Re: my son

[Guest guest]

Dear ,

I'm the foster mom of a 37 month old boy, also 4# at birth, born with a

bilateral cleft lip and palate. I thought his speech was delayed

because of the palate. We concentrated on PT for his low muscle tone -

he didn't walk until 1-1/2 years. Then we focused on his sensory issues

- my advise...get an OT in to see this little guy ASAP. A qualified OT

will also help you discover the link between sensory integration and

speech. Now we're dismissed from PT and OT but speech therapy (which

has been going on for 2 years now) will apparently continue for some

time. I continue to use " some " sign language and pictures of food items

and activities that he can point to when I'm unable to understand his

limited vocabulary. It's nice to know we're not in this alone!

[Guest guest]

hi

thanks for the email and info. i wish you all the luck with your little guy

and you are right, it IS nice to know that we are not alone. thanks again

[Guest guest]

> > some advice or if they thinks my son sounds like he has apraxia.

My

> appt is not til mid December and it is going to feel like an

eternity

> and I am very concerned

>

Hello, I am currently in your shoes, and the first thing I would do

if at all possible to to run, not walk, to the phone book, or to a

friends, and find the name of another neurologist. Mid December is

such a long time away. And as much as we all hate to admit it, time

lost is just that, time lost. I'm keeping my 3 year old in therapy

even in the summer months. I want to keep things moving. I am

afraid of regression if I don't. But if it isn't possible, just do

the best you can. You did say your child is getting some therapy

now? If you don't feel it is doing anything much, sugest, trying

another technique. There are so many different things to work at in

the speech area. Right now they are working with phonological

aspects on my son, vowels, nuk brush?, vibrating toothbrush? Let us

know how it's going. I'll be thinking of you. CASSIE

[Guest guest]

Oh, one more thing:

Whenever I tried to challenge some of the " canned " answers with my

previous healthcare professionals they would ask where I received my

information. When I answered the Plagiocephaly site on the internet,

they scoffed, laughed at me, cut me off, would not allow me to

continue, and told me " There's alot of misinformation out there on

the internet. Did you know that some people pose as parents/patients

and give false advise? You cannot believe anything you read on the

internet. " I supposed as believing anything anyone in a white coat

tells me????

Good for you that your MD at least would listen and did not cut you

off!

, Rhiannon's mom

> > First, I would like to thank all of you who replied to my initial

> > message. This group and the experiences that come with it are

quite

> > impressive. In the last couple of days I have scrolled the

message

> > archives for hours trying to understand plagiocephaly and develop

> > some sort of strategic approach...and to find some comfort and

> > relief. Thank you all!

> >

> > My son was seen by a neurosurgeon at Kaiser in Sacramento. Within

> 10

> > seconds, he said he could see my son had Plagiocephaly. He

> continued

> > to explain to me the origin, saying it was a benign condition and

> > other than a minor cosmetic challenge my son would enjoy a

> successful

> > life. He highlighted on positional therapy as a very successful

> > treatment and would provide some written material on several

> > techniques. I cannot believe his response. I read the exact

> response

> > in this group, word for word.

> >

> > I let him finish his canned assessment and he asked if I had any

> > questions. I said, yes.

> >

> > I asked about helmets and bands and his thoughts. He said there

> have

> > been some surprising results, but overall, these devices were

high

> > maintenance and could cause sores and most-likely, disappointing

> > results.

> >

> > I told him about all the successes I have read about within this

> > group and other means, and that I would certainly classify the

> > results as genuine and very appealing. I continued to articulate

> that

> > I have chosen the method of treatment I feel best suits my son

and

> > cranial orthosis is it. He looked at my son's head one more time

> and

> > said he would write the referral to Stanford University's

Orthosis

> > department. Kaiser doe's not offer the service directly and

> contracts

> > this type of treatment.

> >

> > YAAAAAAAAAAAAAHHHHHHHHHHOOOOOOOOOOOOOOOOOOO!

> >

> > I pulled out the list of questions I downloaded from

> > WWW.plagiocephaly.org, regarding " questions to ask your Doctor " .

He

> > answered most of them but seemed bewildered at my preparation.

> >

> > I asked him if he conducts CT scans to eliminate the possibility

of

> > craniosynostisis. He was very adimate against exposing my son to

> the

> > radiation. He was very confident that his 22 years as a pediatric

> > neurosurgeon had exposed him to plagiocephaly and he can spot the

> > characteristics instantly. I accepted his answer and decided to

> > comply with his non-recommendation.

> >

> > As for his severity, the doctor said it was mild-moderate, and

that

> > the people at Stanford would give me exact symmetrical

> misalignments.

> > Great!

> >

> > It was very important for me to educate myself ASAP and arm

myself

> > against replies from the medical establishment that align

> themselves

> > with insurance costs. If I would have went to the neurosurgeon

and

> > listened to his initial response I would be treating a moderate

> case

> > of plagiocephaly with repositioning techniques only.

> >

> > Thanks again from all of you for your suggestions / support and

> most

> > importantly, your personal experiences. I will continue to update

> > this group and reply to all who answered my posting. I will post

my

> > pictures of my son's head soon.

> >

> > Thanks,

> > 's Dad,

[Guest guest]

:

Thank you for your response. I must say the nuerosurgeon did scoff

and detach from my internet resources, but he could not minimize or

diminsh the concept of cranial molding. He admitted that the cause of

my son's plagiocephaly was undoubtdly caused from external

pressure...well the converse result should be expected with

controlled and active cranail molding.

If anything, the doctor could sense my non-negotable approach and

probably wanted to get me the he** out of his office.

I wanted to share this experience with the group to demonstrate that

the medical community considers the insurance variable whenever

allowable. As long as the medical community views plagiocephaly as

primarily cosmetic and not nuerologically damaging the insurance

consideration becomes primary.

Again, if it were not for this group and all the invaluable resources

I may have posted a different response tonight.

's dad,

> > > First, I would like to thank all of you who replied to my

initial

> > > message. This group and the experiences that come with it are

> quite

> > > impressive. In the last couple of days I have scrolled the

> message

> > > archives for hours trying to understand plagiocephaly and

develop

> > > some sort of strategic approach...and to find some comfort and

> > > relief. Thank you all!

> > >

> > > My son was seen by a neurosurgeon at Kaiser in Sacramento.

Within

> > 10

> > > seconds, he said he could see my son had Plagiocephaly. He

> > continued

> > > to explain to me the origin, saying it was a benign condition

and

> > > other than a minor cosmetic challenge my son would enjoy a

> > successful

> > > life. He highlighted on positional therapy as a very successful

> > > treatment and would provide some written material on several

> > > techniques. I cannot believe his response. I read the exact

> > response

> > > in this group, word for word.

> > >

> > > I let him finish his canned assessment and he asked if I had

any

> > > questions. I said, yes.

> > >

> > > I asked about helmets and bands and his thoughts. He said there

> > have

> > > been some surprising results, but overall, these devices were

> high

> > > maintenance and could cause sores and most-likely,

disappointing

> > > results.

> > >

> > > I told him about all the successes I have read about within

this

> > > group and other means, and that I would certainly classify the

> > > results as genuine and very appealing. I continued to

articulate

> > that

> > > I have chosen the method of treatment I feel best suits my son

> and

> > > cranial orthosis is it. He looked at my son's head one more

time

> > and

> > > said he would write the referral to Stanford University's

> Orthosis

> > > department. Kaiser doe's not offer the service directly and

> > contracts

> > > this type of treatment.

> > >

> > > YAAAAAAAAAAAAAHHHHHHHHHHOOOOOOOOOOOOOOOOOOO!

> > >

> > > I pulled out the list of questions I downloaded from

> > > WWW.plagiocephaly.org, regarding " questions to ask your

Doctor " .

> He

> > > answered most of them but seemed bewildered at my preparation.

> > >

> > > I asked him if he conducts CT scans to eliminate the

possibility

> of

> > > craniosynostisis. He was very adimate against exposing my son

to

> > the

> > > radiation. He was very confident that his 22 years as a

pediatric

> > > neurosurgeon had exposed him to plagiocephaly and he can spot

the

> > > characteristics instantly. I accepted his answer and decided to

> > > comply with his non-recommendation.

> > >

> > > As for his severity, the doctor said it was mild-moderate, and

> that

> > > the people at Stanford would give me exact symmetrical

> > misalignments.

> > > Great!

> > >

> > > It was very important for me to educate myself ASAP and arm

> myself

> > > against replies from the medical establishment that align

> > themselves

> > > with insurance costs. If I would have went to the neurosurgeon

> and

> > > listened to his initial response I would be treating a moderate

> > case

> > > of plagiocephaly with repositioning techniques only.

> > >

> > > Thanks again from all of you for your suggestions / support and

> > most

> > > importantly, your personal experiences. I will continue to

update

> > > this group and reply to all who answered my posting. I will

post

> my

> > > pictures of my son's head soon.

> > >

> > > Thanks,

> > > 's Dad,

[Guest guest]

,

I am so glad you went armed to the teeth to the specialist and was as

informed if not more about plagio so that you could rebuff any and all issues

that did not sit well with your " internet education " . My ped was the same

way when I told her how much I had learned from other parents online. She

said to be very leary because many people give you the worst case scenario

and it may not apply to my case- well- I am not an idiot and I think I can be

the best judge of what applies and what does not. My neuro was actually

impressed that I could learn so much online, and thought it was great. He

even said that some Doctors are not happy with people getting an education

online, but he felt it was great. If I had not found this great group of

experienced parents, perhaps I would not have pushed for that referral

myself. I have learned not to be so trusting with Doctors and to always take

matters into my own hands. I would have loved being there when you asked him

all those questions!! Good for you Dad! I am sure you will see great

results as is still quite young enough for great growth spurts. My son

wore his DOC band from 5-8 months, and we no longer have issues with

facial asymmetry and ear misalignment. If has tort however, be sure

that you address this with daily pt. Please email me if I can help you in

anyway! Good luck to you all and please keep us posted!

' Mom

[Guest guest]

,

Scary isn't it- they make you sign a form that this shot could cause brain

hemmorage, or death, convulsions, but the chances are slim, so go ahead and

sign here- WELL- what if my child is the slim chance???? Always a dilemma

there!

[Guest guest]

Hi :

Yes, you are right. The insurance consideration does become an

important variable. Thank you for sharing your experience -

hopefully it will help others.

In my situation, the huge considering factor was the type of band -

local passive versus active DOC band. Unfortunately, the local

passive was not a good option for my daughter as she has severe

plagio from inter-uterine constriction coupled with her torticollis

issues. So, very stubborn plagio. The surgeon himself said

that " some kids just don't respond to treatment - they are too

deformed. In those cases we just quit using the helmet. " but my

thoughts, in retrospect, are that those kids need the active bands.

Passive bands just don't provide the required pressure. As this doc

was the local band co-creator, my feeling is that he is too attached

to his product to be able to make the necessary referrals for better

products when necessary. Unfortunate situation for the kids that

need it most and do not know about the active bands.

Again, thanks for your info. I now have another tactic in my bag of

tricks to help me out when necessary. My next battle is that of

innoculations. The last series left my baby with a rash, and I am

nervous about allergic reactions. Already I have received the canned

responses, and am about fit to be tied. I might have to not let her

receive the shots for a while in order to protect her from death or

serious injury, and the consensus out there is that " shots don't hurt

anyone - well ALMOST no-one, there are some that die, suffer brain

damage, stop breathing, etc. due to allergies, but that is rare " . Of

course, now that my child had a rash after the last series, they are

trying to tell me that I must have changed laundry detergent and

don't remember it. So much for scientific evidence.

Well, time to get organized for my day. Take care,

, Rhiannon's mom

> > > > First, I would like to thank all of you who replied to my

> initial

> > > > message. This group and the experiences that come with it are

> > quite

> > > > impressive. In the last couple of days I have scrolled the

> > message

> > > > archives for hours trying to understand plagiocephaly and

> develop

> > > > some sort of strategic approach...and to find some comfort

and

> > > > relief. Thank you all!

> > > >

> > > > My son was seen by a neurosurgeon at Kaiser in Sacramento.

> Within

> > > 10

> > > > seconds, he said he could see my son had Plagiocephaly. He

> > > continued

> > > > to explain to me the origin, saying it was a benign condition

> and

> > > > other than a minor cosmetic challenge my son would enjoy a

> > > successful

> > > > life. He highlighted on positional therapy as a very

successful

> > > > treatment and would provide some written material on several

> > > > techniques. I cannot believe his response. I read the exact

> > > response

> > > > in this group, word for word.

> > > >

> > > > I let him finish his canned assessment and he asked if I had

> any

> > > > questions. I said, yes.

> > > >

> > > > I asked about helmets and bands and his thoughts. He said

there

> > > have

> > > > been some surprising results, but overall, these devices were

> > high

> > > > maintenance and could cause sores and most-likely,

> disappointing

> > > > results.

> > > >

> > > > I told him about all the successes I have read about within

> this

> > > > group and other means, and that I would certainly classify

the

> > > > results as genuine and very appealing. I continued to

> articulate

> > > that

> > > > I have chosen the method of treatment I feel best suits my

son

> > and

> > > > cranial orthosis is it. He looked at my son's head one more

> time

> > > and

> > > > said he would write the referral to Stanford University's

> > Orthosis

> > > > department. Kaiser doe's not offer the service directly and

> > > contracts

> > > > this type of treatment.

> > > >

> > > > YAAAAAAAAAAAAAHHHHHHHHHHOOOOOOOOOOOOOOOOOOO!

> > > >

> > > > I pulled out the list of questions I downloaded from

> > > > WWW.plagiocephaly.org, regarding " questions to ask your

> Doctor " .

> > He

> > > > answered most of them but seemed bewildered at my preparation.

> > > >

> > > > I asked him if he conducts CT scans to eliminate the

> possibility

> > of

> > > > craniosynostisis. He was very adimate against exposing my son

> to

> > > the

> > > > radiation. He was very confident that his 22 years as a

> pediatric

> > > > neurosurgeon had exposed him to plagiocephaly and he can spot

> the

> > > > characteristics instantly. I accepted his answer and decided

to

> > > > comply with his non-recommendation.

> > > >

> > > > As for his severity, the doctor said it was mild-moderate,

and

> > that

> > > > the people at Stanford would give me exact symmetrical

> > > misalignments.

> > > > Great!

> > > >

> > > > It was very important for me to educate myself ASAP and arm

> > myself

> > > > against replies from the medical establishment that align

> > > themselves

> > > > with insurance costs. If I would have went to the

neurosurgeon

> > and

> > > > listened to his initial response I would be treating a

moderate

> > > case

> > > > of plagiocephaly with repositioning techniques only.

> > > >

> > > > Thanks again from all of you for your suggestions / support

and

> > > most

> > > > importantly, your personal experiences. I will continue to

> update

> > > > this group and reply to all who answered my posting. I will

> post

> > my

> > > > pictures of my son's head soon.

> > > >

> > > > Thanks,

> > > > 's Dad,

[Guest guest]

: It is not unreasonable to ask your doctor to inoculate your

child one shot at a time; instead of the typical " battery " approach

most prescribe. Allowing your child intervals between shots may

reduce your child's reactions, especially if one or more of the

inoculations is causing allergic reactions.

I would ask.

> > > > > First, I would like to thank all of you who replied to my

> > initial

> > > > > message. This group and the experiences that come with it

are

> > > quite

> > > > > impressive. In the last couple of days I have scrolled the

> > > message

> > > > > archives for hours trying to understand plagiocephaly and

> > develop

> > > > > some sort of strategic approach...and to find some comfort

> and

> > > > > relief. Thank you all!

> > > > >

> > > > > My son was seen by a neurosurgeon at Kaiser in Sacramento.

> > Within

> > > > 10

> > > > > seconds, he said he could see my son had Plagiocephaly. He

> > > > continued

> > > > > to explain to me the origin, saying it was a benign

condition

> > and

> > > > > other than a minor cosmetic challenge my son would enjoy a

> > > > successful

> > > > > life. He highlighted on positional therapy as a very

> successful

> > > > > treatment and would provide some written material on

several

> > > > > techniques. I cannot believe his response. I read the exact

> > > > response

> > > > > in this group, word for word.

> > > > >

> > > > > I let him finish his canned assessment and he asked if I

had

> > any

> > > > > questions. I said, yes.

> > > > >

> > > > > I asked about helmets and bands and his thoughts. He said

> there

> > > > have

> > > > > been some surprising results, but overall, these devices

were

> > > high

> > > > > maintenance and could cause sores and most-likely,

> > disappointing

> > > > > results.

> > > > >

> > > > > I told him about all the successes I have read about within

> > this

> > > > > group and other means, and that I would certainly classify

> the

> > > > > results as genuine and very appealing. I continued to

> > articulate

> > > > that

> > > > > I have chosen the method of treatment I feel best suits my

> son

> > > and

> > > > > cranial orthosis is it. He looked at my son's head one more

> > time

> > > > and

> > > > > said he would write the referral to Stanford University's

> > > Orthosis

> > > > > department. Kaiser doe's not offer the service directly and

> > > > contracts

> > > > > this type of treatment.

> > > > >

> > > > > YAAAAAAAAAAAAAHHHHHHHHHHOOOOOOOOOOOOOOOOOOO!

> > > > >

> > > > > I pulled out the list of questions I downloaded from

> > > > > WWW.plagiocephaly.org, regarding " questions to ask your

> > Doctor " .

> > > He

> > > > > answered most of them but seemed bewildered at my

preparation.

> > > > >

> > > > > I asked him if he conducts CT scans to eliminate the

> > possibility

> > > of

> > > > > craniosynostisis. He was very adimate against exposing my

son

> > to

> > > > the

> > > > > radiation. He was very confident that his 22 years as a

> > pediatric

> > > > > neurosurgeon had exposed him to plagiocephaly and he can

spot

> > the

> > > > > characteristics instantly. I accepted his answer and

decided

> to

> > > > > comply with his non-recommendation.

> > > > >

> > > > > As for his severity, the doctor said it was mild-moderate,

> and

> > > that

> > > > > the people at Stanford would give me exact symmetrical

> > > > misalignments.

> > > > > Great!

> > > > >

> > > > > It was very important for me to educate myself ASAP and arm

> > > myself

> > > > > against replies from the medical establishment that align

> > > > themselves

> > > > > with insurance costs. If I would have went to the

> neurosurgeon

> > > and

> > > > > listened to his initial response I would be treating a

> moderate

> > > > case

> > > > > of plagiocephaly with repositioning techniques only.

> > > > >

> > > > > Thanks again from all of you for your suggestions / support

> and

> > > > most

> > > > > importantly, your personal experiences. I will continue to

> > update

> > > > > this group and reply to all who answered my posting. I will

> > post

> > > my

> > > > > pictures of my son's head soon.

> > > > >

> > > > > Thanks,

> > > > > 's Dad,

[Guest guest]

:

Thanks for the suggestion - I brought it up with my daughter's

osteopath today, and he is in agreement. He also told me to not let

them use any serum from before 2002 (when they were required to stop

using mercury in the formulas - the mercury is labeled as thinusol

(sp?)), and if she has any reaction here on out, he can help with

that. Also, I will only allow the main vaccinations to be given -

she can get the hep B and varicella,etc. later. I guess I don't care

if she gets the Chickenpox, and if she doesn't contract them

naturally, I will have her get the shots when she's older.

Here's my big beef with all of this: They are so worried about

somthing like vaccinating for chickenpox, a relatively mild disease

for kids (we all had it), yet as she lay there with her little head

tilted, the SCM with a big knot in it, her head misshapen and her

face asymmetrical, I am told that she's fine and not to do anything

for it. Be glad it's not cancer. Makes me crazy.

Thanks again for your suggestion!

> > > > > > First, I would like to thank all of you who replied to my

> > > initial

> > > > > > message. This group and the experiences that come with it

> are

> > > > quite

> > > > > > impressive. In the last couple of days I have scrolled

the

> > > > message

> > > > > > archives for hours trying to understand plagiocephaly and

> > > develop

> > > > > > some sort of strategic approach...and to find some

comfort

> > and

> > > > > > relief. Thank you all!

> > > > > >

> > > > > > My son was seen by a neurosurgeon at Kaiser in

Sacramento.

> > > Within

> > > > > 10

> > > > > > seconds, he said he could see my son had Plagiocephaly.

He

> > > > > continued

> > > > > > to explain to me the origin, saying it was a benign

> condition

> > > and

> > > > > > other than a minor cosmetic challenge my son would enjoy

a

> > > > > successful

> > > > > > life. He highlighted on positional therapy as a very

> > successful

> > > > > > treatment and would provide some written material on

> several

> > > > > > techniques. I cannot believe his response. I read the

exact

> > > > > response

> > > > > > in this group, word for word.

> > > > > >

> > > > > > I let him finish his canned assessment and he asked if I

> had

> > > any

> > > > > > questions. I said, yes.

> > > > > >

> > > > > > I asked about helmets and bands and his thoughts. He said

> > there

> > > > > have

> > > > > > been some surprising results, but overall, these devices

> were

> > > > high

> > > > > > maintenance and could cause sores and most-likely,

> > > disappointing

> > > > > > results.

> > > > > >

> > > > > > I told him about all the successes I have read about

within

> > > this

> > > > > > group and other means, and that I would certainly

classify

> > the

> > > > > > results as genuine and very appealing. I continued to

> > > articulate

> > > > > that

> > > > > > I have chosen the method of treatment I feel best suits

my

> > son

> > > > and

> > > > > > cranial orthosis is it. He looked at my son's head one

more

> > > time

> > > > > and

> > > > > > said he would write the referral to Stanford University's

> > > > Orthosis

> > > > > > department. Kaiser doe's not offer the service directly

and

> > > > > contracts

> > > > > > this type of treatment.

> > > > > >

> > > > > > YAAAAAAAAAAAAAHHHHHHHHHHOOOOOOOOOOOOOOOOOOO!

> > > > > >

> > > > > > I pulled out the list of questions I downloaded from

> > > > > > WWW.plagiocephaly.org, regarding " questions to ask your

> > > Doctor " .

> > > > He

> > > > > > answered most of them but seemed bewildered at my

> preparation.

> > > > > >

> > > > > > I asked him if he conducts CT scans to eliminate the

> > > possibility

> > > > of

> > > > > > craniosynostisis. He was very adimate against exposing my

> son

> > > to

> > > > > the

> > > > > > radiation. He was very confident that his 22 years as a

> > > pediatric

> > > > > > neurosurgeon had exposed him to plagiocephaly and he can

> spot

> > > the

> > > > > > characteristics instantly. I accepted his answer and

> decided

> > to

> > > > > > comply with his non-recommendation.

> > > > > >

> > > > > > As for his severity, the doctor said it was mild-

moderate,

> > and

> > > > that

> > > > > > the people at Stanford would give me exact symmetrical

> > > > > misalignments.

> > > > > > Great!

> > > > > >

> > > > > > It was very important for me to educate myself ASAP and

arm

> > > > myself

> > > > > > against replies from the medical establishment that align

> > > > > themselves

> > > > > > with insurance costs. If I would have went to the

> > neurosurgeon

> > > > and

> > > > > > listened to his initial response I would be treating a

> > moderate

> > > > > case

> > > > > > of plagiocephaly with repositioning techniques only.

> > > > > >

> > > > > > Thanks again from all of you for your suggestions /

support

> > and

> > > > > most

> > > > > > importantly, your personal experiences. I will continue

to

> > > update

> > > > > > this group and reply to all who answered my posting. I

will

> > > post

> > > > my

> > > > > > pictures of my son's head soon.

> > > > > >

> > > > > > Thanks,

> > > > > > 's Dad,

[Guest guest]

:

You are so right about the focus on insurance issues.

When we saw the first neurosurgeon for our daughter,

the doctor flat out told us that insurance would not

pay for it and that there were other more deserving

people in need of the insurance money. I was

appalled, because in my opinion, she should have only

focused on the medical necessity and not on the

insurance coverage.

As it turned out, this physician wrote a very tainted

report stating that she had informed us that the

insurance would not cover the band. She worked for the

insurance group that then denied coverage. Eventually

we were successful in obtaining a second opinion and

getting the denial overturned.

Keep up the good work, aggressiveness does pay off.

Tami (mom to Annika)

--- eklucky1 <eklucky@...> wrote:

> :

>

> Thank you for your response. I must say the

> nuerosurgeon did scoff

> and detach from my internet resources, but he could

> not minimize or

> diminsh the concept of cranial molding. He admitted

> that the cause of

> my son's plagiocephaly was undoubtdly caused from

> external

> pressure...well the converse result should be

> expected with

> controlled and active cranail molding.

>

> If anything, the doctor could sense my non-negotable

> approach and

> probably wanted to get me the he** out of his

> office.

>

> I wanted to share this experience with the group to

> demonstrate that

> the medical community considers the insurance

> variable whenever

> allowable. As long as the medical community views

> plagiocephaly as

> primarily cosmetic and not nuerologically damaging

> the insurance

> consideration becomes primary.

>

> Again, if it were not for this group and all the

> invaluable resources

> I may have posted a different response tonight.

>

> 's dad,

>

>

> > > > First, I would like to thank all of you who

> replied to my

> initial

> > > > message. This group and the experiences that

> come with it are

> > quite

> > > > impressive. In the last couple of days I have

> scrolled the

> > message

> > > > archives for hours trying to understand

> plagiocephaly and

> develop

> > > > some sort of strategic approach...and to find

> some comfort and

> > > > relief. Thank you all!

> > > >

> > > > My son was seen by a neurosurgeon at Kaiser in

> Sacramento.

> Within

> > > 10

> > > > seconds, he said he could see my son had

> Plagiocephaly. He

> > > continued

> > > > to explain to me the origin, saying it was a

> benign condition

> and

> > > > other than a minor cosmetic challenge my son

> would enjoy a

> > > successful

> > > > life. He highlighted on positional therapy as

> a very successful

> > > > treatment and would provide some written

> material on several

> > > > techniques. I cannot believe his response. I

> read the exact

> > > response

> > > > in this group, word for word.

> > > >

> > > > I let him finish his canned assessment and he

> asked if I had

> any

> > > > questions. I said, yes.

> > > >

> > > > I asked about helmets and bands and his

> thoughts. He said there

> > > have

> > > > been some surprising results, but overall,

> these devices were

> > high

> > > > maintenance and could cause sores and

> most-likely,

> disappointing

> > > > results.

> > > >

> > > > I told him about all the successes I have read

> about within

> this

> > > > group and other means, and that I would

> certainly classify the

> > > > results as genuine and very appealing. I

> continued to

> articulate

> > > that

> > > > I have chosen the method of treatment I feel

> best suits my son

> > and

> > > > cranial orthosis is it. He looked at my son's

> head one more

> time

> > > and

> > > > said he would write the referral to Stanford

> University's

> > Orthosis

> > > > department. Kaiser doe's not offer the service

> directly and

> > > contracts

> > > > this type of treatment.

> > > >

> > > > YAAAAAAAAAAAAAHHHHHHHHHHOOOOOOOOOOOOOOOOOOO!

> > > >

> > > > I pulled out the list of questions I

> downloaded from

> > > > WWW.plagiocephaly.org, regarding " questions to

> ask your

> Doctor " .

> > He

> > > > answered most of them but seemed bewildered at

> my preparation.

> > > >

> > > > I asked him if he conducts CT scans to

> eliminate the

> possibility

> > of

> > > > craniosynostisis. He was very adimate against

> exposing my son

> to

> > > the

> > > > radiation. He was very confident that his 22

> years as a

> pediatric

> > > > neurosurgeon had exposed him to plagiocephaly

> and he can spot

> the

> > > > characteristics instantly. I accepted his

> answer and decided to

> > > > comply with his non-recommendation.

> > > >

> > > > As for his severity, the doctor said it was

> mild-moderate, and

> > that

> > > > the people at Stanford would give me exact

> symmetrical

> > > misalignments.

>

=== message truncated ===

__________________________________________________

[Guest guest]

I'm so sorry the doctor dismissed your internet research like that. I feel so lucky that the doctor we went to see actually said to us "You've probably been doing a lot of research on the internet, (and when we nodded at that) so you probably have a good idea of what to expect here." But this was a Cranialfacial specialist who works closely with Cranial Technologies. My pediatrician on the other hand is a jerk who only very reluctantly gave me the name of CT and said, "you know, they're just going to talk you into getting a helmet for him."

~

Re: My son

: Thank you for your response. I must say the nuerosurgeon did scoff and detach from my internet resources, but he could not minimize or diminsh the concept of cranial molding. He admitted that the cause of my son's plagiocephaly was undoubtdly caused from external pressure...well the converse result should be expected with controlled and active cranail molding.If anything, the doctor could sense my non-negotable approach and probably wanted to get me the he** out of his office. I wanted to share this experience with the group to demonstrate that the medical community considers the insurance variable whenever allowable. As long as the medical community views plagiocephaly as primarily cosmetic and not nuerologically damaging the insurance consideration becomes primary. Again, if it were not for this group and all the invaluable resources I may have posted a different response tonight. 's dad,

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.362 / Virus Database: 199 - Release Date: 5/7/02

[Guest guest]

In a message dated 5/21/02 12:14:26 AM Central Daylight Time,

eklucky@... writes:

<< As long as the medical community views plagiocephaly as

primarily cosmetic and not nuerologically damaging the insurance

consideration becomes primary. >>

I couldn't agree more with this statement.

Marci

[Guest guest]

In a message dated 5/21/2002 3:54:55 PM Central Daylight Time, tsesq@... writes:

When we saw the first neurosurgeon for our daughter,

the doctor flat out told us that insurance would not

pay for it and that there were other more deserving

people in need of the insurance money

This infuriates me!

Beck

[Guest guest]

In a message dated 5/21/2002 8:38:18 AM Central Daylight Time, dweston6587@... writes:

nervous about allergic reactions. Already I have received the canned

responses, and am about fit to be tied. I might have to not let her

receive the shots for a while in order to protect her from death or

serious injury, and the consensus out there is that "shots don't hurt

anyone -- well ALMOST no-one, there are some that die, suffer brain

damage, stop breathing, etc., due to allergies, but that is rare".

- sucha debatable issue here- had seizures due to his shots and they told me the same thing this rarely happens- we decided to eliminate 2 of his vaccinations with much gruff from the ped- but it is our son and coincidentally after his next 2 series of shots he ended up with high fevers and blisters in his mouth throat hands feet butt etc. and they claim it was the coxsachie virus- funny he got it twice and both times after his shots. My sister has not immunized any of her children-although I am scared not to immunize she strongly believes this is the best decision for her family. I can provide you with some resources and info form her if you like. She does get a great newsletter about it.

Beck

[Guest guest]

I would be HOTTER THAN HELL!!!! Let me at them .... Let me at them... who in the freaking world made Dr's & Insurance Co.'s God???? did I miss something???? Trisha

-----Original Message-----From: bbbhand@... [mailto:bbbhand@...]Sent: Wednesday, May 22, 2002 2:05 PMPlagiocephaly Subject: Re: Re: My son In a message dated 5/21/2002 3:54:55 PM Central Daylight Time, tsesq@... writes:

When we saw the first neurosurgeon for our daughter,the doctor flat out told us that insurance would notpay for it and that there were other more deservingpeople in need of the insurance moneyThis infuriates me!Beck For more plagio info

[Guest guest]

I'm happy for you I just cant believe the " there were other more deserving

> people in need of the insurance money " comment...Trisha

Re: Re: My son

>

>

> In a message dated 5/21/2002 3:54:55 PM Central Daylight Time,

tsesq@y... writes:

>

>

>

>

> When we saw the first neurosurgeon for our daughter,

> the doctor flat out told us that insurance would not

> pay for it and that there were other more deserving

> people in need of the insurance money

>

>

>

> This infuriates me!

> Beck

>

>

[Guest guest]

In a message dated 5/22/02 2:16:13 PM Central Daylight Time, bbbhand@...

writes:

<< My

sister has not immunized any of her children-although I am scared not to

immunize she strongly believes this is the best decision for her family. >>

Can she admit her children into school with immunizations? She couldn't do it

in the public school here in Oklahoma. A current shot record is REQUIRED to

enter a public school. Very interesting.

Marci

[Guest guest]

Funny you guys are talking about this: At our Lamaze class- an Assistant

Principal was there (preggers) and we discussed immunization as a class

topic. My husband went up to her after the discussion and said that he was

never immunized and that his mother wrote a note saying such to allow him

into school. She said she didn't care what note a student brought in- they

would not be allowed into her school (and in a very snotty tone I might add).

It is such a catch 22- the risk of catching a disease is very scary

(especially in my neck of the woods being in South Florida where immigrants

are coming from abroad all the time)- so you feel its necessary to immunize-

but at the same time- I don't want to risk that my son will be the slim

chance of being comatose! What to do!

' Mom

[Guest guest]

Trisha:

I couldn't believe the comment either - that she would

actually tell us that there were other people more

deserving of the insurance money. Needless to say, we

did not go back to that doctor. The best part is that

I used that comment to our advantage - I quoted the

doctor and her nasty little medical report in my

appeal. I told the insurance administrator that I

thought this doctor had crossed the line between

insurance adjuster and medical physician. I was

successful and the provider reversed the denial. We

are still waiting to find out how much they are going

to pay. But I don't care. It was good enough that I

prevailed!

Tami (mom to Annika)

--- Trisha s <trisham@...> wrote:

> I'm happy for you I just cant believe the " there

> were other more deserving

> > people in need of the insurance money "

> comment...Trisha

>

> Re: Re: My son

> >

> >

> > In a message dated 5/21/2002 3:54:55 PM Central

> Daylight Time,

> tsesq@y... writes:

> >

> >

> >

> >

> > When we saw the first neurosurgeon for our

> daughter,

> > the doctor flat out told us that insurance would

> not

> > pay for it and that there were other more

> deserving

> > people in need of the insurance money

> >

> >

> >

> > This infuriates me!

> > Beck

> >

> >

[Guest guest]

Hi,

My daughter had the same problem with asthma and eczema. I did a liver

cleanse on her when she was ten. It was quite hard on her. She was able to

do the cleanse according to Dr. 's recipe. She held down the

oil/grapefruit mixture for several hours then threw it up. We had a very

rough night. The next morning we continued on the cleanse even though she

had thrown up the oil mixture. She passed some HUGE stones. Her allergies,

asthma, and skin did clear up and stayed cleared up for a few months. We

did another cleanse on her and had good results again. She is 12 now and we

still have to do cleanses on her periodically during allergy season. We

also took all the cleaning products out of our home and switched to

non-caustic laundry soap and cleaners. We opted to use the Melaleuca brand

and since we switched to that brand she has not had an asthma attack since.

Her skin rashes come back less often and she doesn't dig holes in herself

while sleeping anymore.

We haven't had to do a cleanse on her this year yet.

I don't know the dose for such a young child. I don't think I would do it

on my child if they were that young. I think I would opt for changing the

cleaning products and laundry products instead. It really did make a huge

difference in my daughter even though we were doing the cleanses on her.

Hope this helps,

Karma

http://www.loaves-n-fishes.com 10-30% off Quality Health Care Products

http://www.HealthyHomeChoices.com - Work From Home

Set Up a Conference with Me http://karma.inhomewebcast.com/

----- Original Message -----

From: " lwnorbert " <lwnorbert@...>

<gallstones >

Sent: Thursday, April 03, 2003 10:54 PM

Subject: my son

my son nicholas has eczema and asthma. we have tried creams, steroids,

etc. he is only 3 years of age. is he two young to cleanse his liver.

if not what dosage should i use?

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.467 / Virus Database: 266 - Release Date: 4/1/03

[Guest guest]

> my son nicholas has eczema and asthma. we have tried creams, steroids,

> etc. he is only 3 years of age. is he two young to cleanse his liver.

> if not what dosage should i use?

Sorry to hear your son is going through this at such a young

age. It was when my children were that young that I began

to be interested in good nutrition...they are 19 and 21 now :-)

Although cleansing the liver is always a wonderful thing, I would

also consider things like his intestinal system...does he

tend to have trouble with constipation? Since that is the number

one avenue of eliminating toxins from the body, it is good

to keep it moving along well, or the body will begin to

cleanse itself through whatever avenues it can, and the

skin is one of those avenues. Another thing that

I would look into is whether or not he may have overgrowth

of Candida in his digestive system... " bad bacteria " . We

all have it, but it needs to be kept in it's place :-) This is

done by avoiding sugars, white flours, wheat products,

and lots of other things that we have learned to enjoy.

It is a process, and you do it a little bit at a time, and

learn what you can substitute. There is a book called

" The Yeast Syndrome " that has a good diet in it, and

lots of information about Candida overgrowth....it

should be in paperback in the health section or similar

section of a bookstore, or available somewhere on

the web. I have a link on my home page to Amazon

or and Noble (not sure which) to purchase the

book as it is such a good one.

That's just a start, it takes time a commitment.

To help asthma symptoms while the

body is getting better, I always suggest ALJ, a great

decongestant herbal combination that also opens up

the breathing. Also a good probiotic to build up good

bacteria, can be had in chewable form for children.

L. Meydrech, CN

http://nutritionist.tripod.com

http://www.mynsp.com/meydrech

mailto:claudiameydrech@...

" A cheerful heart is good medicine " Prov. 17:22a

Remember our military with your prayers and support!

" God bless America...(and all His people throughout

the world)...stand beside us, and guide us "

[Guest guest]

My son had the same problem as far as favoring one eye over the other. I'm

not sure about Canada, but here in Ohio where i live his eye doctor did a

totally different type of surgery for his one eye turning in. His eye

surgeon doesn't do anything except the " cosmetic " stuff, even though the

procedures aren't considered cosmetic. Garrett, my son, had Duanes

Retraction Syndrome and had surgery for that about 2 years ago. That was

where his eye was turned in. They went in and snipped the muscle or

something, i actually forget. He was also given atropine drops to blur the

vision in the eye he was favoring. We tried the patch for years, but that

didn't work at all. We did the drops for 3 months and when we took him in

for his check up we were told that he was using both eyes equally.

His eye surgeon wouldn't even consider doing surgery until he was at least

5yrs old. He says the longer they wait the better the results. He had a

temporary procedure done when he was 4 mons. old just to raise his eyelids

enough for him to see. Which, in my husbands opinion, was too late, but the

surgeon wouldn't do anything until the eye doctor said that something needed

to be done. He thinks they waited too long because he's been wearing

glasses since shortly before he turned 2 and he gets a new script every 3

months. He turned 5 in July. His lenses just keep getting thicker and

thicker.

Has your son been to a regular eye doctor for an exam? I'm sure he has,

but if he seems to be favoring one eye over the other there may another

issue going on besides the blepharophimosis. I myself had surgery for

blepharophimosis when i was child. Funny you should mention the drilling

through the nose, because that's what they did to me when i was 5. I can

vaguely remember, but i do remember they used fishing weights in the corners

where they drilled the hole. I can remember having patches on my eyes and

the fishing weights falling out because i kept trying to peek out of the

patches. They do it totally different know. My oldest son, Austin, also

had surgery for it and it's amazing how his eyes look. I've been trying for

months to get my husband to be buy me a new scanner because the one i have

broke. I want to put our pictures on here. My youngest is having his first

" permanent " surgery next Friday so i'm getting kinda anxious. His surgeon

has already told me that he's not sure that his will turn out as well as

Austin's did because Garrett's is alot worse. We'll just have to hope for

the best. They'll do the 2nd surgery 4-6 mons after this first one.

Hope you find a good doctor somewhere for your son. There are amazing

surgeons here in the US, maybe you could look for one here.

[Guest guest]

Hi there:)...Our son ethan is 7 months old today actually!...He was diagnose at 1 month old with bleph...it is not in either family that we know of anyway...apparently there is dna testing to find out where it comes from or if it is something that just happened!...We have been informed of the surgery where they take a tendon from his leg, and use that to do the lft through the eyelids and come out through the top of the brow! but this can't be done until he is about 5 years old as thats when they tendon is the right size! We don't want to wait that long, we get all the stares, as you do, I think that they are thinking downs??? I don't know...I have even been asked if my husband is asian! and yes even the comment on ohhh hes asleep, when actally he is wide awake:)...don't you get tired of explaining to everyone! we do, I feel that his eyes are topic of conversation all the time...Did your son seem to have any difficulties walking or anything??? I know they see fine, but there range of vision seems to be more obscured than ours, ethans eyes get very goopy, dried up sleep a lot, I guess because of the small opening? does your son?...My son like yours lights up the room as well, to people that know him:) mu mum gets teary eyed every time she sees him! she said he melts her heart:)..I have a photo of him if you would like to see...do you have one of your son, I would love to see what he looks like been age 2!...people that know us always say when they see him..."his eyes look bigger today" I think may-be as they get bigger they learn to open them more?..Well hope to hear back from you...and a photo as well:)...bye for now

blepharophimosis My Son

My son was born on June 5, 2001. We live in a VERY small community in Ontario Canada. We first discovered a problem with my son's eye's when he was a few weeks old.He was diagnoised with Blepharophimosis. I have read and been told that it is heriditary, however as far back as I go, I cannot find it in our family. I have seen Doctors in two different Sick Children's Hospitals in Canada. Both plastic surgeons recommended different procedures. One explained drilling a hole through his nose to pull the eyes closer together and then connecting his eye lids to his brow muscles. Obviously not a considerstion. He is just over 2. His Father would like to go ahead with surgery soon. I would like more time and information. Is there a surgeon that specializes in just blepharophimosis surgery? I am noticing that his left eye is weak and turns in and that he favors his stronger right eye to see with. This is going to cause a huge rush on things very soon.My son is a bright beautiful boy with the charisma that lights up a room. When ever we go places people stare at him. As a parent I must be mature and ignore it but it breaks my heart to think of the social obsticles he has to face in the future. Am I ever sick of " Oh he is so sleepy" . At two he knows the difference in his eyes already. He will sit with a mirror and manipulate his head in different directions staring at himself. He has the best fine motors skills and notices things most people would ignore or not find facinating. It is an amazing skill the way he sees the world. But for vision reasons and neck strain we need to go ahead with surgery. I do want the best. Can anyone tell me what he will look like afterwards? Will his eyes look "normal" {worlds perspective)Is there any place in the world that can offer him more? Help and information needed in Canada.

[Guest guest]

I would love to see b4 and after pix of you and you sons! our wee guy is only 7 months...it is nowhere in our family??? don't know where he got it from! unless its way far back that we just don't know?...apparently you can get dna to find this out...My husband is from the usa! we met in hawaii:) he was born in illonois...may-be we should come over to have the surgery there ha!...leanne

Re: blepharophimosis My Son

My son had the same problem as far as favoring one eye over the other. I'mnot sure about Canada, but here in Ohio where i live his eye doctor did atotally different type of surgery for his one eye turning in. His eyesurgeon doesn't do anything except the "cosmetic" stuff, even though theprocedures aren't considered cosmetic. Garrett, my son, had DuanesRetraction Syndrome and had surgery for that about 2 years ago. That waswhere his eye was turned in. They went in and snipped the muscle orsomething, i actually forget. He was also given atropine drops to blur thevision in the eye he was favoring. We tried the patch for years, but thatdidn't work at all. We did the drops for 3 months and when we took him infor his check up we were told that he was using both eyes equally.His eye surgeon wouldn't even consider doing surgery until he was at least5yrs old. He says the longer they wait the better the results. He had atemporary procedure done when he was 4 mons. old just to raise his eyelidsenough for him to see. Which, in my husbands opinion, was too late, but thesurgeon wouldn't do anything until the eye doctor said that something neededto be done. He thinks they waited too long because he's been wearingglasses since shortly before he turned 2 and he gets a new script every 3months. He turned 5 in July. His lenses just keep getting thicker andthicker.Has your son been to a regular eye doctor for an exam? I'm sure he has,but if he seems to be favoring one eye over the other there may anotherissue going on besides the blepharophimosis. I myself had surgery forblepharophimosis when i was child. Funny you should mention the drillingthrough the nose, because that's what they did to me when i was 5. I canvaguely remember, but i do remember they used fishing weights in the cornerswhere they drilled the hole. I can remember having patches on my eyes andthe fishing weights falling out because i kept trying to peek out of thepatches. They do it totally different know. My oldest son, Austin, alsohad surgery for it and it's amazing how his eyes look. I've been trying formonths to get my husband to be buy me a new scanner because the one i havebroke. I want to put our pictures on here. My youngest is having his first"permanent" surgery next Friday so i'm getting kinda anxious. His surgeonhas already told me that he's not sure that his will turn out as well asAustin's did because Garrett's is alot worse. We'll just have to hope forthe best. They'll do the 2nd surgery 4-6 mons after this first one.Hope you find a good doctor somewhere for your son. There are amazingsurgeons here in the US, maybe you could look for one here.