.
Diana
Diana
Re: Poll Regarding Secondary or Related Issues
Diana:
You have compiled a very complete list.
You might want to do a search of the website, we have discussed these issues many times... especially since some of them come and go. Some of them stay forever.
You might also want to add: tooth/jaw misalignment and growth.
claudia
You have compiled a very complete list.
You might want to do a search of the website, we have discussed these issues many times... especially since some of them come and go. Some of them stay forever.
You might also want to add: tooth/jaw misalignment and growth.
claudia
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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: Poll Regarding Secondary or Related Issues
You can also search Sensory Intergrations. It seems to be a big problem for many of us.
I could answer yes to so many of the issues above. A big issue for the children is frustration because they must compensate for the ordinary tasks in life.
I could answer yes to so many of the issues above. A big issue for the children is frustration because they must compensate for the ordinary tasks in life.
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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jmar
- Posts: 528
- Joined: Tue Aug 10, 2010 3:43 pm
- Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.
Re: Poll Regarding Secondary or Related Issues
one problem that i have not seen on this sight is thoracic outlet syndrome. i realize that with bpi, the nerve itself is damaged. but if the shoulder is out of place or hanging there with no control, it can cause a healing nerve to be pinched in the shoulder area. this is called thoracic outlet syndrome. or if there is an extra thoracic rib, it can also cause problems with an already problem area. if you google the words thoracic outlet syndrome, there is a lot of info on it.
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DAC2047
- Posts: 4
- Joined: Mon Jan 10, 2011 12:54 am
- Injury Description, Date, extent, surgical intervention etc: Nanna to ROBPI
Re: Poll Regarding Secondary or Related Issues
I am bumping this up. We really are interested in hearing what other's have to say regarding these secondary issues, and weather or not any of you have experienced any of these. so please if you don't mind sharing we would love to hear from you.
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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: Poll Regarding Secondary or Related Issues
Bumping Up for new families....& we Adult OBPI-ers often need reminding & review for not Over-using our bodies. When we do we can trigger some of these secondary medical issues.[ I've done alot to further injure my body 
]
Carolyn J
LOBPI/72
]Carolyn J
LOBPI/72
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siobby
- Posts: 28
- Joined: Sat Mar 05, 2011 7:26 am
- Injury Description, Date, extent, surgical intervention etc: My son was born 14/10/10 with shoulder dystocia as a consequence has brachial plexus palsy of the left side. He has no elbow flexion or supination. Exploratory surgery on 30/03/11 found significant neuroma's to C5 & C6. Nerve Grafts were required and we are now anxiously awaiting results.
- Location: Brisbane
Re: Poll Regarding Secondary or Related Issues
Hi, my baby boy gets dry skin on the upper part of his arm, it is the only place on his body he gets it. I also noticed over the christmas period when his accupuncture sessions stopped that his arm felt cooler than his other arm.
Siobhan
Siobhan
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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: Poll Regarding Secondary or Related Issues
Siobhan,
It is a Common issue most of us Adult "OBPI-ers" have confirmed there is less/ read poor, circulation in our BPI arms and hands. Also we sunburn easier on this arm and must be more aware in the sun.
Carolyn J 
LOBPI/72+++
It is a Common issue most of us Adult "OBPI-ers" have confirmed there is less/ read poor, circulation in our BPI arms and hands. Also we sunburn easier on this arm and must be more aware in the sun.
Carolyn J
LOBPI/72+++