Re: My first visit to neurologist

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In a message dated 6/17/2002 11:03:07 PM Eastern Standard Time, mjl_2@... writes:

The neurologist says he used to see these cases only occassionally,

and now he sees 7-15 cases per week. So could it be that this is a

new problem for which the solution: the helmet - is just so new that

doctors are tenative because they are inexperienced?

Well..it is true that this is all pretty new....ever since they said to put babies to sleep on their backs....more and more babies have flat heads. When people used to put babies to sleep on their tummys, there weren't many cases at all. But the risk of SIDS is higher....and a lot more dangerous..so i'll take the flat head (which can be corrected) rather than the risk of SIDS. The specialist i took to see said that he used to also only see a case here and there, but since putting babies to sleep on their backs...he's seen lots and lots of cases.

You are probably right in that it is all pretty new that some dr's don't think the helmet is necessary. hasn't gotten his helmet yet..so i can't answer you for sure that it works..but from the research i have done...it seems like it works.

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In a message dated 6/17/2002 11:03:07 PM Eastern Daylight Time, mjl_2@... writes:

The Dr. flat out said "No, I would not recommend a

helmet. I never have and I never will." Basically he feels that no

one has a perfectly shaped head and that it should improve from

these months onward. He says that the helmets are 'a product of

american enterprise'. He says that there has been no medical

evidence to prove that these helmets work.

Doctor, Doctor, Doctor, I say, have you really looked for proof, or have you seen any before and after pics?? Or are you just so all-knowing that your OPINION is the best approach to medicine? Pictures speak volumes, and in our case, the helmet helped facial asymmetry and ear misalignment. Do yourselves a favor and check out www.cranialtech.com to check out before and after pics. I know of many cases where the "should" did not happen to round out- so why waste precious time to say, oops, it didn't happen like it SHOULD have.

I asked the Dr whether he usually sees patients after this initial visit. He says no. How the heck does he know that these babies heads round out then?

I think you just answered your own question- he doesn't- he has no idea truthfully and he would rather snow you than do some homework. Watch out for this one. In one breath he says there is no evidence that these helmets work, in the next he's telling you he sees patients once? How in the heck does he know anything about anything if he doesn't even have follow-up visits? Perhaps the lawsuit where the couple sued, and WON, in NJ because a Doctor ignored signs of plagio and waited too late for correction would interest him. Apparently, a judge found some validity to the case and they were awarded a million I think.

The neurologist says he used to see these cases only occassionally,

and now he sees 7-15 cases per week. So could it be that this is a

new problem for which the solution: the helmet - is just so new that

doctors are tenative because they are inexperienced?

I think so. It seems that this is relatively new because there is more of an epidemic, so more Doctors and less specialists are being involved with plagio- especially as the Back To Sleep Campaign continues. It is sad though that 7-15 patients of his are getting misleading information. My ped also said those same things, and I went against her advice, mostly due to the experience of parents here, and got that referral for a DOC band. Do you know how many times after all this is over she has said it was the right thing to do? How great his head looks? At EVERY checkup since! Your best bet in this circumstance, since Docs are still pretty green and would rather wait it out than order what they deem as a bulky, uncomfortable device (not true), is to do your own homework, and look into the links in the database for some Docs in your area for a second opinion. For sure don't let this Doctor make or break your decision, I wouldn't put any ounce of trust in his medical, "professional" opinion.

I would love to get this guys name and send him a ton of info! I recall a Dad online that armed himself to the teeth and challenged every shred of wrong information the Doc gave him- he said the Doc was stammering by the time he was done. So, its important for you to know that alot of us have come up against some head strong, not willing to learn new tricks Doctors that are ready to use their own opinions as professional advice before really checking into the matter. Do it yourself and then decide what your best course of action is- it was hard for me to go against my ped- but I knew she was off base on a few things (said the ear misalignment was an optical illusion), so go with your gut, you are your child's best advocate. Sorry this sounds so mad, but he really got me! Good luck and please get a second opinion! keep us posted!

' Mom

[Guest guest]

Hi

I am originally from the UK. I noticed my seconds son head flattening at age

3months. I had to wait 4months for an appointment to see a ped. I was then

told the usually it will round out in time but may take 18months to 2

years!! Well i had been doing research and asked about the helmets and he

just said the NHS does not do anything and told me to come back in 3 months

if i was still concerned!! Well at that time i was emmigrating to

Calgary,Canada.

Dylan got a viral infection so i went to a walk in clinic and while i was

there the Doctor mentioned Dylans head and i was referred to the Childrens

hospital within 2 weeks. Dylan was diagnosed as very severe and the doctor

advised me to get the DOCband as he said Dylan also had facial assymentry. I

went ahead and got Dylan cast he started it at age 8 months and he went into

a second band at 1year (i knew from the start that Dylan would have to have

2 bands). So far we have had 75percent correction. I am very happy i did go

ahead with the band as i was told that for Dylan normal growth would not

correct it and Dylan without the DOCband would be " grossly deformed " !! Those

were the actual words from the doctor when Dylan was 1 year old, he was very

pleased with the correction we had had so far at that time.

Dylan is 16months now and still in the second band i don't regret it at all.

I am just lucky that we got the help i dread to think what would have

happened if i had stayed in the UK and listen to that doctor. From Dylans 2

headsicles you can see the correction. So i have proof that the helmet has

worked.

I wish you the best of luck and you just go with your gut feelings.

Best wishes

Kerry - Marcus (3) Dylan in second DOCband (16months)

Calgary,AB

>From: " mjl_2 " <mjl_2@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: My first visit to neurologist

>Date: Tue, 18 Jun 2002 03:02:23 -0000

>

>Hello there,

>

>Today my husband and I went to see a neurologist. It didn't go as

>we expected in that he was totally against the helmet. We were told

>what we already knew, that our baby had plagiocephaly. Since we've

>educated ourselves about the helmet, we asked the doctor about

>getting one. The Dr. flat out said " No, I would not recommend a

>helmet. I never have and I never will. " Basically he feels that no

>one has a perfectly shaped head and that it should improve from

>these months onward. He says that the helmets are 'a product of

>american enterprise'. He says that there has been no medical

>evidence to prove that these helmets work. Dr. H says that most

>insurance co.s will not provide coverage because it is not medically

>necessary. He wonders why these helmet making companies have not

>commissioned any studies because if they are so good, it could only

>benefit them? He insinuated that it might be possible that they

>have but the results are not favorable - like tobacco companies.

>What I am feeling now is that I don't know if or how I should pursue

>this. Gosh, I was so sure about getting the helmet and now I find

>myself backing away. I don't want to have any regrets next year and

>for the rest of his life. I asked the Dr whether he usually sees

>patients after this initial visit. He says no. How the heck does

>he know that these babies heads round out then? There must be many

>of you who have had difficulty getting the helmet. I am from

>Toronto, Canada and I anticipate more difficult getting one here.

>

>The neurologist says he used to see these cases only occassionally,

>and now he sees 7-15 cases per week. So could it be that this is a

>new problem for which the solution: the helmet - is just so new that

>doctors are tenative because they are inexperienced?

>

>Truth is, I'm not sure what to do now.

>

>

>(mom to Kale)

>

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[Guest guest]

,

Your story could be my story! This pathetic excuse for a doctor should

have his license taken away. My neuro. said the exact same things. We

went to him at 4 mo. and Amy just now was banded at 13 mo. It doesn't

get any rounder you idiots. Sorry, venting. Get your little sweetheart

to a Cranial Tech office to see someone who knows what they are talking

about. Try cranialtech.com. You can then opt for a less expensive band

if you choose to pursue it. We almost did nothing but then I found the

cappskids.org website. We will NEVER regret the decision to band, and we

know we won't see 100% correction. Consider too, if there are ear

alignment and facial asymmetry issues...see a cranial facial surgeon, or

at least find someone who is positive towards banding, then make a

decision!

Ellen (Mom to Amy)

New Jersey

On Tue, 18 Jun 2002 03:02:23 -0000 " mjl_2 " <mjl_2@...> writes:

> Hello there,

>

> Today my husband and I went to see a neurologist. It didn't go as

> we expected in that he was totally against the helmet. We were told

>

> what we already knew, that our baby had plagiocephaly. Since we've

> educated ourselves about the helmet, we asked the doctor about

> getting one. The Dr. flat out said " No, I would not recommend a

> helmet. I never have and I never will. " Basically he feels that no

>

> one has a perfectly shaped head and that it should improve from

> these months onward. He says that the helmets are 'a product of

> american enterprise'. He says that there has been no medical

> evidence to prove that these helmets work. Dr. H says that most

> insurance co.s will not provide coverage because it is not medically

>

> necessary. He wonders why these helmet making companies have not

> commissioned any studies because if they are so good, it could only

> benefit them? He insinuated that it might be possible that they

> have but the results are not favorable - like tobacco companies.

> What I am feeling now is that I don't know if or how I should pursue

>

> this. Gosh, I was so sure about getting the helmet and now I find

> myself backing away. I don't want to have any regrets next year and

> for the rest of his life. I asked the Dr whether he usually sees

> patients after this initial visit. He says no. How the heck does

> he know that these babies heads round out then? There must be many

> of you who have had difficulty getting the helmet. I am from

> Toronto, Canada and I anticipate more difficult getting one here.

>

> The neurologist says he used to see these cases only occassionally,

> and now he sees 7-15 cases per week. So could it be that this is a

> new problem for which the solution: the helmet - is just so new that

>

> doctors are tenative because they are inexperienced?

>

> Truth is, I'm not sure what to do now.

>

>

> (mom to Kale)

>

>

>

[Guest guest]

Oh :

I'm so sorry you had such a lousy Dr. appt.. I can tell you from my

personal experience, and my 1.5+ yrs I've been a member of this great

group, the helmets & bands DO work. My daughter's plagio was severe,

she began her DOCband treatment at 11.5 mos with 50-60% correction

which I'm thrilled with. Abby graduated almost 1 yr ago (6/22/01) and

her head has not improved at all since graduation.

This of course all depends on the child's severity, age, etc..

Did you go to Toronto's Sick Kids Hospital? I know a few members

have their babies in their helmets currently.

SO many Drs & specialists don't believe in helmet therapy. I don't

know why, it drives me nutz! I was fortunate to have both a great

ped. & neuro (even though I didn't like him!) who believed in " helmet

therapy " .

The bottom line is, this is YOUR decision to make. Go with what your

gut tells you to do.....if this specialist won't write you an rx,

then see another one who will if that's what YOU want to do.

I hope someone from Toronto can offer you more help & names.

Please keep us updated.

Debbie Abby's mom DOCGrad

MI

>

> >From: " mjl_2 " <mjl_2@y...>

> >Reply-Plagiocephaly@y...

> >Plagiocephaly@y...

> >Subject: My first visit to neurologist

> >Date: Tue, 18 Jun 2002 03:02:23 -0000

> >

> >Hello there,

> >

> >Today my husband and I went to see a neurologist. It didn't go as

> >we expected in that he was totally against the helmet. We were

told

> >what we already knew, that our baby had plagiocephaly. Since we've

> >educated ourselves about the helmet, we asked the doctor about

> >getting one. The Dr. flat out said " No, I would not recommend a

> >helmet. I never have and I never will. " Basically he feels that

no

> >one has a perfectly shaped head and that it should improve from

> >these months onward. He says that the helmets are 'a product of

> >american enterprise'. He says that there has been no medical

> >evidence to prove that these helmets work. Dr. H says that most

> >insurance co.s will not provide coverage because it is not

medically

> >necessary. He wonders why these helmet making companies have not

> >commissioned any studies because if they are so good, it could only

> >benefit them? He insinuated that it might be possible that they

> >have but the results are not favorable - like tobacco companies.

> >What I am feeling now is that I don't know if or how I should

pursue

> >this. Gosh, I was so sure about getting the helmet and now I find

> >myself backing away. I don't want to have any regrets next year and

> >for the rest of his life. I asked the Dr whether he usually sees

> >patients after this initial visit. He says no. How the heck does

> >he know that these babies heads round out then? There must be many

> >of you who have had difficulty getting the helmet. I am from

> >Toronto, Canada and I anticipate more difficult getting one here.

> >

> >The neurologist says he used to see these cases only occassionally,

> >and now he sees 7-15 cases per week. So could it be that this is a

> >new problem for which the solution: the helmet - is just so new

that

> >doctors are tenative because they are inexperienced?

> >

> >Truth is, I'm not sure what to do now.

> >

> >

> >(mom to Kale)

> >

>

>

>

>

> _________________________________________________________________

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