Re: Re: New Member from Chicago--Debbie

[Guest guest]

Hi Debbie,

Thank you for your helpful information! We too were concerned that monthly adjustments were too long, but the doc we see feels bi-weekly is too frequent. I will talk to our ortho again and see if he will see us at least every 3 weeks. As for the fit of the helmet, it was originally leaving lasting bright red marks on Kathan's forehead, so the ortho shaved the inside and then it was too loose. The helmet was not even touching the area that protrudes, so the ortho added a piece of foam to the back of the helmet. I thought it was fitting better, but today when I took the helmet off for K's bath, the red marks looked worse than usual. I decided to keep the helmet off and see if the marks would fade. It has now been over 4 hours and the redness is still quite bad, and I am worried it might blister. I am not sure if I should continue to keep the helmet off until Monday when the ortho is back in his office. Any thoughts?

I do not know how many plagio cases our ortho has treated, but I do know he was recently a resident and is in the process of becoming board certified (he is board eligible now). Unfortunately, he seems to be the only ortho treating plagio in that clinic at the moment. Also, you are right that there is no STARscanner at this site. Thanks for the info on monitoring correction. How do they assess correction at CT? I wish I knew I could have gone to CT for an eval--I may still do so, just to get their imput.

I'll try to get some pics on the site and I will take bi-weekly photos as you suggest. Thanks Debbie--I really appreciate your support.

All the best,

Rekha (mom of Kathan, Starband since 3/24)

Debbie <dj2kirby@...> wrote:

Hi Rekha & welcome to our group!Wow!! What an emotional rollercoaster you've been on!! Thank God Kathan does NOT have cranio and it's "just" plagiocephaly. I cannot believe they never mentioned the word plagio to you, and mis-diagnosed cranio! How scary and frustrating for your family!At just 9 mos of age, I personally feel going in for chk ups of the STARband, which is active, just every month is too long to go. Kathan's head is still growing at a relatively good pace and is rapidly changing. Most orthotists have follow ups every 2 wks or so to monitor progress. I'd encourage you to request being seen every 2 wks or so w/your orthotist.Does his STARband fit him properly right now? Going 3.5 wks between casting & fitting of the band is also too long. You should ideally go no longer than 2

wks between casting & fitting, again, because of how fast the child's head is growing & changing. But if the fit appears to be ok, then great.Have you asked your orthotist just how many plagio cases he's treated w/the STARband?Many orthotists do "eyeball" changes in the baby's head and band. I wouldn't think just seeing if the band liner has gotten dirtier is a great way of montoring change, but I guess it would indicate contact or not. The red spot on the bossing side of the forehead is likely a good sign that pressure is being applied there. As long as the redness fades after the band has been off for 1hr. Often we can't see other red spots where light pressure is, so I probably wouldn't be too concerned about not seeing any on the non flat side of Kathan's head, esp with his full head of hair as you've described. Many orthotists actually do not take

measurments. They can be so subjective, that they aren't often taken. I'm assuming from your description, your STAR clinic does not have the STARscanner. The STARscanner is used in place of trad'tl plaster casting & is what the band is made from. It's also used to monitor progress usually on a monthly basis from what I've read. I hope Cigna will come thru for your covg and FINALLY receive the paperwork. I've heard many times ins. companies giving the old excuse "we never rec't the claim" blah blah blah. They use any & every excuse to delay or not pay. I'd strongly encourage you taking biweekly pictures of Kathan's head, from every angle, esp over top. This will help YOU monitor changes while banded. If there comes a time when you are not happy with the band or kathan's correction, I'd suggest you go to the Cranial Tech in Oakbrook for

a free evaluation. They'll take a look at Kathan's head and give you good advice and honest opinions. I used that location, and they're terrific. Do you have any pics of Kathan you'd share with us in our PHOTOS section "our plagio babies?" We'd love to see the cutie. Please keep us posted on his progress! You've made it this far!Debbie Abby's mom DOCGradMI> Hello Everyone,> > I wanted to share the story of my beautiful almost 9 month old son > named Kathan (pronounced like )with the hope of connecting with > others experiencing similar concerns. > > Kathan recovered well from a complicated birth and short NICU stay, > but we noticed early on that he continually favored looking to the > right and had great trouble nursing in the cradle position.

I > suspected tort, but these concerns were quickly dismissed by our ped > who thought Kathan could look to the left. We continued to try to get > him to look to the left, but with little or no success.> > The 3 month checkup revealed Kathan had low muscle tone (hypotonia) > affecting his arms and we were sent to a pediatric neurologist for > evaluation. It was this doctor who noticed Kathan had some > flattening at the back of his head, on the right side. My son was 4 > and a half months at the time, but had a full head of hair since > birth--thus the flattening was never caught earlier. They suspected > he might have cranio and sent us for an MRI and 3D cat scan, both of > which "confirmed" this diagnosis (at least according to the radiology > reports, which used language such as "most likely" and "felt to be". > We were in

the process of moving from Ohio to Chicago and were told > to follow-up with a cranio-facial clinic in Chicago and to prepare > ourselves for significant surgery if we wanted to correct > this "cosmetic" problem. The ped neurologist told us repositioning > would not help. The neurosurgeon we saw in Ohio before we left gave > us the ol' "it will round out on its own" and felt surgery was not > needed.> > We made an appt to see a craniofacial plastic surgeon in Chicago and > to our surprise he told us Kathan did not have cranio, but had plagio > and torticollis! We were shocked and frustrated, because at this > point he was 7 months and repo was not a viable option. It is still > amazing to me that all the doctors who cared for Kathan never ONCE > mentioned the word plagio. Anyway, after a confirmed second opinion, > we were helmet bound. I

wanted to go to CT, but our doc had a set-up > with a local orthotic company who uses the STARband. That company > was supposed to send in all the paperwork for predetermination of > benefits, but to this day, my insurance co (Cigna) still states they > never received it. I was getting impatient and concerned about time, > so I went ahead and had Kathan casted a month after our appt with the > doc--it then took 3 and a half weeks to get the helmet! I am STILL > waiting to hear about the predetermination.> > Kathan has been in his Starband for a week and a half now and is > adjusting fairly well. But, like other members, I have concerns > about fit and methods of monitoring correction. Adjustments are once > a month, as are appts with the doc. I asked the ortho how he > monitors progress and he said, "I just look at the inside of the

> helmet and I can tell". He also said the inside liner changes color > over time and that also shows him if the baby's head is growing. Are > these common methods? How do others monitor correction? The ortho > says he himself does not do measurements, only the doc does. > However, no one measured Kathan's head right before he started helmet > therapy, and it had been 7 weeks since his first appt. I tried to > repo him in the meantime (he had been receiving PT for his tort, > which helped this process) and felt there had been some improvement, > but since no one re-measured his head, I am not sure. I now regret I > did not take pics. Is it common not to measure again if a long time-> frame has elapsed before beginning treatment? Also, Kathan has red > marks on his forehead, where he has bossing, but I have never seen

> any red marks on the non-flat side, so I'm not sure if this is a > concern. (The ortho say it is not) > > Sorry for the long history and the many questions. I thank you all > for any thoughts you may have. Also, is anyone out there from > Chicagoland? Please let me know. Thanks so much.> > Sincerely,> > RekhaFor more plagio info