Hello all, I am not really sure where to be posting, but this seem the right place to start. My wife and I just delivered a beautiful baby girl last week and as a result of sholder dystocia, we believe she now has Erb Palsy. The doctors have not told us for sure, they just keep saying that she has sholder dystocia. She has no use of her left arm, although she can use her hand and fingers. Sge us our fisrt child and we really are Not sure how to handle all of this.
The doctors have not really given us much to go on, so naturally, we are trying to figure out all we can on our own. We were wondering, how long should we wait till going to therapy, see a nurologist, and what to expect.
Also, is there anyone people would reccomend in the Dallas/Fort Worth area, or in Texas for that matter. Thank you all in advance for your help, and I look forward to chatting with you all.
Thanks,
Dustan Hillary and Caroline
New Members with questions
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hillaryanddustan
- Posts: 1
- Joined: Mon Nov 08, 2010 8:31 pm
- Injury Description, Date, extent, surgical intervention etc: Our daughter had sholder dystocia at birth, by our own research, we believe that she has Erb palsy. She was born Nov 1 of 2010. She can move her hands and fingers, but she can not mover her arm.
Re: New Members with questions
Hi Dustan, Hillary and Caroline,
I'm so sorry you had to find us under these circumstances, but you've come to a great place for resources. The doctors really won't tell you much because they see so few of these injuries that linger after you are released from the hospital. The majority of BPIs are so short-lived the parents may not even know it happened. A trip to a specialist or even an experienced physical therapist would help calm your fears and help you understand the injury better. I would try to get a referral from your pediatrician as soon as possible. Please don't rely on your regular pediatrician, you just cannot expect them to be very knowledgeable about this injury, and their "input" can be very misleading or misinformed.
That is my general advice for all new parents, although from what you describe, it sounds hopeful that your child will have a good recovery. Basically, aside from very severe injuries where you can see the impact on the spinal canal in an MRI, the only way to know how severe a BPI injury is, is by observing how fast it recovers. Your child has good hand and finger function very soon after injury, which is a very good sign that the injury is not severe, with the lower roots only temporarily impacted - a "stinger". That bodes well for the upper roots as well, because the amount of traction experienced by the lower roots is typically proportional to what the upper roots experienced (the upper roots experience more stretch but are more able to withstand the stretch, typically, than the lower roots).
All you can do now, and all that a specialist would do now, is watch and wait for the rest of her arm function to return. By "no use" do you mean that she cannot raise her arm or cannot move it at all? Is her arm rotated inward (indicating some upper root recovery) or still completely limp except for hand and fingers. Can she move her wrist at all? How soon did her hand/fingers regain function? These are the things that a specialist would look for in trying to determine how her recovery is progressing. But as it sounds right now, good hand/finger function that soon after injury is a very good sign.
Kate
I'm so sorry you had to find us under these circumstances, but you've come to a great place for resources. The doctors really won't tell you much because they see so few of these injuries that linger after you are released from the hospital. The majority of BPIs are so short-lived the parents may not even know it happened. A trip to a specialist or even an experienced physical therapist would help calm your fears and help you understand the injury better. I would try to get a referral from your pediatrician as soon as possible. Please don't rely on your regular pediatrician, you just cannot expect them to be very knowledgeable about this injury, and their "input" can be very misleading or misinformed.
That is my general advice for all new parents, although from what you describe, it sounds hopeful that your child will have a good recovery. Basically, aside from very severe injuries where you can see the impact on the spinal canal in an MRI, the only way to know how severe a BPI injury is, is by observing how fast it recovers. Your child has good hand and finger function very soon after injury, which is a very good sign that the injury is not severe, with the lower roots only temporarily impacted - a "stinger". That bodes well for the upper roots as well, because the amount of traction experienced by the lower roots is typically proportional to what the upper roots experienced (the upper roots experience more stretch but are more able to withstand the stretch, typically, than the lower roots).
All you can do now, and all that a specialist would do now, is watch and wait for the rest of her arm function to return. By "no use" do you mean that she cannot raise her arm or cannot move it at all? Is her arm rotated inward (indicating some upper root recovery) or still completely limp except for hand and fingers. Can she move her wrist at all? How soon did her hand/fingers regain function? These are the things that a specialist would look for in trying to determine how her recovery is progressing. But as it sounds right now, good hand/finger function that soon after injury is a very good sign.
Kate
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gawilliams
- Posts: 45
- Joined: Sun Oct 31, 2010 12:47 am
- Injury Description, Date, extent, surgical intervention etc: Daughter born 8/16/10 has OBPI in the right arm....First surgery(nerve graft) done at 5 months(performed by Dr. Kozin).... four avulsions, one rupture (at the spine)..... As of 4/9/11 still no movement in arm, wrist or hand. As June 2013, bicep, elbow, shoulder function active, flexing with gravity, still no wrist or hand/finger function.
Re: New Members with questions
Hi,
I am new here as well. My daughter born on 8/16/10 was born with shoulder dystocia. She is now 3 mos. and still has no movement in her arm, wrist, hand, or fingers. She has movement in her shoulder but its hard to see it i guess due to the dead weight of her arm. My pediatrician was very determined to get her any and all the help she needs. After she was released from NICU at 2 weeks, she started therapy two weeks after that. Her pediatrician made a referral for OT and with that she began therapy at 4 weeks of age. She goes 3x a week. She has seen an Orthopedic three times since she has been born and he wanted to wait and see how she recovers. Now that she is three months, and still no hand movment, I am really concerned. I expressed those feelings to the Ortho., but he acts as if there is nothing that can be done for her. I took matters into my own hands, i found this great site (which I thank God for leading me here) and read a lot of great reviews on Dr. Scott Kozin in Philadelphia at the Shriners Hospital. I had my daughter's pediatrician send the referral paper work and I called and made an appointment. She is scheduled to go on 12/9. So I know what you are going through is heartbreaking. This is our second child, and this was just appauling. We had never even heard of this type of injury. Its hard to get through each day not knowing if she will ever be able to use her arm/hand the way she is suppose to. I wont lie, there wont be a day that goes by that you wont think about it. But, the best advise that I can give, is first have faith and pray but also research. If it wasnt for me researching, I would be going along with the Orthopedic and just playing the "wait and see" game. If you want to talk or just compare progresses, I would be happy to. It helps me out a little when I talk with other parents and compare stories and just ask questions. Good Luck, and trust me you have come to an awesome website.
I am new here as well. My daughter born on 8/16/10 was born with shoulder dystocia. She is now 3 mos. and still has no movement in her arm, wrist, hand, or fingers. She has movement in her shoulder but its hard to see it i guess due to the dead weight of her arm. My pediatrician was very determined to get her any and all the help she needs. After she was released from NICU at 2 weeks, she started therapy two weeks after that. Her pediatrician made a referral for OT and with that she began therapy at 4 weeks of age. She goes 3x a week. She has seen an Orthopedic three times since she has been born and he wanted to wait and see how she recovers. Now that she is three months, and still no hand movment, I am really concerned. I expressed those feelings to the Ortho., but he acts as if there is nothing that can be done for her. I took matters into my own hands, i found this great site (which I thank God for leading me here) and read a lot of great reviews on Dr. Scott Kozin in Philadelphia at the Shriners Hospital. I had my daughter's pediatrician send the referral paper work and I called and made an appointment. She is scheduled to go on 12/9. So I know what you are going through is heartbreaking. This is our second child, and this was just appauling. We had never even heard of this type of injury. Its hard to get through each day not knowing if she will ever be able to use her arm/hand the way she is suppose to. I wont lie, there wont be a day that goes by that you wont think about it. But, the best advise that I can give, is first have faith and pray but also research. If it wasnt for me researching, I would be going along with the Orthopedic and just playing the "wait and see" game. If you want to talk or just compare progresses, I would be happy to. It helps me out a little when I talk with other parents and compare stories and just ask questions. Good Luck, and trust me you have come to an awesome website.
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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: New Members with questions
i could not imagine watching a baby going through this. i hope any one with a baby with this type of injury finds the right treatment and the courage to to stay strong and dont forget to take care of YOURSELF first. taking care of yourself is a major part of taking care of any one else. whether it be a baby or an injured or ill adult. i hope the best for both of you
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trp314
- Posts: 12
- Joined: Thu Dec 02, 2010 6:44 pm
- Injury Description, Date, extent, surgical intervention etc: Kelsey was born on August 29 2008 and has a right BPI. We have gone back and forth from NY to see Dr Kozin in PA. He is AMAZING! Kelsey got a tendon transfer and shoulder release surgery on October 26th 2010 and has just recently gotten her cast off. She is now externally rotating and supinating....shes NEVER done that before!!!
- Contact:
Re: New Members with questions
When I gave birth to my daughter the doctors did not tell us much either. They said her arm should have full use by 3 months. I contacted a physical therapist right away and that is where I started. They should have Early Intervention services everywhere that insurance covers. I then did some research online and found Dr. Kozin in Philadelphia so I started taking her there when she was a few months old. He is AMAZING! She just recently had surgery and she is 2 years old. Her arm works GREAT now. When she was born she also only had hand and finger movement, when she was 3 months she started lifting it and then gradually using it from there but she wasn't able to externally rotate or supinate which she needs all of that. Congrats on your beautiful baby!!! PLEASE contact Shriners Hospital in Philadelphia because Dr Kozin is the best doctor to go to. I couldn't have asked for a better Dr or a better outcome after surgery!