Introduction

[Guest guest]

Hi, My name is Kim and my 7 month old son Jack has CF. We are in KY too.

Are you at Ft Knox?We live in Louisville in the Highlands. Jack was

diagnosed at 4 weeks and has been responding well to the treatments. He

weighs 17 1/2 lbs and has yet to have any respiratory problems. What clinic

are you going to? I hope Elijah has gained some by now. I know things can

be very scary. Write back if you want, you are the first person from KY

I've seen here.

Introduction

>From: Lvmyav8r@...

>

> HI my name is katy and my husband's name is we have 3 children that

>are 8,3and almost 8 months. My 3 yr old and 8 month old have CF , Micah was

>dignosed at 14 months old and started out having a bad time of it but for

the

>lastn6 months he has been doing pretty good. Elijah though has had a ruff

time

>of it He has been in the hospital 5 times already and we just got out 2

weeks

>ago in a 4 week stay. He just won't gain the weight he is on a G tube now

and

>if there still is no weight gain ( which there hasn't been yet) By the 26th

>the Drs are going to be putting in a central line to feed him. This is a

very

>scary thing for us We lost a son already at 13 months old and things that

>elijah is doing is heading that same direction and it does scare us some.

> My husband is in the Military and is a pilot So we move to diffrent

parts

>of the country all the time. we are in KY right now and tryin to get our

care

>back over to Birmingham alabama right now. well I think that is a great

start

>talk at you later

> Katy

>

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

>Is ONElist important to you? Come to our new web site and share with

>us your stories. http://www.onelist.com

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

>The opinions and information exchanged on this list should in no way be

construed as medical advise. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING

ANY MEDICATIONS OR TREATMENTS.

>

[Guest guest]

In a message dated 2/23/99 6:57:53 AM Central Standard Time,

venc397@... writes:

<< Hi, My name is Kim and my 7 month old son Jack has CF. We are in KY too.

Are you at Ft Knox?We live in Louisville in the Highlands. Jack was

diagnosed at 4 weeks and has been responding well to the treatments. He

weighs 17 1/2 lbs and has yet to have any respiratory problems. What clinic

are you going to? I hope Elijah has gained some by now. I know things can

be very scary. Write back if you want, you are the first person from KY

I've seen here. >>

Kim

YEs I " m in Ky well if I go to my Bedroom I'min Ky if I got to the

kitchen I " m in Tenn hehehehe. Man you are such a answer to prayer for me , Do

you get your care at the childrens hospital where you arewe are thinking about

trying that childrens hospital out. Don't believe it when they tell you

vandiberbilt is a great hospital for CF kids I guess sence one of theyre Dr's

have gone it has really gone down hill. We are looking into going to the

childrens hospital by you or the one we just came from in Birmingahm.

Katy

[Guest guest]

Hi all,

I thought I'd also send a note to say hello and introduce ourselves. My

name is , my husband is , and we have two teenagers, Nick (16) and

(15). has CF. In her 15 years, she has been on almost every

brand of enzymes, all kinds of oral antibiotics,she's had IV's at home and

in the hospital, 10 sinus surgeries (some more complicated than others), a

tonsilectomy/adnoidectomy, ear tubes 3 times, 3 bronchoscopies, 4 bowel

obstructions, 1 endoscopy, and a ph study. Not to mention a visit to Peds

ICU for a serious electrolyte deficiency, which resulted in kidney damage

(this was caused by too high of a dose of IV tobramycin).

She's currently on inhaled albuterol, intal, pulmozyme, tobi, and flovent,

and she takes orally enzymes (ultrase MT 20's at the moment, but switching

to Creom 10), ADEKS, calcium, pottasium, ibuprofen, zantac, Allegra,

dimetapp, colase and fibercom. She just finished a 10 day course of

levaquin for a chest infection. She is also on saline and flonase nasal

sprays.

She has asthma, allergies and mild reflux as well as her CF. But all in

all, she is very healthy, is a normal weight for her height, and attends

school fulltime. She is the ninth grade in High School, is an honors

student and takes regular PE.

Over the years she has had pseudomonas aureginosa, aspergillus, staph and

xanthomonas maltiphilia. The aspergillus seems to be gone (she took

prednisone and Sporonox for 3 or 4 months for this), the staph comes and

goes and the pseudo and maltophilia seem to be here to stay. She got the

maltophilia about 2 years ago, I am pretty sure she got it from a hospital

stay. However she hasn't had too many problems for it and her lung

functions are excellent, usually over 100 % of predicted.

So she's been through a lot, but she has done well. Her brother is well

also, he has a touch of asthma but is mostly very healthy. He is a star on

his school track team, and is thinking of trying to get into the Air Force

Academy. He is taking a trip to Germany this summer with his German class.

We are all excited about that! Wish we could all go!

Anyway, I guess that is enough for now. I am excited about this list, being

smaller I hope to get to know everyone better. I have been on cystic-l

since June 1995, and conncoll list since the beginning so I know lots of

people, but those lists (especially cystic-l) are bigger than I would like,

and its hard to get to know people very well.

Oh, and for 's mom, I wish I had some hints for you, but my daughter

is 15 like I said, and she STILL hates coughing stuff up. She pretty much

refuses to do it, she is very stubborn as well as smart, and nothing I can

say convinces her she'd be better off spitting it out. She's been lectured

by her docs and respiratory therapist, and she still refuses, she'll do it

for a culture but that's about it. And we usually have to give her a

treatment with hypertonic saline for that. SIGH teenagers.....

love to all,

Oh PS: we live in Orange CA, and go to the CF center at Childrens

Hospital in Long Beach.

[Guest guest]

I take Aleve for my headaches and it really works. Also, try herbal teas,

and drink extra water!! Good Luck!

Chris

[Guest guest]

Hello Heidi and welcome ot the list! I didn't eat the shakes during

induction. I ate a lot of eggs and bacon, meats, cheeses and salads. It

doesn't look like you have a lot to lose so the weight may come off more

slowly for you! Good luck!

In a message dated 8/14/99 8:46:27 AM Eastern Daylight Time, djkppl@...

writes:

<<

Hello!

My name is Heidi and I started low carbing again last Monday. My energy

level has returned!

I low carbed oct-til about Jan. of 99 and somehow fell off the wagon. I

gained 11 lbs. since then and

so far have taken off 2 of those 11-

I enjoy all of your helpful hints, tips, etc.

I'd like to know how many of you used Atkins products-Shake mix during

induction or any other protein powder-and had success-I called the 800# on

the can of Atkins shake mix and was told that I could use it during induction

as l0ng as i counted the carbs- same goes for their advantage bars-use during

induction or not.. Terrible or not, but I trust you peoples opinion more than

the little girl that answered the phone at Atkins.

Heidi

144/142 1/4/140 (first goal)/135

djkppl@... >>

[Guest guest]

Hi Hiedi,

Welcome! I use Atkins shake mix, Chocolate, for breakfast. I make it by

using ½c heavy cream ½c water, some ice cubes and sweetener in a blender. I

really like it that way. it is 4.3 carbs that way though. I tried Atkins bars

and they are ok, nothing to write home about. The Atkins baking mix is not

good for making the bread but I am planning on trying other uses for that.

hope this helps!!

Penny

173/162/130

Visit my family at: <A

HREF= " http://www.geocities.com/heartland/pines/6116/wilson.html " > Home

Page</A>

[Guest guest]

>

>Reply-To: graves_supportonelist

>To: graves_supportonelist

>Subject: Introduction

>Date: Wed, 11 Aug 1999 20:53:20 -0400

>

>

>

>Hello all. I'm one of those old timers with Graves' who has been >around

>the Internet seeking information and sorting truth from >fiction for

>several years. My story exists on a couple of sites, so >I won't go into

>it here.

I've read your story at DeeCee's (Diane W?) site.

>Suffice it to say that my thyroid levels are more or less stable at

> >present and I check in to groups like this one to keep up on new

> >theories and offerhelp or ideas. I still learn a lot from my fellow

> > " Gravesians! " I also believe that the medical profession has >benefitted

>from our sharing. Some of our observations seem to have >sparked informal

>trials among practitioners which have proved >fruitful. I hope that this

>can continue.

So do I.

>I'm also hoping that this will be a refuge from censorship and a >source of

>mutual support.

That's why we have moved here. It appears that some kind of things cannot be

openly said on the other board.

>I'll be frank, and say that I think it is important for peer support

> >groups like this one to be vigilant that -- pharmaceutical company

> > " sponsors " , doctors and large endocrine associations with agendas,

>and people who hope to profit financially from membership fees and >sales

>of educational materials which should remain in the public >domain -- be

>excluded from power over the free flow of information. >Although it's not

>illegal, it seems to me unethical to profit from others who suffer from

>Graves'.

Sure, Redhen. I agree.

>I practically cried with joy on first finding people on the Internet >who

>could verify the symptoms of Graves'. Some of you may have had >the same

>experience. It is the one-to-one sharing and personal >contact that has

>helped me cope. I am fully capable of sifting and >sorting truth from

>fiction and don't need an official to do it for >me.

Yes, we are all grown up people, and tutorships and censorships should be

kept away. I even claim for the right of making mistakes, but *on my

account*.

>There will always be mistaken " information " offered, but that should >be

>the opportunity for discussion and (yes) polite argument to get to >the

>truth.

Yes. Four eyes can see further than two eyes, and kind of polite argument is

always constructive. Sharing information, brainstorming, polite argumenting

are useful. And far from that " me/this or deluge " !...

>If I'm in the wrong group, please let me know now and I'll look >elsewhere

>for support and sharing of ideas. If I'm among friends, >let me know.

>Redhen

Redhen, in my opinion you're among friends, and I hope I'm also among

friends.

Regards.

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

[Guest guest]

>Redhen, in my opinion you're among friends, and I hope I'm also among

>friends.

>

>Regards.

>

Thanks, . I needed to hear that.

[Guest guest]

- Welcome to the list. I knew you'd fit right in the minute I read

your post on Epinions. I don't know if I told you but was dxed at 3

and a half. It took a lot of begging on my part too. I can;t believe you

had such a fight and you had a family member with CF! Kathy G. (Mom to

5 w/CF, 2 no/CF)

[Guest guest]

Hi ,

Welcome to the list. I'm glad to hear that Geoffrey is doing well! You

must have wanted to wring some necks when you finally found out that

Geoffrey has CF after pushing to have him tested for so long. My daughter

was also diagnosed when she was four (last April), and she's doing well. We

had been told that there was absolutely no way Meagan had CF (she has a very

atypical case-- she's pancreatic sufficient with a negative sweat test), but

after we did carrier testing and found out that we have 2 mutations in the

family, we tested Meagan and sure enough she has both of them.

What part of the country are you from? We're in Madison, WI.

, mom of Meagan 5 (cf, asthma) & Kailin 7 (asthma)

[Guest guest]

,

Welcome to the list.

I am Jennie, mom to 2 little ones with CF. You will like it here, I think.

Oh, and the appetite thing, I have a 2 yr old that out eats all the older

kids--and she starts eyeing their food after she finishes hers (she always

makes a " happy plate " first and is proud to announce it, they all know if

they want to keep their food, move their plates out of reach. On the other

hand, if they hate it, they can usually be caught giving it to her. She

generally eats everyone elses carrots and 's tater tots...)

Take care,

Jennie mom of ph 7 months (RAD and GERD, not tested yet for CF); Mallory

2 with CF, RAD, GERD; 4 with CF; 5; Miranda 8; Brittany 7 yo

foster daughter; a 3 yo foster daughter oh, also aunt of 3 yo

with CF (but hey, this one I don't have to feed....)

[Guest guest]

Thanks to everyone! I guess I should introduce all my family.

My hubby Geoff Sr. is 35, I'm 30, Chelsea will be 13 next month

(stepdaughter), is 11, Ashlee will be 11 next month

(stepdaughter) & of course, Geoffrey Jr. is 8 1/2.

We live in Oregon, & our girls live with their mom in Elroy, Wisconsin.

--

***********************************

Andromedia (aka ) @--}--}--

[Guest guest]

Hello all, allow me to introduce myself. My name is , and I'm 27

years old, married for 2 years, (just celebrated our anniversary on

12-30-00) with no children as of yet, I'm in the process of beginning

my crusade with WLS surgery, I'm in the beginning stages, will see my

PCP in the beginning of march.

I have been trying to get pregnant for about 5 years, with no

success. I have been reading many post and feel as if my infertility

is also due to my weight. I have also read about PCOS and would like

to know if anyone can direct me to any sites to learn more about it.

I have been without my period for about 8 months and my OB/GYN says

its due to my rising weight.

I want to be a Mom in the worst way, I think I need to get healthy

first. For the ladies that have had babies after WLS surgery did you

have any complication? Did you get pregnant right away? I have heard

it said, you become more fertile after weight loss, have any of you

found that to be true?

Well I look forward to reading all your post, and making new friends!!

Hugs,

~i~Mommy to a little angel in Heaven.~i~

[Guest guest]

Hi Meloni!!!!

Welcome to the list and " family " . Looking forward to getting the chance to

talk to you and hear all about Madison. What state are you in?

Tia (mom to age 14 1/2)

[Guest guest]

Note: forwarded message attached.

[Guest guest]

Note: forwarded message attached.

[Guest guest]

Hey Michele!

Thanks, I will have to look back at Aubrie's history. How old is she?

I am sure hoping to get rid of the G-tube, he does take everything by

mouth and has a bad gag reflex that we are working with. He takes a

one med. and I have started putting it in his cereal/fruit in the a.m. but,

he had surgery yesterday and the Dr. put him on a antibiotic and giving

that to him by G-tube. Any suggestions on how to get him to take meds

by mouth easier?

We did a hearing test in May and showed he had Fluid in his ears, so the

Dr. put tubes in and that has made all the difference in the world!

We were worried about him talking and still a little bit today, but I think he

has been working so hard with his motor skills and now his speech is starting

to come around. He has a O.T. and Speech therapist that have been so helpful!

Michele Westmaas wrote:

Hi, !

Welcome! If you've been on for a week or so, then you've seen my recent posts

and know a bit about Aubrie's history. I won't repeat that again, but I do want

to welcome you! r sounds wonderful! Aubrie had her Gtube removed at about

1.5 yrs as well. Does r hear ok? It's fabulous that he's talking a bit

already!

Michele W

Aubrie's mom

[Guest guest]

Meloni and Jodi, Thank you so much for the eye info. Whitney is 5 weeks old

and still in the NICU working on feedings. The eye Dr. in the hospital said

that she wouldn't start eye exams until 3 months old. I would like to know

much sooner about her vision issues. How old where your CHARGEr kids when they

were seen by an ophthalmologist? Thanks, Whitney's MOM

[Guest guest]

r had surgery May 8th 2003. We have noticed a difference because

before the surgery he would tilt his head to the side when looking at

something and after the surgery he no longer did that. We were glad

he had it done. Someone made the comment that their Ophthalmologist

waits to do the eye muscle surgery at around 2 or later. r only has

lower tear ducts and has had 3 surgery's on them ( dilating and tubes)

so maybe that is why the Dr went ahead with it.

I hope that helps!

wellsjdan@... wrote:

, that is so interesting about the eye surgery. How long ago did

r have that, and have you noticed any difference yet? We haven't gotten

that

far yet. We know that she has deformities on her retina and so I'd like to

find out what can be done. Whitney's MOM

[Guest guest]

Michele,

Thank you so much for the information! I am hoping at r's 18 mo check up

the Dr. will okay to get rid of the G-tube. r sees ENT in October and I

will ask about another hearing test. Yes, I have been signing with r and he

waves hi and bye bye and think he is getting the hang of it. I think he is

trying to more. A Speech Path. has just started seeing r and hoping that

will help. Does Aubrie still see a Speech therp or Path?

r's mom (16 mo.)

Michele Westmaas wrote:

-

Aubrie is 5 years old. I do remember that meds were the biggest inconvenience

after we removed the Gtube. I think we just held her down (you know, held her

lips and head) and squirted or poured it in. Like you do with typical kids who

don't want to take their meds. It wasn't long before she was cooperating well

with meds. Aubrie doesn't have a daily med so that helped a lot. The ped is

good about using the best tasting option whenever we need a medication. And

Aubrie is extremely agreeable and cooperative about most things.

I remember being worried because I didn't want her to choke on meds that she was

resisting. Even typical kids will sputter a bit when given meds sometimes.

This never became a problem, but Aubrie never did have a problem with

aspirating.

I'm so glad the ear tubes have helped. Have you been able to get definitive

hearing testing done? I was frustrated because it took us until Aubrie was 3 to

figure out how much of a hearing loss she had and get her fitted for aids.

Until that time, she seemed to hear quite well functionally and we just couldn't

get test results that we felt were reliable enough to use in aiding. Now she's

a whiz at the hearing tests. I know we got her aids as soon as we could, but I

wonder how much her hearing loss interfered with her early development.

Are you signing with r? We did in the beginning because we didn't know how

much she could hear and didn't know if she'd ever speak well enough for all of

her communication. Speech in CHARGE is such a complicated issue. Signing

allowed Aubrie to demonstrate her understanding to me long before she could do

so with speech. I learned to sign her favorite book. When we'd read it

together, she could sign to me " what will happen next " , " who is that " and other

questions that you would ask a child as you are sharing a story. She could ask

for specific books by signing. Without signing, she would never have been able

to communicate those things. I think that those early communications are

critical to concept developement. We no longer sign, but I wish we did. We use

just a bit for clarification here and there, but are considering adding more

back into our vocabulary. It's funny because Aubrie prides herself on being

able to sign, but she doesn't realize that she really doesn't

remember much.

Michele W

Aubrie's mom

[Guest guest]

Sue-

I've been away for a few days so I'm a bit behind on things. My daughter,

Aubrie, is only 5but I wonder when she'll begin to understand her differences.

It's so interesting to know that wants to know others like himself. I bet

he'd love attending the next CHARGE conference! It's an indescribable, powerful

experience to meet other families and individuals with CHARGE.

We are just beginning to research ear surgery. Aubrie's ears look " normal "

except she has floppy pinnae. It looks like they'd be fine if they could just

be " pinned " back, but from a brief consultation with the surgeon, I understand

that it will be much more complicated than that. I'll be sharing more on the

list as we address this issue. I look forward to hearing what you learn.

Welcome!

Michele W

mom to Aubrie (5 yrs) CHaRgE and (11 yrs)

Introduction

Hi, I have a son,, who is 11 with CHARGE or as the doctors put it

" partial CHARGE " . Then later they said they weren't sure. Anyway, when

was a

baby he ran alot of temperatures in the hospital but he was fine. As soon as

they would pull off his clothes he would cool right down. In the winter, I

had to keep him in t-shirts, if I put him in sweatshirts or sweaters, he would

sweat alot. In the summer he sweats more than any kid I know. We've gotten

used to it, I guess.

had heart surgery when he was 3 months old, he had a tube also for

feeding the first few months, then we went with the g-tube. I think he started

eating orally close to 1 year old. He's had a trach at 2-3 yrs old for sleep

apnea. He has facial palsy, no left thumb, one kidney, no hearing in his left

ear and only an ear lobe (microtia). He had all speech & physical therapist

when he was a baby to help him catch up. Now it seems like a lifetime ago! I

started reading this site because my son said to me that he wanted to meet

someone like himself. I find myself reading about what everyone is going

through

and my heart and prayers go out to everyone. I haven't been through all of

it, but alot I have and I know it can be frustrating, but the results are

priceless. I'm here for support and also to learn more. I don't always get

on the

computer as much as I'd like (who does!), but I try to keep up with the site.

I do have one question, has anyone had experience with plastic surgery of the

ear (microtia)? I would really be interested.

Thanks & God Bless

Sue ,mom to Sott 11 (charge)

[Guest guest]

I need this info too. Please post it to the list when you get back home and

have time to do so. In the meantime, I hope things go well for your Mom and

that she's healthy again soon.

Michele W

Aubrie's mom

Re: Introduction

Sue,

I have a name of a SUPER-HIGHLY-RECOMMENDED ear plastic surgeon. He's

supposed to be the best!!! He's based in California. Unfortunately I don't

have the

info on me right now. I'm currently in North Carolina with my family - my

mother is in critical care and about to undergo 5-bypass heart surgery. I'm

not

sure when I'll be home in DC, probably next week sometime. Please keep my

email

address and stay in touch with me so that I can get this name and number for

you.

Rosie