RE: Re: Going to a specialist without a referral

[Guest guest]

Hi ,

I did mean Eastern Cranial Affiliates. It was a mistake on my part (I am also going to see Cranial Technologies today).

As for the helmets, besides the fact that you friend was happy with the results and that her doctor recommended ECA, why did she chose ECA over CT? I read somewhere on the ECA website that although they say that the CT helmet is active that there is no such thing. Both helmets are passive in the sense that neither one of them moves on its own.

I am really curious to know what is the difference between the two in every aspect. Also, how old was your friend's baby when he got his, how severe was his plagio and how long did he have to wear it?

Thanks,

Leila

PS: It's too bad that the ECA in Long Island, NY closed. I am going to the CT in ndale, VA and the ECA in Falls Church, VA. Fortunately, unlike many other posters here it's only a 20-30 mn drive from home. Good luck to you baby boys.

From: juliapianony <juliapianony@...>Subject: Re: Going to a specialist without a referralPlagiocephaly Date: Wednesday, June 18, 2008, 1:42 AM

Hi Leila,Do you mean "Eastern Cranial Affiliates"?I heard good things about Eastern Cranial Affiliates. And when I wasdoing my research, I saw some good reviews, too. I have a friend whogot the helmet from Eastern Cranial Affiliates for her baby boy andshe is extremely pleased with the correction she saw. Herneurosurgeon in midtown Manhattan referred her to Eastern CranialAffiliates and told her that their helmet is better than the DOCBand.They used to have a branch office in Long Island, NY. Unfortunatelythey closed it down in February, 2008. If it weren't for that, wewould've gone there for treatment month ago.It seems to me that most people in this group (including myself) go toCT for treatment. So far I haven't seen any negative reviews aboutCT. We'll be getting our DOC Bands next week. Mother of 10 months old twin boys, NJ>> Hi everybody,> > I am brand new to this group and the reason I joined is because I > feel that my little 5 months old daughter needs a helmet to correct > her Plagiocephaly. We've noticed it when she was about 1 and 1/2 > month old and also noticed that her head was titled and constantly > turned to the right.> > At her 2 months old visit, the doctor gave us some neck streching > exercises to do at home and told us to reposition her to her left > side when she slept. She also said that her head would round up > eventually.> > At her 4 months old visit, another doctor just says the same thing, > not to worry that it will round up. In the meantime, although her > head shape has changed

since the first time we've noticed it, it is > not round at all and her head still tilts slightly to the right, > never to the left.> > I am tired of waiting and not really seeing any improvement. We were > not even referred to a PT to treat her torticollis even less a > specialist in helmets. Therefore, I schedule my own.> > My first appointment is this Wednesday with Cranial Technologies in > ndale. We are also checking Eastern Cranial Technologies in > Falls Church next Wednesday.> > What worries me is that she doesn't qualify for helmet. I have a > hard time measuring her from the nose to the left and right ear. > There doesn't seem to be more than 5mm difference, yet, the right > back side of her head is flat...> > Also, does the helmet correct the torticollis? Has anybody gone to > both CT and ECA and preferred one over

the other?> > Please help me figure out what to do before it's too late.> > Thanks,> Leila>

[Guest guest]

Just a clarification -- "active" means that the band/helmet itself is using gentle pressure ("holding places" as it were) to gently make the head go into another direction. For example, a bossed forehead would have a "holding place" which pushes on it to help the bossing go away, the flat area will have an open space, and the head would grow in that direction. The "pressure" (at least in terms of the DOCband) is no more than laying on a firm matress, but it is a pressure of sorts. It's true that the orthotist needs to be a part of this process, but, by definition (at least by DOCband definition -- which stands for dynamic orthotic cranioplasty), it is the band that is helping the head reshape. The FDA needed to approve these devices -- which they did for Cranial Technologies first, (and other companies followed with their own approval).A passive band doesn't exert this force on the areas that need additional c

orrecting, it merely allows the head to grow into its form which does not change. There may or may not be as much correction in terms of areas that are bossed, etc. with this type of treatment, but it can be effective, though it may take longer.mom to Quinn, born 11/99, DOCband grad 10/00>------- Original Message ------->From : [mailto:nwilkens2275@...]>Sent : 6/18/2008 8:01:02 AM>To : Plagiocephaly >Cc : >Subject : RE: Re: Going to a specialist without a referral>>Hi Leila-I just wanted to chime in that I went to a specialist without telling my ped, and I did feel awkward about it at first but she ended up being understanding and supportive. And if she hadn't been, I would have found another ped.I go to CT in Charlotte and would recommend the c

ompany to anyone. I have never heard of ECA before. What helmet do they use? And is it FDA approved? It concerns me when other orthos refer to the DOCBand and similar bands as "passive." The definition of an active band is that there is an applied pressure to the prominent areas to hold them in place and allow for growth in the flat areas. Adjustments are made to the active band periodically to open up more space for the flat areas to grow. A passive band is a simple shell helmet that you place on the baby's head and basically forget about for a few months until the head has grown into the shape of that helmet. No, the helmets don't move on their own, but that's not what "active" means in this case. It has more to do with the job of the ortho, whether they take an active role or passive role in the reshaping of the head. I don't like when they use the terminology incorrectly, especially when they are speaking for a helm

et that is not their own. That's just my two cents. It's good that you're going to both places for evals to get a feel for which one you like best. I would just check on the FDA approval and ask ECA to see some before and after photos, and/or to get a referral of one of their patients.Good luck!Jake-21m (tort resolved/rt plagio/DOCBand #2 2 weeks)Jordan-4> >> > Hi everybody,> > > > I am brand new to this group and the reason I joined is because I > > feel that my little 5 months old daughter needs a helmet to correct > > her Plagiocephaly. We've noticed it when she was about 1 and 1/2 > > month old and also noticed that her head was titled and constantly > > turned to the right.> > > > At her 2 months old visit, the doctor gave us some neck streching > > exercises to do at home and told us to reposition her to her left > > side when she slept. She also said that her head would round up > > eventually.> > > > At her 4 months old visit, another doctor just says the same thing, > > not to wor

ry that it will round up. In the meantime, although her > > head shape has changed since the first time we've noticed it, it is > > not round at all and her head still tilts slightly to the right, > > never to the left.> > > > I am tired of waiting and not really seeing any improvement. We were > > not even referred to a PT to treat her torticollis even less a > > specialist in helmets. Therefore, I schedule my own.> > > > My first appointment is this Wednesday with Cranial Technologies in > > ndale. We are also checking Eastern Cranial Technologies in > > Falls Church next Wednesday.> > > > What worries me is that she doesn't qualify for helmet. I have a > > hard time measuring her from the nose to the left and right ear. > > There doesn't seem to be more than 5mm difference, yet, the right > &gt

; back side of her head is flat...> > > > Also, does the helmet correct the torticollis? Has anybody gone to > > both CT and ECA and preferred one over the other?> > > > Please help me figure out what to do before it's too late.> > > > Thanks,> > Leila> >>------------------------------------For more plagio info

[Guest guest]

, thanks for the reply. I went back to the ECA website and here is what they say about the active/passive types of helmets: http://www.infinitetech.org/eca/whyuse.htm

Also, here is what they say in regards to the FDA:

2) Has the orthosis that you are recommending for my child received 510(k) clearance from the FDA?

Yes. Our CO (cranioplasty orthosis) has received clearance (K020448). the Director of Orthotics for ECA is an independent researcher and 510(k) proposal writer for orthotists pursuing clearance.

From: <nwilkens2275@...>Subject: Re: Going to a specialist without a referralPlagiocephaly Date: Wednesday, June 18, 2008, 8:01 AM

Hi Leila-I just wanted to chime in that I went to a specialist without telling my ped, and I did feel awkward about it at first but she ended up being understanding and supportive. And if she hadn't been, I would have found another ped.I go to CT in Charlotte and would recommend the company to anyone. I have never heard of ECA before. What helmet do they use? And is it FDA approved? It concerns me when other orthos refer to the DOCBand and similar bands as "passive." The definition of an active band is that there is an applied pressure to the prominent areas to hold them in place and allow for growth in the flat areas. Adjustments are made to the active band periodically to open up more space for the flat areas to grow. A passive band is a simple shell helmet that you place on the baby's head and basically forget about for a few months until the head has grown into the shape of that helmet.

No, the helmets don't move on their own, but that's not what "active" means in this case. It has more to do with the job of the ortho, whether they take an active role or passive role in the reshaping of the head. I don't like when they use the terminology incorrectly, especially when they are speaking for a helmet that is not their own. That's just my two cents. It's good that you're going to both places for evals to get a feel for which one you like best. I would just check on the FDA approval and ask ECA to see some before and after photos, and/or to get a referral of one of their patients.Good luck!Jake-21m (tort resolved/rt plagio/DOCBand #2 2 weeks)Jordan-4> >> > Hi everybody,> > > > I am brand new to this group and the reason I joined is because I > > feel that my little 5 months old daughter needs a helmet to correct

> > her Plagiocephaly. We've noticed it when she was about 1 and 1/2 > > month old and also noticed that her head was titled and constantly > > turned to the right.> > > > At her 2 months old visit, the doctor gave us some neck streching > > exercises to do at home and told us to reposition her to her left > > side when she slept. She also said that her head would round up > > eventually.> > > > At her 4 months old visit, another doctor just says the same thing, > > not to worry that it will round up. In the meantime, although her > > head shape has changed since the first time we've noticed it, it is > > not round at all and her head still tilts slightly to the right, > > never to the left.> > > > I am tired of waiting and not really seeing any improvement. We were

> > not even referred to a PT to treat her torticollis even less a > > specialist in helmets. Therefore, I schedule my own.> > > > My first appointment is this Wednesday with Cranial Technologies in > > ndale. We are also checking Eastern Cranial Technologies in > > Falls Church next Wednesday.> > > > What worries me is that she doesn't qualify for helmet. I have a > > hard time measuring her from the nose to the left and right ear. > > There doesn't seem to be more than 5mm difference, yet, the right > > back side of her head is flat...> > > > Also, does the helmet correct the torticollis? Has anybody gone to > > both CT and ECA and preferred one over the other?> > > > Please help me figure out what to do before it's too late.> > > > Thanks,> >

Leila> >>

[Guest guest]

No, it wasn't dumb, there's been a lot of talk lately on how important an ortho is in this whole process. And that's true and valid! An inexperienced ortho can really make the outcome a positive one, or not.But the OP statement about ECA saying there is "no such thing" as an active band is why I posted. In our experience we actually got a slope from the DOCband for scaphocephalic/dolchiocephalic (long and narrow) head shape (as well as other corrections) (our son's head jutted straight back) -- which just would not have happened with a "passive" band. So when companies/doctors say there's no such thing as an active band I tend to chime in more. :-)>------- Original Message ------->From : [mailto:nwilkens2275@...]>Sent : 6/18/2008 7:25:55 PM>To : Plagiocephaly >Cc : >Subject : RE: Re: Going to a specialist without a referral>>Yeah, that was a dumb thing for me to say. I know better than that. My frustration was speaking for me (I was grasping for another example of how the definition could be applied). Forget I said anything about the ortho's role.Jake-21m (tort resolved/rt plagio/DOCBand #2 2 weeks)Jordan-4> > >> > > Hi everybody,> > > > > > I am brand new to this group and the reason I joined is because > I > > > feel that my little 5 months old daughter needs a helmet to > correct > > > her Plagiocephaly. We've noticed it when she was about 1 and 1/2 > > > month old and also noticed that her head was titled and > constantly > > > turned to the right.> > > > > > At her 2 months old visit, the doctor gave us some neck > streching > > > exercises to do at home and told us to reposition her to her > left > > > side when she slept. She also said that her head would round up > &g

t; > eventually.> > > > > > At her 4 months old visit, another doctor just says the same > thing, > > > not to worry that it will round up. In the meantime, although > her > > > head shape has changed since the first time we've noticed it, it > is > > > not round at all and her head still tilts slightly to the right, > > > never to the left.> > > > > > I am tired of waiting and not really seeing any improvement. We > were > > > not even referred to a PT to treat her torticollis even less a > > > specialist in helmets. Therefore, I schedule my own.> > > > > > My first appointment is this Wednesday with Cranial Technologies > in > > > ndale. We are also checking Eastern Cranial Technologies in > > > Falls Church next Wednesday.> gt; > > > > What worries me is that she doesn't qualify for helmet. I have a > > > hard time measuring her from the nose to the left and right ear. > > > There doesn't seem to be more than 5mm difference, yet, the > right > > > back side of her head is flat...> > > > > > Also, does the helmet correct the torticollis? Has anybody gone > to > > > both CT and ECA and preferred one over the other?> > > > > > Please help me figure out what to do before it's too late.> > > > > > Thanks,> > > Leila> > >> >> > > > ------------------------------------> > For more plagio info