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

[Guest guest]

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)

[Guest guest]

I am sorry to hear they are having trouble making a band for your son. I am not sure if I have heard that before or not. Have you taken any photos of Ethan's headshape? He still could have received some correction. My daughter Jenna wore a STARband and I am not real familiar with CT. BUt I do think that they would refund your money if they can not make the band. I think there are members in your area so hopefully they will chime in with craniofacial specialists in your area. Goos luck and please keep us updated.

Angie

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

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)

[Guest guest]

Audra, I am a bit confused too. Wow what a weird situation. First off, who are you dealing with at Ct in NJ who is the ortho. Who did the molding? why can they not cast your son? I have never heard of this situation. I will inquire in my neck of the woods for a cranio facial specialist. (l am in cental nassau county long island) Please fill us in with the above info. I cant seem to understand it all.

Did you post photos, would love to see what you are seeing. My son went to Ct in NJ and was 15 mm assymetry and corrected almost fully. I was told that 15 mm was moderate to severe so I believe 16mm is severe. I dont see why they can not make a band to fit his head. Tammy

From: audracox <audracox@...>Subject: 2 weeks in a Doc Band and it may not be the answerPlagiocephaly Date: Thursday, June 19, 2008, 10:20 PM

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)