New to the Group

[Guest guest]

Hi , Yes it is true about the soda, diet or regular, at first the

carbonation could put pressure on your new stomach, and latter the

acid is very damaging to anyone stomach, never mind our tiny ones

that must be protected very well. I was a diet pepsi freak before

surgery and quit a few weeks before surgery to get off the caffine so

I wouldn't have terrible withdrawal headaches right after surgery. I

have been told that even the morphine and demeral don't touch those

headaches, so who needs that. It was hard quitting because I couldn't

take any meds for the headaches so I did it very gradually and I have

not even thought about having a sip since then. About the sex thing

the only prohibitions about sex is you can't have any in the

hospital, then you can go to town, but remember your birth control

pills don't work after surgery. There have been jokes about the sex,

but Dr. R only has that one rule about that. When I was researching

other surgeries, I read some types recommend no sex for 6 weeks

yikes. I think I waited 4 days and I am 53, you have to fill your

time with something when you are in Durham waiting your 7 days.

I hope I didn't offend anyone, but we don't want to scare the pre-ops

too bad, and besides there would never be another man having this

surgery or a husband that would want their wife to, if they believed

the joke about no sex.

It will only get better and better I hear.

Marjory

1st Ca girl

8/30/00

285/251

> Hi my name's , I'm from Michigan. I'm hoping to be dancing

> soon. Dr. R has had my packet since last friday, so hopefully I'll

> hear something soon!! I've been following you for awhile now &

> everyone sounds so nice & supportive, I wanted to join in on the

> fun. A couple questions; Can you ever drink diet pop again? And

> also, I read a few weeks back, that there's a no sex policy!!

> Is this possibly true???? If anyone wants to email me privately

> you can at gmes@c... Thanks & keep up the great work

>

[Guest guest]

Hi : I figured I'd better speak up since I'm the fool that kiddingly said

there's a no sex police. There's not. I just like to tease.

Dr. R does not recommend ever drinking soda again. He says it contributes to

ulcers, makes you feel full and you need the room for nutritious food, and do

not have any nutritional value.

I was a diet coke and I do miss it.

Welcome. You've arrived in a good place.

Flo from land

> ** Original Subject: RE: New to the group

> **

> ** Original Date: Tue, 10 Oct 2000 18:21:54 -0600

> ** Original Message follows...

>

> Hi my name's , I'm from Michigan. I'm hoping to be dancing

> soon. Dr. R has had my packet since last friday, so hopefully I'll

> hear something soon!! I've been following you for awhile now &

> everyone sounds so nice & supportive, I wanted to join in on the

> fun. A couple questions; Can you ever drink diet pop again? And

> also, I read a few weeks back, that there's a no sex policy!!

> Is this possibly true???? If anyone wants to email me privately

> you can at gmes@... Thanks & keep up the great work

>

>

>

>

[Guest guest]

Hi all: For anyone who has trouble leaving off the carbonated drinks I

remember a little test we once did at camp that I would like to share.

Take a piece of salt pork, or bacon, and put in a glass. Pour your

favorite carbonated drink on it and leave it for a few days and watch the

results. That is what it will do to the lining of your stomach.

A test for those who miss the alcohol you may try this little test.

Take a small clear glass bowl. Put in one raw egg and pour rubbing

alcohol over it. It will cook the egg. I know the rubbing alcohol is

not the same as what you drink but the same properties apply.

Phyllis in fla.

sumlinsr@... wrote:

> Hi , Yes it is true about the soda, diet or regular, at first the

> carbonation could put pressure on your new stomach, and latter the

> acid is very damaging to anyone stomach, never mind our tiny ones

> that must be protected very well. I was a diet pepsi freak before

> surgery and quit a few weeks before surgery to get off the caffine so

> I wouldn't have terrible withdrawal headaches right after surgery. I

> have been told that even the morphine and demeral don't touch those

> headaches, so who needs that. It was hard quitting because I couldn't

> take any meds for the headaches so I did it very gradually and I have

> not even thought about having a sip since then. About the sex thing

> the only prohibitions about sex is you can't have any in the

> hospital, then you can go to town, but remember your birth control

> pills don't work after surgery. There have been jokes about the sex,

> but Dr. R only has that one rule about that. When I was researching

> other surgeries, I read some types recommend no sex for 6 weeks

> yikes. I think I waited 4 days and I am 53, you have to fill your

> time with something when you are in Durham waiting your 7 days.

> I hope I didn't offend anyone, but we don't want to scare the pre-ops

> too bad, and besides there would never be another man having this

> surgery or a husband that would want their wife to, if they believed

> the joke about no sex.

> It will only get better and better I hear.

> Marjory

> 1st Ca girl

> 8/30/00

> 285/251

>

> > Hi my name's , I'm from Michigan. I'm hoping to be dancing

> > soon. Dr. R has had my packet since last friday, so hopefully I'll

> > hear something soon!! I've been following you for awhile now &

> > everyone sounds so nice & supportive, I wanted to join in on the

> > fun. A couple questions; Can you ever drink diet pop again? And

> > also, I read a few weeks back, that there's a no sex policy!!

> > Is this possibly true???? If anyone wants to email me privately

> > you can at gmes@c... Thanks & keep up the great work

> >

>

>

[Guest guest]

Good answer, Phylis!! I know I won't have any trouble leaving both, carbonated

beverages and alcoholic ones alone!!

Trudy

Re: Re: New to the group

Hi all: For anyone who has trouble leaving off the carbonated drinks I

remember a little test we once did at camp that I would like to share.

Take a piece of salt pork, or bacon, and put in a glass. Pour your

favorite carbonated drink on it and leave it for a few days and watch the

results. That is what it will do to the lining of your stomach.

A test for those who miss the alcohol you may try this little test.

Take a small clear glass bowl. Put in one raw egg and pour rubbing

alcohol over it. It will cook the egg. I know the rubbing alcohol is

not the same as what you drink but the same properties apply.

Phyllis in fla.

sumlinsr@... wrote:

> Hi , Yes it is true about the soda, diet or regular, at first the

> carbonation could put pressure on your new stomach, and latter the

> acid is very damaging to anyone stomach, never mind our tiny ones

> that must be protected very well. I was a diet pepsi freak before

> surgery and quit a few weeks before surgery to get off the caffine so

> I wouldn't have terrible withdrawal headaches right after surgery. I

> have been told that even the morphine and demeral don't touch those

> headaches, so who needs that. It was hard quitting because I couldn't

> take any meds for the headaches so I did it very gradually and I have

> not even thought about having a sip since then. About the sex thing

> the only prohibitions about sex is you can't have any in the

> hospital, then you can go to town, but remember your birth control

> pills don't work after surgery. There have been jokes about the sex,

> but Dr. R only has that one rule about that. When I was researching

> other surgeries, I read some types recommend no sex for 6 weeks

> yikes. I think I waited 4 days and I am 53, you have to fill your

> time with something when you are in Durham waiting your 7 days.

> I hope I didn't offend anyone, but we don't want to scare the pre-ops

> too bad, and besides there would never be another man having this

> surgery or a husband that would want their wife to, if they believed

> the joke about no sex.

> It will only get better and better I hear.

> Marjory

> 1st Ca girl

> 8/30/00

> 285/251

>

> > Hi my name's , I'm from Michigan. I'm hoping to be dancing

> > soon. Dr. R has had my packet since last friday, so hopefully I'll

> > hear something soon!! I've been following you for awhile now &

> > everyone sounds so nice & supportive, I wanted to join in on the

> > fun. A couple questions; Can you ever drink diet pop again? And

> > also, I read a few weeks back, that there's a no sex policy!!

> > Is this possibly true???? If anyone wants to email me privately

> > you can at gmes@c... Thanks & keep up the great work

> >

>

>

[Guest guest]

Elias

This is a great group of people who are always here to support one

another. I dont post often but sure have learned alot from those in group.

My son is 19 and in college so we are here for you if you have any ??.

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: New to the group

>Date: Tue, 30 Dec 2003 15:48:39 -0700

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>

>Hello everyone,

>

>I just joined the group- just found it- and I think I'll like it! My

>daughter is 11 months old and has CF, and I have a son as well without

>CF. I am so grateful we live in CO where newborn screening for CF is

>mandatory- we can thank insurance companies for not having it in every

>state. Anyhow, we found out when she was about a month old that she had

>CF, and since then, she has been doing great. She's been on oral

>antibiotics 4-5 times, but our Children's Hospital here is more

>aggressive than some and put the kids on them whenever they have a

>cough. She hasn't been in the hospital at all, and in fact is in the

>50th percentile for weight, which I'm told is pretty good for a CF kid.

>

>Anyhow, thanks to whomever created this group- support is the best

>medicine with something like this.

>

>Elias- dad to Uriah, 4, w/o CF and Soley, 11 mon, w/CF.

>

>_____ ACG_____

>Alumni Consulting Group

>

>Elias Cobb

>Senior Technical Recruiter

>

>ecobb@...

>

>

>

>

>

[Guest guest]

Elias,

It's great to have you in the group. Sorry that I am a little late

in welcoming you. I have not fully caught up from the holidays. I'm

glad that your daughter was diagnosed early. That is a huge

advantage. I have a 2 year old grand daughter with CF. She was not

diagnosed at birth. By the time that she was diagnosed, she had

irreversable lung damage. She had to have her upper right lobe

removed when she was just six months old. She is doing pretty good

right now. Our babies are too preciuos for this nasty illness!

Anyway... WELCOME!

Gale

Grandma to Abby, 2 yo wcf

> Hello everyone,

>

> I just joined the group- just found it- and I think I'll like it!

My

> daughter is 11 months old and has CF, and I have a son as well

without

> CF. I am so grateful we live in CO where newborn screening for CF

is

> mandatory- we can thank insurance companies for not having it in

every

> state. Anyhow, we found out when she was about a month old that

she had

> CF, and since then, she has been doing great. She's been on oral

> antibiotics 4-5 times, but our Children's Hospital here is more

> aggressive than some and put the kids on them whenever they have a

> cough. She hasn't been in the hospital at all, and in fact is in

the

> 50th percentile for weight, which I'm told is pretty good for a CF

kid.

>

> Anyhow, thanks to whomever created this group- support is the best

> medicine with something like this.

>

> Elias- dad to Uriah, 4, w/o CF and Soley, 11 mon, w/CF.

>

> _____ ACG_____

> Alumni Consulting Group

>

> Elias Cobb

> Senior Technical Recruiter

>

> ecobb@a...

>

>

>

>

>

[Guest guest]

In a message dated 2/11/04 10:56:17 AM Eastern Standard Time,

JLAWSON75@... writes:

> Hi Everyone! My name is . I am 2 years and almost 4 months

> out of RNY surgery. I have lost 220 lbs total and hoping to continue

> a loss. I am working on getting recontructive surgeries done. I

> have 1 down and about 2 more reconstructive surgeries to go to get

> all this skin off me. Insurance approval is beyond ridiculous when it

> comes to skin removal. Dr. Ramesh Srungaram was my WLS surgeon. He

> is wonderful! I am so glad that I did this for myself. It started a

> whole new beginning for me! I do struggle daily though with my best

> friend...FOOD... I love it, but as I've told K. (who

> introduced me to this site) I have to take it one bite at a time.

> Thanks for letting take a moment of everyone's time. Feel free to

> contact me at any time!

>

>

welcome ,

i loved that you wrote 'i am so glad that i did this for

myself'....it is a statement of pure joy...

good luck with your reconstructive surgeries...

warmly,

laura

[Guest guest]

Dear ,

It may be a bit early, yet, to determine whether or not you have chronic

pancreatitis. Your values are only slightly elevated and there are other

factors

that can cause a rise in amylase and lipase. One test that you didn't mention,

which may be helpful, would be a triglyceride test. This is a fasting blood

test

and most frequently done when gastroenterologists suspect pancreatitis.

Since your CT and MRI didn't show any signs of chronic pancreatitis, this may

be another test that the doctors would consider.

Not to confuse you, but quite often early stage chronic pancreatitis doesn't

show up in a CT-scan or MRI. There has to be considerable enlargement of

the pancreas, signs of calfication, pseudocyst(s), or ductal dilation before

they

will show in these films, and often those warning signs aren't evident in the

early stages.

While there's no question that something is wrong, your jabbing pains in the

right lower and upper quadrant and stomach pains obviously indicate that

something isn't as it should be. Your sensitivity to certain foods amplifies

this.

You say that this " latest diagnosis " is a blow to you, yet you really don't have

a

true diagnosis yet. The doctors seem to be unprepared to put a confirmed

label on exactly what your condition is until they have more documentation to

prove it.

You mentioned that you were taking all these supplements to help have better

gallbladder function. May I ask why? Is there a problem with your

gallbladder? You didn't mention that they had cone any gallbladder

functioning tests, so I was wondering why you were trying to improve its

function. Have they done a HIDA scan?

For the time being, until they can confirm a true diagnosis, I personally think

it

would be better to stop taking all those supplements, unless, of course, you

have been told by your physician to take them. It might be too much of a good

thing. The supplements themselves, could confuse the issue enough for them

not to be able to get a clear picture of what's going on with your

gastrointestinal problems. While there are cases of pancreatitis caused by

patients who were taking certain prescribed medications, I don't know of any

pancreatitis being caused by dietary supplements.

It may be that you are putting the cart before the horse, . For your

sake, I hope that this is the case, and that the cause of your present pain and

sensitivity to chocolate is something easily repaired. Chronic pancreatitis is

a

horrible condition to have and I wouldn't wish it on anyone, (except maybe a

doctor or two......lol). Sorry, that's an inside joke!

For now I suggest that you continue to be aggressive with your doctors for

them to continue tests that would confirm or eliminate chronic pancreatitis.

You're welcome to read all our posts, and comment on anything that you'd like

to contribute to. You may find in reading the posts that there are some more

similarity of symptoms between you and our other members. And there's no

question that you'll learn things about CP here that you won't from any doctor,

so listen and learn, and we'll help you with your confusion any way we can.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina State Rep.

SE Regional Rep., PAI

http://pancassociation.org/anthology.htm#Heidi

Note: All comments or advice are based on personal experience or opinion,

and should not be substituted for consultation with a medical professional.

wrote:

> I am new to the group & new to pancreatitis, I think. (snip) I have just been

told that my amalyase & lypase enzymes are slightly elevated. (Amalyase -

118, Lipase - 74). (snip) I have just had an abdominal CT scan, as well as an

MRI, both of which showed nothing other than a slight thickening of my left

adrenal gland. No gallstones, no inflammation of the pancreas, ducts, or

anything...everything looked normal.

(snip) I am experiencing strange (to me) stomach pains as well as pinching/

jabbing pains in my right & lower upper quadrants. I also have the belching &

light colored stools. As I said, my doctors don't seem concerned,

(snip), the absolute worst part for me is the nausea...especially from

chocolate, which is my favorite!!!

(snip) I am not sure if this can have anything to do with pancreatitis, but I

have

been taking some supplements over the last few months.

(snip) For over 10 years I have had chronic fatigue syndrome, then

fibromyalgia, then intersitital cystitis, and the list goes on.

(Snip)I guess my questions are has anyone else had only slightly elevated

enzymes numbers with symptoms??? What happens from here??? Will I

ever be able to eat chocolate again??? If every test is coming back normal

except the bloodwork, what does that mean...should I be as concerned as I

am???

[Guest guest]

Ho-Kay. You have a lot of questions here, and I'll do what I can to

help answer them.

Your docs are giving you good advice. There have been more than a

few folks here who've had surgery before their growth stopped, and

had to repeat it, later. So wait until the docs say she's ready.

There are tests (I believe x-rays of the hands and studies of the

bone plates may be involved) that can tell you more about the

timing. I'm a lay person, but your docs should be able to explain.

Not every doc wires. Or even bands. And certainly not for every

procedure. I had small lower advancement, in the hands of a most

excellent surgeon, way down here in lower Alabama, and was neither

wired nor banded when I left the hospital. I did have a splint wired

in, and I did spend about 20 months in braces, at age 56. Those were

both unwelcome, but the results justified the work.

And yep. If you look at photos of me and my pop, you will see that,

alas, I inherited his jaws. (He was born in 1904, tried to undergo

orthodontics, but the procedures back then were so primitive and

awful that I think he couldn't bear them. I was interested recently,

when I saw a cardiologist who's a lot younger than am I, to hear

that he'd had braces installed, but had them removed because he

found them too painful. I'm thinking that he had a faulty

orthodontist, because while I didn't enjoy a moment of it, the

procedures are sooooo much better for me than they were in the 1950s

that it never entered my mind that I couldn't get through it, with

the aid of a bit of Alleve or Advil.)

I would expect that techniques and procedures will get better. Your

child(ren) may have even an easier adventure than did I, and mine

was much better, and more helpful, than my first experience with

orthodontics.

As for what other kids will or will not say: Well, I don't know the

answer to that. I do wish that Fiddlesticks were here, because

she was apparently given a lot of grief about her mouth as a kid,

and came through it happy with her " before " face, and happy with

her " after " face. She had a lot of change. I didn't. She'll be back

posting in a week or so, and perhaps she can give you more specific

help on that topic, or maybe others here can.

Children can be kind, and children can be cruel, and I suppose that

such is how we all try to learn to live in this world. I hope that

you will encourage those upon whom you have influence to find

interests in others that lie beneath the surface of appearances.

And hey -- if it comes down to having a mouth wired shut, that is

not the biggest catastrophe that can happen. There are many, many

patients who have found being wired shut to be their path to

successful results. It can be managed -- and if your children were

injured in an auto or other accident, they could find it life-

saving. So don't go breaking your heart over that!

There are any number of most excellent surgeons, on the east coast,

on the west coast, and even here in lower Alabama. Without

hesitation I would recommend my own Dr. A. Zieman, and his

partners. But I suspect that you need not travel so far for help.

There have been many patients who have found most excellent results

from oral and maxillofacial surgeons, or plastic surgeons, in New

York and environs.

But if you wanna come all the way to lower Alabama, you can't do

better than my guy!

Meantime, I hope you will give your child love that transcends her

face and her jaw, as you've always done, and encourage her to enjoy

her accomplishments and pursue whatever physical and structural help

she may need to have a mouth that serves her. Sometimes it doesn't

sink in with parents that these can be issues of general health and

the resolution of pain -- mismatched jaws can cause problems ranging

from arthritis and destruction of joints to terrible migraine

headaches and failing nutrition from the inability to chew. Surgery

can help, or not help, such disorders. But it's not just an issue of

cosmetic improvement, for many of us.

Best,

Cammie

> Hi Everyone---

>

> My name is Elana and I have a 10 year old daughter who has been

diagnosed as

> a " class 3 " from a very young age. She has been to orthodontists

as well as

> an Orthognathic Surgeon for a consult but they have all said there

is nothing

> to do until she is fully grown---translation: this mother can

drive herself

> crazy for the next 10 years or so. The thought of this sweet

little girl having

> both jaws cut and a wired jaw makes me crazy!!!!

>

> I have been reading all of your e-mails and postings since I

joined the group

> several days ago and I am amazed at the positive attitude you all

have.

>

> What's worse, is that my 15 year old niece, who they have been

monitoring for

> her class 3, was told this past week that she will need the

surgery as well.

> My heart breaks for her and my sister and in about a year, this

will all be

> right in my face.

>

> While researching the whole thing this weekend, I see there is a

doctor in

> California uses plates and screws rather than wiring.

>

> Which leads me to a number of questions:

>

> 1. Has anyone here had the procedure without wiring the jaws?

>

> 2. Anyone know of any new technique on the horizon that will make

the

> procedure easier on the patient?

>

> 3. Which hospital is best known for this specialty in the US?

>

> 4. Who is the absolute surgeon who is tops in this field in the

US?

>

> 5. Are there other members of your family who has this too?

>

> I tell my daughter everyday how beautiful she is (and she really

is!!!!) but

> her lower jaw does jut out and as she is getting older, it is

becoming more

> apparent. I worry about what other kids will say to her as we all

know how mean

> kids can be.

>

> 6. I would also appreciate any advice you can offer if you grew up

with the

> same problem----how I can help HER ultimately.

>

> Thank you for your time and I look forward to getting to know all

of you.

> Elana

> New York

>

>

>

[Guest guest]

Hi Elana,

I have had multiple jaw surgeries and my daughter has inherited my

jaw as well. At age 2, her overbite was measured to be 8 mm. By age

3, it was 10 mm. Her pediatric dentist hasn't measured her overbite

since then but it is still very obvious and not something she'll

outgrow. They've told us, she will get braces when she starts to get

her adult teeth around age 7 or 8 and she will have them off and on

until she stops growing. They do have some techniques to now to

encourage her lower jaw to go but my surgeon said it probably won't

be enough to correct her overbite completely. She'll more than

likely still need surgery when she stops growing.

To answer your questions:

1. I was not wired for any of my surgeries but have been banded shut

for some with removable elastics. I do have plates and screws that

will stay in forever. Whether someone is wired shut or not depends

not just on the surgeon but also how stable they think the jaw is,

how big the movements are, whether or not they use a bone graft, etc.

2. My surgeon did use a relatively new technique on me called

distraction osteogenesis in which we gradually lengthened my lower

jaw 17 mm over a period of 2 weeks instead of all at once with a

bone graft. Since your daughter has the opposite problem and will

need her lower jaw set back, this technique wouldn't apply to her.

I haven't heard of any new techniques to move the lower jaw back.

The only other new technique I've heard of is dissolvable screws and

plates. My surgeon mentioned them during my first visit to him over

four years ago. At that time, he said he didn't use them because

there hadn't been enough studies to see how patients did in the long

run. There have been a few people here who have had them. Most

people who have the conventional screws and plates leave them in

permanently without any problems so there probably not much of an

advantage of having the dissolvable ones.

3./4. There are many excellent surgeons across the country who do

these procedures routinely including in New York. I have been very

happy with my surgeons here in North Carolina. There's no one

surgeon or hospital that is the best in the country. Sara had her

surgery in New York recently and is very pleased with her results.

I'm sure she would share the name of her surgeon and ortho with you.

There is no need to travel across the country. Also it's better to

see a local surgeon. Usually patients go back to their surgeon

weekly for the first 4-6 weeks and then less frequently over the

next several months to make sure everything heals well. Also her

ortho and her surgeon will need to communicate frequently so it is

helpful to have a team that work together on a regular basis instead

of being on opposite ends of the country.

5. My mother and my daughter also have my jaw. At the aforementioned

pediatric dental visit with , the dentist looked at my mother

and said " You have it and has it. " Then she looked at me and

asked " Who did your surgery - Dr T or Dr S? " I know how you feel. I

wanted to cry and scream when I found out had inherited my

jaw. Sometimes I think it has hurt my mother more to watch me go

through multiple procedures more than it has hurt me. I'm sure I'll

feel the same way when it's 's turn.

As for other kids well, kids make fun of other kids for whatever

reason they can find whether it's their teeth, wearing glasses,

being shorter or taller, fatter or thinner, hair color or anything

at all. If she is being made fun of, the best thing to do is ignore

it and pretend like it doesn't bother her. If the other kids can't

get a reaction out of her, they will stop. That's how it worked for

me anyway. I know because I got made fun of a lot for being the

shortest, skinniest, wearing glasses and having braces years before

anyone else in my school.

6. You're already doing the best thing to ultimately help her by

doing research to find out as much as you can about jaw surgery and

getting her treatment as early as possible. Both of you will learn a

lot by seeing what her cousin goes through. Also by having the

surgery while she is young will help her avoid a lot of the problems

she could develop if her bite is not corrected, i.e. damage to her

teeth and/or joints. When I was her age, there were no treatments to

correct my huge overbite. Because of it, my jaw started to dislocate

when I was 7 or 8 and my ortho told me I was faking it so he

couldn't work on my braces. By the time I was an adult I already had

severe arthritic changes in my TMJ's. My back teeth are also worn

down to flat nubs by being the only teeth that touched for many

years so I will need crowns on them after the braces are off. I also

ended up needing bilateral total joint replacements which were done

six weeks ago. That surgery was worse than any orthognathic

surgeries I had and I wouldn't wish it on anyone.

Also since your daughter will still be very young when she has her

surgery, she will have a much quicker recovery than those of us who

are older and she will hopefully avoid any long-term damage to her

teeth and joints. Being well-informed and knowing what to expect

will help her get through this more than anything else.

Good luck with everything. I hope this helps.

> Hi Everyone---

>

> My name is Elana and I have a 10 year old daughter who has been

diagnosed as

> a " class 3 " from a very young age. She has been to orthodontists

as well as

> an Orthognathic Surgeon for a consult but they have all said there

is nothing

> to do until she is fully grown---translation: this mother can

drive herself

> crazy for the next 10 years or so. The thought of this sweet

little girl having

> both jaws cut and a wired jaw makes me crazy!!!!

>

> I have been reading all of your e-mails and postings since I

joined the group

> several days ago and I am amazed at the positive attitude you all

have.

>

> What's worse, is that my 15 year old niece, who they have been

monitoring for

> her class 3, was told this past week that she will need the

surgery as well.

> My heart breaks for her and my sister and in about a year, this

will all be

> right in my face.

>

> While researching the whole thing this weekend, I see there is a

doctor in

> California uses plates and screws rather than wiring.

>

> Which leads me to a number of questions:

>

> 1. Has anyone here had the procedure without wiring the jaws?

>

> 2. Anyone know of any new technique on the horizon that will make

the

> procedure easier on the patient?

>

> 3. Which hospital is best known for this specialty in the US?

>

> 4. Who is the absolute surgeon who is tops in this field in the

US?

>

> 5. Are there other members of your family who has this too?

>

> I tell my daughter everyday how beautiful she is (and she really

is!!!!) but

> her lower jaw does jut out and as she is getting older, it is

becoming more

> apparent. I worry about what other kids will say to her as we all

know how mean

> kids can be.

>

> 6. I would also appreciate any advice you can offer if you grew up

with the

> same problem----how I can help HER ultimately.

>

> Thank you for your time and I look forward to getting to know all

of you.

> Elana

> New York

>

>

>

[Guest guest]

Hi Elana,

As Cammie said in her post, I was away for a week, so I missed this

post.

I had upper/lower/genio surgery 3 years ago for an overbite/recessed

lower jaw. I opted to have this surgery for functional reasons - I

had been having tmj symptoms for a long time (jaw popping, clicking,

locking), and had recently started to have pain on opening to eat. I

was almost 47 years old when I had the surgery. I decided to have it

as I knew things wouldn't get better (my joints were starting to

wear down).

As children get older, they can be cruel and alienate children who

have visible differences or disabilities. I was no exception there,

but I quickly learned to put on a tough shell and ignore it. I had a

small group of friends who liked me for the person I was inside, not

outside. I grew up with a very musical mother (according to her, I

sang coming out of the womb, and could be heard singing songs she

sang while in my crib), and received musical training from my mother

and grandmother (an excellent pianist/organist). When I was 10,

about your daughter's age, I started to learn the violin. I was soon

progressing very quickly at this, and gained a whole new set of

friends who were interesting in music.

I guess what I'm saying is that your daughter may not suffer through

her teen/early adult years. It depends on her own attitude, not on

the attitudes of others. You and the rest of her family can help by

reinforcing positive aspects of her life, and helping her to

overcome any cruelty inflicted by schoolmates. Helping her to become

involved in an activity where she can blossom is a great idea - it

could really be anything at all, but just something that she loves

to do and has some natural ability. Something that is a group

activity and where looks do not matter (obviously beauty contests

are a Bad Thing).

I was indeed content with my " before surgery " face. I could have

lived with it the rest of my life. I am content with my " after

surgery " face, although I am not as used to it even now. The change

made me realize even more how physical appearance is so unimportant.

It's who you are inside and what you do, how you relate with others,

your character, that counts. I often imagine if the whole world

suddenly became blind, how much kinder we would be to one another.

My mother was also worrried about my having the surgery, even though

I am grown up and on my own for many years. It comes with the

territory of being a mother, I guess. She says " you'll always be my

child " . She also said that I was perfect when I left her, so there

are no warranty claims!!!

Anyway, I tried to explain why I needed the surgery, and what might

happen if I didn't have it, how it would improve the quality of my

life. She was fine with it after that.

The more you can learn about this surgery, the better. You're asking

the right questions. I suspect most of the detail, though (like

wiring vs plates & screws) will not be relevant to you until surgery

draws closer. What's important is WHO does the surgery, not their

technique. You want a good relationship between ortho & surgeon, and

you want people who have a lot of experience. A surgeon who performs

many of these in a year is best.

I hope that helps,

> Hi Everyone---

>

> My name is Elana and I have a 10 year old daughter who has been

diagnosed as

> a " class 3 " from a very young age. She has been to orthodontists

as well as

> an Orthognathic Surgeon for a consult but they have all said there

is nothing

> to do until she is fully grown---translation: this mother can

drive herself

> crazy for the next 10 years or so. The thought of this sweet

little girl having

> both jaws cut and a wired jaw makes me crazy!!!!

>

> I have been reading all of your e-mails and postings since I

joined the group

> several days ago and I am amazed at the positive attitude you all

have.

>

> What's worse, is that my 15 year old niece, who they have been

monitoring for

> her class 3, was told this past week that she will need the

surgery as well.

> My heart breaks for her and my sister and in about a year, this

will all be

> right in my face.

>

> While researching the whole thing this weekend, I see there is a

doctor in

> California uses plates and screws rather than wiring.

>

> Which leads me to a number of questions:

>

> 1. Has anyone here had the procedure without wiring the jaws?

>

> 2. Anyone know of any new technique on the horizon that will make

the

> procedure easier on the patient?

>

> 3. Which hospital is best known for this specialty in the US?

>

> 4. Who is the absolute surgeon who is tops in this field in the

US?

>

> 5. Are there other members of your family who has this too?

>

> I tell my daughter everyday how beautiful she is (and she really

is!!!!) but

> her lower jaw does jut out and as she is getting older, it is

becoming more

> apparent. I worry about what other kids will say to her as we all

know how mean

> kids can be.

>

> 6. I would also appreciate any advice you can offer if you grew up

with the

> same problem----how I can help HER ultimately.

>

> Thank you for your time and I look forward to getting to know all

of you.

> Elana

> New York

[Guest guest]

Hi , I am . Welcome to the group and congratulations

on the birth of your daughter. I have a 20 mos old RSS daughter who

weighed 5 lbs 6 oz and was born at 38.5 weeks. There is not really a

RSS test out there. There is a test for UPD7 that about 7-10% of RSS

kids test positive for, but a negative result does not dismiss RSS. It

is mainly a clinical diagnosis based upon history and features of your

child made by a knowledgable geneticist or other doctor familiar with

genectic disorders. Autumn grew pretty well )for RSS) until 9 mos of

age and it went downhill from there. She was about 9 lbs at 3 mos so

that is about a 3.5 lb gain, similar to your daughter. She is now 16

lbs at 20 mos. I don't know the average weight gain for RSS kids

though, but it is not much! I also have another daughter Summer who

was born 4 lbs 13 oz and is now 2.5 mos and 8 lbs., as of now, I do not

know why she is small. She doesn't look RSS like Autumn but she is

growing very slowly and is tiny. Good luck in finding the answers you

are looking for and I hope you can find a knowledgeable doctor that can

help you. Check out the Magic Foundation's site at

http://www.magicfoundation.org/www

there is a lot of good info there.

mom to Autumn 20 mos RSS, Summer 2.5 mos, Ocean 3 yrs, Skye 7

yrs

> Hello everyone...

>

> I'm and I believe my 3 month old has RSS. I was monitored

> thru the pregnancy because my daughter was so small. She was born at

> 38 weeks weighing 3lb 15oz. Now she's 3 months weighing 7 1/2 pounds.

> Her right side of her body is a bit smaller than the left, and her

> right foot is turned out a bit, and her head is larger and is funny

> shaped. But other than that she's a beautiful infant who's laughing

> and cooing all the time. We go to the Shriners for her foot.. and I

> was wondering what to ask the doctors to do so they can test for RSS.

>

> I felt like i was wondering thru the forest of birth defects and

> finally RSS made since for my daughter. I would enjoy knowing anything

> at all... still very new to this. She eats well, but I was wondering

> what an RSS infant should be gaining each month. I'm looking forward

> to hearing from you all... Thank you in advance.

>

> Pickett

[Guest guest]

,

My name is Chrissy also and my daughter was bron at 38 weeks and weighed

3lbs 15oz also how odd is that LOL.

Well i'd like to say welcome and hope you find this list serve helpful.

Where are you from?

Chrissy

[Guest guest]

hi christine!!

WELCOME TO THIS GREAT BIG " FAMILY " OF SUPPORT!! did you check out the

magic foundation's website at www.magicfoundation.org ? they are a non-

profit org for families of children and adults with growth disorders!!

where do you live? the US expert for rss is in nyc and its worth the

trip to have an appt wih her. i have a 4 1/2yr old son christopher who

has rss. he is very smart, happy child!! right now he weighs 30lbs

and is 38 1/2 " tall he will be 5 in dec. feel free to ask any

questions and email me if you like at jlcals2003@ yahoo.com (no space

after @)

jodie c

[Guest guest]

Hi ...

Thank you for writing back to me. I was wondering..

when you said your daughter went downhill at 9

months.. what happened? I have heard about failer to

thrive and how do you know that is happening?

From reading your letter.. I just have to wait and see

how she grows really.... I guess there isn't mucht

they could do right now anyway. One doc talked about

breaking the growth plate in her longer leg when she's

about 13... that just makes my skin crawl. I have to

keep telling myself... we will cross that bridge when

we get there.

Thanks again for writine me back...

__________________________________________________

[Guest guest]

Hi Jodie..

Thank you for writing me back... I'm slowly learning

there isn't a way to test for RSS and I just have to

see how she grows. I " m one of these people that like

to know right away... This will be a good lesson for

me. Heck.. when i had an amino.. it was a killer to

wait the 2 weeks.. so I paid $500 extra bucks to get

the results faster.

Anyway... thank you for the information.. and I'll

keep your addy handy for future questions.

BTW.. I live in South carolina.. we just moved here

from Pennsylvania. Heck.. I have always wanted to see

NYC... maybe now I will! Thanks again for writing..

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

Weird! Your Chrissy and I'm ... and our kids

were the same weight!

Anyway.. thank you for writing.. I'm living in South

Carolina. We just moved here 4 months ago.... still

getting use to the area.

If you don't mind telling me your RSS story sometime..

i would love to hear it. I'm gathering that it's a

waiting game... there is no test for RSS. I just have

to wait and see how she grows. I have genetic testing

sceduled on the 17th and I don't know how broad they

are going to go....

I have contacted the MAGIC foundation and recieved the

newsletter.

Thanks again for writing..

______________________________________________________

Yahoo! for Good

Donate to the Hurricane Katrina relief effort.

http://store.yahoo.com/redcross-donate3/

[Guest guest]

Hi . What I meant by that was as Autumn got older her

weight and eating kept getting worse. I don't know if it was the

introduction to solids as a new way of nourishment or something, but

her weight keeps dropping further off her curve and her height

remains following the same curve so her weight to length ratio is now

under 3rd% and is failure to thrive and continuing to get worse. The

weight for lenth ratio is most important here. Neither of her weight

or height individual curves are on the charts but she used to be just

hanging in there for weight to height curve. You can check out the

charts at

http://www.cdc.gov/growthcharts/ and plot her growth.

> Hi ...

>

> Thank you for writing back to me. I was wondering..

> when you said your daughter went downhill at 9

> months.. what happened? I have heard about failer to

> thrive and how do you know that is happening?

>

> From reading your letter.. I just have to wait and see

> how she grows really.... I guess there isn't mucht

> they could do right now anyway. One doc talked about

> breaking the growth plate in her longer leg when she's

> about 13... that just makes my skin crawl. I have to

> keep telling myself... we will cross that bridge when

> we get there.

>

> Thanks again for writine me back...

>

>

>

> __________________________________________________

>

[Guest guest]

Hi ,

I just wanted to welcome you to the group and to say " HI " . I have a 3

year old, , who has RSS. It has been so long since I have been

able to post on the list, but have read posts every so often and I saw

yours and wanted to welcome you. Everyone here is great and very

helpful and supportive.

I hope your little girl continues to do well and keep us posted on what

you find out. We would love to see a picture! )

Talk soon,

Jodi R.

> Hello everyone...

>

> I'm and I believe my 3 month old has RSS. I was monitored

> thru the pregnancy because my daughter was so small. She was born at

> 38 weeks weighing 3lb 15oz. Now she's 3 months weighing 7 1/2 pounds.

> Her right side of her body is a bit smaller than the left, and her

> right foot is turned out a bit, and her head is larger and is funny

> shaped. But other than that she's a beautiful infant who's laughing

> and cooing all the time. We go to the Shriners for her foot.. and I

> was wondering what to ask the doctors to do so they can test for RSS.

>

> I felt like i was wondering thru the forest of birth defects and

> finally RSS made since for my daughter. I would enjoy knowing anything

> at all... still very new to this. She eats well, but I was wondering

> what an RSS infant should be gaining each month. I'm looking forward

> to hearing from you all... Thank you in advance.

>

> Pickett

[Guest guest]

Welcome ,

Not sure if I'm late here with responses and welcome but has your daughter been

seen by a geneticist? If not, have your pediatrician send you to one.

B

proudmommao2 wrote:

Hello everyone...

I'm and I believe my 3 month old has RSS. I was monitored

thru the pregnancy because my daughter was so small. She was born at

38 weeks weighing 3lb 15oz. Now she's 3 months weighing 7 1/2 pounds.

Her right side of her body is a bit smaller than the left, and her

right foot is turned out a bit, and her head is larger and is funny

shaped. But other than that she's a beautiful infant who's laughing

and cooing all the time. We go to the Shriners for her foot.. and I

was wondering what to ask the doctors to do so they can test for RSS.

I felt like i was wondering thru the forest of birth defects and

finally RSS made since for my daughter. I would enjoy knowing anything

at all... still very new to this. She eats well, but I was wondering

what an RSS infant should be gaining each month. I'm looking forward

to hearing from you all... Thank you in advance.

Pickett

[Guest guest]

Hi Terri,

My name is and I also have twins. My son Colin has RSS and his

twin sister does not. Colin had a g-tube placed at 7 mo. He is 5

years and 2 months and still uses it for about 50% of his calories.

I'm impressed that your daughter isn't using it anymore. The

nutritionist should be working with you to determine the number of

calories she needs each day.

Colin is in feeding therapy and has been since age 1. He sees a team

of two Speech Pathologists who specialize in feeding. One of whom

had a daughter with a tube. It is very helpful in introducing new

foods to Colin and getting him to expand his variety. But hunger

seems to be his big issue and we are having a hard time weaning him

off the tube. I thought we would be much further by this age than we

are.

Welcome to the group. You will find lots of twins here, both

identical and fraternal. Feel free to email me with any questions.

Colin (RSS, gtube) and Hayden - 5 years

Grant - 2 years

[Guest guest]

Hi Terri.

I'm Jeanie, Brockton's mom. Brockton was born 10 wks. early at 1 pound 9

ounces and 12 in. long. He is 18 mo. old today and weighs 17 pounds and is 27

3/4 in. long.

How much do your girls weigh now? Are you in Michigan? We're from Western NY

but I have a sister that lives in Kalkaska, MI. Brockton was diagnosed RSS in

November of 2005 by a geneticist at Strong Memorial Hospital in Rochester NY. so

we're still pretty new to this too. I also have a daughter. She will be 19

yrs. old on the 24th of this month.............MAN! Where does the time go?

Welcome to the group!

Jeanie

grace12803 wrote:

Hi, I am new to the group, just wanted to introduce myself and

daughter. I have twin girls born 1/28/03: Grace and Alivia. They

were 5 weeks early, but very small especially Grace: 3 1/2 lbs and 14

3/4 in. Immediatly the docs brought in genetics, but no one knew what

was wrong: big head, webbed toes, incurved fingers, small triangle

face. We went home, Grace wouldn't eat. We forced milk in her, she

puked. PT and OT were started. She wasn't growing, couldn't lift her

head. Finally switching peds, we got referred to Univ. of MI Genetics

and Endo. They came up with RSS, got g-tube May'04, tested negative

for RSS as most do, started GHT March '05. She has grown 4 1/4 in.

and 3 1/2 lbs in 9 mths which is so huge. Now what? We have stopped

using g-tube as of Jan. '06, but am not sure if that is right

decision. Average cal. a day is about 846 w/out tube. My nutrionist

has made little effort to help,has no opinion on using/ not using

tube. I don't know what else to do for her or if we are missing

something. Any advice on other areas to look into or docs?

Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2 mths,

21 lbs, 31 1/4 in, GHT)

[Guest guest]

Hi Terry,

Where in Mi. do you live. We live in NH but my wife is from Sterling

Heights/Utica. Her sister lives in Maple Rapids and her aunts and

uncles own farms in the Ruth area -- north of Port Huron.

Anyway, we have had over a dozen nutritionist and they have not been

useful at all.

My son averaged about 800 -900 calories a day when he was 3.

He has been on periactin since he was about 2. Periactin is an

anithistamine which is used as an appetite stimulant. For many is

works good - not great but OK. For some (about 30 %) is does not work

well at all. However, it might be worth a try. Many doctors do not

like to use it or don't believe it works so you might have to argue a

bit to get it. If you do make sure you get it as a liquid.

I hope this helps.

Ken M

>

> Hi, I am new to the group, just wanted to introduce myself and

> daughter. I have twin girls born 1/28/03: Grace and Alivia. They

> were 5 weeks early, but very small especially Grace: 3 1/2 lbs and

14

> 3/4 in. Immediatly the docs brought in genetics, but no one knew

what

> was wrong: big head, webbed toes, incurved fingers, small triangle

> face. We went home, Grace wouldn't eat. We forced milk in her,

she

> puked. PT and OT were started. She wasn't growing, couldn't lift

her

> head. Finally switching peds, we got referred to Univ. of MI

Genetics

> and Endo. They came up with RSS, got g-tube May'04, tested

negative

> for RSS as most do, started GHT March '05. She has grown 4 1/4 in.

> and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

stopped

> using g-tube as of Jan. '06, but am not sure if that is right

> decision. Average cal. a day is about 846 w/out tube. My

nutrionist

> has made little effort to help,has no opinion on using/ not using

> tube. I don't know what else to do for her or if we are missing

> something. Any advice on other areas to look into or docs?

> Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

mths,

> 21 lbs, 31 1/4 in, GHT)

>

[Guest guest]

Hi Jeanie, Thanks so much for the warm welcome. Grace(RSS) is 21

lbs. and 31 1/4 in. as of Dec 12 05 her last measurements. Alivia

her twin is 27-28 lbs and 36- 37 in., not sure exactly since she

doesn't get measured so often. Yes we are in Sturgis, MI about a mile

from Indiana. Terri

> Hi, I am new to the group, just wanted to introduce myself and

> daughter. I have twin girls born 1/28/03: Grace and Alivia. They

> were 5 weeks early, but very small especially Grace: 3 1/2 lbs and

14

> 3/4 in. Immediatly the docs brought in genetics, but no one knew

what

> was wrong: big head, webbed toes, incurved fingers, small triangle

> face. We went home, Grace wouldn't eat. We forced milk in her,

she

> puked. PT and OT were started. She wasn't growing, couldn't lift

her

> head. Finally switching peds, we got referred to Univ. of MI

Genetics

> and Endo. They came up with RSS, got g-tube May'04, tested

negative

> for RSS as most do, started GHT March '05. She has grown 4 1/4 in.

> and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

stopped

> using g-tube as of Jan. '06, but am not sure if that is right

> decision. Average cal. a day is about 846 w/out tube. My

nutrionist

> has made little effort to help,has no opinion on using/ not using

> tube. I don't know what else to do for her or if we are missing

> something. Any advice on other areas to look into or docs?

> Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

mths,

> 21 lbs, 31 1/4 in, GHT)

>

>

>

>

>

>

>

>

[Guest guest]

Ken, Thanks for the info. Grace's appetite is much improved since

begining the GHT. I wish someone would have recommended the

Periactin when she was an infant. She really struggles with drinking

milk now, we have to ask and ask her to finish it so she can have a

cookie or candy; basically bribe her. She drinks about 6 oz. milk a

day, perfers water. We live in Sturgis, MI about a mile from

Indiana. Thanks for the info.

Terri

> >

> > Hi, I am new to the group, just wanted to introduce myself and

> > daughter. I have twin girls born 1/28/03: Grace and Alivia.

They

> > were 5 weeks early, but very small especially Grace: 3 1/2 lbs

and

> 14

> > 3/4 in. Immediatly the docs brought in genetics, but no one knew

> what

> > was wrong: big head, webbed toes, incurved fingers, small

triangle

> > face. We went home, Grace wouldn't eat. We forced milk in her,

> she

> > puked. PT and OT were started. She wasn't growing, couldn't

lift

> her

> > head. Finally switching peds, we got referred to Univ. of MI

> Genetics

> > and Endo. They came up with RSS, got g-tube May'04, tested

> negative

> > for RSS as most do, started GHT March '05. She has grown 4 1/4

in.

> > and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

> stopped

> > using g-tube as of Jan. '06, but am not sure if that is right

> > decision. Average cal. a day is about 846 w/out tube. My

> nutrionist

> > has made little effort to help,has no opinion on using/ not using

> > tube. I don't know what else to do for her or if we are missing

> > something. Any advice on other areas to look into or docs?

> > Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

> mths,

> > 21 lbs, 31 1/4 in, GHT)

> >

>