Re: Re: Update: Re 2 weeks in a Doc Band and it may not be the answer

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I am praying for you both that you find an answer to this issue and that the answer is a simple way to correct everything. I know in life sometimes you feel like your the only one going through a particular issue but we are all here for you and are pulling for your baby to be fine and have the bulge taken care of. Keep us updated and great news with your insurance carrier. I wish you all the best. Tammy mother to who will be one year old tomorrow!!!!

From: <nwilkens2275@...>Subject: Re: Update: Re 2 weeks in a Doc Band and it may not be the answerPlagiocephaly Date: Friday, June 20, 2008, 9:36 PM

This is by no means a diagnosis, but I googled the word "mastoid" and found some stuff on something called mastoiditis, that could be the cause of Ethan's bulge. It's basically an infection in the mastoid bone located behing the ear, the infection starts in the inner ear. It looks like in most cases it can be treated with antibiotics, but in more severe cases would require surgery (called a mastoidectomy) . Definitely google it, I just took a quick glance at a couple of sites to get a general idea. Please let us know what the craniofacial surgeon says. I hope you don't have to wait too long for an appointment. It sounds like if you can get the "bulge" to go away, the band might be an option again. But I don't know how long that would take so a new band would most likely have to be made. Good news on Cigna! I definitely would not take the info from the insurance specialists as the definite

truth (I was told we would only get reimbursed 600 and we got more than 2100 back). I say always file a claim and you might luck out!Good luck!Jake-21m (tort resolved/rt plagio/DOCBand #2 2 weeks)Jordan-4> >> > i Everyone,> > > > I have been lurking and posting every now and again for the past > few > > weeks, but I haven't had the chance to introduce myself. My son > Ethan

> > was diagnosed with torticollis at 2 months old and we've been in > PT > > 3x/week ever since. (Ethan will be 6mo's at the end of June) He > had > > plagio at that time, and we started repositioning. At his 4 month > ped > > visit our dr sent us to CT in Paramus. He measured 16mm asymmetry > (a > > moderate case, but complicated by the tort). Before CT would make > a > > band for Ethan we had to have an MRI done because he has > an "atypical > > buldge" in the back/side of his head. The MRI was completed - and > the > > plates were not fused, totally normal. We went ahead with the > band. > > Ethan has been in the band for just over 2 weeks and we can't get > a > > good fit. The band has some freeplay (I guess this is normal), > but it > > gets stuck on

the other side of the buldge and never moves back. > Today > > we took more photos and a new DSI (he was casted originally), so > that > > Jeanie in AZ could make him a new band herself. I just got a call > and > > Jeanie is not sure that a band can be made for Ethan. They want > Ethan > > out of the band, hoping not to cause "the good side" to mold > > incorrectly as a result of an ill fitting band. I should hear > tomorrow > > as to whether or not CT/Jeanie can make a band for Ethan. > > > > OK, thanks for reading that long intro. I have found a wealth of > > information and support on this forum and I am hoping to tap into > it > > again. Honestly I am freaking out!!! If CT can't make a band I > don't > > know what my options are. CT told me that I would have to go to a >

> craniofacial specialist. Has anyone ever had a similar > situation? Can > > anyone recommend a craniofacial specialist in the NY metro area > (we are > > in Orange Co, NY - so Westchester, Rockland and Bergen Counties > are > > best - Manhattan is certainly not out of the question though). If > CT > > can't make a band does anyone know what the alternatives are? I > am > > assuming that if CT can't do it Star and Hanger would also not be > able -> > is that a good assumption?> > > > Also, I am a little confused b/c Ethan's head has been improving > (in > > just 2 weeks). Has anyone had this happen with CT and did you get > a > > refund? We had to pay out of pocket and if this isn't the answer > I > > could use that $ to pay for a viable solution.> >

> > Thanks for reading and sharing your knowledge. Oh and Ethan > hasn't > > slept through the night since he got the band and I AM TIRED, so > that > > may be part of why I am freaking out :-)> > > > Audra > > Mom to Ethan (5 1/2mo's) and andria (3 years)> >>

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Thank you both. I will let you know what happens when we go to the craniofacial center

Re: Update: Re 2 weeks in a Doc Band and it may not be the answerPlagiocephalyDate: Friday, June 20, 2008, 9:36 PM

This is by no means a diagnosis, but I googled the word "mastoid" and found some stuff on something called mastoiditis, that could be the cause of Ethan's bulge. It's basically an infection in the mastoid bone located behing the ear, the infection starts in the inner ear. It looks like in most cases it can be treated with antibiotics, but in more severe cases would require surgery (called a mastoidectomy) . Definitely google it, I just took a quick glance at a couple of sites to get a general idea. Please let us know what the craniofacial surgeon says. I hope you don't have to wait too long for an appointment. It sounds like if you can get the "bulge" to go away, the band might be an option again. But I don't know how long that would take so a new band would most likely have to be made. Good news on Cigna! I definitely would not take the info from the insurance specialists as the definite

truth (I was told we would only get reimbursed 600 and we got more than 2100 back). I say always file a claim and you might luck out!Good luck!Jake-21m (tort resolved/rt plagio/DOCBand #2 2 weeks)Jordan-4> >> > i Everyone,> > > > I have been lurking and

posting every now and again for the past > few > > weeks, but I haven't had the chance to introduce myself. My son > Ethan > > was diagnosed with torticollis at 2 months old and we've been in > PT > > 3x/week ever since. (Ethan will be 6mo's at the end of June) He > had > > plagio at that time, and we started repositioning. At his 4 month > ped > > visit our dr sent us to CT in Paramus. He measured 16mm asymmetry > (a > > moderate case, but complicated by the tort). Before CT would make > a > > band for Ethan we had to have an MRI done because he has > an "atypical > > buldge" in the back/side of his head. The MRI was completed - and > the > > plates were not fused, totally normal. We went ahead with the > band. > > Ethan has been in the band for just over 2 weeks and we

can't get > a > > good fit. The band has some freeplay (I guess this is normal), > but it > > gets stuck on the other side of the buldge and never moves back. > Today > > we took more photos and a new DSI (he was casted originally), so > that > > Jeanie in AZ could make him a new band herself. I just got a call > and > > Jeanie is not sure that a band can be made for Ethan. They want > Ethan > > out of the band, hoping not to cause "the good side" to mold > > incorrectly as a result of an ill fitting band. I should hear > tomorrow > > as to whether or not CT/Jeanie can make a band for Ethan. > > > > OK, thanks for reading that long intro. I have found a wealth of > > information and support on this forum and I am hoping to tap into > it > > again. Honestly I am

freaking out!!! If CT can't make a band I > don't > > know what my options are. CT told me that I would have to go to a > > craniofacial specialist. Has anyone ever had a similar > situation? Can > > anyone recommend a craniofacial specialist in the NY metro area > (we are > > in Orange Co, NY - so Westchester, Rockland and Bergen Counties > are > > best - Manhattan is certainly not out of the question though). If > CT > > can't make a band does anyone know what the alternatives are? I > am > > assuming that if CT can't do it Star and Hanger would also not be > able -> > is that a good assumption?> > > > Also, I am a little confused b/c Ethan's head has been improving > (in > > just 2 weeks). Has anyone had this happen with CT and did you get > a > > refund?

We had to pay out of pocket and if this isn't the answer > I > > could use that $ to pay for a viable solution.> > > > Thanks for reading and sharing your knowledge. Oh and Ethan > hasn't > > slept through the night since he got the band and I AM TIRED, so > that > > may be part of why I am freaking out :-)> > > > Audra > > Mom to Ethan (5 1/2mo's) and andria (3 years)> >>