Hi Alicia,
Reading your post took me back to last year... It seems like there are all these decisions to make and of course you want to make the right one for your child...as the others recomend- reasearch & study up on BPIs.
My son was born in May of 2003- he began therapy at five months and it has worked wonders. He's come so far on his own his therapist still sees continuous improvement each week...and I've talked to others who have been happy with the surgery decision.
The best thing to remember is that there are a lot of other BPI injuries out there and there are new medical developments each day. The day you first see Mackenzie lift both arms to reach for you, your heart will soar because it is so amazing how far she has come...I know she will have a wonderful life because she has a mother that cares so deeply for her & will cheer her on!
-CarrieF
New from NJ
Re: New from NJ
Hi Alicia and welcome to the boards. I'm Cindy mom to Melanie (5 years old) and Matthew (almost 3.5 years old) both are right bpi. Melanie recovered at about 9 weeks, Matthew has a severe injury. His recovery after his last surgery has been amazing. We never thought he would gain such a high level of function.
It's very common to feel lost when you get started through this journey, but it does get better. If you have any questions about anything just ask. Before you know it you'll be an expert.
Melanie did not need formal therapy, however Matthew needed therapy, surgery and we have him involved in alternatives as well. Finding good doctors to be on your team makes things a little easier. We see a neurologist out of Children's Hospital of Philadelphia. Matthew's surgeon is out of Shriner's in Philadelphia.
I started a web page for my kids, you can take a look at www.franklinfamilybpi.com
Take one day at a time.
Cindy
It's very common to feel lost when you get started through this journey, but it does get better. If you have any questions about anything just ask. Before you know it you'll be an expert.
Melanie did not need formal therapy, however Matthew needed therapy, surgery and we have him involved in alternatives as well. Finding good doctors to be on your team makes things a little easier. We see a neurologist out of Children's Hospital of Philadelphia. Matthew's surgeon is out of Shriner's in Philadelphia.
I started a web page for my kids, you can take a look at www.franklinfamilybpi.com
Take one day at a time.
Cindy
Re: New from NJ
I wanted to continue what I wrote above. Based on our experience, I urge you to make sure your child is being seen by a doctor who is aware of all the surgical procedures available for brachial plexus injury as well as knowing what the natural history (non-surgical) healing rates and progressions are.
We finally discovered, when our child was 2 months old, that the specialist that we had been seeing didn't "believe in" nerve reconstruction (or "primary" surgery) and wasn't even aware that it was performed anywhere other than by TCH in Houston. We dropped him like a hot potato, but I was so scared that we had missed critical points in our child's recovery. It turned out that wasn't the case, but it was a horrible time. Our child did end up being in the category of "mild-moderate" injury - meaning he won't make a full recovery but he also would not likely benefit from surgical reconstruction of the nerves. But I NEVER would have been comfortable with that recommendation if it hadn't come from a surgeon who was willing to recommend surgery where appropriate. Likewise, though, I wouldn't be comfortable if a surgeon who only treated surgical cases if he also didn't have a good handle on natural recovery rates and probabilities. It's a delicate balance, and different doctors have different opinions of the relative risks and rewards involved.
How you choose your doctor is a personal decision, and it may be the easiest or the most difficult decision you will have to make. You will get a lot of different perspectives here on this board. Some people go by personal recommendations and references in order to make this decision, some people want to see research, publications and participation in national conferences. Anecdotal evidence doesn't always tell the whole story, but neither does published medical research. It is up to you what approach makes you feel most comfortable.
I, personally, am more comfortable with doctors who communicate with their peers, through publication and participation in the various national and internation gatherings on the subject. I want my doctor to have the benefit of the community of knowledge, not just his own experience. Of course, I also want a doctor who has personal experience in performing the surgeries we were considering. Based on this, the three most important questions I had when I was deciding on a doctor for my child were
1) How do you stay current in the field of treating brachial plexus injuries
It is important to me that my doctor is in regular contact with colleagues working in the field, that they participate in conferences and symposiums and know what their fellow doctors are finding out. This field is highly dynamic, stuff that doctors use to think was true is turning out not to be, surgeries that weren't promising before (such as nerve surgery) are showing more promise as techniques improve, and new approaches are constantly being developed. Knowing if and how my doctor stays current gives me confidence in him.
2) Who would you recommend for a second opinion?
The answers to this helped me evaluate my doctor's personality, as well as what "camp" they are in - the person we see regularily isn't a "big name" but by discussing who he knows, respects and tends to trust information from, we were able to get a better idea of his approach to the injury and his relative beliefs in natural recovery vs. surgical intervention. From his willingness to recommend someone else for a second opinion, I knew that he was comfortable with my approach to this injury (as well as him knowing that someone else might be looking over his shoulder!!)
3) Last, but definitely not least, I wanted to know how many procedures my doctor had done. I know that all doctors have to learn somewhere, but I'm very biased in this... I don't want them learning on my child!! I didn't go with the doctor who does the most procedures, but I also wasn't very comfortable with the doctor who had done 10!
Our child is seen primarily by a local team here in Los Angeles. I do think the value of geographical closeness is typically underestimated on these boards. If you must travel to see a good doctor, by all means do it, but I would also try to find someone reasonably knowledgeable and up-to-date to follow up with regularily. Whether or not your child ends up being a candidate for primary surgery, any child who doesn't fully recover by around 2-3 months old faces possible shoulder problems down the line which can limit their function and cause problems later. If discovered early enough, though, problems can hopefully be avoided, either with intensified physical therapy or sometimes surgical intervention. In addition, you'll want to make sure that the doctor you see regularily is well-informed on all the latest developments in procedures and complications, so your child can benefit from advances in this changing field.
In addition to our local team, we also saw Dr. Waters in Boston, to make sure we were comfortable with the "no primary" decision for our child. We will probably go back at any new "turning points" in our child's recovery. I don't know that it is necessary to get a second opinion, but it made us feel more comfortable that we were doing all we could for our child. If you can get to see Dr. Waters, I highly recommend him. He is extremely knowledgeable in this field, and well-informed about what most other doctors are doing and discovering. He is currently involved in heading a multi-center, international study to evaluate questions of primary surgery timing, natural recovery rates, and secondary surgery indications and timing. He's also very warm and easy to ask questions (although in our case I'm sure it helped that we traveled a very long distance to see him and he knew it!)
On these forums, you will hear the saying "every child is different" quite frequently. It's a reminder not to get too caught up in how your child compares to other children, which can be traumatic and misleading, as so much differs from child to child, and similarities can be very misleading. But even despite these differences, some evaluation measures ARE provingto be fairly good at predicting final recovery without primary surgery. In any case, every doctor depends on comparison to other children's results to make recommendations for your child.
Doctors HAVE been working on evaluation techniques to predict natural recovery, in order to standardize indications for primary surgery and to enable comparison with results from other centers. Dr. Waters and the multi-center trial he is leading use a number of measures to evaluate the potential recovery of these kids, and the relative benefit expected from primary surgery. They have "validated" one of these measurement techniques as consistent regardless of the person doing the evaluation, and it is fairly easy to apply. Dr. Waters walked us through the evaluation of our child when we visited, and if you are interested, I can point you to some of the papers and/or help you try the evaluation on your child, keeping in mind that this would be IN NO WAY a replacement for being seen by an actual specialist.
Kate
We finally discovered, when our child was 2 months old, that the specialist that we had been seeing didn't "believe in" nerve reconstruction (or "primary" surgery) and wasn't even aware that it was performed anywhere other than by TCH in Houston. We dropped him like a hot potato, but I was so scared that we had missed critical points in our child's recovery. It turned out that wasn't the case, but it was a horrible time. Our child did end up being in the category of "mild-moderate" injury - meaning he won't make a full recovery but he also would not likely benefit from surgical reconstruction of the nerves. But I NEVER would have been comfortable with that recommendation if it hadn't come from a surgeon who was willing to recommend surgery where appropriate. Likewise, though, I wouldn't be comfortable if a surgeon who only treated surgical cases if he also didn't have a good handle on natural recovery rates and probabilities. It's a delicate balance, and different doctors have different opinions of the relative risks and rewards involved.
How you choose your doctor is a personal decision, and it may be the easiest or the most difficult decision you will have to make. You will get a lot of different perspectives here on this board. Some people go by personal recommendations and references in order to make this decision, some people want to see research, publications and participation in national conferences. Anecdotal evidence doesn't always tell the whole story, but neither does published medical research. It is up to you what approach makes you feel most comfortable.
I, personally, am more comfortable with doctors who communicate with their peers, through publication and participation in the various national and internation gatherings on the subject. I want my doctor to have the benefit of the community of knowledge, not just his own experience. Of course, I also want a doctor who has personal experience in performing the surgeries we were considering. Based on this, the three most important questions I had when I was deciding on a doctor for my child were
1) How do you stay current in the field of treating brachial plexus injuries
It is important to me that my doctor is in regular contact with colleagues working in the field, that they participate in conferences and symposiums and know what their fellow doctors are finding out. This field is highly dynamic, stuff that doctors use to think was true is turning out not to be, surgeries that weren't promising before (such as nerve surgery) are showing more promise as techniques improve, and new approaches are constantly being developed. Knowing if and how my doctor stays current gives me confidence in him.
2) Who would you recommend for a second opinion?
The answers to this helped me evaluate my doctor's personality, as well as what "camp" they are in - the person we see regularily isn't a "big name" but by discussing who he knows, respects and tends to trust information from, we were able to get a better idea of his approach to the injury and his relative beliefs in natural recovery vs. surgical intervention. From his willingness to recommend someone else for a second opinion, I knew that he was comfortable with my approach to this injury (as well as him knowing that someone else might be looking over his shoulder!!)
3) Last, but definitely not least, I wanted to know how many procedures my doctor had done. I know that all doctors have to learn somewhere, but I'm very biased in this... I don't want them learning on my child!! I didn't go with the doctor who does the most procedures, but I also wasn't very comfortable with the doctor who had done 10!
Our child is seen primarily by a local team here in Los Angeles. I do think the value of geographical closeness is typically underestimated on these boards. If you must travel to see a good doctor, by all means do it, but I would also try to find someone reasonably knowledgeable and up-to-date to follow up with regularily. Whether or not your child ends up being a candidate for primary surgery, any child who doesn't fully recover by around 2-3 months old faces possible shoulder problems down the line which can limit their function and cause problems later. If discovered early enough, though, problems can hopefully be avoided, either with intensified physical therapy or sometimes surgical intervention. In addition, you'll want to make sure that the doctor you see regularily is well-informed on all the latest developments in procedures and complications, so your child can benefit from advances in this changing field.
In addition to our local team, we also saw Dr. Waters in Boston, to make sure we were comfortable with the "no primary" decision for our child. We will probably go back at any new "turning points" in our child's recovery. I don't know that it is necessary to get a second opinion, but it made us feel more comfortable that we were doing all we could for our child. If you can get to see Dr. Waters, I highly recommend him. He is extremely knowledgeable in this field, and well-informed about what most other doctors are doing and discovering. He is currently involved in heading a multi-center, international study to evaluate questions of primary surgery timing, natural recovery rates, and secondary surgery indications and timing. He's also very warm and easy to ask questions (although in our case I'm sure it helped that we traveled a very long distance to see him and he knew it!)
On these forums, you will hear the saying "every child is different" quite frequently. It's a reminder not to get too caught up in how your child compares to other children, which can be traumatic and misleading, as so much differs from child to child, and similarities can be very misleading. But even despite these differences, some evaluation measures ARE provingto be fairly good at predicting final recovery without primary surgery. In any case, every doctor depends on comparison to other children's results to make recommendations for your child.
Doctors HAVE been working on evaluation techniques to predict natural recovery, in order to standardize indications for primary surgery and to enable comparison with results from other centers. Dr. Waters and the multi-center trial he is leading use a number of measures to evaluate the potential recovery of these kids, and the relative benefit expected from primary surgery. They have "validated" one of these measurement techniques as consistent regardless of the person doing the evaluation, and it is fairly easy to apply. Dr. Waters walked us through the evaluation of our child when we visited, and if you are interested, I can point you to some of the papers and/or help you try the evaluation on your child, keeping in mind that this would be IN NO WAY a replacement for being seen by an actual specialist.
Kate
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Re: New from NJ
Welcome Alicia! My name is Priscilla. My son James is 11 years old and RTBPI. You are in the right place for help and support!
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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: New from NJ
Welcome to the boards Alicia, and a hello to your daughter Mackenzie. I'm so sorry that you had to find our family because of this terrible injury to your daughter!
My name is Tanya, and I am the mother to Amber (21 months) with ROBPI Right Obstetrical Brachial Plexus Injury, or Erb's Palsy in her case), and Casey as well who is 9 years (no injury, but did experience shoulder dystocia).
Keep this in mind...it's a process. Learning everything that is available here and numerous other places is a process. You can't be expected to digest everything at once, which in itself is very frustrating.
Ask question upon question here and to your doctor(s). We are always happy to try to answer questions here, and your doctor(s) should as well.
My daughter falls in the moderate category and thus far has only had OT (occupational therapy), PT (physical therapy), and aquatic therapy. She's never had surgery, but unfortunately at this time we are considering surgery because her shoulder is dislocating more and more according to a recent MRI.
We see Dr. Scott Kozin at Shriner's Hospital in Philadelphia. Our experience with him has only been positive and I would highly recommend him. I have been to a seminar that he spoke at related to BPI (Brachial Plexus Injuries) and was thoroughly impressed with his knowledge of the injury and his approachability. I have not met any of the other BPI specialists that have been mentioned on this forum before, so I do not have any opinions on them to offer you.
In our case, we slowly learned more and more information over time, and asked many questions. The problem we have run into is that local doctors and agencies do NOT understand this injury well. We have been told numerous times by different agencies that there is no assistance for this injury, but with perserverance, we have gotten my daughter qualified for medical assistance to supplement our own private insurance which refuses to pay for her aquatic therapy (I swear by aquatic therapy!!!).
And keep in mind that those people who were involved with the initial care of your daughter after delivery who said, "this will go away" probably didn't know any better, but SHOULD HAVE!! I say this as a mother who experienced those same words said to her in the hospiatl (which this injury has not gone away for our daughter), and as a RN who works in labor and delivery. Before my daughter was born, I had been told by doctors that I trusted that this injury does go away, so it isn't a big deal. Now I know different, and I have since informed the nurses, pediatricians, midwives, and doctors that I work with, that this injury can be more severe and have provided them with information on how to prevent this injury, how to treat this injury initially while in the hospital, and how to talk with the parents of a newly injured child. Things are slowly changing at the hospital that I now work at because of the correct information now being given to the staff. Before my daughter's injury, they all believed the misinformation that they had initially been provided with. I know that by me defending staff at a hospital, I will probably tick some parents off, but this is truly how my experience has been before my daughter's injury. It does not excuse me or other staff members for telling parents the previous misinformation though. I just want to make the point that people are misinformed because they believe "old information" and you need to wade through it all very tediously.
Now I'm rambling. Back to Amber, my daughter. She is doing quite well in that at birth she only had wrist and finger movement and experienced the "waiter's tip" position (internally rotated arm with wrist bent). She didn't start therapy right away because a doctor we initially saw didn't believe therapy helped, but I knew as a nurse that this wasn't right, so I explored my daughter's options and found a new doctor. She now can raise her arm high up, although she tips her upper body to compensate a lot, but she manages to reach for things that she needs for her activities of daily living. Her arm is still internally rotated. She has no external rotation. She has difficulty supinating (turning her hand palm up), so she wears a McKie splint (it's a thumb splint with a supinator strap) so it helps her hold her arm in a more neutral position, so now she can supinate just past neutral but with much difficulty. Her affected arm is much weaker. When she does crawl around (which we encourage with therpay), she easily falls as her right arm doesn't hold up her weight too well. Her right scapula (shoulder blade) wings (sticks) out now. She has a small elbow contacture, too. She favors her left arm to do most activities. Oh, and by the way...she's the most beautiful girl in the world!!! and I'm so proud of her for all of her achievements thus far!
So, now that I've rambled, and rambled, and so on, my advice is to peruse these boards and find other sites and literature to educate yourself. Ask questions and love your daughter.
Feel free to contact me anytime if you'd like.
Tanya in NY
My name is Tanya, and I am the mother to Amber (21 months) with ROBPI Right Obstetrical Brachial Plexus Injury, or Erb's Palsy in her case), and Casey as well who is 9 years (no injury, but did experience shoulder dystocia).
Keep this in mind...it's a process. Learning everything that is available here and numerous other places is a process. You can't be expected to digest everything at once, which in itself is very frustrating.
Ask question upon question here and to your doctor(s). We are always happy to try to answer questions here, and your doctor(s) should as well.
My daughter falls in the moderate category and thus far has only had OT (occupational therapy), PT (physical therapy), and aquatic therapy. She's never had surgery, but unfortunately at this time we are considering surgery because her shoulder is dislocating more and more according to a recent MRI.
We see Dr. Scott Kozin at Shriner's Hospital in Philadelphia. Our experience with him has only been positive and I would highly recommend him. I have been to a seminar that he spoke at related to BPI (Brachial Plexus Injuries) and was thoroughly impressed with his knowledge of the injury and his approachability. I have not met any of the other BPI specialists that have been mentioned on this forum before, so I do not have any opinions on them to offer you.
In our case, we slowly learned more and more information over time, and asked many questions. The problem we have run into is that local doctors and agencies do NOT understand this injury well. We have been told numerous times by different agencies that there is no assistance for this injury, but with perserverance, we have gotten my daughter qualified for medical assistance to supplement our own private insurance which refuses to pay for her aquatic therapy (I swear by aquatic therapy!!!).
And keep in mind that those people who were involved with the initial care of your daughter after delivery who said, "this will go away" probably didn't know any better, but SHOULD HAVE!! I say this as a mother who experienced those same words said to her in the hospiatl (which this injury has not gone away for our daughter), and as a RN who works in labor and delivery. Before my daughter was born, I had been told by doctors that I trusted that this injury does go away, so it isn't a big deal. Now I know different, and I have since informed the nurses, pediatricians, midwives, and doctors that I work with, that this injury can be more severe and have provided them with information on how to prevent this injury, how to treat this injury initially while in the hospital, and how to talk with the parents of a newly injured child. Things are slowly changing at the hospital that I now work at because of the correct information now being given to the staff. Before my daughter's injury, they all believed the misinformation that they had initially been provided with. I know that by me defending staff at a hospital, I will probably tick some parents off, but this is truly how my experience has been before my daughter's injury. It does not excuse me or other staff members for telling parents the previous misinformation though. I just want to make the point that people are misinformed because they believe "old information" and you need to wade through it all very tediously.
Now I'm rambling. Back to Amber, my daughter. She is doing quite well in that at birth she only had wrist and finger movement and experienced the "waiter's tip" position (internally rotated arm with wrist bent). She didn't start therapy right away because a doctor we initially saw didn't believe therapy helped, but I knew as a nurse that this wasn't right, so I explored my daughter's options and found a new doctor. She now can raise her arm high up, although she tips her upper body to compensate a lot, but she manages to reach for things that she needs for her activities of daily living. Her arm is still internally rotated. She has no external rotation. She has difficulty supinating (turning her hand palm up), so she wears a McKie splint (it's a thumb splint with a supinator strap) so it helps her hold her arm in a more neutral position, so now she can supinate just past neutral but with much difficulty. Her affected arm is much weaker. When she does crawl around (which we encourage with therpay), she easily falls as her right arm doesn't hold up her weight too well. Her right scapula (shoulder blade) wings (sticks) out now. She has a small elbow contacture, too. She favors her left arm to do most activities. Oh, and by the way...she's the most beautiful girl in the world!!! and I'm so proud of her for all of her achievements thus far!
So, now that I've rambled, and rambled, and so on, my advice is to peruse these boards and find other sites and literature to educate yourself. Ask questions and love your daughter.
Feel free to contact me anytime if you'd like.
Tanya in NY
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old
Re: New from NJ
Hi Alica, welcome to these boards eventhough I am very sorry for the reason you're here. You have been given some excellent advice , just try to take it in a little at a time .......even read it over and over. We're all here if you need us !
Bless you and yours,
Lenni
Bless you and yours,
Lenni
Re: New from NJ
Hi Alica,
Where are you from in NJ? I am from Central NJ Middlesex County. Are we close to each other? My son Michael has a right BPI injury and has been in PT since he was two weeks old. Only until now are we going the surgery route. It would be great if we were local! Let me know.
Patty
Where are you from in NJ? I am from Central NJ Middlesex County. Are we close to each other? My son Michael has a right BPI injury and has been in PT since he was two weeks old. Only until now are we going the surgery route. It would be great if we were local! Let me know.
Patty