by kdreher (2482 Posts), Wed Sep 16, 2009 08:33 am
We had the appt yesterday with ******* *********** in CT. Lucky for us we do have a licensed facility near us or else we would have to travel to NJ.
The consult resulted in him being diagnosed with both plagiocephaly and brachycepahly. Plagiocephaly is the term used to describe the flattening of the soft skull due to pressure being placed on it (i.e. bouncy seats, car seats, laying on one side). Brachycephaly is the term used to describe a head that is shorter and wider. Normally our heads are longer then they are wide but in Michael's case his head is pretty much even with width and length. You can see by the pics what they are talking about especially with the front view of his check bones, how the right side is forward of the left.
I know that overall someone wouldn't look at him and think he had a deformed head...but since we are aware of this and it can be corrected, we are opting to do that. Physical training along won't fix the shape, but he'll also benefit from some PT of his neck and additional muscles. I have 2 stretching exercises to do with his neck at home right now.
So...the next step is he has a digital surface image done which has replaced the casting of the had to fit a DOC Band. He will need to wear a band for up to 12 weeks, it also depends on his growth rate. His case is moderate, not severe. A child can go w/o having this corrected but some issues down the road may be issue with wearing a helmet when playing sports, fitting of glasses, some vision problems, some jaw/orthodontic problems. Since we know this is all external and sort of cosmetic, it's best to address it now. The band is $3600 and I'm hoping my insurance will cover it. I did find that on
a Yahoo Support Group for Plagiocephaly, my specific insurance covered all of it but $150 for another family. There are also some very very cute ideas for painting and decorating the band so it's not such a sterile looking band...I'm having a flash of a NY giants theme for football season :)
This is a very common issue with kids today. As the push for putting babies Back to Sleep to prevent SIDS has been really emphasized, the cases of plagiocephaly has risen. In the past 1 in 300 kids were treated prior to the Back to Sleep campaign, today 1 in 60 kids are treated. A huge jump. So we are not in the minority.
So, this is the next phase of our first year. I will admit I was very upset latst night just because it's another thing Michael has to endure. Preemie mom guilt who works...throw that in there to. Will it
be painful, no...maybe more of an annoyance at times. I just felt like I should have done more....but...here we are. I am a little miffed with our pedi and wonder if he should have refered us sooner? Mike has never liked the dr and I am contemplating moving to a smaller practice.
I guess he could have the band in the next few weeks, he'll have to be seen every two weeks for adjustments and then we'll arrange for PT at home or daycare as well. He's happy and healthy and this is temporary so we'll just deal with it and move on.
I'm sure he'll look cute, as many of the other babies.
If you feel like you need more information you can email me for the link, and if anyone has been there before any advice woudl be great.
I just feel down today about all of this....I'm sure normal for a preemie mom and especially since he's doing so well. I'm bummed.