Update - Torticollis PT

Last time I updated was about a month ago after DD's first PT home visit. http://forum.baby-gaga.com/about2277003.html

Since then she has been doing well and we have been exercising with her as much as possible. Her therapist is very optimistic. She still needs a little work with arm and belly strength as she tends to ignore her right side. DD is almost sitting up on her own now... so she's getting somewhere. And she also looks to her right more often now. Next visit her PT wants to try something called Kinesiotape to help with muscle awareness and sensory and to help align parts of her body.

The topic about a helmet came up again and her PT is starting to think she may not need one. She says she already sees improvement with her head rounding out on its own. I honestly don't see a change, but then again it would be hard to see change when I see DD every moment of every day. So we decided to start taking photographs to view the top of her head once a week or so and then compare. I'm just worried that if we continue to go this route that if we wait too long it may be too late to fix it. She's 7 months now and I honestly don't want to have to wait any longer than needed.

Here's the first set of photos we took today. To me it looks the same as it did when we started her PT.


The photos don't really show the flatness of her head on her left... it's hard to see since the flatness is a bit lower in the back.. but the bulge on the right of her head is obvious... and that's what is starting to worry me. She has that bulge in the back right and another small bulge on the left on her forehead.

I really don't want to miss out on the chance for a helmet to fix something that is irreversible later when she's older. I guess at her next PT I will make sure her hair is wet so her PT can see what I see.

We thought for a while my LO may have Torticollis. Thankfully with a few visits to the office and they did some streching with her (She hated it) the tilt she had went away..i still keep an eye out for it..but she seems to be doing better, Lots of prayers for you and your LO.

Dear Raych,
My son also has torticollis and plagiocephaly. He wasn't diagnosed by our pediatrician until about 6 months and then saw a neurosurgeon who did some imaging (ultrasound & MRI) because his head circumference is also in the 99th percentile. We got him fitted for a helmet at 7 months because he was measured with the scan they do at the orthotics place and had a severe score of 13.2 (10 is considered severe. He had back right flattening and bossing (bulging) in the right forehead. His head was shaped like a parallelogram. He's been in the helmet for about 3.5 months and we see a great difference in his head shape. His score is down to somewhere in the 8-9 range and the back of his head has completely rounded out. There is minimal bossing in the forehead.

I'm really glad that we got him into the helmet, but will never know if his head would have corrected itself when he started sitting, crawling, etc. The helmets are expensive and our insurance only covered a portion of it.

DS is also getting weekly PT from our state early intervention program. I'm going to mention the kinesiotape to our PT because I still see some asymetry in how our DS sits, stands, crawls, and lays. Our DS also tries to avoid using his right side, so we are constantly working with him to make sure he uses it. He's pulling to stand and when helped he will crawl normally, but you have to put your hand under his right arm pit to make him do it. Otherwise, he army crawls on his left hand and right elbow and does not use his right leg to push at all.

This is definitely turning out to be quite a journey all starting with a tight neck muscle. Every time DS makes a little progress, we notice some other way that he is compensating and not using all of his muscles equally. I am extremely proud of the strides he is making, but I will not give up on doing anything I can to make sure he reaches all of his developmental milestones.

In addition to the tort and plagio, DS is being monitored by his neurosurgeon because there is a prominence of extra-axial fluid around his brain, so they are concerned about possible hydrocephalus. The neurosurgeon said that often it resolves itself, but there is always the possibility of him needing a shunt. He's a happy boy and I'm praying that it does resolve itself. I'll send prayers your way for your LO and you!

Quoting Kellen's Mom:" Dear Raych, My son also has torticollis and plagiocephaly. He wasn't diagnosed by our pediatrician until ... [snip!] ... needing a shunt. He's a happy boy and I'm praying that it does resolve itself. I'll send prayers your way for your LO and you!"

It sure is a lot of hard work. We get home visits bi-weekly through early intervention and Easter Seals. Thank you for sharing and the prayers are greatly appreciated.

My son has been in PT since he was 2 months for torticollis. He never needed a helmet although his head is a little flat. His PT gave us a Boy head positioner to use in his car seat and during waking times when he was smaller relaxing in his bouncer etc. It won't 'fix' anything but it helps to keep the head in a straighter line to help with the torticollis and to help relieve some of the pressure from having her head flat against the back of a car seat, chair, bed.
And the Kenesio tape is a little expensive, combined with the skin prep. Our PT told us the tape would last 3-4 days between changes. BUT TMI the strips on his back go down a little past his butt crack and when he poo's the tape soaks the poo up (He is still EBF and has loose stool) so it lasts 1-2 days, sometimes not all day and he's 11 months. Also, his hand he sucks on the tape through his fingers and we trim it back, but it still doesn't last more than 2 days either. So I would suggest buying 2-3 rolls. We went through one roll in a week and a half and I would have preferred to know before hand as shipping is not cheap. Anyway.... keep up the good work.  

Get the helmet! My sons head looked just like that and we had to fight to get the helmet, He did not get it till he was 10 months old. It didn't help much because he got it so late. His head is still mis-shapen today. Don't wait get it now!

Quoting Angie Mother of Boys:" My son has been in PT since he was 2 months for torticollis. He never needed a helmet although his head ... [snip!] ... a week and a half and I would have preferred to know before hand as shipping is not cheap. Anyway.... keep up the good work.  "

I think her medicaid will cover all the costs of tape.

And right now for her head positioner we use this

It helps keep her head looking forward instead of always to her left.

Thanks for the suggestions!

Quoting April Bishop:" Get the helmet! My sons head looked just like that and we had to fight to get the helmet, He did not ... [snip!] ... he was 10 months old. It didn't help much because he got it so late. His head is still mis-shapen today. Don't wait get it now!"

Oh we will certainly try! Her next home visit is Tuesday so I will definitely push on the helmet.