Tuesday, October 22, 2013

Twisted Neck

As soon as I brought Levi home from the hospital I could tell something was wrong with his neck. He would always have his head turned to the left, and whenever he fell asleep in his bouncy chair his head would go completely sideways. My husband looked at me one day and asked me if his neck was broken because it was that crooked! At first I just thought he was being lazy, so I would turn his head every time I noticed him favoring his left side. But by the time he was a month old I was really starting to get concerned, at that point he would never turn his head to the right, and when I tried to turn his head for him he would fight it and cry! My poor baby! Of course I googled what could be going on and everything I read said he most likely had torticollis, or twisted neck. Torticollis is just that your child may favor one side more than the other, and usually their head will tilt to one side. There are two kinds of torticollis, congenital or acquired. Congenital torticollis means your baby was born with the condition, and acquired means it happened some time after birth. I don't know why but it seems like every time I google something only the absolute worst case scenarios come up in my search. Basically, after googling infant torticollis for 30 minutes I frantically called my pediatrician because I was convinced Levi was gonna need surgery, and he was probably gonna have to wear a helmet. The nurses at my pediatrician's office are so sweet, they let me bring in Levi right away!

The pediatrician gave Levi a pretty thorough exam, and she agreed he had a pretty bad case of twisted neck. She was also concerned about his left arm, he was holding it way lower than his right- I hadn't even noticed that! She asked me if anything traumatic happened during his birth. Immediately my heart sank and I couldn't shake the feeling of guilt because I kept thinking, I caused this? During Levi's birth his shoulders did get stuck just for a second, but I pushed him out in seriously like 5 or 6 good pushes. I pushed for a total of 5 minutes, so how did this happen to his neck? She then went on to ask me to call my OB and see exactly what happened during my delivery. She gave me a referral to a physical therapist and she said to call as soon as possible because Levi needed to start therapy right away. She also warned me that he was probably gonna have PT 3 times a week for at least 6 months. Needless to say once I got out to the car I had a little breakdown! I was so worried my little man would have permanent problems with his neck and that he would be delayed. That was not a good day.

As soon as I got home I called my OB. Her nurse left a note explaining Levi's torticollis, and that I wanted to know what happened during my delivery. The nurse told me that my dr. would probably have to review her notes about my delivery because my OB office has so many patients. And then she will get back with me. Well, the dr. called me the following afternoon and she basically acted like she had no idea what I was taking about with Levi getting stuck. She said she had put in her notes that my delivery was perfect and that I'm an outstanding pusher. What??? My husband was nearly shoved over by a nurse trying to push my legs back, and the dr. and all the nurses in the room were screaming at me to PUSH! My husband even saw Levi get stuck! I was feeling pretty aggravated by the time I got off the phone.

I was able to get Levi into PT the following week. Thank goodness my older sister, Misty, was willing to watch Jackie while I took Levi to his appointment. Even without Jackie that first trip was kinda a disaster! I didn't realize that his physical therapist was located in a hospital until I got there. It was a HUGE complex. Because I didn't know where I was going I decided to get out our stroller so I wouldn't kill myself lugging my chunky baby boy around in his car seat. I only had our double stroller though, so I felt kinda silly pushing only one baby in a two kid stroller but I got over it, lol. Anyway, I found the right part of the hospital, got registered, found the PT office, and then it happened. Levi had a total meltdown. I don't know if you have ever been out somewhere and your baby or child starts screaming and you can't calm them down, it's so embarrassing! Of course this appointment was during our usual nap time, so I had a hungry, overtired infant on my hands. I had to get him out of the stroller and walk him around to calm him. Finally, the physical therapist came to get us and he did wonderfully for her! She quickly determined that he does have torticollis- but she says it's a very mild case! I was so relieved! She also told me that I must be a very attentive mom because most parents do not catch torticollis this early. I don't know how this could be true, I mean it was pretty obvious to me early on that something was wrong. Anyway, she quickly showed me some stretches to do with Levi at home, and she assured me that because of how young Levi is that this twisted neck problem is going to be resolved rather quickly. Thank God!

She had us come in a week later to check levi's progress. I am happy to report that in just one short week of doing stretches about five times a day, he has made such an improvement! The physical therapist said he was doing so well that we don't have to come back for 8 weeks! I have been doing his stretches religiously with him and I can't believe what a difference they have made! Levi will actually turn his head to the right by himself now to look around. He holds his head straight while doing tummy time, and he uses both arms equally now. And thankfully the shape of his head is completely normal so he won't need a helmet.

Have any of you had kids that dealt with torticollis? I literally don't know anyone whose kids have had it so I'm not sure what to expect. Any advice or similar stories would be greatly appreciated!






4 comments:

  1. I think my niece might have this, I just sent my SIL this site! She is only 2 months old!! Thanks for sharing

    ReplyDelete
    Replies
    1. Thank you so much! I'd love to connect with other mom's who have children with this problem!

      Delete
  2. My daughter had torticollis which I believe we didn't notice until she was around 3 months (but then we looked back at photos and saw it was there all along and felt awful that we missed it for all that time). We live in the DR with little resources so I researched most of it myself and learned to go exercises and stretches with her everyday, several times a day, as well as always placing her on the correct side of anything exciting so she would stretch her neck the way she didn't usually, in order to see the exciting things (toys, tv, people, etc.). I don't actually know when it got completely better... it took months. Unfortunately she does still have a bit of a flat head on one side at the back but not noticeable to anyone but me or a doctor looking at her. She is almost 22 months old now. So I would definitely just keep working on those stretches everyday.

    ReplyDelete
    Replies
    1. Thank you so much for sharing your story! I feel very relieved to know that the stretches do make a big difference!

      Delete