My son Logan was born with Erb's Palsy in his left arm caused by BPI trauma at birth. His hand/wrist movements are fairly strong and he has some movement with his tricep extension. He is currently 7 weeks old but we have yet to see any movement from his bicep or his shoulder.
He is in PT 2-3 times a week and OT at least once per week. His mother and I try to perform the ROM exercises as often as possible.
My question is to parents of children who have either fully recovered or partially recovered. At what point did your child show the most progress and how long did the inactivity in the arm last?
My wife and I are hoping for the best and are trying to do everything possible to ensure he's given the best chance for recovery. He's seen an orthopedic specialist for evaluation and is due for a recheck in 4 weeks. It was stated if there was no progress seen in that time, we would be referred to a neurosurgeon who specializes in BPI cases for further evaluation for possible surgery.
Are we overreacting or are we going along the right path? If he is a candidate for surgery, we want to make sure we don't miss any window of opportunity.
Any information would be appreciated.
For those recovered, when was progress most noticeable?
Re: For those recovered, when was progress most noticeable?
Dear Logan's Dad:
I'm glad you were able to find us so early, though I am sorry you had to find us at all.
Doing the ot and pt are great. I know people say ROM at every diaper change, but don't sweat it if you forget. Remember to play with and enjoy Logan.
As for a window of opportnity, well.. with hand function, the really early 3-4 month surgery is out. So you have time to wait. However, i would go on our medical resources page and contact some of the doctors there. The docs have filled out questionaires so you can learn a little about them. They are very user friendly--they respond to email and to phone calls. The world of bpi treatment is changing quickly and these doctors are particularly interested in those changes.
Keep hoping for the best. I never thought my daughter would move her arm AT ALL and there she is playing tennis, swimming, playing basketball, riding a bike.
good luck,
claudia
claudia@ubpn.org
ps. you can email me if you want to know which docs we have seen
I'm glad you were able to find us so early, though I am sorry you had to find us at all.
Doing the ot and pt are great. I know people say ROM at every diaper change, but don't sweat it if you forget. Remember to play with and enjoy Logan.
As for a window of opportnity, well.. with hand function, the really early 3-4 month surgery is out. So you have time to wait. However, i would go on our medical resources page and contact some of the doctors there. The docs have filled out questionaires so you can learn a little about them. They are very user friendly--they respond to email and to phone calls. The world of bpi treatment is changing quickly and these doctors are particularly interested in those changes.
Keep hoping for the best. I never thought my daughter would move her arm AT ALL and there she is playing tennis, swimming, playing basketball, riding a bike.
good luck,
claudia
claudia@ubpn.org
ps. you can email me if you want to know which docs we have seen
Re: For those recovered, when was progress most noticeable?
My son is now almost 2 years old. I wouldn't consider him fully recovered, but our neurologist has told us that he's at about 90-95% of what his other arm does. To me, this is pretty good. At birth he could move his fingers only. At about 1 week or so he started moving his arm up and down a little. It was very small movements. He started bending his elbow at about 6 weeks to 2 months or so. He's gradually moved it more and more over the first few months. Now he can do anything with it that the other arm does, just does it a little differently. Also his injured arm isn't as strong so some things like bearing weight he doesn't do as long on the injured arm as the other. He did crawl normally and pulled up using both arms. So I guess to answer your question we started noticing movement within a week or so after birth.
Re: For those recovered, when was progress most noticeable?
If you would post your email, I'd be happy to email you with my child's progression.
-
Tanya in NY
- Posts: 935
- Joined: Mon May 03, 2004 10:51 am
- Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
- Location: NY State
- Contact:
Re: For those recovered, when was progress most noticeable?
It sounds like you've already started down the right path. Finding out information is a great way to help your son. I'm glad that you found us!
Each child's progress can be so different. It can become a viscious circle hearing others stories or it can be comforting to you to hear their stories of their child's progress. You can't help but compare your own child's progress or lack thereof to their story. Be careful of falling into that cycle. What your child can't do today, may change tomorrow, next week, next month, or who knows.
The way BPI is being treated and new techniques are being founded everyday it seems. It's an exciting time. Get to that specialist. I always stress the importance of seeing a BPI specialist to parents in this manner...if you had a heart attack, you'd follow up with a cardiologist for your heart, so you should bring your child to see a specialist with knowledge of BPI who is following research and taking care of children everyday so they are up to date. It makes sense to me.
You asked for how progress was, so here is Amber's story, albeit abreviated. Injured at birth with finger and wrist movement only. No other movement noted until 4 months and then it was a flicker of her shoulder only. Slow progression of muscle return over many months. OT, PT, and aquatic therapy along with ROM exercises were done. At age 25 months, she had the anterior capsule release because she was subluxed in her shoulder. Just had her 3 year follow-up MRI that showed her shoulder looks great. She has amazing function at this time. She has some limitations and compensates so well that people unfamiliar with BPI do not know she has an injury. It will affect her for the rest of her life and cause issues as she ages. She wears TheraTogs to try to decrease her compensation, and it is helping. She does everything that she wants to try to do, and what she can't do, she just asks for help with. She rides a bike, takes dance lessons, plays on the playground, etc. She knows no different and couldn't care less at this point. She has friends and is happy. She is 5 years old.
I hope this helps.
Tanya in NY
Amber's Mom, ROBPI, 5 years old
Each child's progress can be so different. It can become a viscious circle hearing others stories or it can be comforting to you to hear their stories of their child's progress. You can't help but compare your own child's progress or lack thereof to their story. Be careful of falling into that cycle. What your child can't do today, may change tomorrow, next week, next month, or who knows.
The way BPI is being treated and new techniques are being founded everyday it seems. It's an exciting time. Get to that specialist. I always stress the importance of seeing a BPI specialist to parents in this manner...if you had a heart attack, you'd follow up with a cardiologist for your heart, so you should bring your child to see a specialist with knowledge of BPI who is following research and taking care of children everyday so they are up to date. It makes sense to me.
You asked for how progress was, so here is Amber's story, albeit abreviated. Injured at birth with finger and wrist movement only. No other movement noted until 4 months and then it was a flicker of her shoulder only. Slow progression of muscle return over many months. OT, PT, and aquatic therapy along with ROM exercises were done. At age 25 months, she had the anterior capsule release because she was subluxed in her shoulder. Just had her 3 year follow-up MRI that showed her shoulder looks great. She has amazing function at this time. She has some limitations and compensates so well that people unfamiliar with BPI do not know she has an injury. It will affect her for the rest of her life and cause issues as she ages. She wears TheraTogs to try to decrease her compensation, and it is helping. She does everything that she wants to try to do, and what she can't do, she just asks for help with. She rides a bike, takes dance lessons, plays on the playground, etc. She knows no different and couldn't care less at this point. She has friends and is happy. She is 5 years old.
I hope this helps.
Tanya in NY
Amber's Mom, ROBPI, 5 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old
Re: For those recovered, when was progress most noticeable?
Logan's Dad;
Claudia's advise is exactly right. Looking at experienced BPI physicians/surgeons now is very worthwhile so you can move forward with minimal delay if appropriate.
John P.
ROBPI for 68 years
Claudia's advise is exactly right. Looking at experienced BPI physicians/surgeons now is very worthwhile so you can move forward with minimal delay if appropriate.
John P.
ROBPI for 68 years
Re: For those recovered, when was progress most noticeable?
guest03, my email is available through my profile. I would love to hear of your child's progress.
Re: For those recovered, when was progress most noticeable?
Logan's Dad,
I haven't posted in a very long time, your post caught my eye. I remember walking in your shoes 5 1/2 years ago. My son Bradley has had 4 surgeries. My advice when he was a wee one was... no hand to mouth at 3 months...primary surgery is warranted. Please see a specialist. I am very pleased with the progress Bradley has made over the past five years. It's been a rough road, but a path and learning experience I wouldn't change for the world. My son has made me a better person. Enjoy your precious little one, don't stress over ROM. In the long run the injury will be what it will be, no matter how may surgeries. You're on top of it, go with your gut, everything will be ok, I promise:-)
I haven't posted in a very long time, your post caught my eye. I remember walking in your shoes 5 1/2 years ago. My son Bradley has had 4 surgeries. My advice when he was a wee one was... no hand to mouth at 3 months...primary surgery is warranted. Please see a specialist. I am very pleased with the progress Bradley has made over the past five years. It's been a rough road, but a path and learning experience I wouldn't change for the world. My son has made me a better person. Enjoy your precious little one, don't stress over ROM. In the long run the injury will be what it will be, no matter how may surgeries. You're on top of it, go with your gut, everything will be ok, I promise:-)
Re: For those recovered, when was progress most noticeable?
Like Allison-S, I, too, have not posted in a very long time. However, your posting also caught my notice. My granddaughter was born 5 1/2 years ago with a lobpi and had shown no movement with her arm when she had surgery at the age of 5 mo. in Texas. She showed some slight movement about 2 mos. following that surgery and she had the mod quad surgery when she was a year old. She has had no surgeries since that time but a lot of physical therapy up to the age of 3. After that, she was involved in swimming lessons, gymnastics, and dance to increase her opportunities for arm movement. Now, at the age of 5 1/2, she has done very well, can ride a bike, takes piano lessons, has taken tennis lessons, and although her left arm is slightly shorter than her right, no one who doesn't already know about her injury ever notices any difference. She will probably have issues with her arm throughout her life; at this time it is difficult for her to button her jeans because her arm just doesn't bend well right at her waist. But we are pleased with the tremendous progress she has made since her injury at birth.
Re: For those recovered, when was progress most noticeable?
Hi Robert,
It sounds like you are on the right path to me. I would be interested in hearing who you are seeing (we are also in Southern California and saw a few different teams here). With good hand and triceps extension, your son is on the right track towards making a decent recovery with this injury. It sounds like he is doing better than Joshua did at the same age. Joshua started getting shoulder movement in around 3 months old and had hand-to-mouth by 5 months. I would say the most improvement that we saw was during those two months.
The absolute worst thing about this injury, as you are discovering right now, is that the only way to tell how "bad" it is is by when the child recovers various functions in his/her arm. It's a really good sign that your son has good hand and wrist and triceps are coming in. That suggests that the lower roots were relatively undamaged which bodes well for everything else. However, if he does not have strong biceps by now, you are most certainly looking at some degree of permanent damage in at least some of the upper roots. Basically this is because if only the nerve axons themselves have to regrow, recovery would begin within the first 1-2 months. If it takes more than 1-2 months, there is more going on, such as the sheath of the nerves are torn.
My son got hand-to-mouth with some compensation at 4.5 months of age and thus was not a candidate for primary surgery. We got a second opinion from Dr. Waters in Boston at 5 months old just to be sure. He did end up needing shoulder surgery but that is very very common if the child has some permanent nerve injury. Anyway, about 11 weeks for a recheck with a neurosurgeon who could perform nerve reconstruction sounds right to me. With good hand function, I think most docs would give your son until at least 5 or 6 months of age for primary surgery.
Good luck and try to videotape and take lots of pictures. These first few weeks go by so fast especially when you are watching and waiting for that arm to move. One day, when this agonizing time has passed, you are going to feel sad that "the arm" was such a big presence in your life. It's then especially nice to have tapes and pictures to help remember the rest
Kate
It sounds like you are on the right path to me. I would be interested in hearing who you are seeing (we are also in Southern California and saw a few different teams here). With good hand and triceps extension, your son is on the right track towards making a decent recovery with this injury. It sounds like he is doing better than Joshua did at the same age. Joshua started getting shoulder movement in around 3 months old and had hand-to-mouth by 5 months. I would say the most improvement that we saw was during those two months.
The absolute worst thing about this injury, as you are discovering right now, is that the only way to tell how "bad" it is is by when the child recovers various functions in his/her arm. It's a really good sign that your son has good hand and wrist and triceps are coming in. That suggests that the lower roots were relatively undamaged which bodes well for everything else. However, if he does not have strong biceps by now, you are most certainly looking at some degree of permanent damage in at least some of the upper roots. Basically this is because if only the nerve axons themselves have to regrow, recovery would begin within the first 1-2 months. If it takes more than 1-2 months, there is more going on, such as the sheath of the nerves are torn.
My son got hand-to-mouth with some compensation at 4.5 months of age and thus was not a candidate for primary surgery. We got a second opinion from Dr. Waters in Boston at 5 months old just to be sure. He did end up needing shoulder surgery but that is very very common if the child has some permanent nerve injury. Anyway, about 11 weeks for a recheck with a neurosurgeon who could perform nerve reconstruction sounds right to me. With good hand function, I think most docs would give your son until at least 5 or 6 months of age for primary surgery.
Good luck and try to videotape and take lots of pictures. These first few weeks go by so fast especially when you are watching and waiting for that arm to move. One day, when this agonizing time has passed, you are going to feel sad that "the arm" was such a big presence in your life. It's then especially nice to have tapes and pictures to help remember the rest
Kate