Re: New here . . . diagnosis and protocol questions

[Guest guest]

I totally agree with what you are saying. I actually resisted going

to a orthotics place for the same fear that I would be sold into

something that wasnt necessary (because that is their job). We saw a

specialist first at a rehabilitation hospital to be evaluated for

plagio before going up to the orthotics office. I insisted on being

seen by a cranial facial surgeon for his opinion on my sons head

before going to see the orthotics specialist. All 3 of our sources

agreed on therapy, so we went ahead. We get our band this coming friday.

I dont know of any way to get that peace you need on therapy without

seeing as many doctors as you can. Everyone should get a second

opinion on all medical conditions I feel (and I work in a medical

field- pharmacy!) This is no different. If you think tort is the key

in your childs head then it needs to be treated with physical therapy-

from what I have read.

Good luck in your search for an answer.

>

> Hello all. I am so glad to find this message board. I am glad to

> know that other people have been through this or are going through it

> as well. I hope you all have some insight to share

>

> We started noticing that my son was developing a flat spot on his

> left side. We asked the pediatrician about it at his 2 month

> checkup, and he suggested some repositioning techniques, putting toys

> on the other side of him, etc. We tried this with no luck, and the

> problem has become even more defined. We got him in a little early

> for his 4 month checkup to look into the head flattening further.

> They sent us to Cranial Technologies.

>

> We met with them last week and after meeting with no one that was an

> M.D., they said that our son was a good candidate for the DocBand. I

> felt like I was at the Lasik Eye Center where they just churn people

> in and out all day. It is devestating enough to deal with this, but

> I felt like I had been " sold " to. Has anyone else had this

> experience?

>

> I feel like he has torticollis which no one has actually diagnosed.

> I went straight from my pediatrician to Cranial Technologies who

> basically just sells the bands. There was no doctor involved to give

> a comprehensive approach to the solution. I am feeling like a step

> was skipped.

>

> I have an appointment next week at the Craniofacial Institute next

> week at Medical City Children's Hospital in Dallas. They will do

> xrays, and really look at other possiblities of cause before they

> just slap a " Band " aid on it. I am feeling like if I don't question

> this, then I could band my son without fixing the root of the problem.

>

> I welcome any insight on the diagnosis process that anyone could

> share. It seems to me like a surgeon should diagnose and then send a

> patient to a place like Cranial Tech . . am I wrong?

>

> Thanks for your input!

>

[Guest guest]

Welcome! Your pediatrician recommended you to Cranial Tech (which is

very uncommon, many peds are not so accomodating), so you do have a

doctor involved in the process. However, peds aren't really

specialists when it comes to plagio or the more serious

craniosynostosis, so getting a second opinion definitely could not

hurt, especially with ruling out cranio. I can tell you from

personal experience that surgeons and specialists can sometimes do

more harm than good. We saw a neurosurgeon when my son was 4 months

old and he told us his head would round out on its own, so we

listened to his opinion, assuming he knew what he was talking about.

Additionally, 2 peditricians also told us it would round out. It

wasn't until my son was 16 months old, still with significant

plagio, that I forced the issue and saw a craniofacial surgeon. HE

said he wouldn't band my son because of his age, but did write a

script and said he would defer to the orthotist. Both orthos we saw

said it would be worth banding him, so we did. We chose Cranial Tech

because of their experienece working with older children and their

great reputation as the pioneers in banding. I would recommend them

to anyone and you can feel confident that if you move forward with

banding, you will be in good hands with them (which location did you

visit? we go to Charlotte).

Also, just so you know, any orthotic company that provides helmets

will not be staffed by an MD. They are either orthotists, physical

therapists, or occupational therapists. Some othotists handle other

orthotic and prosthetic devices (artificial limbs, braces, etc.),

while Cranial Tech only does banding (therefore they tend to have

the most experience).

With regards to the torticollis, have you asked your ped about it?

My son's tort was diagnosed by our ped at our 2 month well visit. We

started PT 2 days later and it was resolved within 3 months.

Good luck with the process! Please keep us posted!

Jake-2 (tort resolved/rt plagio/DOCBand #2 14 weeks)

Jordan-4

>

> Hello all. I am so glad to find this message board. I am glad to

> know that other people have been through this or are going through

it

> as well. I hope you all have some insight to share

>

> We started noticing that my son was developing a flat spot on his

> left side. We asked the pediatrician about it at his 2 month

> checkup, and he suggested some repositioning techniques, putting

toys

> on the other side of him, etc. We tried this with no luck, and

the

> problem has become even more defined. We got him in a little

early

> for his 4 month checkup to look into the head flattening further.

> They sent us to Cranial Technologies.

>

> We met with them last week and after meeting with no one that was

an

> M.D., they said that our son was a good candidate for the

DocBand. I

> felt like I was at the Lasik Eye Center where they just churn

people

> in and out all day. It is devestating enough to deal with this,

but

> I felt like I had been " sold " to. Has anyone else had this

> experience?

>

> I feel like he has torticollis which no one has actually

diagnosed.

> I went straight from my pediatrician to Cranial Technologies who

> basically just sells the bands. There was no doctor involved to

give

> a comprehensive approach to the solution. I am feeling like a

step

> was skipped.

>

> I have an appointment next week at the Craniofacial Institute next

> week at Medical City Children's Hospital in Dallas. They will do

> xrays, and really look at other possiblities of cause before they

> just slap a " Band " aid on it. I am feeling like if I don't

question

> this, then I could band my son without fixing the root of the

problem.

>

> I welcome any insight on the diagnosis process that anyone could

> share. It seems to me like a surgeon should diagnose and then

send a

> patient to a place like Cranial Tech . . am I wrong?

>

> Thanks for your input!

>

[Guest guest]

Hello and welcome to the group My daughter wore a starband for brachy

(flat in back, with very little asymmetry). Our ped did refer her to a

specialist, because she wasn't familiar with the treatment. Our

specialist was a cranio facial plastic surgeon. He didn't do any

x-ray, CT scan etc. From his experience he knew it was just mishappen,

not cranio. Cranio (premature fusion of the skull plates) is rare, but

should be ruled out. There are certain head shapes that suggest cranio

vs plagio, and if in doubt a CT is usually done.

So if your ped isn't worried about cranio, it is not unheard of to

band without seeing a specialist. Also there really aren't that many

possible underlying causes if cranio is ruled out. Plagio can be

caused in utero, or from position. Tort is a big contributor to

positional plagio, but in all these cases banding is the best

treatment. However if the tort is present, it also needs to be

treated. I would push your doctor for a referral to a PT experienced

in tort to get an assessment. Tort is often overlooked when it is not

severe.

If you feel that a second opinion is needed, or would make you more

comfortable with the process, then I think it is a good idea. However

I'm not really sure any step was skipped, since it is fairly common to

go from ped to band provider.

In any case I please let us know if you decide to band your child. It

is all very intimidating at first, but it really isn't as bad as it

seems. Babies adjust very quickly, and even we parents come around

eventually :-)

-christine

sydney 2.5 yrs starband grad

>

> Hello all. I am so glad to find this message board. I am glad to

> know that other people have been through this or are going through it

> as well. I hope you all have some insight to share

>

> We started noticing that my son was developing a flat spot on his

> left side. We asked the pediatrician about it at his 2 month

> checkup, and he suggested some repositioning techniques, putting toys

> on the other side of him, etc. We tried this with no luck, and the

> problem has become even more defined. We got him in a little early

> for his 4 month checkup to look into the head flattening further.

> They sent us to Cranial Technologies.

>

> We met with them last week and after meeting with no one that was an

> M.D., they said that our son was a good candidate for the DocBand. I

> felt like I was at the Lasik Eye Center where they just churn people

> in and out all day. It is devestating enough to deal with this, but

> I felt like I had been " sold " to. Has anyone else had this

> experience?

>

> I feel like he has torticollis which no one has actually diagnosed.

> I went straight from my pediatrician to Cranial Technologies who

> basically just sells the bands. There was no doctor involved to give

> a comprehensive approach to the solution. I am feeling like a step

> was skipped.

>

> I have an appointment next week at the Craniofacial Institute next

> week at Medical City Children's Hospital in Dallas. They will do

> xrays, and really look at other possiblities of cause before they

> just slap a " Band " aid on it. I am feeling like if I don't question

> this, then I could band my son without fixing the root of the problem.

>

> I welcome any insight on the diagnosis process that anyone could

> share. It seems to me like a surgeon should diagnose and then send a

> patient to a place like Cranial Tech . . am I wrong?

>

> Thanks for your input!

>