Re: Fwd: Re: Madison 5mths. old - Please help in Pennsylvania

[Guest guest]

Hi Stacey and ,

Perhaps you could call some local area children's hospitals to get some help on this. My son was dx with tort at 2 months and aside from that dx, I had to do alot of digging to find therapy. A lot of hospitals, not just a childrens hospital, have a pediatric physical therapy center, and I'm sure they could refer you to a pediatric doc that knows about torticollis- or send you to a nuero that they frequently deal with. Or, another route, you could call a Cranial Tech near your area and find out which Doctors they have dealt with tort if you are close enough to one. In the meantime, I am going to post a few links on how to work with tort (although you really need to see a specialist before starting these agressive stretches to make sure its only muscular, some tort may be caused by a fusion of the spine or bony anomolies). In any case, it would help to reposition off that flat spot. I will attach a link also that talks in detail about tort and the support group at torticolliskids is great for tips and advice. My son had the same ear misalignment and we opted for the DOC band and achieved about 95% correction. It's MOST important to get a move on the tort now, this is essentially what is causing the plagio. It could be that the child has no range of motion, or cannot look to the left or right fully because of the tight muscle, so they give up and turn towards the side that's allowing them too. This causes that flat spot as they are "rubbing" that area down really. It was extremely hard for us to reposition, when tort is severe, they spring back quickly to that favored spot. The fact that Madison is 5 months old, is a great time for thinking about getting the DOC band or another helmet device, but again, the tort needs to start getting worked out with therapy asap- if its muscular tort, you have to stretch that muscle out several times a day with therapy exercises. Tort can affect the spine, facial features, milestone delay- they have a hard time not pulling up that entire side of the body, which could cause scoliosis, problems with balance, etc. (Don't worry, some kids have no problem with this, my son was ahead of schedule on every milestone, every child is different). Start with checking local hospitals for a ped referral, or call all local pediatric neurologists to get the x-ray or MRI going. From that point, you'll need to consult with a pt- you can even look into a program called Early Intervention that will provide therapy for free if you qualify in your state. Good luck and please email if I can help you in anyway.

' Mom

Torticollis stretches/holds

DOC band- Cranial Tech

Torticollis Info

[Guest guest]

Hi!!

I'm from Pennyslvania. Not sure if I can help though as I am on the western side of the state. I am about 1 hour east of Pittsburgh. My son received his STARband from Union Orthotics and Prosthetics in Pittsburgh. His neurosurgeon is from Children's Hospital in Pittburgh. He receives PT from Neurological Therapy Specialists, Inc. of Greensburg. Our pediatrician would most certainly be out of the question because of the distance and besides he failed to recognize the tort/plagio on my son. If you would like any other information on any of these places, feel free to email me. My address is aober@... . Good-luck!!

AnnMarie & (14 mos.)

STAR grad

Tort resolved (?)