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Torticollis and Plagiocephaly


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This may lead nowhere, but I just got to wondering if any others here had a similar experience when their kids were babies. Our son was born with torticollis and developed plagiocephaly (flat head) by the time he was 2 months old. We got him a "helmet" when he was 9 months old to help reshape his head. My friend's son also had plagiocephaly, had a helmet and was diagnosed with autism at age 2 1/2. I've sometimes wondered if the helmets might have done something to the boys' brains, but now it seems more likely that they both had an underlying problem (infection?) that may have caused both the torticollis and the autism/pandas.

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My daughter was born with torticolis. For the first 2 months after she was born, we stretched her neck into the direction of the pain 30 times, every 30 minutes, 24/7. She would cry in so much pain--my husband wasn't able to help. Then we switched it to every hour just during the daytime for 6 months. We were able to avoid using a helmet due to the stretching. So I'm guessing an underlying problem?

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My daughter had neither of those, but her metopic suture (runs from forehead to crown) closed early and at age 4 when she began to get really sick, it became a very prominent ridge. MRI and neurosurgeon said it wasn't a problem. (because, afterall, she's autistic)

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We had nothing like you describe at birth or as a baby, but my non pandas son was diagnosed with viral torticolis at age 2, with symptoms of fever and pain moving his neck, but it turned out to be an abscess in the back of his throat (not attached to tonsil) shown up on ct scan that had to be drained surgically and the bacteria was strep, but not group A, but still was strep. He was put on clindamyacin in hospital and at home after surgery. I think torticolis is a fairly vague diagnosis. This I am sure has not much to do with your situation because my son was very sick and not getting better, but I only posted because of the initial diagnosis name. Who knows if bacteria can cause similar neck issues without sick symptoms.

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I didn't have anything like that with dd, but I was reading a book on Cranial Sacral Therapy which may give you some link here. Can't remember the name of it, I was reading in naturopaths office, but It discussed restrictions of cranial bones disrupting the flow of cerebral spinal fluid, which can become symptomatic. It even discussed relief of autism for some patients with Cranial Sacral Therapy. I know that the medical field is starting to open up to this therapy. The last hospital I worked at even offered it at the wellness center. Maybe worth looking into.

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My daughter had neither of those, but her metopic suture (runs from forehead to crown) closed early and at age 4 when she began to get really sick, it became a very prominent ridge. MRI and neurosurgeon said it wasn't a problem. (because, afterall, she's autistic)

 

The sad thing is that they say "it isn't a problem" about a lot of things which in my opinion LEADS to autism, then they say it again when they have autism. Broken system, sad system, cheap system, I must stop myself here!!!!!!!!!!!

 

Anyway, my 5yo pandas son had neither. My 2yo pandas son had both, but we were advised that it was not bad enough to do the helmet. I kind of regret that now b/c although he is the cutest little thing, some people notice the dysmorphic shape of his face (I notice it but DH does not). I was told that possibly the torticollis was due to low muscle tone. Also, I may have been fortunate that he had reflux and was only able to sleep in the swing - the rounded shape of the bedding may have assisted in his flat spot going away. He also has Chiari Malformation and sometimes I think it is all related. I am definitley seeing a correlation btwn chiari and pandas flares. chiari only bothers him when pandas bothers him. all tied to inflammation I guess. Of course the neurologist says, no way those are tied together, to which I should have replied "oh, you know that b/c of all the chiari/pandas patients you have studied??"

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Thanks for all the responses so far! Lot's of very interesting info/insights. So far I count 4 PANDAS kids (including mine) with torticollis/plagiocephaly, one with chiari malformation, and one with metopic suture problem - plus one PANDAS sibling with viral torticollis at age 2.

 

Priscilla, we did try cranial sacral therapy when he was younger but I saw no changes in behavior/sensory issues.

 

Stephanie, I'm sorry you have regrets about the helmet. We were told to "wait and see" by our pediatrician (her favorite phrase and I eventually fired her for it.) and were told by Stanford that it wasn't bad enough to treat with a helmet (they see the worst of the worst cases). However, my sons forehead was visibly bulging out on one side and one ear was much farther forward than the other, so we didn't agree with them. We went out on our own, found a neurosurgeon an hour away who would give a scrip and flew to San Diego to get the helmet. Very expensive, but we've never regretted it. It's just so sad how some the doctors refuse to help sometimes. No different than my experience with PANDAS actually - some won't/can't help and you have to search for a doctor who will. The Chiara is very interesting. I've been thinking about taking Alex to my chiropractor, who treated him once as a baby. She actually has Chiara, so maybe I'll ask her more about this. I doubt it's our situation, but doesn't hurt to learn more.

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My ds had both. His had a broken collar bone at birth which was not detected until he was 8 weeks old. (He had PT for a while) His head would drop to the side when he would lay on his back and the side of his head got all smooshed in. We bought a donut pillow (yes it was safe) to keep his head up straight and it worked. His head shape went back to almost normal but in the following years I always thought that one side of his face looked slightly pushed in but I dont see that now.

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  • 6 months later...

I know this topic is over a year old but I thought that I would add that both my twins had plagio (one had scaphocephalic shape so badly we were referred to craniostenosis specialist at 9mths at a children's hospital an hour from us to determine if he needed cranial surgery...the other twin just had mild plagio shape but both qualified for helmets). The twin with the severe plagio also had severe torticollis to the point they considered performing a surgical release but after several months of PT and craniosacral therapy they decided the release was not necessary. To me my twins still have mis-shapen heads and the one with tort still leans to one side especially when you look at him from behind or side. The twin that had the severe symptoms also is the same twin that exhibits more disruptive/exacerbated PANDAS symptoms.

 

Twin A (severe plagio/tort) was also stuck at 0-station sunnyside up from 28wks till he was born at 34wks...on the otherhand, his twin had all the room b/c he was transverse and up much higher in utero.

 

Just thought I would add my two to the list...

Jen

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