New Member

[Guest guest]

Welcome to the group. we are all shocked and a bit depressed at first,

but it really isn't that bad. Usually starting as soon as possible is

best since the head grows faster the younger they are (thus less time

in a band). Is your daughter " sydner " or is it a typo? I just

wondered because mine is " sydney " . She wore a band from 5 mo to 10 mo,

but most babies are in the band for 3 or 4 mo.

Where do you live? Have you seen a specialist or band provider? Maybe

someone in your area can give specific advise. Also how old is your baby?

-christine

sydney 2.5 yrs starband grad

>

> i am so thankful i found this group! right now i am so confused what

> to do with my daughter. my husband and i are header toward the getting

> sydner a helmet. what is the best age to get it for her. does anyone

> wish they hadnt done it? please let me know what your thoughts are,

> emotionaly i caould use the asvice!!!

>

[Guest guest]

Hi Beata, I'm sorry to learn you're newly diagnosed but happy to hear things are

mild.  I was on azulfidine years ago and honestly can't recall the impact.  Keep

your skin controlled and the arthritis should follow.  Feel Good. 

[Guest guest]

thank you so much for your re. its nice to know other people have had

this sone and are happy about it. and yes it was a typo my daughter is

also Sydney. we are actualy going in one week for her casting, im very

nervous about that. we live in NB canada and around here i cant say

ive seen anyone with a helmet. how do you deal with everyone who

stares or maked a remark?

thanks again

amy

[Guest guest]

Welcome Kylie! I'm in CA too. I think you will find the support and

wisdom here very helpful. It is hard to know whether to pursue a dx

for a kid who seems more mildly afflicted or borderline. You

certainly have your hands full with her medical issue already. Good

luck with that appt.

DS age 7 PDD-NOS

DD age 10 ADHD, borderline anxiety and depression

>

> Hi,  I'm new to the group and would like to introduce myself.

>

> My name is Kylie, my 13y.o. ds was diagnosed by a private neuropsych

in May with " aspects of NLD " , last week the school psych decided that

he fit the dx of AS. Merry Xmas indeed.

>

> He is fun, smart and very loving. He fortunately doesn't suffer

meltdowns and is ok with some changes. Which is good, as we have moved

internationally 3 times in his life and lived in 9 different houses

since his birth. He is not that difficult to live with and quite

honestly, if it weren't for all his difficulties with schoolwork, I

would never have suspected that anything was amiss.

>

> He simply cannot start or complete so much of his classwork and

homework, that he is failing in many subjects. In tests, he invariably

does very well.  All of his teachers say he is so intelligent and

knows so much, that they cannot understand why he is failing. His PE

teacher has phoned me on several occasions to complain that he is

" capable " , but refuses to participate, won't follow directions and is

rude/defiant to her. When I tried to point out that he has NLD and she

needs to be more understanding, she replied that her dd has ADHD and

she wasn't allowed to use that as an " excuse " .

>

> We had our second IEP meeting last week and so many changes have

been made that I am uncertain that any of it will work for him. I

suppose we will just have to wait and see.. With the AS dx, they seem

to be more on board and willing to implement more supportive strategies.

>

> On top of this,  my 17 y.o. dd MIGHT have MS. We have to wait to see

the drs at the UC clinic in mid January for a clear dx. Over the past

6 months of learning so much about ASD's, I am inclined to think that

she has some characteristics of AS too. I am in two minds as to

whether or not to have her tested for it.

>

> Fortunately, I have a wonderful husband and a solid partnership. We

feel that we are in a great place to get them the help that they need.

I looke forward to being a part of this group and gleaning as much

info and support as possible.

>

> Kylie in CA.

>

[Guest guest]

Christy:  if you've been going from doctor to doctor for the past five months,

it sounds as though you've gotten plenty of " other opionions " .  Be glad that you

were finally diagnosed (five months is actually pretty quick) and are about to

start on the standard first-line treatment for this disease.  There is a lot of

information available on PA on the web.  Please educate yourself as quickly as

possible so you know what to expect and what your options are in terms of

treatment.  Apparently you were not bad enough to be put on prednisone (which is

good); and MTX may do the job for you.  It has for many but requires regular

testing to assure that no damage is happening to your liver.  If MTX doesn't do

the job, you may be put on one of the biologics (Enbrel, Humira or Remicade),

which are quite expensive - and that's why insurance companies want you to try

MTX first. 

I, apparently, had just enough joint damage that the insurance company approved

my going directly to Enbrel rather than MTX and it has worked well for me.  Like

you, I was diagnosed within about six months but those six months were scary

because I'd gotten to the point where I could barely get up out of a chair or

walk up the stairs and I didn't know what was happening to me.  Enbrel worked

well for me. . . . but no matter what you take, don't expect overnight

miracles.  Each person reacts differently to PA drugs - some get relief right

away; others may take a month or two.  For me, the awful swelling I had in my

feet and legs literally started to go away the first day I took Enbrel but

the pain relief came so slowly that it was hard to detect on a day to day basis

until one day I woke up and realized I didn't hurt anymore. 

 

Good luck but keep asking questions and do your homework!  You will be glad you

did so you can become your own best advocate. 

 

Joanna Hoelscher

[Guest guest]

What makes you doubt the diagnosis? If you have psoriasis and one or

more fingers or toes that is swollen like a sausage, that is pretty

much a slam-dunk for a PA diagnosis. Even if you don't have the

sausage digit, joint pain along with psoriasis and a negative

rheumatoid factor is pretty much worthy of a clinical diagnosis. You

may have had an infection that triggered PA, but it would still be PA.

The main thing to think about in considering treatment with MTX is to

consider that even though MTX carries a risk of some side effects, so

does untreated PA carry some serious risks. If left untreated with

MTX or one of the biologicals, you are pretty much asking for

eventual irreversible damage to your joints. Not to mention having

your quality of life seriously compromised. And when you read the

side effects of MTX, realize that the most serious ones occur in

people who are taking HUGE doses of it for cancer treatment. We take

it in much, much lower doses. Also, the minor side effects like

nausea are easily mitigated by dividing the dose, taking Benadryl,

etc.

We all understand what a shock it is to be told you have an incurable

autoimmune disease - we've all been there. But please ask us as many

questions as you need to so that you can be well-informed. You will

find a lot of knowledge and experience here. You should read as many

of the back messages as you can - there's a ton of help and

encouragement. best regards, sherry z

<<I guess I am not sure about the diagnosis or the treatment.>>

[Guest guest]

Hi Christy,

I too was convinced my PA was from some kind of infection. My rheumatologist

wanted me on Humira, but I just didn't feel right about it yet. So I found a

an MD who does AP (antibiotic protocol) and interestingly enough he tested

me for Lyme disease and it's positive. So more antibiotics for awhile. I

don't know if it can turn this around for sure, but it's certainly worth a

shot! Anyway, if you still have doubts, I think it's always worth another

opinion.

--

Kim Kooyers

[Guest guest]

Sherry,

I guess you were answering me, Christy. It is hard to follow who's talking to

whom.

I loved the rheumatologist, so I guess I shouldn't doubt the diagnosis. My

problem is my lesions were biopsied and called spongiotic dermatitis, not

psoriasis.

I guess I will have to bring-up my questions with the doctor when I see him next

week.

Thanks for all the help,

Christy

[Guest guest]

,

According to recent postings the anaesthetics that dentists use should

not contain any narcotics, so you should be fine. However, to be safe I

would just skip using LDN the night before you visit the dentist -

that's what I always do.

Onifer wrote:

> hi to all

> chronic progressive m/s since 1990

> age 50 swim workout daily w/ assistance from friends other ymca

> members started 3mg ldn this past sat

> developed toothache what do i tell my dentist any other advise words

> of wisdom

> appreciated

> thanks

> J. Onifer, III

[Guest guest]

Hi Janelle,

Welcome to our group, I am glad you found us.

It surely sounds like you are having health issues that are consistent

with what we've experienced on our group. The insomnia, heart

palpitations, and fatigue are classic signs...no doubt.

We've also had women with some indications of asthma cropping up, and

other respiratory issues, as well as the problems with the spine.

Sadly some of these women with spine issues have had surgery even,

which did not solve their issues. It's because the root cause goes

much deeper.

We don't know all the biology and science behind the reason for the

bone destruction, but we do know it exists. There are sufficient

studies to question the effects of silicone on bone...we've got them

posted in our files section. In cases of joint replacement, there is

evidence of bone destruction near the site of the silicone.

It is not a stretch to imagine the implants causing issues to any

organs in our torso and chest... Lungs, thyroid, ribs, spine, heart,

they're all there....and we've seen issues with all of those and more.

The next step would be to start researching implant removal. If you

have the funds set aside for implant complications, now is the time to

tap into those funds. I wish doctors would require that every woman

who gets implants has an emergency fund set aside for the day that she

will have to deal with them again. It will not be cheap, and most

women don't have that money. Hopefully you do.

It is vital that your implants be removed properly! That means that

you can't just go to any plastic surgeon, request explant and walk

away knowing it has been done with your health in mind. Most doctors

do not explant using en bloc or total capsulectomy with drains, but

that is what you must have. The goal with explant is to remove not

only the implants, but the scar capsule that surrounds each implant as

well. It is very important for your long term healing that this is done.

We have a list of plastic surgeons around the country, that has been

compiled over the years, who have done explants for our group members.

Some of these doctors we are not sure of at any given time, as they

may change their political stance on us (this is always a

controversial issue!), but there are a couple of doctors around the

country that we've been able to trust completely and rely on to do a

proper removal compassionately. These doctors are:

Dr. Lu Feng, Cleveland OHIO

Dr. Kolb, Atlanta, GA

Dr. Huang, Denver, CO

At times we have suggested Dr. Ed Melmed in Dallas, TX, but you must

be sure to request that he removes your capsules if you have saline

implants. He has not always done so. The women doctors listed above

are completely trustworthy to do a PROPER EXPLANT. We love these

women...they have done so much for so many women over the years. I

don't know where we'd be without their expertise and compassion for us

who are sick.

I know explant is a scary prospect, but we have compiled a list of

things to do to prepare for explant surgery. I can post this list.

It will make it easier if you can have the support of some fellow

explantees while you go through this period in your life.

Finally, in our archives are some letters from one woman that I can

think of in particular who had spinal problems from her implants. I

am not sure where she is today, but you can read some of her messages

by doing a search. I believe her name was e.

I hope this gives you a sense of optimism for your future.

We've seen many women successfully remove their implants and go on to

live a wonderful life, including getting their health back, getting

married, having babies, getting new careers. It can be done!

So have hope!

Take care and God bless,

Patty

>

>

> I'm Janelle... I had implants (saline) put in almost fifteen years ago.

> I have had some health problems for about 6 or 7 years. I have had 5

> MRI's and am told that I have two bulged discs, but I am also suffering

> from a few other problems. (i.e) insomina, heart palpatations, fatigue,

> asthma-

>

> I'm just not sure if my implants are to blame or what! I know my

> posture has been awful since my breast augmentation because of the

> weight and because I must be somewhat self conscience of them.

>

> What should my next step be?? Any help would be great!

>

> I did talk to one plastic surgeon about five years ago who told me

> nothing was wrong with my implants and my right neck pain was a separate

> issue.

>

> Thanks J

>

[Guest guest]

i didnt let stares bother me, ppl will stare at anything, just the way they are, not being rude, just curious usually

as for decorating, you can read and see what and how i did it at joeysmanicmelon.blogspot.com there are also tips in the groups files

welcome

On Wed, Jan 21, 2009 at 3:44 PM, kirsten.hany <kirsten.hany@...> wrote:

hello, my son had his doc band evaluation yesterday and will be fitted with his helmet in two weeks. This particular brand of helmet only comes in white and I was wanting to decorate it. Does anyone have any

ideas??? Also how do you deal with stares and negative attention in public?? Thanks, I am feeling very overwhellmed right now. -- -household executive, maid, chef (ok thats a stretch), taxi driver, domestic engineer or, best of all, just " mommy "

http://www.dailymail.co.uk/health/article-1088463/Why-time-forget-pushchair-sling-baby-sleep.htmlhttp://midscbwers.blogspot.com/

[Guest guest]

As far as decorating, I go to s or Hobby Lobby and get various

stickers (but not stiff stickers) and put them on it and then cover

over the entire helmet with modge podge. The modge podge helps the

stickers stay and it also makes the helmet shine a litte. You can

change designs anytime, just peel the modge podge off or use alcohol

and start over. I have done fire engines and trucks, animals, cute

sayings, fish, and elmo. I have not received any negative attention

with my son and his helmet. I've actually had atleast 3 other moms

come to me telling me their child needs one and asking questions and

probably atleast 4 others talk to me about their children who had the

helmets and how much they helped, but nothing negative. I have had a

few people ask me what happened to my son, but thats not really

negative, its just curiousity. I just explain plagiocephaly to them.

Good luck!

>

> hello, my son had his doc band evaluation yesterday and will be

fitted

> with his helmet in two weeks. This particular brand of helmet only

> comes in white and I was wanting to decorate it. Does anyone have

any

> ideas??? Also how do you deal with stares and negative attention in

> public?? Thanks, I am feeling very overwhellmed right now.

>

[Guest guest]

My son just go his helmet on Monday and I was worried about the stares and stuff, but my first experience was great and they asked alot of questions but I was ok with it. Most people have no idea and are curious. I say tell them about plagio. People learn something new everyday and we can use it as a way to educate people about plagio.

mother of son,Justice 4 months old (starband since Monday January 19,2008)

From: kirsten.hany <kirsten.hany@...>Subject: new memberPlagiocephaly Date: Wednesday, January 21, 2009, 8:44 PM

hello, my son had his doc band evaluation yesterday and will be fitted with his helmet in two weeks. This particular brand of helmet only comes in white and I was wanting to decorate it. Does anyone have any ideas??? Also how do you deal with stares and negative attention in public?? Thanks, I am feeling very overwhellmed right now.

[Guest guest]

We always bought stickers at Micheals. I didn't use the modge-podge,

instead I used clear nail polish. I enjoyed changing his stickers

every three weeks or so. The clear nail polish held for us.

I hope this helps.

~

Mom to Noah

StarBand Grad

>

> hello, my son had his doc band evaluation yesterday and will be fitted

> with his helmet in two weeks. This particular brand of helmet only

> comes in white and I was wanting to decorate it. Does anyone have any

> ideas??? Also how do you deal with stares and negative attention in

> public?? Thanks, I am feeling very overwhellmed right now.

>

[Guest guest]

I took my sons helmet to a bike shop and they did an awesome airbrush job on his helmet. In case you dont feel like decorating it yourself this is always an option! As far as feeling uncomfortable about being in public.... I still feel uncomfortable. I wish I could say that I didnt care about the stares but some days it gets to me. And the plethora of odd questions I get too. Some days I am just not in the mood. Kids love to stare at his helmet much more than adults do though. And then its funny to hear the parent try to explain why he has a helmet on to their child! But one thing I have learned to love about the helmet is that it comes in so handy for babies that are trying to get around. He has fallen back and whacked his head so many times on the floor and has barely made a peep! I also feel like

he has added protection when I have him in the jogging stroller or in a shopping cart in case he falls out. One person even came up to me thinking I had the helmet on him just for shopping cart rides! So in a sense I will miss that security once the helmet goes but I still cant wait to get rid of it! 5 weeks, 4 days to go....- Cole in DOCband since 12/1/08From: kirsten.hany <kirsten.hany@...>Plagiocephaly Sent: Wednesday, January 21, 2009 1:44:38 PMSubject: new member

hello, my son had his doc band evaluation yesterday and will be fitted

with his helmet in two weeks. This particular brand of helmet only

comes in white and I was wanting to decorate it. Does anyone have any

ideas??? Also how do you deal with stares and negative attention in

public?? Thanks, I am feeling very overwhellmed right now.

[Guest guest]

Hi--

I just wanted to add that there are great decorating tips in the

files folder, I used that when I decorated my LO's helmet and the

decoration job lasted the whole ten weeks that my son was in the

band. I found my insperation for the design in the CT calendar, you

can find it on their website if you don't have one. In a nutshell I

painted three layers of acrylic paint (drying in between with a

blowdryer on low), followed by acrylic stickers that I ordered from

stickergiant.com, ending with three coats of modgepodge (also drying

between).

My thought on the stares and such is that you may have some hard days

and may have some fine days. The vast majority of people were

awesome. I had one day at the peds office that I dealt with a whole

room of staring people and it was tough...I put on my glare face and

stared them down in return. I found that it got easier, and much of

it had to do with how brave I was feeling that day. When I put on a

smile and a no care attitude, things would usually go better. But if

you come across that room of starers, remember that you are doing

what you need to for your child and because of that, you can keep

your head held high.

H.

> >

> > hello, my son had his doc band evaluation yesterday and will be

> fitted

> > with his helmet in two weeks. This particular brand of helmet

only

> > comes in white and I was wanting to decorate it. Does anyone

have

> any

> > ideas??? Also how do you deal with stares and negative attention

in

> > public?? Thanks, I am feeling very overwhellmed right now.

> >

>

[Guest guest]

,

I looked at you blog and love some of the things you did with the

helmet. I will be painting and decorating soon and have a couple

questions.

After you paint it and put on the mod podge to keep the stickers and

paint from peeling how long would that last you? and How did you

remove all of that to start over? Alcohol? Are you able to peel off

most them you use alcohol to get the rest?

Just trying to get a head start so we can do hers up as soon as it

come in.

le

Mom to

7.5 month 17mm plagio, tort almost resolved.

>

> > hello, my son had his doc band evaluation yesterday and will

be fitted

> > with his helmet in two weeks. This particular brand of helmet

only

> > comes in white and I was wanting to decorate it. Does anyone

have any

> > ideas??? Also how do you deal with stares and negative attention

in

> > public?? Thanks, I am feeling very overwhellmed right now.

> >

> >

> >

>

>

>

> --

> -household executive, maid, chef (ok thats a stretch), taxi

driver,

> domestic engineer or, best of all, just " mommy "

>

> http://www.dailymail.co.uk/health/article-1088463/Why-time-forget-

pushchair-sling-baby-sleep.html

> http://midscbwers.blogspot.com/

>

[Guest guest]

Kim Kooyers,

I have suspected Lyme or another tick-borne disease since this all started after

a tick bite, but 3 tests for Lyme have been negative and all other tests have

been negative too. I did take Doxycycline for 10 days and then for 28 days and

it helped both times but did

not completely cure me. My PA says that it helped because similar drugs are

used to treat PA even though they don't know why they work. I don't know where

to go to get any additional or better testing done.

What is antibiotic protocol?

Thanks for your help and for understanding my doubts.

Christy

[Guest guest]

kirsten.hany wrote:

> Also how do you deal with stares and negative attention in

> public?? Thanks, I am feeling very overwhellmed right now.

My bugs have been in their helmets for just about a month now and nobody

has said or done anything even slightly rude while we're out (and we're

out a lot.) I had a couple of people politely ask about the helmets, but

that doesn't bother me at all -- on the contrary, I think it's a good

thing for more people to be aware of plagio.

Other than the financial aspects of getting the helmets, it's been

pretty much a totally smooth, stressless experience for us. And

actually, as I've got one twin still practicing her sitting and the

other actively trying to walk, the helmets have been a real help in

avoiding head-bumps.

Good luck!

-Suzanne

twins in starband since 12/24

[Guest guest]

You just did Jo!!

Welcome!

-- In low dose naltrexone , " Jo Butitta "

<mjojob@...> wrote:

>

> I joined this group but am not allowed to post. Not sure what went

wrong. Can you help, please?

> Jo

>

[Guest guest]

it really depended on how much paint and mod podge I had. Too much mod podge or paint resulted in it peeling or kind of rolling up like along the edges/sideburns within a few days but not enough resulted in chips along the edges. It ended up that 2-3 light coats of paint and only 2 coats of mod podge worked best. The longest we kept a single one was 3 weeks and I touched up the sideburns once or twice. But we chose to not go longer as I liked to change it out. Yuo have to watch as the alcohol will eat away at the paint or mod podge so you dont want to get that on the outside of the helmet. Yes I peel it all right off, its easy, it all comes off, I could peel the whole thing off in 1 piece even, and then I clean it with alcohol.

On Wed, Jan 21, 2009 at 11:34 PM, danielle1col <danielle1col@...> wrote:

, I looked at you blog and love some of the things you did with the helmet. I will be painting and decorating soon and have a couple questions. After you paint it and put on the mod podge to keep the stickers and

paint from peeling how long would that last you? and How did you remove all of that to start over? Alcohol? Are you able to peel off most them you use alcohol to get the rest? Just trying to get a head start so we can do hers up as soon as it

come in. le Mom to 7.5 month 17mm plagio, tort almost resolved. > > > hello, my son had his doc band evaluation yesterday and will be fitted> > with his helmet in two weeks. This particular brand of helmet only> > comes in white and I was wanting to decorate it. Does anyone

have any> > ideas??? Also how do you deal with stares and negative attention in> > public?? Thanks, I am feeling very overwhellmed right now.> >> > > >> >

>

> -- > -household executive, maid, chef (ok thats a stretch), taxi driver,> domestic engineer or, best of all, just " mommy " > > http://www.dailymail.co.uk/health/article-1088463/Why-time-forget-

pushchair-sling-baby-sleep.html> http://midscbwers.blogspot.com/>

-- -household executive, maid, chef (ok thats a stretch), taxi driver, domestic engineer or, best of all, just " mommy "

http://www.dailymail.co.uk/health/article-1088463/Why-time-forget-pushchair-sling-baby-sleep.htmlhttp://midscbwers.blogspot.com/

[Guest guest]

Christy,

I know you are not a dog but you might want to check out the tick group for

dogs. They know a lot of information about tick diseases, where to get

treatment and what test need to be run to find what's going on. I never

realized there were so many strains of Lyme until my dog came down with it

himself and he needed treated.

The link is http://saluqi.home.netcom.com/ticklinks.htm You can sign up with

the top link on this page.

Celeste

[Guest guest]

I had Lyme that kept recurring for almost 5 years. I had the antibiotics for

over 10 times.

When I was ready to give up, I found my rheumy.  He asked if he could test for

diseases not in the area.  I told him to take as much blood as he wanted.  It

turned out to be babesiosis.* It came from the same tick as Lyme and had to be

treated with malaria medicine.    Ask to be tested for it. After my results, he

tested several others and found it.

Good Luck,

in NY

*

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

http://www.dpd.cdc.gov/dpdx/HTML/Babesiosis.htm

[Guest guest]

Hi Marissa,

My happy baby got a band a 5 mo and didn't mind at all. She is still a

happy kid at 3 yrs. She met all her milestones on time or early and

learned to walk while in her band before 10 mo old. If the flattening

is mild it might improve on its own, but there is no guarantee, and if

you wait too long you miss the chance to band. Banding before 1 year

is best since growth is fastest then. If you'r not sure about yourself

you can post some pictures here to get an idea about your son's head

shape.

-christine

sydney 3 yrs, starband grad

>

> I am a new mom and member to this group. My son Robbie is 7 months old

> and I noticed since birth that the back of his head is flatter than

> normal. I asked my pediatrician and he kept saying not to worry and

> that once he starts sitting up and rolling over at night it will fix

> itself. Well now that he is 7 months old and has been sitting up and

> rolling over since 5 months old I have only noticed a slight

> difference. I have heard stories that the helmet or band can change

> the baby's personality. Is this true? I have been waiting to call the

> Dr. my ped referred me to because I am not sure what to do. Is there

> anyone from Long Island on this message board that can point me in

> the right direction as far as who to go to. I would appreciate any

> help and response. Thank you, Marrisa

>

[Guest guest]

HI and Welcome!

For us it didn't change our dd's personality - on hot days she was a bit crankier - but she was a good baby.

I also nursed her and so when she got fussy would nurse her to soothe her. We started the band at 6 mo and ended at 12.

I didn't notice a change at all!

Jen and Luli - 3 years old

Left tort - Right Plagio - Hanger Band Grad - CA

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

New member

I am a new mom and member to this group. My son Robbie is 7 months old

and I noticed since birth that the back of his head is flatter than

normal. I asked my pediatrician and he kept saying not to worry and

that once he starts sitting up and rolling over at night it will fix

itself. Well now that he is 7 months old and has been sitting up and

rolling over since 5 months old I have only noticed a slight

difference. I have heard stories that the helmet or band can change

the baby's personality. Is this true? I have been waiting to call the

Dr. my ped referred me to because I am not sure what to do. Is there

anyone from Long Island on this message board that can point me in

the right direction as far as who to go to. I would appreciate any

help and response. Thank you, Marrisa

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