Torticollis

PhillyGal34 · October 2012

We just went to the therapy eval for my son's flat spot... turns out he has minor torticollis. Does anyone have experience for this? they said it is very mild but they are still saying we have to go two times a week for a few weeks. Are they just trying to bill our insurance for money? When they went through the range of motion testing it was only slightly reduced... so I'm not sure why they need so many visits??? thoughts?

jennbent · October 2012

My DS has a flat spot and minor torticollis as well...but we're only going right now about every 3-4 weeks.

Honestly, I tend to be really suspicious too - always wondering if are they trying to bill our insurance for more money. I think preemies keep these therapists in business! lol

Sorry I don't have much more info than that for you since we literally just started therapy this week, but yes, I agree that does sound like a lot. Just my humble opinion though - I'm sure others will have more enlightening things to say.

Missa_g · October 2012

I think they're likely being proactive. Better to overdo the therapy and make sure he's better vs the alternatives. We have been receiving PT for torticollis since the boys came home nearly five months ago. S's improved and his head is nice and round. J's torticollis has worsened which has caused the flat spot to worsen which is causing plagiocephaly. He will have to start wearing a helmet for it soon. In the beginning we were told twice a month PT would be sufficient. Despite us doing the stretches and massages it wasn't. I wish they had been more proactive.

jennbent · October 2012

Missa_g:
I think they're likely being proactive. Better to overdo the therapy and make sure he's better vs the alternatives. We have been receiving PT for torticollis since the boys came home nearly five months ago. S's improved and his head is nice and round. J's torticollis has worsened which has caused the flat spot to worsen which is causing plagiocephaly. He will have to start wearing a helmet for it soon. In the beginning we were told twice a month PT would be sufficient. Despite us doing the stretches and massages it wasn't. I wish they had been more proactive.

See, that is definitely more enlightening than my response. YIKES! After hearing that, I say do the therapy as often as they say!!!

PhillyGal34 · October 2012

Thanks guys... Missa I really appreciate your perspective. I need to realize that even if it is overboard I'd rather go overboard now than let it go without treatment (not that you did... I don't mean that, I mean if I didn't do the therapy now)... I appreciate your responses!

AlwaysSunny925 · October 2012

My Ryan has torticollis for which he receives PT. It has dramatically improved, but 8 months later he still has it. Our PT says the tort is what's preventing him from being able to roll and do other things. I would get him the PT they suggest.

PhillyGal34 · October 2012

BostonKisses2:
We went through the exact same thing when Judith was right around the age of your DS. It's not that they're trying to bill your insurance for more money - torticollis can become a serious problem if they don't treat it, and it can take much longer to correct. Going for PT and learning some basic stretches will help loosen your LO's muscles so they can get the proper range of motion they should have.
Did they refer you to EI? We got Judith's PT through EI, and it was a really good experience. Since we got her in for torticollis, we were able to keep going to get her core muscles strengthened and eventually get her walking. She was in PT for a year, and didn't qualify after that. EI in PA is pretty good, so if you can get in I would try to do that vs. private so you can save some money.

thanks... I was concerned because when I mentioned that I thought he was getting a flat spot to the pedi they said they would send us for an eval but that he wouldn't likely have to go back because they'd just give us a few tips... then it turned in to 2 times a week! So I was confused. I am going to do whatever they tell us, his health isn't a question but I was just wondering.

They did mention EI... I am going to call and see. She made it sound like they just come to the house and check up and aren't as hands on though... is that wrong?

PhillyGal34 · October 2012

so far they said he is on track with everything except this... at least based on the eval today and the pedi evals... would this diagnosis be enough to get him to qualify for services? If so, I'd like him to get whatever he can get!

PhillyGal34 · October 2012

BostonKisses2:
PhillyGal34:
so far they said he is on track with everything except this... at least based on the eval today and the pedi evals... would this diagnosis be enough to get him to qualify for services? If so, I'd like him to get whatever he can get!
It's definitely worth a shot! I know our NICU PT pushed to get Judith services since she caught it at one of our developmental clinic appointments, so maybe your pedi can help give them a boost.

Thanks so much! and in case I didn't say it lately Judith is ADORABLE!!!!!

kelkel09 · October 2012

my DD was diagnosed with mild torticollis when she was about 6 or 7 months old. Someone had told me that with the diagnosis they should automatically qualify for services. We had EI come do the evaluation, but she didn't end up being qualified because they said it wasn't impacting her development. As she has continued to develop and get stronger her torticollis has cleared up on it's own and now her neck is completely straight!

DrRx · October 2012

Because of Adalyn's birth weight and GA, she automatically qualified for EI. We've been getting it since we came home, going from once a month to once a week a few month ago when she started doing more. EI is different in different states, but for us it has been a great experience.

I definitely agree with the others about being really proactive if you can. You may find that you may go down to once a week sessions once you start seeing some improvement. GL and I hope that they can resolve it soon.

PhillyGal34 · October 2012

Thanks everyone! I'm going to give ei a call and see!

Torticollis

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