I'm new

[Guest guest]

Hi Sandy Welcome to this group!! I'm glad that you found us too.

I hope you know jut how wonderful it is that your child is getting

the band so young. Treatment should go very quickly! There is alot

of information on this site in the Files, etc. Is getting

casted? All I can tell you is that my guess is that he will tolerate

it just fine, sleep just fine, etc, etc. It is harder on the parent

but with support from your family and friends everything will be just

great. I would love to see a picture of . 4 children, wow

you are Wonder Mommy.

Sue

Colin F.

Starband 6/29

Buffalo, NY

--- In Plagiocephaly , " Sandy " <sandymom1994@y...>

wrote:

> Hello to all!! I'm so glad Christie referred me to this group. My

> son , 4 months, has newly been diagnosed with tort, and

> plagiocephaly. He starts the " band " process on Monday in Indiana.

> I'm not sure what to expect, so any info would be great. He is

also

> going through First Steps to start pt for the tort. We get that

> started on Wed. He has had an MRI, skull x-rays, and a c-spine to

> rule out reasons for this, and everything checked out, and got

ruled

> as tort. At first, they thought he could have cerebral palsy, but

he

> is hitting mile stones somewhat on target. It's hard to know

because

> he is so young and has not hit big milestones yet, sitting pulling

up

> ect... We are the parents of 5 children and we have alot on our

> plate, so finding this support is wonderful. a 10 yr old, 5 yr old,

3

> yr old, 1 yr old and our 4 month old. I'm in Ky,

> anyone else? I'd love to hear from anyone. I'm not to swift on

the

> computer, but I'll get my husband, to post some pics when he

> can. Thanks in advance, and I can't wait to meet you guys!!!Sandy

[Guest guest]

Hi Sandy,

Welcome to the group! You must be very busy with all those little

ones! My 19 month old keeps my busier than I have time for, lol.

How great was diagnosed so young. I'm sure you'll see

great results w/both the PT and helmet. Where will he be getting

his helmet? What is the appt for on Monday--a consult, casting,

etc? Let us know if you're able to get some pics posted.

, mom to Hannah, DOCgrad

Cape Cod, Ma

--- In Plagiocephaly , " Sandy " <sandymom1994@y...>

wrote:

> Hello to all!! I'm so glad Christie referred me to this group. My

> son , 4 months, has newly been diagnosed with tort, and

> plagiocephaly. He starts the " band " process on Monday in

Indiana.

> I'm not sure what to expect, so any info would be great. He is

also

> going through First Steps to start pt for the tort. We get that

> started on Wed. He has had an MRI, skull x-rays, and a c-spine to

> rule out reasons for this, and everything checked out, and got

ruled

> as tort. At first, they thought he could have cerebral palsy, but

he

> is hitting mile stones somewhat on target. It's hard to know

because

> he is so young and has not hit big milestones yet, sitting pulling

up

> ect... We are the parents of 5 children and we have alot on our

> plate, so finding this support is wonderful. a 10 yr old, 5 yr

old, 3

> yr old, 1 yr old and our 4 month old. I'm in Ky,

> anyone else? I'd love to hear from anyone. I'm not to swift on

the

> computer, but I'll get my husband, to post some pics when he

> can. Thanks in advance, and I can't wait to meet you guys!!!Sandy

[Guest guest]

Hi Sandy!

Welcome to the group!

I am glad you found us. I was so thankful when I signed on to this

group everyone hear is very helpful!

I am glad everything checked out with and he is on his way

to get a helmet. He will have a rounder head in no time. It is

wonderful that he is so young, you will catch some great growth spurts.

I am also happy that you will be starting PT to help his Tort. The

younger the better. You should bring some toys to the visit on Monday

for him to look and play with when he gets casted. Also, singing " Old

Mac " helps during the casting process (or his favorite song). It

is only 10-15 minutes long. Once that is done, he should get his helmet

in 2 weeks or less. I hope your Monday visit will go great! Please keep

us posted. Don't forget the camera!

Krissy

ph's mom

Starband 4/28/04

Palm Harbor, FL

P.S. 5 kids!!!!! Boy, I don't know how you do it. I have one and feel

overwhelmed at times!

On Jul 30, 2004, at 10:12 AM, Sandy wrote:

> Hello to all!! I'm so glad Christie referred me to this group. My

> son , 4 months, has newly been diagnosed with tort, and

> plagiocephaly. He starts the " band " process on Monday in Indiana.

> I'm not sure what to expect, so any info would be great. He is also

> going through First Steps to start pt for the tort. We get that

> started on Wed. He has had an MRI, skull x-rays, and a c-spine to

> rule out reasons for this, and everything checked out, and got ruled

> as tort. At first, they thought he could have cerebral palsy, but he

> is hitting mile stones somewhat on target. It's hard to know because

> he is so young and has not hit big milestones yet, sitting pulling up

> ect... We are the parents of 5 children and we have alot on our

> plate, so finding this support is wonderful. a 10 yr old, 5 yr old, 3

> yr old, 1 yr old and our 4 month old. I'm in Ky,

> anyone else? I'd love to hear from anyone. I'm not to swift on the

> computer, but I'll get my husband, to post some pics when he

> can. Thanks in advance, and I can't wait to meet you guys!!!Sandy

>

>

>

>

> For more plagio info

[Guest guest]

Hi Sandy,

Welcome to the group! Where are you going for treatment?

Natasha

--- In Plagiocephaly , " Sandy " <sandymom1994@y...>

wrote:

> Hello to all!! I'm so glad Christie referred me to this group. My

> son , 4 months, has newly been diagnosed with tort, and

> plagiocephaly. He starts the " band " process on Monday in Indiana.

> I'm not sure what to expect, so any info would be great. He is

also

> going through First Steps to start pt for the tort. We get that

> started on Wed. He has had an MRI, skull x-rays, and a c-spine to

> rule out reasons for this, and everything checked out, and got

ruled

> as tort. At first, they thought he could have cerebral palsy, but

he

> is hitting mile stones somewhat on target. It's hard to know

because

> he is so young and has not hit big milestones yet, sitting pulling

up

> ect... We are the parents of 5 children and we have alot on our

> plate, so finding this support is wonderful. a 10 yr old, 5 yr old,

3

> yr old, 1 yr old and our 4 month old. I'm in Ky,

> anyone else? I'd love to hear from anyone. I'm not to swift on

the

> computer, but I'll get my husband, to post some pics when he

> can. Thanks in advance, and I can't wait to meet you guys!!!Sandy

[Guest guest]

Hi!

Welcome. I'm new too - my daughter has been in her band for just

short of one week now (pictures under Miss ). This group is

very helpful.

She had mild tort, but we visited a chiropractor and I believe we

have that resolved (no pt was ordered, etc). The casting process is

stressful in most cases. was very mad - didn't like having

her face covered. It only lasts about 10-15 minutes.

Believe it or not, actually getting and wearing the DOC band was

more stressful to me. Because of her forehead bossing, her band

comes down to (and sometimes past) her eyebrows. It just looks

uncomfortable. We had a harder time adjusting than she did. When

you get the band, you'll have to do " skin checks " every few hours

the first couple of days. is fair skinned and had some

pretty bad red spots. Some would go away, others would fade, some

would seem to stay the same. Cranial Technology told us to watch it

as long as there wasn't any severely red spots or skin breakdown.

After a full day in the band, the red spots started to become fewer

and less intense. I think we also learned that its okay for the

band to move (a little = <1in) and not to tighten the velcro strap

(just close it when the band is fitted). is a tummy sleeper

now, so it took her a little while to adjust the first time she

slept in it. She honestly doesn't seem to notice it though.

The first couple of days will be tough. didn't sleep in her

helmet the first night, but did sleep 10 hours the next night (her

eyes do sometimes swell after a full nights sleep). It really

doesn't seem to bother her, and that's the hardest thing to

accept/understand for me.

That's all I can remember right now, but if you have any questions -

please post them here. This group helped me so much in those first

few worrisome days!

Good luck!

, mom of Miss , 5mths -1wk in DOC band

> > Hello to all!! I'm so glad Christie referred me to this group.

My

> > son , 4 months, has newly been diagnosed with tort,

and

> > plagiocephaly. He starts the " band " process on Monday in

Indiana.

> > I'm not sure what to expect, so any info would be great. He is

> also

> > going through First Steps to start pt for the tort. We get that

> > started on Wed. He has had an MRI, skull x-rays, and a c-spine

to

> > rule out reasons for this, and everything checked out, and got

> ruled

> > as tort. At first, they thought he could have cerebral palsy,

but

> he

> > is hitting mile stones somewhat on target. It's hard to know

> because

> > he is so young and has not hit big milestones yet, sitting

pulling

> up

> > ect... We are the parents of 5 children and we have alot on our

> > plate, so finding this support is wonderful. a 10 yr old, 5 yr

old,

> 3

> > yr old, 1 yr old and our 4 month old. I'm in

Ky,

> > anyone else? I'd love to hear from anyone. I'm not to swift on

> the

> > computer, but I'll get my husband, to post some pics when

he

> > can. Thanks in advance, and I can't wait to meet you guys!!!

Sandy

[Guest guest]

Hello Sandy

Welcome to the group. I'm glad you found us. It is awsome that

is being tx for both tort and plagio this young. Your

Ped must be on the ball. Yeah for him/her.

I'm a Mom that is basicly done with the journey. It was long, and a

lot of work, but when you get there you will be sooo happy and proud,

and you will not know what to do with all the time you will have

spare. Guess I'm just trying to say you will get there.

Good luck at your appointment tomorrow and let us know how it went.

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad

PS: Casting is not the greatest experience, but kids are not hurt,

they are mad! Plus it's only a few minutes of their young lives.

Good luck

--- In Plagiocephaly , " Sandy " <sandymom1994@y...>

wrote:

> Hello to all!! I'm so glad Christie referred me to this group. My

> son , 4 months, has newly been diagnosed with tort, and

> plagiocephaly. He starts the " band " process on Monday in Indiana.

> I'm not sure what to expect, so any info would be great. He is

also

> going through First Steps to start pt for the tort. We get that

> started on Wed. He has had an MRI, skull x-rays, and a c-spine to

> rule out reasons for this, and everything checked out, and got

ruled

> as tort. At first, they thought he could have cerebral palsy, but

he

> is hitting mile stones somewhat on target. It's hard to know

because

> he is so young and has not hit big milestones yet, sitting pulling

up

> ect... We are the parents of 5 children and we have alot on our

> plate, so finding this support is wonderful. a 10 yr old, 5 yr old,

3

> yr old, 1 yr old and our 4 month old. I'm in Ky,

> anyone else? I'd love to hear from anyone. I'm not to swift on

the

> computer, but I'll get my husband, to post some pics when he

> can. Thanks in advance, and I can't wait to meet you guys!!!Sandy

[Guest guest]

Hello everyone! Let me just dive in-

I just turned 27, and have recently been diagnosed with RA. It's been

absolutely horrible. I don't know how people are able to deal with

the pain on a daily basis. I guess I'm in the early stages of

treatment, the stage that doesn't work, or takes a while to work I

guess. My doctor basically put me on some med's and said let's try to

put it into remission, it's only been a few weeks on the med's but

there's been no change in how swollen I am, or how much pain I'm in,

or the feelings of just wanting to off-myself because I don't think I

can deal with it another day. I don't have insurance, so I don't

have a rhuemy yet, I'm trying for medicaid and possibly disability. I

feel really alone and in the dark about the whole thing, and in so

much pain I can't really focus on anything but the fact I'll be

dealing with this for the rest of my life. If anyone could tell me

about the beginning of their treatment, how things are day to day, if

the pain ever really stops, if things are ever " normal " again for

them... Pretty much any information would be great.

Thank you all,

[Guest guest]

Hello!

I'm was 29 when I was diagnosed, so I know what your going through. The first

thing my rheumotolgist said is that it's going to take time, but we're going to

find a medication that works for you and get you into remission. He had a very

positive attitude, which I found very reassuring. He also said that I'm going

to have to be patient because it takes a good amount of time for these drugs to

kick in (if in fact they do work for you). Sure enough, I ended up finding a

combination of medications that works for me and I'm light years better than

what I was. I'm 31 now, and well on my way to remission. So, I'm here to tell

you that it can happen and not to lose hope. I still can't believe that I made

it through all of that pain, especially while taking care of two young active

children. I know how hard it is taking all that medication and seeing no

results. For me, this was the first time in my life that I've gone to the

doctor and not walked away with a prescription (think of antibiotics) that was

going to cure me. Big change!!!

I don't know if your taking prednisone, but that is something that can be used

to get a flare under control (or at least make you a bit more comfortable) until

you find a medication that will work to get your disease under control.

You said that you don't have insurance, but maybe you'd be able to work with a

rheumotogist to get his fee lowered (especially if you agree to pay at the time

of the visit) so you'd be able to see somebody.

There's a lot of information available about RA, so research it out. , the

moderator of the group, is constantly providing information. For some of the

really expensive drugs, there are patient assistance programs, so be sure to ask

your doctor about those if they were to prescribe one of those for you.

HTH,

Lori

[Guest guest]

Hi War_wick (what's your first name?). Welcome to the group. I am

sorry that you are feeling so horrible. I know the pain can be

overwhelming at times, but it does get better. There are so many meds

out there - its a matter of finding the right combination of meds that

will work for you. What meds did your doctor put you on? Can you call

and ask for some rescue meds for the pain? Sometimes it can take 6-8

weeks for a med to work.

It is important that you find a Rheumatologist. Were you working prior

to your diagnosis - or are you still working? If you think you should

apply for SSD, don't delay. It can be a long process. They give you

the option of applying for SSDI at the same time - that one is based

on your income and designed to help you along in the process while

your disability case is being reviewed. I don't have insurance either,

so I know how daunting this all seems. There are a lot of resources

out there to help you. I get discounts on my prescriptions at

www.yourrxcard.com - it helps to take a bite out of the cost. My

Rheumatologist also has a discount plan for patients that don't have

insurance - I pay $50 per visit.

As far as if things are ever " normal " again, I personally think that

" normal " is a rather subjective word that varies with each person as

they perceive their particular circumstances. For me, I've had to

reinvent my " normal " . That is not necessarily a bad thing - just

different. Hang in there. Don't give up. This CAN be managed. It is

NOT a death sentence. You can do this! Keep us posted.........Doreen

>

> Hello everyone! Let me just dive in-

> I just turned 27, and have recently been diagnosed with RA. It's

> been absolutely horrible. I don't know how people are able to deal

> with the pain on a daily basis. I guess I'm in the early stages of

> treatment, the stage that doesn't work, or takes a while to work I

> guess. My doctor basically put me on some med's and said let's try

> to put it into remission, it's only been a few weeks on the med's

> but there's been no change in how swollen I am, or how much pain

> I'm in, or the feelings of just wanting to off-myself because I

> don't think I can deal with it another day. I don't have

> insurance, so I don't have a rhuemy yet, I'm trying for medicaid

> and possibly disability. I feel really alone and in the dark about

> the whole thing, and in so much pain I can't really focus on

> anything but the fact I'll be dealing with this for the rest of my

> life. If anyone could tell me about the beginning of their

> treatment, how things are day to day, if the pain ever really

> stops, if things are ever " normal " again for them... Pretty much

> any information would be great.

> Thank you all,

>

[Guest guest]

My name is , warwick is an ode to a very expensive guitar I

purchased but because of the swelling in my hands I can no longer

play =(, that would be my " normal " , being able to play a set of music

again- I'm no longer working, my job was really physical and there

was no way I could continue. When I first went to the Doctor to get

my blood test he put me on prednisone for a week, when my results

came back he put me on Plaquanil,meloxicam and lortab for pain, I

haven't seen the benefits of any of these meds yet unfortunately. I'm

in more pain now and in more places than I was when I first got the

medication. Thank you for your info and your encouragement =) it

means alot.

> >

> > Hello everyone! Let me just dive in-

> > I just turned 27, and have recently been diagnosed with RA. It's

> > been absolutely horrible. I don't know how people are able to

deal

> > with the pain on a daily basis. I guess I'm in the early stages

of

> > treatment, the stage that doesn't work, or takes a while to work

I

> > guess. My doctor basically put me on some med's and said let's

try

> > to put it into remission, it's only been a few weeks on the med's

> > but there's been no change in how swollen I am, or how much pain

> > I'm in, or the feelings of just wanting to off-myself because I

> > don't think I can deal with it another day. I don't have

> > insurance, so I don't have a rhuemy yet, I'm trying for medicaid

> > and possibly disability. I feel really alone and in the dark

about

> > the whole thing, and in so much pain I can't really focus on

> > anything but the fact I'll be dealing with this for the rest of

my

> > life. If anyone could tell me about the beginning of their

> > treatment, how things are day to day, if the pain ever really

> > stops, if things are ever " normal " again for them... Pretty much

> > any information would be great.

> > Thank you all,

> >

>

[Guest guest]

,

My I ask if your doctor put you on prednisone? It is the best short

term medication for inflammation. It is on the Wal-Mart $4 for 30

days and $10 for 90 days program and available in different dosages.

It is so much cheaper that I forgo my insurance and pay it out of

pocket.

There are side effects, but everyone that I know was helped so much

by it, that we accepted the side effects.

Don't give up, remission is a possibilty and many of the RA drugs do

give you relief. Not every drug works for every person though. For

example, I started Enbrel 4 weeks ago. I read that it can work in as

few as three weeks or it could take up to 3 months to work. I

haven't had any resluts yet.

I hope you are feeling better soon.

Shirley

--- In , " war_wick11 " <war_wick11@...>

wrote:

>

> Hello everyone! Let me just dive in-

> I just turned 27, and have recently been diagnosed with RA. It's

been

> absolutely horrible. I don't know how people are able to deal with

> the pain on a daily basis. I guess I'm in the early stages of

> treatment, the stage that doesn't work, or takes a while to work I

> guess. My doctor basically put me on some med's and said let's try

to

> put it into remission, it's only been a few weeks on the med's but

> there's been no change in how swollen I am, or how much pain I'm

in,

> or the feelings of just wanting to off-myself because I don't

think I

> can deal with it another day. I don't have insurance, so I don't

> have a rhuemy yet, I'm trying for medicaid and possibly

disability. I

> feel really alone and in the dark about the whole thing, and in so

> much pain I can't really focus on anything but the fact I'll be

> dealing with this for the rest of my life. If anyone could tell me

> about the beginning of their treatment, how things are day to day,

if

> the pain ever really stops, if things are ever " normal " again for

> them... Pretty much any information would be great.

> Thank you all,

>

[Guest guest]

Hi Marina and welcome! This is a great group! I have similar issues to yours:

RA, PCOS, and hashis hypothyroidism. If you have familyembers with similar

conditions, take a look at www.madgc.org they have several interesting studies

on the genetics of RA and related conditions. For management I take Enbrel,

synthroid, and metformin er. Kate f.

Sent from my iPhone

On Mar 7, 2010, at 5:18 AM, Marti M <mhmilligan1977@...> wrote:

My name is a and i am a 32 year old newly engaged women from British

Columbia Canada, i was DX with rheumatoid arthritis last thrusday. i am

scared and etc. looking for more info on it. i also have Type 2 diabetes,

hypothyroid, PCOS, osteoarthritis and lots more

Thanks for any help advance

a

[Guest guest]

> Hi Kate

>

> Thanks for the welcome, and I don't know have any family members with RA,

> PCOS or the thyroid conditions. i cannot ask my mom as she passed away 8

> years ago. my mom was only 41 when she passed away. for my management i am

> on Synthroid, Lantus insulin, diamon and medroxy and other meds too

>

> Hugs

> a

>

> On Sun, Mar 7, 2010 at 7:02 AM, Kate Fair <kalfoley@...> wrote:

>

>> Hi a and welcome! This is a great group! I have similar issues to

>> yours: RA, PCOS, and hashis hypothyroidism. If you have familyembers with

>> similar conditions, take a look at www.madgc.org they have several

>> interesting studies on the genetics of RA and related conditions. For

>> management I take Enbrel, synthroid, and metformin er. Kate f.

>>

>>

>>

>>

[Guest guest]

  Heidi, I've read that infections are sometimes believed to be a trigger for

RA, though no-one knows for sure,I'd just never seen or been told that an

infection could wake up the RA after it had been 'sedated' through DMARDs. I 've

been on Metyhotrexate for 20 months now.I'd been totally healthy-I mean no flu,

very few colds just... strong for 25 years before developing RA in

2008(diagnosed in 2009) and getting pneumonia (Community acquired pneumonia) in

January. I just wish I'd had some idea that it was a possibility as it would

have saved me 80 euro-I live in Europe- for a sonogram of my achille's tendons

that I did not need and a month of pain not to mention the uncertainty of

wondering what ELSE was wrong with me. Jillian

From: Heidi Kimball <hkimball48@...>

Sent: Tuesday, March 8, 2011 4:02 PM

Subject: Re: [ ] I'm new

 

Jillian,

I was diagnosed in March 2009 with RA. Interestingly enough, I had pneumonia in

December 2008 and had symptoms of RA very quickly after my illness, but didn't

realize it was RA. I wonder if there is a connection?

Heidi in Denver

________________________________

From: Jillian Hunnable <jillian_hunnable@...>

" " < >

Sent: Tue, March 8, 2011 3:53:57 AM

Subject: [ ] I'm new

Hi, I've just joined.I've been diagnosed for nearly 2 years now and was

considered 'in remission' as of November 2010. This winter (January) I got

pneumonia. As a resut of the infection my RA was reignited. I had no idea this

could happen and consequently lost time contacting my rheumatologist. Did

anybody out there-besides rhematologists- know this?Should it be more common

knowledge? thanx, Jillian

[Guest guest]

Jillian,

You've been taking the Methotrexate for about the same length of time as myself.

Do you feel that it has helped to the point that you can perform " normal " daily

functions as before your diagnosis? I know my new norm is not exerting myself

too much everyday. I do believe it has helped reduce my pain & swelling by

about 50%. I'd like to be completely pain free and not swollen, but I'll take

what I can get at this point.

Heidi in Denver

________________________________

From: Jillian Hunnable <jillian_hunnable@...>

" " < >

Sent: Tue, March 8, 2011 10:57:59 AM

Subject: Re: [ ] I'm new

Heidi, I've read that infections are sometimes believed to be a trigger for

RA, though no-one knows for sure,I'd just never seen or been told that an

infection could wake up the RA after it had been 'sedated' through DMARDs. I 've

been on Metyhotrexate for 20 months now.I'd been totally healthy-I mean no flu,

very few colds just... strong for 25 years before developing RA in

2008(diagnosed in 2009) and getting pneumonia (Community acquired pneumonia) in

January. I just wish I'd had some idea that it was a possibility as it would

have saved me 80 euro-I live in Europe- for a sonogram of my achille's tendons

that I did not need and a month of pain not to mention the uncertainty of

wondering what ELSE was wrong with me. Jillian