new mom of OBPI baby girl who needs help!

[admin]

My 10 week old baby has OBPI in her right arm and has recovered some movement. But my main concern, along with the neurologist, is her head and neck. The tendons in her neck have tightened and thus shortened on the right side causing her head to cock to the right. Since she can't look to the left, her head is now becoming misshaped and they have talked about having her wear a helmet. Have any of you experienced this? Is this normal?

[Mommyanders]

I hear this is a very common side effect. My OT had us take Caleb's head and stretch it away from his BPI arm in order to avoid this. It's called Torticollis, I believe. We ended up not having any problems, but I know it's a very common side effect. If you have any more questions about BPI at all or would like some support please fill free to e-mail me.

Hugs,

Kari
kari@anderson-clan.org
http://calebsjourney.anderson-clan.org

[Karen Hillyer]

Teresa
This is a VERY common associated condition with a bpi
the sympathetic nerves which help the baby bring it's head to midline have been affected.
It is usually a temporary condition and for most children (my own son included) physiotherapy is all that is needed to help correct it.
Some helpful things we found were to ALWAYS gently turn the babys head to the correct position when giving her attention.
Another idea is to get a large picture of another babys face ( we used one off the front of Mother & Baby magazine) and place it in your baby's crib, baby's have a natural tendancy to look at faces so a nice clear large picture taped to the inside of the crib will encourage your baby to turn her head to the other side.
When you are carrying out your ROM exercises, which you should have been given by your physiotherapist or BPI specialist, you should also perform physio on the baby's head to encourage the head to face the front.
When you are feeding her try and feed her so that she has toface the opposite way her head is facing to encourage movement.
I have never heard of a baby with torticollis wearing a helmet, but I do live in the UK - so maybe it's more common in the states. The only treatment for very severe torticollis other than PT, that I have ever heard of is Botox injections - but that was in an adult case.
I hope this helps a little, what did your daughters bpi specialist say about her injury? are they evaluating her for surgery or just pt?
Karen

[francine]

Hi Teresa - what you are talking about is torticollis. I do have a picture of the helmet for the cranial issues here:

http://www.injurednewborn.com/maia/splints.html (toward the bottom)

Torticollis is something that is worked out with a PT. This is what we were taught for Maia's torticollis. The thing you have to do is get the child to move the head in the other direction to stetch out the muscles. So place the crib in another direction and put something that will get their attention on that side so that they want to look at it. I bought this Fisher Price light and sound box - Maia was forced to look at it because it REALLY got her attention. We put music on that side... we put a mirror on that side... and her therapists worked on this with us during sessions as well. I haven't heard of this being a major problem as long as work is done to reverse it early on - it took Maia a few months to work it all out....and every so often we have to repeat the neck exercises as a reminder...

Wanted to let you know that most parents with babies are posting on the General Board so join us there ok?

Also wanted to let you know that this site is filled with great information for you to read.... http://ubpn.org/awareness - click on the resources section... also - on the home page - click on Information for New Parents... and also on the home page is the Medical Resources which is a listing of bpi specialists who have agreed to list on this site and fill out a questionaire.

We're here to support you and answer questions and help you through tough times - I'm really sorry that this happened to your little one but happy that you found us here!

Hope your holidays are great!
-francine

[francine]

Karen -the helmet is because if the baby has slept on one position since birth (because he/she is not turning the head the other way) then the head becomes misshapen - so they get the child a custom made helmet that slowly guides the cranial bones back to a normalized position. It's not specific to torticollis but it can be an outcome of torticollis just because the child is staying in the same position for too long a time period.

[admin]

Wow! Thanks for all the great support and responses you all. This was my first time posting on here. I have been reading everyone else's issues on here for several weeks now and everyone seems so nice. Anyway, yes I have been taking my daughter, Mackenzie, to a therapist and she has told us how we need to encourage her to look to the left and she has also cut her head shape into a piece of foam for us to put in her swing and carseat to keep her head aligned. She is looking to the left more than she use to but her head is still really misshaped. Thanks for telling me about that site where I can order splints etc. I've also received several pamplets in the mail from Peggy Ferguson and you Karen. They've been very helpful, but I just didn't find anything in there about helmets. Now on to another question, our therapist is taping Mackenzie's arm every week to help with supination and elbow flextion, do we need to ask her to move onto a splint?

[admin]

My daughter wore the helmet for this and she is pictured on Francines site wearing it. She has a LOBPI and did have torticollis. I will email you.
Krista

[admin]

Thank you everyone for all of your suggestions. IT was my first time writing in and you all were very helpful. I have been taking Mackenzie to a physical therapist who has already shown us how to stretch her neck muscles and to practice getting her to look to the left. The therapist has also cut Mackenzie's head shape into a large piece of foam for us to put unto her car seat and swing to keep her head looking straight. But her head is still getting misshaped. I also have another question. The therapist is taping Mackenzie's arm into supination and elbow flextion, but should I ask for a splint? Do those work better? Thanks!

[admin]

I saw your daughter on that website. What a cutie. How long did she wear it?

[francine]

Teresa,

about supination and elbow flexion....

supination doesn't come about until about 11 months (in the normal developmental chart) so you have a ways to go for that...

as far as elbow flexion is concerned -

let's go through some movements - if you put your arm out in front of you (like in a monster movie)-

palms facing down would be pronation

palms facing up would be supination

bring the hand up to the chest (a biceps curl) that would be elbow flexion

and bringing the arm back out would be elbow extension.

Is your daughter being taped for elbow flexion or elbow extension? I guess I need to know this before I can further answer your post.

-francine