Too many opinions on treatment

[Guest guest]

Our son Brett is 5 months old and has CMT as well as plagio. His

physical therapist sent us for evaluation for a DOC Band and they

were in agreement that he needs one. Our pediatrician does not agree

and is sending us for a second opinion to a neurosurgeon known for

his lack of support for helmuting. We are very frustrated and don't

know what the right answer is. Any help? Michele and

[Guest guest]

Hello and welcome!

What a frustrating situation! In your heart, do you think he needs

the band? Trust your instinct and go with what you want. Some doctors

are just not educated enough on how great the use of a helmet is.

And, if you already know that the neuro is not helmet friendly, you

know what will happen at that appointment, he'll say no as well.

So, you have a tough decision. But, if you go with what YOU believe,

then you will most likely feel more comfortable. It may be better to

try the band versus looking back in a year and wishing you had.

Good luck and keep us posted!

Kim

mom to Kaela (9) and Jaxson 9 mo tort/plagio/craniocap

> Our son Brett is 5 months old and has CMT as well as plagio. His

> physical therapist sent us for evaluation for a DOC Band and they

> were in agreement that he needs one. Our pediatrician does not

agree

> and is sending us for a second opinion to a neurosurgeon known for

> his lack of support for helmuting. We are very frustrated and

don't

> know what the right answer is. Any help? Michele and

[Guest guest]

Hello there

I agree with Kim. Go with your heart and if it is telling you to

get a band then change Peds so you can have an RX for it. CT

usually does not band babies that don't need to have a band. Good

luck

Sandy Willow's Mom CranioGermany Grad

> Our son Brett is 5 months old and has CMT as well as plagio. His

> physical therapist sent us for evaluation for a DOC Band and they

> were in agreement that he needs one. Our pediatrician does not

agree

> and is sending us for a second opinion to a neurosurgeon known for

> his lack of support for helmuting. We are very frustrated and

don't

> know what the right answer is. Any help? Michele and

[Guest guest]

Hi Michele,

If I were you I'd go for the band. Cranial Tech wouldn't recommend

one if he didn't need it and with Brett's age and the tort repoing

will be very difficult. The band is a sure way to a rounded head,

where as w/anything else you'll be taking your chances. Where do you

live? Maybe someone here can give you the name of a band friendly

specialist who would easily give you the script. Either that or

demand one from your ped or switch peds if you have to.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> Our son Brett is 5 months old and has CMT as well as plagio. His

> physical therapist sent us for evaluation for a DOC Band and they

> were in agreement that he needs one. Our pediatrician does not

agree

> and is sending us for a second opinion to a neurosurgeon known for

> his lack of support for helmuting. We are very frustrated and

don't

> know what the right answer is. Any help? Michele and

[Guest guest]

Hi,

Unfortunately there are doctors and specialists that aren't plagio

educated. They usually tell parents that their child's head will

round out on it's own. Some do round out, most don't.

Cranial Technologies are the leaders in treating plagiocephaly. If

they say your son would benefit from a DOCband, then I think you

should band him. I'd bet that the clinician you saw at Cranial Tech

knows more about plagio and it's treatment then your ped and the

neurosurgeon. The window of opportunity to correct plagio isn't a big

one. The younger a baby is banded the better and faster the

correction. The decision whether or not to band is yours to make.

It's not your peds or your specialists decision to make. Good luck

making your decision, please let us know what you decide.

> Our son Brett is 5 months old and has CMT as well as plagio. His

> physical therapist sent us for evaluation for a DOC Band and they

> were in agreement that he needs one. Our pediatrician does not

agree

> and is sending us for a second opinion to a neurosurgeon known for

> his lack of support for helmuting. We are very frustrated and

don't

> know what the right answer is. Any help? Michele and

[Guest guest]

I too was told by my sons ped that he didn't need a band. What do dr's know!! Pisses me off because we trust these people with our children and to give us the proper information. I fought to have my son seen by the craniotech people. I'm so glad I did. Look whats going on now. He needs this band and because of my son's ped's lack of concern hes starting his treatment at 10 months old, rather then at 3 months when I started trying to get him the treatment I KNEW he needed!! Now he may be in his band for many months instead of just a few.

Angie Baclawski

sunnyhaze2974 ----Original Message Follows---- From: "stripes6060" <taime@...> Reply-Plagiocephaly Plagiocephaly Subject: Re: Too many opinions on treatment Date: Fri, 09 Apr 2004 15:03:05 -0000 Hi, Unfortunately there are doctors and specialists that aren't plagio educated. They usually tell parents that their child's head will round out on it's own. Some do round out, most don't. Cranial Technologies are the leaders in treating plagiocephaly. If they say your son would benefit from a DOCband, then I think you should band him. I'd bet that the clinician you saw at Cranial Tech knows more about plagio and it's treatment then your ped and the neurosurgeon. The window of opportunity to correct plagio isn't a big one. The younger a baby is banded the better and faster the correction. The decision whether or not to band is yours to make. It's not your peds or your specialists decision to make. Good luck making your decision, please let us know what you decide. > Our son Brett is 5 months old and has CMT as well as plagio. His > physical therapist sent us for evaluation for a DOC Band and they > were in agreement that he needs one. Our pediatrician does not agree > and is sending us for a second opinion to a neurosurgeon known for > his lack of support for helmuting. We are very frustrated and don't > know what the right answer is. Any help? Michele and MSN 8 with With MSN Premium Get 2 Months FREE*

[Guest guest]

I agree with what everyone else said. You have done everything right,

and since Cranial Tech did recommend a band then that's the final

word, in my opinionn. So many of us have horror stories about

pediatricians who either don't know anything about plagio, or who are

reluctant to do anything about it and say it will fix itself. Either

demand that your ped writes a [prescritiption, or find another one

that will. You could also possibly ask someone in your are who

already has a kid in a DOc band who their doctor is. You are still

doing this while your kid is at a good early age, but don't let the

doctors slow you down, because it only gets harder. Good luck, and

just remember you are doing everything right.

Matt

> Our son Brett is 5 months old and has CMT as well as plagio. His

> physical therapist sent us for evaluation for a DOC Band and they

> were in agreement that he needs one. Our pediatrician does not

agree

> and is sending us for a second opinion to a neurosurgeon known for

> his lack of support for helmuting. We are very frustrated and

don't

> know what the right answer is. Any help? Michele and

[Guest guest]

Michele and ,

I think I answered your question in your previous post " helmet vs.

positioning therapy, " but I wanted to respond to this post also to

tell you that I sympathize with your situation of all the differing

opinions. The industry also sees a need to establishing some

guidelines on evaluation of plagio, and consistency in referral

situaions for banding, repo, or whatever. Guidelines for treatment

have been proposed to the AAP (American Academy of Pediatrics) that

would give further clarification for when to refer a baby for

banding, and under what circumstances. No word yet on when or if

these guidelines will be accepted, and, in turn, recommended. Also,

work is being done to establish a severity assessment chart to be

used by all professionals, which I mentioned in my previous post.

Until then, we are still seeing a very wide range of assessments,

referrals, treatment recommendations, which seem to vary from ped to

ped.

I have read where the Docband will not recommend banding treatment

if it's not necessary, or if they don't think improvement can be

realized. If your ped, nor this neuro will write a prescription,

then you may need to change ped.

When is the appt. with the specialist?

Regards,

Christie (Mom to Repo'd Remy)

> Our son Brett is 5 months old and has CMT as well as plagio. His

> physical therapist sent us for evaluation for a DOC Band and they

> were in agreement that he needs one. Our pediatrician does not

agree

> and is sending us for a second opinion to a neurosurgeon known for

> his lack of support for helmuting. We are very frustrated and

don't

> know what the right answer is. Any help? Michele and

[Guest guest]

I have been following this discussion... I completely agree with everyone's recommendation! My son had torticollis that was overlooked by his first pediatrician. As a first time mother, I knew that he wasn't holding his head quite right, so I made an appt. with a second pediatrician (with better references). The second one diagnosed him with tort and wrote a scipt for PT. At around the time he was 11 weeks old, I noticed a definite flat spot behind his left ear. I read everything I could find and decided that repositioning was the way to go, and I put away the bouncer and swing seats. I repositioned him from the time he was 11 weeks old to the end of his 5th month. I was diligent about keeping him off his flat spot...this included waking up many, many times each night and moving him around... Although the flat spot didn't get worse, it didn't get better. I asked the 2nd ped for a script at my son's 4 month appt, and

during his 5th month, and finally at his 6th month appt. The pediatrician was reluctant to prescribe a helmet. I knew that his head was not rounding out (as I had been told by the ped that it would) after my effort of repositioning. (FYI...He had moderate brachicephaly.) FINALLY, I nearly had to demand a scipt, and the ped did give one at his 6th month appt. My son wears a Hanger helmet. The orthotists at Hanger have been wonderful. No casting, just a scan that correctly measured his head. In a short 6 weeks, his head measured nearly symmetrically...his eyes are equally-sized...his cheeks are equally-sized...his forehead is not protruding and wide. And his head is so round and cute. I absolutely love looking at it, after months of anxiety. Pursuing the helmet was the best thing I have done for him and unquestionably worth the effort. What amazes me still today, is that my pediatrician wanted to wait until my son

was 9 months old before we did anything about it. The waiting game is crazy! Especially when fixing the plagio, at a young age, is so easy and painless! Please don't be frustrated. It takes some work, but you can definitely get your son banded with patience and effort. And it will be so worth it!!! Best of luck to you!

Janelle

Liam, tort, brachi, helmet 2/19/04matthewruiz <matthewruiz@...> wrote:

I agree with what everyone else said. You have done everything right, and since Cranial Tech did recommend a band then that's the final word, in my opinionn. So many of us have horror stories about pediatricians who either don't know anything about plagio, or who are reluctant to do anything about it and say it will fix itself. Either demand that your ped writes a [prescritiption, or find another one that will. You could also possibly ask someone in your are who already has a kid in a DOc band who their doctor is. You are still doing this while your kid is at a good early age, but don't let the doctors slow you down, because it only gets harder. Good luck, and just remember you are doing everything right.Matt> Our son Brett

is 5 months old and has CMT as well as plagio. His > physical therapist sent us for evaluation for a DOC Band and they > were in agreement that he needs one. Our pediatrician does not agree > and is sending us for a second opinion to a neurosurgeon known for > his lack of support for helmuting. We are very frustrated and don't > know what the right answer is. Any help? Michele and For more plagio info