United Brachial Plexus Network

Hi,

I was just wondering,what has the reaction of your child's pediatrician been thru this whole ordeal? My son just turned 3 and was in for his check up. Bryce just had surgery this fall. I told the Dr. "he had surgery on his shoulder" and he said " I can see that". Nothing else was mentioned. he never asked one question about it. I felt that his response was very cold.When ever I would take him for a visit,the Dr. would dangle keys in front of him to try and get him to lift his arm. Then he would say "your doing fine". Bryce has come a long way but this Dr. was not an expert on the subject.
I guess I just wanted to vent. His response didnt leave me feeling warm and fuzzy,thats for sure!

Felicia

Felicia,
I think that they just don't know enough about this stuff and maybe feel wierd about asking for more info from you? How about if you give this doc an Outreach? keep him more up-to-speed about what Bryce is having done - show him surgical reports and explain it in detail. If he's truly a good doctor - he'll take interest. If he doesn't - then it's time to find a new doctor.
My GREAT pediatrician just left her practice - no forwarding information! ACK!! How does one find a compassionate doctor these days?
-francine

I do not know a single pediatrician in my area (a cultural armpitt) who would know crap about babies never the mind babies with a BPI-
oooops, venting, sorry, lol,
The pediatricians I know, know about childhood illnesses and legal liability, Im not sure about much else, and while Im convinced there are many exceptions I do not think I know too many personally-
soory 'bout that.
You are definately within the sane realm if you concluded that your ped knows little about your child's BPI.

I agree with Francine. I'm sure the doc knows nothing about bpi's. However if he was a good doc, he might ask a few questions. Swallow his pride and all that. Even look it up behind the scenes. Since those probably aren't likely to happen, I'd do just what Francine suggested - give him information on it. Just a casual toss "here's something interesting" as you walk out the door. Choose carefully what you give him because he may not look at a bunch of stuff. Argh! Makes me mad! My ped was always willing to hear about what was going on with my son as far as therapy/surgery etc goes. She directed us to OT before we even left the hospital(when he was born) - in fact, called the OT herself and set up an appt. LOVED HER! A N D T H E N - - horror of horrors, our insurance changed. I stuck with her for a year or so and paid out of pocket, but eventually had to switch for $ issues. I still think about going back though. Well anyway - I'd switch docs myself if he doesn't shape up. NO QUESTION.

Not knowing BPI stuff is one thing, but not expressing an interest to learn and be involved to some minimal degree is another. I would probably be a little upset about it.

Have you passed on information and talked about how since he is the pediatrician you would really appreciate him having an understanding of the complexity of the injury? Our ped said our son would be fine, "they always are". We were very frustrated and found that along the whole way we had to help educate her about the seriousness of this injury and its longterm impact. However she has seemed interested in learning and recognizing the seriousness of the injury, which helps.

When people minimize this injury, especially our own child's doctor, it hurts (at least for me). I would pass on good info. Maybe actually type a list of all the secondary things and everything related and pass it on. Let him know how important his support is to you and how he is a team player in watching for changes, things like scoliosis, etc. Also, I would hope he knows enough to refer other kids out to specialist in the future. Just because a kid can reach for keys doesn't mean he is okay.

Hope things get better.

From day one when my daughter was born the doctors who have worked with her have been very good (OB/GYN not included I have never heard from her again). What they didn't know about bpi they researched and got us information and answers to our questions. My daughter was in the NICU and the doctors there told us about her injury right away, got the neurologist there the next day and starting running tests and a CT. We are the first family our neurologist has had to send to TCH and he is very interested in the progress of my daughter and her treatment. After reading some of the stories I feel we are very lucky to have had doctors and a hospital that told us about the injury immediately and got us to therapy starting the 2nd day out of the hospital. Vanessa is 4 months now and has come a long way, with a long way yet to go. If anything at least I have some peace in knowing that the doctors I have choose to help her recover really are trying and are interested in her well being.

I am happy to say that our pediatricians have been very interested in Juliana's progress. I give them copies of Outreach, they have copies of all of her surgical reports and defer to TCH in all areas of her bpi care.
I told them of the NY Picnic and to my joy, one of the docs came. He and Dr. Nath had a long talk and he got to hear the end of Dr. Nath's presentation.
I consider myself lucky to have doctors like this.
I think that we should all be giving info to them, though. I know my docs are running a very big practice and that they might not have the time to look up information on an injury that one kid has. However, they are very thankful for my input and have been supportive of my choices for her.

claudia