This will be my third attempt to get advice from other parents...another BPI mom gave me this website to try and work through alot of confusion and to try and help sort through so much different information. I have asked about 2 different clinics without any response...am trying not to feel overwhelmed by the difficult decision of selecting the right doctor. My son, Aiden 6 1/2 months old suffered a BPI during delivery--a result of very mismanaged delivery and have just discovered all the info online regarding specialist and evals and surgeries etc. First our insurance wanted us to see a Dr Wellons in Birmingham, AL--was not happy with that and did a little more research and was recommended to go see a Dr. Borschel at St Louis Children's Hosp...if anyone has any advice please respond to one of my messages.
Thank you
please--new here
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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: please--new here
Hi Misha,
I dont have any info on the Dr. you are asking about but thought I would let yo know there are some pretty good bp specialist through the Shriners system. That you dont have to fight your insuance on because Shriners cares for all children in need for FREE!
I hope that you are finding enough information to help make this injury a little easier.
Goos luck!
Hugs,
Amy 20 years old ROBPI from MN
I dont have any info on the Dr. you are asking about but thought I would let yo know there are some pretty good bp specialist through the Shriners system. That you dont have to fight your insuance on because Shriners cares for all children in need for FREE!
I hope that you are finding enough information to help make this injury a little easier.
Goos luck!
Hugs,
Amy 20 years old ROBPI from MN
Amy 28 years old ROBPI from MN
Re: please--new here
Misha, I don't have a lot of advice about OBPI as our son was injured later in life. But, I do know that it is VERY important that these kids are seen by a BPI specialist. As Amy said Shriners have some wonderful drs and treat minor children for free. Also at the top of the page is a resources link that may help you with your decision. Ask as many questions as you need here. You will find a wealth of information and knowledge from others that have been through this hard time before you and can help.
Sue
Sue
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candjwarner
- Posts: 16
- Joined: Sat Dec 29, 2007 1:54 pm
Re: please--new here
Misha,
I don't have a ton of advice because I am still learning the ropes as well! However, I do know that seeing a specialist is important. I also know that having more than one opinion is NOT a bad thing! Start where you are able to start and as you learn more, go from there. You don't HAVE to do what a BPI specialist says, but starting with one is the way to go! And as already posted, Shriner's hospitals are free which is really nice when dealing with insurance. I know we tossed around the idea of going to the one in Philadelphia (Dr. Kozin is his name). We've heard really good things about going there. However, there may be one closer to you.You can check out their websites for more info. I don't personally think starting at St. Louis would be necessarily bad, either though. Like I said, you just slowly gain more information as you go! Start where you are able to start. I hope this helps.
Jamie (mother of Titus 5 1/2 Months old, LOBPI)
I don't have a ton of advice because I am still learning the ropes as well! However, I do know that seeing a specialist is important. I also know that having more than one opinion is NOT a bad thing! Start where you are able to start and as you learn more, go from there. You don't HAVE to do what a BPI specialist says, but starting with one is the way to go! And as already posted, Shriner's hospitals are free which is really nice when dealing with insurance. I know we tossed around the idea of going to the one in Philadelphia (Dr. Kozin is his name). We've heard really good things about going there. However, there may be one closer to you.You can check out their websites for more info. I don't personally think starting at St. Louis would be necessarily bad, either though. Like I said, you just slowly gain more information as you go! Start where you are able to start. I hope this helps.
Jamie (mother of Titus 5 1/2 Months old, LOBPI)
Re: please--new here
Thank you all for your advice--have thought of possibly going to see Dr Kozin also--and have been very impressed with all the info online regarding Cincinnati Children's--that is actually the first website that I found and where I began to find alot of knowledge about BPI.
Re: please--new here
Misha:
Eight + years and ummmm a gazillion docs later, more info is better than less.
St. Louis is a well-known group. Their docs have done a lot of work. We didn't go there, however. I spoke at a conference at Cinci Children's and had an opportunity to talk with the team there. I was very impressed.
We see Dr. Kozin every year for a check-up. We see Dr. Waters about every other year, same thing. We went to LA to talk to Dr. Pearl.
This is a very complex and individual injury. Even two children with the same nerves injured will not have the same "disabilities".
If you go on the Medical Resources page of this website, you will find questionaires that the docs answered. It gives you a little insight into how they think. It also gives you contact information. Most of the docs are email-friendly, so drop them a note about your child and they will get back to you.
I am a big fan of Shriner's. It isn't just the no-fee policy. They are the only facility that requires a week of OT post-surgery. I think it shows how they view this injury, and I like that. I think that this will be how all major bpi centers function in the future.
Ask lots of questions, both here and to the docs. No question is stupid. There is a language of bpi to learn and it takes time.
I know things are overwhelming now. I remember that feeling. Please know that you will make the best decision you can. And that Aiden will grow up and play and have friends and go to school and make you happy and proud and, like all kids, totally tick you off too!
good luck,
claudia
Eight + years and ummmm a gazillion docs later, more info is better than less.
St. Louis is a well-known group. Their docs have done a lot of work. We didn't go there, however. I spoke at a conference at Cinci Children's and had an opportunity to talk with the team there. I was very impressed.
We see Dr. Kozin every year for a check-up. We see Dr. Waters about every other year, same thing. We went to LA to talk to Dr. Pearl.
This is a very complex and individual injury. Even two children with the same nerves injured will not have the same "disabilities".
If you go on the Medical Resources page of this website, you will find questionaires that the docs answered. It gives you a little insight into how they think. It also gives you contact information. Most of the docs are email-friendly, so drop them a note about your child and they will get back to you.
I am a big fan of Shriner's. It isn't just the no-fee policy. They are the only facility that requires a week of OT post-surgery. I think it shows how they view this injury, and I like that. I think that this will be how all major bpi centers function in the future.
Ask lots of questions, both here and to the docs. No question is stupid. There is a language of bpi to learn and it takes time.
I know things are overwhelming now. I remember that feeling. Please know that you will make the best decision you can. And that Aiden will grow up and play and have friends and go to school and make you happy and proud and, like all kids, totally tick you off too!
good luck,
claudia
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cassidysmom
- Posts: 167
- Joined: Mon Feb 05, 2007 8:56 pm
Re: please--new here
Hi Misha,
I'm so sorry to hear of your son's injury no child should have to go through this...
I unfortunately can't help you with the doctor situation (I live in Canada)but there are tons of parents here who will be able to.
And besides getting info about doctors, this site is amazing for therapy info and emotional support...everyone here knows what it's like to go through this and we're all at different stages of the game...don't be afraid to ask, ask, ask questions! My daughter Cassidy is 22 months and also suffered a ROBPI.
Cassidy had the primary nerve graph surgery a year ago and if I had not asked these wonderful people here all the questions I have, Cassidy would have missed out on some great opportunities by the way of surgery and therapy . A lot of doctors don't know anything about these injuries.....getting a good specialist is so important and I want to wish you the best of luck in deciding what doctor will be right for you and your family.....
take care,
Dawn, mom to cassidy 22 months ROBPI
I'm so sorry to hear of your son's injury no child should have to go through this...
I unfortunately can't help you with the doctor situation (I live in Canada)but there are tons of parents here who will be able to.
And besides getting info about doctors, this site is amazing for therapy info and emotional support...everyone here knows what it's like to go through this and we're all at different stages of the game...don't be afraid to ask, ask, ask questions! My daughter Cassidy is 22 months and also suffered a ROBPI.
Cassidy had the primary nerve graph surgery a year ago and if I had not asked these wonderful people here all the questions I have, Cassidy would have missed out on some great opportunities by the way of surgery and therapy . A lot of doctors don't know anything about these injuries.....getting a good specialist is so important and I want to wish you the best of luck in deciding what doctor will be right for you and your family.....
take care,
Dawn, mom to cassidy 22 months ROBPI
Re: please--new here
OK am still learning the lingo--what does LOBPI and ROBPI stand for and what is the difference??
Re: please--new here
left obstetric brachial plexus injury and right ob. brachial plexus injury
Re: please--new here
Misha,
I e-mailed my phone number to you. Please feel free to call if you'd like to speak "face-to-face" with another OBPI mother.
Welcome to the community. Like everyone here has said, feel free to ask anything you need to know. Everyone here is willing to help you in any way we can.
Mica
I e-mailed my phone number to you. Please feel free to call if you'd like to speak "face-to-face" with another OBPI mother.
Welcome to the community. Like everyone here has said, feel free to ask anything you need to know. Everyone here is willing to help you in any way we can.
Mica