new member

Report post · February 24, 2003

Teri,

It really is not all that common for a reaction like Jadon is having, but, there are a few kids that I can recall that didn't care one bit for it and did take some time adjusting to it. I hope that is your case. Does the band look at all too tight to you? It should be a little loose to start out with, they want to give a little room for growth to occur, and then it gets snug so that they can shave areas to work on the flattened areas. Try to keep him as cool as possible, watch out for those red marks, they should be gone within an hour, if not, time for an adjustment. Check the fit of the ears, nothing pinching, or covering going on. Good luck to you and I hope your next post reads that your little one is not crying anymore and has adjusted. Any concerns you have, don't hesitate to call that ortho! Keep us posted!

cindy

' mom

Report post · March 26, 2003

Hello, Marisa! I'm not aware of any parents of children with JDM in our

group, but we do have many silent members. Good luck to your son and

family.

[ ] New Member

> Hi:

> My name is Marisa. My son was diagnosed with JDM 6 years ago.

> Hoping to meet other parents who have children with JDM.

> Best regards,

> Marisa

Report post · April 24, 2003

Please let me know how to help someone join this group. I thought they

could go to the neuroimmunedr website but that is not taking them anywhere.

Can someone pls post the link, I dont remember it.

Thanks a ton

Sara

Report post · April 24, 2003

They should go to www.nids.net and click on " Join our discussion group " near

the bottom.

re:new member

Please let me know how to help someone join this group. I thought they

could go to the neuroimmunedr website but that is not taking them anywhere.

Can someone pls post the link, I dont remember it.

Thanks a ton

Sara

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

Report post · April 28, 2003

Welcome Dom. Sorry that you haven't been feeling so hot and hope that you

soon will find out what is going on. Being such an active person, it's

difficult to have so much pain. I'm hoping you get a diagnosis soon so that

you can start treatment and feel better.

a

> Hello,

> I thought I better join this group as I think I will be needing it ;o)

> My name is Dominic, I am 30 years old, live in the UK and I am

> waiting on my follow up appointment with the reumatologist, to see

> what I have....

> They are thinking RA, Reumatic fever, Chrones, Ulcerative Colitus or

> a Viral Infection, But my money is on RA or RF as both apparently run

> in the family?

> Started with joint pain in my Hips and spread to all joints within 3

> weeks, along with swelling and Fever some nights, took me 10 minutes

> and a load of pain just to roll over in bed !

> Well I dont know what else to say really, its all a bit new to me,

> This Being ill stuff? (I dont drink, dont smoke, fit, active in many

> sports ?)so I guess I`ll just sit quietly at the back and listen for

> a while ;o)

> Cheers

> Dom

>

Report post · April 28, 2003

Hi Dom, welcome to the group!

We're a wacky bunch some times, but there's a lot of good information

and help and support available here.

Sounds like you're having a very uncomfortable time right now, and I

hope the rheumatologist is able to give you some definite diagnosis

and treatment. In one way or another, at one time or another, we

have been through or are going through what you are.

I lived in England for a short time in Kent in the early 70's,

working for Abbott Laboratories. I haven't been back in many years,

but would love to take my husband some time...when I can drag him

away from his beloved Denmark trips!

I am 57, married 27 years, have what is yet to be diagnosed as

Dercum's disease and fibromyalgia, and am currently recuperating from

a broken ankle. Any suggestions on how to dress up a powder blue

cast are gratefully accepted. I am currently working as church

secretary, filling in for my daughter who had triplets March 5.

Peace and grace,

Judi in Indiana

Report post · April 29, 2003

Dominic: Welcome to the group, it is a good place to be. I have just recently

been diagnosed also. It's nice to know that there are others sharing information

and support that help you know you are not alone. It is very hard to go thru the

diagnosis process, and know that there is something wrong, and just the waiting

is enough to drive anyone crazy. I know for me it was a long and at times very

exhausting process. I thought no one would ever help me, but they finally did.

Just hang in there, and things will come together.....Sheri

cr500dom <dom.mitchell@...> wrote:Hello,

I thought I better join this group as I think I will be needing it ;o)

My name is Dominic, I am 30 years old, live in the UK and I am

waiting on my follow up appointment with the reumatologist, to see

what I have....

They are thinking RA, Reumatic fever, Chrones, Ulcerative Colitus or

a Viral Infection, But my money is on RA or RF as both apparently run

in the family?

Started with joint pain in my Hips and spread to all joints within 3

weeks, along with swelling and Fever some nights, took me 10 minutes

and a load of pain just to roll over in bed !

Well I dont know what else to say really, its all a bit new to me,

This Being ill stuff? (I dont drink, dont smoke, fit, active in many

sports ?)so I guess I`ll just sit quietly at the back and listen for

a while ;o)

Cheers

Dom

Report post · April 29, 2003

,

I have heard playing peek a boo a few times before might help with the stocking part, and of course any comfy items, lollipops, bottle, paci, I would try a musical toy since she really can only hear it and not play with it well. Good luck and keep us posted!

'mom

Report post · April 29, 2003

In a message dated 4/29/2003 4:31:52 PM Eastern Daylight Time, trmac46@... writes:

I think talking and cooing helped most, along with the

pacifier.

Teri,

Good tip! I forgot how I started (nervously) singing a favorite lullaby to during the casting- at that point anything sounded better than the crying :(t It was over quick, just like you said!

'mom

Report post · April 29, 2003

They have toys there already that can get plaster on them so that

is taken care of-just have a bottle and a binky ready and have both

you and the daddy there one for each side-practice up on the songs

you will sing and it really isnt that bad at all it doesnt take

long and they are really gentle and loving to them. you will be

there the whole time too-dress her in easy to de-clothe clothes-cuz

as soon as you get there they undress to the diaper!!

this really is the easier part of the whole process believe it or

not!!

good luck-

Sheila

mom to Josh banded 17 March

--- In Plagiocephaly , " orthochik11 "

<orthochik11@a...>

wrote:

> Hi everyone! I'm a new member here, and I have some questions. My 8

> month old daughter andra was finally diagnosed with

> plagiocephaly. (It's taken a while because I was always told that it

> would get better on it's own, which it has not). Anyway, she's being

> casted for her helmet on Thursday. I spoke with the orthoist already

> and he told me that they take about 30 minutes just to get to know

> her before the casting. I was wondering if anyone had any helpful

> hints on making the casting process as stress-free as possible for

> andra? I'm going to bring plenty of toys to occupy her and some

> food, but is there anything else that will help? I'd appreciate any

> advice. Thank you in advance for your help and I look forward to

> chatting with the other members of the group!

>

Report post · April 29, 2003

Welcome to the Group! My daughter is 8 months also. She was born on

8-24-02. She also just received her helmet on the 17th of April so

we are in the beginning stages ourself. Mackenzie hated the whole

casting process but once he got started, it took around 15 minutes to

complete. First they put the sock over her head and she didn't like

that much then by the time I got her calmed down from that, they put

the casting on. It dried very quickly and once he took it off, she

was fine. I held her sitting up on my knee so it would have been

hard for her to play with toys and there just wasn't any calming her

down until it was finished. She was very mad! Hope it goes well

and let us know what happens.

Mom to Mackenzie

Started treatment 4-17-03

> Hi everyone! I'm a new member here, and I have some questions. My 8

> month old daughter andra was finally diagnosed with

> plagiocephaly. (It's taken a while because I was always told that

it

> would get better on it's own, which it has not). Anyway, she's

being

> casted for her helmet on Thursday. I spoke with the orthoist

already

> and he told me that they take about 30 minutes just to get to know

> her before the casting. I was wondering if anyone had any helpful

> hints on making the casting process as stress-free as possible for

> andra? I'm going to bring plenty of toys to occupy her and some

> food, but is there anything else that will help? I'd appreciate any

> advice. Thank you in advance for your help and I look forward to

> chatting with the other members of the group!

>

Report post · April 29, 2003

Hi ,

Welcome to the group! Bring a lollipop, that seems to help a lot of

parents and babies here. The casting is really over pretty fast. What

kind of bane will andra be getting? Please let us know how the

casting goes.

Good luck,

> Hi everyone! I'm a new member here, and I have some questions. My 8

> month old daughter andra was finally diagnosed with

> plagiocephaly. (It's taken a while because I was always told that

it

> would get better on it's own, which it has not). Anyway, she's

being

> casted for her helmet on Thursday. I spoke with the orthoist

already

> and he told me that they take about 30 minutes just to get to know

> her before the casting. I was wondering if anyone had any helpful

> hints on making the casting process as stress-free as possible for

> andra? I'm going to bring plenty of toys to occupy her and some

> food, but is there anything else that will help? I'd appreciate any

> advice. Thank you in advance for your help and I look forward to

> chatting with the other members of the group!

>

Report post · April 29, 2003

,

Thank you for the welcome and the advice on casting. Hopefully we

won't have too much trouble. It sounds like the orthoist is going to

make it as easy as possible on andra. She's going to be getting a

starband. I look forward to talking with you again!

Report post · April 29, 2003

Well, I sent a reply but it must have been deleted. Anyway, welcome

to the group! My daughter is also 8 months old, born 8-24-02 and she

just received her helmet on the 17th of April. The casting doesn't

take long at all but that didn't matter to Mackenzie. It made her

pretty mad! I had to hold her in my lap while he did the casting so

it was kind of hard for her to play with any toys. But like I said,

it will be over in no time so don't worry. Let us know how it went.

There's alot of great people on this board to give information and

support!

Mom to Mackenzie

Starte Treatment 4-17-03

> Hi everyone! I'm a new member here, and I have some questions. My 8

> month old daughter andra was finally diagnosed with

> plagiocephaly. (It's taken a while because I was always told that

it

> would get better on it's own, which it has not). Anyway, she's

being

> casted for her helmet on Thursday. I spoke with the orthoist

already

> and he told me that they take about 30 minutes just to get to know

> her before the casting. I was wondering if anyone had any helpful

> hints on making the casting process as stress-free as possible for

> andra? I'm going to bring plenty of toys to occupy her and some

> food, but is there anything else that will help? I'd appreciate any

> advice. Thank you in advance for your help and I look forward to

> chatting with the other members of the group!

>

Report post · April 29, 2003

Hi there ! and have covered it pretty well

here. The only thing I would add to your list is a camera. The

casting is the hardest part, right after making the decision to band

all together. After the casting, IT should be smooth sailing. Well,

then you have to decorate, but that is fun. Let us know how she does.

Dustie

> Hi everyone! I'm a new member here, and I have some questions. My 8

> month old daughter andra was finally diagnosed with

> plagiocephaly. (It's taken a while because I was always told that

it

> would get better on it's own, which it has not). Anyway, she's

being

> casted for her helmet on Thursday. I spoke with the orthoist

already

> and he told me that they take about 30 minutes just to get to know

> her before the casting. I was wondering if anyone had any helpful

> hints on making the casting process as stress-free as possible for

> andra? I'm going to bring plenty of toys to occupy her and some

> food, but is there anything else that will help? I'd appreciate any

> advice. Thank you in advance for your help and I look forward to

> chatting with the other members of the group!

>

Report post · April 29, 2003

HI ,

Welcome!

I just went with my son, who will be 8 mos. om the 30th, to get

cast 2 weeks ago today, it went really fast. The ortho spent a few

minutes talking to him while setting up the equipment and tools,

after they placed the sock over 's head the process was over in

about 5-6 minutes. Our ortho worked really fast and removed the cast

as soon as it was " soft-set " . whimpered a few times but never

actually cried, and after it was over he even smiled at the ortho. I

think it was much harder for me than it was for him. The pacifier

definitely helped, I wouldn't have been able to use a bottle because

of trying to hold him still or toys because his eyes were covered the

whole time. I think talking and cooing helped most, along with the

pacifier.

Good luck and let us know how everythign went!

Teri, Mom to 7 1/2 mos. STARbandit 4/25/03

Report post · April 29, 2003

Hi & welcome to our group!

You've already rec'd so many great replies, I simply wanted to welcome you and wish you good luck Thursday!! Please let us know how it goes

Debbie Abby's mom DOCGrad

MIorthochik11 <orthochik11@...> wrote:

Hi everyone! I'm a new member here, and I have some questions. My 8 month old daughter andra was finally diagnosed with plagiocephaly. (It's taken a while because I was always told that it would get better on it's own, which it has not). Anyway, she's being casted for her helmet on Thursday. I spoke with the orthoist already and he told me that they take about 30 minutes just to get to know her before the casting. I was wondering if anyone had any helpful hints on making the casting process as stress-free as possible for andra? I'm going to bring plenty of toys to occupy her and some food, but is there anything else that will help? I'd appreciate any advice. Thank you in advance for your help and I look forward to chatting with the other members of the group!For more plagio info

Report post · April 29, 2003

Hi ,

I just read through all the posts you've already received and it seems that all

bases have been covered! :-) Such an informative group of people we have

here!

Let's see - be sure to wear something that you don't mind getting plaster on

and same for andra and anyone else you are bringing along. Toys that

make music or noise are great for providing a distraction.

Good luck and let us know how it goes!

Marci (Mom to )

Oklahoma

--- In Plagiocephaly , " orthochik11 " <orthochik11@a...>