Anyone have torticollis experience?

[penstamon]

DS, 7 mo, has torticollis and silent reflux which are somehow related. There is some research indicating that one causes the other and vice versa. We've seen 3 pedis now that think both his conditions are only mild and do not warrant any further testing. We did get them to agree to refer us to a pedi GI just to be safe. Our therapist and chiro both agree that the two are related and regularly have great success treating them in infants. However after around 1.5 months of treatment we are no better than where we began. DH and I do everything we can at home- and I mean EVERYTHING- but his head still tilts and his reflux still hurts him. Our worst problem is constant painful night waking ( I posted a thread about this further down) so we are all sleep deprived and quite miserable.

Anyone with torticollis experience? He doesn't have the benign neck tumor, has great range of motion and rotation, and only slight head/face changes (which everyone is still calling mild). I am so scared that nothing is helping and feel awful that we keep being told to wait it all out. I worry constantly now and my instinct tells me to pursue other avenues, but WHAT?

[mbravebird]

I saw in your other thread that you're already seeing a craniosacral therapist, right?

Our son's torticollis was mild and was addressed with craniosacral. We found CS more helpful than chiropractic.

I don't know...EFT? So sorry to hear about the struggles.

[KimPM]

For the torticollis, we did CST and physical therapy at the same time. It seemed the combination of both of them worked great. I also did a lot of stretching on him all the time at home. We started when he was maybe a month or month and a half old. It took about 3 months to get improvement to where it seemed mostly normal. Then another few months to where you couldn't really tell he ever had it. They say the earlier you start PT, the better. It may take longer when you start with a 6 month old than with a 1 month old.

My DS's gastric discomfort was largely caused by my eating foods that I was sensitive to (he was BF'd). My breastmilk was actually foamy (!) until I stopped eating my offending foods. I got tested for food sensitivities when he was a year old, so I didn't know during his first year. I was also eating foods that he is sensitive to as well, and I only discovered those later.

[Momo123]

My DS's torticollis seemed mild (no tumor, slight tilt, mostly just would not turn to one side) but it took about 3 months of trying different things to see results. We tried craniosacral therapy, chiropractor, physical therapy/stretching at home but what helped the most was an occupational therapist we saw for breastfeeding issues who also practiced ortho-bionomy (osteopathically based form of therapy) and craniosacral therapy. I think it was because she had a lot of experience treating torticollis. The other practitioners said they did, but I didn't see results after weeks of treatment. I'm not sure about the relationship to silent reflux because we didn't have that but I hope you are able to find relief for your baby soon!

[penstamon]

Thanks for the replies! Its good to hear that you didn't see results overnight. I made an appt with another PT just to get another take on the situation. The worst part is we lose our good insurance in 3 months, so I am praying that the bulk of these appts is over with by then!

[Panserbjorne]

I would definitely echo the CST over traditional chiropractic as well. And no, things don't change overnight. It takes time. I refer people to a PT that does CST and see consistently great results over the course of a few months. Good luck!

[es1967]

My DS was diagnosed w tort at around 8 months. We also did physical therapy and he was tilt free at around 13 months. With regards to PT we only went 1x per week (after the initial month)and then did most stretching at home. If he gets sick or is going thru a growth spurt he will tilt a little. Other than that he is straight all the time. It does take time. Good luck.

[KimPM]

Originally Posted by penstamon

Thanks for the replies! Its good to hear that you didn't see results overnight. I made an appt with another PT just to get another take on the situation. The worst part is we lose our good insurance in 3 months, so I am praying that the bulk of these appts is over with by then!

If they are not teaching you how to stretch him, they should be. You should be doing the same stretches at home, several times a day. At least that's what we experienced.

[sahmmie]

Originally Posted by KimPM

If they are not teaching you how to stretch him, they should be. You should be doing the same stretches at home, several times a day. At least that's what we experienced.

I agree. We were told to do the stretching exercises 3-4 times a day at home. Still it took a few months for complete healing.

Does your baby sleep on his back, or side? If he's a side sleeper make sure you flip him often from one side to the other, and if he's a back sleeper it can help to turn his crib so that he has to turn his head in the opposite direction (from what he does now) to see things in his room. Babies tend to turn their head towards the door where they anticipate mommy coming to get them.

Also I was told to hold her in my right arm which was not the way I would normally hold her so that she would have to turn her head to the left to see me (her head always tilted towards the right), and to place most of her toys, mobiles, mirrors, etc on her left side, again to encourage her to turn her head to the left.

My other two babies had reflux. I agree that food issues are sometimes the culprit, but not always. Dairy, soy, and corn (lots of formulas contain corn) are common triggers. However sometimes reflux is simply a "mechanical" thing; that is the LES (lower esophageal sphincter) does not stay closed after a meal as it should and the result is reflux. Sometimes medication is really the only solution. My first refluxer was never properly medicated and it was horrible, but my son was on Prevacid which really turned things around for him. Both of mine outgrew reflux at about 9 months which I've read is quite common.

Best wishes. I hope things improve soon.

[es1967]

Forgot to mention that I belong to a Torticollis group on Yahoo and found that very helpful. Check it out. DS also had some reflux. I always had him sleeping kind of upright which really helped.

[heatherdeg]

Originally Posted by KimPM

If they are not teaching you how to stretch him, they should be. You should be doing the same stretches at home, several times a day. At least that's what we experienced.

Originally Posted by sahmmie

I agree. We were told to do the stretching exercises 3-4 times a day at home. Still it took a few months for complete healing.

Our adoptive daughter came home at 12 days and had rather serious torticollis. She started PT at 3mo and it had to be at LEAST another 3-5mo of us doing daily stretching before we saw any kind of result. Hers was so bad that she had a REALLY chubby, cute cheek on one side but a flat, lopside on the other. So if you turned her head straight, the difference in her cheeks was extreme. They worried she'd need a neck brace for not responding to therapy quicker. They worried her jawbone would develop improperly; and now at 16mo, we still have to watch her left arm to be sure that it keeps developing properly.

BUT... at 16mo. her face has filled out, she has what appears to be full range of motion of her head (only a very slight limitation--and this is from a rather severe case) and finally uses both arms pretty equally. That started before she was 1yo.

And we didn't know CST could help (or chiro for that matter) so we only did PT.

Hope this helps...