Re: Introducing myself

[Guest guest]

Hello Tanja,

Welcome to our family. At the begining it takes some time to get

used to all of the emails but then it becomes habbit. You want to

know what is going on with everyone and you look foward to hearing

from them. This really is a great group of people that are always

here for you no matter what! Unfortunatly, I can not make it to the

conference either, I am hoping next year. I realy would love to

meet everyone in person!

I am 25 and live in Phoenix, AZ. I was diagnosed in Nov. 2002 with

EDS III. I pretty much have problems with all my joints, lately my

hips, ankles, and shoulders have been the worse. I am trying

physcial therapy to see if it helps. I also take MS Cotin and MSIR

for pain. Hopefully you will find something that works for you. It

takes a while before you find one that works and then sometimes it

just stops working and you have to find a new one. Good Luck.

Hugs,

Jen

[Guest guest]

Hi again and thank you all for answering my message. Elisabeth's

answer gave me a lot of new courage!

My IgAN is very much at it's early stage. My blood pressure is fine

(without any medication) and my kidneys are still functioning almost

100%. My biggest symptoms are abdominal pain and vasculitis (causing

Henoch-Schonlein purpura on the lower legs). Those symptoms come and

go and I only need medication when those occure (often after flu or

other infections).

I have thought this matter of pregnancy a lot and I think, as I

myself don't really understand my disease that well, that the best

thing I can do, is to trust my doctor (in the matter of pregnacy,

NOT with taking pred!). I actually already thought that they will

never give the permission and now that they did, how could I not

believe them and start trying! After all, that's what we've been

waiting for two years now!

Thank you all for vey encouraging words! That means a lot.

- Essi

[Guest guest]

Well, to be honest, I'm hoping more for " The World Weekly News " .

Pierre Lachaine wrote:,

So that wasn't you I saw on the cover of Globe, then.

Pierre

Re: Introducing myself

>

> Hi and welcome to you (I'd use your name but it's not available ;-))!

>

> Sorry you needed to find us, but glad you did. Since I have not been

pregnant (or you would all know me from the news - or at least the

tabloids), I cannot be of much service to you there. But I wanted to let you

know we're all here for you, and hope you find this group as wonderful as I

have.

>

>

>

> essipessi76 wrote:

>

>

> Hi there!

>

> I'm a new member in this group.

>

> I'm 28 years old woman and I was diagnosed with IgA two years ago

> (after various mis-diagnosis and running in different doctors). I'm

> coping well physically as my symptoms are still very lame and my

> kidneys are functioning well.

>

> My biggest " problem " is that we were planning pregnancy just before

> I got ill and now I finally got the permission to start trying again

> (well, that's not the problem ). The problem is that I'm very

> scared about all the things that might go wrong (with me or with the

> baby). Does anyone have experience on pregnancy with IgA?

>

> Although the doctors have given me the permission to get pregnant,

> I'm a bit doubtful.. What if my symptoms get worse and I can't start

> medication because of the baby...? Or what if I'm forced to abort

> the pregnancy to be able to start medication (I think I couldn't do

> that in no matter what!).

>

> My doctor said that for example Prednisol is safe for the baby but

> it says otherwise in the package. I'm so confused.

>

> Well, this was supposed to be an introducing mail but it came out to

> be like this... Thanks for reading

>

>

>

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

[Guest guest]

I love the poo-poo fairy but let's watch those initials - I'm sensitive (just

kidding!).

Signed Barbara Mellert :0)

--- You wrote:

BM success

--- end of quote ---

[Guest guest]

Hey, that is a great idea!!!!!!

Re: Introducing Myself

--- Barbara Mellert

wrote:

<< Bribery was what worked for us too - especially for

Sam. And his Pediatrician is who suggested it! So

everytime he pooped in the potty (and didn't use a

pull-up) we'd pay him a quarter. >>

I debated whether or not share this, but I couldn't

resist. We had a Poo-poo fairy (given the name by

Emma, in the vein of Tooth Fairy) visit each night

that there was a BM success. The fairy brought little

gifts ... a marble, small animal figurines. Worked

wonders for Emma. She was done getting nightly visits

in a week. And received a note and a special

last-time present. Emmett took a while. We started to

run out of things to get him. But he got it

eventually!

We're a weird a family now that I've read that back to myself.

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[Guest guest]

> It was ugly; he would

> actually request a pull-up, go into the bathroom, put on the pull-up,

> poop,

> then ask me to come in to wipe up.

>

>

>

>

My son, Caleb was the same way. I used to tell people that my son /was

/potty trained; that is, he could control himself, he was just choosing

to go in the pull-up rather than the potty. ;-)

We ended up bribing him with small toy airplanes; but we also had to let

him watch a favorite movie from the toliet. That seemed to help him

relax and stay on there long enough to go.

I do think that hearing loss might have somethng to do with it. My older

son was completely trained by about 3 1/2. (We bribed him also. We had a

" stinky jar " filled with favorite small items that he picked out at the

store.)

I also recommend the book " Everyone Poops " by Taro Gomi.

, 8, hearing

Caleb, 6, bilateral SNHL

[Guest guest]

Emery wrote:

I do think that hearing loss might have somethng to do with it. My older son was

completely trained by about 3 1/2. (We bribed him also. We had a " stinky jar "

filled with favorite small items that he picked out at the

store.)

I agree that the hearing loss may have something to do with them being late to

potty train. Other than " not being able to hear it " I'm not sure what it could

be. was 4 and a month when she potty trained, was trained at 2

3/4 years old (and they say boys are harder to train.....lol). Of course their

is one other reason I think it took so long to potty train. When she was

two and a half she would sit on the seat that sets on top of the toliet seat.

She was doing ok, but then one day she went to sit down " I do me " (meaning I do

it myself) Well she didn't sit down on top of it. Instead it slid backwards.

She had no idea it had happened so ended up giving herself a swirly (ie...she

fell in the toliet). As you can imagine it took awhile before we could get her

to try again. Til this day she is still a bit unsure of sitting on the big

toliets...especially the public ones where the seat has a tendency to " move "

Debbie, mom to , 6, moderate SNHL and , 3 hearing

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

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[Guest guest]

Stinky jar and Poo-Poo Fairy....those are great! I had the pretend

doctor call me on the phone right in front of , then 3, and he

heard this one-sided conversation of how he was supposed to sit on the

potty after every meal and read 2-3 of his favorites books. Pooped

everytime and never an accident since. Pretend phone conversations

work wonders in our house.

Now Grace is 3.5yo and not trained at all yet but my husband keeps

thinking that it's a good thing. Maybe no boy will want to date her or

take her to the prom if she's still in diapers!

Since she's still not hearing well and can't talk, we're not even

trying to train her. We'll be starting soon though.

Cherie

[Guest guest]

In a message dated 10/12/2005 12:08:30 A.M. Eastern Daylight Time,

cbagadiong@... writes:

Now Grace is 3.5yo and not trained at all yet but my husband keeps

thinking that it's a good thing. Maybe no boy will want to date her or

take her to the prom if she's still in diapers!

Oh that sounds like MY husband! discovered she could belch like the

boys -- Ian and his friends were at that lovely stage of belching and speaking

at the same time. I'd throw them out of the house when they started that --

told them pigs belonged in the yard, not my kitchen. And there was , a

pretty little girl with head full of strawberry blond ringlets trying (with

some success) to belch the alphabet. She was all of about 4.

My husband said if we could teach her to fart on command he would never have

to worry about dating. I was cooking at the time and threw a hot-pad at him.

I told him I was pretty sure he would not like boys who found those

behaviors attractive, so perhaps we should try to instill some more lady-like

behaviors. Just too funny.

-- Jill

[Guest guest]

--- Parentsofdeafhoh@... wrote:

<<this is hilarious! Cracked me up! Where were you

guys with all these potty ideas when my youngest was

going through that?>>

Isn't desperation the mother of invention?

__________________________________

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[Guest guest]

Hi Deganit,

My son's loss is also mild/moderate. He is nine and has done

exceptionally well in school and most settings. It is very easy to

overlook the effect that his hearingloss has on him. I agree that

Carol Flexer is a fabulous resource, expecially for providing

information to the teachers.

You are definetly in the right spot for great advice and support.

Welcome.

> >

> > Hi, all,

> >

> > I just wanted to introduce myself and tell my story:

> >

> > My daughter, now 15 months, was diagnosed through the newborn

> screening with mild/moderate bilateral sensorineural hearing loss.

> As is similar to many of the situations I've read about here, it

was

> a total surprise to my husband and I and we were thrust into this

> unfamiliar world of hearing aids, communication options, genetic

> testing, etc. etc.

> >

> > It turned out that my husband and I are both Connexin 26

> carriers (specifically the 167 del T mutation, almost exclusively

> found in Ashkenazi Jews). Being in Boston at the time, we were

lucky

> to have a lot of support and info available to us - though we had

> some frustrating experiences with the initial ABR (was very

> inaccurate, due to our 2 week old daughter being too awake and

> indicating a loss much greater than what it actually is...but

that's

> another story).

> >

> > Anyway, our daughter Jordan was aided at 5 months and we

> struggled through the process of finding ways to keep her from

> pulling the aids off (thank goodness for Hanna Andersson pilot

> caps!). We also began meeting with an AV therapist who gave us a

lot

> of support and advice.

> >

> > This past October we moved to Savannah, GA to be closer to

> family (and for the weather, lower cost of living, etc.), and this

> coincided with an explosion of language on Jordan's part - which

> hasn't stopped yet! - and she's just doing great. She's also

finally

> stopped pulling her aids off, so that's been a big relief as well.

> >

> > I've met and talked to lots of parents who have children with

> hearing loss (especially because there were many in the Boston

area)

> and I've always known about this listserve - but it's taken a

while

> for me to feel comfortable and ready to go public online - it just

> feels so impersonal. But I feel very isolated here in Savannah

where

> there really isn't a parent support group and it's just very

> different from Boston, so I need a support group somehow and it

> looks like this listserve is a wonderful source of support and

> advice.

> >

> > Sorry for rambling, and I look forward to trading stories,

> suggestions, pieces of advice, etc. And if anybody knows more

about

> Savannah resources or people than I do, as well as info and links

on

> the Connexin 26, 167 del T mutation, please do let me know.

> >

> > Thanks so much,

> > Deganit

> > mom of Jordan, 15 months, mild/moderate hearing loss

> >

> >

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

> >

> > What are the most popular cars? Find out at Yahoo! Autos

> >

> >

[Guest guest]

Puneet,

Welcome to the group Puneet. Hopefully your

family will handle the news of your diagnosis okay. I really have little

advice. My family handled the news of my son’s diagnosis with very

little understanding. They seemed to think I was overreacting.

Ultimately the most important person will be your wife and since she is supportive

you are in good hands.

Since I have a child with this the stress for him is

different, but it is there. I am sure he might have some fears. He

has been blessed with a great sense of humor though.

Welcome to the group.

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)