Update

[Guest guest]

How wonderful..only 4 more weeks. Sounds like is rounding

really nicely. Can't wait to see " Doc Grad! "

Lori and on docbanded 6/23/03 9 more weeks to go " whoo hoo "

> Hello all:

> We just got home from the ortho, so I thought that I would give you

> all an update. has been in her STARband for almost 8 weeks

> (friday), and even without having any major adjustments her

assymetry

> has gone from 6mm to about 2mm and her head circumfrence is 143

from

> 140. He thinks that at this rate, we have about 4 more weeks!!!!

> She looks sooo much better, and I would LOVE to be done, but he

> thinks we still have some correction that can be made ('specially

if

> she grows!) Just wanted to let you all know.

> Randi and

[Guest guest]

Wow Randi, that is such great news! will be a grad in no time! Thanks for sharing.

Jen- TXTrentyn- 14 mo. DocBand 06/12/03

update

Hello all:We just got home from the ortho, so I thought that I would give you all an update. has been in her STARband for almost 8 weeks (friday), and even without having any major adjustments her assymetry has gone from 6mm to about 2mm and her head circumfrence is 143 from 140. He thinks that at this rate, we have about 4 more weeks!!!! She looks sooo much better, and I would LOVE to be done, but he thinks we still have some correction that can be made ('specially if she grows!) Just wanted to let you all know.Randi and For more plagio info

[Guest guest]

Debbie,

Hopefully the sweating will ease up soon. How is he doing in band # 2?

I've got my fingers crossed that he gets better soon.

Keep us posted.

--- In Plagiocephaly , " comeaums2000 " <dmsnoopy@e...>

wrote:

> Just thought I would let you know that is doing OK in band

> #2...and so am I. He certainly is sweating a lot more in this

one!

> Guess we were so lucky that it was cool when we got the first one.

> We had a big family get together this weekend and lots of people

saw

> the band for the first time. Luckily everyone was wonderful about

> it - but I did get sick of explaining about it. I felt like I was

> on plagio awareness patrol!

> The hardest thing for us continues to be 's unending

> cold/virus thing! Saw the ped on Tuesday and they started him on a

> week of aerosol tx for wheezing - presumably due to the virus and

> all the awful congestion he has...yuck!

> Thanks for all the support last week. I really had a tough week

and

> it is wonderful to have a place like this to get support. I

> certainly hope that with all this plagio publicity, more parents

> will avoid having to go through this experience..the emotions, the

> guilt, the financial implications...it would be great to see less

> kids need bands!

>

> Debbie ( C's mom-DOCbanded 4-29 and 7-9-03)

[Guest guest]

Debbie,

Thanks for the great update on ! I hope he adjusts soon and that sweating decreases a little. Poor kiddo, hope he's also on the mend from that virus! Good luck and keep us posted!

'mom

[Guest guest]

I sure hope is feeling better soon! Keep us updated, Angie and Jenna update Just thought I would let you know that is doing OK in band #2...and so am I. He certainly is sweating a lot more in this one! Guess we were so lucky that it was cool when we got the first one. We had a big family get together this weekend and lots of people saw the band for the first time. Luckily everyone was wonderful about it - but I did get sick of explaining about it. I felt like I was on plagio awareness patrol!The hardest thing for us continues to be 's unending cold/virus thing! Saw the ped on Tuesday and they started him on a week of aerosol tx for wheezing - presumably due to the virus and all the awful congestion he has...yuck! Thanks for all the support last week. I really had a tough week and it is wonderful to have a place like this to get support. I certainly hope that with all this plagio publicity, more parents will avoid having to go through this experience..the emotions, the guilt, the financial implications...it would be great to see less kids need bands!Debbie ( C's mom-DOCbanded 4-29 and 7-9-03)For more plagio info

[Guest guest]

Debbie, thanks for the update on ! Sounds like he is doing

great. Glad he's not following in the footsteps of and Aiden.

hehe...... Let us know how he is doing. Hey, have you decorated

this band?

Dustie

--- In Plagiocephaly , " comeaums2000 " <dmsnoopy@e...>

wrote:

> Just thought I would let you know that is doing OK in band

> #2...and so am I. He certainly is sweating a lot more in this

one!

> Guess we were so lucky that it was cool when we got the first one.

> We had a big family get together this weekend and lots of people

saw

> the band for the first time. Luckily everyone was wonderful about

> it - but I did get sick of explaining about it. I felt like I was

> on plagio awareness patrol!

> The hardest thing for us continues to be 's unending

> cold/virus thing! Saw the ped on Tuesday and they started him on a

> week of aerosol tx for wheezing - presumably due to the virus and

> all the awful congestion he has...yuck!

> Thanks for all the support last week. I really had a tough week

and

> it is wonderful to have a place like this to get support. I

> certainly hope that with all this plagio publicity, more parents

> will avoid having to go through this experience..the emotions, the

> guilt, the financial implications...it would be great to see less

> kids need bands!

>

> Debbie ( C's mom-DOCbanded 4-29 and 7-9-03)

[Guest guest]

Sorry to hear that, ! I hope the MTX helps you.

[ ] update

> Hi everyone,

> I have been in quite a bit of pain lately. Over the weekend I could

hardly put any weight on my one foot. I called my rheumy today and he

got me in. The have now added Methotextrate to my list. The nurse

showed me how to give myself the shot so next week I get to try that

one. The doctor also gave me cortisone shot in my ankle. He also had a

bunch of blood work done to check my SED rate and ANA (I think it was).

I also get to go in every 4 weeks for blood work due to the

Methotextrate. LOL Just so it helps!

>

>

> http://albums.photo.epson.com/j/AlbumList?u=4096322

[Guest guest]

I hope the mtx helps . My ankle does the same thing so I can really

sympathize. The cortisone shot may give you relief.

a

> Hi everyone,

> I have been in quite a bit of pain lately. Over the weekend I could hardly

> put any weight on my one foot. I called my rheumy today and he got me in.

> The have now added Methotextrate to my list. The nurse showed me how to give

> myself the shot so next week I get to try that one. The doctor also gave me

> cortisone shot in my ankle. He also had a bunch of blood work done to check

> my SED rate and ANA (I think it was). I also get to go in every 4 weeks for

> blood work due to the Methotextrate. LOL Just so it helps!

>

>

> http://albums.photo.epson.com/j/AlbumList?u=4096322

[Guest guest]

you sound like me!! i was thinking that we are going to have a slow day at

the office ( i work for a podiatrist) maybe i should get a shot today. my foot

has been bothering me for a couple days now. i'll bring it up and if he gets

bored and feel charitable maybe he'll do that. although since i'm on prednisone

(15 mg, taper. supposed to be dropping to 10 but having problems and think i

should stay here a couple more days) wonder if it's such a good idea to flood

my body. we'll see what he says. i also want to be able to mow my grass today,

we are supposed to have a dry couple hours today. maybe i'll wait until

later in the week. maybe if the weather clears up (ha!!) i won't hurt so bad. i

just turned down a job offer. they only offered $6/hr! i have another job

interview a week from thursday and it is right in the hospital around the

corner. of

coarse i'd be just as happy if this job would work out. the nurses are pretty

unhappy thought and if he loses them, i don't know how he will get by.

confused kathy in il

[Guest guest]

hang in there tess. it's almost over. i love you too kathy in il

[Guest guest]

hi Tess, are you getting my messages? they keep coming back as

undeliverable...marge

[ ] update

> Hi Sweet People...I'm having a hard time with the ra & sjorgren's. I

> feel like I have a toothache in my bones...I can take vicodan but no

> other NSAID til after my hyst. Vicodin is little help...I'm talking to

> my pcp about it but I don't think there's anything to do. My mouth is

> so dry my tongue sticks to the roof of my mouth causing difficulty

> talking, and the littlest amount of liquid can cause choking and

> coughing. I'm getting things ready for when I get home from the

> hospital...there are some really helpful websites regarding

> hysterectomies with lots of tips. Some really nice people there, too.

>

> When I'm home from the hospital I'm going to look into some moisture

> improving medicine for sjogren's, and in Oct. my rheumy wans to revisit

> the idea of a DMARD.

>

> I have a pre-admit clinic appt. at the hospital August 12, then surgery

> the 18th. I've had a few bumpy times thinking about that, but mostly

> I'm ok. I'm glad you all are praying for me. Thank you so much for

> your kindnesses and love.

>

> I'm on a lighter exercise routine because of the flare. That has

> bothered me a great deal. Please pray that I pick things up as soon as

> the Dr. allows after surgery. I can continue some very light upper body

> exercises shortly after surgery, it's really important I keep it all up.

>

> I love you all....

>

> Tess ((((((((((((RA Family)))))))))))

>

>

>

>

[Guest guest]

Tess,

I had a hysterectomy when I was 39, 9 yrs. ago. If you have any specific

questions or if there is anything I can do to help you through, please let me

know.

tess_northwest@... wrote:

Hi Sweet People...I'm having a hard time with the ra & sjorgren's. I

feel like I have a toothache in my bones...I can take vicodan but no

other NSAID til after my hyst. Vicodin is little help...I'm talking to

my pcp about it but I don't think there's anything to do. My mouth is

so dry my tongue sticks to the roof of my mouth causing difficulty

talking, and the littlest amount of liquid can cause choking and

coughing. I'm getting things ready for when I get home from the

hospital...there are some really helpful websites regarding

hysterectomies with lots of tips. Some really nice people there, too.

When I'm home from the hospital I'm going to look into some moisture

improving medicine for sjogren's, and in Oct. my rheumy wans to revisit

the idea of a DMARD.

I have a pre-admit clinic appt. at the hospital August 12, then surgery

the 18th. I've had a few bumpy times thinking about that, but mostly

I'm ok. I'm glad you all are praying for me. Thank you so much for

your kindnesses and love.

I'm on a lighter exercise routine because of the flare. That has

bothered me a great deal. Please pray that I pick things up as soon as

the Dr. allows after surgery. I can continue some very light upper body

exercises shortly after surgery, it's really important I keep it all up.

I love you all....

Tess ((((((((((((RA Family)))))))))))

[Guest guest]

Tess,

I'm sorry you're feeling so bad and the sjogrens is affecting you so much.

Cotton mouth is no fun. I'm very anxious for you to get this surgery over

with so that you can get medication for the RA and sjogrens. I know how

worrisome all of this is. In a few weeks, it will be over and you can

continue on your journey for better health.

a

> Hi Sweet People...I'm having a hard time with the ra & sjorgren's. I

> feel like I have a toothache in my bones...I can take vicodan but no

> other NSAID til after my hyst. Vicodin is little help...I'm talking to

> my pcp about it but I don't think there's anything to do. My mouth is

> so dry my tongue sticks to the roof of my mouth causing difficulty

> talking, and the littlest amount of liquid can cause choking and

> coughing. I'm getting things ready for when I get home from the

> hospital...there are some really helpful websites regarding

> hysterectomies with lots of tips. Some really nice people there, too.

>

> When I'm home from the hospital I'm going to look into some moisture

> improving medicine for sjogren's, and in Oct. my rheumy wans to revisit

> the idea of a DMARD.

>

> I have a pre-admit clinic appt. at the hospital August 12, then surgery

> the 18th. I've had a few bumpy times thinking about that, but mostly

> I'm ok. I'm glad you all are praying for me. Thank you so much for

> your kindnesses and love.

>

> I'm on a lighter exercise routine because of the flare. That has

> bothered me a great deal. Please pray that I pick things up as soon as

> the Dr. allows after surgery. I can continue some very light upper body

> exercises shortly after surgery, it's really important I keep it all up.

>

> I love you all....

>

> Tess ((((((((((((RA Family)))))))))))

>

>

>

>

[Guest guest]

NOoooooo! Sorry that things haven't been going your way, Kathy. We've

got to get you back on that " great " track.

I hope you do quit tomorrow. You can tell that guy from me that he's a

pig. I'm not that far. Maybe I should come and do it myself, LOL.

Good luck on that interview on Tuesday.

[ ] update

> ok remember me doing great?!?! well i am sitting here in pain from my

neck to

> my feet. i am on 10 mgs prednisone for the 5th day. i am running 99.4

(normal

> 97.9) i wanted to quit my job today. but i want him there when i do it

and he

> was already gone. but i have forwarned the others that i will come in

monday

> and plan to pick up my stuff and leave. i can't work like this

anymore. it'd

> be different if he were suffering like the rest of us but he's out

golfing,

> shopping, eating out. treating people. while his employees have been

going to the

> food pantry, have no elec, and 5 day eviction notices. i have another

offer.

> but it is for 30 hrs a week. i know in my heart i can't do that. if

they will

> not consider hiring me and another part timer that will not work. i

have

> another interview on tuesday. where i might only have to work 15-20

hrs a week. so

> i'd rather hold out for that. anyway. thats what's new here. i had to

borrow

> money from my mom in law to buy prescriptions. while she was here my

son came

> home and double parked for less than 5 minutes, he got a $50 parking

ticket!!!

> so what should've cost me 50 cost 100!! (car and plates still in my

name!!)

> just another day in the life!!!! kathy in il

[Guest guest]

thanks gina. i'm working on it.

[Guest guest]

thanks but as far as i know he doesn't!!

[Guest guest]

Hey, if this guy has an email address, we'll all tell him off.

Noreen

[ ] update

> ok remember me doing great?!?! well i am sitting here in pain from my

neck to

> my feet. i am on 10 mgs prednisone for the 5th day. i am running 99.4

(normal

> 97.9) i wanted to quit my job today. but i want him there when i do it

and he

> was already gone. but i have forwarned the others that i will come in

monday

> and plan to pick up my stuff and leave. i can't work like this

anymore. it'd

> be different if he were suffering like the rest of us but he's out

golfing,

> shopping, eating out. treating people. while his employees have been

going to the

> food pantry, have no elec, and 5 day eviction notices. i have another

offer.

> but it is for 30 hrs a week. i know in my heart i can't do that. if

they will

> not consider hiring me and another part timer that will not work. i

have

> another interview on tuesday. where i might only have to work 15-20

hrs a week. so

> i'd rather hold out for that. anyway. thats what's new here. i had to

borrow

> money from my mom in law to buy prescriptions. while she was here my

son came

> home and double parked for less than 5 minutes, he got a $50 parking

ticket!!!

> so what should've cost me 50 cost 100!! (car and plates still in my

name!!)

> just another day in the life!!!! kathy in il

[Guest guest]

,

Your niece continues to be in my prayers. I'm sorry that she is going

through this scary ordeal. Hopefully they will soon get to the bottom of

this.

a

> My niece was scheduled for an MRI yesturday. However, the medication they

> gave her to calm her down only made her aggitated so they were unable to do

> it. My sister said she had a tough time getting Allissa to calm down.

>

> The eeg shows a suspecious spot on the back of the brain. The doctor wants

> the results of the MRI before making any decisions regarding medication.

> There is a possibility that this is something old and not connected with the

> present situation.

>

> When she was 1 1/2 months old she got very sick and had blood on the brain.

> The problem took care of itself and there hasn't been any other problems until

> now.

>

> They will be sedating her today when they do the MRI. They may go home today

> if the test is done early enough, otherwise they may end up staying one more

> night.

>

>

> http://albums.photo.epson.com/j/AlbumList?u=4096322

[Guest guest]

, that's wonderful! Ah, the power of prayer...

Peace,

Judi

--- In , " Pederson " <linda@7...>

wrote:

> My niece went home today! The MRI came back normal. The doctor is

putting her on medication for seizures. The eeg showed something

suspecious and the decision was to put her on medication for now.

They will be monitoring her closely.

>

>

> http://albums.photo.epson.com/j/AlbumList?u=4096322

>

>

[Guest guest]

HI ,

Thank you for the update. I will continue to be in

prayer for this little one and her parents.

Joy

[ ] update

My niece was scheduled for an MRI yesturday. However, the medication they

gave her to calm her down only made her aggitated so they were unable to do it.

My sister said she had a tough time getting Allissa to calm down.

The eeg shows a suspecious spot on the back of the brain. The doctor wants

the results of the MRI before making any decisions regarding medication. There

is a possibility that this is something old and not connected with the present

situation.

When she was 1 1/2 months old she got very sick and had blood on the brain.

The problem took care of itself and there hasn't been any other problems until

now.

They will be sedating her today when they do the MRI. They may go home today

if the test is done early enough, otherwise they may end up staying one more

night.

http://albums.photo.epson.com/j/AlbumList?u=4096322

[Guest guest]

Dear ,

I am glad your niece got to go home. I also hope the meds

work for her and will continue to pray for a complete healing,

Joy

[ ] update

My niece went home today! The MRI came back normal. The doctor is putting

her on medication for seizures. The eeg showed something suspecious and the

decision was to put her on medication for now. They will be monitoring her

closely.

http://albums.photo.epson.com/j/AlbumList?u=4096322

[Guest guest]

Great new !!! I hope the meds help.

a

> My niece went home today! The MRI came back normal. The doctor is putting

> her on medication for seizures. The eeg showed something suspecious and the

> decision was to put her on medication for now. They will be monitoring her

> closely.

>

>

> http://albums.photo.epson.com/j/AlbumList?u=4096322

>

>

[Guest guest]

I'm happy your niece is back home, . I hope they can determine what

happened in the very near future and that she has no further trouble.

[ ] update

My niece went home today! The MRI came back normal. The doctor is putting

her on medication for seizures. The eeg showed something suspecious and the

decision was to put her on medication for now. They will be monitoring her

closely.

[Guest guest]

Althea, although that isn't good news about your mother, that's a great

report about you!

I'm very happy to hear that your surgery helped you so much.

Have you told your physician that the Remicade starts pooping out on you

early? Maybe you could have the infusions closer together.

[ ] update

> Hello all!

> I have not had any time to post - I have been so extremely busy. I

> got a phone call in October after my surgery that my Mother needed me

> in NY so I dropped everything and rushed to support her. Since that

> time, I have been helping her and flying back here for doctor's

> appointments. I leave here on Thanksgiving night to fly back to NY

> again to be there until Jan when I again come back for my DR's appt.

>

> I am doing very well. I don't want to jinx anything but my surgery

> was a success. I went from level 8-10 pain to level 2-3 pain. My

> pain now is mainly my RA pain; my neck, shoulder, and arm pain is

> very limited. I have some stiffness in my neck but I put that to it

> is still healing.

>

> I had my remicade treatment Monday and my swelling has greatly

> reduced and my flu like achiness has gone. I wish that it(remicade)

> would work for the whole 8 weeks but about 6 1/2 weeks it starts

> wearing off fast. I am thankful though for the help it gives me.

>

> I am so busy - the house when I got back was a disaster so I have

> been cleaning and cleaning...I have to start looking for a house for

> my Mother here - that is miles and miles of driving and looking and

> tiring. I found one that is perfect but it has a contract on it.

> There is a chance that that contract will fall through and then we

> will have a chance at it but then I have to get her house in NY

> sold. Too much to do.

>

> I miss being able to write to all of you but when I am with her I can

> read what you are writing but have no time to write back as we have

> so much to do there to get her ready to move.

>

> I hope you all have a great holiday season and I want you all to know

> that you are in my prayers every day.

>

> God bless,

> Althea

[Guest guest]

Aww , what a cute little man indeed!! Thanks for sharing his

picture.

My plagio Abby also has a significant speech delay. She turns 4 in

March. She sees a speech therapist thru our local school district

two times a week which began this past September. I did ask our

therapist if she had heard of plagio affecting speech, but of course,

she hadn't even heard of plagio. One thing I did find interesting,

was that speech comes from the LEFT side of your brain, Abby's plagio

is on her RIGHT side (she has remaining flatness/assymetries to this

day and sadly always will *sigh*). I will always wonder if her

plagio has contributed to her speech delays, but that's just

something that you can't really prove ya know? Speech delays are

pretty common so who knows??? Anyhow, she is definitely improving

with her speech which I'm thrilled about, slowly but surely!!

Please keep us posted on his progress and let us know what the Dr

says about his delay(s).

Thanks again for sharing your painful story with us. It's appreciated.

Debbie Abby's mom 3/1/00

MI

> 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