No Subject

[Guest guest]

,

I can't wear much except cotton, rayon, sometimes silk. (Oh, yeah, like I

have a ton of it in my closet.) But generally, I need to dress in layers and

clothing that breaths. Polyester is out. Wool is out. I spend half my life

putting on layers and slowly peeling off layers depending on where I am and

the temperature. Dry cleaning solvents honestly don't bother me. Which

is odd, I think. Does airing the stuff for a day or two, before wearing it,

help?

Esther

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

[Guest guest]

,

I don't know about dry-cleaned clothing because I'm afraid to even try that

(!) but I've noticed that just shopping for clothes drives my skin and eyes

nuts. Whatever is on the new clothes is something my system can't hack.

I'm allergic to wool, and it does weird things to my skin too.

Kerry

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

[Guest guest]

Thanks for the suggestion, esther. Maybe I will try taking the dry cleaning out

of the plastic bag AND out of the closet, and letting it hang by an open window

for a while.

Ive had to get rid of one wool suit because it was causng my face to itch

uncontrollably (which was reasonably expensive), so i wasn't too happy about

that-- actually im not happy about the entire wool/drycleaning rosacea situation

because if I have to replace all my winter suits with something other than wool

i will (a) go broke and ( FREEZE. Assuming I have to do it, and overcome (a),

( could be solved too--i suppose i could get army surplus polypropylene lovely

grey long underwear to go under my non-wool suits in winter. Lovely. Move over

's Secret-- here comes the army grey. Wonder what polypropylene will do

to my skin. I assume they don't design military underwear with rosacea sufferers

in mind. :-)

-

---- you wrote:

> ,

> I can't wear much except cotton, rayon, sometimes silk. (Oh, yeah, like I

> have a ton of it in my closet.) But generally, I need to dress in layers and

> clothing that breaths. Polyester is out. Wool is out. I spend half my life

> putting on layers and slowly peeling off layers depending on where I am and

> the temperature. Dry cleaning solvents honestly don't bother me. Which

> is odd, I think. Does airing the stuff for a day or two, before wearing it,

> help?

> Esther

>

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

Get the Latest News at CNN Interactive: http://CNN.com

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

[Guest guest]

Hi ,

A herbal tincture is basically just an alcohol based solution containing all the

extractable elements from the raw herb. I have found these to be more effective

than taking herbs in dried capsule form.

SS

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

[Guest guest]

In a message dated 04/28/1999 3:35:55 AM !!!First Boot!!!, JaGorbe@...

writes:

> Dairy products are out, right? And citrus fruit, tomatoes, all alcohol or

> just red wine?

Personally, dairy products never bother me. It only takes a sip of red wine

to cause almost immediate damage. I now avoid all wine, and things like gin.

I think I also have a problem with chocolate and/or peanut butter. Spicy

food is out, including anything made with curry, cayenne pepper, regular

black pepper. I think shellfish bother me a bit, but I've never had an

extreme reaction from shellfish (however even one red blotch is enough to get

me looking for the trigger). Don't take gingko biloba as a supplement, I

think it has cayenne pepper in it. Some forms of the herb goldenseal have it

too, so be careful of that! I know some people have a reaction to bananas

and yogurt but I never have. I'm not even sure I'm bothered by tomatoes and

citrus.

Diane

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

[Guest guest]

In a message dated 4/28/99 6:13:03 PM, Enzanni writes:

<<Don't take gingko biloba as a supplement, I think it has cayenne pepper in

it. >>

Are you sure? I've been taking it 3x a day for Reynauds condition and my

memory. Believe me, I need it for my memory, so I would not like to stop

taking this.

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

[Guest guest]

The label on the Ginkgo Biloba should tell you whether or not cayenne has been

added. I am taking " Doctor's Best " Ginkgo, and it does not contain

capsaicin/cayenne. Sometimes this product is added to an herb or herb mixture

because it's theorized that cayenne boosts the effectiveness of the herb(s).

Carol

JaGorbe@... wrote:

> In a message dated 4/28/99 6:13:03 PM, Enzanni writes:

>

> <<Don't take gingko biloba as a supplement, I think it has cayenne pepper in

> it. >>

>

> Are you sure? I've been taking it 3x a day for Reynauds condition and my

> memory. Believe me, I need it for my memory, so I would not like to stop

> taking this.

>

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

> Tired of waiting for your stock quotes and charts to load?

> StockMaster is super-fast for quotes, charts, news, and portfolios.

> Markets don't wait, why should you? http://clickhere./click/69

>

>

[Guest guest]

http://www.ozemail.com.au/~pascoedj/rosacea/toc.html

i hope this is the right place..it says at the bottom of the page that you

can sign up

for the email support group

nicki

ALI KOCYIGIT wrote:

> help

>

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

> !! FREE !! DOWNLOAD NOW !!

> Animated Interactive Cartoon Character for Windows.

> http://clickhere./click/242

>

>

[Guest guest]

hi marc...

i did go from tetracycline to minocycline...the derm said it would help with the

redness.....it did help with the blemishes..but i don't know about the redness..

nicki

mdcantor@... wrote:

> Hello Fellow Red Facers,

>

> I just signed up for the group and I had a general question. Has anyone ever

tried the herbal remedies? Specifically, those offered by

http://www.herb-doc.com/acne.htm Also, has anyone ever switched from

Tetracycline to Erythromycin and seen a difference?

>

> Any thoughts would be greatly appreciated. And to all, best of luck in your

pursuit for better skin.

>

> Marc

>

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

> !! FREE !! DOWNLOAD NOW !!

> Animated Interactive Cartoon Character for Windows.

> http://clickhere./click/242

>

>

[Guest guest]

Hi Marc.

I am searching for herbal stuff all the time but there isn't much of anything

where I live and I absolutely do not trust the people who sell herbs on the

internet. They could be sending you anything. Be careful.

Oakmoss

<pid16403.1999.May.12.8:58.659874.egroups> wrote:

Original Article: /list/rosacea-support/?start=4278

> Hello Fellow Red Facers,

>

> I just signed up for the group and I had a general question. Has anyone ever

tried the herbal remedies? Specifically, those offered by

http://www.herb-doc.com/acne.htm

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

[Guest guest]

I've done the same - gone from tetracycline to minocycline, as my derm thought

he could get even better results. It's funny, after having bad skin for so

long, when my skin improved (but was not yet perfect) I was quite content! It

was my derm who thought we

could do better! Having rosacea for years, I guess I started to lower my

expectations and hopes for ever having normal skin again.

Anyways, I've yet to see any difference, but I've been inconsistent with my

lotions this past month, so it's hard to say either way. It definitely hasn't

worsened anything though..

" =^.^= " wrote:

> hi marc...

>

> i did go from tetracycline to minocycline...the derm said it would help with

the redness.....it did help with the blemishes..but i don't know about the

redness..

>

> nicki

>

> mdcantor@... wrote:

>

> > Hello Fellow Red Facers,

> >

> > I just signed up for the group and I had a general question. Has anyone

ever tried the herbal remedies? Specifically, those offered by

http://www.herb-doc.com/acne.htm Also, has anyone ever switched from

Tetracycline to Erythromycin and seen a difference?

> >

> > Any thoughts would be greatly appreciated. And to all, best of luck in your

pursuit for better skin.

> >

> > Marc

> >

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

> > !! FREE !! DOWNLOAD NOW !!

> > Animated Interactive Cartoon Character for Windows.

> > http://clickhere./click/242

> >

> >

[Guest guest]

Hi,

I was never able to take tetracycline, but I can certainly tell you that

oral erythromycin did absolutely nothing but irritate my stomach and

I was on it for about a year. I just began taking an oral sulpha

antibiotic. We'll see how that goes.

Sherry

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

[Guest guest]

I just have to say how great this e-mail support group is. I keep reading

about periactin. My daughter is 4 yrs 22lbs,on gh for about 2yrs and g-tube

in last Sept.

growth and weight has just been ok. My doctor does not really feel that

strong about periactin. We tried it about 2yrs ago but I really didnt see a

great change in her. I know Dr H believes there is a formula about giving

periactin to RSS kids. Would love to hear some response on moods swings and

any other positive or negative reactions to periactin.

Also she is only feed through the night and we have started to give her MCT

oil in her feeds, any one ever used this before.

Just want to thank everyone once again for being so supportive and

informative.

BK

[Guest guest]

Hi BK

Our son is 26 months old ( 21 1/4 pounds and about 32 " tall) and is on

periactin. It has worked pretty good so far. Since he has been on it he has

gained over 7 pounds in the past year. Without out it he was on a curve to

gain only about 2 pounds. So we believe it has been a big help. Besides

helping him to gain weight, it is also training him to eat at regular

intervals.

I believe Inga Huhes can answer questions about MCT Oil. We used to put

canola oil in some of 's food but he has transitioned to mostly regular

food so it is hard to add oil to anything. We add Kayro syrup to some foods

and Scandi Cal to others.

Hope this helps.

Ken M

----------

>From: BKAY0405@...

>To: RSS-Supportonelist

>Subject: Fwd: No Subject

>Date: Fri, Jun 25, 1999, 10:48 PM

>

> I just have to say how great this e-mail support group is. I keep reading

> about periactin. My daughter is 4 yrs 22lbs,on gh for about 2yrs and g-tube

> in last Sept.

> growth and weight has just been ok. My doctor does not really feel that

> strong about periactin. We tried it about 2yrs ago but I really didnt see a

> great change in her. I know Dr H believes there is a formula about giving

> periactin to RSS kids. Would love to hear some response on moods swings and

> any other positive or negative reactions to periactin.

>

> Also she is only feed through the night and we have started to give her MCT

> oil in her feeds, any one ever used this before.

>

> Just want to thank everyone once again for being so supportive and

> informative.

>

> BK

>

[Guest guest]

, my son has a g-tube and has been fed only at night, too. He has

used Peptamen because he has a milk allergy and could not use Pediasure. He

is older (11 on 7/2!!!) and we have not used the pump for about 4 months

now. We have almost always given him 2 cans/night (averaging about 500cc).

We found that he was much better at eating during the day if we kept the

rate as low as possible, but still being able to help him gain weight and

maintain his ketone level. He has had ketonic hypoglycemia, but has

outgrown it. If I can help any more, please email me!

Jodi

No Subject

>From: BKAY0405@...

>

>Hi to all: I just have to say once again how great this support group is. I

>cant wait to get my e-mails.

>

>I have a question for g-tube parents- my daughter tte is 4yrs 22lbs

and

>has a g-tube. We only feed her through the night (she only got her tube

last

>Sept.) I was just wondering if any other kids are only fed at night, how

much

>pedisure (or whatever else they get) they get per night.

>

>I have heard about Boost and wonder if you could put that through the tube

>and if there is something else I could use instead of pedisure to gain

>calories.

>

>Also very amazing about the " poop " thing I just felt she was so little that

>everything else just looks big....

>

>It great to see ages and weights of our kids now I feel that maybe her

weight

>is not too far off from other 4yr olds that I've been reading about.

>

>Cant wait to meet and put faces to all of these e-mails at the conference.

>

>Keep up the great support.

>

>

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

[Guest guest]

Thanks Jodi - also Joe for your input on night feeds.

tte gets 3 cans (24oz) a night and a 3 tsp of MCT oil. I cant seem to

find the right amount to feed at night. I feel if she doesnt eat that great

in the day then she will get her feeds at night, but then is she really too

full to eat alot the next day. My doctor said between 2-3 cans should be

sufficient. I'm also curious as to how long it takes for your feeds at night.

Also do you run your feeds quickly as you can or do you set the machine to

go through the night.

I like to give her at least 1 night off a week, which she really looks

forward to. But then again I keep thinking about what she missed that night

for calories. Do you feel that you have great deal of weight gain with the

tube or do you feel it is a safety net. Sometimes I feel that it is a monkey

off our backs (her back too) so that we aren't constantly trying to get her

to eat...

Well enough rambling for now..

Any other tips you might have would be greatly appreciated.

Thanks...

- mom to Jimmy 12 Jacquelyn 9 tte 4(RSS)

[Guest guest]

Thanks Jodi for words of " wisdom " - isn't great to know that your not alone

with this syndrome. We do the bribery thing with tte also. I think she

learned to count early because everything she ate consisted of " how many more

bites do I have to take. "

I'm going to try to feed her quicker through the night - hopefully she'll be

hungier in the morning.

Thanks again. This on-line is so helpful. Finally people who understand what

we go through. I try not to make RSS our life with friends and family, so

this support group is just what I needed.

I always love going to the conference just to see other RSS families and do

networking now I don't have to wait a year.

Hope to meet many of you this year. Anyone attending? This will be tte's

first year going. It was her idea to join me. My other 2 kids ages 12 and 9

really have no desire to go, so Dad will stay home and make it a nice

vacation for them. Sometime I feel that they are a little left out because

all the attention tte gets from us and other people. I can't wait for

the time when she doesn't stand out so much - we call it " when she reaches

her blending years " (meaning she'll just blend like everyone else.)

Thanks again

- mom to tte 4 yrs

[Guest guest]

, I understand your concern about the tube feedings keeping tte

from feeling hungry during the day. We tried many things with Max and his

pump and found this method works best with him: We first figured out how

many hours he slept each night, on average. Next, we determined the least

amount of formula he needed to maintain his weight. Then, we gave him

enough formula to meet that requirement over the number of hours he slept.

We found that this was the best way. He was getting enough to ensure he

would not lose weight, but he was hungry an hour or so after waking up.

And Periactin helped a lot to make him hungry, too. It was not easy. But

as Max began to eat more during the day, we adjusted his pump rate at night,

lowering it as necessary. Yes, the pump does act as a safety net. And our

children need it. So do we. There is alot of assurance for us and it keeps

us from fretting about what our children don't consume on their own. (I

LOVE the one night break a week. We did the same.)

We tried so many things to get Max to eat on his own, . It was so

frustrating! We did eventually reward him with stickers and such for any

attempt at eating, and after enough stickers, he was able to " cash them in "

for a small toy. Bribery works. Don't let anyone tell you it isn't

" healthy " for the child. Most professionals I have consulted have agreed

with this. The number one priority is learning to eat. Now Max is 11

(YIKES! Tomorrow is the big day!) and he understands the importance of good

nutrition.

These are my " words of wisdom " for today. Any more questions? Let me know.

I'll be glad to help.

Jodi

Re: No Subject

>From: BKAY0405@...

>

>Thanks Jodi - also Joe for your input on night feeds.

>tte gets 3 cans (24oz) a night and a 3 tsp of MCT oil. I cant seem to

>find the right amount to feed at night. I feel if she doesnt eat that

great

>in the day then she will get her feeds at night, but then is she really too

>full to eat alot the next day. My doctor said between 2-3 cans should be

>sufficient. I'm also curious as to how long it takes for your feeds at

night.

> Also do you run your feeds quickly as you can or do you set the machine to

>go through the night.

>

>I like to give her at least 1 night off a week, which she really looks

>forward to. But then again I keep thinking about what she missed that night

>for calories. Do you feel that you have great deal of weight gain with the

>tube or do you feel it is a safety net. Sometimes I feel that it is a

monkey

>off our backs (her back too) so that we aren't constantly trying to get her

>to eat...

>Well enough rambling for now..

>Any other tips you might have would be greatly appreciated.

>Thanks...

>

>- mom to Jimmy 12 Jacquelyn 9 tte 4(RSS)

>

>

>

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

[Guest guest]

Hi, :

I just got back from a two-day " get away " with my husband and the kids so sorry

for the delay in responding.. I noticed you wrote about g-tube kids......well,

my son, , has a g-tube. is 2 1/2 years old, weighs 19 1/2 lbs. and is

30 1/4 in. tall. He got the g-tube this past January and is doing GREAT! He's

gained 5 pounds since January (maybe more since we haven't taken him to the

doctor in a couple of weeks to weigh him).

Anyway, we feed him differently. He is bolus fed during the day on a regular

schedule (breakfast, lunch, snack, & dinner). He gets 30 ounces in a day. We

went through such HE_ _ the previous year with trying to get him to eat that now

with the g-tube, the G.I. doctor recommended we give him a break for a while

with

trying to force him to eat food. Therefore, any food he gets during the day

(crackers, french fries, chips) is only for snacking and practice with eating.

Anyway, it's been working for us at this time.

I hope things are going well for you.

Stacie

Mommy to daughter, - 6 yrs. and son, - 2 1/2 yrs. with RSS, G-tube,

Assemytry.

BKAY0405@... wrote:

> From: BKAY0405@...

>

> Thanks Jodi - also Joe for your input on night feeds.

> tte gets 3 cans (24oz) a night and a 3 tsp of MCT oil. I cant seem to

> find the right amount to feed at night. I feel if she doesnt eat that great

> in the day then she will get her feeds at night, but then is she really too

> full to eat alot the next day. My doctor said between 2-3 cans should be

> sufficient. I'm also curious as to how long it takes for your feeds at night.

> Also do you run your feeds quickly as you can or do you set the machine to

> go through the night.

>

> I like to give her at least 1 night off a week, which she really looks

> forward to. But then again I keep thinking about what she missed that night

> for calories. Do you feel that you have great deal of weight gain with the

> tube or do you feel it is a safety net. Sometimes I feel that it is a monkey

> off our backs (her back too) so that we aren't constantly trying to get her

> to eat...

> Well enough rambling for now..

> Any other tips you might have would be greatly appreciated.

> Thanks...

>

> - mom to Jimmy 12 Jacquelyn 9 tte 4(RSS)

>

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

[Guest guest]

I'd love to know the formula you used to arrive at the number of calories to

maintain Max's weight. We feed Tim 120 kcal/kg/day because that its about

the most he tolerates (20% more than what What to Expect The Toddler Years

says an active toddler needs)...

Inga

At 09:18 PM 7/1/99 -0400, z4all wrote:

>

>

>, I understand your concern about the tube feedings keeping tte

>from feeling hungry during the day. We tried many things with Max and his

>pump and found this method works best with him: We first figured out how

>many hours he slept each night, on average. Next, we determined the least

>amount of formula he needed to maintain his weight. Then, we gave him

>enough formula to meet that requirement over the number of hours he slept.

>We found that this was the best way. He was getting enough to ensure he

>would not lose weight, but he was hungry an hour or so after waking up.

>And Periactin helped a lot to make him hungry, too. It was not easy. But

>as Max began to eat more during the day, we adjusted his pump rate at night,

>lowering it as necessary. Yes, the pump does act as a safety net. And our

>children need it. So do we. There is alot of assurance for us and it keeps

>us from fretting about what our children don't consume on their own. (I

>LOVE the one night break a week. We did the same.)

>

>We tried so many things to get Max to eat on his own, . It was so

>frustrating! We did eventually reward him with stickers and such for any

>attempt at eating, and after enough stickers, he was able to " cash them in "

>for a small toy. Bribery works. Don't let anyone tell you it isn't

> " healthy " for the child. Most professionals I have consulted have agreed

>with this. The number one priority is learning to eat. Now Max is 11

>(YIKES! Tomorrow is the big day!) and he understands the importance of good

>nutrition.

>

>These are my " words of wisdom " for today. Any more questions? Let me know.

>I'll be glad to help.

>

>Jodi

> Re: No Subject

>

>

>>From: BKAY0405@...

>>

>>Thanks Jodi - also Joe for your input on night feeds.

>>tte gets 3 cans (24oz) a night and a 3 tsp of MCT oil. I cant seem to

>>find the right amount to feed at night. I feel if she doesnt eat that

>great

>>in the day then she will get her feeds at night, but then is she really too

>>full to eat alot the next day. My doctor said between 2-3 cans should be

>>sufficient. I'm also curious as to how long it takes for your feeds at

>night.

>> Also do you run your feeds quickly as you can or do you set the machine to

>>go through the night.

>>

>>I like to give her at least 1 night off a week, which she really looks

>>forward to. But then again I keep thinking about what she missed that night

>>for calories. Do you feel that you have great deal of weight gain with the

>>tube or do you feel it is a safety net. Sometimes I feel that it is a

>monkey

>>off our backs (her back too) so that we aren't constantly trying to get her

>>to eat...

>>Well enough rambling for now..

>>Any other tips you might have would be greatly appreciated.

>>Thanks...

>>

>>- mom to Jimmy 12 Jacquelyn 9 tte 4(RSS)

>>

>>

>>

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

[Guest guest]

There was no " magic " formula. It was by trial and error. For a long time

we were taking Max to the pediatrician for weekly, then biweekly, weight

checks. We were able to adjust his pump rate based on that. Dr. Harbison

did tell us what she felt the minimum caloric intake should be, which I

cannot recall exactly. I believe it was around 1200 calories/day. We

charted what he consumed on his own and made it up with the pump at night.

I don't remember using more than 500 or 600 cc's with the pump because that

was all the bag held. I hope this helps.

Jodi

Re: No Subject

>

>

>I'd love to know the formula you used to arrive at the number of calories

to

>maintain Max's weight. We feed Tim 120 kcal/kg/day because that its about

>the most he tolerates (20% more than what What to Expect The Toddler Years

>says an active toddler needs)...

>

>Inga

>

>.

>>>.>>>--------------------------- ONElist

Sponsor ----------------------------

>>>

>>>Campaign 2000 is here!

>>>http://www.onelist.com

>>>Discuss your thoughts; get informed at ONElist. See our homepage.

>>>

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

>>>

>>

>>

>>

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

[Guest guest]

Hi ,

Use your web browser and go to http://www.onelist.com

Type in your e-mal address and your pass word.

If your e-mail address has changed use your old e-mail address.

If that doesn't work then you can reregister.

Again use your web browser and go to http://www.onelist.com

Click on new member. Enter your e-mail address and a password. Then click on

register.

They will send you a confirmation e-mail in a bout 10 minutes. Go back to

the web site and join the RSS Support list.

Click on the Shared files area and you wil see a list of file folders. Most

(maybe all) have pictures

Does your Mac have the program PC Exchange?

Do you have OS 8.1 or later ?

Also use the finder to see if the picture were put in a file in some other

directory. If you find them then try and open them by double clicking on

them.

Also, your mac may have automatically compressed them. Try " UNSTUFFIT "

Let me know how you make out

My new work e-mail is kmerrith@...

Ken M

----------

>From: BKAY0405@...

>To: RSS-Supportonelist

>Subject: No Subject

>Date: Wed, Aug 11, 1999, 9:49 PM

>

> From: BKAY0405@...

>

> I think I found the web page to see pictures. I found Ross's picture way back

> when but cant remember how to do it. When I come to the sign in page I cant

> seem to go any further I just keep signing in. I have a MAC if that helps.

> I love the idea of making an album of kids to show my daughter - she will

> love them. Since she feels she is the only one with RSS and g-tube.

>

> Thanks and sorry for being such a computer klutz...

> mom to tte 4yrs RSS

>

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

[Guest guest]

No Subject

>Hi - Ross and my daughter tte are just about the same age. She

>was 5 in Sept. she also is in Kindgarten - She shows no signs at this time

>of any delays. We just me with her teacher and was wondering if Ross'

teacher

>had any concerns about him moving on to 1st grade. I dont want to hold her

>back because of RSS but am just wondering if she will be ok in 1st grade.

>With it being all day next year.With my other kids it was never a thought

and

>just sent them on like everyone else. I hate always blaming RSS for

>everything. tte also told me that she does not want to go to

>Kindergarten again next year - she was to move on with the other kids.

Not

>sure if this make sense to yu - but just curious what Ross' teacher felt

>about next year...

>

>Thanks

> Mom to tte 5yrs 26lbs GH g-tube

>

[Guest guest]

> liz your from calif...... who is the dr, a movement specialst,at

the

> parkinsons clinc in san jose. ............ bt.........

do you mean the Parkinssons Insstitute in Sunnyvale? My movement

disorder specialistis Dr. Togasaki, but there are others.

sophia dohj

[Guest guest]

YES SUNNYALE WENT TO DR TETRUD AND WAS DISENCHANTD. MAYBE CAN DO THS BY

ELIMINNATION NAME OF A WOMAN DR AND THANX BT,,,,,,,,,,,,,