new to the group

June 22, 2007

Hello and welcome to the group.

My daughter wore a helmet (starband) last year, so I know exactly how

scary the process is at first. But honestly once you get the helmet it

gets so much easier. you won't need to worry how she sleeps and within

a few weeks you'll most likely start seeing results. My daughter has

always been a happy baby, and stayed that way during her entire

treatment.

Since her case sounds relatively minor it should be fairly quick. Good

luck with everything and feel free to ask any questions or just come

her to share. take care.

-christine

sydney 17 mo starband grad

>

> We just took our daughter is to the childrens hospital this week

> and was told she needed a helmet. We are very worried about this they

> tell us her case is mild but she also has abnormalities in her

> forehead and her one ear is set a little off. We are new to all this

> so we are trying to talk to others who have or are currently

> experiencing this. We would appreciate and input anyone can give us.

> She has been fit for the helmet and she will be getting it on July

> 2nd. is is a very heathly child otherwise and we are so grateful

> for that, Thank You

>

June 23, 2007

Welcome!

My daughter also had a mild/mod case and we banded too b/c of facial asymetries.Â Forehead bossing and ear offset are very common and a part of plagio.

How old is is?Â

You will find that this group is very helpful and supportive!!!

Â Jen and Luli - 18 mo.

Left Tort - Right Plagio - Hanger Band Grad - CA

tallulah jayne

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

new to the group

We just took our daughter is to the childrens hospital this week

and was told she needed a helmet. We are very worried about this they

tell us her case is mild but she also has abnormalities in her

forehead and her one ear is set a little off. We are new to all this

so we are trying to talk to others who have or are currently

experiencing this. We would appreciate and input anyone can give us.

She has been fit for the helmet and she will be getting it on July

2nd. is is a very heathly child otherwise and we are so grateful

for that, Thank You

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

June 23, 2007

>

> Welcome!

>

> My daughter also had a mild/mod case and we banded too b/c of

facial asymetries.Â Forehead bossing and ear offset are very common

and a part of plagio.

> How old is is?Â

>

> You will find that this group is very helpful and supportive!!!

>

> Â Jen and Luli - 18 mo.

> Left Tort - Right Plagio - Hanger Band Grad - CA

> tallulah jayne

> www.babiesonline.com/babies/j/jens5th/

>

> new to the group

>

> We just took our daughter is to the childrens hospital this

week

> and was told she needed a helmet. We are very worried about this

they

> tell us her case is mild but she also has abnormalities in her

> forehead and her one ear is set a little off. We are new to all

this

> so we are trying to talk to others who have or are currently

> experiencing this. We would appreciate and input anyone can give

us.

> She has been fit for the helmet and she will be getting it on July

> 2nd. is is a very heathly child otherwise and we are so

grateful

> for that, Thank You

>

_____________________________________________________________________

___

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

is is 5mo old. She is also going to Easter Seals for some

therapy . This is all very overwhelming.

June 25, 2007

Heidi Mendelsohn wrote:

>

> >I have Fibro as well as RA. I cannot take Morphine or most of tghe

> other pain meds as it causes vomiting.

>

I take Aciphex for my stomach and keep Phenergan around for nausea.

Once I got used to the morphine, it didn't make me sick anymore. The

methadone, no way will I ever try to take that again. My gastro doc

said all opiates are hard on your stomach.

Nina

July 5, 2007

Hello and welcome to the group,

cranial tech has a very good reputation, although some parents feel

the consultation is a bit of a sales pitch. I don't think they

recommend bands that aren't needed. however you might want a second

opinion from a specialist such as a cranial facial plastic surgeon

(that is who prescribed our band). you need a prescription to get a

band in any case.

I wonder why did you go for the consult if you don't think your child

has plagio? there are lots of photos in the photo section of kids with

plagio to compare with. Also if you post pics of your childs head you

can get some opinions here. The top view usually shows it the most,

but it depends on your child's head shape. How old is your child?

under 6 mo can often be corrected by repositioning your child (see

files/repo tips). if the plagio is mild-moderate and there is no neck

involvement repo can be very effective. children who do have tort, or

are older than 6 mo are generally difficult to reposition.

my daughter had severe brachy (flat in back) but I didn't realize how

bad it was until we saw a specialist. we got a starband and had great

results.

take care. -christine

sydney 18 mo starband grad

>

> hi! has anyone dealt with the Cranial Tech people in charlotte, nc or

> anywhere else? i need positive or negative feedback, please! my husband

> and i went to our " free " visit and they suggested our son get a doc

> band. i really don't think he has plagiocephaly and i'm worried that

> they're just " saying " he needs a doc band. do they tell everyone they

> need a doc band??? help???

>

July 5, 2007

CT Charlotte is where we went for our consult too and we are just looking over the measurements now wondering how he can have such a difference and the neuro say he doesnt need a band, it is mind boggling. We have only been for our consult there so cannot say from first hand experience on them but I know someone who is on their 4th band there, someone else who graduated after 2 and a 3rd that had 1 from there plus I have talked to at least 2 others from the group that had theirs done there and I have never heard anything negative. The one whose child had 2 even works in the medical field and they were extremely satisfied with Charlotte CT.

I originally thought the same thing, of course they are going to say he needs one. But like the major expenditure with minimal insurance coverage I compared to orthodontia. We went in for consults at 4 different orthodontists before we started my dds braces. One didnt think she needed anything yet (which would mean she would be going in every 6 mo for FREE consults until they decide to drain our $$ lol), 1 wanted to pull 2 teeth, and 2 wanted her to be in braces right away. Yes, they standed to make a couple grand on her teeth (she needed 2 sets of braces, face gear and a frenulunectomy) but not every one was saying to treat her nor were they saying to treat her in the same manner despite being able to make $$ from her. In the end we had to go to several and decide which ones we considered to be the " experts " . I was just as paranoid about psychiatrists too and low and behold when we finally got desperate enough to take my dd they didnt rush to do regular visits and meds either. I guess I shouldnt be so cynical b/c the overdiagnosis professionals are probably in the minority.

Basically once I remembered that CT is a medical group, covered by many insurances with certified therapists, that I realised they dont need to tell ppl who dont need a band that they do. But I am guessing that they do say they need a band to the majority of ppl who come in b/c if they didnt need a band a parent wouldnt see any reason to bring them in.

On 7/5/07, hannah <hannahbudic@...> wrote:

hi! has anyone dealt with the Cranial Tech people in charlotte, nc or anywhere else? i need positive or negative feedback, please! my husband and i went to our " free " visit and they suggested our son get a doc band. i really don't think he has plagiocephaly and i'm worried that they're just " saying " he needs a doc band. do they tell everyone they need a doc band??? help???

-- -SAHmommy and leader to;

-rising G & T 6th grader, Jr GS, soccer, cello-rising 2nd grader, Brownie; ADHD w/ anxiety-cosleeping, baby signing, loving to learn always with 2 yr old flairph-cosleeping, babywearing, breastfeeding, all over the place already; mild plagiocephaly/facial assymetry, repositioning until 8/4

" you may never see that stranger again but you'll have the same kids for the rest of your life, so who should you care about impressing? "

July 6, 2007

Hi,

We dealt with CT in Phoenix, AZ. They were awesome! May I ask, why

did you take your son for a consult if you don't believe he has

plagio? When I went to CT at 3 mos. and 6.5 mos (both times they said

he'd benefit from the band...our choice and ped.s to wait till 6.5) I

went because I didn't like my son's head shape and knew he needed

something. CT does make money from the bands but I don't think they

tell everyone to band. I think they only tell people that they

believe will benefit (ie. they have a mis-shappened ahead beyond what

is considered normal). Good luck in your decision.

LIsa

>

> hi! has anyone dealt with the Cranial Tech people in charlotte, nc

or

> anywhere else? i need positive or negative feedback, please! my

husband

> and i went to our " free " visit and they suggested our son get a doc

> band. i really don't think he has plagiocephaly and i'm worried that

> they're just " saying " he needs a doc band. do they tell everyone

they

> need a doc band??? help???

>

August 2, 2007

Hi Everyone,

My name is Peggy, from ohio..I am a single parent three lovely

children..Ages are 15boy, 7girl, 5boy.. Oldest has adhd and

bipolar,daughter no signs yet but symptons of adhd,youngest has adhd

agression issues,developemental delays,bone and muscle probs,and now

showing signs of juvenilne rheumatoid arthritis..

My youngest is going to be referred to a pediatric arthritis dr to

see what is going on with him..That means further trips to the main

childrens hospital in cincinnati,ohio..I am on the go as it is with

his therapies and oldest sons appts..I thought I would check this

group out and get some insight on juvenile rheumatoid arthritis..Hope

to hear from everyone..

Have a Happy Thursday!!!!

Peggy

August 2, 2007

Good morning Peggy;

Here is an angle that you should check out.My dodtor is the best

AP doc in Ontario and treats many children that have both rheumatoid

diseases and ADHD.She has found that children with ADHD are likely to be

Celiac and therefore have many food sensitivities.She often gets them

cured without having to resort to antibiotics.Read www.celiac.com

and then order the test that you want at www.enterolab.com They mail

you a kit,you send in s stool sample and they e-mail the results.If they

have Celiac(wich is usually inherited) they will likely have issues with

other foods because of the damage done by gluten.You have to start

cooking from scratch and never,never used anything already prepared or

from a package because of hidden gluten and food colourings,not to

mention chemical preservatives and flavour enhancers.Hope this helps.

Lynne G./SD

peggy zinn wrote:

> Hi Everyone,

> My name is Peggy, from ohio..I am a single parent three lovely

> children..Ages are 15boy, 7girl, 5boy.. Oldest has adhd and

> bipolar,daughter no signs yet but symptons of adhd,youngest has adhd

> agression issues,developemental delays,bone and muscle probs,and now

> showing signs of juvenilne rheumatoid arthritis..

> My youngest is going to be referred to a pediatric arthritis dr to

> see what is going on with him..That means further trips to the main

> childrens hospital in cincinnati,ohio..I am on the go as it is with

> his therapies and oldest sons appts..I thought I would check this

> group out and get some insight on juvenile rheumatoid arthritis..Hope

> to hear from everyone..

> Have a Happy Thursday!!!!

>

> Peggy

>

August 2, 2007

>Hi Everyone,

>My name is Peggy, from ohio..I am a single parent three lovely

>children..Ages are 15boy, 7girl, 5boy.. Oldest has adhd and

>bipolar,daughter no signs yet but symptons of adhd,youngest has adhd

>agression issues,developemental delays,bone and muscle probs,and now

>showing signs of juvenilne rheumatoid arthritis..

Why not consider going to a scientifically-oriented ND (naturalpath)

in addition to the regular doctors? The naturalpathic drs. may be

able to do further diagnostic work.

--

Esther Warkov, Ph.D

Member OMTA, SMTA

Founder, The Piano Connection

www.thepianoconnection.com

971.255-0388 (Portland)

pianos@...

esther_warkov@...

September 18, 2007

Diane,

I know from experience what caring for someone with dementia can do to you.

It is physically and mentally draining. Then add the RA on top of that..... I

hope you are able to take some time for yourself , get enough rest and just

have time to relax.

My thoughts are with you,

Dianne

************************************** See what's new at http://www.aol.com

September 18, 2007

>

> Hi Everyone,

> I am new to the group. I never even thought of looking for a

support

> group because I have been so involved in dealing with Mom and her

> Alzheimer's and being her caregiver that I haven't taken such great

> care of myself for the past 7 years. I was DX about 4 years ago.

I am

> now on Methotrexate and folic acid and also have Meloxicam and

> prednisone if I need it, but I really try not to take it...

> I have good days and bad days and some very bad days when I have a

> flare-up. But, I am always tired. I have blood work done and it

> checks out ok, they say. I could sleep all day. I just feel

> exhausted. I just can't believe that this can all be from having

RA.

> I know other people that say they have it and they don't seem to be

so

> tired...I am 57....by the way...

> Do you think it's the meds? Or just the disease?

> Any ideas would be appreciated...

> Thanks,

> Diane aka Carol

>

Hi i understand what you are going through. I took care of my husband

who suffered from cancer for two years and I did everything for him

the stress can cause the pain and tiredness to intenseify greatly You

have to take the time to rest even if only for 15 minutes here and

there. I felt exhausted all the time too! I hate taken medicine but I

have found out it is better to take it when needed than to not and

the symptoms get even worse and harder to control.

September 19, 2007

-Hi Diane,

Yes, I do get to rest. Not always by choice but just because i can't

move anymore....and i just sleep...After 7 years my Mom finally went

into a NH in May and that has made things a lot less stressful and

she is happier which is the best part.

I find it is a very frustrating disease and you don't get much

understanding from anyone...they just always say, oh, I have

arthritis too...and i don't get into explaining the difference

between having a little arthritis in a finger and having RA...

I am trying to take better care of myself...and eat better too...

Thanks for your response...

Carol aka Diane

-- In , Dianneis30@... wrote:

>

> Diane,

> I know from experience what caring for someone with dementia can do

to you.

> It is physically and mentally draining. Then add the RA on top of

that..... I

> hope you are able to take some time for yourself , get enough rest

and just

> have time to relax.

> My thoughts are with you,

> Dianne

>

> ************************************** See what's new at

http://www.aol.com

>

September 19, 2007

Sorry to hear about your husband. It is a very difficult thing to

take care of someone who is sick. I do get to rest because I have

to. Even when I go to the NH to visit Mom, I take a rest in her

bed. I would always do that at her house so she likes it and she

feels like she is taking care of me...It's an hours drive one way, so

after being there for 8 or 9 hours, it's a long ride home...and it

kills...but, I can't go every day, so when I go I like to make the

day of it....I am going on Wednesday for the day...I hope it's a good

day...when it's stressful, I notice my pain level goes up...it's

amazing what stress will do to our bodies...

Have a good night and thanks for writing....

Carol aka Diane

> >

> > Hi Everyone,

> > I am new to the group. I never even thought of looking for a

> support

> > group because I have been so involved in dealing with Mom and her

> > Alzheimer's and being her caregiver that I haven't taken such

great

> > care of myself for the past 7 years. I was DX about 4 years

ago.

> I am

> > now on Methotrexate and folic acid and also have Meloxicam and

> > prednisone if I need it, but I really try not to take it...

> > I have good days and bad days and some very bad days when I have

a

> > flare-up. But, I am always tired. I have blood work done and it

> > checks out ok, they say. I could sleep all day. I just feel

> > exhausted. I just can't believe that this can all be from having

> RA.

> > I know other people that say they have it and they don't seem to

be

> so

> > tired...I am 57....by the way...

> > Do you think it's the meds? Or just the disease?

> > Any ideas would be appreciated...

> > Thanks,

> > Diane aka Carol

> >

> Hi i understand what you are going through. I took care of my

husband

> who suffered from cancer for two years and I did everything for him

> the stress can cause the pain and tiredness to intenseify greatly

You

> have to take the time to rest even if only for 15 minutes here and

> there. I felt exhausted all the time too! I hate taken medicine but

I

> have found out it is better to take it when needed than to not and

> the symptoms get even worse and harder to control.

>

September 19, 2007

Welcome to the group. I was 24 when I was diagnosed w/ RA. Beleive

me, I feel drained all the time. I used to take ephedra until they

banned it to help me get through the day. It takes so much out of

me to take a shower. Granted, I have my good days and my bad days.

The funny thing w/ me is that my RA factor is always positive, but

my SED rate has been normal. I was taking Remicaide which worked

wonders. Just make sure that your rheumatologist does your labs

every few months. I know it's hard to hang in there when you hurt.

> > >

> > > Hi Everyone,

> > > I am new to the group. I never even thought of looking for a

> > support

> > > group because I have been so involved in dealing with Mom and

her

> > > Alzheimer's and being her caregiver that I haven't taken such

> great

> > > care of myself for the past 7 years. I was DX about 4 years

> ago.

> > I am

> > > now on Methotrexate and folic acid and also have Meloxicam and

> > > prednisone if I need it, but I really try not to take it...

> > > I have good days and bad days and some very bad days when I

have

> a

> > > flare-up. But, I am always tired. I have blood work done and

it

> > > checks out ok, they say. I could sleep all day. I just feel

> > > exhausted. I just can't believe that this can all be from

having

> > RA.

> > > I know other people that say they have it and they don't seem

to

> be

> > so

> > > tired...I am 57....by the way...

> > > Do you think it's the meds? Or just the disease?

> > > Any ideas would be appreciated...

> > > Thanks,

> > > Diane aka Carol

> > >

> > Hi i understand what you are going through. I took care of my

> husband

> > who suffered from cancer for two years and I did everything for

him

> > the stress can cause the pain and tiredness to intenseify

greatly

> You

> > have to take the time to rest even if only for 15 minutes here

and

> > there. I felt exhausted all the time too! I hate taken medicine

but

> I

> > have found out it is better to take it when needed than to not

and

> > the symptoms get even worse and harder to control.

> >

>

September 19, 2007

I was also on Remicaide for over a year I wasn't in any pain and I could do so

many things that I had been unable to do for many years it was wonderful but all

good things must come to an end atleast it seems that way for me. After I gave

up my job to take care of my husband I lost my medical coverage it was through

my work. My husband died april 07 and I decided to try school again I just

pray that this body will let me do what I need to do to survive. I hope over

time the humira works as well as the Remicaide does I am also taking celebrex I

have RA and osto as well I find that people don't want to hire you once they

hear you have RA of course they don't come right out and say it because it is

against the law to discrimiate against people with disabilities. I'd give

anything to be hole again