Plagiocephaly Diagnsois :(

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Plagiocephaly Diagnsois :(

Postby kdreher » 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.

Kris




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Re : Plagiocephaly Diagnsois :(

Postby trish » Wed Sep 16, 2009 12:46 am

(((HUGS))) Try not to be hard on yourself. It's hard not to be bummed when our kids have to go through things that are painful or just a PITA. But, like you said, so many kids need this band that it's practically normal lately - it's nothing you did that caused him to need it.

I love the Giants theme idea - perfect for this time of year!! Hang in there. Hope insurance pays for most if not all.
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Re : Plagiocephaly Diagnsois :(

Postby frasiah » Wed Sep 16, 2009 01:22 pm

Kristine, please do not be hard on yourself. My son wore a band/helmet from cranial tech for a whole year. The band bothered us more than it did him. He wore it for 23 hrs a day with one hour for cleaning. The band made a huge difference and we do not regret paying for it; our insurance would not pay for it so we had to pay out of pocket. We never decorated his but I have seen beautiful pics of others. They have come along way and I hope that insurance pays for it.

Sending you lots of hugs...
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Re : Plagiocephaly Diagnsois :(

Postby jamie w » Fri Sep 18, 2009 00:48 am

I am sorry to hear of your baby's diagnosis. Whether it is 1 in 60 or 1 in 1 million kids that get a diagnosis, it is so hard when your kid is that 1. I am glad to hear there is a way to correct the problem. It is really hard not to play the "what if" game but you have to be easy on yourself. (((HUGS)))
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Re : Plagiocephaly Diagnsois :(

Postby darateacher » Mon Sep 21, 2009 05:38 pm

Adam and Noah both wear the DOC band, and it really works fast!!! In fact, Noah's will be off before Halloween, and they've had theirs since August. Adam's will probably be off by Thanksgiving. gotta tell ya...they're great! The OT's are wonderful where you're going, as we have an office out here five mins from our house. I was worried about how "outsiders" would react to the bands, but no one's said a word. We've even decorated them. Have you seen the DOC band calendar? Totally gives ideas on how to decorate a DOC band. I hope your son doesn't have to wear it long. But, as I've been told, they really don't notice it. It only weighs about 4oz.
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Re : Plagiocephaly Diagnsois :(

Postby kdreher » Tue Sep 22, 2009 08:39 am

quote:
Originally posted by darateacher

Adam and Noah both wear the DOC band, and it really works fast!!! In fact, Noah's will be off before Halloween, and they've had theirs since August. Adam's will probably be off by Thanksgiving. gotta tell ya...they're great! The OT's are wonderful where you're going, as we have an office out here five mins from our house. I was worried about how "outsiders" would react to the bands, but no one's said a word. We've even decorated them. Have you seen the DOC band calendar? Totally gives ideas on how to decorate a DOC band. I hope your son doesn't have to wear it long. But, as I've been told, they really don't notice it. It only weighs about 4oz.



Thanks for the feedback. I actually am taking Michael to a different place that does this treatment becuause the original place I mentioned does not participate with my insurance and my plan doen't cover out of network. I cried at first but then found out by calling my insurance there are other companies who treat plagiocephaly. The good thing is this place is 10 min from my house and I guess it's like getting a second opinion. We will have measurements and the digital scan.

I know that it is the best for him and now I'm much better with it all. Hard to just hear the news as you want your preemie to just grow and be fine.
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Re : Plagiocephaly Diagnsois :(

Postby darateacher » Tue Sep 22, 2009 02:00 pm

I know that feeling! But, it's also good to know...rather relieving...that many full term infants need to wear the DOC band, too. It's all about them sleeping on their backs when they can't roll over. I know that's the right thing to do to prevent SIDS, but it also causes flat heads in some babies.
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Re : Plagiocephaly Diagnsois :(

Postby kdreher » Thu Sep 24, 2009 10:33 am

dara..and that's the kicker. The numbers have risen so much yet insurance sees this as "cosmetic" and not a medical necessity. I'm still waiting to hear if my insurance will cover this with the new company. It's frustrating....
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Re : Plagiocephaly Diagnsois :(

Postby trish » Thu Sep 24, 2009 10:59 am

If they deny it initially I would have your Dr. call or write (which ever they need) explaining *exactly* why it's a medical need & not cosmetic. Sometimes they need to be pushed a bit and/or have the write wording & codes to cover things. (((HUGS)))
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Re : Plagiocephaly Diagnsois :(

Postby darateacher » Thu Sep 24, 2009 12:26 am

If you want, you can PM me. The other place in NJ with the DOC bands I know is covered by most insurance companies. :-) Otherwise, we wouldn't be getting Adam a second band, and that's the truth! So pricey!
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