United Brachial Plexus Network, Inc.

My daughter is 2 mos old and has BPI. She was a large baby and was stuck during birth. Needless to say I'm rather upset that the resident Dr didnt listen to my concerns and that the ultrasound was off by more than 2 lbs!

We have an appt on June 11th at Shands. I want to know what questions to ask and what to expect.

She's been going to OT since she was 3 weeks old. The therapist has mainly taped her arm. We've noticed changes but she's not using her thumb much or her shoulder.

I dont want to rush into surgery yet I also don't want to miss out on doing treatments that should be done in a timely manner.

I had a 32 week preemie and that was a breeze compared to this!!

Thanks
Carol

Carol,

I am so sorry that you need us, but I am very glad that you have found us. It is excellent that you have had your baby in OT already- as early intervention is key. Also you need to be doing GENTLE Range of Motion excercizes with your baby. If you have not been taught to do this yet, ask your OT for instructions. This is VERY IMPORTANT, and needs to be done several times each and every day- I made it part of a routine diaper change.

It is promising that you have noticed improvement. Knowing what I know now, if my own daughter were 2 months old again, I would have her at a BPI specialists strait away. You can find several great doctors on UBPN, 2 of which are Dr. Kozin and Dr. Nath.

Advice for now: Learn everything you can. Read everything you can find. Get second, third, forth opinions. Trust your own instincts. And most importantly: LOVE and ENJOY your baby.

I know this is all very overwhelming right now. I have been there. As I look at my own 3 year old daughter (she has a bilateral injury- both her arms are affected) She is more beautiful, strong, and EMPOWERED than I have ever been. Your daughter will be too.

As for the preemie- I know what you mean. My son whas born at 33 weeks. I thought that sitting next to that isolette was the hardest thing I would ever do. Then my daughter was born. After this- the isolette seems like a walk in the park. Pretty sad huh.

Hugs,
Veronica
Mom of Olivia, 3, Bi-OBPI

Hi
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Message was edited by: Jessica'smom

Thanks for the input.

She has an appt with Dr Anjeles. Her OT says he is a very good doctor. I have been doing the ROM exercises since she was about a week old. I started doing them on my own. I just did what felt instinctively right.

I have a BPI injury to my left arm from an accident when I was 20 (Im 39 now) so I know what it feels like I truly dont want my little one to have to deal with it.

The OT says that she shows promise.. she bends her elbow, flexes her hand, etc but her shoulder is messed. She says its over triggering other muscles and pulling the joint out of place.

Im so glad I found this board.

The ot and pt did tape my daughters arms when she was a baby, and I think it is fairly common. The taping, for us, didnt last long though, because my daughter has an allergy to the tape.

How horrible that both you and your baby have a BPI. I cannot tell you how many times I have wished that I could know what my own daughter is going through. Feel what she feels, you know. But how hard it must be for you. I cannot imagine.

Great job with the ROM, your daughter is lucky to have you. It is a very good sign that she is already moving her arm so much. Keep doing those ROM's- she sounds like she is doing so well! Good luck with Dr. Angeles. I dont know anything of him, but it is good that you are getting her into a bpi specialist so soon.

Hugs,
Veronica
Mom of Olivia, 3, bi-obpi

Her appointment went well. They did xrays. The muscles are pulling her shoulder out. You could see it. He thinks that this will probably correct itself as her muscles improve. We will get an MRI and go from there. He said she is showing some good responses and he doesnt want to do anything until we see what she is doing at 6 months.

Its very confusing but we will get thru it.

"The muscles are pulling her shoulder out" is what you said? Like the shoulder is subluxed? That is what happened to my daughter and that doesn't just "fix itself" over time. An MRI did show this very clearly. I'd suggest getting another opinion from another BPI specialist. I've never heard of the doctor you've taken your daughter to, although that doesn't mean that he isn't good. I am always a fan of second, third, even fourth opinions when it comes to my child's BPI.

Good luck.

Tanya in NY
Amber's Mom, ROBPI, 4 years old

You won't be able to see if the shoulder joint itself is transforming on plain x-rays in a child this young. The joint is almost entirely cartilage, so only an MRI is going to show if the cartilage is changing to remodel the joint.

I don't know about a 2-month-old's shoulder correcting itself after it starts to go bad. Our son had an MRI done at 3 months old (looking for nerve root avulsions) and you can see on that MRI that his shoulder joint is already significantly malformed. It was much worse by the time the malformation was finally diagnosed at 10 months old on another MRI. I guess its possible that if all the muscles recover by 3 or 4 months old then the shoulder might recover itself. I wouldn't wait until 6 months old to find out what is going on in there, though.

Kate

Thanks so much for the input. We have an MRI scheduled for July 5th.

I've noticed she is using her arm quite a bit more in the last 2 weeks. I feel happy about this but I also know that there i still a long road for us to go down.

We are a couple of hours from Orlanda where my in laws live so we plan to go to Dr. Nath's clinic. I definately want several opinions and I want to make the best choice that I can.

Is there a list of questions that I can take to the Dr with me? I want to ask questions and get answers that I can understand. I'm intelligent but sometimes they go over my head. I spent many years dealing with infertility so doing research is nothing new to me but I've found that BPI is very hard to understand if you arent a medical person.

Why are some people getting CT scans and some getting MRI scans? Which one tells what is going on better? Does a regular MRI scan show all that is needed to know or do you need to get a stand up MRI?