New member Introduction

Posted September 18, 2006 · September 18, 2006

Oh Kerry, I absolutely second what Natasha has said. Any discharge

is a MAJOR red flag and you are absolutely right to be concerned.

Don't let your ortho brush this off. Something needs to be fixed.

Becky

, repo grad

>

> Hi,

>

> My name is Kerry and my son Tyler is 9 months old as of 9/6/06.

He

> has had the STARband since 8/8/06. We live in Bloomsbury, New

Jersey

> and travel to Sewell New Jersey for our fittings (about 2 hours

> away). My son has been having problems with heat rash and

irritation

> from the helmet. He sometimes gets a discharge from the helmet

when he

> wears it for a long time. My orthotist is not concerned - but I

am.

> Any suggestions would be welcome!

>

> Thanks,

>

> Kerry

>

> Tyler, 9mos STARband since 8/8/06. Other children, , 6yrs,

> , 14 yrs and 17 yrs.

>

Posted December 10, 2006 · December 10, 2006

Sorry everyone I already introduced myself I am having a stupid moment!!LOL

Turning 48 was harder on me than I thought!

Marsha

marshahostetler <marshahostetler@...> wrote:

Hi,

My name is Marsha I was dignosed with RA three months ago. I am

slowly finding out what I am in for. I have more good days than bad

right now and I am cherishing all the good days.

My shoulders, fingers and feet are what I notice right now. I just

turned 48 today which was such a wonderful day for my husband and

myself.

I am glad to be here.

Marsha

Posted August 24, 2007 · August 24, 2007

Elaine wrote:

Will be going in next week for a radiation treatment with a

sensitizing chemo. Not getting a full chemo therapy.

--

We have been talking about sodium bicarbonate treatments and you are one of the

lucky ones because with your cancer its easy to apply the bicarbonate, magnesium

chloride and even iodine to local tissues in and around your cancer..... You

tell me what sense is there in using something that causes cancer to cure

cancer?

Go to http://www.cancerfungus.com/ to see Dr. Tullio Simoncini's work on

bicarbonate cancer treatments. I am friends with him and am going to publish the

most comprehensive info for patients and clinicians on this and also make

referals to the first people in the States coming online with such treatments.

Now to the group. How is that for sticking my neck out a mile? Long enough? We

could take this emergency situation as a group discussion but if we do please

lets remember that someone's life is on the line. I am sure just about everyone

in this group can appreciate that. Elaine you might not want to do that and get

in touch with me privately. I am at your disposal.

Dr. Sircus

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

From: Elaine Gallant

Recently diagnosed with stage 3 cerivcal cancer.

Will be going in next week for a radiation treatment with a

sensitizing chemo. Not getting a full chemo therapy.

Posted August 24, 2007 · August 24, 2007

Hi Elaine,

If you would like a cancer-healing plan with a proven 50-year track

record and a free group with plenty of members who are healing

from various cancers with this plan to talk with, please read the

linked message. You may not need to rush into radiation/chemo.

Others have postponed such treatments and let the natural ones work

their magic. The members mentioned in the linked message are

active in our FlaxseedOil2 group.

/message/26161

Best wishes,

" Elaine Gallant " wrote:

> Recently diagnosed with stage 3 cerivcal cancer.

> Will be going in next week for a radiation treatment with a

> sensitizing chemo. Not getting a full chemo therapy.

> I'm interested in all forms of alternate medicine and have had luck in

> the past. It has proved possible to control high blood pressure and

> migraine headaches without allopathic medicine.

>

Posted October 2, 2007 · October 2, 2007

Hi I am in a similar boat. I just went to the neurologist

today with my son. He is only 31/2 months old but I was concerned with

his head enough to push for the appointment. She also said that he has

moderate plagio and could benifit from the helmet. I have an

appointment at hanger next week. I am having him Christened on Oct. 21

and then I am assuming we will start the band. I too have tried the

repositioning and feel that it is not working. I also go to PT with

him for torticolis, check to make sure your baby doesn't have this as

well, it can be mild and cause him to keep laying on the one side.

Good luck and I hope we both like Hanger Bands as they will be

supplying mine as well, I live on Long Island though. Take care, Tammy

Posted October 2, 2007 · October 2, 2007

Welcome! This is a great place to ask questions. Your banding

experience should go well...we had a great experience with the DOC

band. I know people have had good experiences with Hanger as well.

The band should not hinder your son's development. I wondered the

same thing but found that the band didn't hinder our son's

development at all. He actually learned to do things during the

time he had his band.

I asked about breastfeeding and everyone said it was doable. I

can't comment on breastfeeding while in the band because I ended up

weaning my son prior to him getting the band for other reasons. I

would definitely continue and hopefully other mom's can give some

helpful tips on how to make it work with the band.

Daycare...I'm not sure as I am a stay at home mom but I would think

just making sure the daycare knows how to take the band on and off.

Also, if they will have your son in their care at the beginning of

the banding process that they know what to check for. I'd make a

copy of the instruction sheet that Hanger gives you (at least I

assume they'll give you an instruction sheet).

Happy banding...have fun decorating the band.

>

> Hello all,

> I joined the group last week and have enjoyed reading the very

informative

> posts and wanted to introduce ourselves. (I especially like the

warning

> about the dog--we have two dogs and I've already lost one retainer

to them

> so I KNOW they'd have an interest in the helmet!)

>

> Charlie just turned 7 months yesterday and we are getting our

helmet next

> Tuesday from Hanger in S. Easton, Mass. I started seeing a flat

spot when he

> was about 3-4 months old and we were assured by our pedi (who I do

really

> like) that it would start to go away on its own. We tried all

sorts of

> repositioning, tummy time, and kept him upright as much as

possible. No

> matter what we did, he always favored his right side. When he

started

> holding his head up more and sitting, I only saw a slight

improvement. At

> his 5-month appointment, I asked for a referral. So, off to

Children's

> Hospital we went. We saw Dr. Mark Procter (after a 6-week wait for

an appt)

> and he measured 12mm off which he said was moderate, but did

recommend the

> therapy.

>

> We were able to get an appointment within days at Hanger and I

feel very

> comfortable with our technician, . He did a laser scan last

Thursday

> and estimated that he'll need it for 2-3 months. After a couple of

weeks of

> feeling guilty (Did we do enough??, etc.), DH and I are prepared

for this

> change and see it as such a little blip in his life. All I can

picture him

> saying when he's 8 and trying on bike helmets is, " Ma, why didn't

you fix my

> head?? " ha!

>

> We were able to get preapproved with Tufts HMO and only have a

$500 copay.

>

> I do have a couple of questions:

> Sitting and crawling:

> Has anyone noticed that the helmet delays your child's ability to

sit up

> and/or crawl? Charlie's very steady sitting and starting to show

interest in

> crawling (backwards at least!) and I'm worried that this may

hinder his

> efforts.

>

> Breastfeeding:

> I'm still nursing a few times a day and not particularly ready to

wean yet.

> said that I could remove the helmet for nursing since

they're such

> short intervals anyway and really build on our bonding experience.

My

> problem is that except for our AM nursing session, he tends to

fall asleep

> and I don't think I can bear to wake him to put the helmet back

on. Any

> advice?

>

> Daycare:

> He's in daycare 3x/week. Fortunately (I guess you could say!),

they've had

> one boy with a helmet so they are familiar with it. Any other

advice I can

> give to my child care provider?

>

> I'm sure I'll have quite a few more questions next week after we

get helmet

> on. I know that there is an adjustment period and he's really a

very

> easy-going little guy. We haven't told many people yet (not even

our older

> kids!) so that's something that I know I really have to get over

(like I'm

> going to be judged) and get over quick...

>

> Thanks,

>

> Walpole, Mass.

>

Posted October 3, 2007 · October 3, 2007

Thanks, , for the reassurance! We're getting one with a Patriots logo on it... we'll definitely be adding some Red Sox stickers to it as well! Go Sox!

From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of lka_236Sent: Wednesday, October 03, 2007 12:51 AMPlagiocephaly Subject: Re: New member introduction

Welcome! This is a great place to ask questions. Your banding experience should go well...we had a great experience with the DOC band. I know people have had good experiences with Hanger as well.The band should not hinder your son's development. I wondered the same thing but found that the band didn't hinder our son's development at all. He actually learned to do things during the time he had his band. I asked about breastfeeding and everyone said it was doable. I can't comment on breastfeeding while in the band because I ended up weaning my son prior to him getting the band for other reasons. I would definitely continue and hopefully other mom's can give some helpful tips on how to make it work with the band.Daycare...I'm not sure as I am a stay at home mom but I would think just making sure the daycare knows how to take the band on and off. Also, if they will have your son in their care at the beginning of the banding process that they know what to check for. I'd make a copy of the instruction sheet that Hanger gives you (at least I assume they'll give you an instruction sheet).Happy banding...have fun decorating the band.>> Hello all,> I joined the group last week and have enjoyed reading the very informative> posts and wanted to introduce ourselves. (I especially like the warning> about the dog--we have two dogs and I've already lost one retainer to them> so I KNOW they'd have an interest in the helmet!)> > Charlie just turned 7 months yesterday and we are getting our helmet next> Tuesday from Hanger in S. Easton, Mass. I started seeing a flat spot when he> was about 3-4 months old and we were assured by our pedi (who I do really> like) that it would start to go away on its own. We tried all sorts of> repositioning, tummy time, and kept him upright as much as possible. No> matter what we did, he always favored his right side. When he started> holding his head up more and sitting, I only saw a slight improvement. At> his 5-month appointment, I asked for a referral. So, off to Children's> Hospital we went. We saw Dr. Mark Procter (after a 6-week wait for an appt)> and he measured 12mm off which he said was moderate, but did recommend the> therapy.> > We were able to get an appointment within days at Hanger and I feel very> comfortable with our technician, . He did a laser scan last Thursday> and estimated that he'll need it for 2-3 months. After a couple of weeks of> feeling guilty (Did we do enough??, etc.), DH and I are prepared for this> change and see it as such a little blip in his life. All I can picture him> saying when he's 8 and trying on bike helmets is, "Ma, why didn't you fix my> head??" ha!> > We were able to get preapproved with Tufts HMO and only have a $500 copay.> > I do have a couple of questions:> Sitting and crawling:> Has anyone noticed that the helmet delays your child's ability to sit up> and/or crawl? Charlie's very steady sitting and starting to show interest in> crawling (backwards at least!) and I'm worried that this may hinder his> efforts.> > Breastfeeding:> I'm still nursing a few times a day and not particularly ready to wean yet.> said that I could remove the helmet for nursing since they're such> short intervals anyway and really build on our bonding experience. My> problem is that except for our AM nursing session, he tends to fall asleep> and I don't think I can bear to wake him to put the helmet back on. Any> advice?> > Daycare:> He's in daycare 3x/week. Fortunately (I guess you could say!), they've had> one boy with a helmet so they are familiar with it. Any other advice I can> give to my child care provider?> > I'm sure I'll have quite a few more questions next week after we get helmet> on. I know that there is an adjustment period and he's really a very> easy-going little guy. We haven't told many people yet (not even our older> kids!) so that's something that I know I really have to get over (like I'm> going to be judged) and get over quick...> > Thanks,> > Walpole, Mass.>

Posted October 3, 2007 · October 3, 2007

Tammy,

No, he doesn't have Tort... I was concerned about it and had them check for that in the beginning. Also, the neurologist at Children's gave me the all clear. Now that he's up and about, too, he goes to either side--it was just during his infancy that he favored the right.

As parents, we really do need to be proactive... It's truly amazing to me that some pedis see this as a cosmetic treatment. When I asked my pedi if she would do it, she said that she wouldn't which really surprised me.

Happy Christening to your son!

Best,

From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of princessluauSent: Tuesday, October 02, 2007 10:55 PMPlagiocephaly Subject: Re: New member introduction

Hi I am in a similar boat. I just went to the neurologist today with my son. He is only 31/2 months old but I was concerned with his head enough to push for the appointment. She also said that he has moderate plagio and could benifit from the helmet. I have an appointment at hanger next week. I am having him Christened on Oct. 21 and then I am assuming we will start the band. I too have tried the repositioning and feel that it is not working. I also go to PT with him for torticolis, check to make sure your baby doesn't have this as well, it can be mild and cause him to keep laying on the one side. Good luck and I hope we both like Hanger Bands as they will be supplying mine as well, I live on Long Island though. Take care, Tammy

Posted October 3, 2007 · October 3, 2007

Hello, and welcome to the group! My daughter has a Hanger

helmet right now and has been in it about a month and we have already

seen great improvement. She measured about 14mm at the beginning with

no obvious facial deformity, but ears were misaligned. Her ears are

almost perfectly aligned now so I am excited about your journey ahead.

My daughter was about 5 1/2 months when she first got her helmet and I

was pretty much breastfeeding exclusively. I have had no difficulty

breasfeeding...it was a little awkward at first, but once you find a

good position for both all is well. I got a down feather pillow and

laid that across my belly and my daughter seemed to get good,

comfortable support for her helmet head. My daughter would fall

asleep nursing with her helmet on...so we never missed a beat. I

still feel that special bond regardless of the helmet and she seems

just a content as ever. It was hard at first to not be able to stroke

her hair or head while she was nursing, but know I just hold her

little hand. Definitely continue to breastfeed; in fact, you may even

help his transition to the helmet by not changing a routine he is use to.

Good luck,

I look forward to hearing about your progress!

Becky

>

> Hello all,

> I joined the group last week and have enjoyed reading the very

informative

> posts and wanted to introduce ourselves. (I especially like the warning

> about the dog--we have two dogs and I've already lost one retainer

to them

> so I KNOW they'd have an interest in the helmet!)

>

> Charlie just turned 7 months yesterday and we are getting our helmet

when he

> was about 3-4 months old and we were assured by our pedi (who I do

really

> like) that it would start to go away on its own. We tried all sorts of

> repositioning, tummy time, and kept him upright as much as possible. No

> matter what we did, he always favored his right side. When he started

> holding his head up more and sitting, I only saw a slight

improvement. At

> his 5-month appointment, I asked for a referral. So, off to Children's

> Hospital we went. We saw Dr. Mark Procter (after a 6-week wait for

an appt)

> and he measured 12mm off which he said was moderate, but did

recommend the

> therapy.

>

> We were able to get an appointment within days at Hanger and I feel very

> comfortable with our technician, . He did a laser scan last

Thursday

> and estimated that he'll need it for 2-3 months. After a couple of

weeks of

> feeling guilty (Did we do enough??, etc.), DH and I are prepared for

this

> change and see it as such a little blip in his life. All I can

picture him

> saying when he's 8 and trying on bike helmets is, " Ma, why didn't

you fix my

> head?? " ha!

>

> We were able to get preapproved with Tufts HMO and only have a $500

copay.

>

> I do have a couple of questions:

> Sitting and crawling:

> Has anyone noticed that the helmet delays your child's ability to sit up

> and/or crawl? Charlie's very steady sitting and starting to show

interest in

> crawling (backwards at least!) and I'm worried that this may hinder his

> efforts.

>

> Breastfeeding:

> I'm still nursing a few times a day and not particularly ready to

wean yet.

> said that I could remove the helmet for nursing since they're such

> short intervals anyway and really build on our bonding experience. My

> problem is that except for our AM nursing session, he tends to fall

asleep

> and I don't think I can bear to wake him to put the helmet back on. Any

> advice?

>

> Daycare:

> He's in daycare 3x/week. Fortunately (I guess you could say!),

they've had

> one boy with a helmet so they are familiar with it. Any other advice

I can

> give to my child care provider?

>

> I'm sure I'll have quite a few more questions next week after we get

helmet

> on. I know that there is an adjustment period and he's really a very

> easy-going little guy. We haven't told many people yet (not even our

older

> kids!) so that's something that I know I really have to get over

(like I'm

> going to be judged) and get over quick...

>

> Thanks,

>

> Walpole, Mass.

>

Posted May 31, 2008 · May 31, 2008

G'Morning everyone,

My name is Sharon.I am a 40 year old female.I was diagnosed

yesterday with Chronic Luekemia(CML). I have many additional health

issues.I have Diabetis,low cholesterol,chronic

Gastritis,IBS,Diverticulosis and Leaky heart matrial valves. I have

had Gastric Bypass surgery and Lapband surgery.I have malabsorption

issues due to this.I am Vit D deficient and have episodes of anemia

when iron infusions are needed.I am often dehydrated as well.I take

medications for all of these issues as well as MANY vitamins and

minerals due to the Gastric Bypass surgery and my absorption

issues.So there is a little history about me.If there are any

questions please feel free to ask.

My DR has perscribed Gleevec(400mg) daily and Zyloprim (100mg)

daily.My Dr. is concerned that I will absorb enough of the medication

to help.I know virtually nothing about this condition and am now

researching to see what I can learn.I thought this support group

would be a great place to start. I have a terrible time taking

medications.I can't physically swallow a pill larger tahn a tylenol

due to my Lapband and the stoma opening being very tiny to help

restrict intake.I haven't filled the perscription yet and am worried

about the pill size.Are these meds big? What are the side effects

others here suffer from due to the meds and/or condition?

I have tons of questions but I will just start here for now.Any

info or literature etc to help me find my way would be wonderful.

My Dr. said the word Luekemia often scares people and they feel it

is a life sentence but it is not the case.Is this true?Can I plan on

a long life? I was told not to worry..Is he placading me?

Hope everyone has a great weekend..

Thanks

SharonS

Posted June 1, 2008 · June 1, 2008

,

Thanks for the info and encouraging words.Do you know if the big

horse pill can be cut to make the pieces smaller?I will keep reading

what all the others here have to share as I have alot to learn.

Thanks again

SharonS

In , Rosen Lum <rrosenlum@...> wrote:

>

> A warm welcome, Sharon. You betcha you can plan on a long life, as

much as anyone on the planet can. Beware of what you read online,

some of the information you come by is outdated already. When I got

diagnosed in '05 I went to the Merck site and read that I could

expect to live about 18 months. What a shocker that was! And of

course it was just very outdated information. My best source of

information has been THIS GROUP. It's a wealth of very current

information, friendly encouragement, empathy and support!

>

> About swallowing the pills. They do come in a tiny, 100-mg. size.

You might do better to take four of those rather than the one horse

pill.

>

> in San Francisco

>

> @...: serenitywon@...: Sat, 31 May 2008 17:37:47

+0000Subject: [ ] New member Introduction

>

> G'Morning everyone,My name is Sharon.I am a 40 year old female.I

was diagnosed yesterday with Chronic Luekemia(CML). I have many

additional health issues.I have Diabetis,low cholesterol,chronic

Gastritis,IBS,Diverticulosis and Leaky heart matrial valves. I have

had Gastric Bypass surgery and Lapband surgery.I have malabsorption

issues due to this.I am Vit D deficient and have episodes of anemia

when iron infusions are needed.I am often dehydrated as well.I take

medications for all of these issues as well as MANY vitamins and

minerals due to the Gastric Bypass surgery and my absorption

issues.So there is a little history about me.If there are any

questions please feel free to ask.My DR has perscribed Gleevec(400mg)

daily and Zyloprim (100mg) daily.My Dr. is concerned that I will

absorb enough of the medication to help.I know virtually nothing

about this condition and am now researching to see what I can learn.I

thought this support group would be a great place to start. I have a

terrible time taking medications.I can't physically swallow a pill

larger tahn a tylenol due to my Lapband and the stoma opening being

very tiny to help restrict intake.I haven't filled the perscription

yet and am worried about the pill size.Are these meds big? What are

the side effects others here suffer from due to the meds and/or

condition?I have tons of questions but I will just start here for

now.Any info or literature etc to help me find my way would be

wonderful.My Dr. said the word Luekemia often scares people and they

feel it is a life sentence but it is not the case.Is this true?Can I

plan on a long life? I was told not to worry..Is he placading me?Hope

everyone has a great weekend..ThanksSharonS

>

> _________________________________________________________________

> Make every e-mail and IM count. Join the i'm Initiative from

Microsoft.

> http://im.live.com/Messenger/IM/Join/Default.aspx?source=EML_WL_

MakeCount

>

Posted June 1, 2008 · June 1, 2008

Hi Sharon, I'm 78, have had CML for 13 years, and I am in my fifth trial. When

I was dx they said I had 5 years, about, to live. Ha! Ha! I'm still here and

don't plan on going anywhere for quite a while. Welcome to our " family " , it's a

great group, Bobby Doyle

serenitywon <serenitywon@...> wrote: