DS's Torticollis

robynlesley · February 2010

I'm so upset. I thought we were almost done with physical therapy (after 4.5 months) and that Aaron's Torticollis was getting much better. But, apparently, he has shown regression and needs to continue going to PT once a week.

He has a 20 visit per calendar year (per condition) cap. Thus far, in 2010, he's gone 5 times. I have a knot in my stomach re: this.

And the physical therapist he's been seeing since the beginning is leaving the facility (only one in my ins. plan that does PT for babies) and we'll be seeing a new one. I'm sure she's good too, but I hate this.

Plus he's supposed to get his 2nd helmet tomorrow and the forecast is for snow?and a possible blizzard.

Freaking out a little bit here.

SFAug07 · February 2010

So sorry about this. I don't have any advice but hugs and good thoughts.

On the positive, Aaron is so adorable in his tub!!! I open your posts just to look at him, it makes me smile.

Peppernut · February 2010

Awwww, yuck!

I wish I had something helpful to offer, but all I have is loads of sympathy! *hugs*

busybea · February 2010

oh no Robyn, i'm so sorry you're going through this. Is the specialist you're presently seeing going to a different office you can go to or can she recommend another place/person ? It must be tough, prayers and good thoughts going out to you & LO right now....

robynlesley · February 2010

Bea, unfortunately there isn't any other place to go to. At least not covered by my insurance. He's going to a Kessler facility (Kessler is highly respected... Christopher Reeve went to their main loc. after he was paralyzed) and I'm not worried about the quality of his care.

I'm more upset that he's regressing. As much as I post about his flat head and helmet, the torticollis is more concerning. I'm thinking after his first session with the new therapist that I should also make an appointment to discuss this with his pediatrician.

For now, I'm just going to work on his stretches and tummy time and whatever I can do to fix his tilt. I'm glad he has full range of motion, however. So it's not as bad as it was four months ago.

KristelRobin · February 2010

Robyn, I'm sorry to hear that Aaron has regressed. Hopefully the new PT will be great and he'll improve quickly. Left Hug

Pesky · February 2010

stever · February 2010

Oh no! I'm so sad about Aaron's torticolis, and worried about the blizzard. And the deal with the insurance blows! Surely they should cover as many visits are necessary. Grrrr....

I'm so sorry Robyn!

Left Hug and more

chiromommyMichelle · February 2010

Robyn:

A couple thoughts I had while reading your update, particularly on the financial/insurance end...if Aaron is being treated at a large facility, they may have the budget to reduce his fee for the non covered visits. When you are using your insurance, everybody has to follow the rules set by the insurance co, but when you are cash, they can get creative with fees and payment arrangements. A smaller facility may be able to let you prepay for a certain number of visits and get a discount, and either of them may even take 'scholarship' cases, as we do in our chiro office. PT is so expensive per visit that it can be cost prohibitive to continue care after your yearly benefit runs out, and I'm sure that they have found ways to help patients receive appropriate care at a reduced cost.

fiazo · February 2010

Oh, so sorry. Going to Physical Therapy is a job in itself.

Moiselle · February 2010

That sucks, Robyn. Did they suggest doing more therapy at home? My GF told me their friend lets their son watch tv sideways in a chair in order to help w his torticolis.

robynlesley · February 2010

I'm going to ask about all other types of therapy I can do at home next week at Aaron's appointment.

mama.bear · February 2010

robynlesley:
I'm going to ask about all other types of therapy I can do at home next week at Aaron's appointment.

I think this is a great idea, Robyn.

You are such a great Mommy.

pahokie · February 2010

I would suggest you speak to the therapist and let her know your concerns about running out of covered visits. Maybe you can do some more work with Aaron at home and go two weeks between visits to make the coverage last longer? I second Bea's rec to ask about reduced fees or financial assistance once insurance runs out.

GL with the snow and getting the new helmet.

BrideBuddies · February 2010

pahokie:

I would suggest you speak to the therapist and let her know your concerns about running out of covered visits. Maybe you can do some more work with Aaron at home and go two weeks between visits to make the coverage last longer?

I'll say Ditto to this. Before baby, I was going to PT to try and strengthen my back muscles. Insurance would only cover about 5 visits (stupid!) so the therapist gave me a regiment to do the exercises on my own. That way I could spread out the visits more.

Daisiesinmygarden · February 2010

I'm sorry. Left Hug

robynlesley · February 2010

We actually were going every 2 weeks but need to go back to 1x per week until his muscle is looser/the tilt is better. I posted about this on the Torticollis group on Yahoo and a few people told me their kids had similar regressions and aggressive stretching and PT helped.

KD288 · February 2010

Robin, I am so sorry he is regressing. I hate insurance with a passion! I hope the new therapist and your pedi can offer more advice.

Sorry about the snow and the helmet. But at least your safe.

&& · February 2010

Ugh Robyn. That totally sucks- all of it. (sorry I am so late to the post) I hope that the new PT is just as good as the other one and can pick right up where he left off. I really hope that they can give you some exercises to do at home to help Aaron stop regressing. Insurance companies are so stupid. And you know if you didn't change the appt to get a new helmet then we would have had a MAJOR blizzard or something.... ((hugs))

DS's Torticollis

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