A lesson learned and a few questions

About a month ago, someone posted about torticollis and being your child's advocate-the post really struck me and I went to my dr that month and told them it was time to start PT-they agreed b/c her left side of her face is fuller, the back is flatter on the left and her ears are misaligned.
Anyway-we had a PT eval and it was so heart wrenching to hear and watch Ashley scream when they stretched her-I was crying, my mother had to leave the room with Brianna b/c she couldn't stand to hear it either. The PT said I needed help right away and that she would prefer if torticollis babies came to her at 1 month-this upset me so much b/c since day 1 we wanted to get Ashley help and they kept telling us to wait-it is so hard not blame yourself for this-if only the 1st 3 months were not such a blur-maybe I could have made a better decisions? I really like my dr's but I learned my lesson that I need to be my child's advocate and should have insisted that we move forward. The PT also said to wait a month to see how things go and then talk about a helmet.
My question is has anyone had an experience with the plagio correcting itself through PT and no helmet? When did most of you start PT? Is almost 5 months starting late or average? Will Ashley scream at each PT appt? I need to prep DH for this one! Also any advice or questions I should be asking before we go to our 1st PT treatment on Thursday?
Thanks for the help!

 

I really had to push to get my son seen by our state's Birth to 3 program around 1 mo old. At first, they sent out Occupational Therapy. She then said he needed to be seen by Physical Therapy (which I had originally requested) so I think he got seen by them around 2 months; maybe a little earlier.

My son's tort wasn't THAT bad, so ours was easily corrected. He was in PT until he was 4 mos old & it was every other week. We did stretches at home daily & daycare also did stretches with him. He did cry sometimes with his stretches, but it wasn't so much pain as much as not enjoying being held down. We sang a song (that we made up) during each stretch that got him used to them & after a while, he almost expected them (we did them w/each diaper change). Hopefully your little one will get used to the stretches & not cry too hard. Keep in mind, a lot of it is having someone near their face, which is HUGE to them at that age. We kinda found ways to alter our stretches to avoid having our hands near my DS face.

We also saw a Pediatric Neurologist to get things started for a helmet around 1 mo old. However, he felt that the PT & positioning techniques should help his plagio, which it did. His head is not perfect, but as he starts sitting better & continues to roll around more, I think it'll still improve. We've decided not to go ahead with the helmet due to the dramatic improvement in his head shape after his PT & after we were quite anal about him laying his head certain ways (we used positioners, placing toys on other sides, feeding him with opposite hand, etc).

GL with your little girl....hopefully she does well with PT & you can avoid the helmet!

 

Gosh, please dont blame yourself.

My son had tort but I never would have noticed it as soon as I did if it were not for my nephew having it the year prior to my boys being born. My son began pt at 8 weeks and I did bring him to get evaluated for a helmet at 4 months because even though we were going to pt, I was not happy with the progress of his plagio and wanted to get the helmet for him at the right time if that is what he needed. It ended up that the measurments did not justify a helmet and the plagio eventually corrected on its own with the help of pt and excercises at home.

My sisters son was diagnosed with tort at 5 months. Her ped continued to miss this diagnoses and she took him somewhere else where he was finally diagnosed. Anyways, he did get a helmet shortly after his diagnoses of tort. because the plagio was more severe by then. If he was diagnosed sooner, he probably would not have needed a helmet. Noone had told my sister about more tummy time to fix the problem and all the different positioning techniques that could be done at home and the fact that he was not getting pt for his tort.


has anyone had an experience with the plagio correcting itself through PT and no helmet? So for my son yes but my nephew, no.

When did most of you start PT? Is almost 5 months starting late or average? I dont know what the average is but my nephew who began at 5 months had his tort corrected shortly after he turned a year. I think the perfect time to get a helmet is either 4-5 months.


Will Ashley scream at each PT appt? Around 5 months, my son cried at every session but I got so used to it that it did not bother me. Sometimes more then other times.


Also any advice or questions I should be asking before we go to our 1st PT treatment on Thursday?

From 8 weeks until about 5 months, my son went once a week. I thought there should be more progress so we increased therapy to two times a week. My nephew also went two times a week. Good luck and post questions here anytime you have them. Oh, and the average time for pt for toricollis is up until they begin to walk. So after one year is when many patients are released. This is because during different milestones (crawling, walking) the torticollis can be seen again.

 

That sucks! But thank you for bringing that up! I am going to ask about taking my little 'flathead' to a PT at their 4mo appt next week.

I hope Ashley's tort can be corrected with no helmet!! Good luck!

 

I'm not sure that I can address your questions appropriately as DS only had 2 sessions of PT before they fitted him for a helmet. His tort. resolved itself by positioning that we started early on. He had a bit of a tilt after he started wearing the helmet so we went back to PT and I really didn't feel like it wasn't something that warranted PT so we stopped going all together. The tilt is gone now but I must say that in our 2 experiences, never once did my DS cry. Although, they didn't really stretch him a lot where he would feel pain.

My two comments regarding helmets (in case you do eventually have to resort to a helmet).

**Find a good specialist. I don't necessarily think ours is bad, but we go about once or twice a week due to irritation from the helmet. It wears on his face and his scalp so much so that it pusses and scabs over. They actually had to remove an entire sideburn because the side of his face continuously broke out in a rash from it. The helmet is now loose and moves around on his head. I really am unsure if it's serving its purpose but I sure hope so.

**Check with your insurance company and ask the specialist to contact them to see what they cover! I had the specialist call first and the insurance company gave them a out of pocket $$ for me. When the specialist billed my insurance company, it came back as denied. We're now battling back and forth trying to get them to pay for it. Helmets and the visits are not cheap so make sure you cover your bases first. Ultimately, we would have done it regardless of the price, but it should be something that is covered and I'd rather it be than not.

Good luck to you! I really hope PT works out and that you don't have to resort to the helmet with your DD. Whatever you do, don't beat yourself up about not pushing the topic earlier. Do what's best for your DD and keep her best interests in mind... just keeping looking towards the future!

BTW... We started DS on PT at about 5 months and the helmet at about 6 months... he's now 8 months and the shape of his head is starting to get a little rounder. Keep in mind though that he only wears it about 20 hours on a good day.

 

You poor thing...I know this is difficult for you and your little ones!

I don't know is this is helpful to you or not, but my son went straight into a helmet (DOC Band) at about 6 months). It was completely painless and throughout the process (fitting, weekly appointments, wearing it for 23 hours a day), I don't think he shed a single tear.

I offer this info to you only as a way of comforting you in case you have to go the helmet route, which you may never have to do! Lots of moms on this board were able to avoid the helmet completely!

Good luck to you!

 

Hang in there!

Just to add my 2 cents...

My DS did not have tort, and we never did PT, but it still took a lot to go the helmet route. He got it (STAR band) at 9 months and it hasn't bothered him one bit, other than getting awfully sweaty. It honestly is not nearly as difficult as I anticipated, and in one month his measurement has went from a 17 to a 14. We feel we can see some difference already, and feel good knowing it is getting resolved.

Good luck to you!

 

My DD didn't start PT until she was 3 months old. I'd had to push and push as well to get her to a specialist. That said, her Tort was moderate to severe but only mild plagio. We've been doing therapy for 5 months now , and are just about to drop off to apts every other week. We chose not to do the band or helmet, as once her hair grows in the plagio won't be visible. (her ears are missaligned, but really I think we notice these things more b/c we're their mom. My sister said she wouldn't have even noticed if I didn't say anything.)

During stretches Addie does cry. It's not comfortable. But I do my best to make it a game, or sing songs and talk in silly voices to distract her. It's hard to see your child in pain during a stretch and know that you are the one causing her discomfort, even though it is for her best interest. You'll get thru it though. you both will>

please PM me if you ever need support or to vent

 

At 2 weeks my PED gave me some stretches to do with her and siad if it was not better by 2 months we would go to PT. At 2 months she was improving so we kept stretching her. Now at 7 months and with a new PED and insurance company we are going to see a PT for the first time. The good news is we are seeing the PT to clear her of the Tort as her neck is normal and she has full range of motion and such.

Her head shape is not perfect, but it is not bad either. No one can see unless they look closely.

So yes, it can improve without a helmet.

 

Thanks for all the info and support. I am having a hard time not blaming myself for all of this-the mommy guilt that I know never goes away-but at least we are heading in the right direction now. I agree that as a parent you notice every little thing on your child and my family has said they wouldn't notice if I didn't point out, although her one fuller cheek is becoming more noticeable. We start PT tomorrow and then we will have more answers and go from there. I'm glad to hear that the head shape can improve without a helmet and that those who had them weren't affected by it. I just don't want her sweet peronality to change-she freaks when we put a hat on her, I can't imagine what the helmet would do-YIKES!
Thanks again and I will keep you all posted!

 

We did the stretching exercises at home beginning as soon as the torticollis was noticed (2 months) and because we were making good progress, we never went to official PT. I tried to make it a cuddling and stretching combination session so they didn't get so worked up. We had full correction of the tort by 6 months but their heads were still very flat and the plastic surgeon who evaluated them strongly recommended helmets. He said that there would be some improvement over time but since there was facial involvement, it may be noticeable later.

My guys began the helmet process at 6 months and had them on by 7 months (there was time involved with getting a CT scan, having them fitted, getting the helmets made, and then another fitting when they finally get them on). They wore them 23 hours a day until 14 months when they learned to remove them and would no longer leave them on. Trevor has almost 100% correction (we only left his helmet on for the last month because Trent needed his) and Trent got about 80% correction but I've seen improvement since then and I think he'll do well long-term.

I wish we had pushed to helmet them earlier. It goes much more quickly at 4 months than 6 although our doctor said he will helmet as late as 12 months.

FWIW, T&T totally didn't care about the fitting process and adjusted to wearing the helmets within minutes. DH had a much harder time with it than they did. I went to the appointments without him because I knew they'd sense his apprehension.

ETA: the orthotist told me they see LOTS of twins for this because the tight confines prior to birth predispose them to the problem more so than a singleton. She also said it happens often that the parents do everything right and their child still needs the help and I shouldn't feel any guilt over it -- it's no different than a kid getting braces on their teeth.

Good luck!