Re: (unknown)

[Guest guest]

BEST wishes on the trip -Take care . Holding you in my prayers always..

LOVE, grandmomBEV

Take pictures------------:) DUH!!

Re: (unknown)

Hi ,

It is nice to meet you. Welcome to the list, I hope you find it helpful and

supportive (we try). Myself, I have 2 teens, age 17 wcf, and Nick

age 19 no cf. is doing pretty well, she is scheduled for sinus

surgery for July 25, but I just found out we are getting new insurance so it

might delay the surgery a little. I hope not. And on Monday she is leaving

for Paris, a school trip with her German club. She'll be traveling around

Europe for 17 days. Sounds like fun?!

with love from from Orange Ca

PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

--------------------------------------------------

[Guest guest]

,

My daughter is schedule to have sinus surgery was on July 25 but just this

week changed it for July 27. This will be her second surgery. She will be 9

on the 21 of July. Deb

[Guest guest]

Hi Bev,

I hope I am not being too greedy, but could you send me a copy of the Bill

Nye tape for my 9 year old Joe with CF? If you have anything else that

would be good for his age I would greatly appreciate that too! Thank you,

thank you, thank you!!!

Wende Sinnaeve

785 Tricia Place

Coos Bay, OR 97420

(unknown)

>

>

>

> Hello to all...

>

> My son was diagnosed with highdrops in utero. I was told that day if

> he survived through birth I may get to hold him in my arms but only

> if I had him vaginally. Today, almost six weeks later I have an

> AMAZING boy named .

>

> five days after birth surgeons determined during exploratory surgery

> that he had meconium ilus and gave him a ostomy. We were also told

> at that time 99.9% sure he had cystic fibrosis. Both parents carried

> genotype delta F 508. I have alot of infomation on cf research

> etc.etc., but I want to understand more about life at home and

> working with ? I want to be realistic about our future

> together and fighting this illness. Thank you in advance for sharing

> your trials, heart, and your family.

>

> Sincerely,

>

> Crystal

>

> crystalwood1999@...

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

WELCOME SUE. I too, live in FL> In Orla ndo.call me anytime

1-,or if in town here

BEST to you.You will get many responses here.

LOVE & HUGS, grandmomBEV

(unknown)

Hello,

I am new to the CFparents.My name is sue We live in Florida and we have 3

kids boy 2 girls my son has CF he is 7 years old.I am not new to CF my

sister also had it she past at the age of 14,that was about 11 years ago.I

was 20 when my son was born my husband was 19.We have been lucky so far he

has been pretty healthy.The last time he was in the hospital he was 8 months

old and that was because he had RSV intestinal flu.We have had our ups and

down.He also has ADHD.He is also very small for his age.He is 7 and weighs

38lbs.Our daughters are 5 years and 2 years of age.They are still trying to

understand why he needs treatments and medications all the time.This is very

hard to explain to young children.So we try to let them help with some of

his treatments but now my son is getting older he doesn't want the girls

bothering him.So now he is doing his treatments and meds himself with

supervision.If anyone is dealing with CF and ADHD please e-mail me.We are

having medication problems for is ADHD.I would like to hear any suggestions.

Thanks.

Sue

[Guest guest]

,

get plenty of rest girl. I think the surgery is called a

sphincteroplasty. I've had something similar done and actually, the odds

of it going well has gotten better since I had it done in 1993. At the

time I had it done, only 150 had ever been performed in the US. I prayed

a lot! It can help if it's done right. Mine gave me five years of no

problems with the pancreas. It was soooo nice. I had it done on both

ducts as mine a divided into two separate ducts, not ones that join

together, plus they are too narrow and too close together. Any major

surgery has a big chance of severe complications, but sometimes, it's

worth the try. You're the one who has to make the decision though. I'll

pray for you either way. Hope better days are coming for you. Also, the

enzymes can help with the pain too. Until my last attack, the enzymes

were keeping me pain free as long as I took them every time I ate.

Kimber

--

Kimber

hominid2@...

California State Chapter Representative

Pancreatitis Association, International

[Guest guest]

--- Kimber wrote:

> ,

> get plenty of rest girl. I think the surgery is

> called a

> sphincteroplasty. I've had something similar done

> and actually, the odds

> of it going well has gotten better since I had it

> done in 1993. At the

> time I had it done, only 150 had ever been performed

> in the US. I prayed

> a lot! It can help if it's done right. Mine gave me

> five years of no

> problems with the pancreas. It was soooo nice. I had

> it done on both

> ducts as mine a divided into two separate ducts, not

> ones that join

> together, plus they are too narrow and too close

> together. Any major

> surgery has a big chance of severe complications,

> but sometimes, it's

> worth the try. You're the one who has to make the

> decision though. I'll

> pray for you either way. Hope better days are coming

> for you. Also, the

> enzymes can help with the pain too. Until my last

> attack, the enzymes

> were keeping me pain free as long as I took them

> every time I ate.

> Kimber

>

> --

> Kimber

>

Hi Kimber, thanks for the info, I thought thats what

it was called but I wasn't sure. I hope the enzymes

will work for me becuase I am so scared of another

procedure! but if I have to do it, then I'll go for

it, my doctors are very understanding and that helps,

he told me he's determined to get me feeling good

again,so that made me feel confidedent that I will

feel good again someday!

thanks again, Luv, :}

__________________________________________________

[Guest guest]

Hello,

my name is ruth boyd, i live in illinois, i had

the procedure to open up the small duct in my

pancreas, they put in a stint and left it in for a

week then took it out, they did it using the ERCP, i

only have the small duct i was born without the main

duct to my pancreas i was recently diagnosed with

pancreatitis after being sick for 6 months, i still

have severe pain and i still vomit alot even with the

meds that i am on. i was very sick for a few days

after the procedure, and i have severe pain every time

i eat.

--- tan_1500@... wrote:

> Hi everyone, hope you all are well latley, Ive been

> trying to keep up

> with the posts even though I'm so busy with all

> these doctors, I

> usually get a few minutes in the morning to myself,

> and its the best

> time of day for me painwise. sorry I haven't made it

> to the chats in

> awhile, I've been passing out around 8:00 or so at

> night, I'm very

> exausted.I went to the GI doc. today, the one who

> did the

> sphincterotomy on my bile duct{the choledochal cyst}

> and I told him

> I;m having more pain and nausea than ever before,I'm

> running fevers

> all the time and I can't eat without going to the

> bathroom. He told

> me that I do have a narrowing of my pancreatic duct

> that he was

> concerned about, and that he could do a procedure to

> cut the duct and

> open it,{does anyone know what this is called?I

> forgot} but it it

> very risky with a 30% chance of severe

> complications,{scary!} so what

> he wants to do first is try the pancreatic enzymes,

> and because my

> amylase keeps rising, he told me to go to the ER

> when I have pain to

> have blood drawn, so he can see how high the levels

> are rising. he

> also did bloodwork today on some kind of test that

> shows if I have a

> tumor{tumor marker test?}, so I find out next week

> what those show.

> well gotta go for now, need sleep! thanks for

> listening!

> Luv

>

>

__________________________________________________

[Guest guest]

--- mira crocker wrote:

> Hi Everyone,I did not write for 4 weeks I was away

> on

> holiday,but I did

> read all the posts everyday,.I went to ER on 26th of

> july with very

> strong pain in my belly,the pain was different from

> the usual pancreas

> pain as I know it,. I also sew blood in my stools.

>

>

Hi Mira, do you have a regular doctor that you see? if

so I would get an appt. soon, dark bloody stools could

mean internal bleeding, my mother had this and she

went to the E.R. and ended up having half her colon

removed because it was perferated, I'm not trying to

scare you, it could be something less seriuos but,I

would get it checked right away. good luck, and keep

us informed, if your pain or bleeding gets worse go

back to the ER and tell them you want some testing

done!

:}

>

>

>

>

____________________________________________________________

>

[Guest guest]

Talk to us. Who's your doc? What kind of surgery did you have? How much

bypassed? Any chance of staple line disruption? How much protein supps do you

get in? Water? Water is a nuisance, but still critical forever. (I hate that

rule).

Are you eating wild & crazy or is the wt coming back without much help from you?

Thanks,

Puyallup, WA (state)

Website: www.vitalady.com

To check out PayPal:

https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com

(unknown)

> HELLO,

>

> ITS BEEN GOING ON 3 YEARS FOR MEWITH THE GASTRIC-BYPASS LOST ABOUT

> 100PDS. NOW I HAVE GAINED BACK ABOUT 30 CAN ANYONE HELP ME I AM VER

> DEPRESSED ABOUT THIS.

> THANKS,

> DEBBIE

>

>

> Homepage: http://groups.yahoo.com/group/Graduate-OSSG

>

> Unsubscribe: mailto:Graduate-OSSG-unsubscribe

>

>

>

>

>

[Guest guest]

I would like to hear your answers too Viatalady! :-)

Jillene :-)

[Guest guest]

I would like to hear your answers too Viatalady! :-)

Jillene :-)

[Guest guest]

Want it public or private?

Thanks,

Puyallup, WA (state)

Website: www.vitalady.com

To check out PayPal:

https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com

(unknown)

>

> I hope I have permission to post this because I'm not a year yet, but our

> doctors at SSF - Kaiser would like help from the post ops, especially the

> graduates with RNY Proximal with the following questions:

>

> 1. How much calories do you consume daily or is this not considered.

>

> 2. If your food is all protein, how much protein drink do you consume?

> Also, what types of protein fresh food do you eat.

>

> 3. Vitamins (I know Vitalady can help here <grin>, but remember it's only

> for RNY Proximal patients. Also, do you still take vitamin B12?

>

> 4. How often do you take tests?

>

> Thanks folks,

>

> C.

> San Ramon, CA

> 112 lbs.

>

>

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

> Homepage: http://groups.yahoo.com/group/Graduate-OSSG

>

> Unsubscribe: mailto:Graduate-OSSG-unsubscribe

>

>

>

>

>

[Guest guest]

Want it public or private?

Thanks,

Puyallup, WA (state)

Website: www.vitalady.com

To check out PayPal:

https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com

(unknown)

>

> I hope I have permission to post this because I'm not a year yet, but our

> doctors at SSF - Kaiser would like help from the post ops, especially the

> graduates with RNY Proximal with the following questions:

>

> 1. How much calories do you consume daily or is this not considered.

>

> 2. If your food is all protein, how much protein drink do you consume?

> Also, what types of protein fresh food do you eat.

>

> 3. Vitamins (I know Vitalady can help here <grin>, but remember it's only

> for RNY Proximal patients. Also, do you still take vitamin B12?

>

> 4. How often do you take tests?

>

> Thanks folks,

>

> C.

> San Ramon, CA

> 112 lbs.

>

>

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

> Homepage: http://groups.yahoo.com/group/Graduate-OSSG

>

> Unsubscribe: mailto:Graduate-OSSG-unsubscribe

>

>

>

>

>

[Guest guest]

In a message dated 8/6/2001 8:04:58 PM Eastern Daylight Time,

mary_cortez@... writes:

Hi - I am a proximal RNY - 20mos out...

> 1. How much calories do you consume daily or is this not considered.

I have yet to count calories.

>

> 2. If your food is all protein, how much protein drink do you consume?

> Also, what types of protein fresh food do you eat.

>

My food is mostly protein - carbs come in with crackers (to put my

tuna or egg salad on), the occasional sugar free cookie. I drink one 27 1/2

gram shake a day and eat one 20 - 30 gm bar per day. I eat beef, chicken,

fish, cheese...I use egg noodles when I want pasta - easier going down and a

little more protein than regular noodles.

> 3. Vitamins (I know Vitalady can help here <grin>, but remember it's only

> for RNY Proximal patients. Also, do you still take vitamin B12?

I take 2 children's chewables, 1 sublingual B-12 (1000mcg), 1

sublingual biotin(500mcg), 1 dry E chewable (400IU), chewable C w/ carbonyl

iron (500 C & 50 mg of iron twice a day), chewable calcium citrate twice a

day (500mg citrate, 200 IU Vitamin D, 250 mg Magnesium) - I think that is it!

>

> 4. How often do you take tests?

Every six months - it is time for me to do it again...

Marjie Wassermann

12/9/99

Starting weight 296

155lbs lost (I am less1/2 the woman I once was!!!)

BMI: pre op - 62 post op - 26 (yeah!)

Dr. Colberg

Jefferson University Hospital, Philadelphia

TT & Brachioplasty 6/19/01 Dr. at Jefferson

www.marjiespage.homestead.com/marjiespage.html

[Guest guest]

In a message dated 8/6/2001 8:04:58 PM Eastern Daylight Time,

mary_cortez@... writes:

Hi - I am a proximal RNY - 20mos out...

> 1. How much calories do you consume daily or is this not considered.

I have yet to count calories.

>

> 2. If your food is all protein, how much protein drink do you consume?

> Also, what types of protein fresh food do you eat.

>

My food is mostly protein - carbs come in with crackers (to put my

tuna or egg salad on), the occasional sugar free cookie. I drink one 27 1/2

gram shake a day and eat one 20 - 30 gm bar per day. I eat beef, chicken,

fish, cheese...I use egg noodles when I want pasta - easier going down and a

little more protein than regular noodles.

> 3. Vitamins (I know Vitalady can help here <grin>, but remember it's only

> for RNY Proximal patients. Also, do you still take vitamin B12?

I take 2 children's chewables, 1 sublingual B-12 (1000mcg), 1

sublingual biotin(500mcg), 1 dry E chewable (400IU), chewable C w/ carbonyl

iron (500 C & 50 mg of iron twice a day), chewable calcium citrate twice a

day (500mg citrate, 200 IU Vitamin D, 250 mg Magnesium) - I think that is it!

>

> 4. How often do you take tests?

Every six months - it is time for me to do it again...

Marjie Wassermann

12/9/99

Starting weight 296

155lbs lost (I am less1/2 the woman I once was!!!)

BMI: pre op - 62 post op - 26 (yeah!)

Dr. Colberg

Jefferson University Hospital, Philadelphia

TT & Brachioplasty 6/19/01 Dr. at Jefferson

www.marjiespage.homestead.com/marjiespage.html

[Guest guest]

In a message dated 8/6/2001 8:04:58 PM Eastern Daylight Time,

mary_cortez@... writes:

Hi - I am a proximal RNY - 20mos out...

> 1. How much calories do you consume daily or is this not considered.

I have yet to count calories.

>

> 2. If your food is all protein, how much protein drink do you consume?

> Also, what types of protein fresh food do you eat.

>

My food is mostly protein - carbs come in with crackers (to put my

tuna or egg salad on), the occasional sugar free cookie. I drink one 27 1/2

gram shake a day and eat one 20 - 30 gm bar per day. I eat beef, chicken,

fish, cheese...I use egg noodles when I want pasta - easier going down and a

little more protein than regular noodles.

> 3. Vitamins (I know Vitalady can help here <grin>, but remember it's only

> for RNY Proximal patients. Also, do you still take vitamin B12?

I take 2 children's chewables, 1 sublingual B-12 (1000mcg), 1

sublingual biotin(500mcg), 1 dry E chewable (400IU), chewable C w/ carbonyl

iron (500 C & 50 mg of iron twice a day), chewable calcium citrate twice a

day (500mg citrate, 200 IU Vitamin D, 250 mg Magnesium) - I think that is it!

>

> 4. How often do you take tests?

Every six months - it is time for me to do it again...

Marjie Wassermann

12/9/99

Starting weight 296

155lbs lost (I am less1/2 the woman I once was!!!)

BMI: pre op - 62 post op - 26 (yeah!)

Dr. Colberg

Jefferson University Hospital, Philadelphia

TT & Brachioplasty 6/19/01 Dr. at Jefferson

www.marjiespage.homestead.com/marjiespage.html

[Guest guest]

In a message dated 08/06/2001 5:05:37 PM Pacific Daylight Time,

mary_cortez@... writes:

> I hope I have permission to post this because I'm not a year yet, but our

> doctors at SSF - Kaiser would like help from the post ops, especially the

> graduates with RNY Proximal with the following questions:

>

> 1. How much calories do you consume daily or is this not considered.

I do not count calories or anything else . . . I only eat when I am

physically hungry, and eat only what my body craves most. Takes a while to

listen to ones body over ones head. No more diets or free for all's cause

tomorrow there's another new diet to start.

>

> 2. If your food is all protein, how much protein drink do you consume?

> Also, what types of protein fresh food do you eat.

While I was losing mostly protein felt good . . . now I am balanced . . .

> 3. Vitamins (I know Vitalady can help here <grin>, but remember it's

only

> for RNY Proximal patients. Also, do you still take vitamin B12?

I take potassium, Iron, B12, calcium and a multivitamin.

>

> 4. How often do you take tests?

Every 6 months or so.

) Vicki IN Ca

Very healthy and happy too!

> Thanks folks,

>

> C.

> San Ramon, CA

> 112 lbs.

[Guest guest]

(unknown)

>

>I hope I have permission to post this because I'm not a year yet, but our

>doctors at SSF - Kaiser would like help from the post ops, especially the

>graduates with RNY Proximal with the following questions:

>

>1. How much calories do you consume daily or is this not considered. Too

many about 2,000 - 2,500

>

>2. If your food is all protein, how much protein drink do you consume? Not

enough

> Also, what types of protein fresh food do you eat.Chicken, turkey

hamburger

>

>3. Vitamins (I know Vitalady can help here <grin>, but remember it's

only

>for RNY Proximal patients. Also, do you still take vitamin B12? Multi

vitiamin with iron, B 12 shot once a month calcium 1500 mg

>

>4. How often do you take tests? every 6 months

>

>Thanks folks,

>

> C.

>San Ramon, CA

>112 lbs.

>

>

>

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

>Homepage: http://groups.yahoo.com/group/Graduate-OSSG

>

>Unsubscribe: mailto:Graduate-OSSG-unsubscribe

>

>

>

>

>

[Guest guest]

(unknown)

>

>I hope I have permission to post this because I'm not a year yet, but our

>doctors at SSF - Kaiser would like help from the post ops, especially the

>graduates with RNY Proximal with the following questions:

>

>1. How much calories do you consume daily or is this not considered. Too

many about 2,000 - 2,500

>

>2. If your food is all protein, how much protein drink do you consume? Not

enough

> Also, what types of protein fresh food do you eat.Chicken, turkey

hamburger

>

>3. Vitamins (I know Vitalady can help here <grin>, but remember it's

only

>for RNY Proximal patients. Also, do you still take vitamin B12? Multi

vitiamin with iron, B 12 shot once a month calcium 1500 mg

>

>4. How often do you take tests? every 6 months

>

>Thanks folks,

>

> C.

>San Ramon, CA

>112 lbs.

>

>

>

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

>Homepage: http://groups.yahoo.com/group/Graduate-OSSG

>

>Unsubscribe: mailto:Graduate-OSSG-unsubscribe

>

>

>

>

>

[Guest guest]

(unknown)

>

>I hope I have permission to post this because I'm not a year yet, but our

>doctors at SSF - Kaiser would like help from the post ops, especially the

>graduates with RNY Proximal with the following questions:

>

>1. How much calories do you consume daily or is this not considered. Too

many about 2,000 - 2,500

>

>2. If your food is all protein, how much protein drink do you consume? Not

enough

> Also, what types of protein fresh food do you eat.Chicken, turkey

hamburger

>

>3. Vitamins (I know Vitalady can help here <grin>, but remember it's

only

>for RNY Proximal patients. Also, do you still take vitamin B12? Multi

vitiamin with iron, B 12 shot once a month calcium 1500 mg

>

>4. How often do you take tests? every 6 months

>

>Thanks folks,

>

> C.

>San Ramon, CA

>112 lbs.

>

>

>

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

>Homepage: http://groups.yahoo.com/group/Graduate-OSSG

>

>Unsubscribe: mailto:Graduate-OSSG-unsubscribe

>

>

>

>

>

[Guest guest]

It has been published in the RSS articles available from the Magic

Foundation.

I have one here entitled " Growth Hormone Treatment of -Silver

Syndrome " (article 126A from Magic) and Dr. Stanhope is one of the 3

authors.

It states within the introduction: " The aetiology of -Silver Syndrome

is unknown and the condition is sporadic. The incidence is between 1:50,000

and 1:100,000 live births. "

Hope this is what you were asking. It seems fairly current, the date of

publication is 1998.

Cheryl V.

(unknown)

>

>

>Hi all,

>This has probably been asked and answered before, but does anyone

>have the figures for the incidence of RSS per live births in the

>population.

>ne

>

>

>

>

>

[Guest guest]

Pattie- (and all)

I appreciate your thoughts in this email b/c it

pinpoints exactly what we are going through with my

two year old son, Dominic. Being first time parents,

I am not sure which of Dominic's behaviors are

" normal " and which are RSS related, especially when it

comes to eating. I am also trying to sort out how to

proceed, which advice to take, who to listen to, etc.

in regard to this eating issue. Dominic has been

taking periactin for about 5 months and mealtimes

continue to be stressful. Basically we distract him

or bargain with him to eat and until this past week I

thought this was a good thing. However, now after

reading the email responses I am afraid we are doing

more harm than good. I really wish my husband would

participate in this listserve b/c he could help me

better make decisions about Dominic.

I am sorry about this dreadful email, I think I am

starting to get really worried about the uncertain

future with Dominic. Or maybe I am just having a bad

day. I am so thankful for this group b/c I know you

all know how I feel!

F. (mom to Dominic, 23 months, 16 lbs, RSS)

--- pattie_warren@... wrote:

> Wow, again there is so much to talk about and it all

> goes in so many

> directions. I really empathize with those of you

> who have 2 year

> olds and are trying to weed out RSS behaviors from

> normal 2 year old

> activities. My RSS child is 6 1/2, but I have a 2

> 1/2 year old that

> is all over the place. He never wants to eat from

> day to day, he's

> picky, moody, screams when he doesn't get his way,

> drops to the

> ground several times a day, and is overall a cute

> little boy that

> tries my patience. It is so hard to figure out with

> a non-RSS kid

> whether this is a phase, personality trait, or bad

> behavior. By the

> way my two year old is not in a high chair, but

> Jonathon (RSS) had to

> be in one because he couldn't reach the table, again

> he was not

> tramatized.

>

> I also wanted to address the issue of Periactin. I

> have said for the

> last couple of years that Jonathon eats great, but

> Dr. H has

> commented that they really don't know why Periactin

> works. She has

> told me that some parents don't see an appetite

> increase, yet the kid

> still gains weight better. It might be possible

> that Periactin is

> not just a stimulant but somehow helps the body gain

> better. I think

> that Periactin is a standard part of Dr. H's

> treatment, so she is not

> that concerned with whether the parent " thinks " the

> kid eats well or

> not. These kids are skinny and as far as she is

> concerned, Periactin

> helps any RSS kid gain so it can't be bad; for a

> good or poor eater.

>

> My son does not take Periactin because his appetite

> & weight

> are " acceptable " , his growth is " wonderful " , and he

> is an obedient,

> fun loving boy when NOT taking it. When he was on

> it (1 1/2 years)

> he broke down daily, stomped off all the time, and

> was uncontrollable

> with his anger and screaming (not at all like him).

> I have heard

> that not all kids are like this. My biggest concern

> was that Dr. H

> has said that Periactin works within the brain to

> alter or stimulate

> certain brain chemistry. We have a lot of

> depression and possible bi

> polar activity in our immediate family and we were

> not comfortable

> with throwing another unneeded stimulant in the

> brain mix! As long

> as it is not needed, we will not use it.

>

> Sorry this is so long again....

>

>

>

>

__________________________________________________

[Guest guest]

- Nate is a little older and his appetite is ok, not great, but if

it's something he likes, he'll usually eat it. We have had the occasionally

bad days or even more common, bad meals, but usually he makes up for it.

Breakfast is his best meal, so we try to cram food in. I really struggle to

not get too worked up if he won't eat a meal or two, because it just makes

him less likely to eat anything. We are currently trying very hard not to let

him use food as way of coercing us, since he knows we want him to eat. Having

a twin to compare him to, makes life a little easier. We see Sam- who was

always a great eater until he was about 1 1/2- being picky and not eating at

some meals and so we know that it is part of being an almost 3-yr old. I know

it's very hard, especially if Dominic doesn't eat well most of the time, but

if you can, try to tell yourself that he'll make up for it and it's not worth

the stress you'll be putting both you and him thru if you keep trying to

cajole or what everelse you try to do to get him to eat. We do try to bribe

him sometimes- ie if he eats a bite of chicken he gets a french fry, maybe

that's not good either, but it will usually get him started eating and then

he may start to eat without our " help " . Hope this helps, if there's any other

advice I can give-for what it's worth- just yell, - Liz-Mom of Nate(?RSS)and

Sam-35 month old twins and Arianna-16 months

[Guest guest]

In a message dated 8/14/01 2:57:28 PM Eastern Daylight Time,

hotkitten81@... writes:

>

>

> Mark,

> you should follow your heart.If you feel strongly

> about this then pursue it without you mothers knwledge

> until you gather all the facts, then you could inform

> her about it if you feel it is a need to know thing

> for her, if i thought i had a sibling out there i

> would like to know about them as i am an only child.

> ruth

>

>

>

Dear Mark, I agree with Ruth. I would pursue it all the way even to the

point of having a DNA test done on the both of you. I think it would be a

wonderful thing to have a brother and find out all about him and if you don't

see eye to eye on life then let him go. How can you stand this? It is

amazing!!!! I would be jumping out of my skin about now. I would have to

know him. Good luck and let us know what your decision is. Love, Shirley

[Guest guest]

Marelou

Who is suggesting RSS to you?? I wish I was going to be at Sick Kids when you

go. I was down there yesterday. It's really mostly a visual kind of diagnosis.

For me, at Sick Kids, they ruled out every other kind of disorder or other

medical problem, Adam had 2 chromosome testing done (that took a number of

months to come back). Sick Kids has the ability to test your blood, your

husband's and your daughter's to see if there is a chromosome change. It's

called (oh help somebody--UPD#7--if I got the letters wrong, someone will

correct me). But that is only in 10% of the RSS cases. My son does not have it

(ie. that change in his chromosome, basically 10% of RSS kids have 2 #7

chromosomes from their mother and none from the father). but like I said, Adam

doesn't have that (we were part of the original study group that found that

chromosome thing).

But what I don't understand is why you haven't been referred to an

endocrinologist. Write this down for when you go in Sept. Ask your neurologist

why he hasn't referred you to endocrinology. Tell him you know of an RSS boy who

lives in Toronto and he sees Dr. Denis Daneman. Ask to see him. He'll look over

your daughter's file and be able to tell if it's RSS or not. Genetics can't tell

with certainty.

Good luck and please let me know if I can do anything else. I am relatively

close to you and I would love to help any way I can. Even a telephone

conversation isn't that expensive since we are in the same province.

Any other questions? Please feel free to ask.

Take care

Debby

Marelou Daley wrote:

> Hi ,

>

> I was just wondering if anyone can tell me how RSS is diagnosed is it

> through genetic's , neorology , blood work what ?

> We are going crazy visiting all of these doctor's who think this is what our

> daughter has . Is there a test that is yes or no .

> Maybe we just don't want to see it , at first we thought it was a

> possibility , but she seem's to be doing so well , some minor development

> problem's , feeding , ect. Some of your letters show much more difficulties

> for your children , we have some similarities but not to your degree . I

> hope I don't sound rude or insensative . We just want to get on with our

> lives and enjoy watching her grow and develope . I myself am only 4 ft. 8

> 3/4 inches . so how much is just hereditary

> We return to Toronto Sick Kids in September for an eeg an a SSPD then back

> to genetics (2nd app.)

> Thanks for Your Input Marelou mother of Hanna 22 mnths 18lbs beautiful red

> hair thats kind of wild .

>

> _________________________________________________________________

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