Update on friend with plagio baby - venting...

September 8, 2003

Well, my friend visited me with her plagio daughter over the weekend. She is now 12 weeks and is heading to the neuro over the next couple of weeks.

Although her plagio does appear just mild to moderate, what concerns me is the neck tilt. It was the first thing I noticed! However, her pediatrician looked at her and said she does NOT have tort. So, my friend insists that she has "full range of motion" and when you hold her up "she doesn't favor one side" and the doctor doesn't think it is, etc... I told her that it's not so much a "favoring" that I see, but a significant "tilt" to the one side.

My sis-in-law (the pediatric PT) also noticed it right away. I asked her privately yesterday, what she thought of her baby's head - she said, "did anyone address the tort?" I said, "that's the problem, the Dr. said there is no tort." So, I know I'm not crazy...

Then my friend called me TWICE yesterday after her 3 hr. drive home. She kept saying, "are you sure? because (dh) and I held her up and we didn't see her tilting at all, she was holding her head straight...and just today she was lying on her back flat and she wasn't even leaning to one side,...etc."

I feel so bad because I know how hard it is to hear this kind of stuff from people, about your child - because I was there too... But I just don't want it to go undiagnosed.

As far as the treatment goes, if she needs it, she has pretty much decided that she will just go to Boston and use whatever treatment device that hospital uses, rather than driving 1 hr. 20 min. each way to CT every two weeks. I have heard good feedback, and some not-so-good feedback about NEMC treatment. Supposedly if they are using STARBands now, that's better.

Sorry to rant - it just really stinks when you know *too much* about something...and you just want to help. My friend looks at her daughter and (a) sees no neck tilt and ( says the flatness is getting better. In my opinion, neither are the case...

ARgh - tough call..

Rhonda

Mom to Collin - DOC Band Grad 2003http://www.collingillespie.com http://www.preciousbambino.com

September 8, 2003

Rhonda-

You might want to mention that some children with torticollis have no range of motion issues, only the tilt. She may not be aware that tort can vary in severity, causes, types and the occassional tilt may seem like no big deal if the range is there. I would pull up some torticollis info for her and ask her to address it with her ped just to rule it out and be on the safe side. Also mention that there are literally hundreds of parents from this board who never spotted a problem until the Doc brought it up at 10 or 11 months old- and conversely, some parents who have HAD to bring it to their Doc's attention, so its not uncommon that tort is being brushed off and overlooked. Remind her that a tilted posture could lead to upper scoliosis if untreated- as its the body's job to protect the brain stem at all costs, a tilted posture would mean the body would shift to compensate, and curving of the spine could ensue. Good luck- your doing all that you can in the way of educating your friend, and at the end of the day you should be proud of that.

nicholas'mom

September 8, 2003

Rhonda:

I think that your concern makes you a good friend. I sure wish

someone would have said something to me. I had the opposite problem,

I noticed 's tilt and misshappen head long before any one else.

I asked nearly everyone I knew what the problem was (even the doctor)

they all said " there is not a problem " . After finally switching

peds, and getting a diagnosis of tort and plagio at 8 months, my

grandma spoke up and said that she thought that was what was wrong

with as my oldest Aunt had surgery to correct tort when she was

6 mnths old. HELLO!!!!!!! I wish someone would have said something

to me earlier.

Maybe your persistance is what your friend needs to begin to question

her own doctor. If her dh doesn't see a problem thought, it will be

much harder to convince her. It took pictures and information galore

to finally get my husband to listen to me.

Randi, mom to , Tort/Plagio, STARbanded since 5-22-03

September 8, 2003