Guest guest Posted August 31, 2010 Report Share Posted August 31, 2010 I would say just keep an eye on it... you can always go back to CT and get their opinion if you feel it gets to a point where intervention might be warrented. They may even do a photo study to put your mind at ease... Jen Mom to Luli - 4 yrs old Torticollis, Plagio, Syringomyelia the big R... Regression, that is!!! We are done with the band, but still battling tort. My daughter sleeps on her stomach, but always keeps her head to one side. For the first two weeks, I would check her periodically and if she was in a deep sleep, I would reposition her. Yesterday, after her bath..when her hair was wet and I could really study the shape of her head...I noticed, clear as day, the back of her head on the left side was beginning to protrude...and her forehead on the right was as well. It is not a lot, by any means...but it's making me nervous. I began checking on her more frequently, and discovered that she's putting herself back into the position that compounds the plagio as soon as I leave. I have no clue what to do- I can't keep disturbing her sleep to reposition her. I'm already checking on/repositioning her for the first 3 hours at night. Short of putting her in a bubble until her soft spot closes...I have no clue what to do. We will definitely be more aggressive with the PT (which is becoming more and more difficult as she is entering an age where she is aware of what's going on and does not like it). She was in the DOC band for 6 weeks and is 6 months old. I would love any and all advice...or stories from those who have been through this. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2010 Report Share Posted September 1, 2010 I hear you! My son's tort has been very resistant to treatment, and I've seen some regression already even though he's only been out of his helmet a couple weeks and he's 13 months old. Apparently I'm in the unlucky minority because it's unusual for a baby my son's age to regress. Oh well, life isn't always fair! We're probably going to be getting him a TOT collar (Google it and ask your PT). Your baby's the perfect age for it since it's ideal for babies to start when they sit well but don't walk yet. It's not worn 23 hours a day like the helmet, just when the baby is awake, sitting up, and under close supervision (not in a car seat). My son's PT says he's seen very quick improvement in some babies using it, and very slow in others, but it always seems to work in his experience. He especially recommends it for children who have become old/ strong enough to really fight the stretching. You still have to do the stretches, but when they don't go well, you at least know the collar is helping, too. It's very reasonably priced at about $60 and can be purchased online without a prescription or possibly through your PT. Make sure your PT knows how to fit it though, or you'll have to find someone who does. Treating torticollis can reduce regression and facial asymmetry, so this might be just the solution. Of course, at 6 months you can always get another helmet if you need to, though I understand you're trying to avoid that. Good luck, and keep us posted. > > I would say just keep an eye on it... you can always go back to CT and get their opinion if you feel it gets to a point where intervention might be warrented. They may even do a photo study to put your mind at ease... > > > Jen > Mom to Luli - 4 yrs old > Torticollis, Plagio, Syringomyelia > > > > the big R... > > > > > > Regression, that is!!! > > We are done with the band, but still battling tort. My daughter sleeps on her stomach, but always keeps her head to one side. For the first two weeks, I would check her periodically and if she was in a deep sleep, I would reposition her. Yesterday, after her bath..when her hair was wet and I could really study the shape of her head...I noticed, clear as day, the back of her head on the left side was beginning to protrude...and her forehead on the right was as well. It is not a lot, by any means...but it's making me nervous. I began checking on her more frequently, and discovered that she's putting herself back into the position that compounds the plagio as soon as I leave. I have no clue what to do- I can't keep disturbing her sleep to reposition her. I'm already checking on/repositioning her for the first 3 hours at night. Short of putting her in a bubble until her soft spot closes...I have no clue what to do. We will definitely be more aggressive with the PT (which is becoming more and more difficult as she is entering an age where she is aware of what's going on and does not like it). She was in the DOC band for 6 weeks and is 6 months old. I would love any and all advice...or stories from those who have been through this. > > Thanks! > Quote Link to comment Share on other sites More sharing options...
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