Confused

[Guest guest]

Oh - just using the acronym for " missing in action " .

>

> what does the term MIA mean? I tried to google this but failed.

> Loreta

>

[Guest guest]

http://en.wikipedia.org/wiki/Missing_in_action

=====

[Guest guest]

Hi Sally,

Welcome to the group. Your babies are young and you may still be able

to reposition them and get a lot of improvement. basically the idea is

to keep them off the flat side, using tummy time, bumbo chair, etc and

changing their sleep position.

Do your babies have torticollis? this is a shortened neck muscle that

causes the baby to prefer resting on one side of their head, turning

their head one way only etc. Tort requires physical therapy to stretch

the muscle. Once that happens the baby will be more comfortable on the

other side. If the baby has tort you'll need to do exercises plus

reposition. If the baby doesn't have tort, repo alone can make a big

difference. Check out the files section for repo tips.

There is no way to know how much improvement you'll get with repo, but

you can try it for a month or so then decide. If you do decide to band

you can definitely appeal to UHC to get them to pay. You may not win,

but some do and it is worth trying. If you want to persue banding now,

you'll also find lots of info and advice here.

My daughter wore a starband from age 5 to 10 mo for brachycephaly

(flat in back) and had great correction.

take care.

-christine

mom to sydney/ 10.5 mo/ starband grad 10-06

>

> Hi,

>

> My name is Sally and we have 4 1/2 month old twins. At the 4 month

> appt, our pedi pointed out their flat heads and sent us for an

> evaluation at Cranial tech. We have been advised the use of docband

> for both the babies. Our insurance is UHC and they will not cover the

> cost. We are looking at $4,500 for both kids. My question is - is it

> worth the cost? Some ppl seem to think that the docbands are not

> necessary and that their heads should round out on their own. My son's

> flat spot is not that bad but my daughter has very prominent flatness

> and I am scared - what if it does not round out on its own? Also if

> you used the band, did it actually help??

>

> Thanks soooo much!!!

>

> Sally

>

[Guest guest]

Hi Sally:

I would not give up on UHC paying for the bands as long as you have

DME coverage in your policy. They do pay for the bands in Ohio but it

is always a battle. You need a strong letter from your neurosurgeon

along with anthropometric data depicting that your child's head meets

all of their criteria for cranial vault asymmetry.

Neurosurgeons are extremely busy so it may take numerous phone calls

to his nurse or secretary before you have the letter in hand.

There are also some lawsuits against insurance companies that have

been successful. Check the internet (plagiocephaly lawsuits.

There is also a lawyer that has published a book on fighting

insurance companies denying coverage for cranial bands. Go to

http://plagiocoach.com/legalassist.html

The author's main premise in his book is to fight each insurance

company's rejection for coverage by appealing their decision and to

never give in. It costs insurance companies a bundle to review each

appeal. I would also suggest writing to your local news paper and

contacting your local news stations about your problem and then make

the insurance company aware of the direction you will be taking.

Hopefully your perserverance will pay off and help other parents

experiencing the same difficulties.

Good luck!

Cole CO

[Guest guest]

Hi, Sally, my pediatrician told me the same thing too that it will

just round out as the baby grows.I have noticed my baby's flat head

at first at 4 months old.We have tried repositioning for 2 months

and it had very little improvement.I had mixed feelings too about

getting the helmet because sometimes my daughter's head looked okay

and there are other days that it really looked bad and scary.When I

learned that there are older plagio kids,it only shows that

sometimes babies head just won't round out on it's own.That's when

we made a decision to put her in a band. I know, it's a financial

burden if your insurance doesn't cover for it.My daughter has

brachycephaly and she has been wearing her starband for over 2

weeks now.I can see a little improvement already at this time, and

I'm happy and content that I got her banded.

Riza

- In Plagiocephaly , " sal_dallas_sally "

<sal_dallas_sally@...> wrote:

>

> Hi,

>

> My name is Sally and we have 4 1/2 month old twins. At the 4 month

> appt, our pedi pointed out their flat heads and sent us for an

> evaluation at Cranial tech. We have been advised the use of docband

> for both the babies. Our insurance is UHC and they will not cover

the

> cost. We are looking at $4,500 for both kids. My question is - is

it

> worth the cost? Some ppl seem to think that the docbands are not

> necessary and that their heads should round out on their own. My

son's

> flat spot is not that bad but my daughter has very prominent

flatness

> and I am scared - what if it does not round out on its own? Also if

> you used the band, did it actually help??

>

> Thanks soooo much!!!

>

> Sally

>

[Guest guest]

Hello. At 4.5 months old you do still have some time to try to

reposition the babies and keep them off their flat spots. Sometimes

this will help improve their head shapes. Repositioning can be a

tough job though and must be done constantly along with tummy time,

to get the best results. Though, once the babies reach 6 months,

it's best then to make the decision to band or not. To answer your

question of " is it worth it? " (to band).... YES YES YES! We tried

repositioning with our Daughter and didn't see much improvement, so

she was banded shortly after 7 months old. I would do it again in a

heartbeat! She got great correction after wearing the band for just

11 weeks in the band.

As far as UHC not covering the DOCband.... I'm sure that others will

tell you too that you can appeal that.... many others have had

success appealing their insurance and getting at least partial

coverage for the band. If you try repositioning and you still

aren't happy with their head shapes, then go ahead with the band.

Because If you didn't get the band and your babies heads never

improved, would you regret it later? That is something that you

have to really ask yourself.

Good luck with your decision and keep us updated.

Jen

(27.5 mo), tort resolved, Hanger Band grad

(4.75 years)

>

> Hi,

>

> My name is Sally and we have 4 1/2 month old twins. At the 4 month

> appt, our pedi pointed out their flat heads and sent us for an

> evaluation at Cranial tech. We have been advised the use of docband

> for both the babies. Our insurance is UHC and they will not cover

the

> cost. We are looking at $4,500 for both kids. My question is - is

it

> worth the cost? Some ppl seem to think that the docbands are not

> necessary and that their heads should round out on their own. My

son's

> flat spot is not that bad but my daughter has very prominent

flatness

> and I am scared - what if it does not round out on its own? Also if

> you used the band, did it actually help??

>

> Thanks soooo much!!!

>

> Sally

>

[Guest guest]

My ped. told me to wait until my son was 9 months old to see if his

plagio. would round out on it's own. Personally I think it's their

mantra, as so many parents have the same stories about their doctors

as well. At 3 months I went to CT for a consult against her advice,

and they said he was mild/moderate because of his ear misalignment

and could benefit from the band. They also said we could try

aggressive repo. for a few months since he was so young, along with

stretches for his torticollis. We tried for 2 1/2 months, anything

to avoid banding. In the end, he had some definite improvement, but

not enough that we were happy with, so we decided to band. I am

SOOO glad we did, as he started at 6 months old, and only wore his

band for 11 weeks. I think the scariest/hardest part is making the

decision to band,casting, and waiting for the band to arrive. Once

you get started with the actual band it's very easy, and no big deal

at all. Looking back I wonder what all my worry was over. Yes,

they really do work as everyone here can attest to, and are so worth

it. Follow your own heart, as only you know what's best for your

child, and you're sure to make the right choice.

>

> Hi,

>

> My name is Sally and we have 4 1/2 month old twins. At the 4 month

> appt, our pedi pointed out their flat heads and sent us for an

> evaluation at Cranial tech. We have been advised the use of docband

> for both the babies. Our insurance is UHC and they will not cover

the

> cost. We are looking at $4,500 for both kids. My question is - is

it

> worth the cost? Some ppl seem to think that the docbands are not

> necessary and that their heads should round out on their own. My

son's

> flat spot is not that bad but my daughter has very prominent

flatness

> and I am scared - what if it does not round out on its own? Also if

> you used the band, did it actually help??

>

> Thanks soooo much!!!

>

> Sally

>

[Guest guest]

Hi Sally

I thought I'd share my experience with you. I have

daughter who is almost 5 months who has moderate

plagio. I have been told by my midwife and my doctor,

" It will round out on it's own. " But, I did some

research and I have been repositioning for almost two

months and have seen some minor improvement. However,

I must say it has been absolutely the most difficult

thing to do! It is a constant job to keep her off the

flat spot. During the day, I have her on her tummy or

I'm holding her. At night and during nap times I sleep

beside her bed and move her head every time she turns

her head to the flat spot. I barely get any sleep. I

have no idea if this amount of repositioning is really

necessary or not. But considering how little the

improvement has been, I can't imagine that my

daughters head would actually have rounded out on it's

own. I am now wondering if we should have banded...and

maybe we will still need to. Anyway, I wish I had

known at the beginning how much work was involved with

repositioning as it would have affected my decision. I

wish you luck with whatever you decide to do.

Colleen

--- j2la899 <j2la899@...> wrote:

> My ped. told me to wait until my son was 9 months

> old to see if his

> plagio. would round out on it's own. Personally I

> think it's their

> mantra, as so many parents have the same stories

> about their doctors

> as well. At 3 months I went to CT for a consult

> against her advice,

> and they said he was mild/moderate because of his

> ear misalignment

> and could benefit from the band. They also said we

> could try

> aggressive repo. for a few months since he was so

> young, along with

> stretches for his torticollis. We tried for 2 1/2

> months, anything

> to avoid banding. In the end, he had some definite

> improvement, but

> not enough that we were happy with, so we decided to

> band. I am

> SOOO glad we did, as he started at 6 months old, and

> only wore his

> band for 11 weeks. I think the scariest/hardest

> part is making the

> decision to band,casting, and waiting for the band

> to arrive. Once

> you get started with the actual band it's very easy,

> and no big deal

> at all. Looking back I wonder what all my worry was

> over. Yes,

> they really do work as everyone here can attest to,

> and are so worth

> it. Follow your own heart, as only you know what's

> best for your

> child, and you're sure to make the right choice.

>

>

>

>

>

>

>

>

>

>

>

>

> >

> > Hi,

> >

> > My name is Sally and we have 4 1/2 month old

> twins. At the 4 month

> > appt, our pedi pointed out their flat heads and

> sent us for an

> > evaluation at Cranial tech. We have been advised

> the use of docband

> > for both the babies. Our insurance is UHC and they

> will not cover

> the

> > cost. We are looking at $4,500 for both kids. My

> question is - is

> it

> > worth the cost? Some ppl seem to think that the

> docbands are not

> > necessary and that their heads should round out on

> their own. My

> son's

> > flat spot is not that bad but my daughter has very

> prominent

> flatness

> > and I am scared - what if it does not round out on

> its own? Also if

> > you used the band, did it actually help??

> >

> > Thanks soooo much!!!

> >

> > Sally

> >

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

I totally agree with this last post. My pedi told us to wait till he was 6 mo before she'd write the rx which I wanted sooner but couldn't get her to budge. Tried repoing and drove myself and everyone else insane with that part. I was so worried to band but a friend told me she goes your worrying yourself so much now I think you should go ahead. And me being the only person I know that has ever had a child with plagio. I'd never known anyone and all my friends none of them knew of any that had either. So I felt like I was all alone but his group has helped so much. My son was banded at 7 mo and is still in his band but has about 3 more weeks the ortho thinks. I regret not getting started sooner but didn't have a choice. And let me tell you I didn't see improvement right away like I was expecting so that was very disappointing but after 12 weeks so far i'm so glad we did. B/c he also had tort which was hard for him to lay on his back or other side b/c of the work he had to

do to hold his head toward that opposite side b/c of the bulging other side. And now he turns that way all the time and sleeps that way to. Yes we graduated physical therapy. Okay sorry for going on and on but now i'm a little nervous about him graduating from wearing the band more nervous I think then I was before getting it put on. So I hope this has helped a little as well. I think most of us have been nervous and confused whether to band or not. And UHC is paying for our band but they filed it under durable medical equipment so you might ask them if that's how they file it that way or not. Ins confuses me so I don't know all that stuff but I do know that's what they filed ours under and got it covered. I wish you the best of luck. j2la899 <j2la899@...> wrote: My ped. told me to wait until my son was 9 months old to see if his plagio. would round out on it's own. Personally I think it's their mantra, as so many parents have the same stories about their doctors as well. At 3 months I went to CT for a consult against her advice, and they said he was mild/moderate because of his ear misalignment and could benefit from the band. They also said we could try aggressive repo. for a few months since he was so young, along with stretches for his torticollis. We tried for 2 1/2 months, anything to avoid banding. In the end, he had some definite improvement, but not enough that we were happy with, so we decided to band. I am SOOO glad we did, as

he started at 6 months old, and only wore his band for 11 weeks. I think the scariest/hardest part is making the decision to band,casting, and waiting for the band to arrive. Once you get started with the actual band it's very easy, and no big deal at all. Looking back I wonder what all my worry was over. Yes, they really do work as everyone here can attest to, and are so worth it. Follow your own heart, as only you know what's best for your child, and you're sure to make the right choice.>> Hi, > > My name is Sally and we have 4 1/2 month old twins. At the 4 month> appt, our pedi pointed out their flat heads and sent us for an> evaluation at Cranial tech. We have been advised the use of docband> for both the babies.

Our insurance is UHC and they will not cover the> cost. We are looking at $4,500 for both kids. My question is - is it> worth the cost? Some ppl seem to think that the docbands are not> necessary and that their heads should round out on their own. My son's> flat spot is not that bad but my daughter has very prominent flatness> and I am scared - what if it does not round out on its own? Also if> you used the band, did it actually help??> > Thanks soooo much!!!> > Sally> __________________________________________________

[Guest guest]

Hello. At 7 months of age, natural correction and/or correction

aided by repositioning is not as likely as it is prior to 6 mo, since

a baby's growth slows down after about 6mo. MANY Doctors tell

parents that a baby's head will " fix itself " , but sadly this often is

not true. At your Son's age, the best thing that I can recommend is

for you to look at your Son's head and decide if you are happy with

his current head shape. If the answer is no, then you would probably

be best to get him a band as his age, since natural correction is not

guaranteed. At least with the band you would know that you did the

best you could for him. It can be a very tough decision to make....

just follow your gut. If you do decide to band him, I can tell you

that it is not nearly as bad as you might think. Most babies adapt

very well to their bands.

We are here to support you, whichever decision you make.

Jen

(29.5 mo), tort resolved, Hanger Band Grad

(5 years)

>

> My son was diagnosed with mild Bracycephaly.

>

> We have our scan tomorrow to determine measurements and a proper

> treatment program.

>

> However, I REALLY do not want to put my son in a band or helmet if

it

> is not truly necessary and I am not too sure what is considered

> necessary or not.

>

> Does anyone know the success rate for babies of 7 months to grow

out

> of this condition as they start to stay off their heads with

natural

> development? He has started sitting up and his off his head

majority

> of the day now.

>

> I find it confusing that some doctors tell parents not to worry and

> the baby's head 'fix' itself.

>

> Any advice????

>

[Guest guest]

Hi,

my daughter had severe brachy (cranial index 100% - meaning her head

was equally wide and long). If your baby spends less time on his head

now you will likely see some rounding, but with a band all the new

growth would be directed to the flat area - so the change would be

more dramatic. Our doc (cranial facial plastic surgeon) recommends

banding babies above 90%. After you get the scan done these numbers

may make more sense.

How does your baby sleep now? If he's still sleeping on his back he'll

be putting some pressure there, so at night his growth in the flat

area may be restricted. Some babies automatically switch to tummy

sleeping when they get older (for my daughter it was around 9 mo) but

if you want to switch him you may want to check with your ped.

Banding is much easier than you think, but I understand not wanting

your son to wear it. It is a difficult decision, especially if the

brachy is mild. Since you can't tell how much rounding you'll get

without a band, you have to decide if you are okay with his head the

way it is. I don't know why doctors are so unhelpful on this. I think

largely they are just uneducated on the topic - sadly.

let us know how the scan goes.

-christine

mom to sydney/ 12.5 mo/ starband grad 10-06

>

> My son was diagnosed with mild Bracycephaly.

>

> We have our scan tomorrow to determine measurements and a proper

> treatment program.

>

> However, I REALLY do not want to put my son in a band or helmet if it

> is not truly necessary and I am not too sure what is considered

> necessary or not.

>

> Does anyone know the success rate for babies of 7 months to grow out

> of this condition as they start to stay off their heads with natural

> development? He has started sitting up and his off his head majority

> of the day now.

>

> I find it confusing that some doctors tell parents not to worry and

> the baby's head 'fix' itself.

>

> Any advice????

>

[Guest guest]

-

Thanks for your advice. I appreciate it.

Yes, once we get the scan, it will give us a better idea on where he

stands with severity. At glance, our doctor(Craniofacial specialist)

said it was mild to moderate. He does not have any facial

asymmetrical issues either.

He also recommended some PT, but I am not too sure how this will

directly help him and the therapist said it would only indirectly

help him in terms of him learning other methods to keep him off his

head...such as tummy and crawling. However, he is so resistant to

being on his stomach and rolls to his back. Not too sure the point

of this therapy and the need to make my son miserable holding him on

his stomach. He will roll when he is ready to roll.

He is sitting up most of the day or in his exersaucer...so, he is

off his head a majority of the day. Overnight is really the only

time he is on his head, but that is 10+ hours a night.

He does nap on his stomach and we put him to sleep overnight on his

side, but he moves around alot overnight and ends up on his back.

There are just no real definitive answers and part of me wants to

just let nature take its course, but I want to do what is best for

him, but I don't know if banding is the right choice either.

We were told that it is strictly cosmetic and will not affect his

brain development. So, that is very reassuring, otherwise there

would not even be a choice.

I just wish pediatricians had more knowledge about repositioning at

night and daily routines. When we asked our ped about his flatness

around 4 months, we were told...'more tummy time' but he hated it

and we gave up...but there are lot of other techniques that could

have helped us.

I am very frustrated and upset.

> >

> > My son was diagnosed with mild Bracycephaly.

> >

> > We have our scan tomorrow to determine measurements and a proper

> > treatment program.

> >

> > However, I REALLY do not want to put my son in a band or helmet

if it

> > is not truly necessary and I am not too sure what is considered

> > necessary or not.

> >

> > Does anyone know the success rate for babies of 7 months to grow

out

> > of this condition as they start to stay off their heads with

natural

> > development? He has started sitting up and his off his head

majority

> > of the day now.

> >

> > I find it confusing that some doctors tell parents not to worry

and

> > the baby's head 'fix' itself.

> >

> > Any advice????

> >

>

[Guest guest]

Thanks, Jen.

Our scan is tomorrow and it should give us a better picture on what

route we are going to take with him.

> >

> > My son was diagnosed with mild Bracycephaly.

> >

> > We have our scan tomorrow to determine measurements and a proper

> > treatment program.

> >

> > However, I REALLY do not want to put my son in a band or helmet

if

> it

> > is not truly necessary and I am not too sure what is considered

> > necessary or not.

> >

> > Does anyone know the success rate for babies of 7 months to grow

> out

> > of this condition as they start to stay off their heads with

> natural

> > development? He has started sitting up and his off his head

> majority

> > of the day now.

> >

> > I find it confusing that some doctors tell parents not to worry

and

> > the baby's head 'fix' itself.

> >

> > Any advice????

> >

>

[Guest guest]

Yea, was diagnosed @95% and they are hoping to get him down to

in the 80's. We pick up the STARband next Weds. I am bit nervous and

still keep thinking I see a positive change...but, I really think I

am in a bit of denial.

Do you remember how long it took for Sydney to adjust to the band? I

am just really nervous he is going to HATE it and then what?

How long did your daughter wear the band? We were told 4 months and

they did not think after that point, we would see much more

change...because he will be close to a year old and the head does

not grow that much after that point...less than 0.5cm a month.

Thanks for your support...it is amazing how many families are

experiencing the same situation? I never heard of this issue prior

to my son...too bad doctors are not more educated on the issue and

warn parents to repo their babies overnight, naps and in the swings

and bouncey chairs.

> >

> > My son was diagnosed with mild Bracycephaly.

> >

> > We have our scan tomorrow to determine measurements and a proper

> > treatment program.

> >

> > However, I REALLY do not want to put my son in a band or helmet

if it

> > is not truly necessary and I am not too sure what is considered

> > necessary or not.

> >

> > Does anyone know the success rate for babies of 7 months to grow

out

> > of this condition as they start to stay off their heads with

natural

> > development? He has started sitting up and his off his head

majority

> > of the day now.

> >

> > I find it confusing that some doctors tell parents not to worry

and

> > the baby's head 'fix' itself.

> >

> > Any advice????

> >

>

[Guest guest]

Hi,

sydney adjusted in about 2 weeks. she hadn't been a good sleeper, and

she got her first cold at the same time as the band, so we ended up

going back to co-sleeping - which we are still doing - ugh. but I

would say most babies even adjust to sleeping better than she did.

sydney did lose a lot of hair under her band (she started at 5 mo and

was already thinning) but that is a little unusual too. she never

really minded the band except for us taking it on and off. she did get

an itchy head when it was off so we would sometime take aveno baby

oatmeal bath mixed with water to make a paste and put on her head

during the bath. this helped.

i wish i had known enough to prevent sydney's problem, but all in all

it was an easy enough process, and she had good results. I'm sure you

will too.

take care. -christine

mom to sydney/ 12.5 mo/ starband grad 10-06

> > >

> > > My son was diagnosed with mild Bracycephaly.

> > >

> > > We have our scan tomorrow to determine measurements and a proper

> > > treatment program.

> > >

> > > However, I REALLY do not want to put my son in a band or helmet

> if it

> > > is not truly necessary and I am not too sure what is considered

> > > necessary or not.

> > >

> > > Does anyone know the success rate for babies of 7 months to grow

> out

> > > of this condition as they start to stay off their heads with

> natural

> > > development? He has started sitting up and his off his head

> majority

> > > of the day now.

> > >

> > > I find it confusing that some doctors tell parents not to worry

> and

> > > the baby's head 'fix' itself.

> > >

> > > Any advice????

> > >

> >

>

[Guest guest]

Dear Lynsey,

I am so sorry that you are a member of our RA family, but happy that you are

here in our group! I too had to take prednisone to be able to walk. Before

I started it I could not walk across the street. I am now down to 5mg per

day, and that is as far as I can go. But I just had cataract surgery in both

eyes and have had problems with a tongue surgery that would not heal! So I

agree with you, it is a mixed blessing, but I am 58 and have only been on it

for 4 years and then off and on for Asthma flares. For me it is a qualaity of

life issue, I think I would look at it different if I were younger.

The weight gain is no fun. My Dr. told me to get " larger " clothes????But I

think that all meds for RA cause weight gain, except maybe MTX. Check with

your Dr. I really wish you luck.

Gentle Hugs & Prayers

Carol M. in CA

@>~~~~

<BR><BR><BR>**************************************<BR> Check out free AOL at

http://free.aol.com/thenewaol/index.adp. Most comprehensive set of free

safety and security tools, millions of free high-quality videos from across the

web, free AOL Mail and much more.

[Guest guest]

Hi Lynsey,

I understand how you are feeling. I am a heck of alot older than

you. But I feel do i have to do this forever taking pills. And what

my Doctor says is yes. i recently lost 80lbs so far from doing a

weight loss lapband surgery. Then I was hurting so bad they put me on

predizone and it did wonders but so afaird of the weight gain. That

recently I got off of it. But I am on Mtx, sulfizine and Naperson. I

seem to mange the mimmal pain i have. Doctor wants me to go on Embrel

again what should i do. There is sides affects to that to. Its like

Damn if i do and hurt like hell if i don't. Oh I have RA. I will be

thinking of you. Take care, Marilyn

>

> I was diagnosed with RA about 9 months ago and was immediately put

on

> prednisone for the pain and it had worked wonders. Unfortunately,

so

> far sulfsalazine has not worked and am now on Methotrexate, but

have

> been having some bad side effects. They lowered the dosage of the

> mtx and now raised it to see if I can tolerate it after getting

used

> to it, but even if my body can tolerate it, it doesn't seem to be

> working for the RA. In April I'm most likely going to be put on

> Enbrel of Remicade. I just want to get off the prednisone. It is

> such a blessing and a curse. In one way it took away so much pain

> were within a week or two of taking it I can walk again with only

> moderate pain and actually start living, but I've also gained about

> 25 pounds and just want to get off of it. It also seems like

> everytime I taper down to a smaller amount I just end up having to

up

> it to more. Reading other people stories I see that some are still

on

> the stuff for a very long time. I was also wondering if at 27

years

> old I'm already going to be taking the injections, what happens if

> those don't work? Does the RA get worse and need different

treatment

> later in life? I'm just a little overwhelmed knowing I'm always

going

> to have to be dealing with this. Sorry for the rant.

> Thanks,

> Lynsey

>

[Guest guest]

Marilyn, I don't have any adverse side effects from Enbrel, and you

might not, either. But if you did, you could always discontinue it. It

keeps my pain and inflammation at bay, also.

Sue

On Wednesday, February 21, 2007, at 12:18 PM, oeayc wrote:

> Doctor wants me to go on Embrel

> again what should i do. There is sides affects to that to. Its like

> Damn if i do and hurt like hell if i don't. Oh I have RA.

[Guest guest]

I have been on Prednisone for varying issues for the past 10 years. Finally,

I'm totally off it........and I can barely stand up or sit down. I thought it

was my pelvis, but the dr says 'it's your back'. I see my rheumy next week and

he better come up with something else or put me back on the pred. It is

rediculous to walk around like I'm 90, when there is a medical solution. I know

that Prednisone is not good for bones, but I'm past worrying about that. I need

to continue working and I WANT to feel good. I've always been a type A

personality and slowing down as I got older has not been easy for me to

accept.......being forced to slow down is worse.

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPD

Just a woman of letters....

[Guest guest]

I have been taking Enbrel for 2 years. I feel like it has given me my life

back. At least I haven't become worse. I felt like I was spiraling downhill

at a very quick pace. I was diagnosed with RA at 33 now am 37. My insurance

required me to do several other drugs before the Enbrel due to the cost.

None of them helped me like the Enbrel has. It definitely hasn't " cured " me

but I feel that it has slowed the damage. When I started I also worried

about the side effects, however I feel that at times the side effects (which

I so far haven't experienced any) would be worth the improvement in my

quality of my life. I know that this drug hasn't been out long enough to

really know what the long term side effects are, but I really feel that I

would rather lead as much of a normal life as possible for as long as

possible. Good luck to you.

[Guest guest]

Lynsey,

It's easy to feel overwhelmed. Try to take things one step at a time.

Why do you have to wait until April to try either Enbrel or Remicade?

Your results will not necessarily be like those in stories you might hear

here. There is much reason to be hopeful that you will soon be able to get

your RA under control.

Not an MD

[ ] Confused

>I was diagnosed with RA about 9 months ago and was immediately put on

> prednisone for the pain and it had worked wonders. Unfortunately, so

> far sulfsalazine has not worked and am now on Methotrexate, but have

> been having some bad side effects. They lowered the dosage of the

> mtx and now raised it to see if I can tolerate it after getting used

> to it, but even if my body can tolerate it, it doesn't seem to be

> working for the RA. In April I'm most likely going to be put on

> Enbrel of Remicade. I just want to get off the prednisone. It is

> such a blessing and a curse. In one way it took away so much pain

> were within a week or two of taking it I can walk again with only

> moderate pain and actually start living, but I've also gained about

> 25 pounds and just want to get off of it. It also seems like

> everytime I taper down to a smaller amount I just end up having to up

> it to more. Reading other people stories I see that some are still on

> the stuff for a very long time. I was also wondering if at 27 years

> old I'm already going to be taking the injections, what happens if

> those don't work? Does the RA get worse and need different treatment

> later in life? I'm just a little overwhelmed knowing I'm always going

> to have to be dealing with this. Sorry for the rant.

> Thanks,

> Lynsey

[Guest guest]

The injections aren't so bad. Of course, I've never been scared of

needles. It did take me a long time to get used to the idea of

sticking myself, so my dad used to give me my injections. He gave

them to me from the time I was 16 until I was probably 17. I'm glad

I have a dad that was able to do it, I hear a lot of parents say that

they can't handle the thought of sticking their child (even a nurse

was like that, although she still does it, it just bothers her). The

first time I decided to inject myself, this was after I had gone to a

leadership seminar and the nurse on staff injected me and told me

that " I really should learn to do it myself because at college I'd

have to do it " , I sat there and counted to 3 about 5 times

and " tried " to poke myself. I didn't even realize at the time that I

got the needle in every time, LOL. So I had poked myself 5 times

before realizing that I didn't feel it. It just takes some getting

used to.

I know I have a different perspective on this because I still go to

my rheumatologist at Riley Hospital for Children, so I see kids with

RA. No matter how bad I feel, I think of these kids. I at least got

to have a normal childhood and was able to cheer, play basketball,

run track, show horses, and mess with all the farm animals. I kept

that up even after my Dr's told me to give it up (my RA set on very

quickly when I was 16), but I think that kept me mobile. I just

think about those kids who are never able to walk, or they see their

little brothers and sisters playing normally and not understand why

they can't do the same things without pain.

There is always a chance that the meds won't work as well. For

Enbrel I've heard it around 5 years that it tapers off, but I've been

on it for 6 years now and it still works for me. Everyone is

different. As soon as I was diagnosed, I was started on injections

and that's another reason why I function fairly normally, most people

don't know that there's anything wrong with me, but of course, I

don't run around advertising that I have this disease, but if it

comes up I'll talk about it.

I'm not sure if this helped at all, I hope it did,

Autumn

[Guest guest]

Sandi, I think the buring must go with it as I, too, have a lot of buring pain,

but it is worse if I don't take my meds. I do find that some exercise helps. I

also seem to get some help when I take about a tsp of MSM daily.

--

Leona, Lee, Jackie, Tvksi, Granny and Momma. We wish you all the best,

---- sandrajostillwell <sandrajostillwell@...> wrote:

> I am soooo confused about pain releif. I was diagnosed with RA in oct.

> 2006.

[Guest guest]

Hi Patty-

If you google " untreated plagiocephaly " some great articles come up.

I've uploaded one to our Files section to a new folder I just

created called Untreated Plagio, if you want to take a look at it.

One thing this article/study points out is what I think is one of

the main problems, that there aren't enough parents out there

willing to be in the " control " group of studies. Meaning there

aren't enough of us out there who are willing to say, let's just see

how it goes, and then they're children can be followed up on in 5 or

10 years to see what kind of problems that might have that may be

related to untreated plagio. So it's true that some of the stuff

that's mentioned could be purely speculation, but I for one, didn't

want to take that chance with my son. Also, even if you go purely on

cosmetic reasoning alone, I feel that was important enough to band

my son. Not that he has to be perfect, I just wanted to know that I

did what I could for HIM to feel good about HIMSELF as he got older.

Hope that helps some.

Anyone else who comes across any good research on untreated plagio,

please upload it to the files section.

Thanks!

Jake-2 (DOCBand Grad 9/08)

Jordan-4.5

>

> I just spoke to our orthotist yesterday and he stated there is no

> research that proves a child with plagio will have medical related

> difficulties later on. When I asked my daughter's pediatrician

> recently what were the medical effects later on of a flat head she

> said cosmetic only. I am confused as I do not want my daughter to

> wear the helmet if she doesn't medically need to. She has been

> wearing it for a month with no major issues and is a very easy

going

> baby and doesn't mind it. However, I'm sure it's uncomfortable

for

> her and it is digging into her ear which the orthotist tried to

fix

> again yesterday. Does anyone know of any concrete research that

> prooves wearing a helmet will help prevent headches, TMJ,

> developmental difficulties, etc. later on? We are going to have

her

> wear the helmet for a few months as I want to be proactive but why

> don't medical professionals seem to know anything about this? Our

> daughter's plagio is not severe but falls within the measurements

of

> needing a helmet. After hearing this from the orthotist yesterday

> and based on what her pediatrician says it makes me wonder if

we're

> doing the right thing but since I haven't heard of any negative

> effects of wearing the helmet, I am going to have her keep wearing

it

> in hopes it does help. If anyone knows of any research could you

> please let me know. Thank you.

> Patty from Maine (near Binghamton), New York

>

[Guest guest]

Here are some links to check out:

visual issues

http://www.aans.org/Library/Article.aspx?ArticleId=10865

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=15956949 & query_hl=1

http://f1.grp.fs.com/v1/MEcVRhff8trpQ-QDJ0kYUYGitunNWOd--OdE5ZCis4G0uHQJ51fjNFVt3qathUPeK7cNs3tiMT1ZBfHCg5E/Plagio%20Studies%20and%20Research/Management%20of%20Plagiocephaly%20and%20Torticollis.pdf

(see particularly paragraph 4 on page 2)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=12867869 & dopt=Abstract

Auditory issues

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=12140415 & dopt=Abstract

http://drfeely.com/doctors/osteo_abstracts_7.htm

Developmental delays

http://pediatrics.aappublications.org/cgi/content/full/105/2/e26

Respiratory issues

http://ajrccm.atsjournals.org/cgi/content/full/163/4/947

Molly

Novato, California

Nicolas, 3, tort & plagio, STARband (CIRS Oakland)

4/24/06-9/12/06, Graduate!

, 5.5

, 9

Confused

I just spoke to our orthotist yesterday and he stated

there is no

research that proves a child with plagio will have

medical related

difficulties later on. When I asked my daughter's

pediatrician

recently what were the medical effects later on of a flat

head she

said cosmetic only. I am confused as I do not want

my daughter to

wear the helmet if she doesn't medically need to.

She has been

wearing it for a month with no major issues and is a very

easy going

baby and doesn't mind it. However, I'm sure it's

uncomfortable for

her and it is digging into her ear which the orthotist

tried to fix

again yesterday. Does anyone know of any concrete

research that

prooves wearing a helmet will help prevent headches, TMJ,

developmental difficulties, etc. later on? We are

going to have her

wear the helmet for a few months as I want to be

proactive but why

don't medical professionals seem to know anything about

this? Our

daughter's plagio is not severe but falls within the

measurements of

needing a helmet. After hearing this from the

orthotist yesterday

and based on what her pediatrician says it makes me

wonder if we're

doing the right thing but since I haven't heard of any

negative

effects of wearing the helmet, I am going to have her keep

wearing it

in hopes it does help. If anyone knows of any

research could you

please let me know. Thank you.

Patty from Maine (near Binghamton), New York

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

For more plagio info