New to this

[Guest guest]

Kathleen- My son Braden was diagnosed at 2 months old with tort and plagio. We started repositioning immediately. At 4 months old, we went to discuss helmet therapy. Braden was now a brachy baby with a little plagio. So even if you had started the repositioning at 2 1/2 months, you may not have seen great results. The right side of Braden's head started to round out but the rest was just going flat. He is a back sleeper regardless of what you try to do with him. Braden got his Starband on 02/17/06 and has done great and has made excellent progress to date. Good luck! Heidi Mom to Braden - Starband 02/17/06 >> hi,> I am new to this group and very

thankful to have found this site. My> daughter is 4.5 months old and we first noticed her flattening on the> right side at 2 months. Her pediatrician said that "all babies have> funny shaped heads" well, 2.5 months later its worse. I have been> terrified of SIDS and kept her on her back to sleep. We tried side> sleeping until I read a new article from the AMA saying that it was> just as dangerous as tummy sleeping for SIDS. We just went back to her> pediatrician for a second look at her head, and we got a referral to a> pediatric neurosurgeon for a consult. We see him next week. Had to get> x-rays taken of her skull before we go. We started aggressive> repositioning a week ago. I cannot get over the guilt. If only my> husband and I started aggressive repositioning at 2 months !! I> believed her dr. when she told me at 2 months my daughter's head would> eventually round out when she started

holding her head up. I feel like> it is my fault she looks this way. From reading your site it seems> that she will most likely need a band, it doesn't seem that aggressive> repo helps most babies, although from the pictures I see that has> helped some. I feel like we have ruined our perfect beautiful little> baby girl. I feel so sad and guilty. Thank you for this site.> Kathleen.>

[Guest guest]

Kathleen- My son Braden was diagnosed at 2 months old with tort and plagio. We started repositioning immediately. At 4 months old, we went to discuss helmet therapy. Braden was now a brachy baby with a little plagio. So even if you had started the repositioning at 2 1/2 months, you may not have seen great results. The right side of Braden's head started to round out but the rest was just going flat. He is a back sleeper regardless of what you try to do with him. Braden got his Starband on 02/17/06 and has done great and has made excellent progress to date. Good luck! Heidi Mom to Braden - Starband 02/17/06 >> hi,> I am new to this group and very

thankful to have found this site. My> daughter is 4.5 months old and we first noticed her flattening on the> right side at 2 months. Her pediatrician said that "all babies have> funny shaped heads" well, 2.5 months later its worse. I have been> terrified of SIDS and kept her on her back to sleep. We tried side> sleeping until I read a new article from the AMA saying that it was> just as dangerous as tummy sleeping for SIDS. We just went back to her> pediatrician for a second look at her head, and we got a referral to a> pediatric neurosurgeon for a consult. We see him next week. Had to get> x-rays taken of her skull before we go. We started aggressive> repositioning a week ago. I cannot get over the guilt. If only my> husband and I started aggressive repositioning at 2 months !! I> believed her dr. when she told me at 2 months my daughter's head would> eventually round out when she started

holding her head up. I feel like> it is my fault she looks this way. From reading your site it seems> that she will most likely need a band, it doesn't seem that aggressive> repo helps most babies, although from the pictures I see that has> helped some. I feel like we have ruined our perfect beautiful little> baby girl. I feel so sad and guilty. Thank you for this site.> Kathleen.>

[Guest guest]

Hello everyone. Would like to tell everyone that finding this site and

reading about everyone has made me feel not so lost.Just got diagnosed

with OA in Nov.and RA in Jan.getting ready to start enbrel,was on mtx

but it enlarged my liver.Also on etodolac anti-inflam, and vicodine. I

just got threw war with the insurance co.to get enbrel.Waiting for

arrival.I'm 33 married for almost 16 yrs have five kids,ages 4 to

17.My 15 yrold is disabled.I'm having heck of a time right now.Have

gotten so much worse in the few months since diagnosed.Pain is so

intense.I think my jaw pain is the worst right now.I'm amazed at how

much info is out there. I think I'm here cause I realy dont have

anyone who understands how overwhelming this all is. My life is a mess

and I'm not sure I understand all of this this either. I was fine one

day then in a matter of weeks everything changed.Any advice or info

much appriciated. e

[Guest guest]

You are NOT a bad parent - you are a wonderful mommy for taking care of her and getting treatment so soon!!!!

Plagio is because of the tort - it's not your fault! We did EVERYTHING to keep our dd off her right side but she still developed plagio.

Hang in there and know that this group is WONDERFUL and always seems to have the 1st hand info I need!!!

Jen

Mommy to 4...and 1 more!!!!

LULI'S HERE!

"Luli"

www.babiesonline.com/babies/j/jens5th/

[Guest guest]

Hi,

Welcome to the group! First of all you're NOT a bad parent!!!! Plagio

is secondary to torticollis! Your baby was born with tort so basically

it was only a matter of time before the plagio happened. Your baby

doesn't have plagio b/c you didn't hold her enough. In my opinion

you're totally on top of this situation and that is only a good thing!

I also think it's only a good thing that she's being referred for

testing. It can't help and if there is a problem they can tackle it

now while she's still so young.

What do you plan on doing for her plagio? Repositioning or banding?

Good luck with the tests, let us know how she makes out.

>

> Hi, well about 1 month ago my then 2 mth old daughter Emme was

> diagnosed with plagiocephaly + torticollis. We have had her in therapy

> for 2 weeks for the torticollis. Today the terapist mentioned she

> wanted to refer us she thought we should go ahead with the doc band,

> plus wants our daughter tested for other neurological issues. First

> off...neurological issues..that can be tested at 2 months??? Second, I

> have this overwhelming feeling of guilt that this is somehow my

> fault...and that I am such a bad parent! I have a 2 yr old as well and

> when she was my daughters age we held her 24/7..well with Emme being

> the second child she definetly isn't held 24/7 although I thought I

> was holding her a fair amount..now I feel like I should have been

> holding her more. My pediatrician said the torticollis was congenital,

> bu the plagiocephaly..that isn't right? I have no clue this was all

> just thrown upon me in the past few weeks. Can anyone offer words of

> encouragement or advice??

> Thanks so much-

>

[Guest guest]

I am glad posted this sentence " you are not a bad parent. " I

flet the same way last night after I took my son to the doctor and she

said " I think it is time we see a specialist " . I came home and cried

and told my husband I feel like I am a bad parent and failing my son

because this happened. But a good friend of mine said a bad parent

would not get anything done for their child so that is how I look at

the situation. We have not been diagnosed with anything yet, but I am

sure it is headed in that direction. I understand how you feel, I am

and most likely will be going through it also vey soon.

Jakob 3/8/06

> >

> > Hi, well about 1 month ago my then 2 mth old daughter Emme was

> > diagnosed with plagiocephaly + torticollis. We have had her in

therapy

> > for 2 weeks for the torticollis. Today the terapist mentioned she

> > wanted to refer us she thought we should go ahead with the doc band,

> > plus wants our daughter tested for other neurological issues. First

> > off...neurological issues..that can be tested at 2 months???

Second, I

> > have this overwhelming feeling of guilt that this is somehow my

> > fault...and that I am such a bad parent! I have a 2 yr old as well

and

> > when she was my daughters age we held her 24/7..well with Emme being

> > the second child she definetly isn't held 24/7 although I thought I

> > was holding her a fair amount..now I feel like I should have been

> > holding her more. My pediatrician said the torticollis was

congenital,

> > bu the plagiocephaly..that isn't right? I have no clue this was all

> > just thrown upon me in the past few weeks. Can anyone offer words of

> > encouragement or advice??

> > Thanks so much-

> >

>

[Guest guest]

I have to respond to this. I'm feeling a bit 'bah humbug-ish'

right now.

Perhaps it's because in the last month I've almost lost my mother to

complications

from lung cancer (cardiac arrest, etal) or perhaps it's because I've

been in two car accts

in the last 2 wks (the last one was a hit and run on my car, totaling

it. I have part of

the guy's tag # but the police are telling me they can't use it) or

perhaps it's because my son

was removed from a $60k / yr non public placement where the staff was

interested in

and actually knew what they were doing ...

or perhaps it's because I'm on the east coast where Dr Goldberg is

unable to practice ...

Kathy started the NNY clinic with her own money and time because there

was a need

for on the east coast. She and her clinic have held fundraisers to

help low income

families afford meds and tests. She was able to 'find/acquire' Dr

Bruce who in turn

has taken to families in TX. Kathy and Dr Bruce are providing an

much needed service

for families here in the east who do not have the resources to travel to

CA.

Kathy traveled to land about 2 yrs ago and gave a presentation on

to a group

of parents.

Dr G told me once that if I found medical professionals willing to learn

the protocol

he would teach them what he knew and they could open a clinic.

Another local

mom and I considered 'sponsoring' a Dr we were using so that he could

travel to CA and

intern with Dr G for a few weeks. I believe Kathy traveled to CA and

worked with Dr G

for a time. Dr Bruce had plans to do this but I'm not sure if he did.

Another mom had an SLP who was highly motivated by the protocol.

So what's the deal? Did the negotiations with Brain Matters change all

of this?

A clinic in Colorado isn't going to help families on the east coast.

Doris

land

Posted by: " texasdad5150 " texasdad5150@...

<mailto:texasdad5150@...?Subject=%20Re%3Anew%20to%20%20protocol-%20How\

%20do%20we%20get%20started%3F>

texasdad5150 <texasdad5150>

Sat Dec 16, 2006 2:41 pm (PST)

Sorry to inform you according to Dr. Goldberg there is only him till

the centers open

Wayne

>

> There are only two docs that do for now. That will be changing

in the very near future since new centers will be opening up all over

with Brain Matters www.brainmattersinc.com. I will email you

privately with some info.

> Marcia

>

[Guest guest]

Doris:

The Amen clinic is in Reston, Va. They have experience with autistic and adhd

clients. Couldn't Dr Bruce use the results from Dr Amen's Neurospect scan? I

emailed them privately a few months back and they take bcbs.

Doris and Steve <sjsmith@...> wrote:

I have to respond to this. I'm feeling a bit 'bah humbug-ish'

right now.

Perhaps it's because in the last month I've almost lost my mother to

complications

from lung cancer (cardiac arrest, etal) or perhaps it's because I've

been in two car accts

in the last 2 wks (the last one was a hit and run on my car, totaling

it. I have part of

the guy's tag # but the police are telling me they can't use it) or

perhaps it's because my son

was removed from a $60k / yr non public placement where the staff was

interested in

and actually knew what they were doing ...

or perhaps it's because I'm on the east coast where Dr Goldberg is

unable to practice ...

Kathy started the NNY clinic with her own money and time because there

was a need

for on the east coast. She and her clinic have held fundraisers to

help low income

families afford meds and tests. She was able to 'find/acquire' Dr

Bruce who in turn

has taken to families in TX. Kathy and Dr Bruce are providing an

much needed service

for families here in the east who do not have the resources to travel to

CA.

Kathy traveled to land about 2 yrs ago and gave a presentation on

to a group

of parents.

Dr G told me once that if I found medical professionals willing to learn

the protocol

he would teach them what he knew and they could open a clinic.

Another local

mom and I considered 'sponsoring' a Dr we were using so that he could

travel to CA and

intern with Dr G for a few weeks. I believe Kathy traveled to CA and

worked with Dr G

for a time. Dr Bruce had plans to do this but I'm not sure if he did.

Another mom had an SLP who was highly motivated by the protocol.

So what's the deal? Did the negotiations with Brain Matters change all

of this?

A clinic in Colorado isn't going to help families on the east coast.

Doris

land

Posted by: " texasdad5150 " texasdad5150@...

<mailto:texasdad5150@...?Subject=%20Re%3Anew%20to%20%20protocol-%20How\

%20do%20we%20get%20started%3F>

texasdad5150 <texasdad5150>

Sat Dec 16, 2006 2:41 pm (PST)

Sorry to inform you according to Dr. Goldberg there is only him till

the centers open

Wayne

>

> There are only two docs that do for now. That will be changing

in the very near future since new centers will be opening up all over

with Brain Matters www.brainmattersinc.com. I will email you

privately with some info.

> Marcia

>

[Guest guest]

:

Is the Amen clinic now taking BCBS? As of 8 mths ago they weren't (as

per a local parent).

I wasn't pleased with the way scans were handled at the Amen Clinic in

Reston.

We used them when they first opened as an alt. to having UCLA do one.

They had no idea how to work with 'children with Autistic behavior'

and their tech was less than skilled. If the scannee moved - they had no

idea what to do.

Their recommendations included meds that would pretty much have deadened

's brain.

I was contacted by Dr Amen's right hand person on our experience. I told

her what had occurred.

She said we should have been referred to their N. CA clinic as that

facility is more experienced

at handling children with ASD.

They are also using outdated hardware and software.

doris

Posted by: " catherine quinn " quinn.cat1968@...

<mailto:quinn.cat1968@...?Subject=%20Re%3A%20new%20to%20this>

quinn.cat1968 <quinn.cat1968>

Mon Dec 18, 2006 9:44 am (PST)

Doris:

The Amen clinic is in Reston, Va. They have experience with autistic and

adhd clients. Couldn't Dr Bruce use the results from Dr Amen's

Neurospect scan? I emailed them privately a few months back and they

take bcbs.

Doris and Steve <sjsmith@...

<mailto:sjsmith%40cablespeed.com>> wrote:

I have to respond to this. I'm feeling a bit 'bah humbug-ish'

right now.

Perhaps it's because in the last month I've almost lost my mother to

complications

from lung cancer (cardiac arrest, etal) or perhaps it's because I've

been in two car accts

in the last 2 wks (the last one was a hit and run on my car, totaling

it. I have part of

the guy's tag # but the police are telling me they can't use it) or

perhaps it's because my son

was removed from a $60k / yr non public placement where the staff was

interested in

and actually knew what they were doing ...

or perhaps it's because I'm on the east coast where Dr Goldberg is

unable to practice ...

Kathy started the NNY clinic with her own money and time because there

was a need

for on the east coast. She and her clinic have held fundraisers to

help low income

families afford meds and tests. She was able to 'find/acquire' Dr

Bruce who in turn

has taken to families in TX. Kathy and Dr Bruce are providing an

much needed service

for families here in the east who do not have the resources to travel to

CA.

Kathy traveled to land about 2 yrs ago and gave a presentation on

to a group

of parents.

Dr G told me once that if I found medical professionals willing to learn

the protocol

he would teach them what he knew and they could open a clinic.

Another local

mom and I considered 'sponsoring' a Dr we were using so that he could

travel to CA and

intern with Dr G for a few weeks. I believe Kathy traveled to CA and

worked with Dr G

for a time. Dr Bruce had plans to do this but I'm not sure if he did.

Another mom had an SLP who was highly motivated by the protocol.

So what's the deal? Did the negotiations with Brain Matters change all

of this?

A clinic in Colorado isn't going to help families on the east coast.

Doris

land

Posted by: " texasdad5150 " texasdad5150@...

<mailto:texasdad5150%40>

<mailto:texasdad5150@...

<mailto:texasdad5150%40>?Subject=%20Re%

3Anew%20to%20%20protocol-%20How%20do%20we%20get%20started%3F>

texasdad5150 <texasdad5150

<texasdad5150>>

Sat Dec 16, 2006 2:41 pm (PST)

Sorry to inform you according to Dr. Goldberg there is only him till

the centers open

Wayne

>

> There are only two docs that do for now. That will be changing

in the very near future since new centers will be opening up all over

with Brain Matters www.brainmattersinc.com. I will email you

privately with some info.

> Marcia

>