Ryan's Torticollis and Plagiocephaly

So, I've mentioned on here a few times that Ryan has Torticollis and Plagiocephaly.  Don't worry - they sound a lot worse than they actually are.  But with everything - there is always good and bad news.  We'll start with the first one - Torticollis.

Ryan's doctor first really noticed his torticollis at his 2 month visit by noticing that he was favoring one side of this body.  The definition according to Cranial Technology (http://www.cranialtech.com/ ) of torticollis is "that it is caused by the shortening of muscles in the neck, particularly the Sternocleidomastoid (SCM) muscle. This can occur from placement in utero, the birth process or being constantly in the same position in car seats, swings, etc. and not having the opportunity to turn their neck to both sides.  This often causes the head to tilt to one side and the chit to rotate to the opposite shoulder resulting in limited neck range of motion. Often, torticollis causes plagiocephaly since the child is favoring one side of the neck and pressure is always on the same side of the head".  Indications of torticollis involve babies favoring one side and as a result, limiting their range of motion and holding their head at a tilt.  

Again, taken from Cranial Technologies website, here are some pictures of torticollis. 

Mild Torticollis
Moderate Torticollis
Severe Torticollis

Ryan has what is deemed "Moderate Torticollis".  At our 2 month appointment Ryan's Dr. stated that we should begin therapy to help it and would need it a few times a week.  After about a month of initial visits to determine his severity, time to get insurance taken care of, etc , we started therapy the Wednesday after Christmas.  Thankfully between the time we were told of it (right before Thanksgiving) and the time we started therapy we had already started working with him to turn his neck the other direction.  So...by the time we met our actual therapist on the Wednesday before Christmas, he stated that Ryan's muscles were tight but not very tight and that we would only need to do therapy once a week with him.  Thankfully out in Longview, there is a company called "At Home Health" in which the therapist comes to your house.  This really works great for us!  So - every Wednesday at 10:15 we have our therapy.   Insurance approved us for 10 visits (2 1/2 months) and at Ryan's appointment this week when I asked if he thought our therapy would need to go longer, he said he didnt' think so and that Ryan was doing great.  Ryan does SO GREAT during his therapy.  Our therapist said most babies cry during it but Ryan loves it... so that is good! 

Now on to the Plagiocephaly......

Again, according to Cranial Technologies website, Plagiocephaly means a type of misshapen head that often results from external forces applied to the soft infant skull.  Many infants that have Torticollis develop Plagiocephaly due to the fact they don't have full range of movement in their head and therefore prolonged exposure to one side of the head will flatten it.

On Cranial Technologies Website, they state that there are actually three different types of misshapen heads. As causes of plagiocephaly are combined, it’s not uncommon to see heads that illustrate two of the deformities.




It was at our initial meeting with our therapist that he had mentioned something about Ryan having Plagiocephaly and could possibly need a helmet.  It was his opinion that Ryan had mild to moderate Plagiocphaly but that we should see his Dr and mention it to her to determine if he would need a helmet.  He sat Ryan in his lap and was showing me the side of his head where he had a flat spot and how Ryan's ears weren't exactly even on both sides.  I immediately just rejected this.  I didn't think he was that bad and was completely against the idea of my sweet boy wearing a helmet...  However, after some time and prayer, I started to really look at his head, do some research online and make the decision to ask Ryan's Dr her opinion since we would have to have her referral to see a specialist if that is what we wanted to do.  We had our appointment with his Dr. on Jan 2.  While she deemed it moderate and didn't think he would need a helmet, she referred us to a Craniofacial Specialist who we will meet with on Thursday January 31 in Dallas to get their opinion.

There are many factors that will go into whether or not Ryan needs a helmet with the first being the severity of his Plagiocephaly and what the Specialist recommends.  The second is the cost....depending on the severity of the Plagiocephaly, some insurance companies deem it as "cosmetic" and do not cover any of the cost of the helmet (which could go as high as $4000).  So...we shall see how it goes on the 31st.

If it turns out that he does need a helmet, it would look something like this and weighs about 6 oz.  I also found a really cute website in which you can pick out stickers to design your helmet yourself.










So,  in the meantime, before  meeting with the specialist on the 31st, we are trying to do a few repositional exercises with Ryan on our own in hopes of helping his head reshape itself. Some repositional techniques involve the following:

• Alternate the end of the crib your baby sleeps at or rotate how your baby lays on the diaper changing table.
• Place toys in various locations of the swing, crib or car seat to encourage diverse movement.
• Don’t always use the same hip and arm to carry your baby.
• Communicate with your child from both sides equally.
• Limit the amount of time your child spends in car seats, bouncy seats, etc (we put him on his tummy ALOT)
•  

 So...if you are still with me after all that medical jargon, I would like to ask you to pray for Ryan.  My mom has put Ryan on the prayer list at church in East Bernard and I'm asking here if you could please just keep him in your thoughts and prayers over the next few weeks?  I know that Ryan's situation is fixable and that there are many other children out there that are suffering from far worse, but Jason and I would still like your prayers.  Prayers that it might not be that severe, prayers for me and Jason that we do what is best for our son and prayers for calming.  This is quite stressful for me because I am unable to do anything for him myself and feel like if only I had done this, noticed this sooner, etc he would be okay.   I also spend a lot of time with Ryan making sure he gets adequate tummy time that I don't always give a lot of attention to sweet Nathan.  Thank you all.

Jason and Dawn