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

[Guest guest]

Hi Audra,

it does sound a bit unusual, but i know Jeanie does hand design bands

for heads that are tough. I think she used to design all the bands

until they basically captured her process in the computer software. I

don't think the other band makers (star and hanger) customize things

to the same extent. I have never heard of the band getting stuck on a

bump. I don't really know what a cranio facial specialist would do

either, so I can understand your being frustrated. It seems to me that

other bands would have the same problem, but I guess you could find

another experienced ortho in our area and go for a consult.

Please do update us with what they say about Ethan's head, and if they

can make a band to fit properly.

Good luck with all of this, and I hope you'll get some sleep soon :-)

-christine

sydney 2 yrs starband grad

>

> 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 would have to say if Jeanne can't make you a band for Ethan that

fits, than probably no one can (in my opinion). She is the CEO of CT

and the creator of the DOCBand herself (which was the first helmet

ever approved by the FDA - but not just approved, they actually

created a special category for it - which made it a lot easier for

other companies to follow suit). Some of the design/manufacturing

process at CT is digitalized now, but she does still hand design

bands for special cases. If she is working on Ethan's case, she will

be able to either find a way to make it work, or she'll tell you

straight that she can't. At least in that respect, I would feel

really good/confident about her working on your special situation.

Also, the DSi will hopefully make a difference in getting a good fit

over the casting (not that castings aren't accurate, but maybe in

this circumstance, the DSi will be better).

I'm guessing they are recommending seeing a craniofacial surgeon to

get an opinion on what is the cause of the " atypical bulge " and if

the band will do any good (and if not, what other options there

are...the only one I can think of would be surgery which can be done

for severe cases of plagio that can't be helped by a band, but I

would hope it wouldn't come to that). Did you post pictures already

or can you? I would be interested to see exactly what you're talking

about.

PLEASE let us know what Jeanne says and keep us posted on Ethan's

story. Best of luck with everthing!

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)

>

[Guest guest]

Hi All,

I have posted photo's of Ethan's head - Ethan C. I managed to do it twice and I can't figure out how to delete the second set - sorry. Can anyone fix this?

The first photo is deceptive b/c it looks like he is in a tort bend, but he's actually almost fully in midline. The second looks like he has a widening at the base of the skull, but this is actually the "bump" which is shown in the third photo. I looked over the original CT photo's from our initial consult and you really can't see the bump. The DSi showed it beautifully and his original helmet does bulge out in that area.

Whitney is my ortho at CT, I get the feeling that she's new. It may just be that she's new to this bulge. But I am pretty comfortable on that front because both Anse and Purvi have consulted on Ethan's head every time we've been there. I am still waiting to hear what Jeanie has to say. I didn't realize who she is and that also makes me feel that I am in the right place.

I have decided that regardless of what Jeanie says I am going to go to a craniofacial specialist. My confidence has been shaken a bit by all this, I was so sure we were on the right path. So even if Jeanie makes him a new band I want a specialist to look at the head, band and MRI and confirm that we are on the right path. If Jeanie, with her years and weatlth of experience hasn't seen this before or often enough to handle it right off then I feel that I had better dig a little deeper on this one. Once I hear from CT, will consult with my ped and then try to find a craniofacial specialist.

The other odd thing is that in just the 2 weeks that he wore the ill fitting band there has been correction. Now that I have gotten used to the band I am so uncomfortable with him out of it, so I am back to repositioning as much as possible.

Thanks for your thoughts and insight

Audra

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

I would have to say if Jeanne can't make you a band for Ethan that fits, than probably no one can (in my opinion). She is the CEO of CT and the creator of the DOCBand herself (which was the first helmet ever approved by the FDA - but not just approved, they actually created a special category for it - which made it a lot easier for other companies to follow suit). Some of the design/manufacturin g process at CT is digitalized now, but she does still hand design bands for special cases. If she is working on Ethan's case, she will be able to either find a way to make it work, or she'll tell you straight that she can't. At least in that respect, I would feel really good/confident about her working on your special situation. Also, the DSi will hopefully make a difference in getting a good fit over the casting (not that castings aren't accurate, but maybe in this circumstance, the DSi will be better).

I'm guessing they are recommending seeing a craniofacial surgeon to get an opinion on what is the cause of the "atypical bulge" and if the band will do any good (and if not, what other options there are...the only one I can think of would be surgery which can be done for severe cases of plagio that can't be helped by a band, but I would hope it wouldn't come to that). Did you post pictures already or can you? I would be interested to see exactly what you're talking about. PLEASE let us know what Jeanne says and keep us posted on Ethan's story. Best of luck with everthing!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)>