Re: New Front Page Star - JOSEPH!

[Guest guest]

Thanks, we are still here, we are now 6 months post band. was big and late, he was 8 days late and 9 lbs 4 oz at birth. Couldnt tell if he had anything at birth or not b/c he was my only baby who had any molding (cone head) but we noticed the Plagio before he was even 8 wks old so he had it pretty early. I thought it was still molding though and din't know how long that took to go away. DH insisted I ask about it at his 2 mo check though, the doctor said we would watch it. At 4 mo his head hadnt grown though (and he still was misshapped) so they wanted us to come in for a remeasure in a month. At that point my worry was craniosynosis. I thought Plagio was something babies got from being on their backs all the time and just pretty much neglected, not something my sling baby would have. I didnt know the word for cranio but knew there was something that could happen if the babies skull prematurely fused so I looked into that a little, I saw plagio briefly in that but still thought it was a flat back of the head. At 5 mo his head had grown but they sent us to a neurosurgeon to rule out CS anyway, in the meantime (b/c it was 6 wks before the earliest appt) though the neuro thought it was probably plagio and suggested CT. So I looked into plagio more and realised that was what he had and thanked God b/c the pictures of surgery for cranio were so scary. I learned what to look for too and at that point saw it was more than just the flat spot on the top side of his head, I saw the flat side, the forehead bosing, the ear and eye assymetry, etc. We tried repositioning him while we waited for the neuro visit but he was very mobile by then so didnt see any progress.

The neurosurgeon ruled out cranio with only feeling his head. Of course like has happened to many the NS said he didnt look so bad, besides he will probably outgrow it if kids dont outgrow it you would see all these adults with crooked heads walking around. So he suggested we do nothing. What he said made sense but got me watching and I was surprised by the # of adults and older kids I saw with crooked heads, even on TV there were sports stars, news anchors, etc with issues. Considering I had learned that the incidence of plagio used to be only 1 in 250 compared to now it being 1 in 60 there shouldnt be so many adults with crooked heads (especially if they " outgrow it " ) so that sure encouraged me to pursue it.

We went for a consult at CT and learned he was moderate to severe with acarnial vault, traditional cranial vault and skull base assymetry of 17, 15 and 15 mm. We couldn't understand how the NS could say it wasnt bad yet have him be close to severe. We also learned we would have to pay up front and might get reimbursed out of pocket. We decided to look for in network and found Hanger locally (CT is 2 hrs each way). Our consult there was very different. The scan was very neat yet they said he measured only 2 mm assymetry which is normal even though she said she could see the assymetry. On the computer they also only took 1 measurement. I later called back to see about his ear assymetry and they said the scan (they planned to use to make his helmet) didn't include his ears well enough to get that measurement, we would have to bring him back in. They also said BCBS of SC never pays without a fight even after they lost a lawsuit here. And that at 2 mm we would never get it covered but he would benefit from it. They also said they never see ear improvement. So then I questioned CT who said that ear improvement is based on skull base which is smaller bones so harder to get improvement on but that they do see improvement. At his age (8 mo by then) and measurements they wouild estimate he would wear a single band for 3 mo and get down to about 8 mm assymetry. We decided there was just no way we could go to Hanger, even if it would be considerably cheaper (in network) if we got reimbursed b/c we didnt want to risk no ear improvement. Besides we figured the 2mm measurement would work against us

Since dhs company is self insured, it is just filed through BCBS for pricing/discounts/network and then paid by ad administration company dh decided to call HR and see what would be covered. They got us a case worker with the administration company who did all the legwork for us, even tried to get CT to bill them instead of us pay and get reimbursed. We had everything pre approved in a week. We were to pay and then fax them our recipt and the administration company would handle it directly. So at 9 mo old he was (very unhappily) cast. We received not only reimbursement but in network coverage in less than a week.

He was fit on one of the hottest days of the year during a 14 day streak of 100+ temps here in the south. It was already a tough day b/c during the 2 hr drive we got stuck in traffic where the interstate was completely closed, we had left about 20 extra minutes for traffic or in case we needed a diaper change or emergency nursing but the road was closed for over an hr (we only got up to it and sat for about 45 mins) so we ended up having to call and let them know we would be late, we ended up only 15 mins late where others were stuck in the same traffic and as much as an hr late. Of course who had been sleeping woke up and cried half of that 45 mins though. I was worried about getting the band b/c he wasn't a great sleeper to begin with and only tolerated baseball caps. He touched it and felt it once on but didn't fuss and didn't try to take it off. A few minutes later we distracted him and he forgot all about it. We got in the car and he didn't notice then either. During those 2 hrs between it being put on and going back for our check we had lost of practice b/c we had to wipe it out a lot, he was dripping sweat out the sides. After our check we headed home and he had some trouble getting comfy to sleep in it in the carseat but after about 15 min he was asleep. After that he didn't think anything of it and was fine with it, didn't sleep any worse, didn't bother it and in less than a week he had even adjusted to the temp and stopped sweating so much. He never bothered it though did start touching a playmates band, something he had previously ignored.

He was graduated the day after his 1st birthday. 2 wks later during his (unhappy) casting and remeasure we learned he had gotten down to a 4, 5 and 6 mm assymetry so better than they estimated. I still think he has room for improvement but they didnt recommend a 2nd band and dont usually if below 9. I went back and forth but dh didnt want to do a 2nd, he recently started questioning that decision but I think it was the way his hair was growing (it finally was growing) b/c it doesnt look as bad now (even though he barely has any hair still, not enough to cover anything up). Looking back at pictures I am very happy we opted to band. CT Charlotte was great.

I had a ton of fun decorating his band. You can see pictures of his weekly bands (with info on how they were decorated) at his blog at www.joeysmanicmelon.blogspot.com I submitted his photo for the homepage before we did all the cute bands so the one on the homepage is pretty plain.

On Thu, May 8, 2008 at 2:44 PM, <nwilkens2275@...> wrote:

Hi All.Please say hello to our newest Front Page Star, JOSEPH!ph's Mommy, if you are still with us, please share his plagiostory with us.Jake-20m (tort resolved/rt plagio/DOCBand 12 weeks)

Jordan-4 -- SC SAHM to , , , , and what should we name our baby girl?

http://www.babynames.com/namelist/9614412

[Guest guest]

Hey -

I didn't realize ph was your little guy. He's so cute! Thanks

for sharing your story!

Jake-20m (tort resolved/rt plagio/DOCBand 12 weeks)

Jordan-4

>

> > Hi All.

> >

> > Please say hello to our newest Front Page Star, JOSEPH!

> >

> > ph's Mommy, if you are still with us, please share his plagio

> > story with us.

> >

> >

> > Jake-20m (tort resolved/rt plagio/DOCBand 12 weeks)

> > Jordan-4

> >

> >

> >

>

>

>

> --

> SC SAHM to , , , , and what should we

name our

> baby girl?

> http://www.babynames.com/namelist/9614412

>