Looking for support. My daughter has Erb's Palsy.
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SydneyRose
- Posts: 10
- Joined: Thu Mar 15, 2007 6:15 pm
Re: Looking for support. My daughter has Erb's Palsy.
Kathleen,
Thank you so much for your posting. It is great to have found this message board. It's difficult being home on maternity leave...I'm home with the baby all day and I just keep waiting for her to do something new or different with her arm. Very nerve wracking.
How has your injury affected your adult life? I know every case is different.
Thank You!
Gina
Thank you so much for your posting. It is great to have found this message board. It's difficult being home on maternity leave...I'm home with the baby all day and I just keep waiting for her to do something new or different with her arm. Very nerve wracking.
How has your injury affected your adult life? I know every case is different.
Thank You!
Gina
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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: Looking for support. My daughter has Erb's Palsy.
Hello Gina and Welcome to the UBPN Family,
I am also an Adult with a birth LEFT BPI who had no knowlege or even a name for my injuries until I found UBPN at age 65 3 yrs ago. Kath and other adults have changed my life with sharing our experiences growig up. I have also learned sooo much from all parents who share and posted here. Last year was the 1st time anyDr addressed my injuries(other than stating "Birth Defects" on med. records) and what I lived with all my life, when I consulted a BPI Specialist and got alot of questions answered. Just having things confirmed and getting alot of questions answered was sooo healing...it didn't matter that it is too late for surgery for me, (68 , the door to that is closed for now...future is still out ther, huh!)..I am encouraged that someone will do Research on us adults someday that will help acknowlege the Lifetime-Care Issues we all live with.
FYI, you are welcome on ALL message Boards to read and post questions there too. On the "Adults and Teens with BPI Message Board" there is alot of information about our lives and "Practical How To's" that we all share.
Gina,you are never going to be bored reading our posts, however, be forwarned we have a wicked sense of humor. The teens have inspired even me to try new things and I am in awe of their accomplishments in Sports!
Oh, also, there are NO DUMB QUESTIONS here in our UBPN Family, so ask away.
Hugs all around,
Carolyn J
LOBPI/68 & Proud of it!
I am also an Adult with a birth LEFT BPI who had no knowlege or even a name for my injuries until I found UBPN at age 65 3 yrs ago. Kath and other adults have changed my life with sharing our experiences growig up. I have also learned sooo much from all parents who share and posted here. Last year was the 1st time anyDr addressed my injuries(other than stating "Birth Defects" on med. records) and what I lived with all my life, when I consulted a BPI Specialist and got alot of questions answered. Just having things confirmed and getting alot of questions answered was sooo healing...it didn't matter that it is too late for surgery for me, (68 , the door to that is closed for now...future is still out ther, huh!)..I am encouraged that someone will do Research on us adults someday that will help acknowlege the Lifetime-Care Issues we all live with.
FYI, you are welcome on ALL message Boards to read and post questions there too. On the "Adults and Teens with BPI Message Board" there is alot of information about our lives and "Practical How To's" that we all share.
Gina,you are never going to be bored reading our posts, however, be forwarned we have a wicked sense of humor. The teens have inspired even me to try new things and I am in awe of their accomplishments in Sports!
Oh, also, there are NO DUMB QUESTIONS here in our UBPN Family, so ask away.
Hugs all around,
Carolyn J
LOBPI/68 & Proud of it!
Carolyn J
Adult LOBPI
Adult LOBPI
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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: Looking for support. My daughter has Erb's Palsy.
Welcome Gina,
I too was diagnosed with Erb's Palsey after a traumatic birth. I am now 31 years old and am living a great life.
I am now studying to become a nurse, but have a PT degree and an education degree. I don't have full active movement of my shoulder, don't have much external rotation and can't get my hand to mouth, but am able to do what anyone else can do. I had one suregry at age 14 (lattissimus dorsi tendon transfer), and lots of PT.
Have fun with your child and encourage her to do what she wants to do. We BPIs are tough, courageous and don't let much get in our way!
Marieke (31, LOBPI)
http://nurse-to-be08.blogspot.com/
I too was diagnosed with Erb's Palsey after a traumatic birth. I am now 31 years old and am living a great life.
I am now studying to become a nurse, but have a PT degree and an education degree. I don't have full active movement of my shoulder, don't have much external rotation and can't get my hand to mouth, but am able to do what anyone else can do. I had one suregry at age 14 (lattissimus dorsi tendon transfer), and lots of PT.
Have fun with your child and encourage her to do what she wants to do. We BPIs are tough, courageous and don't let much get in our way!
Marieke (31, LOBPI)
http://nurse-to-be08.blogspot.com/
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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: Looking for support. My daughter has Erb's Palsy.
Gina
If I were to be truly honest I would have to say that being birth injured changed many things in my life.
I think being birth injured made me develop the more creative side of my brain.
I think bpi children are the most determined and creative bunch of kids I have ever met.
My mother often told me I was so stubborn and just would not give up...
Well, I had to be to learn to do many of life's normal functions...
I am married for 41 years, have three grown children and 5 grandchildren.
I have accomplished most things I set out to do.
Many I would never have attempted except I had to prove to myself I could do anything anyone else could do.
I won't pretend that life has been easy but no one really has an easy life.
Every child faces something that challenges them and I just had a few more.
I think my major life issues with bpi is not having good sound medical advice.
Most of my life doctors did not have good information and pretended that my arm was not injured...
They seemed to ignore the elephant in the room. Of course, now I don't let them.
I also struggled with constant PT and someone always telling me to use my arm... but they were right and did what was right for me.
I feel that being treated as a normal child was a great gift.
I always knew that what was wrong with my arm and how it happened.
I don't remember not knowing exactly how it happened and how wonderful it was that I could move at all.
My mother always told me it was a miracle and put a very positive spin on my injury.
I also feel my Mother taught me that not everyone was good at everything and that helped me to cope with the things I could not do.
She also handled all of the nosy questions others, especially strangers, asked with grace and good manners...
Since she was not upset and angry I guess I learned not to be upset and angry with questions about my arm....
You have a long way to go and medicine has made great strides in the last 5 years so I have great hopes for better care for bpi kids.
I think OT is as important as PT because it will help prevent secondary injuries.
I guess what I am trying to say is I have a good life and more than others who are not injured.
Finding UBPN was very healing for me as it was for Carolyn.
It's good for us to be around others who truly understand our daily frustrations and joys...
Kath adult/robpi
If I were to be truly honest I would have to say that being birth injured changed many things in my life.
I think being birth injured made me develop the more creative side of my brain.
I think bpi children are the most determined and creative bunch of kids I have ever met.
My mother often told me I was so stubborn and just would not give up...
Well, I had to be to learn to do many of life's normal functions...
I am married for 41 years, have three grown children and 5 grandchildren.
I have accomplished most things I set out to do.
Many I would never have attempted except I had to prove to myself I could do anything anyone else could do.
I won't pretend that life has been easy but no one really has an easy life.
Every child faces something that challenges them and I just had a few more.
I think my major life issues with bpi is not having good sound medical advice.
Most of my life doctors did not have good information and pretended that my arm was not injured...
They seemed to ignore the elephant in the room. Of course, now I don't let them.
I also struggled with constant PT and someone always telling me to use my arm... but they were right and did what was right for me.
I feel that being treated as a normal child was a great gift.
I always knew that what was wrong with my arm and how it happened.
I don't remember not knowing exactly how it happened and how wonderful it was that I could move at all.
My mother always told me it was a miracle and put a very positive spin on my injury.
I also feel my Mother taught me that not everyone was good at everything and that helped me to cope with the things I could not do.
She also handled all of the nosy questions others, especially strangers, asked with grace and good manners...
Since she was not upset and angry I guess I learned not to be upset and angry with questions about my arm....
You have a long way to go and medicine has made great strides in the last 5 years so I have great hopes for better care for bpi kids.
I think OT is as important as PT because it will help prevent secondary injuries.
I guess what I am trying to say is I have a good life and more than others who are not injured.
Finding UBPN was very healing for me as it was for Carolyn.
It's good for us to be around others who truly understand our daily frustrations and joys...
Kath adult/robpi
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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JamieMarie'smommie
- Posts: 178
- Joined: Thu Apr 14, 2005 11:21 am
Re: Looking for support. My daughter has Erb's Palsy.
Gina,
I've been trying to add you on myspace but for some reason it wont let me. look me up sometime on there.
http://profile.myspace.com/index.cfm?fu ... d=47881207
Amanda (mom to Jamie 2yrs old ROBPI)
I've been trying to add you on myspace but for some reason it wont let me. look me up sometime on there.
http://profile.myspace.com/index.cfm?fu ... d=47881207
Amanda (mom to Jamie 2yrs old ROBPI)
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SydneyRose
- Posts: 10
- Joined: Thu Mar 15, 2007 6:15 pm
Re: Looking for support. My daughter has Erb's Palsy.
That's great! I just added you!
Your daughter is so cute!!
Thank You!
Your daughter is so cute!!
Thank You!
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JamieMarie'smommie
- Posts: 178
- Joined: Thu Apr 14, 2005 11:21 am
Re: Looking for support. My daughter has Erb's Palsy.
thank you. I saw that you added me.
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SydneyRose
- Posts: 10
- Joined: Thu Mar 15, 2007 6:15 pm
Re: Looking for support. My daughter has Erb's Palsy.
Thank You everybody so much for sharing your experiences and opening up your lives with me. It really does mean alot and helps me to get a grip on myself.
I will keep you all updated on Sydney's progress and appointments.
Wow what a great group of people. Thanks again. It helps to know that since Sydney has progressed since birth that that's a good sign. It also helps to know that many people continue on to have "normal" lives. (What's normal anyway?) Though it may take a little more effort, it's comforting to know that you can have this injury, not fully recover, but still be able to do most if not everything that a person without BPI can do.
I feel so much better this past 24 hours. I can't thank you all enough.
Thanks Again!
Relieved,
GinA!
Please feel free to email me.
Gtrouble68@aol.com
I will keep you all updated on Sydney's progress and appointments.
Wow what a great group of people. Thanks again. It helps to know that since Sydney has progressed since birth that that's a good sign. It also helps to know that many people continue on to have "normal" lives. (What's normal anyway?) Though it may take a little more effort, it's comforting to know that you can have this injury, not fully recover, but still be able to do most if not everything that a person without BPI can do.
I feel so much better this past 24 hours. I can't thank you all enough.
Thanks Again!
Relieved,
GinA!
Please feel free to email me.
Gtrouble68@aol.com
Re: Looking for support. My daughter has Erb's Palsy.
Hi Gina and welcome to the UBPN family. Sorry that you've come to join us through unfortunate circumstances.
My son was born with three significant hematomas, facial brusing and Erb's palsy on his left arm. He is 7 years old now. We experienced some of the same things you mentioned about Sydney Rose (great name by the way).
I noticed that she is getting physical therapy and massage therapy. Are you doing any stretching excercises with her? I believe it helps a great deal to supplement the formal therapy with at home therapy which her therapist should be able to show you. If not, there are resources available on the internet to show you what to do. If you need help finding them, let me know.
Best wishes for a complete recovery for Sydney Rose. Keep us posted.
My son was born with three significant hematomas, facial brusing and Erb's palsy on his left arm. He is 7 years old now. We experienced some of the same things you mentioned about Sydney Rose (great name by the way).
I noticed that she is getting physical therapy and massage therapy. Are you doing any stretching excercises with her? I believe it helps a great deal to supplement the formal therapy with at home therapy which her therapist should be able to show you. If not, there are resources available on the internet to show you what to do. If you need help finding them, let me know.
Best wishes for a complete recovery for Sydney Rose. Keep us posted.
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Olivias mommy
Re: Looking for support. My daughter has Erb's Palsy.
KUDOS to Ben's Dad! We all know how important gentle stretching and ROM (Range of Motion) is with these children- especially infants. Good call pointing that out to new moms!!
Gina- it is great that you have found us! My daughter Olivia will be 3 next month, and has a bilateral (both arms are affected) OBPI. She also had severe bruising on her head and face- she was in the NICU for 6 days battling jaundice caused by the bruising, and her face was VERY swollen. I know how hard it is to look at your precious newborn that is already injured.
Stretching those muscles is SO SO important- you can have your therepist teach you how if you are not already doing this. You need to do it several times daily (I personally made it part of a routine diaper change). ROM and stretching will keep those muscles from getting so tight- and make them easier for her to move.
It is also a wonderful idea for you to visit with a BPI specialist. Early intervention is key.
It is very very promising that Sydney has regained some movement. Congratulations on your new baby!
Veronica
mom of olivia, 3 years, Bi-OBPI
Gina- it is great that you have found us! My daughter Olivia will be 3 next month, and has a bilateral (both arms are affected) OBPI. She also had severe bruising on her head and face- she was in the NICU for 6 days battling jaundice caused by the bruising, and her face was VERY swollen. I know how hard it is to look at your precious newborn that is already injured.
Stretching those muscles is SO SO important- you can have your therepist teach you how if you are not already doing this. You need to do it several times daily (I personally made it part of a routine diaper change). ROM and stretching will keep those muscles from getting so tight- and make them easier for her to move.
It is also a wonderful idea for you to visit with a BPI specialist. Early intervention is key.
It is very very promising that Sydney has regained some movement. Congratulations on your new baby!
Veronica
mom of olivia, 3 years, Bi-OBPI
