Torticollis Moms- Questions

If your DC had/has torticollis, what resources are you using?
How long did you get services/help?
Experiences please?

I see a neuro, get EI at home, PT services at home 2x a wk, and he wears a helmet for his plagio.

Just saw the neruo for an update and he isnt happy with his progress with his neck at all.

It is true that Ant does favor the right side still so much. I see it.

Hes 7mths old and I know that as he gets older, it should be getting btr but its really not.
Im thankful that he is reaching his milestones, rolling over, finally sitting up and reaching for things, holds bottle on his own, etc.
Something I was worried about since I know delays can follow.

My neuro has sent me to another PT, private, to see and get more answers....if I need to get more PT or what I can do at home.

IDK, I just feel bad for Ant.

Re: Torticollis Moms- Questions

are you in nassau county? Ian gets PT services through EI in Nassau. I worked with Harriet Bassett (sp?) and she hooked me up with our physical therapist now. I can't remember the agency she's from tho! but her name is Chris Delany. I love her! She has been giving Ian PT since he's 7 months old (i started late). he's now 15 months and was just approved for another 6 months.

He's improved a lot, but he's still weak from the tort. How long has your DS received services? I didn't notice a different for at least 3-4 months. but everytime Ian hits a milestone he reverts back to tilting. it's going to take time.

FM me if you need anything!

This was Ian at 6 months:



And now at 15 months:



its a HUGE improvement...but I still see the tilt.

Message edited 2/1/2011 10:25:51 AM.

Re: Torticollis Moms- Questions

Gia hat torticollis too. (she was baby A and her brother squashed her!) It was bad and I started private PT at about 3 months. By the time EI came to evaluate her, she didn't qualify. So, we continued with the private PT and by about 6 months, she was better. Her PT showed me things to do with her at home too on a daily basis. Just little excercises. Hope he gets better soon.

Re: Torticollis Moms- Questions

Posted by QTDimps23

are you in nassau county? Ian gets PT services through EI in Nassau. I worked with Harriet Bassett (sp?) and she hooked me up with our physical therapist now. I can't remember the agency she's from tho! but her name is Chris Delany. I love her! She has been giving Ian PT since he's 7 months old (i started late). he's now 15 months and was just approved for another 6 months.

He's improved a lot, but he's still weak from the tort. How long has your DS received services? I didn't notice a different for at least 3-4 months. but everytime Ian hits a milestone he reverts back to tilting. it's going to take time.

FM me if you need anything!

Re: Torticollis Moms- Questions

Posted by Smileyd17

Posted by QTDimps23

are you in nassau county? Ian gets PT services through EI in Nassau. I worked with Harriet Bassett (sp?) and she hooked me up with our physical therapist now. I can't remember the agency she's from tho! but her name is Chris Delany. I love her! She has been giving Ian PT since he's 7 months old (i started late). he's now 15 months and was just approved for another 6 months.

He's improved a lot, but he's still weak from the tort. How long has your DS received services? I didn't notice a different for at least 3-4 months. but everytime Ian hits a milestone he reverts back to tilting. it's going to take time.

FM me if you need anything!

TY so much for sharing that.
Your son is just the cutest!

I do receive it through Nassau, 2x a week it what he qualified for.

I will admit that at home, I lack the excercies with him. I am SO consumed with all the other things, dealing with twins and a toddler...work etc.

I try to make him turn his head to the opposite side and put him in the bumbo more or excersaucer.
You can even see in my avatar pic, his tilt or favor to that side.

Its obvious that its very severe tort. An was Baby A and head down most of the pregnancy. He was smooshed by his chunky brother.

I just hope theres nothing else wrong and that in due time this will get better.

Re: Torticollis Moms- Questions

Carlo started physical therapy privately at about 3-4 months and he has been in EI services since he as about 6 months

Re: Torticollis Moms- Questions

I think I may have told you some of this already, but I can't remember so I'll share my experience.

Georgie started going for PT for tort 2X a week in mid-December. He was almost 6.5 months old. Almost immediately, we noticed a difference with his neck and overall strength. He started rolling over both ways and reaching for things with both hands. The physical therapist also showed us simple things that we could do w/ him at home to help build up his strength. He really no longer favors one side over the other. I think he will "graduate" from PT in a few weeks. He got his helmet on 12/26. His head shape is making progress.

We didn't do EI, but just had our dr write a prescription for PT. Our ped recommended a terrific PT who specializes in babies. She is awesome and is so attentive and caring. FM me if you want more info.

I know how stressful and frustrating this is!



ETA: Okay, I admit it....we didn't do the exercises w/ him @ home too often. With twins and working FT, it's just not always possible!

Message edited 2/1/2011 10:59:01 AM.