DS has terrible neck tilt and the stretches make us both misearable

I forget what it is called but DS has it and the mishappen head that goes along with it. I had been reading some recent posts and realized that this is exactly what DS had. I took him to the ped today who said it is a pretty significant case but we should be able to avoid a helmet/etc. if we start with the stretches now and are hypervigilant about how is facing.

It is nearly impossible to position him in a way that keeps his head from tilting and I am killing myself trying to be sure I hold him/ feed him/ etc. in the opposite position. He hates it and sometimes it is like his neck won't ever go the opposite way. I tried to do the stretches tonight with him and it was terrible. I don't know if I am doing it right and I am afraid to do it like the Dr. did because I am afraid to hurt him. I am a little scared and sad for him. Does anyone else dealing with this problem have any advice. Are the stretches so hard to do? Do you do them while he is lying down or while holding him? I have spaced on how the ped did it as he was screaming the entire time and I was so nervous about doing it at home. The stretches are just ear to shoulder and chin to shoulder on each side.

Ds's head was already a mess from being pushed up against my pelvic bone and now this is making it ten thousand time worse.

Amy

 

Both of my girls always favor one side. When I try to turn their heads in the opposite direction, they freak out! What were the stretches they wanted you to do? Are they making you see a physical therapist?

Thanks,
Jen

 

Neither one of my boys had torticollis, but I have known several kids who did. I think it may be important to get a second opinion on this. I am on the 1-5 board, so I don't know how old your twins are, but I know it is important to start getting this fixed asap. My son was born with a slightly clubbed foot, and they told me to do the stretching thing. It just wasn't working. FINALLY we saw a specialist...an orthopedist, and he said he should have had something besides stretching done right at the beginning. Well, since he didn't, he had to wear braces, which he would've had to wear anyway, but he was older and almost crawling by this point. So, it was much harder on everybody. It's probably not the same for torticollis, but you may want to make sure. Good luck!

 

It sounds like you might want to seek a therapist who you can see on a consistant basis who can help teach you and show you how to do things with the highest level of comfort possible. You should not have to watch once then do it yourself.

Glad to hear the head shape is not requiring treatment, I do want to share that seeking treatment is not the end of the world if it is needed. I see lots of posts about avoiding the dreaded helmet, it really isn't any different than casting a broken arm or leg and doubt any parent would decide not to treat broken bones. I would just keep on top of it and if positioning isn't improving the condition then I would seek a specialist opinion in addition to that of your ped.

ETA: Sorry to repeat, there were no responses when I started my response.

 

QUOTE(Dianne @ Jul 23 2007, 08:23 PM) [snapback]342074[/snapback]
It sounds like you might want to seek a therapist who you can see on a consistant basis who can help teach you and show you how to do things with the highest level of comfort possible. You should not have to watch once then do it yourself.

Glad to hear the head shape is not requiring treatment, I do want to share that seeking treatment is not the end of the world if it is needed. I see lots of posts about avoiding the dreaded helmet, it really isn't any different than casting a broken arm or leg and doubt any parent would decide not to treat broken bones. I would just keep on top of it and if positioning isn't improving the condition then I would seek a specialist opinion in addition to that of your ped.


Ditto...

At 8 weeks, my son began physical therapy for his torticollis. He was pretty severe. Often times babies have a head tilt but dr.s wait to send them to therapy because a lot of the times, it corrects itself on its own. However, when it is more severe pt sould begin earlier.

My sons pt told be excercises to do at home. Then when we went to pt, she stretched him in ways I could not. She massaged his muscle in a certain way (something I could not do at home). We now go once a month but at 8 weeks we went once a week. Then around 20 weeks, I felt he was not making good progress so he went 2X a week and then slowly was able to go less and less as he improved.

My son also had a misshapened head and he went to a cranial dr who after measuring him, determined he did not need a helmet. I am positive though it was because of the pt he was receiving.

How old is your son? Let me know if you have any questions.

 

It is very hard sometimes. My DS is very strong willed and would often fight me when I started doing the stretches. (My PT said stop as soon as he got upset b/c otherwise he would learn to associate it w/ something he didn't like.)
my advice is this:
1.try to figure out when he is most relaxed and try to sneak in a few stretches here and there(for my DS it was after feeding and now we do a few w/ every diaper change as suggested by other TS moms)
2. don't expect to get it all perfect the first time, it takes a little practice and trial and error on how to do the stretching in a way that works best for you and DS.
3.try to go slow, stretching works best when done very slowly and you will work up to the full stretch as the muscle relaxes w/ each stretch.
4.As pp said ask for a referral to a PT Asap, even if you only end up having to go a few times it will really help.
5.If you need reassurance, I suggest doing a search on TS for torticollis, it will probably answer lots of your questions.

feel free to pm me too.

Alyson

 

I agree with Dianne- you should prob see a PT...hopefully that isn't cost prohibitive, they can work with the baby for a while to get him used to the stretches and you could continue them when you feel comfortable.

Also wanted to add that I hope things work out and a helmet isn't necessary but take a look at my avatar...it certainly ISN'T the end of the world...Joseph adjusted to his in no time (literally- he had no problems aside from VERY sensative skin from day one and the skin issue was resolved in less than a week.)