United Brachial Plexus Network, Inc.

She is only 5 weeks old but we have seen her paed. quite a few times.

He said today that he has been working for 22 years and has seen about 2-3 of these cases (BPI) each year. This was in response to my asking to see a specialist. I don't think that he was offended particularly, just letting me know that he had experience. The confusing part was when he told me, quite frankly, that he has never seen a patient with this little recovery (none) at this stage (5 weeks).

I think that he heard himself talking and then decided that he could write a letter to paediatric neurology in Saskatoon to ask what steps we take next. I think that he's very competent in general paeds but we need a specialist. I think he recognises that now. Whew!

Anyway, no real point to my post, just letting you know that we are still getting attention.

Avery has lost some range in her shoulder and her supination's really tight. We have some supports in her car seat now and her arm spends a lot of time pinned up (her sleeve to her chest) because it releases her wrist.

Bonnie

Glad he could admit maybe he needed help!!! Good luck!
T.

I think you ought to check on a wrist splint instead of pinning the arm to the shirt, I think that pinning could lead to problems with the elbow and contractures. I know it's hard to think of the future right now, but times will go by quickly and every little thing seems to matter when concerning this injury

I am so glad you will be seeing a specialist. It is sooo important.

Also, I am a little concerned about pinning the arm to the shirt. I have heard this is not a good idea. You may want to get a few opinions on it. You can always call Texas Childrens Hospital Brachial Plexus program coordinator, Lisa Davis, over the phone. They have MUCH experience and will offer their opinion.

Are you doing range of motion exercises throughout the day - so important to be doing right now.

Best wishes to you and your little one.

Hi Bonnie, I think you are on the right track, seeing the pediatrican, but realizing you need a specialist. Avery is still young, but it's a good time to start making connections with BP Specialist. I consider our cluster of Doctors "my daughter's team". She see's a Ped. Nuerologist, 2 PM&R Doctors, an Ortho. Spec., the TCH Team and of course her regular Pediatrician. Her Pediatrician has stated - although he has seen a few BP cases, he is no specialist, but will help us get to any that we need. It's a great comfort to have that support. Let me say that we are facing a tough surgical decision and tapping into to her entire team for advice right now. It's always helped us to hear the recommendations and treatments from different sources, so we can then research and make the best choices for our daughter. Best Wishes to you and your family.

Hi Bonnie - we had a cock-up splint made for Emma's wrist when she was a week old (on the advice of TCH). Her hand was drooping before, but now she seems to be able to hold it up better. She doesn't have to wear the splint all the time anymore. An OT should be able to make one for Avery.

Good luck
Sarah

Thank you for your suggestion. I will look into getting a splint for her arm.

It is really frustrating having to ask for every single little thing! Yesterday I had a very confusing chat with the receptionist at the paed's office. I was trying to find out if he'd (the Dr) been corresponding with our GP. I started to wonder if I was speaking a foreign language! The receptionist was just sort of staring at me with a glaze over her eyes. "Well, he's not going to write a letter every time you step through the door." Was her response. I explained that our GP had only received 1 letter ever and was under the impression, when I saw her on Wednesday, that Avery was going to make a full recovery. She had only received a letter from Avery's first consult at the hospital on her 2nd day.

I filled my doctor in but thought that they would keep better communication. I guess it's up to me. How frustrating. I don't really need another thing to keep track of!

Thanks,
Bonnie

My daughter was injured at birth. c5,c6,c7 was severed. My husband is a pediatrician. He has seen cases of children with brachial plexus but none as bad as his child. In all of his medical books it always stated that the child would get better over time. He is currently spending alot of time educating other doctors on the truth about bpi and what to do to help their patients when they enter the office.

I learned this weekend that pinning the sleeve/arm is really bad - sets up a pattern of holding that is really hard to break. Hope you can get a splint soon.
-francine

Hi Bonnie, I also live in Canada, BC, and I have a six year old with RBPI! Ashley was given a splint/sling which she wore for the first 4 weeks of her life, it didn't do anything for her though. I think the intent was to simply let her shoulder rest after the injury! Anyway she had a limp arm with no recovery until she was 10 weeks old! After 10 weeks she started to recover and has continued to do so ever since. We have a neuroligist at Children's Hospital, and Neurosurgeon, a Plastic Surgeon and a Orthopeadic Surgeon! Ashley sees them about once a year for follow ups and just last week ,she was scheduled for a muscle and tendon transfer, her surgeon examaned her and realized she had made a small bit of improvment so he postponed her surgery for another year! I am not saying her arm is working normally, she is far from it but she is still improving ever so slightly!

Anyway Bonnie, I thought this information may be of use to you and I wish you and Avery all the best!

Lenni