Monday, January 19, 2015

Torticillis & Plagiocephaly

I am going to add a new topic to my growing list of "what to blog" on my blog. I have decided to add a documented of journey with our second boy's conditions, and I think it would be kind of neat to see "Before/After" of what we have been doing with Frankie.


I am pretty sure I will mention this here, and there in Frankie's monthly letters, but I don't want his monthly letters to be overly dictated by those conditions, and dismiss his other accomplishments. That way, I can go into more details about what is happening with Frankie if I make separate blog notes about this. 

Frankie has been recently diagnosed with Congenital Torticillis. It is a term to describe a tightening of a muscle in the neck that prevents one from having a full range of neck movements. It is akin to having a pulled muscle. Frankie had it since birth, most likely from how he was positioned inside the uterus while I was pregnant with him (being a breech), and it was not until when he was about 4 weeks old when I started noticing that something was up with Frankie. I expressed my concerns to Stu about Frankie's left ear being bigger than his right, and how he kept looking away to a distance over my shoulder. He also had a very flat spot on his left side. Stu brushed my concerns aside, thinking I was being very worrisome, and I tried my best to move on. After we returned home from Christmas trip, I did a bit of research, and saw that having a flat head was perfectly normal in babies along with asymmetrical body parts. I resigned to the fact that I was probably being overly worrisome, despite me being a second time mom, and I tried to move on. One day, Stu finally understood what I was trying to address about Frankie's flat spot on his head, and agreed that it was really flat--flatter than it should be. I tried to make an appointment for Frankie before his "six weeks" (he has an appointment at 8 weeks not six, hence the quotes) wellness check, and was unable to get in. 

a noticeable tilt of Frankie's head



It was not until my own six weeks postpartum check that I was able to get Frankie in to be seen by a pediatrician. My interpreter, C, had noticed that Frankie had a tilt of his head, and that he was staring over her shoulder rather than looking around the room. It pretty much confirmed what I thought. To my relief, it was not vision related, and C had informed me she had already seen this with other Mama's baby. She assured me that it was not something severe, however, it was a condition that needed to be worked on. After my appointment, we met with other pediatrician, since our regular pediatrician was out that day, and she diagnosed Frankie with Congenital Torticillis. We were referred out to a physical therapist, and I was lucky enough to have Frankie get in the next day. 

Dave taught me two neck stretching exercises for Frankie, and was told to utilize the exercises at home with every diaper change/feeding. I also began repositioning Frankie during his sleep time by putting him on his side rather than on the back, or Frankie's favorite side, babywearing him as much as possible to avoid Frankie from being on his back for too long, supervising Frankie during tummy time, and of course,doing physical therapy sessions. 

We scheduled a second follow up appointment in two weeks from that day. I began working on stretching Frankie's neck since day one, and noticed that Frankie often was able to turn his head to the right by end of the day. However, Frankie was back to favoring his left side every morning. I was informed that this often required a long process of physical therapy to correct the wry neck condition. 



Frankie got referred to an Orthodist specialist through Hanger, and we learned that Frankie also had Plagiocephaly. It basically referred to a flat spot on the head as a result of weak neck tone, positioning in the womb, or interrelating with other condition such as Torticillis, to name one. Interestingly enough, I learned that breech babies were prone to having a flat head from their heads being wedged under their mothers' ribs, and also of course, because Frankie had a limited range of neck movement, his head rested constantly on the left side, and it led to a flat spot. 

Frankie's head was measured to be above 10 MM, and anything below 10 MM was considered to be cosmetic by insurance. Frankie's head was oblique shaped, and it was not something he can outgrow of. It was recommended that Frankie should start helmet therapy after 8 more weeks of physical therapy. We scheduled an appointment to meet with Dr. Stacy in early March to discuss the helmet fitting, and care for Frankie. 

You can see that his head is a bit tilted despite neck support, and his eyes were looking over his favored side. 

From top view: his head is oblique shaped

Side view of how his head is shaped

Right now, we are brainstorming ideas for what decals, and sign that Frankie can have for his helmet. It's fun to come up with ideas for his helmet. We are looking at Green Bay Packers, Zombies, Star Wars, Batman, and Marvel Comic Super Heroes. It is possible we may go with Packers, but we will see. It is to make a positive spin out of him wearing a helmet!

I don't have much details about Frankie wearing a helmet, procedure that involves with fitting, and how it works just yet. I will find out at his next appointment, and I will be able to give you an update.

As a mommy, I feel a bit extra overprotective of Frankie, especially with his conditions being no longer "invisible", and I kind of dread rude questions or stares when Frankie is wearing a helmet. Now, if they are normal questions out of curiosity; I welcome them, and I will do my best to answer the questions. It's more of rudeness that I don't look forward to. I know how that feel as a Deaf person. In a way, I guess it is a good thing I have this experience, because now I know how to facilitate the questions, and comments.

It will be interesting to see the progression over the time of how Frankie's neck, and head are shaping up (literally, and figuratively, ha ha). Stick around if you want to keep up with what is happening with Frankie!!