New to Group

[Guest guest]

Hi :

I have

to experience regarding the twitch you describe as a spasm.  Just make sure you

ask the doctor and if you are not completely satisfied with the answer, don’t

hesitate in going for a second opinion, maybe with a neurologist.

Trust

your instincts all the time; remember moms are blessed with them and you should

ALWAYS follow them.

Good

luck and let us know how it went.

From:

Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of ladpurdu

Sent: Tuesday, October 30, 2007

2:54 PM

Plagiocephaly

Subject: Re: New to Group

Thanks. I just stumbled upon this group while

searching for more

info about Plago. I'm so nervous about his appt. on Thursday and

that he may need a helmet. Any info/suggestions would be great!

This question isn't really Plago related but I know many of your kids

have/had tort. Did anyone's child twitch the head back and forth?

Almost like a spasium? My son just started doing this and that has

me nervous also.

>

> Welcome to the group. I have an almost 6 year old. She wore a

STARband from age 9 to 12 months. I also repoed my now almost 11

month old.

>

> Angie

> New to Group

>

>

> Hello. My name is . My son is 6 months old (on Thursday) and

was

> diagnosed with Plago several months ago. We are going to Midwest

> Orthodics on Thursday to have his head measured and evaluated. He

has

> torticollis from birth position and the use of a vacumm.

>

> It's great to meet you all.

>

>

>

[Guest guest]

Hi ,

My son is now 16 months and wore the DOC band from 7.5-9.5 months.

I have asked non-plagio/tort questions and the moms here are great.

Unfortunately, I'm not able to answer your question about your

little twitching his head back and forth. Does your pediatrician

have any insight on that?

I'm not sure how Midwest Orthotics works; however, I can tell you

how Cranial Technologies worked at the time of my son's banding. We

went for an evaluation at 3 months and again at 6.5 months. Both

times my son measured, 8mm off but at 3 months we decided to ask his

ped. at his 4 month well check. Without a prescription, CT couldn't

band or give us stretching exercises but they could tell us if he'd

benefit from a band (which he did). After going at 6.5 months, we

decided to band so CT faxed over the measurements and I called our

ped. that same day to tell them CT faxed over info on my son and

that I would really like to band him. If you already have the

script from the doctor then you are one step ahead! Our ped. sent

the script that day so we were able to move forward with the casting

then band. We casted within the next week or so then got the band 2

weeks later. My son hated the casting but it doesn't hurt them and

it is very quick (like 5-10 minutes). He was curious about the band

at first but he was the same happy baby the entire time banded. The

first 2 nights were a little rough as it takes a little bit for

their bodies to adjust to being a little hotter. I think it is

definitely more of an adjustment on the parents and usually it goes

well if you follow protocol. If Midwest does casting, I would

highly recommend bringing another person with you, a favorite toy,

or bottle/pacifier if your son takes those. Hopefully, this helps a

little bit.

16 month old son (DOC graduate at 9.5 months).

PS: If you will band either way, then given that your son is

already 6 months, I would band then deal with insurance later. That

is what we did and got reimbursed 80% from UHC.

> >

> > Welcome to the group. I have an almost 6 year old. She wore a

> STARband from age 9 to 12 months. I also repoed my now almost 11

> month old.

> >

> > Angie

> > New to Group

> >

> >

> > Hello. My name is . My son is 6 months old (on Thursday)

and

> was

> > diagnosed with Plago several months ago. We are going to

Midwest

> > Orthodics on Thursday to have his head measured and evaluated.

He

> has

> > torticollis from birth position and the use of a vacumm.

> >

> > It's great to meet you all.

> >

> >

> >

>

[Guest guest]

Thanks so much for all the info so far! My PT suggested getting his

head measured. My PT said that Midwest Orthotics has a " sock " that

they put on the child's head to make a digital image on the computer

to begin tracking his progress. I think that once we have the

evaluation from the orthotist then we go from there.

As far as asking my pediatricianabout his twitching, I haven't yet.

He just started this a couple of days ago and my PT has been the

first step in helping him so far with any problems. My son also has

acid reflux and after going to the doctor/calling every 2 weeks for

the first 4 months of his life I'm less likely to call them about

issues with his tort. He has therapy tomorrow and I'll see what his

PT says first.

> > >

> > > Welcome to the group. I have an almost 6 year old. She wore a

> > STARband from age 9 to 12 months. I also repoed my now almost 11

> > month old.

> > >

> > > Angie

> > > New to Group

> > >

> > >

> > > Hello. My name is . My son is 6 months old (on Thursday)

> and

> > was

> > > diagnosed with Plago several months ago. We are going to

> Midwest

> > > Orthodics on Thursday to have his head measured and

evaluated.

> He

> > has

> > > torticollis from birth position and the use of a vacumm.

> > >

> > > It's great to meet you all.

> > >

> > >

> > >

> >

>

[Guest guest]

Welcome !

Jen and Luli - 22 months

Left tort - Right Plagio - Hanger Band Grad - CA

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

New to Group

Hello. My name is . My son is 6 months old (on Thursday) and was

diagnosed with Plago several months ago. We are going to Midwest

Orthodics on Thursday to have his head measured and evaluated. He has

torticollis from birth position and the use of a vacumm.

It's great to meet you all.

Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

Hi :

My twin

sons had the digital images taken at CranialTech in Miami to have the DocBand done and it was

great! (much better that the cast).

You are

correct, they place a stocking over their head and cut a hole open in the front

of the face so their eyes, nose and mouth are not covered, then they take them in

their diapers to the 3D digital image studio and they sit them in the center held

by one of the therapists all I did was hold a little monkey up so they would look

up and a great image of them was taken. My 6-month old sons did not cry and

actually enjoyed the photo session.

Then after

a few minutes the computer generated 3D images of their heads and that was it.

I almost

forgot to mention that one of my twins also has acid reflux and has been taking

Prevacid and Carafate since he was two weeks old so I know exactly what you

mean. The good thing is that after peaking at the fourth or fifth month the

acid reflux starts getting better.

But don’t

hesitate in asking to see a specialist both for the acid reflux and the tort.

Good luck

and let us know how it goes.

From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of ladpurdu

Sent: Tuesday, October 30, 2007

5:01 PM

Plagiocephaly

Subject: Re: New to Group

Thanks so much for all the info so far! My PT

suggested getting his

head measured. My PT said that Midwest Orthotics has a " sock " that

they put on the child's head to make a digital image on the computer

to begin tracking his progress. I think that once we have the

evaluation from the orthotist then we go from there.

As far as asking my pediatricianabout his twitching, I haven't yet.

He just started this a couple of days ago and my PT has been the

first step in helping him so far with any problems. My son also has

acid reflux and after going to the doctor/calling every 2 weeks for

the first 4 months of his life I'm less likely to call them about

issues with his tort. He has therapy tomorrow and I'll see what his

PT says first.

> > >

> > > Welcome to the group. I have an almost 6 year old. She wore a

> > STARband from age 9 to 12 months. I also repoed my now almost 11

> > month old.

> > >

> > > Angie

> > > New to Group

> > >

> > >

> > > Hello. My name is . My son is 6 months old (on Thursday)

> and

> > was

> > > diagnosed with Plago several months ago. We are going to

> Midwest

> > > Orthodics on Thursday to have his head measured and

evaluated.

> He

> > has

> > > torticollis from birth position and the use of a vacumm.

> > >

> > > It's great to meet you all.

> > >

> > >

> > >

> >

>

[Guest guest]

I have never heard of Carafate before. He is taking Zantac (which

helped tremendously until he was 4 months old and they told me they

couldn't up his dosage because he was at the highest level even

though he kept gaining weight). We tried Prevacid when he was 3

months old and it was horrible. I even had to wait until he was 5

months old before he could eat baby food because he had a horrible

reaction when I first gave him rice cereal. Now he can eat anything

(so far) and hasn't had a problem. Hopefully when I try to change

his formula in a few weeks he won't have any problem with that (I

tried that earlier on and it was bad also).

He used to sleep through the night but when they quit raising his

Zantac he quit sleeping through the night. Now his PT is trying a

sleep sensory diet to help get him to sleep through the night since

it's effecting his therapy. After almost 2 months of dealing with a

fussy baby I was able to convince the doctor that he needed a higher

dose and was able to give him a higher dose. Unfortunately he still

doesn't sleep through the night. I think it's because it's been so

long since he has slept through the night that now he's dependant on

his bottle at night. If I try to let him cry it out he won't (hence

the sleep sensory diet). He'd cry for 2 hours if I let him. I can't

take much more than an hour.

> > > >

> > > > Welcome to the group. I have an almost 6 year old. She wore a

> > > STARband from age 9 to 12 months. I also repoed my now almost

11

> > > month old.

> > > >

> > > > Angie

> > > > New to Group

> > > >

> > > >

> > > > Hello. My name is . My son is 6 months old (on Thursday)

> > and

> > > was

> > > > diagnosed with Plago several months ago. We are going to

> > Midwest

> > > > Orthodics on Thursday to have his head measured and

> evaluated.

> > He

> > > has

> > > > torticollis from birth position and the use of a vacumm.

> > > >

> > > > It's great to meet you all.

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Hi

I'm Dawn my son has right tort and he would sometimes turn his head

violently both directions, it seems to be imporving with the tort.

My p/t said something about the discomfort making him shake his head

that way. Evan did not do it very often so it never really concerned

me but I would ask the ped. or p/t if it concerns you. It seem to be

more when I was feeding him and making him turn for the bottle.

Good Luck

Dawn

Mom of Evan 3mo and Alix 14

[Guest guest]

Welcome Tamarin and congratulations on the adoption of your baby girl!!!!

We used a Hanger - my dd wore 2 of them from 6.5 mo. to 12.5 mo. old.

Hanger is an active band. What you need to find out is the experience of the ortho who will be treating. How many years, how many kids, etc. It's the experience that matters most. a good band in bad hands is not a good thing.

Also, at 9 1/2 mo. I get what you are saying about wanting to get started - but you are right about the bonding - It's a tough call. How severe is the plagio?

Jen and Luli - 23 months

Left tort - Right Plagio - Hanger Band Grad - CA

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

New to group

Hi,

My husband and I just adopted a little girl five weeks ago. We took her to her pediatrician for a checkup and she referred us to Children's Hospital in Seattle for an evaluation. Children's Hospital diagnosed my daughter with left side plagiocephaly and right side torticollis. They recommended helmet treatment and also referred us to a pediatric physical therapist.

My daughter is in the adjustment/bonding period of our relationship and I am not sure this would be the right time to subject her to treatment, she has had to adapt to so many changes in the last five weeks. However she is already 9 1/2 months old and I know I should not delay the treatment much longer.

Children's hospital only uses the Clarren helmet for their treatments. I am not very knowledgeable about helmets/bands, but I do understand there are two different types, "passive and active". I am not sure a passive helmet would be the right decision for my daughter given her age. I was also told she would probably have to wear the Clarren helmet for 7 to 8 months, which seems like a long time to me.

I have been doing some research and have discovered there is another manufacturer that does helmet/band treatment in Seattle. That company is Hanger Orthotics and I would go directly through them for her treatment. I am looking for feedback from anyone who has received treatment or who is currently receiving treatment using either the Clarren helmet or a Hanger band. What age was your child when they started treatment? How long did they receive treatment? Pros and cons of the helmet/band? Difference between passive and active treatment? Were you satisfied with the results?

We have two appointments scheduled for next week, one for a laser scan at Children's and one for a consultation/laser scan at Hanger. I need to make a decision soon so I can cancel one of the appointments. Any feedback you can give me would be appreciated!

Sincerely,

Tamarin

Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

> Take hours to do a bowel movement(sometimes up to 7 hours) and then

> it would be soft. He had rectal prolapse at a year of age and was

> on myralax

This can cause problems

http://www.danasview.net/miralax.htm

Here are other constipation ideas

http://www.danasview.net/constip.htm

>>He has chronic

> sinusitus which hospitalizes him because he gets so dehydrated and

> so they always put him on antibiotics when he starts to throw up

> after having cold symptoms for longer than 2 weeks.

Not sure I follow this.

At my house, sinus issues were caused by yeast in the sinuses. They

can also be caused by bad bacteria.

http://www.danasview.net/yeast.htm

My son also had latent viruses, which occasionally did cause cold

symptoms for a long time. I eliminated my son's virus problems with a

LOT of vitamin C, lysine, OLE, and Virastop.

>>His immune system is way below normal

> although not at zero and so they will not do anything(from the

> immunologist).

Try the vitamin C and lysine.

>>When he has stools this brown color, he has better days with

> not stimming and his focus is way better. He had a really hard day

> today and cried several times today for which I could not find a

> reason.

Since he tends to do better on antibiotics, try naturals like olive

leaf extract or oil of oregano.

Dana

[Guest guest]

Hi Jenn and welcome. Where in Michigan are you? I grew up smack dab in the

middle, and I went to college in Ann Arbor. Anyway, I hope your meds get

settled soon. Enbrel has been magical for me, and I hope it works great for you

too. I have always loved water exercise. It can be a test of willpower to get

to the pool when it's cold and blustery out, but it can really, really, help,

especially if there's a warm water therapy pool there. One word of warning -

don't try to go to the therapy pool and then get in the regular pool. Eek! I

learned that the hard way, it just feels way too cold! Best, Kate F

[ ] New to group

Hello everyone, I'm new to the group and wanted to introduce myself.

My name is Jenn, and I was dx'd with severe RA in Aug. 2006. My meds

include: prednisone (for weight gain, har har), enbrel, methotrexate,

folic acid, and fosamax (for osteopenia). I am still struggling to

find the right balance on my meds, as well as finding the right meds.

I live in Michigan, and now that the cold air has arrived, I'm really

dreading another Winter with RA. Last year, I took a lot of hot baths,

and did my dishes in the morning. If anyone has any other ideas on

keeping the joints moving in the cold, please let me know.

I wish you all a pain free day!

Jenn

________________________________________________________________________________\

____

Get easy, one-click access to your favorites.

Make your homepage.

http://www./r/hs

[Guest guest]

Hi jenn

Welcome to the group.I have to wait until at least midday to attempt to do

anything my pain is most severe in the AM. I do some streching exercises

everyday and that does seem to help some. But when the cold damp hits, I

live in NJ, nothing like the cold y'all get in MI but on those days I just

try to stay warm and relax. sometimes it means staying in bed. I take

Methotrexate and Embrel for the RA. I had to stop taking themfor awhile and

mannn could I tell the difference. I go back on both of them this wekk

YEAH!!!. It took 2-3 months for the Embrel to help me. Hope you feel better

and have a painfree Thanksgiving.

Heidi M

On 11/19/07, Fair <kalfoley@...> wrote:

>

> Hi Jenn and welcome. Where in Michigan are you? I grew up smack dab in

> the middle, and I went to college in Ann Arbor. Anyway, I hope your meds get

> settled soon. Enbrel has been magical for me, and I hope it works great for

> you too. I have always loved water exercise. It can be a test of willpower

> to get to the pool when it's cold and blustery out, but it can really,

> really, help, especially if there's a warm water therapy pool there. One

> word of warning - don't try to go to the therapy pool and then get in the

> regular pool. Eek! I learned that the hard way, it just feels way too cold!

> Best, Kate F

>

> [ ] New to group

>

> Hello everyone, I'm new to the group and wanted to introduce myself.

> My name is Jenn, and I was dx'd with severe RA in Aug. 2006. My meds

> include: prednisone (for weight gain, har har), enbrel, methotrexate,

> folic acid, and fosamax (for osteopenia). I am still struggling to

> find the right balance on my meds, as well as finding the right meds.

> I live in Michigan, and now that the cold air has arrived, I'm really

> dreading another Winter with RA. Last year, I took a lot of hot baths,

> and did my dishes in the morning. If anyone has any other ideas on

> keeping the joints moving in the cold, please let me know.

> I wish you all a pain free day!

> Jenn

>

> __________________________________________________________

> Get easy, one-click access to your favorites.

> Make your homepage.

> http://www./r/hs

>

>

[Guest guest]

Hi Jenn!

Welcome to the group! I am in Michigan too right on

the lake and its really cold this time of year! I miss

long hot soaks in the bubble bath! I'm stuck with the

showers now though. I do some stretching and physical

therapy exercises to keep the joints moving and when I

am able to stand I do some light walking on my

treadmiil. Even if its only for a couple of minutes.

I'm in the same situation with medications right now.

I was taking one that was somewhat helping and had to

quit due to a bout of illness. My doctor advised that

it could take up to 6 months to begin working. I

reached the 6 month point but it wasn't helping enough

and just as we increased it, I went and got sick! I've

been off it for the past couple of months and I am

really feeling the flare!!!!

--- Heidi Mendelsohn <hmendelsohn@...> wrote:

> Hi jenn

> Welcome to the group.I have to wait until at least

> midday to attempt to do

> anything my pain is most severe in the AM. I do some

> streching exercises

> everyday and that does seem to help some. But when

> the cold damp hits, I

> live in NJ, nothing like the cold y'all get in MI

> but on those days I just

> try to stay warm and relax. sometimes it means

> staying in bed. I take

> Methotrexate and Embrel for the RA. I had to stop

> taking themfor awhile and

> mannn could I tell the difference. I go back on both

> of them this wekk

> YEAH!!!. It took 2-3 months for the Embrel to help

> me. Hope you feel better

> and have a painfree Thanksgiving.

> Heidi M

>

>

> On 11/19/07, Fair <kalfoley@...>

> wrote:

> >

> > Hi Jenn and welcome. Where in Michigan are you?

> I grew up smack dab in

> > the middle, and I went to college in Ann Arbor.

> Anyway, I hope your meds get

> > settled soon. Enbrel has been magical for me, and

> I hope it works great for

> > you too. I have always loved water exercise. It

> can be a test of willpower

> > to get to the pool when it's cold and blustery

> out, but it can really,

> > really, help, especially if there's a warm water

> therapy pool there. One

> > word of warning - don't try to go to the therapy

> pool and then get in the

> > regular pool. Eek! I learned that the hard way, it

> just feels way too cold!

> > Best, Kate F

> >

> > [ ] New to group

> >

> > Hello everyone, I'm new to the group and wanted to

> introduce myself.

> > My name is Jenn, and I was dx'd with severe RA in

> Aug. 2006. My meds

> > include: prednisone (for weight gain, har har),

> enbrel, methotrexate,

> > folic acid, and fosamax (for osteopenia). I am

> still struggling to

> > find the right balance on my meds, as well as

> finding the right meds.

> > I live in Michigan, and now that the cold air has

> arrived, I'm really

> > dreading another Winter with RA. Last year, I took

> a lot of hot baths,

> > and did my dishes in the morning. If anyone has

> any other ideas on

> > keeping the joints moving in the cold, please let

> me know.

> > I wish you all a pain free day!

> > Jenn

> >

> >

>

__________________________________________________________

> > Get easy, one-click access to your favorites.

> > Make your homepage.

> > http://www./r/hs

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

> >

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Be a better sports nut! Let your teams follow you

with Mobile. Try it now.

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[Guest guest]

Hi Heidi,

I've been through the stopping/restarting of meds due to illness too. I

absolutely hate it. I'm thinking of hanging a sign on the outside of my door

that reads: " An old lady lives here. If you are sick, or have been around

someone who is, please visit another time. " When I was only on the methotrexate

(pill form), I found that I caught colds very frequently. My rheumy switched me

to the injections of mtx (increase in dosage) and I felt that I wasn't as sick

as often. However, I've been on Enbrel since December 2006, and I've had 2

surgeries and countless illnesses. But it seems to help, so I continue taking

it. My only advice is this:

get your rest, eat a balanced diet, drink lots of water, and wash your hands

constantly. Also, I swear by Dial antibacterial shower gel. It's a bit pricey,

but well worth it to me. I have a tough time getting in and out of the tub

these days, so for now, I can only shower. (I imagine most of us are in the

same boat this time of year). I live in Grand Rapids, MI. Where are you? Keep

me posted as to how you're doing, and let me know if there's anything I can do

to help. My thanks to everyone who gave me such a warm welcome to the board. I

really appreciate it.

Jenn

stephanie <stephieann2@...> wrote:

Hi Jenn!

Welcome to the group! I am in Michigan too right on

the lake and its really cold this time of year! I miss

long hot soaks in the bubble bath! I'm stuck with the

showers now though. I do some stretching and physical

therapy exercises to keep the joints moving and when I

am able to stand I do some light walking on my

treadmiil. Even if its only for a couple of minutes.

I'm in the same situation with medications right now.

I was taking one that was somewhat helping and had to

quit due to a bout of illness. My doctor advised that

it could take up to 6 months to begin working. I

reached the 6 month point but it wasn't helping enough

and just as we increased it, I went and got sick! I've

been off it for the past couple of months and I am

really feeling the flare!!!!

--- Heidi Mendelsohn <hmendelsohn@...> wrote:

> Hi jenn

> Welcome to the group.I have to wait until at least

> midday to attempt to do

> anything my pain is most severe in the AM. I do some

> streching exercises

> everyday and that does seem to help some. But when

> the cold damp hits, I

> live in NJ, nothing like the cold y'all get in MI

> but on those days I just

> try to stay warm and relax. sometimes it means

> staying in bed. I take

> Methotrexate and Embrel for the RA. I had to stop

> taking themfor awhile and

> mannn could I tell the difference. I go back on both

> of them this wekk

> YEAH!!!. It took 2-3 months for the Embrel to help

> me. Hope you feel better

> and have a painfree Thanksgiving.

> Heidi M

>

>

> On 11/19/07, Fair <kalfoley@...>

> wrote:

> >

> > Hi Jenn and welcome. Where in Michigan are you?

> I grew up smack dab in

> > the middle, and I went to college in Ann Arbor.

> Anyway, I hope your meds get

> > settled soon. Enbrel has been magical for me, and

> I hope it works great for

> > you too. I have always loved water exercise. It

> can be a test of willpower

> > to get to the pool when it's cold and blustery

> out, but it can really,

> > really, help, especially if there's a warm water

> therapy pool there. One

> > word of warning - don't try to go to the therapy

> pool and then get in the

> > regular pool. Eek! I learned that the hard way, it

> just feels way too cold!

> > Best, Kate F

> >

> > [ ] New to group

> >

> > Hello everyone, I'm new to the group and wanted to

> introduce myself.

> > My name is Jenn, and I was dx'd with severe RA in

> Aug. 2006. My meds

> > include: prednisone (for weight gain, har har),

> enbrel, methotrexate,

> > folic acid, and fosamax (for osteopenia). I am

> still struggling to

> > find the right balance on my meds, as well as

> finding the right meds.

> > I live in Michigan, and now that the cold air has

> arrived, I'm really

> > dreading another Winter with RA. Last year, I took

> a lot of hot baths,

> > and did my dishes in the morning. If anyone has

> any other ideas on

> > keeping the joints moving in the cold, please let

> me know.

> > I wish you all a pain free day!

> > Jenn

> >

> >

>

__________________________________________________________

> > Get easy, one-click access to your favorites.

> > Make your homepage.

> > http://www./r/hs

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

> >

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Be a better sports nut! Let your teams follow you

with Mobile. Try it now.

http://mobile./sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ

[Guest guest]

Welcome Stacey, I just joined this group yesturday! It is great to

find people to relate to. I have two seven yr old boys. Very

depressing when they want you and you have to say " mommy is not feeling

well right now " . I can sympathise. I am here to chat!

laura

[Guest guest]

Hi Jenn!

Thank you so much for the tips and for sharing that

you too have had issues stopping/restarting meds due

to illness. That helped me immensely. This is my

first major illness since U of Michigan started my

treatments and getting as sick as I did/and still am,

I was sure I wasn't going to make it through! THAT is

a great idea for a sign to hang on the door! I'm a

new first time aunt and I love to see the baby. He

had a slight cold awhile back and I held him, and

forgot about putting a face mask on..I'm not sure if

that's what kicked off my cold but it snowballed! I

will check out that antibacterial shower gel! I'm not

too far from Grand Rapids I live in between South

Haven and St. Joe!

--- Hill <jenner632003@...> wrote:

> Hi Heidi,

> I've been through the stopping/restarting of meds

> due to illness too. I absolutely hate it. I'm

> thinking of hanging a sign on the outside of my door

> that reads: " An old lady lives here. If you are

> sick, or have been around someone who is, please

> visit another time. " When I was only on the

> methotrexate (pill form), I found that I caught

> colds very frequently. My rheumy switched me to the

> injections of mtx (increase in dosage) and I felt

> that I wasn't as sick as often. However, I've been

> on Enbrel since December 2006, and I've had 2

> surgeries and countless illnesses. But it seems to

> help, so I continue taking it. My only advice is

> this:

> get your rest, eat a balanced diet, drink lots of

> water, and wash your hands constantly. Also, I

> swear by Dial antibacterial shower gel. It's a bit

> pricey, but well worth it to me. I have a tough

> time getting in and out of the tub these days, so

> for now, I can only shower. (I imagine most of us

> are in the same boat this time of year). I live in

> Grand Rapids, MI. Where are you? Keep me posted as

> to how you're doing, and let me know if there's

> anything I can do to help. My thanks to everyone

> who gave me such a warm welcome to the board. I

> really appreciate it.

> Jenn

> stephanie <stephieann2@...> wrote:

> Hi Jenn!

> Welcome to the group! I am in Michigan too right on

> the lake and its really cold this time of year! I

> miss

> long hot soaks in the bubble bath! I'm stuck with

> the

> showers now though. I do some stretching and

> physical

> therapy exercises to keep the joints moving and when

> I

> am able to stand I do some light walking on my

> treadmiil. Even if its only for a couple of minutes.

>

> I'm in the same situation with medications right

> now.

> I was taking one that was somewhat helping and had

> to

> quit due to a bout of illness. My doctor advised

> that

> it could take up to 6 months to begin working. I

> reached the 6 month point but it wasn't helping

> enough

> and just as we increased it, I went and got sick!

> I've

> been off it for the past couple of months and I am

> really feeling the flare!!!!

> --- Heidi Mendelsohn <hmendelsohn@...> wrote:

>

> > Hi jenn

> > Welcome to the group.I have to wait until at least

> > midday to attempt to do

> > anything my pain is most severe in the AM. I do

> some

> > streching exercises

> > everyday and that does seem to help some. But when

> > the cold damp hits, I

> > live in NJ, nothing like the cold y'all get in MI

> > but on those days I just

> > try to stay warm and relax. sometimes it means

> > staying in bed. I take

> > Methotrexate and Embrel for the RA. I had to stop

> > taking themfor awhile and

> > mannn could I tell the difference. I go back on

> both

> > of them this wekk

> > YEAH!!!. It took 2-3 months for the Embrel to help

> > me. Hope you feel better

> > and have a painfree Thanksgiving.

> > Heidi M

> >

> >

> > On 11/19/07, Fair <kalfoley@...>

> > wrote:

> > >

> > > Hi Jenn and welcome. Where in Michigan are you?

> > I grew up smack dab in

> > > the middle, and I went to college in Ann Arbor.

> > Anyway, I hope your meds get

> > > settled soon. Enbrel has been magical for me,

> and

> > I hope it works great for

> > > you too. I have always loved water exercise. It

> > can be a test of willpower

> > > to get to the pool when it's cold and blustery

> > out, but it can really,

> > > really, help, especially if there's a warm water

> > therapy pool there. One

> > > word of warning - don't try to go to the therapy

> > pool and then get in the

> > > regular pool. Eek! I learned that the hard way,

> it

> > just feels way too cold!

> > > Best, Kate F

> > >

> > > [ ] New to group

> > >

> > > Hello everyone, I'm new to the group and wanted

> to

> > introduce myself.

> > > My name is Jenn, and I was dx'd with severe RA

> in

> > Aug. 2006. My meds

> > > include: prednisone (for weight gain, har har),

> > enbrel, methotrexate,

> > > folic acid, and fosamax (for osteopenia). I am

> > still struggling to

> > > find the right balance on my meds, as well as

> > finding the right meds.

> > > I live in Michigan, and now that the cold air

> has

> > arrived, I'm really

> > > dreading another Winter with RA. Last year, I

> took

> > a lot of hot baths,

> > > and did my dishes in the morning. If anyone has

> > any other ideas on

> > > keeping the joints moving in the cold, please

> let

> > me know.

> > > I wish you all a pain free day!

> > > Jenn

> > >

> > >

> >

>

__________________________________________________________

> > > Get easy, one-click access to your favorites.

> > > Make your homepage.

> > > http://www./r/hs

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> > >

> > >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

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>

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[Guest guest]

I also belong to the webmd board, and someone posted this today. It's a great

example of how chronic pain can be explained to those around us. the link is:

www.butyoudontlooksick.com/the_spoon_theory

[Guest guest]

She is lucky to have a Mom that does research for her.

Does she take folic acid supplement with MTX?

If she is having a reaction she needs to call doc. I didn't do so well on

pills

with stomach side effects but so far I am doing better on injections.

I can't take codiene so I just take tylenol arthritis for pain.

Good luck to her!

Joy

willowspirit26 <willowspirit26@...> wrote:

Hi All-

My daughter was diagnosed with RA about 4 months ago. She is scared

to death of the meds she has to take and scared to do research, so I

am her " official " researcher and info gatherer!

She is 40. She has to work full-time and is an IT tech so must type a

lot. The RA specialist started her out on Plaquenil and was very

excited that it had worked at her 1 month appt., so he scheduled her

for an appt. 3 months later. At that point he said even tho' she had

no joint damage yet, the inflammation was not going away so he added

Methatraxate, 4, 2.5mg tabs once a week. He is still having her take

the Plaquenil. She said the pain is somewhat less but she has had

some nasty side effects from the Methatraxate. Feels sick for 1-3

days, skin is very itchy (to the point where she could only wear

certain clothing), is losing her hair, etc. She is also taking

Tylenol 3's and Percoset for pain. She takes her Methatraxate on

Sundays and today she has red, itchy spots all over her face and a

painful red itchy streak by one eye. She says she doesn't feel as

sick this week, so far. Is this all pretty normal for this med?

[Guest guest]

Thanks! It's pretty scary for me too. You just don't think stuff

like this will happen to your kids, you think it may happen to you!!

She is taking a folic acid supplement. She called her doctor about

the reactions and he wanted her to keep taking what she is on until

her next appointment which is another week or two. She went to an

opthamologist today and he said she had what he would call in

layman's terms " a cold in her eye " . He said it wasn't caused by any

of the meds she was taking. Gave her some drops for her eye. Told

her she was taking one nasty cocktail!! How reassuring... Said she

needs to have her eyes checked every month to make sure the meds

aren't messing with them. She said he seemed familiar with RA. So

upward and onward! Thanks again for the reply. I'm off to read

more of the postings and glean info...

Vicki

> Hi All-

> My daughter was diagnosed with RA about 4 months ago. She is

scared to death of the meds she has to take and scared to do

research, so I am her " official " researcher and info gatherer!

[Guest guest]

Hi Vicki!

You have come to a great group to get information

from, to ask questions to, or just receive general

support! I hope her side effects from the medication

go away soon! I am 35 and have had symptoms for 2

years but because I have Fibromyalgia since I was 30

too, and whenever I saw the Rheumatologist my joints

weren't always red or warm when examined. My Xrays

showed the joint effusions. Then they had to aspirate

it a few times over 2 years, and determined that with

the elevated westgren, ESR sed rate, and CRP to go

ahead and begin treatment. I take Plaquenil and

3000mgs of Sulfasalazine. I felt very malaised on the

Sulfasalazine and everyday complained that I had to

take it (usually just complained to myself or my

mom:)) I had to stop it the past couple of months due

to bronchitis that lasted for about 2 months. I

finished 2 rounds of antibiotics. The second round

hopefully got it. I had to go back this past Tuesday

and now its an upper respiratory infection and

sinusitis, so another antibiotic! This one serves a

dual purpose. It helps the infection and at the same

time it prevents pneumonia or bronchitis so I'm hoping

to be well soon so its safe for my drs to put me back

on the medication. I was supposed to start

Methotrexate in December as I go on the 3rd. Yet with

this setback of having been ill and not being able to

take the meds, she might want to stretch that plan out

again and see how the increased sulfasalazine went.

Although my med makes me rather ill, I learned one

important lesson throughout this ordeal the past

couple of months. I would probably rather feel

malaise and flu like due to the meds everyday than the

pain that spread through my body without the meds.

Moving is almost an impossibility, ankles, feet, its

hard to just stand.

If you haven't gotten information from them yet, the

arthritis foundation sends out free information

packages and phamplets on any arthritic disease you

request. They have an amazing magazine they send a

few times a year called Arthritis Today. I've always

learned a lot there about recent study findings, new

therapies, new drugs, tips on how to live better, tips

to help us do things easier. I'm glad you found this

group:)

--- willowspirit26 <willowspirit26@...> wrote:

> Thanks! It's pretty scary for me too. You just

> don't think stuff

> like this will happen to your kids, you think it may

> happen to you!!

>

> She is taking a folic acid supplement. She called

> her doctor about

> the reactions and he wanted her to keep taking what

> she is on until

> her next appointment which is another week or two.

> She went to an

> opthamologist today and he said she had what he

> would call in

> layman's terms " a cold in her eye " . He said it

> wasn't caused by any

> of the meds she was taking. Gave her some drops for

> her eye. Told

> her she was taking one nasty cocktail!! How

> reassuring... Said she

> needs to have her eyes checked every month to make

> sure the meds

> aren't messing with them. She said he seemed

> familiar with RA. So

> upward and onward! Thanks again for the reply.

> I'm off to read

> more of the postings and glean info...

>

> Vicki

>

>

>

> > Hi All-

> > My daughter was diagnosed with RA about 4 months

> ago. She is

> scared to death of the meds she has to take and

> scared to do

> research, so I am her " official " researcher and info

> gatherer!

>

>

>

________________________________________________________________________________\

____

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Text or chat with friends inside . See how.

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[Guest guest]

Deb, I'm a mom to 19 yo boys that weren't diagnosed until they were 15. You have plenty to contribute, you live it 24/7 just like the rest of us and you can offer help and encouragement to those with younger kids( and older) and throw out ideas that helped you, it may not benefit everyone because all our aspies are different, but it will help someone.. You are as much an authority as the rest of us, don't cut yourself short and don't be so quiet! ( unless you 'want' to..;-) ) Toni

( ) New to group

Just wanted to say hi and a little intro so you know who another quiet one is on the list. I might pop in on occassion but I'm not much of an authority on aspergers...

My son was "diagnosed" unofficially at 15 by his school. It took until last year when he hit 17 to get the psych docs to put it in writing. He was misunderstood as a child with a bad attitude, instead of one with needs. At least we know now what's making him tick.

Anyway, hi. I'm not sure I'll have much to contribute, although over the years we've tried a lot with some limited successes.

Deb

[Guest guest]

Thanks for the reassurances

I'm still adjusting to the idea that my son has a " handicap " or disability or perhaps an inability to communicate like everyone else. For years we were told by his teachers, counselors, principals (quite a few schools now) that he was making poor choices, and that he needed Ritalin and that he was an ADHD child. We finally found a new psych person at one of his schools that clued into what was really going on. I still think she was a godsend. At least now I know why he struggles so much, hates going to school, can't make friends (he has finally got a couple, all from other schools than his own). He's highly intelligent so he hid the reality for a very long time.

You make a very good point too, from everything I read, they ARE all different, to varying degrees. Try to explain that to a school that doesn't get it, won't put him into the asperger's program because he's too smart, won't give him an assistant ... not sure why. He even has a security guard that knows him as well as any of his teachers, he leaves class a lot because of frustration.

I liked the idea someone mentioned about a guide dog. My son " appears " normal, seems to be normal, until he tries to learn or function under " society " rules, or the expectations of normal kids. He does have a refuge at school, I've insisted they provide several, including a lunch time place to hide. I also liked the idea someone mentioned that he's allowed to leave class a few minutes early to get his lunch... he usually skips eating because the lines are overwhelming.

So, I've already found a great deal of ideas here in the short time I've been on this list. I'm hit and miss in talking though, I guess I do it in spurts. It's nice to know that someone understands.

Deb

On 11/27/07, Toni <kbtoni@...> wrote:

Deb, I'm a mom to 19 yo boys that weren't diagnosed until they were 15. You have plenty to contribute, you live it 24/7 just like the rest of us and you can offer help and encouragement to those with younger kids( and older) and throw out ideas that helped you, it may not benefit everyone because all our aspies are different, but it will help someone.. You are as much an authority as the rest of us, don't cut yourself short and don't be so quiet! ( unless you 'want' to..;-) ) Toni

( ) New to group

Just wanted to say hi and a little intro so you know who another quiet one is on the list. I might pop in on occassion but I'm not much of an authority on aspergers...

My son was " diagnosed " unofficially at 15 by his school. It took until last year when he hit 17 to get the psych docs to put it in writing. He was misunderstood as a child with a bad attitude, instead of one with needs. At least we know now what's making him tick.

Anyway, hi. I'm not sure I'll have much to contribute, although over the years we've tried a lot with some limited successes.

Deb

[Guest guest]

Don't get me started on explaining anything to do with aspergers to the school...I SOOO understand that. My kids were just lazy, didn't have enough respect to look the teachers in the eyes, and just didn't care according to the school..and this was a private school that we paid a LOT of money to over the years...OUR mistake. Our kids can be extremely intelligent, that doesn't mean that they don't need help with social aspect of school, pragmatic speech and certain accommodations as far as homework etc. IEPs are based on the needs of the particular child, not intelligence. We've been denied services with the Dept of Dev Disabilities because my kids were too intelligent, although they can't drive, won't answer the phone, won't go into stores and pay by themselves, can't speak up(advocate), couldn't make a phone call if they HAD to, unless it's my mom, to name just a few things... As far as a service dog, they can be used to prompt the child if he isn't paying attention, tactile stimulation, and gives the kids something to focus on to help alleviate stress of being in public,just to name a few . Toni

( ) New to group

Just wanted to say hi and a little intro so you know who another quiet one is on the list. I might pop in on occassion but I'm not much of an authority on aspergers...

My son was "diagnosed" unofficially at 15 by his school. It took until last year when he hit 17 to get the psych docs to put it in writing. He was misunderstood as a child with a bad attitude, instead of one with needs. At least we know now what's making him tick.

Anyway, hi. I'm not sure I'll have much to contribute, although over the years we've tried a lot with some limited successes.

Deb

[Guest guest]

Thanks for more info. I'll contact the arthritis foundation and get

their free info. A few weeks ago they had Dawne on anti-biotics and

they didn't stop the other meds. I think she was just on the

Plaquenil and Celebrex, not the Methotraxate yet. They give her a

ton of pain meds so she can control the pain pretty good. Don't

know if they have any effect on the RA meds. Her doctor said she'd

be on pain pills the rest of her life so no sense in worrying about

addiction. Which in a way is kind of nice as so many doctors don't

think that way. She hopes not to have to do that tho'. This week

other than the " cold " in her eye, she seemed to tolerate the

Methotraxate better. Only felt slightly sick on Sunday, the day she

takes her pills and the red splotches on her face went away by

Monday evening.

Thanks again, I'm glad I found this group!

Vicki

> > > Hi All-

> > > My daughter was diagnosed with RA about 4 months

> > ago. She is

> > scared to death of the meds she has to take and

> > scared to do

> > research, so I am her " official " researcher and info

> > gatherer!

> >

> >

> >

>

>

>

>

_____________________________________________________________________

_______________

> Be a better pen pal.

> Text or chat with friends inside . See how.

http://overview.mail./

>

[Guest guest]

Welcome to the group Amy. I am soon to be 44 and live in Missouri.

I work part time and I am on methotrexate injections, prednisone, and arava.

I was tested for gout when I was about 22 and the nurse laughed because she

thought the doc was nuts. Luckily it came back neg.

I have trouble walking especially after sleeping or

sitting for long periods. I have been married 20 year and have

two kids and lot's of furbabies.

Joy

cleo2557 <cleo2557@...> wrote:

Hello all! I'm new to the group. My name is Amy (Cleo is my cat)from

Virginia, I'm 45, and I've been diagnosed with RA for 10-

years. I was diagnosed when my doctor ran additional tests on me when

my husband and I were planning to have a baby. I have had gout since I

was in high school - rare for a woman of that age - lucky me! My

doctor just couldn't get it under control, and when he ran more

extensive tests, the RA factor finally showed up. I'm currently on

Remicade, and it seems to be working well. For years, I was in almost

constant pain, and had real difficulty walking. I credit Remicade, and

a great doctor, with giving me back my life.

I do suffer from almost constant exhaustion, joint deformity, and

recently quit my very high stress job to take some time off to

just " feel better. " It's working pretty well, and I'll look for a new

job after the first of the year.

[Guest guest]

Hi Amy!

Welcome to the group! Where in VA are you? I live in Charlottesville, work

in Culpeper & my rheumy is in DC. I'm 30 and have had RA for 8 years now (dx'd

when I was 22). I still work full time thanks to Remicade, Methotrexate, Folic

Acid, Flexerill & 1 mg of Prednisone (soon to be 0). I think the key to my

success has been that I started MTX 2 weeks after I was dx'd (about 2 months

after symptoms 1st started). I started Remicade 5 months after that and I'm

still doing well. If fact I'm home today for my Remicade treatment. My awesome

insurance lets me use home health care.

Take care,

Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The 2007 Charlottesville Arthritis Walk was a success!

We raised just over $30,000 for research & programs for people with arthritis!

" Never underestimate the power of a small, dedicated group of people to change

the world -- indeed, it's the only thing that ever has. " (Margaret Mead)

---------------------------------

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