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Welcome to the group. :)

~Esther & Carol~

''To get out of a difficulty, one

usually must go through it.''

" Never look down on anybody

unless you are helping them up. "

----- Original Message -----

From: <swaine.t@...>

< egroups>

Sent: Thursday, October 05, 2000 11:29 PM

Subject: [ ] New Member

> Hello

>

> Just signed up today. Results of a sweeping blood test, where they

> test for everything came back, elevated esr result. So I went

> searching to find out about it, and found this site. Don't know for

> certain if I have RA yet, but I know my knees are a problem. Got to

> go back for retesting etc. I'm 28. Bye for now, only keep this

> brief.

>

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

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Welcome , There are many of us still waiting for a diagnosis

and are re-testing as well. You have come to the right place and the

right people for support, information and an occasional chuckle when

things get you down. Please keep us posted as to your results.

Regards,

Sylvia

> Hello

>

> Just signed up today. Results of a sweeping blood test, where they

> test for everything came back, elevated esr result. So I went

> searching to find out about it, and found this site. Don't know

for

> certain if I have RA yet, but I know my knees are a problem. Got

to

> go back for retesting etc. I'm 28. Bye for now, only keep this

> brief.

>

>

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Welcome, !

Hope you like it here. We are a very smart, compassionate, and funny group.

Together we share excellent information and support.

An accurate diagnosis can take some time, but it is very much worth the wait

and trouble. Sorry you must go through this.

----- Original Message -----

From: " " <swaine.t@...>

< egroups>

Sent: Thursday, October 05, 2000 10:29 PM

Subject: [ ] New Member

> Hello

>

> Just signed up today. Results of a sweeping blood test, where they

> test for everything came back, elevated esr result. So I went

> searching to find out about it, and found this site. Don't know for

> certain if I have RA yet, but I know my knees are a problem. Got to

> go back for retesting etc. I'm 28. Bye for now, only keep this

> brief.

>

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

>

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Hello

Thanks for that. Not sure what is next, excpet another blood test I assume.

Then who knows. Been surfing to find out any info I can. At this point not

sure how much I am to read into the initial blood test. Although the first

thing the nurse asked as she saw the results on screen was if I had

Arthritis. If it is correct, I'll be glad to start doing something about

it. Might even have painfree horse riding again, but not done much in the

past 2 years, no horses near here just now. anyone know any good links for

a possible new starter? Thanks,

----- Original Message -----

From: Matsumura <Matsumura_Clan@...>

< egroups>

Sent: Saturday, October 07, 2000 12:32 PM

Subject: Re: [ ] New Member

> Welcome, !

>

> Hope you like it here. We are a very smart, compassionate, and funny

group.

> Together we share excellent information and support.

>

> An accurate diagnosis can take some time, but it is very much worth the

wait

> and trouble. Sorry you must go through this.

>

>

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  • 4 months later...

Welcome, Brannie! This is a good group. I have a friend

who is newly diagnosed with lupus - he thinks. You

answered a question I was going to post. Wasn't sure if

RA and lupus could be diagnosed together. Do you have a

postive Rheumatoid factor.

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Brannie,this bunch of nice people has a lot of members with multiple

diseases,most of them the same as yours. I only have RA so I'm one of

the lucky ones. So many of us have those days where it hurts to just

walk to the bathroom.I have had total hip replacements (which now have

to be repaired),my wrist has a metal plate in it and I have had both

shoulders replaced. One lung has some scarring from some inflammation

during a flare.

Where do you live? I am in Minnesota and have found lots of help for low

income people. I'm glad to meet you and hope we can help you in any way.

The other Joyce (namu)

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  • 1 month later...
Guest guest

welcome!! sounds like you have your hands full like the rest of us!!! i am

41, suffering from inflammatory spondyloarthropy, oa and suffering from some

internal bleeding from the meds and also a new insurance plan this year. have

been home on disability since december, started ss disability papers and

returning to my rheumi on monday for evaluation of whether i should return to

work.

kathy

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  • 2 weeks later...
Guest guest

Welcome Marie, you will love this group. there are some very

knowledgable and caring people here. And most important very

sympathetic. Ask andy questions that you might have, The brains of

this group(you know who you are :)) will find the answer.

Good luck,

a R.

> I would like to introduce myself. I'm Marie, age 43, mom to twins

Joe and

> , age 15.

>

> I was diag. with RA last April. I had not been feeling right for a

while

> and finally decided to get a physical. I knew I had a touch of

arthritis in

> my hands because they were stiff every now and then. Needless to

say when

> the test results came back I was a bit overwhelmed.

>

> My ANA test came back positive. I can't remember what my titter

count was,

> but it was in the low range. Based on that test and physical exam

my dr.

> told my I have serum neg. RA. He thinks there may be a mild case

of lupus

> lurking around too. He said we will have to wait a bit for

everything to

> fully declare itself.

>

> I am hoping I'm at the tail end of a nasty flare. These past 10

days of

> been pure hell. Everything aches, very tired, and my mood has been

anything

> but nice. I saw my rheumy last week. He told me to double my Vioxx

and gave

> me Ambien to help me sleep. Still waiting for the effects of either

> medication to work.

>

>

> Marie

> AKA TwinMom

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Guest guest

Welcome, Marie!

Sorry that you haven't been feeling well. I hope your flare ends very soon.

Too bad also that your diagnosis is still fairly uncertain. Don't worry.

That's a common problem with rheumatic diseases. Sometimes it's very hard to

tell in the beginning exactly which disease you have.

Does your physician have a Plan B in case the Vioxx still doesn't work even

after you increase the amount?

Glad you found us. Looking forward to getting to know you.

----- Original Message -----

From: " M. Bowen " <bowens@...>

< >

Sent: Tuesday, March 27, 2001 4:28 PM

Subject: [ ] New Member

> I would like to introduce myself. I'm Marie, age 43, mom to twins Joe

and

> , age 15.

>

> I was diag. with RA last April. I had not been feeling right for a while

> and finally decided to get a physical. I knew I had a touch of arthritis

in

> my hands because they were stiff every now and then. Needless to say when

> the test results came back I was a bit overwhelmed.

>

> My ANA test came back positive. I can't remember what my titter count

was,

> but it was in the low range. Based on that test and physical exam my dr.

> told my I have serum neg. RA. He thinks there may be a mild case of lupus

> lurking around too. He said we will have to wait a bit for everything to

> fully declare itself.

>

> I am hoping I'm at the tail end of a nasty flare. These past 10 days of

> been pure hell. Everything aches, very tired, and my mood has been

anything

> but nice. I saw my rheumy last week. He told me to double my Vioxx and

gave

> me Ambien to help me sleep. Still waiting for the effects of either

> medication to work.

>

>

> Marie

> AKA TwinMom

>

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Guest guest

Welcome Marie. You can join our club of the undiagnosed. We have many

members here that are not certain of their diagnosis, myself included. I

was told I had RA for 20+ years, but recently was told I have psoriatic

arthritis.

I'm 46 and am on Enbrel, mtx, vioxx, vicodan, fosamax and several

supplements.

I hope you feel better soon. Is your doctor planning on giving you DMARD's

such as plaquenil, mtx, gold, or Arava? The Vioxx is just an

anti-inflammatory to control inflammation, but doesn't stop the progression

of the disease. Your doctor may be running more tests to find out what

you have before deciding on treatment. I hope you get answers soon, so

that you can get proper treatment.

A very close friend of mine have twins too, a boy and a girl that just

turned 16. The girl looks just like her mom and the boy is a mirror image

of his dad. They have been a lot of fun over the years and are good friends

to my 2 children.

Glad you found us, but sorry it has to be because of illness.

a

----- Original Message -----

From: " M. Bowen " <bowens@...>

< >

Sent: Tuesday, March 27, 2001 5:36 PM

Subject: [ ] New Member

> I would like to introduce myself. I'm Marie, age 43, mom to twins Joe

and

> , age 15.

>

> I was diag. with RA last April. I had not been feeling right for a while

> and finally decided to get a physical. I knew I had a touch of arthritis

in

> my hands because they were stiff every now and then. Needless to say when

> the test results came back I was a bit overwhelmed.

>

> My ANA test came back positive. I can't remember what my titter count

was,

> but it was in the low range. Based on that test and physical exam my dr.

> told my I have serum neg. RA. He thinks there may be a mild case of lupus

> lurking around too. He said we will have to wait a bit for everything to

> fully declare itself.

>

> I am hoping I'm at the tail end of a nasty flare. These past 10 days of

> been pure hell. Everything aches, very tired, and my mood has been

anything

> but nice. I saw my rheumy last week. He told me to double my Vioxx and

gave

> me Ambien to help me sleep. Still waiting for the effects of either

> medication to work.

>

>

> Marie

> AKA TwinMom

>

>

>

>

>

>

>

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  • 3 weeks later...
Guest guest

Paige,

Do you know what kind of helmet it is? Is it a helmet or a band? My son

has a Starband and in 4 weeks we have seen much improvement. The doctors

had me reposition him for 3 1/2 months and it didn't get any better. My son

has torticollus also. Make sure you get her into physical therapy, it does

wonders. Also, make sure that they put the fastening strap on the opposite

side of the torticollus. We made that mistake in his first starband and it

made the tort worse. It seems most pediatricians say it will work it self

out. I have not seen or heard of a case yet. And who wants to take that

chance.

Good luck,

Cherie - 's Mom

-----Original Message-----

From: pgoode@... [mailto:pgoode@...]

Sent: Saturday, April 14, 2001 8:37 PM

Plagiocephaly

Subject: New Member

My husband and I noticed that our daughter had a flat spot on her head

within a few months of life. Our pediatrican kept saying it would take care

of itself. She was finally at her 6 mos appt and we brought it up again and

with a second look they diagnosed her with torticollus. They didn't tell us

anything about a helmet etc and I had to do all the research about it. My

pediatrician said that in all the cases she has seen, the head takes care of

itself. I went for a second opinion and have a prescription to get a helmet

made. I have heard there are different kinds but don't know what kind this

is. Only that this is one of the only places to get one made around where we

live. We are upset that she wasn't diagnosed earlier and have since had

workups done through early intervention etc. I never realized how much

damage has been done to her with her ear moved forward and her bulge on her

forhead. I am interested in hearing the results other families have had

using a helmet and also those who have not. I am new at this and am just

trying to gather information and learn as much as I can to help my daughter!

Paige

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Guest guest

Welcome Leann-

I just looked at Nina's adorable pictures - I love the first one with

her little tongue sticking out, hehe. She looks like there's some

definite flatness - on her right, right? Has your pediatrician

suggested a helmet or band yet? See what Cranial Tech suggests. Are

her ears assymmetrical also? They kind of looked like they are in

the back view picture. Wishing you a Happy Easter.

Debbie Abby's mom 3/1/00 DOC 2/16/01

p.s. I love the name Nina - thought about it for Abby : )

-- In Plagiocephaly@y..., " LeAnn " <lkeim@s...> wrote:

> Hi everyone. My name is LeAnn and my 6 1/2 month old is Nina. I

> have been learning alot on the torticollis site, as she has been

> going to pt since 4 months of age for that. I unfortunately didn't

> find all of you until a few weeks ago and although her head

> shape is much better, it is still mishapen. I have been looking at

> some of the head shapes in the files but still being new to this, I

> have a hard time picking up the details and knowing what I'm

> looking for. I have posted Nina's pics in the files section and was

> wondering if some of you would look at them and give me some

> feedback? I have sent some of these to Cranial Tech for an

> evaluation and hope to hear something tomorrow from them.

> Thanks for your help!

>

> LeAnn & Nina

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Guest guest

Paige,

As you will hear from a lot of people in this group, the doctors told us that

's head would round out on its own. We now have her in a DOC Band - she

started when she was 12 months old - she is now 14 months and we see a very

big change. Her ears are almost aligned and now that her forehead is

" normal " her eye has opened and her face is symmetrical. Where do you live?

We are in the " Metro DC " area (Northern VA). We first went to Children's

Hospital when was 6 months old, and they told us it would round out on

its own. 5 months later we got a second opinion when her head was still

flat. (BTW - she does not have Tort.)

Good luck to you and if you want to, please feel free to e-mail me directly.

-- --

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Guest guest

She looks like there's some definite flatness - on her right,

right? - yes - tort on the left, flat on the right

Has your pediatrician suggested a helmet or band yet?

- no. ped has said nothing but he did refer us to PT and to

neurologist; PT keeps thinking she won't need one; neurologist

said keep doing what you're doing since it had been working. I

just don't want to wait too long. we have an MRI on the 26th and

see the neuro again that same day. see ped this tuesday

Are her ears assymmetrical also? - yes, you can see it from the

front too.

LeAnn

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Guest guest

Can anyone tell me by looking at Nina's pictures if she has mild,

moderate, or severe plagio? No one has ever told me and I don't

know how it's measured. (I'm pretty sure it is not severe as she

is much better than she was)

LeAnn

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LeAnn

Under Bookmarks there is a link

http://www.neurosurgery.org/journals/online_j/feb97/2-2-3.html it explains

how to measure and what is mild, moderate and severe. To me she looks

moderate, but I am no doctor. My son's neurosurgeon and physical therapist

measures . was really severe, 12 mm or greater is considered

severe and was 18 mm. Good luck

Cherie - 's Mom

-----Original Message-----

From: LeAnn [mailto:lkeim@...]

Sent: Sunday, April 15, 2001 9:05 PM

Plagiocephaly

Subject: Re: New member

Can anyone tell me by looking at Nina's pictures if she has mild,

moderate, or severe plagio? No one has ever told me and I don't

know how it's measured. (I'm pretty sure it is not severe as she

is much better than she was)

LeAnn

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Guest guest

Paige,

You are have done and are doing the right thing. It is great that you were so

conscientious to go and get a second opinion. That was the right thing to do.

Also, you are getting started at the right time. 6 months is really a prime

time to begin. You should see good results. We had our daughter in a locally

made helmet - she got started at 9 months since we could not convince our ped

that something was wrong until she was 7 months. Then we had to wait to see

the specialist and wait to see the orthotist!!!!! Our ped also told us that

it woud correct itself - wrong!!!

We had in her helmet from the time she was 9 months until about 15

months. We had good luck with our helmet, but our orthotist is the one who

made the difference. A good orthotist will make any of the products out there

work for you. Would you be willing to share where you live? We have almost

700 members here. It is possible that some of our members live near you or

are using the same ortho that you will be using. That was my experience. I

live in Oklahoma and was lucky enough to run across a member here who used my

ortho and the same product we used and filled me before we got started!!

Are you also getting PT for the tort? Correcting that will definately help

with the plagio.

Welcome to the group - I hope you will stick with us. I think you will find

this group to be an awesome source of support, encouragement and answers!!!

Please keep us posted!

Marci (Mom to - helmet grad)

Oklahoma

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Guest guest

LeAnn,

Welcome to the group and I will go and check out Nina's files sometime today.

Just wanted to say welcome and I'm glad that you found us! If Nina does have

plagio you can rest easy that you are not too late to seek treatment.

I'll let you know what I think after I have had a chance to take a look!!

Marci (Mom to - helmet grad)

Oklahoma

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LeAnn

I just looked at Nina's pictures and she is SOOOOO cute!!!!! Her flattening

looks mild to moderate to me. Not severe for sure. It does look like she has

plagio, in fact, her head looks very similar to my daughter's. She also had

plagio on the right and tort on the left.

Did you say you are going to see the neuro or that you already have? If you

feel like you would be interested in treatment I would start really pushing

now for getting the helmet or band since she is at such an optimal age! Also,

it takes awhile to get through the entire procedure.

You ultimately have to make the decision. We decided to go for it immediately

when the neuro diagnosed plagio since he accompanied his diagnosis with a

HUGE list of possible side effects that could occur is left untreated. (He

kind of used a scare tactic with us in my opionion!!) Still, I do not regret

having gotten treatment and if I were faced with the same situation again I

would do it again!

Please keep us posted!

Marci (Mom to - helmet grad)

Oklahoma

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Guest guest

Welcome LeAnn,

Glad that you found us. Nina is such a cutie. That is wonderful that

repositioning her is working. Let us know what CT says.

April Mommy to Bri and Mandy

> Hi everyone. My name is LeAnn and my 6 1/2 month old is Nina. I

> have been learning alot on the torticollis site, as she has been

> going to pt since 4 months of age for that. I unfortunately didn't

> find all of you until a few weeks ago and although her head

> shape is much better, it is still mishapen. I have been looking at

> some of the head shapes in the files but still being new to this, I

> have a hard time picking up the details and knowing what I'm

> looking for. I have posted Nina's pics in the files section and was

> wondering if some of you would look at them and give me some

> feedback? I have sent some of these to Cranial Tech for an

> evaluation and hope to hear something tomorrow from them.

> Thanks for your help!

>

> LeAnn & Nina

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Guest guest

LeAnn,

Your MRI will show if the sutures are closed or open. If they are open you

have plagio, if they are closed you might be looking at cranio. Your

specialist will be able to tell you for sure after the MRI results are in.

Marci (Mom to )

Oklahoma

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Guest guest

Welcome to the group!

I must say that Nina is so absolutely adorable!!!!

She does seem to have some flattening on the back right side of her

head. You can see that in the top view you posted. It doesn't look

very severe, but I think you should speak to your pediatrician about

getting an opinion from a trained professional so that you can ease

your own mind about this.

Good luck to you and keep us posted.

Stasia

> Hi everyone. My name is LeAnn and my 6 1/2 month old is Nina. I

> have been learning alot on the torticollis site, as she has been

> going to pt since 4 months of age for that. I unfortunately didn't

> find all of you until a few weeks ago and although her head

> shape is much better, it is still mishapen. I have been looking at

> some of the head shapes in the files but still being new to this, I

> have a hard time picking up the details and knowing what I'm

> looking for. I have posted Nina's pics in the files section and was

> wondering if some of you would look at them and give me some

> feedback? I have sent some of these to Cranial Tech for an

> evaluation and hope to hear something tomorrow from them.

> Thanks for your help!

>

> LeAnn & Nina

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  • 2 months later...
Guest guest

,

Hello my name is Jill Ramos and I also have a 6 1/2 month old son named Gavin! Although Gavin does have biparetal plagiocephaly it is his twin Tommy who is in the DOC band. It didn't occur to me to wonder about Tommy's flat spot until my mother-in-law pointed out that it wasn't normal (embarrassing, isn't it?). From everything I have researched into this condition, DOC vs. STAR bands, it seems to me (and this is OPINION only) that it is the same as brand vs. generic, and that the orthotist is the one who really makes the difference. I have a friend on this site who has twins in the STAR band, and as far as I know she is satisfied with the treatment.

Don't feel guilty about not knowing what to look for...a lot of mommies on this site didn't get treatment for their little angels until 10 months and beyond, and still got results!

Good luck and let us know how it goes!

Jill Ramos

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When Gavin is on his back his neck is flat to the floor. It would seem to me that the lack of the arch and resulting positioning of the head could cause spinal problems.

Hi ! Welcome to the group!

Just to give you a little comfort, I have never heard of plagio causing spinal problems. There is, however, a condition called torticollis that affects the muscles in the neck. Many babies who have tort. end up with plagio as a result. Does Gavin have any trouble turning his head in one direction, or lack range of motion? If so, he would probably benefit from some physical therapy. There is also a group called torticolliskids if you would like to learn more about it.

WE are thinking of cancelling the Tuesday Appt. and looking into the DOC band and trying to get in to see a chiropractor.

If it were me, I would keep you appt. AND consult with Cranial Technologies about the DOC Band as well. Both products can work wonders, but it is really in the hands of the orthotist/clinician that you work with. I would interview both parties and ask MANY questions. If you would like some help with question ideas, visit www.plagiocephaly.org/support/questions.htm . After you have talked with both providers, you will be able to make a decision that is best for your baby and his situation.

However, with Gavin being nearly 7 mo. we want to start SOON and are thinking of forgoing the whole insurance hassle and paying out-of-pocket.

You're right in that you should get started ASAP, but don't give up on insurance. Whomever you decide to go with will likely have to do some paper work with insurance before the casting is done, but if you are firm with them that you want an answer (yesterday! :o), they may be willing to put a push on it. Getting an approval/denial shouldn't take much longer than a week, if not less, and as soon as you have an answer one way or the other, you can get started. If you are denied, you will have to pay out of pocket to get started, but you can appeal your insurance's decision (see the FILES for lots of help!).

If you have anymore questions, there are so many helpful members in the group. Post any time, and join us for chat on Tues. nite. Glad you found us!! :o)

Kendra in CanadaFor more plagio info, go towww.plagiocephaly.org/support...

----- Original Message -----

From: glandtcj@...

Plagiocephaly

Sent: Saturday, June 23, 2001 10:31 AM

Subject: new member

Hi,My name is . My son Gavin is 6 1/2 mo. and we just this week found out about plagio. We expressed concern about the left side of his head being flat and angled and through the 2 and 4 mo. appts. were told it would straighten out. Recently my sister who just started working at USA Baby memtioned that she has seen several customers' babies wearing helmets. So last week at his 6 mo appt I asked the doctor and he didn't know much or even give it a name but said that he'd had one patient who had used it and was pleased with the result. He had his nurse give me the name of the rehab place to call. I finally got on Internet, started typing things like flat head and skull abnormalitiies and lo and behold there is an actual name for the condition and it really can cause problems. Now I feel guilty that I didn't question it more sooner. We have an appt for Tuesday with a rehab center that goes through STARBand. Now getting on this site this morning and reading a few postings I'm having second thoughts. Have many people been pleased with the STARBand or have many run into problems? It seems that no one has had problems with DOC bands, is that true? Also, a new thought came to my husband and me this morning. When Gavin is on his back his neck is flat to the floor. It would seem to me that the lack of the arch and resulting positioning of the head could cause spinal problems. Has anyone on the list addressed this before? WE are thinking of cancelling the Tuesday Appt. and looking into the DOC band and trying to get in to see a chiropractor. If our thoughts are correct a chiropractor could provide convincing evidence to the insurance company. However, with Gavin being nearly 7 mo. we want to start SOON and are thinking of forgoing the whole insurance hassle and paying out-of-pocket. NOT that we're well-off mind you--we're both teachers--but we do have some savings and want to get going on this ASAP. I feel that we're against the clock in trying to get the best results. All input regarding STARBand vs. DOC and potential spinal problems is very, very welcome. Thanks--I'm so glad I found this group. Thank God for Internet! GlandtGrren Bay, WIFor more plagio info

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Guest guest

,

I'm sooo glad you found us and good for you for taking matters into your own

hands!! My daughter did not wear a band - she wore a helmet which is similar.

I can tell you that we have had good and bad stories about both the STARband

and the DOCband. We have come to the conclusion that the skill level,

professionalism and experience of the orthotist is what makes the difference.

If you have an excellent orthotist then you will have good luck with either

device. The key is to interview the orthotist first and find out what his/her

experience with the STARband is. If he/she has only made a few or if you are

uncomfortable with the feeling you get from him/her then you may want to look

into the DOCband. I agree that you are at a good age to get started, but you

don't want to wait too much longer. The treatment will go quicker and be more

complete the earlier you start.

As far as the insurance thing goes, I would definately file the claim. You

may have to pay upfront, but while you are making the payments you can be

going through the appeals process. And who knows, maybe your company will pay

without a fuss. It certainly never hurts to try and the insurance companies

have been under the gun lately for not allowing band treatment for plagio

babies.

OK, sorry this is so long! I hope it helps and please stick with us. I think

you will find this group to be a great source of advice, support and

friendship!

Marci (Mom to )

Oklahoma

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