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Old 06-20-2006, 03:06 PM   #1
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DOC band/craniofacial surgery

I really hesitated in posting this here or anywhere because I usually keep stuff to myself instead of sharing! Just ask my nervous stomach.
Anyway, my DS has positional plagiocephaly and has had a DOC band for treating it for the past 2 months. The Dr's are now telling us that his head cannot be fixed in a spot where it is particularly wonky, his forehead. They want to do a major surgery to repair it.
Without surgery, they worry that his forehead will be the focal point of his whole face and no matter how handsome he is when he's bigger, he'll always be the guy with the forehead. I *so* want more for thim than that, kwim? Also we don't know if this will resolve itself with time or get worse!
What he has is a bossing of his forehead, it bumps out above his eyes and then goes up into his hair line instead of going straight up from his eyebrows like most people's do.
So we're going for a 2nd opinion with another craniofacial surgeon tomorrow and we meet with a neurologist next month to decide if/when we'll do this surgery.
The lucky thing is that I'm a blood match for DS so when he gets the blood transfusion with this surgery, its going to be my blood instead of a stranger's.

So we don't know what to do and I'm hoping that others on here have gone through this or know someone that has. I'd love to hear about it! Thanks!

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Old 06-20-2006, 03:59 PM   #2
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Re: DOC band/craniofacial surgery

(((HUGS))) We had to deal with the possibility of surgery for a different issue (bone and joint infection) when our DD was younger and I was a wreck. I hope you are able to learn more with his upcoming appts.

(We were at Children's in Dallas)

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Old 06-20-2006, 04:06 PM   #3
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Re: DOC band/craniofacial surgery

We'd have the surgery at Medical City and the Dr we're seeing tomorrow is at Children's. We live close!
TY for your support.
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Old 06-20-2006, 04:23 PM   #4
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Re: DOC band/craniofacial surgery

My nephew had the same thing and he wore the DOC band for quite a while. It helped a lot but it took a lot longer than 2 months. I'm glad your getting a second opinion, and if you don't feel right about it get a third too. and I hope you get the best possible outcome.
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Old 06-20-2006, 04:42 PM   #5
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Re: DOC band/craniofacial surgery

Thanks Jill. His head has really changed in the past 2 months and they say its as changed as its going to get, but it isn't doing a thing to help his forehead but making it more symmetrical (sp?)
I'm anxious about this surgery, it makes me ill to think about it.
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Old 06-20-2006, 05:15 PM   #6
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Re: DOC band/craniofacial surgery

I can't even imagine my baby having surgery, so I am sooo sorry that you are having to go through this. I don't have any experience with it, so all I can offer is .
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Old 06-20-2006, 06:04 PM   #7
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Re: DOC band/craniofacial surgery

Quote:
Originally Posted by Irishmommy
I can't even imagine my baby having surgery, so I am sooo sorry that you are having to go through this. I don't have any experience with it, so all I can offer is .
I have to admit, it is pretty rough to imagine. DH confessed to me last night that he keeps having flashes in his mind of the surgeon coming out and telling us that DS passed away during the surgery. How am I supposed to feel good about this with DH telling me stuff like that!?!? Doesn't he know he's supposed to be the strong one? Really, we're both very scared.
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Old 06-20-2006, 08:58 PM   #8
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Re: DOC band/craniofacial surgery

Lochlan got his DOC band really early. At his age 2 months doesn't seem long enough. Theres a great story of it at HannahsNoggin.com also yahoogroups has some plagiocephaly groups you really need to check out. You might go somewhere else for your DOC band since its only as good as the fit KWIM? Other places wouldnt even TRY to fix L's crooked melon, but they agreed in Cleveland and ONE DOC band was enough, his plagio was "too severe" to correct with a band. His head isn't perfect, but nobody's is. Nobody else notices I think. I would find a place with a STarScanner for a starband, and see how his scan reads, that might help too. ((hugs))
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Old 06-21-2006, 06:32 AM   #9
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Re: DOC band/craniofacial surgery

Thank you! I'll google some of that stuff and see what I can find.
Riley got his DOC at 9 months, which is late. They told us that he'd wear it for 2-3 months.
We have another appointment today so I'll mention the starband to the doc.
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Old 06-21-2006, 10:24 AM   #10
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Re: DOC band/craniofacial surgery

goodluck today at your appts sweetie
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