I know that you all are NOT doctors, but I am reaching out to see if anyone has personal experience with any of these symptoms. I have been to a Pediatric Nuerologist in San Fransisco, and have had random tests and seen several doctors. None of them seem to be able to give me any answers yet, so I am wondering if maybe someone out that has seen/dealt with this.
My 3 mo old baby was diagnosed with mild Torticollis (briefly: a shortened neck muscle on 1 side, causing the head to tilt 1 way). So we went to therapy and mostly corrected it. But lately it is back and we just cant seem to get rid of it. Then about 3 monthes ago (she is now 1 yr old) she started having these WEIRD head movements. For example...quick head jerks to 1 side...like pulling her shoulder up and head down, repeatedly, but with no consistancy/rythem etc. When these "episodes" happen, her arm is also affected, she pulls it close to her side and her hand was curled tight. So I paniced, but of course it stopped happening. Well in the last 2 monthes, I have just been noticing (like an overly observant mommy!) these simply weird/not right head movements. Little jiggles, little twitching, bobbeling, etc. Something tells me that something is just not right, my mommy gut will not leave it alone. The doctoers are not sure whats going on, or if its "just normal baby behavior".
Anybody recognize any of these symptoms or have any advice on what to do? Am I being crazy here? Should I just let it go and ride it out? The specialist said an MRI would possibly tell us more, but that involves anethesia, which is risky for little guys like this. But I just have to think its worth the risk at this point. Thanks for any advice : )
It sounds like MartyMomma knows what she''s talking about. I'd follow her advice and maybe if she's willing contact her directly for some additional advice and support.
My daughter was also born with a major degree in tilt caused by Torticollis. In the beginning all we did was Physical Therapy and it alleviated it some. It did not totally fix the problem. It came back full force at 2. It was worse when it re-developed than when she was born with it. So we were back in PT but it did not improve. She also had depth perception issues, as well as her muscles would tighten on that side, making it difficult for her to turn her head, or even use her shoulder properly. She had some jerky movements and compensated by holding her head and shoulders in a tilt. You baby might be have muscle spams and she may be doing it cause her neck and shoulder are hurting. Even a 5 degree tilt, which is minimal can be painful, if prolonged. My daughter recently went in for the Mastoid Release surgery. They cut and stretch the neck muscle that is shortened. It was very quick, tiny scar. Then 6 to 7 months of intense PT afterwards. She is at a 1 percent tilt and has just been discharged as fully healthy. However we have to keep an eye on it all the time. If she goes back to tilting at all we need to get her back in for Physical Therapy again. She may be having muscle ticks from the tightened mastoid muscle. Have them re-check her degree of tilting and get an MRI done to rule out neurological issues.
TO ADD: my daughter had major facial and skull reconstructive surgery at 6 months old. The surgery was a 6 hour ordeal where they peeled her face of and fixed her skull and Occipital bones to match up again. Took her entire forehead plate off and part of her nose bridge. Put it all back together and sewed her up. She was out of the hospital in 3 days. They do fine and bounce back phenomenally. Nothing like adults. My daughter had Craniosynostosis (premature fusion of the skull sutures) as well as Torticollis (wry neck) and Strabismus (lazy eye)
Yes! Video it and show it to your neuro. I would request an EEG. My daughter had an MRI at 6 months of age, yes it is scary but your child will have about 2-5 doctors in there while the MRI is going on. Each doctor monitors a specific part of the body.
Dont mean to scare you but she could be having some type of seizure and if that is the case you need to find out ASAP so you can start her on meds!
good luck!
Video it if you can. I agree that MRI might be worth it.
I would see if a doctor could check for the below. I doubt it's that though.
http://www.mayoclinic.com/health/tourette-syndrome/DS0054...
Maybe the Torticollis treatment was not done correctly. I know many babies have that these days. Keep on it though if you feel something is not right.
http://www.webmd.com/parenting/baby/tc/congenital-tortico...
Please seek a second opinion. I would want seizures ruled out.
I second Ellen B. Consult with a Doctor of Chiropractic.- Try the conservative route first.
My first thought was muscle spasms, especially if the torticollis is returning. Have you spoken with a specialist that deals with torticollis again?
Have you considered going to a chiropractor for a check? That is what I would do.
