Update

[Guest guest]

He is so cute!!!! Thank you for sharing his picture.

Angie and Jenna

update

is doing great these days -- thanks to you guys for asking!We haven't noticed any improvement in his headshape since earlier in the year, Feb/March when he had a big growth spurt at around 18 months which helped things along.You can see him here, he looks like such a little man now:http://www.elucem.com/baby/bigboypolo.jpgHis ears look a little off from the front, as you can see, and the birds-eye view of him shows a bit of assymetry if you look for it. Usually his curls disguise it very well. We do still notice some of the "mirror effect".His doc diagnosed him with a speech delay at his 2-year checkup, and we are taking him for a developmental evaluation at Riley Children's in Indianapolis soon. I don't know if it's related to the plagio, but I will bring that up when we talk to the staff there.You know, I'd been kind of hoping our experience with the COPC helmet was an isolated case. :(Cheers all,mom to For more plagio info

[Guest guest]

Hi - is a cutie! Thanks for sharing the picture with

us.

Donna and Xavier DOCband

> is doing great these days -- thanks to you guys for asking!

>

> We haven't noticed any improvement in his headshape since earlier

in

> the year, Feb/March when he had a big growth spurt at around 18

> months which helped things along.

>

> You can see him here, he looks like such a little man now:

>

> http://www.elucem.com/baby/bigboypolo.jpg

>

> His ears look a little off from the front, as you can see, and the

> birds-eye view of him shows a bit of assymetry if you look for it.

> Usually his curls disguise it very well. We do still notice some of

> the " mirror effect " .

>

> His doc diagnosed him with a speech delay at his 2-year checkup,

and

> we are taking him for a developmental evaluation at Riley

Children's

> in Indianapolis soon. I don't know if it's related to the plagio,

> but I will bring that up when we talk to the staff there.

>

> You know, I'd been kind of hoping our experience with the COPC

> helmet was an isolated case.

>

> Cheers all,

>

> mom to

[Guest guest]

Mike, Amgen can help you and your doctor with the appeal. See this

information:

Enbrel.com Enliven Services

Insurance Support:

http://www.enbrel.com/enliven/enbrelenliven-insurance.jsp

Alternatively, you could see if you qualify for their patient assistance

program:

Amgen patient assistance programs:

http://www.amgen.com/patient/assistance.html

I'm sorry that your RA is still not under control. I hope you get a

chance to try Enbrel and that it makes a big difference for you.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] update

> just got back from the R.A. doc and he tells me i have no support in

my right thumb. he wants me to see a hand surgeon to talk to him about

surgey or to make a support to wear. and the R.A. doc said i need

enbrell. no if ands or butts. but my insurance don't pay to well for

that. so the doc is tring to talk to my insurance co. about it .. we'l

see what happens later. i'm amazed that all the meds. i'm on and it's

still the R.A. is still active. if anyone has any advice.. i'm open for

it . thanks mike

[Guest guest]

Hi Mia:

I'm sure you're home from CT. How'd it go? Did they make an

adjustment? I hope it's fitting better & he's happier now.

Debbie

> Hi Ladies...

>

> I need to run to Cranial Tech now, but I just wanted to let y'all

> know that I called them this morning (the red shiny spot is STILL

> there) and they said that is not normal and to bring him in. So

> hopefully this adjustment will help and he won't be so miserable.

> Thanks again for all your support, you are all awesome!

>

> Mia

[Guest guest]

Hi Debbie!

We are back from CT now. They " softened up " the area near his

forehead where the skin was getting damaged and trimmed some spots,

and although he isn't real thrilled about the band, he isn't

screaming like he was initially. What a relief. Tonight will be our

first full night with it on, praying he will sleep well... Thanks for

your concern, the support here is so so so helpful!

Mia

> > Hi Ladies...

> >

> > I need to run to Cranial Tech now, but I just wanted to let y'all

> > know that I called them this morning (the red shiny spot is STILL

> > there) and they said that is not normal and to bring him in. So

> > hopefully this adjustment will help and he won't be so miserable.

> > Thanks again for all your support, you are all awesome!

> >

> > Mia

[Guest guest]

Hi Mia,

Glad to hear that is doing better. Good luck tonight. I am

new to this whole thing, so could you please explain to me what they

did when they " softend up " the area? Thanks, and sorry if it's a

silly question.

> > > Hi Ladies...

> > >

> > > I need to run to Cranial Tech now, but I just wanted to let

y'all

> > > know that I called them this morning (the red shiny spot is

STILL

> > > there) and they said that is not normal and to bring him in.

So

> > > hopefully this adjustment will help and he won't be so

miserable.

> > > Thanks again for all your support, you are all awesome!

> > >

> > > Mia

[Guest guest]

Hi ,

Please. I am the queen of silly questions. I think she just made it

so the foam was a little softer in that area (I'm not sure how). It

didn't feel softer to me but the red spots aren't coming back. If you

want I can ask her on Thursday when we go back. Now I'm curious

too.

Mia

> > > > Hi Ladies...

> > > >

> > > > I need to run to Cranial Tech now, but I just wanted to let

> y'all

> > > > know that I called them this morning (the red shiny spot is

> STILL

> > > > there) and they said that is not normal and to bring him in.

> So

> > > > hopefully this adjustment will help and he won't be so

> miserable.

> > > > Thanks again for all your support, you are all awesome!

> > > >

> > > > Mia

[Guest guest]

Mia,

How is the adjustment working out for ? I'm late in my

replies, so I just wanted to post and see how the " softened up " area

has addressed his red shiny spot. I sure hope that he is more

comfortable after the adjustment.

Take care,

Christie (Mom to Repo'd Remy)

> Hi Ladies...

>

> I need to run to Cranial Tech now, but I just wanted to let y'all

> know that I called them this morning (the red shiny spot is STILL

> there) and they said that is not normal and to bring him in. So

> hopefully this adjustment will help and he won't be so miserable.

> Thanks again for all your support, you are all awesome!

>

> Mia

[Guest guest]

Hi Mia,

How is 's red spot now? Is it still there? How is he doing

otherwise w/it?

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> Hi Ladies...

>

> I need to run to Cranial Tech now, but I just wanted to let y'all

> know that I called them this morning (the red shiny spot is STILL

> there) and they said that is not normal and to bring him in. So

> hopefully this adjustment will help and he won't be so miserable.

> Thanks again for all your support, you are all awesome!

>

> Mia

[Guest guest]

---

Sorry for being late in responding.

Nick has been using Bactroban for the blisters on his pressure

points. His pediatrician also recommended Mederma to fade teh scars

that the blisters have left. His old band was sent to the

headquarters in Arizona where they will make a new band to allow

for more growth spurts. I was told that the band would come back on

July 8th. My concern is that because he has sensitive skin, he may

have another flare up. I wash his hair everyday and put the creams

on those affected areas, so I'm hoping that will be sufficient. I

would have hoped he would be in the middle of his treatment by now,

but at this rate, he may very well be in the band past his first

birthday. His head shape seems to be changing on its own, or maybe

it's just that he has more hair growing that hides it better. Thank

you for your responses and words of encouragement.

In Plagiocephaly , " redlocks2003 " <redlocks@i...>

wrote:

> ,

>

> I remember your original post, and several of us replied to it...

> did you see our responses?

>

> One of my questions in my reply was how much time expired between

> casting and fitting - if that time is excessive, it can contribute

> to fit issues that sometimes can't be resolved. 2 weeks is the

> usually the maximum amount of time, so it seems that your son's

> first DOCband was within that acceptable range. I do know that

they

> try for a quicker turn-around with younger babies... how old was

> your son at the time of the first casting? It's also possible

that

> all protocols were followed correctly, but your son might have had

a

> big growth spurt during that casting/fitting gap, rendering the

band

> too small or the wrong shape from the start.

>

> According to your dates in your post, it looks like 3 weeks passed

> while that first DOCband didn't fit right or caused irritation to

> your son's skin. How frustrating for you and your son! I would

> have hoped that the determination of a new band would have been

> reached earlier. Regarding your son's skin irritations, were they

> red spots that didn't fade in an hour? Possibly heat rash

> problems? Irritation owing to sweating? I kow other parents here

> of banded and helmeted babies can give you some good advice about

> products, band care, etc. if your son was having problems related

to

> heat rash and skin irritation. If your son's red spots were

solely

> due to fit issues, I am hoping that his new DOCband will be in

asap

> to ensure that it is representing his current headshape!! Did

they

> say when the new band would be in??

>

> I only very, very rarely hear of any even slight disappointment

with

> the orthos from Cranial Tech, so I am extremely hopeful that this

> new casting and DOCband will work very well for your son. I

admire

> you for forging ahead with correction for him, even with the

> frustration with the first band, and it not working out! I hope

> this next fitting goes very well, and that you see some rounding

in

> your son very soon.

>

> Take care,

>

> Christie (Mom to Repo'd Remy)

>

>

> > I'm new and I posted before, but I don't know if it made it on

> here.

> > My son was diagnosed with Positional Plagiocephaly on March

25th,

> > this year.Two months later, he was fitted with the DOC band on

May

> > 20th because insurance took their sweet time with decided

whether

> or

> > not to cover the cost. Two weeks later, on June 3rd, he was

banded

> > and we have been having problems with it ever since. He has had

> skin

> > irritations on his forehead and on the left side of his head

where

> > the band fastens. He had been in the band for 2 days at the most

> > because I have had to allow for his skin to recover. He had to

be

> > fitted for a new band this past Friday because now they are

saying

> > that he has outgrown the band before he was really able to wear

it

> > for extensive amount of time. I have been very frustrated with

> this

> > entire thing and I'm at the point where if it doesn't work this

> time

> > around, I will abandon the treatment. Any thoughts/ideas??

[Guest guest]

tess congrats on your weight loss. i am sure you are in a flare after 2

surgeries and moving?!? i hope it subsides soon. i have had that pain in the

neck

before too. i usually get a chiro adjustment. that seems to help me. kathy in il

[Guest guest]

Tess, That is great news on the weight loss! I'm sorry to hear you

hurting, I will keep you in my prayers. You have been through a lot,

so don't be so hard on yourself. I have been going through a lot of

emotional problems myself, so I know how you feel. Take care, Tawny

> Hi Friends...My bariatric surgery continues to help...I am down 74

> pounds now since surgery. I'm in quite a flare, but am told this is

> common as when the weight starts coming off one just does more, and

the

> body just says WHOA! I also think the herniated disks are part of

my

> back issues and FMS is all riled up as well.

>

> Emotionally, I am better, thank the Lord. My hormones get all

frenzied

> and I tend to forget I've had 2 major surgerys in 1 year (hyst & DS)

> that both impact hormones. But right now it is better, so I'll

take it!

>

> I am having some sporatic deep pain towards the back of my neck, and

> when it happens, I can feel my pulse beat strongly in that area.

Any

> ideas?

>

> Love to all...

>

> Tess

[Guest guest]

74 pounds is great Tess! Sorry you are in pain, but I'm sure the stress of

moving didn't help any either.

Noreen

[ ] update

Hi Friends...My bariatric surgery continues to help...I am down 74

pounds now since surgery. I'm in quite a flare, but am told this is

common as when the weight starts coming off one just does more, and the

body just says WHOA! I also think the herniated disks are part of my

back issues and FMS is all riled up as well.

Emotionally, I am better, thank the Lord. My hormones get all frenzied

and I tend to forget I've had 2 major surgerys in 1 year (hyst & DS)

that both impact hormones. But right now it is better, so I'll take it!

I am having some sporatic deep pain towards the back of my neck, and

when it happens, I can feel my pulse beat strongly in that area. Any

ideas?

Love to all...

Tess

[Guest guest]

Sorry about your big flare, Tess, but that's a great weight loss! So

many changes for your poor body. The surgeries, the move, family

problems - no wonder you're in a flare. Let's hope that things even out

soon.

How are things on the diabetes front?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] update

> Hi Friends...My bariatric surgery continues to help...I am down 74

> pounds now since surgery. I'm in quite a flare, but am told this is

> common as when the weight starts coming off one just does more, and

the

> body just says WHOA! I also think the herniated disks are part of my

> back issues and FMS is all riled up as well.

>

> Emotionally, I am better, thank the Lord. My hormones get all

frenzied

> and I tend to forget I've had 2 major surgerys in 1 year (hyst & DS)

> that both impact hormones. But right now it is better, so I'll take

it!

>

> I am having some sporatic deep pain towards the back of my neck, and

> when it happens, I can feel my pulse beat strongly in that area. Any

> ideas?

>

> Love to all...

>

> Tess

[Guest guest]

Tess,

Congratulations on your weight loss. Way to go! The pain you describe in

the back of your neck sounds muscular. Could you have done something with

the moving? I think trying heat, and massage to the area would be a good

way to start out.

Terri

[ ] update

> Hi Friends...My bariatric surgery continues to help...I am down 74

> pounds now since surgery. I'm in quite a flare, but am told this is

> common as when the weight starts coming off one just does more, and the

> body just says WHOA! I also think the herniated disks are part of my

> back issues and FMS is all riled up as well.

>

> Emotionally, I am better, thank the Lord. My hormones get all frenzied

> and I tend to forget I've had 2 major surgerys in 1 year (hyst & DS)

> that both impact hormones. But right now it is better, so I'll take it!

>

> I am having some sporatic deep pain towards the back of my neck, and

> when it happens, I can feel my pulse beat strongly in that area. Any

> ideas?

>

> Love to all...

>

> Tess

>

>

>

>

>

[Guest guest]

Tess,

I hope you are feeling better. It¹s not fair that you loose all that weight

and have to deal with more pain because of it. You¹re supposed to be

feeling better! You¹ve been through so much and moving on top of everything

else. Is your neck having spasms? I hope it doesn¹t last long. Neck pain

is so painful.

a

> Hi Friends...My bariatric surgery continues to help...I am down 74

> pounds now since surgery. I'm in quite a flare, but am told this is

> common as when the weight starts coming off one just does more, and the

> body just says WHOA! I also think the herniated disks are part of my

> back issues and FMS is all riled up as well.

>

> Emotionally, I am better, thank the Lord. My hormones get all frenzied

> and I tend to forget I've had 2 major surgerys in 1 year (hyst & DS)

> that both impact hormones. But right now it is better, so I'll take it!

>

> I am having some sporatic deep pain towards the back of my neck, and

> when it happens, I can feel my pulse beat strongly in that area. Any

> ideas?

>

> Love to all...

>

> Tess

>

>

>

>

[Guest guest]

great to hear you are gonna get out tess!!! i am sorry for em's heartbreak

and stress at work. have fun on your concert trip. i still have 5 weeks to plan

for my trip. got my room reserved and ordered my tickets thru the fan club, so

we will be right down front this time. i am getting excited about it!! kathy

in il

[Guest guest]

>

> Tess,

Hi, fome me in okla. Glad to see you are doing well...Have a

good time on holiday...tell your daughter Em that some time you

have to kiss a frog before you find your prince...take care and

bless this group...

[Guest guest]

Tess,....I'm sorry to hear about your friend, I'm glad that your

going to be there for her during the surgery. I hope, and pray that

all will go great on the surgery.

That is cool that you all our going to do a little traveling, and

then see a great concert. That will be good to get out, will make

you feel better.

Sorry, about Emmy's breakup, it is tough when your young. She will

be alright, she has you to help her. I will keep you, and the

family, and your friends in my prayers, Tawny

PS:Have fun on your trip!!

> Hi...just an update. I'm still on weekly Humira injections, and

using a

> Durogesic patch for pain. The Ra/PsA are only mildly agitated, and

the

> FMS flare is about 50% better on most days. There are days when I

> thoroughly enjoy the energy the continuing weight loss has given

> me...and some days the autoimmune problems just are more stubborn, I

> guess.

>

> Monday I leave on a holiday with 2 good friends...we are travelling

to

> Bend, Oregon, and will see Crosby, Stills & Nash at the amphitheatre

> there, and enjoy the high desert country. My best friend has been

dx'd

> with thyroid cancer...her situation is complicated by some other

health

> factors, so she is being treated at the U of W Med Center in

Seattle.

> I'll be travelling with her for her surgery and to be with her those

> days after, the 2nd week of October. I am enormously grateful I am

able

> to travel some now.

>

> My middle daughter many of you know of, Emmy, just went through a

> break-up in the first serious relationship she had. She was pretty

> confused at first, but she is feeling better every day, and seems

to be

> at some peace about it. Work is pretty stressful, so she may look

for a

> different job.

>

> I'm sending love to all, and prayers of hope & health

>

> Tess

[Guest guest]

>

> Tess,

Hi, fome me in okla. Glad to see you are doing well...Have a

good time on holiday...tell your daughter Em that some time you

have to kiss a frog before you find your prince...take care and

bless this group...

[Guest guest]

Tess,

Hi Tess. Have lots of fun at the concert. It seems like you've become lots

more active, which is the best medicine. I'm sorry about your friend's

diagnosis. I'm glad you are able to be there for her. When I moved, I left

3 friends that are battling cancer, and it pains me that I'm not there for

them. I know your friend is glad you will be with her during her sugery.

I'm sorry about Em's breakup, but glad she is taking it well. It's hard to

watch our kids go through such painful experinces. I hope her job hunting

goes well.

a

> Hi...just an update. I'm still on weekly Humira injections, and using a

> Durogesic patch for pain. The Ra/PsA are only mildly agitated, and the

> FMS flare is about 50% better on most days. There are days when I

> thoroughly enjoy the energy the continuing weight loss has given

> me...and some days the autoimmune problems just are more stubborn, I

> guess.

>

> Monday I leave on a holiday with 2 good friends...we are travelling to

> Bend, Oregon, and will see Crosby, Stills & Nash at the amphitheatre

> there, and enjoy the high desert country. My best friend has been dx'd

> with thyroid cancer...her situation is complicated by some other health

> factors, so she is being treated at the U of W Med Center in Seattle.

> I'll be travelling with her for her surgery and to be with her those

> days after, the 2nd week of October. I am enormously grateful I am able

> to travel some now.

>

> My middle daughter many of you know of, Emmy, just went through a

> break-up in the first serious relationship she had. She was pretty

> confused at first, but she is feeling better every day, and seems to be

> at some peace about it. Work is pretty stressful, so she may look for a

> different job.

>

> I'm sending love to all, and prayers of hope & health

>

> Tess

>

>

>

>

>

[Guest guest]

You sound very good, Tess! So nice to hear from you.

Have a great trip with your friends. Wish I could tag along - it's going

to be fun!

I'm very sorry to hear that your friend has thyroid cancer. I hope her

treatment is 100% successful. It's kind of you to be with her and help

her through.

That's too bad about Em's relationship. Hope she can find a better job

and a nice fella soon.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] update

> Hi...just an update. I'm still on weekly Humira injections, and using

a

> Durogesic patch for pain. The Ra/PsA are only mildly agitated, and

the

> FMS flare is about 50% better on most days. There are days when I

> thoroughly enjoy the energy the continuing weight loss has given

> me...and some days the autoimmune problems just are more stubborn, I

> guess.

>

> Monday I leave on a holiday with 2 good friends...we are travelling to

> Bend, Oregon, and will see Crosby, Stills & Nash at the amphitheatre

> there, and enjoy the high desert country. My best friend has been

dx'd

> with thyroid cancer...her situation is complicated by some other

health

> factors, so she is being treated at the U of W Med Center in Seattle.

> I'll be travelling with her for her surgery and to be with her those

> days after, the 2nd week of October. I am enormously grateful I am

able

> to travel some now.

>

> My middle daughter many of you know of, Emmy, just went through a

> break-up in the first serious relationship she had. She was pretty

> confused at first, but she is feeling better every day, and seems to

be

> at some peace about it. Work is pretty stressful, so she may look for

a

> different job.

>

> I'm sending love to all, and prayers of hope & health

>

> Tess

[Guest guest]

,

looks SO adorable in her costume, I LOVE her cheeks. She

makes a great little pumpkin!

I'm so sorry to hear that isn't making better progress. That

raises a red flag to me. At her age she SHOULD be making some really

nice progress.

>

> Hi,

> Sorry I havent written... my computer was having some issues!

> went back up to Nopco yesterday because her helmet was

still

> too tight and leaving those dark red sores. They adjusted it. This

> time it seems to be fitting good. She hasnt had any marks today.

> They still are hoping she begins to progress better. She hasn't

> really had any growth spurts yet though. I also added a picture of

> her in the Halloween folder.

>

> adorable 's mom - 8 mos. old today

[Guest guest]

: I'm glad you finally got the helmet adjusted properly. I'm sure

its more comfortable for now. She is adorable in her little pumpkin

costume!

Beth in Charlotte

Mom of Braden ( 8 1/2 months)

plagio/brachy DOC band 10/8/04

>From: " " <angembal@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: update

>Date: Thu, 28 Oct 2004 18:28:35 -0000

>

>

>Hi,

>Sorry I havent written... my computer was having some issues!

> went back up to Nopco yesterday because her helmet was still

>too tight and leaving those dark red sores. They adjusted it. This

>time it seems to be fitting good. She hasnt had any marks today.

>They still are hoping she begins to progress better. She hasn't

>really had any growth spurts yet though. I also added a picture of

>her in the Halloween folder.

>

>adorable 's mom - 8 mos. old today

>

>

>

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

[Guest guest]

Hi . I’m so glad ’s

band is fitting better now. I agree with that she should be making more

progress by now. I hope you get some answers to that soon. Keep in touch and

let us know how things are going.

Becky (’s mom) in Pittsburgh,

PA

update

Hi,

Sorry I havent written... my computer was having

some issues!

went back up to Nopco yesterday because

her helmet was still

too tight and leaving those dark red sores. They

adjusted it. This

time it seems to be fitting good. She hasnt had

any marks today.

They still are hoping she begins to progress

better. She hasn't

really had any growth spurts yet though. I also

added a picture of

her in the Halloween folder.

adorable 's mom - 8 mos. old today

For more

plagio info