United Brachial Plexus Network, Inc.

We just saw Dr Water's in Boston this week and it all went well. He doesnt see primary surgery in Ella's future, but wants to follow her progress. We will meet back in a month. He did think that the flattening on the back side of her head was severe so he referred me to Yale Childrens Hospital (closer to home) to get her fitted for a molding helmet. Has anyone ever used one of these? I have never seen one before. We will have the fitting done next week.

Hi, Krista. Glad to hear your news about no primary. That's great! Hopefully, she will continue to progress on target. Sorry though about the helmet and I don't have any answers for you. What kind of dr. did he refer you to get fitted? Just curious. Email me when you have a chance. I'd love to hear more about your visit with Dr. Waters and any fun you had in Boston. We're home now (there's no place like home!). TTYL. -Tina

Krista,
I haven't used a molding Helmet for my son but it was considered. I think I saw one on a child while I was at the Children's hospital near home. It looked a lot like a small bike helmet. Please post after you go because I am intrested in knowing what they are like too. I don't think that it is in the plan for Ian at this point but it would be nice to know just in case!
Always,
Kristie

HI Krista,
It was thought that TJ would need one as well, but we started neck stretches and different positioning, and also tried more sitting up mechanisms (jolly jumper, exersaucer etc) This seemed to help- although TJ's head is not completely symmetrical, we were referred to Dr Mark Proctor at Boston Childrens, we had to go in and have TJ measured a few times to see how bad the difference was- we were told they want the difference to me about 10-15 mm in order for the helmet use. TJ started at 14mm the first visit and the 2nd visit was down to 9mm. The helmet is molded to the head, I've seen it on a few kids, now they're even making them in colors, it reminds me of a football helmet without the face mask, it's a soft plastic and I'm pretty sure they aren't removeable- the kids where them for a few months from my understanding, unless it's a severe case of torticollis then sometimes surgery can be required. You'll have to forgive me, it's been a long time since we looked into this, hopefully there have been more advancements in the treatment of torticollis since then- let us know what you find out, alot of the BPI babies have torticollis and I'm sure your newer information would be very helpful.

Jamie, Dr Waters said that he thinks Ellas is 10mm. He was going just by looking, but he said that it looked severe enough to have her checked out at Yale and get measured. She doesnt have torticollis though. She favors sleeping on the flat spot now b/c it is the most comfy way to place her head down I guess. That is what the DR thinks. Our PT said that her neck has full range of motion, but she doesnt look to the uninjured side as much as the injured side. I am keeping an eye on it. Thanks for the info.
Krista

Hi Paula,
Ella has a lot more movement now than even two weeks ago. I still do not know the fancy terms of the movements, but she could move everything now, just obviously not in full range of motion. She has active bicep movement, but cannot turn the hand palm facing her. She is only 2 1/2 months old so that is more common at this age anyway, although she still has a bit of internal rotation. Dr Waters said that the external rotation is one of the very last things to come back. Well, I hope I answered your question a little bit...I tried =) !! You could email me more if you would like.
Krista