United Brachial Plexus Network, Inc.

Friday, we took 10 week old baby Bradley for his
1st visit to the neurologist. In my opinion, Bradley was making great progress with the PT and ROM exercises. At first he had alomst no movement, now he can move his fingers,wrist,shoulder, and elbow with elimination of gravity. The neurologst stated he is not where he should be as far as improvement with the rbpi. What a let down! She stated she sees concerns regarding cognitive function as well. She states he is not responding to stimulus as he should be. What does she want, he is only 10 weeks old! He smiles,coos, and cries when he is hungry. Anyway, she stated he needs an MRI as well as a C-scan, to determine brain function and what nerves are damaged. I was horrified. He needs to be put under for this proceedure. I'm thinking about getting a second opinion. She also stated she is seeing early signs of lbpi. When she touched his left arm with a paperclip, she got no response. I'm totally confused. I didnt think this injury was something that showed early signs? I thought the damaged was done. She also made it a point to state the injury was not caused by the delivery. What is she nuts? I was cut front to back. I'm only 5 feet tall and had gestational, and the Dr. told me to STOP PUSHING as soon as his head came out. If anyone knows any good pediatric neurologists in the Philadelphia area or has any advise please respond:-)

Take Care All,
Allison

Hi Allison

Sorry you are being hit with all this scary stuff when you thought your baby was doing so well. First off, I STRONGLY suggest that you see a BPI speicialist. UBPN has a list of BPI doctors you should take a look. There is Dr. Waters who is excellent in Boston and if you don't find someone near you, it may be worth hoping on a plane to TCH for a thorough eval (that is what we ended up doing). They will also watch video's and give you feedback for no charge. I am guessing this neurologist does not just specialize in BPI's, and I cannot tell you all the misinformation that we were given before we got to the specialists. Your little one's movement sounds encouraging, but one thing I have learned is that it is the movement against gravity (sitting up right) that matters. Your baby is still young and you still have time on your side so keep up your hopes. Our little guy was scheduled for primary and we waited as long as we felt comfortably possible to do the surgery. He had enough recovery at 7 mths. that the surgery was cancelled. I wish you the best and hope you are able to get in touch with a specialist soon.

Just another thought. If that doctor is telling you that the injury was not caused during the delivery she obviously doesn't have a whole lot of knowledge about this injury. The specialists all know the cause of this injury and will be upfront with you if you discuss this. I would really go elsewhere. Take Care,Elisa

A second opinion is always a good thing to get. But in her defense, most doctors try not to have to perform other testing such as an CT scan or MRI, so its good that she's really investigating all aspects. Our daughter had an MRI at 4-5 months, she was put under, but it was a liquid seditive she drank and she was out for about 45 minutes, the entire time she was in the MRI tube. We were able to sit in the room with her while the testing was being done, just in case she woke up. I have no idea why a neurologist would say it's not delivery related, that's crazy. How could she know that. Unless they find through the MRI that your child had a stroke in utero, I'd ask her to clarify how she would know if it was delivery related or not, ask her to show you some type of data to back-up her comment or a study to prove her point.

Unfortunately there seems to be an epidemic on neurologists in the philly area telling moms that their baby's injury happened in utero...imagine that. I guess this doctor has microscopic eyes - she can see inside and see that the nerves didn't suffer from a traction injury. Sorry if I'm so sarcastic about this - I have never had good luck with doctors concerning bpi - in philly.... and that's why we go to Texas.

Allison - I emailed you. Perhaps we can meet sometime - there are quite a few new moms in this area recently - unfortunately.

Where are you going for PT ??

-francine

Hi Allison,
I am so sorry to hear that you are going through this. I know the feeling when you think your baby is improving and the specialist say the opposite. What does matter is they have to be doing this while sitting up. I went to see Dr. Grossman in Miami and really like him. I know that he does make visits in New York. If you would like his number feel free to email me. You little angel is still young so don't let your hopes get down. Good luck to you and Bradley.
Dana

Allison, Just several months ago I was in the same position as you are. We went to see a neurologist in our state (CT) and my daughter was only 2 months old. He said he was disappointed and expected her to have much more movement and progress for being 2 months old. He said he would see her again in a month from then. In my opinion at that time I swore to everyone that he was nuts b/c of the progress I saw in her everyday. Everyone thought I was in denial, but I believed she was doing so much better at that time. I didnt feel comfortable with his words or how he felt about my daughters injury even though he was the doctor. So to make a long story short we made an appointment to see Dr Waters in boston who is 3 hours away and got in for the following week. He said that he must have been looking at a different baby from what the neurologist here said about her. Now when I look back, I believe what the doctor here saw and what he thought at that time was probably his totally honest and best medical advise, but since he wasnt a BPI specialist he really didnt get it right. Everything this other doctor said at 2 months was wrong and she is doing wonderfully. He even said that he thought my daughter had ptosis and Klumpkees Palsy. Way wrong!
So I think you should calm yourself down as best as you could and keep negative thoughts aside until you could get to see a Brachial Plexus specialist. We didnt do a MRI or any test yet and Ella is almost 7 months old. I think that decision is different for every doctor though...
All I could say to you now is that I wish you the best of luck and please try to stay positive!
Krista

When my daughter was injured seven years ago the neurologist who saw her in Miami was actually specializing in bp. At first he was just monitoring her progress and at three months he had her do the electrical test. Eventually she was seen by Dr. Grossman and he sent for her to have an MRI. THey said that it was to late for the surgery and that she would only improve about 5%. So to make a long story short. We did phisical therapy constantly. We made sure that she used her injured arm for every thing. She ate with it even though it was a mess. She wrote with it. She picked black beans out of raw rice forever. She now plays tennis three times a week and is very good.She will start playing tournaments in a few months. When she was born she coulndn't even move her fingers. She doesn't have full range but she is constantly making the arm stronger. Every day she strectches her arm. We massage it. I can't tell you how many things we do. We taught her how to walk moving both arms, because she would only swing one. Every time I go to the orthopedic surgeon he is amazed at how well she is doing. The tennis has really helped. The coach works on range of motion constantly. The only thing I can tell you is read investigate and persistance over resistance. If your not happy with what the doctor says see another. My doctor said she would never be able to use the arm like her other, but she does!