Torticollis affecting Bf'ing?

[LaurieG]

I've been trying to figure out my dd's funky tongue coordination/ latch issues for almost 15 months now. She compensates well, but we still have occassional issues with breast pain (like this week) from what feels like her almost biting when she sucks. We've been to many different practitioners who all have a bit of a different theory on what is causing the issue. Today's theory de jour is torticollis. DD does tilt her head to the left most of the time these days but I hadn't noticed it when she was a newborn. The PT said it was most likely there all along.

Has anyone had a baby with Torticollis? If so, were BF'ing difficulties part of the deal? What specific issues did you have with BF'ing?

Any of the knowledgable LC's on here know if Torticollis tends to lead to BF'ing difficulty?

[ewe+lamb]

How was the birth with your dd? Could the neck/spine have been damaged during birth? Is your dd is turning her neck to one side in particular beyond what is considered 'normal', if so it could affect nursing as air and food tubes can be restricted so this is completely possible. Torticollis happens usually in adults however, this is why I wonder if the diagnosis is a bit premature. I would look into contacting and discussing this with a Chiropractor or Osteopath to see if they could come up with something for you which would make your dd a more efficient nurser but all things said and done this needs to be looked into and taken care of from a long term perspective as well. www.emedicinehealth.com may have more information for you and to check symptoms with etc, good luck and keep posting to let us know how you are getting on, hugs to your wee one and I hope that you manage to get this problem resolved.

[inhomecare]

I would like to second the suggestion of a chiropractor or even look into a cranial sacral therapist. Both can help with the neck issue and can help with breastfeeding issues.

[LaurieG]

Thanks Mamas. I took her to many sessions with 2 different chiropractors and a CST when she was a newborn and have done follow up sessions with the CST and 1 chiro periodically since then. She is currently being seen by that Chiro as well as getting physical therapy for her tilted neck/ torticollis.

What I'm wondering is whether anyone has ever heard of or experienced torticollis affecting breastfeeding? My dd's neck isn't so tight that she is unable to turn or tilt her head to the other direction but there is definite preference especially when she is standing to tilt to the left. Since we started getting adjustments from the Chiro my right breast is hurting and she feels like she is almost biting (unintentionally) when she sucks. Wondering if there is a connection???

[ewe+lamb]

Originally Posted by LaurieG

What I'm wondering is whether anyone has ever heard of or experienced torticollis affecting breastfeeding? My dd's neck isn't so tight that she is unable to turn or tilt her head to the other direction but there is definite preference especially when she is standing to tilt to the left. Since we started getting adjustments from the Chiro my right breast is hurting and she feels like she is almost biting (unintentionally) when she sucks. Wondering if there is a connection???

Ok I haven't come across this however, with the symptoms that you describe it is absolutely possible that this will affect her breastfeeding efficiently. If you go back to newborns and the position that is recommended - this is tummy to tummy, ear, should and hip aligned so that the neck isn't twisted around and that the passageways are clear for easy swallowing and breathing, with that in mind, yes it is clear to me that this would create a problem, also the tongue protrusion which is happening is not adding to the ease of her efficiently nursing. I think definitely there is a connection - maybe email Dr Jack Newman, he is a LC and ped, he will get back to you and certainly in your case I don't think that he would hesitate - log onto his website www.drjacknewman.com and email him to see what he would suggest as well, he may know someone in your area that would be able to help you resolve what's going on at the moment, I personally, would suggest trying to nurse like a newborn - i.e. in that position, with toddlers we tend to get more relaxed in their positioning and this could exacerbate the problem. I'm going to contact some folk I know to see if I can find out any other information for you, keep us posted in the meantime.

[inhomecare]

I found a few studies talking about breastfeeding issues being related to torticollis. All really only suggested CST and Chiropractic care to help, which you have already done?????? Well and PT too. I am sure that you know this too, but have as much tummy time while awake as possible. Torticollis can cause the lower jaw to be asymetrical which can cause latch and transfer issues...here is a book on google that shows a picture: http://books.google.com/books?id=Z9X...sult#PPA222,M1
Hope that helps!

[ewe+lamb]

"Boy, I second the suggestions and surprise that the chiro sessions haven't taken care of the torticolis, which yes, is common in newborns - the suggestion of nursing in the newborn position is a good one - even so, sounds like she needs continued professional help with her child..."

"I hate to say it, but she needs to see a Lactation Consultant as well to eliminate a tongue tie problem. The first symptoms, breast pain and biting sound like she doesn't / isn't capable of sticking out her tongue. Also, torticoli is common in newborns. I'm surprised her chiropracture hasn't managed to take care of it!!"

These two paragraphs are replies from folk I know, one an LC, hope that these of use and you manage to resolve things, let us know if there is anything else we can help you with.

[LaurieG]

Thanks for your thoughts again!

Yesterday I did email Jack Newman and Catherine Watson Genna, and then my own LC who has been unavailable for several days retured and we spoke. I also looked through my Human Anatomy book. Here's what we came up with, for those of you who are interested in this level of detail...

The sternoclidomastoid muscle is the one responsible for the torticollis. In my dd, the one on the left is too tight. This muscle inserts on the Mastoid process. Inserting just behind the mastoid process, on the Styloid process, is the Styloglossum muscle which attaches in 2 places 1) the Hypoglossus muscle and 2) the anterior portion of the tongue.

The Hypoglossus muscle attaches to the mindle and posterior portion of the tongue.

My dd is unable to elevate or extend her tongue fully. When she is crying or otherwise attempting to use her tongue that we can see, she tends to elevate the left side more than the right. All of these restrictions can be explained if we assume the tight SternoClidomatoid muscle has pulled one the jaw and caused some restriction of the Styloid process.

She also may have a mild posterior tongue tie. I had taken her to an ENT who felt the PTT was only mild and not contributing to the problems very much, and my own LC also felt her use of her tongue was not fully consistent with a PTT. But it could be a complicating factor.

I don't fully understand why it took 15 months to diagnose the Torticollis, but I think there were several factors involved. I think the chiropractors I took her to were able to adjust her and they felt she was good but the adjustments didn't hold. Because I took her to so many different people (1 would say she was good but her BF'ing didn't improve so I tried someone else) that lack of continuity didn't allow a practitioner to start to wonder "why isn't the adjustment holding?" Also, the Torticollis is pretty mild and she has a short neck making it even less obvious. And she has a lot of other issues that the CST was working on. Probably if I had kept up the CST she would have gotten to it, but I ran out of money and reached a point where all the different people messing with my baby were stressing us both out so I stopped it. It wasn't until she started crawling, and then even more when she started walking that the tilted head became really obvious.

So, that wraps up a 15 month long mystery. Thank you MDC!!! I never would have figured it out without you. The Mamas here are the smartest women on the internet!

[Panserbjorne]

What did Cathy Watson Genna say? Torticollis often present with PTT. Did she have any insight? It would also tell you why the adjustments didn't hold. Glad you are getting answers, mama. You are amazing!

[LaurieG]

Originally Posted by Panserbjørne

What did Cathy Watson Genna say? Torticollis often present with PTT. Did she have any insight? It would also tell you why the adjustments didn't hold. Glad you are getting answers, mama. You are amazing!

She said she does often see the 2 conditions together but she thinks that is because babies with only 1 condition compensate better and not that there is any connection between the 2. She thought the torticollis was the more problematic of the 2 and suggested that if we can address the torticollis but tongue mobility isn't restored then look into the PTT at that point.

Thanks for holding my hand through this, PB! You've been such a huge help.

[Panserbjorne]

I agree completely. There is no real connection other than a vicious cycle when they do occur concurrently. And absolutely figure out the torticollis. Yay for answers!

[LaurieG]

Originally Posted by Panserbjørne

I agree completely. There is no real connection other than a vicious cycle when they do occur concurrently. And absolutely figure out the torticollis. Yay for answers!

Yes, and maybe (fingers crossed) if we get the torticollis under control the food intolerances will resolve (hopefully).

[KimPM]

Originally Posted by LaurieG

Has anyone had a baby with Torticollis? If so, were BF'ing difficulties part of the deal? What specific issues did you have with BF'ing?

My DS had torticollis from birth, and yes, we had serious trouble BF-ing. He chewed me up one side and down the other. He had no problem getting the milk out of me -- it seemed he just chewed it out! He did have a very very strong suck to make matters worse for me.

But he also has SPD (senory processing disorder) and personally I think the real problem is that he can't stand the feeling of anything in his mouth so the chewing was his defense mechanism. We had physical therapy for the torticollis and CST at the same time. His neck straightened out from all this therapy. Somewhere around 3 months of age (after some of this therapy) he learned to chew on me less. He was still chewing, mind you, but somehow I could handle it and it didn't always result in constant bruises. The LC was truly stumped about it and LLL was only of help in leading me to information about SPD.

He recently weaned, so we BF'd for 2 years and 10 months. It was an uphill battle all the way. If I hadn't been very insistent on BF-ing, it would have been so easy (and pain relieving for me) to just go to formula. BTW, he has never had a drop of formula. He was almost exclusively BF'd for the first 20 months. Truly, it was his lifeline. It was worth all the trouble getting him to BF so I could at least tolerate it. He's skinny, but he's growing and because of the BFing he was never DX'd as FTT.

I still wonder if he's got some hidden tongue tie issue. He does have a high palate too, though. From what I can tell, all of it plays into problems BF-ing.

We also had serious difficulty getting him to eat food. All of the above factors, and particularly the SPD, played into the eating difficulty. This was not your typical picky child. He just wouldn't touch food with his hands and anything that I spooned into his mouth (if he would let me) just came back out - gagging and vomiting. Serious texture sensitivity. We had many months of intense feeding therapy and finally, finally he's eating a few things. Now he's up to the level of being, almost, a normal, super-super-super picky toddler. Considering where he started, I can live with this.

Because of his limited diet, I've been able to tell certain foods that give him trouble. Typically the problem is rashes. He gets them when he's had most berries and apricots. I'm also suspecting fish is a mild problem for him. Not sure if any of his physical problems "led" to the food issues, but both DH and I have a number of food sensitivites and I have a couple of true IgE allergies. Personally I think his food sensitivities are mostly genetically inclined rather than caused by his physical problems.

[LaurieG]

Originally Posted by KimPM

My DS had torticollis from birth, and yes, we had serious trouble BF-ing. He chewed me up one side and down the other. He had no problem getting the milk out of me -- it seemed he just chewed it out! He did have a very very strong suck to make matters worse for me.

But he also has SPD (senory processing disorder) and personally I think the real problem is that he can't stand the feeling of anything in his mouth so the chewing was his defense mechanism. We had physical therapy for the torticollis and CST at the same time. His neck straightened out from all this therapy. Somewhere around 3 months of age (after some of this therapy) he learned to chew on me less. He was still chewing, mind you, but somehow I could handle it and it didn't always result in constant bruises. The LC was truly stumped about it and LLL was only of help in leading me to information about SPD.

He recently weaned, so we BF'd for 2 years and 10 months. It was an uphill battle all the way. If I hadn't been very insistent on BF-ing, it would have been so easy (and pain relieving for me) to just go to formula. BTW, he has never had a drop of formula. He was almost exclusively BF'd for the first 20 months. Truly, it was his lifeline. It was worth all the trouble getting him to BF so I could at least tolerate it. He's skinny, but he's growing and because of the BFing he was never DX'd as FTT.

I still wonder if he's got some hidden tongue tie issue. He does have a high palate too, though. From what I can tell, all of it plays into problems BF-ing.

We also had serious difficulty getting him to eat food. All of the above factors, and particularly the SPD, played into the eating difficulty. This was not your typical picky child. He just wouldn't touch food with his hands and anything that I spooned into his mouth (if he would let me) just came back out - gagging and vomiting. Serious texture sensitivity. We had many months of intense feeding therapy and finally, finally he's eating a few things. Now he's up to the level of being, almost, a normal, super-super-super picky toddler. Considering where he started, I can live with this.

Because of his limited diet, I've been able to tell certain foods that give him trouble. Typically the problem is rashes. He gets them when he's had most berries and apricots. I'm also suspecting fish is a mild problem for him. Not sure if any of his physical problems "led" to the food issues, but both DH and I have a number of food sensitivites and I have a couple of true IgE allergies. Personally I think his food sensitivities are mostly genetically inclined rather than caused by his physical problems.

Wow! You are amazing for BF'ing for nearly 3 yrs under those circumstances!

Ellie does the chewing thing too, though not nearly as bad as it sounds like you were chewed. I never get bruises, just teeth marks.

As I'm asking around I keep running into people who had issues BF'ing a baby with Torticollis. I wonder why it was so hard to find information when I was searching for it in written form. Torticollis isn't even listed in the LLL Breastfeeding Answer Book index which seems to address nearly every issue known to humans.

[ewe+lamb]

Just wondering how you are getting on and if you have had any improvements in nursing. Hugs to you - just wanted to send you some good vibes I reckon!