United Brachial Plexus Network, Inc.

Greetings! I am a proud parent of my son who sustained an BPI at birth on the 16th of March. My wife and I are very new to this and we were wondering if anyone can share stories/research they have found about this injury and how they/their loved ones were treated in the state of Minnesota. For example, our health care professionals have told us to pin our son's arm to his chest, yet I have seen on different websites that you should not pin the arm. Which one is it? How/where have you sought treatment in Minnesota?

Thank you for all your help!

Hi Greg and SaraH,

Sorry to hear about your son. My daughter has a RBPI and had surgery at Mayo in January. As for your question, I believe your health care people are telling you to pin his arm for your comfort, not his. It looks better having the arm pinned then just hanging there limp. I know it's hard to hear but pining his arm does nothing, my suggestion is to see a occupational therapist for range of motion excersises and see a BPI specialist, such as the doctors at Mayo in Rochester. You may find that there are not many BPI specialists at every clinic, so you may have to look out of town.
Its never to early to see these specialists, its common for non-specialized doctors to tell you to "wait and see" I personally did not, and am grateful we did. Early intervention and diagnosis is important.
Hope this helps.
Andy

Andy,
Thank you for they help and information. We started PT last friday and will consult with an OT this week. We are also going to Gillette in St. Paul in April. Was your experience at Mayo positive? We have heard "wait and see" since he was born and I cannot accept "wait and see". Our biggest concern is that the doctors and health professionals up here do not see cases like this often, if ever and I do not want my son to be a guiena pig or have a lower standard of care because of our location.

Thanks again!

So far our experience has been very good at Mayo. Lily is 2months post surgery and we have not seen any new improvements, which is expected. Give us another month or two and I can fill you in. I don't know about St.Paul, but if you go to Mayo you would see three doctors who perform 150 BPI related surgerys a year. Your son would not be a guinea pig there, actualy if you look them up (Bishop, Spinner, Shin) have many published articles on BPI.

Unfortunately, you will most likely have to "wait and see" even after you see a specialist. It's still important to get that initial consultaion done. For us we drove 7hrs for a 30min visit, but LIly was in the system and we moved forward from there.
Being that all injuries are different, there is still HOPE that your son may regain all his movement. The odds are in your favor. He may recover in following months without any surgical intervention!!!

BTW- We are originaly from Mankato. Now that we live in Omaha people say we talk funny, I just say ,ya sure you betcha.

Hi Greg and Sarah,
I am Amy 23 years old born and raised in MN I have an OBPI and have been treated in MN all my life. I started at Shirners, there is an excellent doc there, he also has treated me at the mayo. If you are more northern I can get you contact info for an amazing OT. I have a website full of my experiences if you would like to read more about my experiences recieving treatment in MN feel free to check out my website www.freewebs.com/bpimn
You can also email me anytime you want. I dont get a lot of time on UBPN right now due to being a graduate student and htis being my final month, I have about a million projects to complete between now and the middle of May.
I wish all the best for your little boy!
Hugs,
Amy 23 years old ROBPI from MN
hope16_05@yahoo.com

Greg and Sarah-

My daughter was diagnosed with ROBPI, she was born on 12-15-2009 at 11 lbs. At the hospital the doctors told us to not pin her arm, but when we went to PT and our Ped the told us to (only when being held, if sleeping or laying in swing not to). We choose not to as we were really the only ones holding her and were vary aware of the placement of her arm. The main reason they want you to pin the arm is so that it does not get snagged or pulled in the wrong direction.

It seems that most Dr's that do not completely understand the injury will tell you to wait, we went to see a Orthopedist, Neurologist when she was 3 weeks old and they all told us to wait in out a few more months....luckily our ped did not agree with this and said he would recommend us going out of state to see a specialist....we called around a few places....when we finally were put in contact with Shiners in Philly...where they wanted to see here by 4 weeks....it is very crucial to start seeing a specialist early on....as I am sure you have read from your research early intervention is necessary to have the most positive outcome.

Please feel free to contact me at marleneweber@yahoo.com if you would like to talk further. It is hard to find others going through the same thing. All I can say is that it will get easier, the days will seem less full of questions as to why, and what am I supposed to do!!

Marlene

Hello,

We live near Mpls in Robbinsdale. My daughter born 4-5-06 has a rbpi. We had very poor care initially, but I stayed persistent and kept advocating for her. We were going to children's mpls for ot for 2 years and then moved to park nic not because we were unhappy with children's our therapist just left. My daughter had surgery at 6 months she ended up needing a nerve graft surgery at Mayo. Our neurologist, therapist and peds doctor said they didn't believe in surgery for the injury but had no idea how severe my daughters injuries were . Once she turned six months and still could not get her hand to her face I knew something had to be done. You will read on these boards that there is a window of opportunity for surgery for the injury so wait and see just really is not an option. My daughters recovery was remarkable she will always have weakness, atrophy and discomfort but she is very strong and good at adapting. I should mention we went to Gillette's for my daughters follow up care. We liked it there but I didn't feel like the docs were as knowledgably as the ones at Mayo. Also it was reassuring knowing that Mayo had treated so many kids with the injury. At Mayo they make your appointments on a Brachial Plexus day where most people in the hand clinic have the same type of injury! I thought that was neat. Gillette's was good Mayo was excellent in my opinion. Let me know if you need any help navigating all this. I don't pretend to have all the answers but from one MN parent to another perhaps I can help duniachatham@hotmail.com

It isn't so much "wait and see" as it is "watch and wait". The only way to really know how well your child's injury is going to recover is to actually watch as it develops. You can do tests to rule out "worst case" (major avulsions that impacted the spinal cord) but beyond that the best way to tell what kind of injury was sustained and how well it is likely to recover is to have a knowledgeable person watching the recovery process. For instance, our son sustained a moderate injury. His hand was initially impacted severely but certain muscles started to recover at the one month mark, indicating that his lower roots were not permanently damaged but had been impacted beyond a simple "stinger". The timing of his triceps recovery showed how that his C7 had been somewhat damaged, but was recovering, indicating a stretch or partial tear. The timing of his shoulder recovery indicated that he had fairly severe damage to C5 and C6 but they were likely still connected, at least partially. Having a doctor knows what to watch for actually watching the process will yield a lot of information that may turn out to be important for future decision making.

Watching and waiting is THE hardest thing about this injury. Hang in there and don't forget to take care of yourself (after all, the birth was likely traumatic for you, as well) and above all, celebrate your precious new baby.

Kate

I am a new mom of a baby girl, Kaitlin who was injured at birth on March 15th 2010 , she is 6 weeks old today and had been doing OT for 3 weeks. I get so frustrated withthe "wait and see" approach. Its very hard on us and mostly I just dont knwo if her arm is hurting her or not. She also suffered from a broken clavicle. She can move her fingers and can press downward against our hand but she can not move at the elbow or bring her arm up at all. I live in a small town and have to drive 2 1/2 hours one way weekly for treatment and that is also where she will go to see a neurologist and have an mri next week. I am hoping it will show us something. We work with her everyday but still havent really seen any progress. I love her so much and hate that this happened to her. I pray everyday that it will heal on its own, but really just dont know. I am not sure what the future holds right now. I wish you the best and its helpful to see that there are others going thru the same thing.

Hugs , Angela

Thank you all for your kinds words and advice. How are things going with all of you and your wonderful patients? Elliott has been seeing specialists since he was three weeks old, has had two EMG's and is now scheduled for surgery on September 17. The surgery will be done at Regions in St. Paul by Dr.'s VanHeest, Pardington and Tanaguchi. We are hoping for the best and trust the people at Gilette. Has anyone had an experience with the Dr.'s above? Where have you all been going? Mayo still?

Elliott has not had a whole lot of progress. He cannot bend his elbow and has little to no deltoid movement. He can lift his arm at the shoulder to above 90 but not much else. Thank you again for your stories, support and prayers as we progress through this.