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

[Guest guest]

Jeanie can't make a band for Ethan. She feels that the "mastoid buldge" is growing. Our pediatrician has referred us to the craniofacial center at the Childrens Hosp at Montefiore in the Bronx. Our ped has no idea what lies ahead as he has never referred anyone who hasn't had premature fusing of the sutures.

re:insurance: we have CIGNA and our policy has an explicit exclusion for the band. I read it and can't imagine that they would pay the bill. However, CIGNA has approved it and will cut a check in the next week or so!!! So the message is even with an explicit exclusion (they even told CT it wasn't covered), go for it with CIGNA. Also, CT's policy is not to refund the $ in Ethan's case because they provided a band - the fact that it was not a viable solution is immaterial. They of course will refund my $ because CIGNA has paid.

Does anyone know where I should be looking for more info; is there another board that might have more answers or is my little Ethan just that /unique (as his Mom I always suspected so! :-))

Thanks for any insight/suggestions

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)>

[Guest guest]

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)

> >

>