Debbie

[Guest guest]

Debbie,

I just received another call from Nick's new OT. She says they only treat

them up to 6 months...go figure! His previous OT said he could stay in the

helmet until he outgrows it. He still has alot of room!!!

Joanne

Re: how round is round enough?

> > > > > >

> > > > > >

> > > > > > I am in exactly the same boat as Matt and with

>

> > > > > (except she's going on 11 months old). We were just told at

> her

> > > > > fitting last night that she only has 6 weeks of room left in

> her

> > > > > band. That would bring the total wear time to just under 4.5

> > > months.

> > > > > We've seen drastic improvement in head shape, so-so

> improvement in

> > > > > ear alignment, and I don't think the facial asymmetry was ever

> > > that

> > > > > big of an issue for us.

> > > > > >

> > > > > > She was severe when it all started. Not sure what they

> think

> > > > > she is now, but we still have 6 weeks to go. We're still

> waiting

> > > for

> > > > > our United HealthCare to pay the bill. It was submitted to

> them in

> > > > > July! As with everyone on this list, we've had our share of

> stress

> > > > > and so has .

> > > > > >

> > > > > > So...do we press on for a more perfect head or do we

> let her

> > > > > be? I'm not so much worried about the cosmetic side anymore.

> The

> > > only

> > > > > thing I worry about is jaw/teeth/ear problems later. Have we

> done

> > > > > enough?

> > > > > >

> > > > > > I'm sure this is a dilemma we all face. When is it time

> to

> > > be

> > > > > done with it all? CT isn't going to tell us which way to go.

> Of

> > > > > course, that's our decision.

> > > > > >

> > > > > > Like Matt and , we're curious what you think

> about a

> > > > > second band.

> > > > > >

> > > > > > Kerri & baby (Chicago)

> > > > > >

> > > > > > For more plagio info, go to

> www.plagiocephaly.org/support

> > > > > >

[Guest guest]

Dustie

You can simply add it to her existing folder - that should be just

fine.....let me know when it's in there, I wanna check the cutie out!

Debbie

> Hi there, I'm sorry....It is always something with me. I have a

> picture of to post with her new DOCband. It is before the paint

> job. Can I put it in the file that she already has? do I have to

> post it another?

>

> Dustie

[Guest guest]

I had no idea you had to travel that far. 8 months ugh.......wow that a long haul but worth it.

Re: banded without full correction

Hi JoEllen:)I don't remember seeing a post from you before, so welcome to our group!How old is your son now? If you feel he could benefit from a 2nd band, then go for it! At Abby's graduation, she had been in bands for over 8 mos.. She was 15.5 mos of age when she was finished and we had been traveling 4 hrs one way bi-weekly. Her growth had slowed, so we decided not to get her into a 2nd DOCband. (Abby wore a STARband unsuccessfully with no improvement from 8-11 mos).I don't regret my decision not to 2nd DOCband her.Debbie Abby's mom DOCGradMI> > > Abby still has flatness today, but it's not noticeable to > strangers.> > > Debbie-> My son is getting his DOC band off next Tuesday. He still is a > little flat in back. Our pediatrician thinks a 2nd band is > ridiculous. Did you also only do one band? > > JoEllen, Max's Mom (DOC grad 11/17/02 - 1/21/03)For more plagio info

[Guest guest]

> Debbie,

> How is the little " peanut " (aka Abby)? Can you see any plagio that

is still evident? Is it just noticeable when her hair is wet? What

about if you pull it back in ponytail or pollyanna, etc?

>

Hi

The peanut is napping now - so she's great!! LOL, I'm potty training,

yeah lots & lots of fun I tell ya! LOL But she's fine. She turns 3

on March 1st already, hard to believe!

Ummm, oh, of course I still see her remaining flatness but it's

certainly nothing strangers would ever notice. And the funny thing

with Abby is, her flatness is more hidden when I have her hair pulled

up either in the " water spout " fashion, pig tails or whatever, just as

long as it's not completely down. This is cuz she of course has a

lovely cowlick right where her head is flat, so when she sleeps and

wakes up, it's all matted in that area. Of course just brushing the

little spirited terd's hair is a challenge enough, let alone styling

it but nothing a blue sucker won't fix!! LOL

How is Lucas doing? Please tell me he's improving, pretty please?!

Debbie Abby's mom 3/1/00 DOCGrad 6/22/01

MI

[Guest guest]

He said he wants it done to see if the sutures are still open.

Kelli

Re: Luke went to the Orthotist today (note for Christi incl.)

Hi Kelli:Why exactly does the orthotist want a CT scan done on Luke? I guessI'm a bit confused, are you considering getting him a 2nd helmet? He's seen correction right? It sounds as if he's doing pretty goodwith his helmet, esp given his older start in a local helmet.Debbie Abby's mom DOCGradMI> He wants Luke to have a scan to see if his sutures are still open.Iassume this is because of his age (14mos.).He wanted to know whatNeuro Luke was seeing & I told him none & how the first Neuro saidthat it would round out on it's own & how the 2nd Neuro said that at11mos. it was too late & Luke would never tolerate treatment(yah,right).So,I just went to the Ped & she wrote the script.> Anyhow,he wanted me to take Luke back to the first Neuro & see whathe thought but I just called & left a message for the Ped to call metomorrow.She can write a script for a scan too.> His head has grown another 1/2 cm. overall & the left anterior toright posterior had come out 1/2 cm. as well.> Christi~ whereabouts in MN are you? We made a trip up there weekendbefore last to pick up a snowmobile that my dh had purchased for me.Not a snowflake in sight up there but it was really cold & now thecold has followed us back to Indiana,it was -20 this morning (w/windchill)! I had never been up there before but it looks like reallypretty country.> Kelli & Luke (3.5 mos. in local helmet)> IndianaFor more plagio info

[Guest guest]

Debbie - is this some sort of Freudian slip? lol

Gail

Re: 3 weeks in...

Hi Bon

[Guest guest]

OH GAIL - ROFLMAO!!!!!!!

I caught that earlier & already personally emailed about it,

saying " hmm, just who was on my mind there huh? " LMAO - too funny you

caught that too - oh gosh I'm laughing SO hard here!!!!!!

Way too observant of you??? LMAO

Debbie

> Debbie - is this some sort of Freudian slip? lol

>

> Gail

> Re: 3 weeks in...

>

>

> Hi Bon

[Guest guest]

> Sooo glad you had a pleasant appt Trixie! It certainly sounds as

if

> this new orthotist has experience. It's nice he apologized to you

> for their errors, it takes a big person to apologize for errors

like

> that (I to this day have yet to receive any sort of apologies for

> Abby's bad band), that means a lot.

>

Debbie-

I know you hear this a lot, but I just wanted to say how you have

such a great attitude, particularly since you have never even

receieved an apology!

You can certainly take comfort in the fact that you have helped sooo

many in your crusade.

Your concerns were obviously heard as has told us how much

more advanced that particular place is in regards to plagio

treatment! You have helped so many more kids by voicing your

concern. Think of how many of those babies wouldn't have had the

opportunity to get treatment because of YOU!

The fact that this place turned around so much is a case in point to

the fact that education and experience is the key with these bands!

[Guest guest]

Debbie,

I second that! We are all so lucky that we have YOU as owner of this

great group!!

> > Sooo glad you had a pleasant appt Trixie! It certainly sounds as

> if

> > this new orthotist has experience. It's nice he apologized to

you

> > for their errors, it takes a big person to apologize for errors

> like

> > that (I to this day have yet to receive any sort of apologies for

> > Abby's bad band), that means a lot.

> >

>

> Debbie-

> I know you hear this a lot, but I just wanted to say how you have

> such a great attitude, particularly since you have never even

> receieved an apology!

> You can certainly take comfort in the fact that you have helped

sooo

> many in your crusade.

> Your concerns were obviously heard as has told us how

much

> more advanced that particular place is in regards to plagio

> treatment! You have helped so many more kids by voicing your

> concern. Think of how many of those babies wouldn't have had the

> opportunity to get treatment because of YOU!

> The fact that this place turned around so much is a case in point

to

> the fact that education and experience is the key with these bands!

>

[Guest guest]

--- In Plagiocephaly , " stripes6060 <taime@o...> "

<Think of how many of those babies wouldn't have had the

> > opportunity to get treatment because of YOU!

LMAO! That's not what I meant. It's the 3 hours of interrupted

sleep I got that is giving me an even bigger case of brain fart

today! And Dane continually slapping at the keyboard!

Those babies got treatment because of YOU!

I know sorry is a word I would want to hear. But, think how good

all those thank yous sound too!

Thanks Debbie Bon Jovi!

[Guest guest]

Jan, thank you for the support. Indeed, no one told me anything about the sleep study, so I only had what my husband had told me about his experience. So, I was a bit apprehensive. Just glad it was all over and things worked out.

Debby

[ ] Debbie

Debbie .... in my opinion if a patient overreacts and is scared its usually the fault of ill (sorry about the pun) explained procedures & what to expect. You didnt overreact so dont go worrying yourself about it. I could tell you a story where I did overreact, thru fear, pain & pure helplessness that even today I blush at the memory.

Love Jan

[Guest guest]

H Debbie:

I missed you, but I understand you have to take a break once in a

while. :0)

YES, YES, YES is finally getting used to the band she is

sleeping on it, and she is back to her happy self, no more rashes.

It's is so amazing how some babies can react to it. Thanks for asking

and I'm glad you are back.

and

--- In Plagiocephaly , " debbieandabby " <dj2kirby@c...>

wrote:

> Hey :

> I've been away the past couple days, how is doing in her band

> now? Happier? I hope so!

> Hope things are going better

> Debbie Abby's mom DOCGrad

> MI

[Guest guest]

YAY !

Shew - I'm so happy to hear she's finally adjusted - I can imagine

how stressed you were worrying she's never get used to it!

I was out of town for a couple days, back at it today - yuk! Thanks

for missing me

Debbie Abby's mom DOCGrad

MI

> > Hey :

> > I've been away the past couple days, how is doing in her

band

> > now? Happier? I hope so!

> > Hope things are going better

> > Debbie Abby's mom DOCGrad

> > MI

[Guest guest]

Hi Debbie! (I'm using Debbie rather than Deb to distinguish between you

and Deb in FL, if that's OK...)

For the years before I was diagnosed, I had lots of swelling and redness

in the joints of my hands, as well as pain in my knees, feet, ankles and

shoulders. I thought I was getting the flu every few weeks, but now I

know I was flaring. I didn't mention my symptoms to any MD, but I did

go see a naturopath once during that time. He put me on stuff for a

weak adrenal gland, but it didn't do much good. I guess because I

waited until my symptoms were so bad I could no longer function, I got a

diagnosis right away.

I have never been very healthy, and I didn't feel comfortable going to a

doctor for what seemed to me to be vague symptoms. I didn't realize

that the redness and swelling were RA symptoms. Looking back I feel

stupid. Sometimes it felt like my hands would blow up like balloons,

they would swell so badly. Of course, now my RA is treatment resistant.

They recently did blood work on my mom and she is RF positive, and

they're getting her in with a rheumy. My brother has symptoms of RA,

too, and he's going to make an appointment with a doctor. He wanted my

opinion, and I told him he's better off going now rather than doing

permanent joint damage and making it that much harder to get the RA

under control.

I hope your UCTD is controlled soon. It must be frustrating to have

such indecision on the part of your doctors as to what is going on. I

know how exciting it was when you were told it was Lyme disease, and

that there was a cure. It must have been terribly disappointing to go

through treatment and not get better. The Remicade was somewhat like

that for me. I thought it would be my " miracle " and it was for a short

period of time. Unfortunately it didn't work for long. With this

natural regimen, I'm not getting my hopes up. You're right about the

oil of oregano. He's using it with the idea that there is

bacteria/fungus in the intestine that is causing permeability. The

permeability causes food particles to penetrate through, and then your

immune system is activated thinking that they are " invaders " . This is

only a theory, and I think traditional medicine disavows it for the most

part. The idea is to kill off the bacteria, then replace it with good

bacteria using the probiotics. This heals the lining of the intestine,

and food particles no longer pass through. I'll keep you and the group

apprised as to how well all this works (or doesn't).

Love and hugs,

Carol

Re: [ ] Newbies / Update on natural med foray

Hi Carol,thanks for the bittersweet welcome back : ) I hope your new

naturalpathic therapy works for you. I've heard of the oil of oregano

from the Lymies, it's a natural antiboitic I think. So many people

swear by that approach, I hope you are one of the people it benefits. Do

you mind my asking what symptoms you had in the 3 years or so prior to

your diagnosis? Did you see primary care Drs or rheumies during that

time? thanks,Deb

Carol <carol@...> wrote:I just wanted to take a minute to

welcome all of our new members. It

seems like there are certain times of the year when our group grows by

leaps and bounds. Although we love to have you, we're saddened by what

brings you to us.

If you haven't already noticed, this is a great group of friends. The

support and friendship I've found here is just incredible, and has

really helped me to cope and adjust to life with RA. The information

our moderators (a and ) offer is invaluable. If you ever have a

question they'll lead you to the best info on the internet. And the

articles they forward to us keep us informed of the latest research.

My name is Carol and I live in Orlando, FL. I was diagnosed with RA

about 16 months ago, but I had symptoms for about 4 years prior to that.

I tried many natural means to treat my symptoms, but didn't have much

luck. I'm using MTX and Plaquenil as my DMARDS. I tried Remicade but

it stopped working after about 3 months, and I had some difficult side

effects. Everyone responds differently, though, so don't let my

experience color your opinion.

My most recent " thing " is that I just got back yesterday from a week

with a homeopathic / naturopathic / acupuncturist. It sounds very " new

age " , but he's actually a conservative Texan in Amarillo. I'm on a

remedies to help detoxify, to help with leaky gut, and to desensitize my

immune system from bacteria and fungus. The detox and immune stuff is

homeopathic, and the leaky gut stuff is oil of oregano one day, and a

grape seed extract and grapefruit seed extract in a capsule the other.

I take probiotics with the leaky gut stuff daily. Right now I feel just

awful, but I was told to expect that in the beginning. The timing is

pretty crummy, since I just got home late last night and I wanted to try

to do something for my husband for Easter. It looks like we might end

up with Boston Market frozen turkey medallions with mashed potatoes,

LOL! I tried to make reservations at our local country club for Easter

brunch last week, but they were long booked solid. Does anyone have any

ideas where we could eat on Easter day? I know only is local to

Orlando, but maybe someone knows of a chain restaurant that would be

open. I'd appreciate any advice immensely!!!

Oh, I'm also cutting out dairy, beef and refined sugar completely from

my diet. I'm supposed to be aware of surges in insulin, as he believes

the sugar and the insulin surges increase inflammation. He also said

that excess animal protein will cause inflammation, but not to avoid

animal protein completely (just beef). At least I'll lose that 20 lbs

I've been trying to get rid of!

Well, my love to all and wishes for a Happy Easter! (Or a Happy

Passover to anyone who celebrates it.)

Love and hugs,

Carol

Carol

[Guest guest]

ha ha ha!

Rhiannon

>From: " dustiejo2002 " <djones@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Debbie

>Date: Wed, 21 May 2003 18:37:55 -0000

>

> > LOL, I'm sure EVERYONE in the Dallas area knows Dustie!!

>

>

>

>Girl, as much rukus as I stirred up around here during 's Banded

>days, I bet allot of ppl do know me! lmao Just yesterday I made DH

>call Aetna regarding some new cards. He said, " why are you wanting

>me to call them, you always deal with this kind of stuff? " I

>said, " because they don't know you and the second to last time I

>called them, they hung up on me and NOTED IT! " He said, " oh yeah,

>that's right, mean ass! " And began to chuckle! Ok, now who is the

>butt here? me or him? lol What a reputation I must have!

>

>Dustie, Dallas Diva! lmao

>

_________________________________________________________________

Protect your PC - get McAfee.com VirusScan Online

http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

Debbie,

Poor Dustie (who is wondeful as well!!!!) won't even be able to read

all of these posts when she returns from the long weekend

Kerri

> As always, good post Debbie - I assumed Mari meant the bone seemed

to

> be bumping out, as 's did a bit when her noggin first

started

> rounding (you know, how they sort of look a little lumpy)... I

> wouldn't have thought of this possibility. Even if Dustie has

> abandoned you as her hero, you still have others who think you are!

> LOL!

> Kerri

> 's Mom

[Guest guest]

In a message dated 7/31/03 9:41:20 AM Pacific Daylight Time,

dayton@... writes:

<< What If he does just work on paperwork. Did they both say the same

thing?? >>

Well, yes, they did. However, I wondered if it wasn't some approach to

force the kids to talk. If so, he doesn't realize how long they can hold out.

There is so much more to why they are there which I cannot share, but they

really need to sort through some things.

Debbie in NC

[Guest guest]

Debbie- I just love the robe - thanks for sharing the pic with us!

Kerri

's mom

--- In Plagiocephaly , " Reck " <reckjb@g...>

wrote:

> Debbie, that is the cutest pic ever! I just love her little robe,

so precious! Definitely not surprised she was chosen, thanks for

sharing. Great idea !

>

> Jen- TX

> Trentyn- 17 mo. DocBand 06/12/03 & 09/17/03

> re: Debbie -- H.

>

>

> Hi :

> Thanks for asking to see Abby's Calendar picture I scanned

it for you, I'm attaching it to this post, but I don't think you're

on email, so I've added it to her photo album " Abby-Debbie " . She was

in January 2002.

> Debbie

> p.s..happy halloween everyone

>

>

>

>

>

>

>

>

[Guest guest]

Debbie first off may god bless you your family 2legged and 4 legged,now

i am going through same exact thing as you, they had to take me off tx.

found out i had parkinsons age 46. dont you dare give up you have them

two little ones future in the palm of your hand what a gift and a

honor.every day brings a new ray of light if you are open to receive

them ,they are on the verge of a kinder quicker solution have faith ,if

you go to church ask the whole church to pray for you the power of

prayer is powerful,I will pray for you and everybody on this site should

also, peace be with you.KICK THAT DRGONS ASS

[Guest guest]

Hi Biggrick! I didn't know we were the same age. How have you been doing? Didn't know you had Parkinson's--be well--Blessings, Satya

[ ] Re:DEBBIE

Debbie first off may god bless you your family 2legged and 4 legged,nowi am going through same exact thing as you, they had to take me off tx.found out i had parkinsons age 46. dont you dare give up you have themtwo little ones future in the palm of your hand what a gift and ahonor.every day brings a new ray of light if you are open to receivethem ,they are on the verge of a kinder quicker solution have faith ,ifyou go to church ask the whole church to pray for you the power ofprayer is powerful,I will pray for you and everybody on this site shouldalso, peace be with you.KICK THAT DRGONS ASS

[Guest guest]

Thanks so much Kathy am gonna get that started and set up..... Debbie

Debbie

[Guest guest]

Debbie,

I'm really bummed about the get together, but relieved that Rhonda

felt the same way I did about cancelling - we'll probably have at

least a foot of snow by the time this is over... We got home LATE

last night - once we landed in Newark, they couldn't find a gate for

our plane b/c so many of the departing ones weren't leaving. We were

on the plane for another hour or so after we landed The girls

behaved really well on the plane though, so that helped. The weather

in Aruba was terrible (well, for Aruba) - it was warm (maybe 75-80),

but rained 5 of 7 days (all day, not just a sprinkle). We sat on the

beach in the rain and made sand castles LOL. It was still a nice

family vacation, though... Now off to the snow and shoveling --

well, for dh anyway

Kerri (in NY)

's mom

> > Due to the snowstorm, the NY/NJ get together that was scheduled

for

> > tomorrow will be cancelled, we'll be rescheduling as soon as

> possible

> > (probably January/February and hoping for no snow). SORRY for

the

> > last minute notice - we were looking forward to meeting everyone

> > Kerri and Rhonda

> > and Collin's mommies

[Guest guest]

LOL! sheila

Debbi Heiser <heiser@...> wrote:> what 20 year old do you know that walks

around with seaweed in her purse

Well, I've heard of 20yo's with WEED in their purse, but not SEAweed! LOL

Man, I gotta get to bed....I'm pretty loopy tonight!

Deb

[Guest guest]

LOL when my daughter and I were in Hawaii, they had packages of nori (seaweed)

at the breakfast buffet. My daughter is really interested in anime and Japanese

culture, and she loves sushi and nori. She grabbed packages of the nori and had

it in her purse, and was nibbling on it all day most of the time.

Kemal Kalajdzic <kemalandsheila@...> wrote:LOL! sheila

Debbi Heiser <heiser@...> wrote:> what 20 year old do you know that walks

around with seaweed in her purse

Well, I've heard of 20yo's with WEED in their purse, but not SEAweed! LOL

Man, I gotta get to bed....I'm pretty loopy tonight!

Deb

[Guest guest]

Good luck- I hope it all works out for cute Jaden!

>From: "Amy in MN" <skisum88@...> >Reply-Plagiocephaly >Plagiocephaly >Subject: DEBBIE >Date: Thu, 07 Oct 2004 18:11:32 -0000 > > >Debbie, >We saw a craniofacial surgeon the first time back in April. I am >going elsewhere for a 2nd band, to Hanger which deals w/ Hanger and >StarBand helmets. >~Amy, mommy to Jaden 11 mo's MN >CranioCap Grad > > > > > > > Amy in MN, > > > We live in North Dakota and are taking our twins to the Mayo > > Clinic PT/OT there. They just started to use the Starband which >is > > FDA approved- which I didn't really know- I haven't heard about > > Hanger, but I am sure it will work as well. My girls are 5 >months > > old, but I have heard good things about older kids with plagio >as > > well. My older twin has to have surgery because she has > > craniosynositos which is a different situation- but the other is > > getting her first helmet on Monday! > > > > > > Good luck to you, > > > Debbie, mom to Cameron and Skylar > > > Thank you for opinions/ Jaden Front Page >Star > > > > > > > > > > > > Thank you to everyone who responded to Jaden being the Front > > Page > > > Star. And thanks to everyone who took the time to look at >his > > > file/photos and give an honest opinion. You are the reason >why > > I > > > was able to put him in his 1st helmet w/o thinking I was >making > > a > > > big mistake! > > > > > > After reading your comments, I went ahead a just made the >appt > > to > > > get him scanned at Hanger next week. After all >this "rushing" > > to > > > make sure he got in his 1st helmet in a timely fashion, and > > reading > > > everyone's experiences and being assured by mom's of older > > babies, I > > > am comforable putting him in a 2nd helmet by 11 & 1/2 months >of > > age > > > (he'd receive it at the end of this month), and know that he > > should > > > still be able to get some good rounding out despite the fact > > that he > > > is a bit older now. For those of you who have not reassured >me, > > > PLEASE DO! I still need it! lol I would love to hear older > > babies > > > positive experiences and the correction they recieved from > > either a > > > 1st or 2nd helmet. > > > > > > Christie, was it you that posted about the new approved FDA > > helmet > > > in MN? Anyways, it's news to me, and something I was not >aware > > of. > > > I'd love to know more when you find out. I am thinking it >will > > be > > > located just in the Twin Cities, where the biggest >population is > > > located. > > > > > > I will be deciding between a StarBand or a Hanger band next >week > > > depending on the ortho's experience, however I understand >them > > to > > > both me pretty similar and hard to tell apart from each >other. > > > Thanks for the support everyone. I really appreciate it! > > > > > > ~Amy, mommy to Jaden 11 mo's MN > > > CranioCap Grad > > > > > > > > > > > > > > > > > > > > > > > > For more plagio info