Holly

[Guest guest]

Hi and welcome to the group. I think I just replied to your husband

as well . If you look in our photo section at Willow's pics, she

had a Dr. Blecher helmet. Holly should transition fine into her

helmet and not have problems when you put it on. She may get mad at

having to hold still for a moment, but thats about it! You will

easily be able to take the band off to put her clothes on and off,

though the kind that button should fit over the helmet. I'm not

sure about this helmet, though i'm sure others who have used it will

chime in as far as the swimming goes, but I know most aren't

supposed to get wet. You can use that time as her hour off for the

day though or if it's a special occasion give her a small extra time

off while she's in the water.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

--- In Plagiocephaly , " tandhmum " <nataliecat@f...>

wrote:

> Hello everyone,

> My husband, Simon and I have a daughter who is 10 months old and

> called Holly. When she was 2 weeks old I mentioned to the midwife

she

> only ever looked to the right. She said nothing. I mentioned it to

> the health visitor when Holly was 25 days old and she said tell

the

> GP at Holly's check. She had this at a little over 7 weeks old and

he

> said he would reassess in 6 weeks time. We continued to see him

> monthly and all he did was measure the head. As she got older I

asked

> if the head flatness could have anything to do with why she

couldn't

> sit up. A flat No was given but still no help or advice apart from

> she would be referred to a paediatritian if she wasn't sitting by

9

> months. She sat at 8.5 months but is still wobbly at times. An

> opthamologist referred Holly and we saw a consultant paediatritian

2

> weeks ago. He diagnosed mild plagiocephaly and said Holly was a

> little hypotonic. The latter was written in her " red book " with no

> mention to us. I went on the internet and discovered there could

be a

> link and more disheartening that Holly should have had treatment

for

> her head position months ago. We saw a specialist at Harley Street

> yesterday who said her condition was moderate and after agonising

> for an hour decided to have a helmet. He also told us Holly has a

> problem with her neck that no one had ever picked up on and it

could

> have been treated with exercises from a few weeks old and could

have

> helped. Too late to help the head now. Having seen a photo of

I

> am reassured as the helmet doesn't look as scary as I imagined and

> looks very happy. I am sure we have done the right thing but

I

> am scared about how I will cope. I don't have many people that I

am

> close to or see often and I also have to care for who is 3.

> How will I get Holly's clothes over the helmet? Can she still

swim?

> Will she cry everytime we put it on? Please help us. x

[Guest guest]

Hi and welcome to the group!!

I can see that has pretty much covered everything that I was

going to say, so I just wanted to say hello. As far as coping goes,

you'll be fine. They are quite easy to adjust too. When I first saw

Makenna in her helmet for the first time, I cried, but grew used to

very quick. After awhile, she looked odd without it. You'll do great

and I am sure Holly will do even better!! :-)

Please keep us posted on her progress.

, mom to Makenna LLUMC helmet grad '03

--- In Plagiocephaly , " tandhmum " <nataliecat@f...>

wrote:

> Hello everyone,

> My husband, Simon and I have a daughter who is 10 months old and

> called Holly. When she was 2 weeks old I mentioned to the midwife

she

> only ever looked to the right. She said nothing. I mentioned it to

> the health visitor when Holly was 25 days old and she said tell the

> GP at Holly's check. She had this at a little over 7 weeks old and

he

> said he would reassess in 6 weeks time. We continued to see him

> monthly and all he did was measure the head. As she got older I

asked

> if the head flatness could have anything to do with why she

couldn't

> sit up. A flat No was given but still no help or advice apart from

> she would be referred to a paediatritian if she wasn't sitting by 9

> months. She sat at 8.5 months but is still wobbly at times. An

> opthamologist referred Holly and we saw a consultant paediatritian

2

> weeks ago. He diagnosed mild plagiocephaly and said Holly was a

> little hypotonic. The latter was written in her " red book " with no

> mention to us. I went on the internet and discovered there could be

a

> link and more disheartening that Holly should have had treatment

for

> her head position months ago. We saw a specialist at Harley Street

> yesterday who said her condition was moderate and after agonising

> for an hour decided to have a helmet. He also told us Holly has a

> problem with her neck that no one had ever picked up on and it

could

> have been treated with exercises from a few weeks old and could

have

> helped. Too late to help the head now. Having seen a photo of

I

> am reassured as the helmet doesn't look as scary as I imagined and

> looks very happy. I am sure we have done the right thing but I

> am scared about how I will cope. I don't have many people that I am

> close to or see often and I also have to care for who is 3.

> How will I get Holly's clothes over the helmet? Can she still swim?

> Will she cry everytime we put it on? Please help us. x

[Guest guest]

HELLO, MY NAME IS ROBIN AND MY YOUNGEST SON, TANNER WAS 6

WEEKS EARLY AND I HAVE NOTICED A DELAY IN SOME AREAS. WE

ALSO HAVE JUST GOT INVOLVED IN THE EARLY INTERVENTIONS

PROGRAM. WE ARE GOING TO GET P.T. HERE IN OUR HOME, AND A

D.T. WILL SCREEN HIM WED. HE IS 9 1/2 MONTHS NOW AND HE

ROLLS ALL OVER BUT HE DOESNT SIT UP BY HISSELF. HE HAS

TORT/PLAGIO/SCOLIOSIS BUT HE ALSO IS VERY LAYED BACK AND

EASY GOING SO ITS HARD TO TELL IF THERE IS A PROBLEM. MY

OLDEST CHILD WAS FULL TERM AND HAD NO PROBLEMS, (BESIDES

EAR'S) AND SHE DID EVERYTHING LATE. I'M JUST GLAD WE HAVE

THIS PROGRAM NOW SO IF THERE IS A REAL PROBLEM ATLEAST WE

ARE TRYING TO DO SOMETHING ABOUT IT.

ROBIN

[Guest guest]

> we are using naet....what is saras diet? Angie (la)

My kids required lutein/carotene elimination [sara's diet] until the

very end of ALA chelation

http://saras-autism-diet.freeservers.com/Exile/III-5.html

Dana

[Guest guest]

Hi Holly! Sorry it has taken so long to get back to you. I'm

flaring these days amoung other things. I'm sorry about the DX there

kiddo. You are awfully young, I think for some younger people in

particular that is more difficult to deal with the DX. It certainly

isn't easy for anyone of us as one may imagine. I hope that they can

find the right med combo for you like yesterday!!!! I can only

imagine how frustrating it all is. I see that you have 2 young

boys. That can be a handful!!! But, once they find a combo that

will help - not only will that search be over but then hopefully you

can be up and running! Are you on any anti-depressents? They say

they help with the pain as well as stress reduction which alone helps

in more than one way and it should help some with the fibro. I'm

sorry the Lortabs don't help - be sure to bring that up with your doc

at the next visit if you can stand it or call b4 that if need be! I

can't imagine how hard it must be for you after being so indepenent

to possibly needing help to get out of bed. That is quite a slammy!

It is a process and time underneath your belt with all this will lend

some comfort and help! Feeling so hopeless at times is part of it

for some and that tends to exhaust a person, both emotionally and

physically. I try to think of making adjustments as changes for the

better. Trick myself into believing (joke - long story) It will get

better somehow, some way!!!! I know whole waiting for that day it

gets tough but you know you can vent here anytime and people here do

understand and are pulling for you! Hang in there sweetie and keep

us posted on what is going on with you when you can!!! Take care.

Kim

[Guest guest]

Whoa Holly!

You took on a lot of challenges in this lifetime, didn't you! You

must be going for the gold medal!

Hope you are doing much better these days. Hope you have a good

doctor also.

Take care.

Ebony

RA, etc.

>

> > I have not been diagnosed with lupus but I read up

> > on it and it seems like I have most of the symtoms.

> > Is there

> > anything to take or do for Lupus or is it like

> > fibromialgia where the drs are baffled and do not

> > know how to treat you?

> > God Bless

> > Bonnie

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

>

>

> Kathe

>

> " To ride a horse is to borrow freedom. "

>

>

>

> __________________________________________________

>

[Guest guest]

Thank you Holly for your e-mail, I am so happy I did

not discourage you about BMT. I pray that you have

the sucess that I have seen in our Med Day Unit.

They seem to be healthy and happy, there is so much

more out there to make it easier than when I first

became aware of CML.. be safe I will keep you in my

thoughts

SkipD

--- Holly McCloy <hollyt0825@...> wrote:

> Thank you for your concern. It wasn't anything that

> you had said. What bothered me the most was this: I

> feel that as long as we can avoid

> > transplant, we can

> > > hopefully stick around.

> > > in NY

> > >

> Also, Zavie's comment about mortality rates. I

> understand that these comments were not made in a

> malicious manner or to hurt anyone. I am about 6

> weeks until transplant, and I am having a very hard

> time with it emotionally (who wouldn't?). I can't

> sleep because of anxiety and rather than keep my

> partner up all night I tend to get on the computer

> and look in on various groups. Usually this is very

> helpful. But sometimes I see things like this and

> it bothers me. Last night it made a bad night

> unbearable. I just hope the people who wrote these

> things will remember that when you write on this

> board it doesn't just show up to a few people you

> might intend it for. You must keep in mind it can

> be read by anyone. Again, I appreciate your email

> and I am so happy for you that you have done so

> well. I will pray that you continue to.

> Thank you,

> Holly

> Skip Duffie <skipd_2002@...> wrote:

> Holly if you read my e-mail again you will see I

> said that years ago BMT were not working well but

> you will see I said " I see BMT patients in Med day

> all the time now and they seem to do very very well "

> I hope anything I wrote did not bother you..

> SkipD

>

> Repeat "

> Hello Tracey and ,

> Tracey thanks..I do not post often only if I think

> I can add something to the group. I read all....

>

> no I never had a transplant, when I first took

> CML that was not an option. Nor was a lot of things

> we have today. I think after being on Myleran it

> spoiled the chance of a transplant, I am not sorry

> I think I would not have survived so long if I had

> had

> one. In fact after a few years on Mylerand (

> BUSULFAN)many of the folks that had various forms of

> leukemia had not survived with a BMT. Now they seem

> to survive just fine I see BMT patients all the time

> in med day and they do just fine. Your right Tracey

> I

> never had ccr either, in fact never heard of FISH

> PCR

> or any of the other names until last couple of years

> thanks to you and Zaviem and this wonderful group.

> I have started a log of my low counts so that others

> with either low or high counts know that they are

> just

> another blip on the road and not to be overly

> concerned. "

> SkipD

> Dx'ed 1978

> http://easyskip.tripod.com

> for my counts and story

> --- Tracey wrote:

>

>

>

>

>

>

________________________________________________________________________________\

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>

>

>

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http://autos./green_center/

[Guest guest]

Dear Holly.

I felt compelled to reply to your post too as I am sure we all do right now.

First, I would like to say that I am sure Zavie did not mean to say anything

to hurt you or anyone else.

I would also like to take the time to let you know that we all acknowledge

that each and everyone of us would have felt like you did after reading that

post considering your current situation. Obviously you are very emotional

right now as we all would be if we were you.

I personally feel the same way about BMT's and I agree we need to find a

better way to express our feelings when discussing it on line so that

someone like yourself or someone new who may not be as fortunate to be in

Chronic phase won't feel worse than they already do.

I would be willing to bet that you too felt similar about BMT's previously

and I think that what we all really want to say is that if there are other

options then we would prefer to leave the BMT as a last resort. Not just

because of the risk that are involved but also because the drugs are easier

to handle then the overall affects of a transplant. Lets face it ' we all

know its the easier route and who wouldn't take easier? But the truth is

that we all know a transplant is the only known " cure " for CML.

And I am sure you agree after being a survivor and doing well on Gleevec for

so many years, we are all worried that the day will come when we too may be

faced with your situation. Out of fear for ourselves and for others we are

hoping and praying that the new drugs becoming available will lead to newer

drugs that prevent people like us and yourself from having to endure the

journey you are about to begin.

I hope that in no way will my words offend you as I am merely trying to

comfort you and let you know that you are not alone and that no mater what

words of encouragement I can think of for you today, nothing would be better

than the truth and the truth is that you and the others who come to this

phase in the journey are our heroes!

We are inspired and encourage by you who must have a BMT and those who

choose to have a BMT. Also make no doubt about it Holly' you are making a

choice. A choice that takes a lot of courage to make.

It is through your journey and the journey of others with the will to

succeed that we receive the strength to face our inner fears and continue to

believe that if one day we reach that fork in the road, our heroes before us

have set the pace for us to stand up and take our turn.

Please if you have not already, prepare a caring bridge site so that we can

be there as best as we can to support you, pray for you and your progress,

and know that we all want nothing less than for you to conquer this CML and

be cured!

As for the information Tracey shared about Dr's who push some patients into

BMT when it's not necessary, it's true.

I was one of them almost 7 years ago who was just about forced into a BMT. I

was so scared not to follow the Dr's orders then, but now so glad that I

didn't. Even my doctor has admitted recently that if it were him in my shoes

7 years ago he would have only hoped that he made the choice that I did. I

didn't do that alone. I did that with the support of the people in these

groups.

Before diagnosis I new nothing about any treatments for cancer, nor had I

ever heard of CML for that matter.

I am so grateful for the time I have had to learn and I think that if the

day of transplant ever came for me that these last 7 years and these

wonderful supporters we have here will have added so much more courage to my

character.

I may take me some time to realize it initially, but I believe that the

people in this community would find away to remind me that I will never be

alone in the fight!

Holly' today you are my Hero and my prayers are with you in your new

journey.

Please don't leave us out. We need each other!

ez

Tampa Florida

DX 5-2000

HYD/INTERFERON/ARC

6-2001 gleevec 400 mgs

8-2001 PCRU

Waiting for new results from bmb/bma taken 3-13-07

[Guest guest]

Dear Holly,

I second what Tracey says. Right now I am going through the process

of having my entire family HLA typed in preparation for the

possibility of BMT, and truthfully, this is something we all might

have to face sometime in the future. I am thankful the option

exists. I am not absorbing Gleevec well for some as yet unknown

reason, and Dr Druker says I may not absorb any of the drugs of the

same type as Gleevec for that same unknown reason. So I have to be

ready for transplant. I have every confidence (with the support of

this wonderful group) that I can go through the transplant process if

neccsary, survive it, thrive, and live happily for many years

thereafter CML-free! If it comes to that, I am ready!!

So don't despair! The majority of people who have transplants live

long lives and BMT is the one treatment that promises a cure for

CML. We don't yet know what Gleevec and these other drugs have in

the future for us--we all hope it is good things, but there is no

guarantee--they are too new! With people like Skip, you can see that

the disease can be survived; even before these drugs existed, he had

many years of survival so you just think positive and hang in there!

Like Tracey says--we support you, we are praying for you, and you can

do this with absolute success!

Many blessings,

Vicki

>

> Dear Holly,

>

> I'm sorry your situation has changed and that you are now facing a

> transplant. I'm also sorry that there were comments made that hurt

> you. I can totally understand how scared and upset you must feel.

>

> Please know though, that the people in this group (including those

> who made the comments that hurt you), have always supported people

> who chose to go to transplant or who were forced to go to

transplant

> for one reason or another.

>

> I will admit that many of us feel as though transplant should be

the

> last option but it is infact an option, sometimes the ONLY option

and

> many times it is indeed a very successful option.

>

> I want you to know that we will be behind you 100% during this

> journey and I really hope that you'll choose to stay here to keep

us

> updated as we route for you. Your experiences will be of great

value

> to others who may be in the same boat as you. As you said

yourself,

> you never know who may be reading this board and there could very

> well be someone that your experience will be of value to.

>

> Best wishes,

> Tracey

>

[Guest guest]

Dear Holly

I don't post often either but read this and other lists daily. I am 55 years

old and had a bmt in 1993, from my brother. The transplant was difficult, but

manageable. I spent around 3 months in hospital and probably another 9 months

recovering at home. I returned to full-time teaching 18 months later. I had 11

years cml free, but unfortunately relapsed in 2004. Even so, Glivec now is

working for me, and because of the transplant there is some chance that I may

eventually become cml free again. My quality of life is excellent, and has been

for most of the 14 years since transplant. I am happy to discuss any of this

with you privately, or here on the list. BMT is not first choice now because

Glivec is so effective for so many, but it is curative for many and when and if

the time comes you need to look upon it as the means to save your life. You

have already made the most difficult step of deciding on transplant, now

surround yourself with positive people who will

support your journey through this process. I am praying for you Holly, you

will be fine, begin with the belief that this is the best thing for you right

now and know that the outcome for you is cure.

JudyTelford Melbourne Australia

Send instant messages to your online friends http://au.messenger.

[Guest guest]

Holly leaves were formerly used as a diaphoretic and an infusion of them was given in catarrh, bronchitis, pneumonia, influenza, pleurisy and smallpox. They have also been used in intermittent fevers and rheumatism for their tonic properties. The juice of the fresh leaves has been used to advantage in jaundice, and when sniffed was said to stop a runny nose. When soaked in vinegar and left for a day and a night, it was used to cure corns. An old remedy for chilblains was to thrash them with a branch of Holly to “chase the chills out”, but this could also be painful. The berries possess totally different qualities to the leaves, being violently emetic and purgative, a very few can cause excessive vomiting soon after they are swallowed. They have been used in dropsy, also in a powder as an astringent to check bleeding. Culpepper say’s “the bark and leaves are good used as fomentations for broken bones and such members as are out of joint”. He also considered

the berries to be curative of colic. Care needs to be taken though, for the berries can be poisonous to children. Birdlime used to catch birds and other insects is made from the bark when stripped off young shoots and fermented. The bark is stripped off during midsummer and steeped in clean water, then boiled till it separates into layers. When this happens the inner green portion is laid up in small heaps till fermentation begins. After about a fortnight it turns into a sticky gooey substance, which is then pounded into a paste, washed and laid by again to continue fermenting. When done it is mixed with an oily substance like goose-fat and is ready for use. Very little is now made in this country but of old in the Lake Districts of the north of England, Holly was so abundant that birdlime was made in large quantities and shipped to the East Indies for destroying insects. The leaves of the Holly were used in the Black Forest as a substitute for tea.

In Brazil “Paraguay Tea” is made from the dried leaves and young shoots of another species of Holly called (Ilex Paraguayensis), which grows in South America. Other types used to make tea are (Ilex Gongonha) and (Ilex Theezans), which like the (Ilex Paraguayensis), were also valuable diuretics and diaphoretics. The leaves of (Ilex Paraguayensis) and several others are also used by dyers, as are the unripe fruits of (Ilex Macoucoua) for they contain tannin. Acting something like galls when bruised in a ferruginous mud, they were used in dyeing cotton. Suzi List Owner health/ http://360./suziesgoats What is a weed? A plant whose virtues have not yet been discovered.

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