new mom of OBPI baby girl who needs help!

[admin]

After reading your definitions, surprisingly I did have the terms down correctly in my head, so yes the therapist is taping her arm for supination and elbow flexion since she is not able to bend her arm on her own.

[Karen Hillyer]

Hi Francine
thanks for clearing up about the helmet, we don't get that many cases of severe torticollis over here, so I guess we're not geared up to dealing with these problems as much as you all are.
Gavin's righted itself with the PT and all the things you did, we did too, so after about 5 months his torticollis had all but disappeared.

I'd just like to take this opportunity to wish everyone here a Merry Christmas and above all, a happy healthy new year!!
Karen

[admin]

Karen,
Just wanted to let you know that flattening of the skull (Plagiocephaly) does not necessarily come from severe torticollis. My daughter had only a slight case of torticollis and still had severe flattening of the skull. Torticollis may also be absent with a case of Plagiocephaly, although it is very rare except when you see it in premature babies or a multiple birth. I was told that in Ella's case it was probably the most comfortable position for her to be in (having her head towards the injured side), but also a slight muscle restriction. We tried different positioning techniques with her for almost 2 months and nothing worked. Stubborn little girl =)
So the helmet had to correct this and she wore the helmet for approx 4 months. I always like to learn different things regaring this injury so since this helmet thing was a part of my daughters injury I thought I would share this info with you. Happy Holiays to you and your family.
Krista

[Karen Hillyer]

Thanks Krista - now that you describe it for the plagiocephaly, I seem to remember reading an article in a magazine many years ago about a boy over here who had to wear something similar - but I could be getting confused with another condition ( at my age confusion is a daily thing LOL) as I thing the boy had had surgery to re-set some of the bone in the skull.
It must have been a very worrying time for your family to deal with that as well as Ella's bpi.
This is one of the excellent things about support groups, no-one needs to feel alone with a problem because there is usually someone out there who has dealt with the same problem already, when Gavin was a baby, we had very little information and no support group, so I never connected his feeding problems/ torticollis/ horners syndrome/balance issues etc with his bpi until he was much older. I felt such a fool for believing all the rubbish the Doctors told me, when really instinctively I KNEW they were all connected - what a wally I was ( do you have that saying in the States? - a wally is an idiot)
thanks for the info Krista, I shall file it away in my head and hopefully be able to retrieve it one day when I need too!
happy holidays
Karen

[francine]

Teresa - are you seeing a brachial plexus specialist? If not - this is one thing that is VERY important. If you don't have one yet - look in the Medical Resources section off the home page - bpi specialists were sent requests to join this list and answer a questionaire.

I think that if I were you, I would question the taping of the arm into flexion and the supination as well. Considering that your baby is 10 weeks old, this taping is not going to help make the biceps fire if it is not innervated (connected to live nerves). That's a matter of the nerve growing into the muscle (which happens at a small rate of one inch per month). But what it might do is shorten the biceps muscle to the point where it may be a huge problem later on. If you add an elbow up to this elbow flexion posture - it is called the Erb's Engram - and is a common posture noted with children who have a bpi. Therapists work hard to help the children get AWAY from this posture so that they can develop a more normal posture with the arm hanging straight down.

I know there is something to say about keeping the affected hand/arm in the child's eye's view because the brain is being reminded visually that there is an arm there.... but usually that is only done for a very short time each day, not for full days/weeks/months. I actually had a splint that Maia wore for about 1 hour a day for two weeks a while after her nerve surgery just to keep her hand in her brain's eye view. Plus I velcroed sensory toys to it, touching her fingers so that if they moved, they would get something back.

A BPI specialist will be able to help you figure this out and come up with a therapy protocol specific for your child. Also - there is a sheet on this site written by Margaret Storment - an OT who was at one time the lead bpi therapist at TCH... it is found in the awareness section http://ubpn.org/awareness/A2002storment.html. In case that's not the right link - go to awareness and go to the resources section.

To be honest with you, sometimes therapists can be overzealous in trying to "correct" everything possible in a child with bpi and sometimes you can be steered down a path that you just shouldn't be on. BPI's are much more complicated than many therapists are able to even comprehend... and that's because their training on it is minimal and they are not bpi specialists or bpi surgeons. My call on the biceps flexion may be wrong - I'm only a mom - but I hope that it gives you pause enough to question it with a specialist.

[francine]

Teresa - please read this link as well

http://ubpn.org/awareness/A2002newparents.html

There it talks about time frames for recovery, etc.

Please stay in touch,
francine

[burdz]

We used to place toys in the car as well as in the crib to get our son to move his head around. Hang toys with suction cups on the window or on the coat hooks in the car.