new to the group

August 20, 2009

Sorry to confuse you. Yes, on the band. They need to make sure it fits properly before you leave. Didn't shave the head.

From: hibbs82879@... <hibbs82879@...>Subject: Re: new to the groupPlagiocephaly Date: Thursday, August 20, 2009, 9:47 AM

thanks!!! i amsure i will have more to say/ask when she gets it. what do you mean shaved one area down? on the band?thanks,karen> > > From: hibbs82879@. .. <hibbs82879@ ...>> Subject: new to the group> Plagiocephaly> Date: Wednesday, August 19, 2009, 10:10 PM> > > > > > > i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks!>

August 21, 2009

My son just graduated from his DOC band a few weeks ago. Whoooohooo!! He

started at 6 months and I was told to expect a minimum of 3 months. It turns

out he only needed it for 6 weeks!! He had so many growth spurts during those 6

weeks that that was all it took. I have to admit, it was a pretty tough the

first two days in the band. He hated it and would cry and cry at night. I was

counseled to leave it on though. I just about killed me. After about 2 days

and nights he finally got more adjusted to it and by the end of the first week,

he was totally fine with it. I have to admit, I didn't have it on the whole 23

hours like they say....I would give him about a 2 hour break in the AM when he

woke up and then a 2 hour break in the late afternoon before bed. he looks

sooooo much better now though. Hang in there...you will be so glad you did it!

>

> i am new to this group...my daughter Emma will be getting her band in 2

weeks...any advice for me/us? i am very nervous. she is 6 months old and i am

told she will need it for 3-4 months. thanks!

>

August 21, 2009

thank you so much for writing this! i am very nervous about it all and how she

will react to it...after reading this i know what to expect a little more.

congrats to you and your son!

> >

> > i am new to this group...my daughter Emma will be getting her band in 2

weeks...any advice for me/us? i am very nervous. she is 6 months old and i am

told she will need it for 3-4 months. thanks!

> >

>

August 21, 2009

Congrats to you and your son. That is awesome it only took six weeks. My son is six months today and we started this process on Monday. We are actually going to CT today because he had a red spot that didn't go away for hours. My opinion his head grew because there are no open spots in the helmet. We'll see. I hope my son doesn't have to wear it for 3-4 months or has to get a second band. Did your son need a second band???

From: a_dauterive <alexia@...>Subject: Re: new to the groupPlagiocephaly Date: Friday, August 21, 2009, 9:04 AM

My son just graduated from his DOC band a few weeks ago. Whoooohooo!! He started at 6 months and I was told to expect a minimum of 3 months. It turns out he only needed it for 6 weeks!! He had so many growth spurts during those 6 weeks that that was all it took. I have to admit, it was a pretty tough the first two days in the band. He hated it and would cry and cry at night. I was counseled to leave it on though. I just about killed me. After about 2 days and nights he finally got more adjusted to it and by the end of the first week, he was totally fine with it. I have to admit, I didn't have it on the whole 23 hours like they say....I would give him about a 2 hour break in the AM when he woke up and then a 2 hour break in the late afternoon before bed. he looks sooooo much better now though. Hang in there...you will be so glad you did it!>> i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks!>

August 21, 2009

My son started his band with Hanger at 6.5 months old and so far we've been in

it for 5 weeks and have had a great experience. He adjusted immediately, he has

never even seemed to notice it, even in the 110 degree Phoenix heat! At our 3

week checkup he measured 8mm, down from an original measurement of 14mm! Our

projected wear time is 3 months but could possibly be even sooner depending on

how fast he grows. I do miss hugging him closely and sometimes the band bangs

into your head so watch out (!) but overall just relax and know that you will

get results and it's not as bad as it seems.

And as far as cleaning the Hanger instructions have worked very well for us: I

wash the interior with a toothbrush and Dawn liquid soap once a day and tap a

little J & J Baby powder pure cornstarch inside after it dries and we have had no

problems with odor.

In the end I know we will be so happy we did it, and this will pass before you

know it, so hang in there. Good luck!

> > >

> > > i am new to this group...my daughter Emma will be getting her band in 2

weeks...any advice for me/us? i am very nervous. she is 6 months old and i am

told she will need it for 3-4 months. thanks!

> > >

> >

>

August 21, 2009

The instructions for the Hanger band specifically say not to use water when cleaning:http://www.hanger.com/ThePatientExperience/Pediatrics/Pages/Plagiocephaly.aspxHow do I clean the Hanger Cranial Band?The soft foam lining of the Hanger Cranial Band does not absorb water or perspiration. It should be cleaned daily with a cloth dampened with rubbing alcohol. Do not use soap and water; soap residue can lead to skin irritations. To help prevent irritations please make certain the band is completely dry prior to putting it on your baby.MollyOn Aug 21, 2009, at 3:16 PM, "remydublin" <jenferia@...> wrote:My son started his band with Hanger at 6.5 months old and so far we've been in it for 5 weeks and have had a great experience. He adjusted immediately, he has never even seemed to notice it, even in the 110 degree Phoenix heat! At our 3 week checkup he measured 8mm, down from an original measurement of 14mm! Our projected wear time is 3 months but could possibly be even sooner depending on how fast he grows. I do miss hugging him closely and sometimes the band bangs into your head so watch out (!) but overall just relax and know that you will get results and it's not as bad as it seems. And as far as cleaning the Hanger instructions have worked very well for us: I wash the interior with a toothbrush and Dawn liquid soap once a day and tap a little J & J Baby powder pure cornstarch inside after it dries and we have had no problems with odor.In the end I know we will be so happy we did it, and this will pass before you know it, so hang in there. Good luck!i am new to this group...my daughter Emma will be getting her band in 2 weeks...any advice for me/us? i am very nervous. she is 6 months old and i am told she will need it for 3-4 months. thanks!------------------------------------For more plagio info

August 23, 2009

Hi, my son ely was banded 3 weeks ago. The first 5 days was pretty tough on me.

The baby wasnt that uncomfortable, but i was. It is bearable. The first few days

i was about to quit the helmet. But then my baby got well adjusted pretty

quickly. Hang in there. You can see results very quick if u abide by the rules

and wear it 23 hours a day.

good luck

miriam

>

> i am new to this group...my daughter Emma will be getting her band in 2

weeks...any advice for me/us? i am very nervous. she is 6 months old and i am

told she will need it for 3-4 months. thanks!

>

September 1, 2009

Hi and welcome, this is a great group.

Some RA patients notice differences in disease activity in response to certain

foods, so it can't hurt to keep a food diary and see if anything triggers an

increase in pain. I don't really notice much connection, but I think everyone

is unique.

Hang in there. You are going through the worst part, when you have scary,

painful symtpoms and no firm cause or treatment plan. The right rheumatologist

can be your partner on this journey. You might want to set up another appt so

you can interview a couple of rheums to find the one who is right for you. Try

to get rest and activity when you're able. Water exercise can really be a

godsend.

Best, Kate F

________________________________

From: cjsc91128 <cjsc91128@...>

Sent: Tuesday, September 1, 2009 1:49:10 PM

Subject: [ ] New to the group

Hi everyone,

I'm new to the group and haven't actually gotten my dx yet. I have a neuroma in

my right foot and went to a doctor after about a 3 month flare up that wouldn't

subside. I thought the tenderness in my knees and wrist might be related but the

blood work came back with a rhumetoid factor of over 600. So, she referred me to

a rhumetologist which I won't get to see until September 22. Searching the

internet for information, I found you.

I must say, reading through the messages I'm becoming more alarmed by the

minute. Right now, the steroids have relieved the pain everywhere, shrunk the

pinched nerve in my foot, and the only discomfort that has returned is in my

right wrist.

What can I do in the meantime to reduce the inflammation and flare up that will

inevitably return before I can get to the doctor? I read a mention about

changing our diets?

Thanks in advance for any direction/guidance.

September 1, 2009

Hi ! Welcome to our group!!

Kate is right on the mark about talking to other RA docs - I've just gone

through that and it is of the upmost importance to feel that you relate with

your doc. If you don't - you are wasting your time as well as the doc's. This

group helped me with finding 2 fantastic websites: www.ratemds.com &

www.vitals.com - you type in the type physician & state, etc - then you can read

where the doc did their schooling, their residency and even see possible

comments from patients. It will sometimes show their school ranking. Add that to

referrals from friends, other doc, etc. if you can - even review what you have

selected with your PCP if you want.

If I can just add to a great comment Kate made - the food diary is great - some

of us see a relationship between some foods that you'd never imagine - others

don't. Add to that though - the type of weather you are experiencing. Weather

changes effect a lot of us and many of us - No. I personally see patterns in

both. As far as I know, finding patterns doesn't cure it ( I WISH!) but it sure

can help you navigate thru all of the " muddy waters " of RA!

Keep us posted and again....Welcome!

in SC

From: Fair <kalfoley@...>

Subject: Re: [ ] New to the group

Date: Tuesday, September 1, 2009, 4:24 PM

Hi and welcome, this is a great group.

Some RA patients notice differences in disease activity in response to certain

foods, so it can't hurt to keep a food diary and see if anything triggers an

increase in pain. I don't really notice much connection, but I think everyone

is unique.

Hang in there. You are going through the worst part, when you have scary,

painful symtpoms and no firm cause or treatment plan. The right rheumatologist

can be your partner on this journey. You might want to set up another appt so

you can interview a couple of rheums to find the one who is right for you. Try

to get rest and activity when you're able. Water exercise can really be a

godsend.

Best, Kate F

____________ _________ _________ __

From: cjsc91128 <cjsc91128 (DOT) com>

@gro ups.com

Sent: Tuesday, September 1, 2009 1:49:10 PM

Subject: [ ] New to the group

Hi everyone,

I'm new to the group and haven't actually gotten my dx yet. I have a neuroma in

my right foot and went to a doctor after about a 3 month flare up that wouldn't

subside. I thought the tenderness in my knees and wrist might be related but the

blood work came back with a rhumetoid factor of over 600. So, she referred me to

a rhumetologist which I won't get to see until September 22. Searching the

internet for information, I found you.

I must say, reading through the messages I'm becoming more alarmed by the

minute. Right now, the steroids have relieved the pain everywhere, shrunk the

pinched nerve in my foot, and the only discomfort that has returned is in my

right wrist.

What can I do in the meantime to reduce the inflammation and flare up that will

inevitably return before I can get to the doctor? I read a mention about

changing our diets?

Thanks in advance for any direction/guidance.

September 1, 2009

,

Unfortunately, it often does take a while to get in for a first visit

with a rheumatologist. You might call and ask them to put you on a

cancellation list. Then if someone cancels, you could get in earlier.

In the meantime, you might ask the doctor who referred you to

prescribe a low dose of prednisone while you're waiting. It has a lot

of bad side effects, but a low dose for a short while should not harm

you.

I've never seen a relationship between my RA and my diet.

Sue

On Sep 1, 2009, at 2:49 PM, cjsc91128 wrote:

> Hi everyone,

> I'm new to the group and haven't actually gotten my dx yet. I have

> a neuroma in my right foot and went to a doctor after about a 3

> month flare up that wouldn't subside. I thought the tenderness in my

> knees and wrist might be related but the blood work came back with a

> rhumetoid factor of over 600. So, she referred me to a rhumetologist

> which I won't get to see until September 22. Searching the internet

> for information, I found you.

> I must say, reading through the messages I'm becoming more alarmed

> by the minute. Right now, the steroids have relieved the pain

> everywhere, shrunk the pinched nerve in my foot, and the only

> discomfort that has returned is in my right wrist.

> What can I do in the meantime to reduce the inflammation and flare

> up that will inevitably return before I can get to the doctor? I

> read a mention about changing our diets?

> Thanks in advance for any direction/guidance.

>

September 10, 2009

Hi Jen, sorry that you had to join this group, but I agree, it is a great

place to be when you have CML!

I have two questions for you. 1. How low is your WBC? A low wbc count is

normal for someone starting out on Gleevec. My first ONC did not know this

and panicked over my low counts. I was started, stopped, raised and lowered

so many times I felt like a Yo-Yo (no comments from my fans please! LOL) 2.

How much experience does this doctor have with CML and Gleevec? This is an

important question and related to the first. If doctors don't understand

some of the peculiarities of Gleevec they might do more harm than good. I

had to change my ONC early on. My first did not know much (he was open to

learning when I brought him data from Dr. Drucker (did I spell his name

right... blame it on CRS) but he was way behind the curve.)

I'm sure you will get a lot more good input here. You might let us know a

little more about yourself.

Troxel

On Wed, Sep 9, 2009 at 7:56 PM, jms30@... <jms30@...> wrote:

>

> I am new to the group. I was diagnosed with CML in May of this year.

> Totally caught me by surprise. I started Gleevec on May 31, 2009. At the end

> of June my levels were normal. When I went for my next appt on August 28,

> 2009, my hemoglobin was 5.8. I received a Procrit shot and told to come back

> in 2 weeks for another one. I called the Dr. the next Thursday and told them

> to recheck. My hemoglobin was the same but my wbc count was low. The Dr.

> ordered me off of Gleevec for a week. I go back on Friday for another blood

> draw and another Procrit shot. My emotions have been up and down with this.

> I know my hemoglobin is coming up as I don't feel so tired anymore.

>

> I am glad that I found this group.

>

> Jen

>

September 10, 2009

HI JEN, WELCOME TO OUR GROUP. I WAS DX IN 1995, AND AM ONE OF THE OLD TIMERS OF

THE GROUP, I'M 79. AS RICHARD STATED, IT IS VERY IMPORTANT TO HAVE A GOOD CML

DOCTOR IF IT IS AT ALL POSSIBLE, CML IS A RARE DISEASE, AND YOUR AVERAGE DOCTOR

MAY NEVER EVEN HAD A PATIENT WITH IT,. BUT THERE ARE LOTS OF PEOPLE ON THIS

SITE THAT WILL HELP YOU WITH ANY PROBLEMS YOU MAY HAVE, HELP YOUR DOCTOR TOO!!

BLESSINGS, BOBBY

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's

Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

From: jms30@... <jms30@...>

Subject: [ ] new to the group

Date: Wednesday, September 9, 2009, 10:56 PM

I am new to the group. I was diagnosed with CML in May of this

year. Totally caught me by surprise. I started Gleevec on May 31, 2009. At the

end of June my levels were normal. When I went for my next appt on August 28,

2009, my hemoglobin was 5.8. I received a Procrit shot and told to come back in

2 weeks for another one. I called the Dr. the next Thursday and told them to

recheck. My hemoglobin was the same but my wbc count was low. The Dr. ordered me

off of Gleevec for a week. I go back on Friday for another blood draw and

another Procrit shot. My emotions have been up and down with this. I know my

hemoglobin is coming up as I don't feel so tired anymore.

I am glad that I found this group.

Jen

September 10, 2009

--- Hi Jen: I also am sorry to see you had to join a group for CML, but your

off to a great start by joining. Everyone is so supportive, and we even have

time for some laughs to keep us positive. I totally agree with the other

responses. Be sure that you have a doctor who specializes in CML. So many

doctors do not know enough about Gleevec etc. My WBC runs as low as the 3 and 4

range, therefore, what is your WBC. Ask anything at anytime. We have some long

time warriors on here who have dealt with every possible problem you can think

of.

I was diagnosed in 1998, and doing just fine.

Welcome to Our Group

In , " jms30@... " <jms30@...> wrote:

>

> I am new to the group. I was diagnosed with CML in May of this year. Totally

caught me by surprise. I started Gleevec on May 31, 2009. At the end of June my

levels were normal. When I went for my next appt on August 28, 2009, my

hemoglobin was 5.8. I received a Procrit shot and told to come back in 2 weeks

for another one. I called the Dr. the next Thursday and told them to recheck. My

hemoglobin was the same but my wbc count was low. The Dr. ordered me off of

Gleevec for a week. I go back on Friday for another blood draw and another

Procrit shot. My emotions have been up and down with this. I know my hemoglobin

is coming up as I don't feel so tired anymore.

>

> I am glad that I found this group.

>

> Jen

>

September 10, 2009

I found right away that my Dr. is not up to speed on CML. I ventured out to

Seattle in June and visitied Dr. sdorf at the SCCA. He is wonderful and

gave me a lot of insight about CML and my prognosis. I am headed to a teaching

hospital in Chicago in 2 weeks to talk with a Dr there. (I was refered to him by

the Dr in Seattle) I feel like I am teaching the Dr that I have now.

I am not sure at this moment what my wbc count was. I go back to the Dr tomorrow

to re-check everything and get another Procrit shot.

About me.....I am a 36 year old mother of 4. I have a 14(almost 15)year old

daughter, an 8 year old daughter, a 5 year old son and a 2(almost 3) year old

daughter. They keep me extremely busy. My poor husband and son! They are

surrounded by hormones. At least the dog is a male.

I am very fortunate to have very supportive family and friends. They are all

amazing. I am so happy that I found this group. I have read a lot of the posts

and have learned a lot already.

> >

> > I am new to the group. I was diagnosed with CML in May of this year. Totally

caught me by surprise. I started Gleevec on May 31, 2009. At the end of June my

levels were normal. When I went for my next appt on August 28, 2009, my

hemoglobin was 5.8. I received a Procrit shot and told to come back in 2 weeks

for another one. I called the Dr. the next Thursday and told them to recheck. My

hemoglobin was the same but my wbc count was low. The Dr. ordered me off of

Gleevec for a week. I go back on Friday for another blood draw and another

Procrit shot. My emotions have been up and down with this. I know my hemoglobin

is coming up as I don't feel so tired anymore.

> >

> > I am glad that I found this group.

> >

> > Jen

> >

>

September 11, 2009

Hi Jen: Glad you are following up wherever you feel necessary. Sounds like you

have a very nice family and supportive husband. That helps more than anything.

I know from experience and the support and care I have gotten from my husband

and family. It really helps with your day to day challenges. Keep in Touch,

and let us all know how your doing.

God Bless

Suzzie

From: jms30@... <jms30@...>

Subject: [ ] Re: new to the group

Date: Thursday, September 10, 2009, 6:12 PM