Needing direction for my daughter

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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Dea Lasley
Posts:2
Joined:Sun Sep 18, 2011 4:23 pm
Injury Description, Date, extent, surgical intervention etc:Daughter has LOBPI
Needing direction for my daughter

Post by Dea Lasley » Sun Sep 18, 2011 4:33 pm

My daughter is 3 and has LOBPI. She has relatively good up and down movement and extension, although she doesn't extend fully and has no suppination at all. Good grip and can move her wrist up and down a little.
She has therapy four days a week. I want to know more about what to expect in the future.
Will she get suppination? How can I help her more?
What about estem--electric stimulation--does this help? How long will it be necessary.
What type of pain will she be subject too in the future? Will pain increase as she gets older?
I've heard wonderful stories about basketball playing and dancing (which she loves). What other activities are helpful?
What can I do to help her now and in the future? I want her to be happy and active. Please guide me.

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: Needing direction for my daughter

Post by Carolyn J » Mon Sep 19, 2011 12:05 pm

Claudia posted this on another topic thread but I believe it is very helpful.
BTW, WELCOME to our UBPN Family.



by claudia » Sun Sep 18, 2011 3:49 pm

"
We have a resource page on this site.[ Home Page ,click on Link..CJ] You can look up all kind of information about the different docs who do bpi surgery.

I suggest you get at least 3 opinions. Each child is different and there are many different opinions as to how to treat bpi.

.... We have been to many of the surgeons and most of them are very "user friendly" and will respond quickly to emails if you have questions.

Mostly, we see Scott Kozin at Shriner's Philadelphia and Andrew Price in NYC. "

Ask a lot of questions.

claudia
Carolyn J
LOBPI/73+ ;) 8-)

emilyalberger
Posts:51
Joined:Tue Mar 29, 2011 5:53 am
Injury Description, Date, extent, surgical intervention etc:left arm bpi since birth,can only bend my elbow mostly ne feeling n when i get it its not the right sensation

Re: Needing direction for my daughter

Post by emilyalberger » Wed Sep 21, 2011 5:23 pm

get her on dissability asap...trust me she will need it in the future

User avatar
hope16_05
Posts:1670
Joined:Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc:28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location:Minnesota
Contact:

Re: Needing direction for my daughter

Post by hope16_05 » Sun Sep 25, 2011 10:04 pm

Your daughter sounds like she is in excellent hands! I would guess if you can maintain what she has and be willing to talk openly when she has questions that she will be in excellent shape as an adult... Let her try any sports that you would let any other child try regardless of her injury...She will know her own limitations, you won't have to worry about that at all. this injury does not have to be disabling at all. it can be very disabling if you let that happen. I choose to not let my injury get me down and now I am happily married mother of three and working part time right now as an occupational therapist. Sure some things are more difficult for me, I will find a way to complete any task I set my mind to! Continue to support that beautiful baby and she will grow up with a healthy mind set and she will accomplish any task she set her mind to!
Hugs,
Amy ROBPI age 24 from MN
Amy 28 years old ROBPI from MN

Dea Lasley
Posts:2
Joined:Sun Sep 18, 2011 4:23 pm
Injury Description, Date, extent, surgical intervention etc:Daughter has LOBPI

Re: Needing direction for my daughter

Post by Dea Lasley » Mon Sep 26, 2011 5:54 am

She has been holding her arm and saying it has "tickle pain" tingling--like it is asleep and waking up, which we believe is great because it means her nerves are working.
But I'm worried about her being in pain, and worse, her being in pain and me now know about it or be able to help stop it.
Did you experience pain growing up?

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: Needing direction for my daughter

Post by Carolyn J » Mon Sep 26, 2011 8:13 pm

I have experienced both "tingling" And Pain intermittently all my life and still do.
Carolyn J
LOBPI/73+

emilyalberger
Posts:51
Joined:Tue Mar 29, 2011 5:53 am
Injury Description, Date, extent, surgical intervention etc:left arm bpi since birth,can only bend my elbow mostly ne feeling n when i get it its not the right sensation

Re: Needing direction for my daughter

Post by emilyalberger » Tue Sep 27, 2011 4:01 pm

me too, thats why im so gung ho about people getting there children on dissability if they have erbs palsy.if you wait too long they wont put it through and she'll get denied like i did so many times...and it doesnt mean they are "dissabled" it means when they get older they may need the extra money to go to a special therapy like water exercises at the YMCA or herbal or medical stuff for the pain or when there in middle school n they feel down or get picked on you can use that money to take her out to a fancy resturant for lunch and say "ha look what you can do n they cant".i hope all goes well for you guys

User avatar
hope16_05
Posts:1670
Joined:Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc:28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location:Minnesota
Contact:

Re: Needing direction for my daughter

Post by hope16_05 » Thu Sep 29, 2011 3:50 pm

I have had pain but again it's another thing I choose not to let it get me down. I did that once and that was the most depressing year of my teen/adult years. I still have pain on occasion like today my back is terribly out of place and every movement is painful but life must go on and it's so much easier to go on when I have a smile and positive attitude. I take vitamin B12 daily and that helps to keep the pain to a minimum. This was recommended to me when I was a young teen by some very wise adult BPI friends however, I was too stubborn to listen to their advice...big mistake! If I remember t take my B12 daily I rarely have shooting pains anymore. Motly only with big weather changes.

As long as you keep open conversation with your kiddo, she will grow up healthy with a great mind set and she will b able to tell you if she ever has pain.
Hope that helps,
Amy
Amy 28 years old ROBPI from MN

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: Needing direction for my daughter

Post by Kath » Tue Oct 04, 2011 4:13 pm

Amy
I glad to here you finally listened. I still get weird looks from drs. when I say I get B12 shots... But I don't care it has worked for me for years. I can tell when 8 weeks have passed... I start with the shooting pain thing and tingles...

Your advice was great. OBPI need to have a positive attitude towards themselves. Most people thing we can't do certain things...Well as the Mother of three and grandmother of 5... I'm here to say... and OBPI child/teen/adult can do anything they put there mind too. One of the most important lessons for us to learn is that we should not limit ourselves and we are so much more than an injured arm.

It seems like yesterday when you showed up her and now your a mommy...LOL...
love & hugs Kath :D
Kath robpi/adult

Kathleen Mallozzi

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