needing guidance for my baby boy
needing guidance for my baby boy
I am new to this website and topic as my new born received a bpi during birth approx. 12 days ago. Needless to say we are a little upset and are being told to give it time and a little physio. It seems that the injury has affected his upper arm. I am going to pursue a regiment of acupuncture and would like to know if any of you have tried this as a course of action with any result. My personal experience with acupuncture has been excellent but it wasn't for this type of injury. Also, it sounds like this injury is painful based on some of the message postings I read ... if so could you describe it for me...(I recognize it will be different for everyone) Obviously I have many more questions but I will limit it to this... looking forward to replies....Happy Holidays
Re: needing guidance for my baby boy
Rich
Congradulations on your new baby boy.
I really don't know about acupuncture for bpi because when I was injured my parents did ROM and I was braced. I never had a needle in my bpi arm because the doctor said I must not because of this injury.
There is a great deal of information for you to read on the Awareness pages so that you are well informed when you do go to neurologist...
One of the most important questions I ask is how many other bpi patients does this doctor have. While this is not really a rare injury not every doctor has experience treating it.
I would recommend that you look for a neurologist in your area. It is important to have the baby checked by a doctor who has experience with this injury. And you will need to start ROM...
I don't know the area you live in but if you are in the states there are many parts of the country with many hospitals and doctors who treat obpi.
I use massage therapy, PT, Chiro.
Pain is hard to define. There is pain connected with injury of any sort. This injury is very complicated and has many different effects on our bodies. Many times doctors say that there is no pain connected with this type of nerve damage. I felt pain and it was always there. You cannot pull, rupture or sever the nerver's without pain.
Good luck
Kath
Congradulations on your new baby boy.
I really don't know about acupuncture for bpi because when I was injured my parents did ROM and I was braced. I never had a needle in my bpi arm because the doctor said I must not because of this injury.
There is a great deal of information for you to read on the Awareness pages so that you are well informed when you do go to neurologist...
One of the most important questions I ask is how many other bpi patients does this doctor have. While this is not really a rare injury not every doctor has experience treating it.
I would recommend that you look for a neurologist in your area. It is important to have the baby checked by a doctor who has experience with this injury. And you will need to start ROM...
I don't know the area you live in but if you are in the states there are many parts of the country with many hospitals and doctors who treat obpi.
I use massage therapy, PT, Chiro.
Pain is hard to define. There is pain connected with injury of any sort. This injury is very complicated and has many different effects on our bodies. Many times doctors say that there is no pain connected with this type of nerve damage. I felt pain and it was always there. You cannot pull, rupture or sever the nerver's without pain.
Good luck
Kath
Re: needing guidance for my baby boy
On the general message board you will find connections with other parents whose babies/children have bpi injuries. Francine is a really good connection. On this website you will learn that the general board is for parents and it appears to be a really great place to post this kind of question. I hoped I helped.
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Re: needing guidance for my baby boy
Dear Rich,
This is a relatively new site for me also, but I had my birth injury in 1944. So you can see I've been with what I guess was formerly called Erb's Palsy for the 57 years of my life. Erb was the first medical doctor to describe this particular injury at birth, when the brachial plexus (nerves and nervous tissue) is damaged by an over extension of the arm and shoulder during delivery. These tissues are torn apart partially. Most Erbsonian babies are large and have difficult deliveries. If this is what happened during the birth of your baby, the most important thing is for the arm to be placed in a position so that the nerves are allowed to grow back together. The effected arm is placed over the head in a removable brace. Kathleen talks about "bracing" in her message, that is what she is talking about. The sooner you get this done, the better is the result. Don't delay and don't dispair. Once the nerves have a chance to grow back together somewhat, much of the damage caused will be repaired. I just want to tell you brifley and generally about myself. I am a successful business man, I have a nice family, I hope to retire to Lake Arrowhead in a couple of years, and although this may sound weird to you, having this injury has been an encouragement to me to achieve. I have driven myself and found a profession in which I gain much enjoyment. Also, people rarely notice what has happened. There is no limp, and I've always been thankful that my leg was not the problem. I'm kind of rattling along here, and don't know what you would like to know about the new world you and your family have entered into. Just for your information Josef Stalin had Erb's (untreated)- you couldn't say it held him back - . If I can be of any service to you, please don't hesitate to drop me a line. It's a trite old saying, but the reason it's been around so long is because of its veracity, "Time heals all things." Best to you and your new baby. Evan
This is a relatively new site for me also, but I had my birth injury in 1944. So you can see I've been with what I guess was formerly called Erb's Palsy for the 57 years of my life. Erb was the first medical doctor to describe this particular injury at birth, when the brachial plexus (nerves and nervous tissue) is damaged by an over extension of the arm and shoulder during delivery. These tissues are torn apart partially. Most Erbsonian babies are large and have difficult deliveries. If this is what happened during the birth of your baby, the most important thing is for the arm to be placed in a position so that the nerves are allowed to grow back together. The effected arm is placed over the head in a removable brace. Kathleen talks about "bracing" in her message, that is what she is talking about. The sooner you get this done, the better is the result. Don't delay and don't dispair. Once the nerves have a chance to grow back together somewhat, much of the damage caused will be repaired. I just want to tell you brifley and generally about myself. I am a successful business man, I have a nice family, I hope to retire to Lake Arrowhead in a couple of years, and although this may sound weird to you, having this injury has been an encouragement to me to achieve. I have driven myself and found a profession in which I gain much enjoyment. Also, people rarely notice what has happened. There is no limp, and I've always been thankful that my leg was not the problem. I'm kind of rattling along here, and don't know what you would like to know about the new world you and your family have entered into. Just for your information Josef Stalin had Erb's (untreated)- you couldn't say it held him back - . If I can be of any service to you, please don't hesitate to drop me a line. It's a trite old saying, but the reason it's been around so long is because of its veracity, "Time heals all things." Best to you and your new baby. Evan
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Re: needing guidance for my baby boy
Rich, I forgot to mention. There is no pain from this birth injury. Don't be mixed up by some of the things people report on this site. There is brachial plexus damage that can occur after a normal birth. Usually this occurs when there has been some kind of accident, car or work related. This is, in my mind anyway, a completly separate issue and it is unfortunate they are mixed into one heading here. Erb's Palsy, the birth injury may be lumped together, but the ramifications are so different. These people usually have pain, but it's from the truama induced accident, not from a birth injury.
Welcome To the Message Boards!
Hi Rich and congratulations on the birth of your sweet little baby boy - 12 days old!
There is a web page that is directed at parents of newborns who have been injured during their births.. the direct link is
http://ubpn.org/awareness/A2001newparentguide.html
Also - the main Awareness section gttp://ubpn.org/awareness you will find a lot of information if you click on the Birth Injury link.
There is still a lot of time to find out if your son is temporarily injured or permanently and severely injured. Time will tell. They all look for hand-to-mouth movement at 3-5 months of age basically.
If your son as NO movement whatsover by 6 weeks of age - then you need to contact a brachial plexus specialist immediately. Where do you live? We might know of a brachial plexus specialist near you?
In the meantime, the best think you can do is to have the therapist teach you and your wife how to range of motion exercises (ROM) - which you will do with each diaper change basically... and also see a therapist once a week as you pass through these crucial weeks.
As everyone mentioned already, the general board is where parents who have injured babied go to post...so I hope to see you there. We're a good bunch and we're all going through the same thing.
My daughter, Maia is now 3 1/2 years old. If you want to read about her you can find it at http://www.injurednewborn.com/maia/homepage.html.
I also have a prevention page - this page will explain to you how these things happen. http://www.injurednewborn.com
Take care - kissies to your wee one and regards to your wife as well,
francine
ps- one more thing....
write to joann@ubpn.org and give her your full name and address and she will add you to the UBPN mailing list and also send you a copy of their latest newsletter
There is a web page that is directed at parents of newborns who have been injured during their births.. the direct link is
http://ubpn.org/awareness/A2001newparentguide.html
Also - the main Awareness section gttp://ubpn.org/awareness you will find a lot of information if you click on the Birth Injury link.
There is still a lot of time to find out if your son is temporarily injured or permanently and severely injured. Time will tell. They all look for hand-to-mouth movement at 3-5 months of age basically.
If your son as NO movement whatsover by 6 weeks of age - then you need to contact a brachial plexus specialist immediately. Where do you live? We might know of a brachial plexus specialist near you?
In the meantime, the best think you can do is to have the therapist teach you and your wife how to range of motion exercises (ROM) - which you will do with each diaper change basically... and also see a therapist once a week as you pass through these crucial weeks.
As everyone mentioned already, the general board is where parents who have injured babied go to post...so I hope to see you there. We're a good bunch and we're all going through the same thing.
My daughter, Maia is now 3 1/2 years old. If you want to read about her you can find it at http://www.injurednewborn.com/maia/homepage.html.
I also have a prevention page - this page will explain to you how these things happen. http://www.injurednewborn.com
Take care - kissies to your wee one and regards to your wife as well,
francine
ps- one more thing....
write to joann@ubpn.org and give her your full name and address and she will add you to the UBPN mailing list and also send you a copy of their latest newsletter
ps - about acupuncture
We did/do acupuncture as do many some other families.
It helped Maia with pain - but only for about 3 days and we just couldn't afford to take her 3 X a week....
It will help with healing because that's what it's all about BUT if your child has a severe injury, meaning one or more ruptures or avulsions there is NO alternative that will repair this.
And it's because of how nerves grow back.... When a nerve is cut in half and it tries to grow back it's actually quite amazing. Dr. Nath at Texas Childrens Hospital gave a lecture and had a video/slide presentation. In it he showed video of nerves growing back.... it's like arms moving all over the place... they grow and move and spark - truly amazing. But what happens is that they don't know how to connect in an orderly fashion. Sometimes they do and sometimes they don't and what happens is that a big gloppy ends of forming - this is called a neuroma. It is a ball of scar tissue - like ball of yarn all mushed together with gloop over it. (am I being articulate or what?? hehehe)... in that neuroma some nerve strands may connect and some won't.
Acupuncture will force chi through the fascia system because that's where the meridians travel, but it won't make the nerves grow straight to get to the other end - does that make sense? I also worry about doing VERY vibrational work on these children while they are healing because of how delicate the nerves are.... there may be a nerve growing back and reaching the other side...and will the vibration disrupt this? Something to think about.
I don't want to turn you away from using alternatives BUT just keep a watch on the timelines like anyone else and you will see how the recovery is progressing.
I am a shiatsu practitioner so this is what I do for my life's work - but the truth of the matter is that no matter how many alternatives we tried to help Maia - she still had ruptures and only surgical intervention helped her situation.
anyway - if you'd like to go into further discussion about this just email me at francine@injurednewborn.com
Take care,
francine
It helped Maia with pain - but only for about 3 days and we just couldn't afford to take her 3 X a week....
It will help with healing because that's what it's all about BUT if your child has a severe injury, meaning one or more ruptures or avulsions there is NO alternative that will repair this.
And it's because of how nerves grow back.... When a nerve is cut in half and it tries to grow back it's actually quite amazing. Dr. Nath at Texas Childrens Hospital gave a lecture and had a video/slide presentation. In it he showed video of nerves growing back.... it's like arms moving all over the place... they grow and move and spark - truly amazing. But what happens is that they don't know how to connect in an orderly fashion. Sometimes they do and sometimes they don't and what happens is that a big gloppy ends of forming - this is called a neuroma. It is a ball of scar tissue - like ball of yarn all mushed together with gloop over it. (am I being articulate or what?? hehehe)... in that neuroma some nerve strands may connect and some won't.
Acupuncture will force chi through the fascia system because that's where the meridians travel, but it won't make the nerves grow straight to get to the other end - does that make sense? I also worry about doing VERY vibrational work on these children while they are healing because of how delicate the nerves are.... there may be a nerve growing back and reaching the other side...and will the vibration disrupt this? Something to think about.
I don't want to turn you away from using alternatives BUT just keep a watch on the timelines like anyone else and you will see how the recovery is progressing.
I am a shiatsu practitioner so this is what I do for my life's work - but the truth of the matter is that no matter how many alternatives we tried to help Maia - she still had ruptures and only surgical intervention helped her situation.
anyway - if you'd like to go into further discussion about this just email me at francine@injurednewborn.com
Take care,
francine
Re: needing guidance for my baby boy
Thank you for your response. Actually, one of my first questions I did ask my pediatrician was 'how many bpi patients he had treated'. He said a few. Some how I doubted that when he told me. I live in peterbourough, Ontario. This is a relatively small community for this this type of injury. Anyway, I appreciate your response.
Re: needing guidance for my baby boy
Evan,
Thank you for the heart felt response. i think what you stated was exactly what i needed to hear. Obviously, we feel that our 'perceived' world has sort of changed but i'm not that shallow to allow that. In a way, it does introduce us into a whole new world that we probably would never have known. I guess my fears are really for my son versus "cruel worl". But as you know adversity will make you stronger. I really do appreciate your reply. Thank you and good luck with your retirement plans. ...Rich
Thank you for the heart felt response. i think what you stated was exactly what i needed to hear. Obviously, we feel that our 'perceived' world has sort of changed but i'm not that shallow to allow that. In a way, it does introduce us into a whole new world that we probably would never have known. I guess my fears are really for my son versus "cruel worl". But as you know adversity will make you stronger. I really do appreciate your reply. Thank you and good luck with your retirement plans. ...Rich
About Evan's post
In all due respect to Evan's post, I want to add some comments....
Each baby's injury is different, each baby's rate of recovery is different, each baby is completely different - no two are alike. What works for one may not work for the other. What they suggest for one might not be suggested for another.
Pain - there absolutely is pain for many children who have birth injuries. My daughter has gone in and out of severe pain for 3 1/2 years. She has had inflammation- she has had swelling- she has had severe pain. After her surgeries she is morphined to the max and then feels pain for at least 1-2 months post surgery. Then she is in pain for the splint removal - severe pain for a week and then pain for the rehab. She gets 'stingers' as they call it - where a pain shoots down her arm and she screams. Maybe Evan had no pain - but that's his experience - just one out of a million.
Bracing - they do not brace the arm up like that anymore... it's now 60 years later - things have changed. A PT/OT will know what splints should be used for your child if any. Usually at an early age they splint the wrist if the wrist is in the "waiter's tip" position to bring it to a more neutral position. Later on you will see other splints if they are needed - like elbow extension splints, supinator splints, pronator splints, dynamic splints, etc. The arm doesn't get put up now until there is a surgery to correct something.
Rich - you will find details of my daughter's three surgeries on her website - and they show the splints and all.. http://www.injurednewborn.com/maia/homepage.html.
I'm not posting any of this with any anger or malice toward's Evan so please don't take my post the wrong way - just wanted to balance the information out a bit ok?
Will be praying for your son's recovery and hopefully none of this information will be necessary. A very high percentage of babies do have spontaneous recoveries...I hope your son falls into that column.
Blessings,
francine
Each baby's injury is different, each baby's rate of recovery is different, each baby is completely different - no two are alike. What works for one may not work for the other. What they suggest for one might not be suggested for another.
Pain - there absolutely is pain for many children who have birth injuries. My daughter has gone in and out of severe pain for 3 1/2 years. She has had inflammation- she has had swelling- she has had severe pain. After her surgeries she is morphined to the max and then feels pain for at least 1-2 months post surgery. Then she is in pain for the splint removal - severe pain for a week and then pain for the rehab. She gets 'stingers' as they call it - where a pain shoots down her arm and she screams. Maybe Evan had no pain - but that's his experience - just one out of a million.
Bracing - they do not brace the arm up like that anymore... it's now 60 years later - things have changed. A PT/OT will know what splints should be used for your child if any. Usually at an early age they splint the wrist if the wrist is in the "waiter's tip" position to bring it to a more neutral position. Later on you will see other splints if they are needed - like elbow extension splints, supinator splints, pronator splints, dynamic splints, etc. The arm doesn't get put up now until there is a surgery to correct something.
Rich - you will find details of my daughter's three surgeries on her website - and they show the splints and all.. http://www.injurednewborn.com/maia/homepage.html.
I'm not posting any of this with any anger or malice toward's Evan so please don't take my post the wrong way - just wanted to balance the information out a bit ok?
Will be praying for your son's recovery and hopefully none of this information will be necessary. A very high percentage of babies do have spontaneous recoveries...I hope your son falls into that column.
Blessings,
francine