RE: Ken

[Guest guest]

Ken

Christian is my third child who has RSS and has been on GH for nearly three

years.He was never on a centile pre GH but now he is on the 25%centile for

height and just above the 9%centile for weight.on is my fourth

child[my eldest two are 7 and 9 and are of average height]harrison was on

the 75%centile [height]at birth and 50th[weight]Between birth and a year he

dropped a centile every three months[height]and by the time he was two he

was on the 2nd %centile[height]25%[weight]He has stayed there and is now 3.8

years[about the same age as if i'm right]he saw Stanhope at

Christians appointment and he is happy with his size as both myself and my

husband are 5'4 " .He doesn't want to test his growth hormones and he wouldn't

put him on GH because that would be purely cosmetic.I have always said that

whatever height Christian is as an adult I could say that I did all I could,

and thats my worry with on,am I doing all I can.It will be very

difficult to explain when they are older when Christian is possibly three

inches taller than on and he is the one with the 'growth

disorder'.[There is only 14 months between them and even now they get

grouped together]Anyway thats my problem,on definatly is not RSS,he is

very healthy ,but he is small-[92.5cms tall/small and 32 lbs]

Joanne

reply to Joanne Rose

> Hi Joanne,

>

> I have a couple of questions.

>

> Which one is your son? on or Christian?

>

> If on is your son, has a geneticist or a pediatric

> endocrinologist confirmed he does not have RSS ?

>

> Have you gotten a second opinion ?

>

> Has either benn tested for growth hormone levels?

>

> My son has RSS and everytime I see him around children his own

> age I am surprised at how small he really is. Even though I try not

> to, I am constantly comparing him to other kids. So I don't think you

> have lost it. Or maybe we both have !

>

> Have you or your doctors considered growth hormone therapy?

>

> I ask this because my wife and I were struggling with this very

> question until we met with his pediatric endocrinologist last

> November. It was a typical visit until the very end when she asked

> about growth hormone ? Our response was we were not sure if it was

> right or not since he seems to be doing better than the average RSS

> child. Then she asked " Do you want to be 18, 5 feet tall, never

> had growth hormone treatment and asking Why didn't you try? "

>

> We were stunned by her question because up until this visit she was

> decidedly against growth hormone for RSS kids or kids with idiopathic

> short stature.

>

> Before we could answer she said it would be better to try because not

> all RSS or ISS kids benefit from growth hormone. She also said there

> was more evidience that would benefit ( hence the change of

> mind).

>

> Anyway, my point is, it might be best to discuss it with your son's

> doctor and maybe consider a trial period. It may not work but there

> seems to be only one way to find out.

>

> Right now my son seems to be having growth spurt but when this appears

> to end is when we will probably start him on growth hormone for a

> trial period.

>

> I hope this helps.

>

> Ken M

>

>

>

> > Jodi

> > Today I e-mailed magic about my youngest son who seems to be only

> just managing to stay on the 2%centile for his height.I wanted some

> advice on whether I ws doing the right thing just accepting that he is

> short because of my husband only being 5'4 " but I think that

> mentioning Christians RSS has confused them because they have passed

> my e-mail to you.on definatly does not have RSS but I don't no

> if i'm just being obcessive[do you unconciously measure every child

> you see or have I reallylost it]or is there something I've missed

> ie/ghd or constitutional growth disorder.Anyway sorry for the

> confusion,I just thought I would explain myself.

> > Joanne

> >

> >

> >

[Guest guest]

Joanne

Your letter about on is very interesting to me because I also have a son

whose birth size was large, but he is now the size of an rss child. I have been

worried because his doctor seems to be taking a very long time about sending us

to have his growth hormone tested. He is a little younger than on. He is

39 months, 89cm tall and 24 lbs, and has been the same since at least before

November. So far, the experts say he may end up taller than dad (6'2 " ) if he

has constitutional slow growth. Apparantly some people grow later. My father

in law says that he grew 2 " in height while he was in the army between ages 19

and 22. I still have difficulty with the fact that he has only gained 16 lbs

since birth, even less than rss children who had to catch up from very tiny

birth weights. is very healthy, but he shares clothing with his 1 year

old brother!

Cheryl (mom of , not rss, just not growing)

joannerose wrote:

> Ken

> Christian is my third child who has RSS and has been on GH for nearly three

> years.He was never on a centile pre GH but now he is on the 25%centile for

> height and just above the 9%centile for weight.on is my fourth

> child[my eldest two are 7 and 9 and are of average height]harrison was on

> the 75%centile [height]at birth and 50th[weight]Between birth and a year he

> dropped a centile every three months[height]and by the time he was two he

> was on the 2nd %centile[height]25%[weight]He has stayed there and is now 3.8

> years[about the same age as if i'm right]he saw Stanhope at

> Christians appointment and he is happy with his size as both myself and my

> husband are 5'4 " .He doesn't want to test his growth hormones and he wouldn't

> put him on GH because that would be purely cosmetic.I have always said that

> whatever height Christian is as an adult I could say that I did all I could,

> and thats my worry with on,am I doing all I can.It will be very

> difficult to explain when they are older when Christian is possibly three

> inches taller than on and he is the one with the 'growth

> disorder'.[There is only 14 months between them and even now they get

> grouped together]Anyway thats my problem,on definatly is not RSS,he is

> very healthy ,but he is small-[92.5cms tall/small and 32 lbs]

> Joanne

> reply to Joanne Rose

>

> > Hi Joanne,

> >

> > I have a couple of questions.

> >

> > Which one is your son? on or Christian?

> >

> > If on is your son, has a geneticist or a pediatric

> > endocrinologist confirmed he does not have RSS ?

> >

> > Have you gotten a second opinion ?

> >

> > Has either benn tested for growth hormone levels?

> >

> > My son has RSS and everytime I see him around children his own

> > age I am surprised at how small he really is. Even though I try not

> > to, I am constantly comparing him to other kids. So I don't think you

> > have lost it. Or maybe we both have !

> >

> > Have you or your doctors considered growth hormone therapy?

> >

> > I ask this because my wife and I were struggling with this very

> > question until we met with his pediatric endocrinologist last

> > November. It was a typical visit until the very end when she asked

> > about growth hormone ? Our response was we were not sure if it was

> > right or not since he seems to be doing better than the average RSS

> > child. Then she asked " Do you want to be 18, 5 feet tall, never

> > had growth hormone treatment and asking Why didn't you try? "

> >

> > We were stunned by her question because up until this visit she was

> > decidedly against growth hormone for RSS kids or kids with idiopathic

> > short stature.

> >

> > Before we could answer she said it would be better to try because not

> > all RSS or ISS kids benefit from growth hormone. She also said there

> > was more evidience that would benefit ( hence the change of

> > mind).

> >

> > Anyway, my point is, it might be best to discuss it with your son's

> > doctor and maybe consider a trial period. It may not work but there

> > seems to be only one way to find out.

> >

> > Right now my son seems to be having growth spurt but when this appears

> > to end is when we will probably start him on growth hormone for a

> > trial period.

> >

> > I hope this helps.

> >

> > Ken M

> >

> >

> >

> > > Jodi

> > > Today I e-mailed magic about my youngest son who seems to be only

> > just managing to stay on the 2%centile for his height.I wanted some

> > advice on whether I ws doing the right thing just accepting that he is

> > short because of my husband only being 5'4 " but I think that

> > mentioning Christians RSS has confused them because they have passed

> > my e-mail to you.on definatly does not have RSS but I don't no

> > if i'm just being obcessive[do you unconciously measure every child

> > you see or have I reallylost it]or is there something I've missed

> > ie/ghd or constitutional growth disorder.Anyway sorry for the

> > confusion,I just thought I would explain myself.

> > > Joanne

> > >

> > >

> > >

[Guest guest]

Barbara

My thoughts and prayers are with you as you move through the next few

days.

Sally in KS

[Guest guest]

Dear Barbara,

Will be thinking and praying for you and your family during these next days. It's very painful to lose someone you're so close to, even when you know that they're in a better place. Smiles and hugs, Diane

Ken

Dear dear Friends: As many of you know I went to Yosemite last week and was able to have a wonderful relaxing respite. I had told Ken please to wait here until I returned, and he had agreed. On Sunday, as I was driving home, he developed a fever, and by Monday it was apparent that he was ready to go. He had waited until he knew I was on my way home, but I know the struggle was getting too much for him. On Monday I was able to tell him that if it was time for him to go, that I and the kids would be all right and that I was sure we would see each other again someday. I told him how much I loved him and asked if he understood what I was saying. He said he did. Again last night when he was obviously in bad shape, I told him the same thing again, and again he indicated he understood. At 4 AM this morning, I awakened to find his body was limp but his body was warm, and there was color in his face. While my daughter and I watched, the color left him, and it was obvious he was gone. We have sent his brain tissue off to Dr. Benneroch at Mayo for his Shy-Drager study, and Ken is finally released from this dreadful disease. You have all become my closest confidants, and I cannot tell you how grateful I am for all the support you have given me. When I can get past the next few days, I shall send on some of the pictures I took at Yosemite. My only regret is that Ken was unable to share this trip he so generously allowed me to have before he left me. Love to all of you my good good friends, Barbara

[Guest guest]

Barbara:

I am so sorry to hear about Ken's passing. He is so fortunate to have such a

loving and caring wife as yourself. Keep taking good care of yourself!

Suzanne Grimmesey-Kirk, MFT

Quality Care Management

Voice: 884-1647

FAX: 884-1633

>>> kmcrae@... 05/02/01 06:55PM >>>

Dear dear Friends:

As many of you know I went to Yosemite last week and was able to have

a wonderful relaxing respite. I had told Ken please to wait here until I

returned, and he had agreed. On Sunday, as I was driving home, he developed a

fever, and by Monday it was apparent that he was ready to go. He had waited

until he knew I was on my way home, but I know the struggle was getting too

much for him. On Monday I was able to tell him that if it was time for him to

go, that I and the kids would be all right and that I was sure we would see

each other again someday. I told him how much I loved him and asked if he

understood what I was saying. He said he did. Again last night when he was

obviously in bad shape, I told him the same thing again, and again he

indicated he understood. At 4 AM this morning, I awakened to find his body

was limp but his body was warm, and there was color in his face. While my

daughter and I watched, the color left him, and it was obvious he was gone.

We have sent his brain tissue off to Dr. Benneroch at Mayo for his Shy-Drager

study, and Ken is finally released from this dreadful disease.

You have all become my closest confidants, and I cannot tell you how

grateful I am for all the support you have given me. When I can get past the

next few days, I shall send on some of the pictures I took at Yosemite. My

only regret is that Ken was unable to share this trip he so generously

allowed me to have before he left me.

Love to all of you my good good friends,

Barbara

[Guest guest]

Oh, Barbara, I am so sorry for your loss and that Ken ever had this disease. We all know that you were prepared months ago for what seemed were the last days and Ken rallied. When my mother Joyce was on the respirator, I let her know that it was up to her and that if she chose to stay we would take care of her and if she chose to leave, we would be OK. I am glad you got to let Ken know this, too. Don't forget that you were not only together at the end -- but what is more important: you were together through all of it.

Your trip to Yosemite was when everyone had the chance to let go of this disease. I am thinking of you and Ken and your family, Debbie

[Guest guest]

Barbara, I am so sorry. You will be in my thoughts and prayers. You have been a good wife to Ken and always know you have done everything in your power to help and care for him. I wish we could be there for you. Take care, Kathy Ken Dear dear Friends: As many of you know I went to Yosemite last week and was able to have a wonderful relaxing respite. I had told Ken please to wait here until I returned, and he had agreed. On Sunday, as I was driving home, he developed a fever, and by Monday it was apparent that he was ready to go. He had waited until he knew I was on my way home, but I know the struggle was getting too much for him. On Monday I was able to tell him that if it was time for him to go, that I and the kids would be all right and that I was sure we would see each other again someday. I told him how much I loved him and asked if he understood what I was saying. He said he did. Again last night when he was obviously in bad shape, I told him the same thing again, and again he indicated he understood. At 4 AM this morning, I awakened to find his body was limp but his body was warm, and there was color in his face. While my daughter and I watched, the color left him, and it was obvious he was gone. We have sent his brain tissue off to Dr. Benneroch at Mayo for his Shy-Drager study, and Ken is finally released from this dreadful disease. You have all become my closest confidants, and I cannot tell you how grateful I am for all the support you have given me. When I can get past the next few days, I shall send on some of the pictures I took at Yosemite. My only regret is that Ken was unable to share this trip he so generously allowed me to have before he left me. Love to all of you my good good friends, Barbara

[Guest guest]

Barbara:

I am so sorry to hear of Ken's passing because of this dreadful disease.

I'm also glad you were able to spend time with him at the end.

My deepest sympathies to you and your family.

Carole Barber

On Wed, 2 May 2001 21:55:05 EDT kmcrae@... writes:

> Dear dear Friends:

> As many of you know I went to Yosemite last week and was

> able to have

> a wonderful relaxing respite. I had told Ken please to wait here

> until I

> returned, and he had agreed. On Sunday, as I was driving home, he

> developed a

> fever, and by Monday it was apparent that he was ready to go. He had

> waited

> until he knew I was on my way home, but I know the struggle was

> getting too

> much for him. On Monday I was able to tell him that if it was time

> for him to

> go, that I and the kids would be all right and that I was sure we

> would see

> each other again someday. I told him how much I loved him and asked

> if he

> understood what I was saying. He said he did. Again last night when

> he was

> obviously in bad shape, I told him the same thing again, and again

> he

> indicated he understood. At 4 AM this morning, I awakened to find

> his body

> was limp but his body was warm, and there was color in his face.

> While my

> daughter and I watched, the color left him, and it was obvious he

> was gone.

> We have sent his brain tissue off to Dr. Benneroch at Mayo for his

> Shy-Drager

> study, and Ken is finally released from this dreadful disease.

> You have all become my closest confidants, and I cannot tell

> you how

> grateful I am for all the support you have given me. When I can get

> past the

> next few days, I shall send on some of the pictures I took at

> Yosemite. My

> only regret is that Ken was unable to share this trip he so

> generously

> allowed me to have before he left me.

> Love to all of you my good good friends,

> Barbara

________________________________________________________________

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[Guest guest]

Dear Barbara: My heart goes out to you at this time. I know

how difficult it is to lose a soul mate, best friend and husband all rolled

into one. I also know I had to feel relief that my husband wasn't

suffering any longer. My thoughts are certainly with you now.

(Ont. Can.)

kmcrae@... wrote:

Dear dear

Friends:

As many of you know I went to Yosemite last week and was able to

have

a wonderful relaxing respite.

I had told Ken please to wait here until I

returned, and he had agreed.

On Sunday, as I was driving home, he developed a

fever, and by Monday it

was apparent that he was ready to go. He had waited

until he knew I was on my

way home, but I know the struggle was getting too

much for him. On Monday

I was able to tell him that if it was time for him to

go, that I and the kids

would be all right and that I was sure we would see

each other again someday.

I told him how much I loved him and asked if he

understood what I was saying.

He said he did. Again last night when he was

obviously in bad shape,

I told him the same thing again, and again he

indicated he understood.

At 4 AM this morning, I awakened to find his body

was limp but his body was

warm, and there was color in his face. While my

daughter and I watched,

the color left him, and it was obvious he was gone.

We have sent his brain tissue

off to Dr. Benneroch at Mayo for his Shy-Drager

study, and Ken is finally

released from this dreadful disease.

You have all become my closest confidants, and I cannot tell you how

grateful I am for all the

support you have given me. When I can get past the

next few days, I shall send

on some of the pictures I took at Yosemite. My

only regret is that Ken

was unable to share this trip he so generously

allowed me to have before

he left me.

Love to all of you my good good friends,

Barbara

[Guest guest]

Dear Barbara,

I am so sorry for your loss. You were a good, loving wife to him til the

end.

Tricia Jensen

Glendale, California

pajensen@...

----- >

[Guest guest]

Barbara,

I am so sorry for your loss. I pray for peace and

comfort for you and your family at this most difficult

time. Ken is no longer a prisoner to this terrible

disease. I'm certain he is smiling down on you now.

God bless you.

in OK

__________________________________________________

[Guest guest]

Hi Barbara: Bob & I wish to express our deepest sympathy to you. We have

you in our prayers & thoughts. Take comfort in the fact that Ken is no

longer suffering with this horrible disease. Regards, jerrie

[Guest guest]

Barb,

I will join the others in expressing my sincere sympathy to you in your

loss.

May God bless you and give you comfort.

Jerry Cash

Re: Ken

Hi Barbara: Bob & I wish to express our deepest sympathy to you. We have

you in our prayers & thoughts. Take comfort in the fact that Ken is no

longer suffering with this horrible disease. Regards, jerrie

[Guest guest]

Dear Barbara,

Our heartfelt thoughts and prayers go out to you and your family. You were a wonderful wife to Ken and a great inspiration to me. It was with your information about Hospice that I finally brought Hospice in yesterday to help Mark and me. Ken can now have peace and not have to be a prisoner to this dreadful disorder.

Give Wona a big hug and kiss and all the other critters too. You will find your best friends are still there with you begging for your love and realizing your pain.

Love,

Judy

[Guest guest]

Dear Barbara: So sorry to hear of the death of your dear, dear Ken. Our

thoughts and prayers and love are with you and all your family. You were a

strong and loving caregiver all these years and the both of you gave your

best against this cruel and relentless shy-drager. You are in our prayers

always. Love, Bob and Pat from Framingham, Massachusetts.

[Guest guest]

Dear Barbara,

I too send my condolences to you and your family. Thank you for sharing your

experiences. It has been meaningful to me and much appreciated.

Sincerely, V.

[Guest guest]

Dear Barbara,

I am sorry for your loss yet realize that Ken is at peace now. You have

been a wonderful wife, caregiver and friend to him and please know you did

all that was right and possible for him.

Your friend, S.

Ken

> Dear dear Friends:

> As many of you know I went to Yosemite last week and was able to

have

> a wonderful relaxing respite. I had told Ken please to wait here until I

> returned, and he had agreed. On Sunday, as I was driving home, he

developed a

> fever, and by Monday it was apparent that he was ready to go. He had

waited

> until he knew I was on my way home, but I know the struggle was getting

too

> much for him. On Monday I was able to tell him that if it was time for him

to

> go, that I and the kids would be all right and that I was sure we would

see

> each other again someday. I told him how much I loved him and asked if he

> understood what I was saying. He said he did. Again last night when he was

> obviously in bad shape, I told him the same thing again, and again he

> indicated he understood. At 4 AM this morning, I awakened to find his body

> was limp but his body was warm, and there was color in his face. While my

> daughter and I watched, the color left him, and it was obvious he was

gone.

> We have sent his brain tissue off to Dr. Benneroch at Mayo for his

Shy-Drager

> study, and Ken is finally released from this dreadful disease.

> You have all become my closest confidants, and I cannot tell you

how

> grateful I am for all the support you have given me. When I can get past

the

> next few days, I shall send on some of the pictures I took at Yosemite. My

> only regret is that Ken was unable to share this trip he so generously

> allowed me to have before he left me.

> Love to all of you my good good friends,

> Barbara

>

[Guest guest]

Barbara,

My prayers and thoughts are with you and your family at this time. You

have been a wonderful wife and worked so very hard for so long to help him.

I pray that you will find peace in the memories you have shared until you

meet again.

From one of your MSA family

(Phx)

[Guest guest]

Barbara , My deepest sympathy to you. My prayers are with you and

your family. Believe me, Ken was with you on your trip as he is now.

You all were together and always will be. Betsy

-- In shydrager@y..., CAROLE A BARBER <BARBER.CAROLE@J...>

wrote:

> Barbara:

>

> I am so sorry to hear of Ken's passing because of this dreadful

disease.

> I'm also glad you were able to spend time with him at the end.

>

> My deepest sympathies to you and your family.

>

> Carole Barber

>

> On Wed, 2 May 2001 21:55:05 EDT kmcrae@a... writes:

> > Dear dear Friends:

> > As many of you know I went to Yosemite last week and was

> > able to have

> > a wonderful relaxing respite. I had told Ken please to wait here

> > until I

> > returned, and he had agreed. On Sunday, as I was driving home, he

> > developed a

> > fever, and by Monday it was apparent that he was ready to go. He

had

> > waited

> > until he knew I was on my way home, but I know the struggle was

> > getting too

> > much for him. On Monday I was able to tell him that if it was time

> > for him to

> > go, that I and the kids would be all right and that I was sure we

> > would see

> > each other again someday. I told him how much I loved him and

asked

> > if he

> > understood what I was saying. He said he did. Again last night

when

> > he was

> > obviously in bad shape, I told him the same thing again, and again

> > he

> > indicated he understood. At 4 AM this morning, I awakened to find

> > his body

> > was limp but his body was warm, and there was color in his face.

> > While my

> > daughter and I watched, the color left him, and it was obvious he

> > was gone.

> > We have sent his brain tissue off to Dr. Benneroch at Mayo for his

> > Shy-Drager

> > study, and Ken is finally released from this dreadful disease.

> > You have all become my closest confidants, and I cannot

tell

> > you how

> > grateful I am for all the support you have given me. When I can

get

> > past the

> > next few days, I shall send on some of the pictures I took at

> > Yosemite. My

> > only regret is that Ken was unable to share this trip he so

> > generously

> > allowed me to have before he left me.

> > Love to all of you my good good friends,

> > Barbara

>

> ________________________________________________________________

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