Introduction

[Guest guest]

dear Mandy,

I always feel so sad for you youngin's who get stills. I was in my 40's when

I was forced to meet the dragon (stills disease) and was able to enjoy my

20's and 30's as much as anyone can enjoy them.

Do not think about being alone. I am another Still's person who got married

AFTER getting stills. He's a wonderful man who sticks by me through

everything. Being sick didn't make as much difference in finding someone for me

as

learning to love me just the way I am. When I finally learned to do that, there

was no one out there who didn't want to see what I was all about. I became

fascinated by me, and so were others. Self discovery is an interesting journey

that will very often become contagious to others.

Mandy, make sure to read the spoon theory, I believe it's on the stills

sight. If not, I'll email you a copy. It has helped me so much and so many

times.

Take care sweetie.

carole from Hollywood FL

In a message dated 3/28/2008 2:42:31 P.M. Eastern Standard Time,

mandy.sanders22@... writes:

Jessie Wisniowski <_jessie.wisniowski@..._

(mailto:jessie.wisniowski@...) > wrote:

Jessi,

Hi, I am 22 years old, and since you are around my same age I was just

wondering if you had a hard time dealing with this disease? I thought I was

strong

and could just go on with my life. But lately it's a lot easier said then

done. I get so angry that I am sick and I know there are people who are sicker

or in worse pain. I am just afraid that I don't know maybe I will be alone

forever because I have a cronic disease. So I guess I was just wondering if you

ever have those feelings or did? Thank you for your help. I hope you have a

great day

Mandy

>

>

>

>

[Guest guest]

dear Mandy,

I always feel so sad for you youngin's who get stills. I was in my 40's when

I was forced to meet the dragon (stills disease) and was able to enjoy my

20's and 30's as much as anyone can enjoy them.

Do not think about being alone. I am another Still's person who got married

AFTER getting stills. He's a wonderful man who sticks by me through

everything. Being sick didn't make as much difference in finding someone for me

as

learning to love me just the way I am. When I finally learned to do that, there

was no one out there who didn't want to see what I was all about. I became

fascinated by me, and so were others. Self discovery is an interesting journey

that will very often become contagious to others.

Mandy, make sure to read the spoon theory, I believe it's on the stills

sight. If not, I'll email you a copy. It has helped me so much and so many

times.

Take care sweetie.

carole from Hollywood FL

In a message dated 3/28/2008 2:42:31 P.M. Eastern Standard Time,

mandy.sanders22@... writes:

Jessie Wisniowski <_jessie.wisniowski@..._

(mailto:jessie.wisniowski@...) > wrote:

Jessi,

Hi, I am 22 years old, and since you are around my same age I was just

wondering if you had a hard time dealing with this disease? I thought I was

strong

and could just go on with my life. But lately it's a lot easier said then

done. I get so angry that I am sick and I know there are people who are sicker

or in worse pain. I am just afraid that I don't know maybe I will be alone

forever because I have a cronic disease. So I guess I was just wondering if you

ever have those feelings or did? Thank you for your help. I hope you have a

great day

Mandy

>

>

>

>

[Guest guest]

dear Mandy,

I always feel so sad for you youngin's who get stills. I was in my 40's when

I was forced to meet the dragon (stills disease) and was able to enjoy my

20's and 30's as much as anyone can enjoy them.

Do not think about being alone. I am another Still's person who got married

AFTER getting stills. He's a wonderful man who sticks by me through

everything. Being sick didn't make as much difference in finding someone for me

as

learning to love me just the way I am. When I finally learned to do that, there

was no one out there who didn't want to see what I was all about. I became

fascinated by me, and so were others. Self discovery is an interesting journey

that will very often become contagious to others.

Mandy, make sure to read the spoon theory, I believe it's on the stills

sight. If not, I'll email you a copy. It has helped me so much and so many

times.

Take care sweetie.

carole from Hollywood FL

In a message dated 3/28/2008 2:42:31 P.M. Eastern Standard Time,

mandy.sanders22@... writes:

Jessie Wisniowski <_jessie.wisniowski@..._

(mailto:jessie.wisniowski@...) > wrote:

Jessi,

Hi, I am 22 years old, and since you are around my same age I was just

wondering if you had a hard time dealing with this disease? I thought I was

strong

and could just go on with my life. But lately it's a lot easier said then

done. I get so angry that I am sick and I know there are people who are sicker

or in worse pain. I am just afraid that I don't know maybe I will be alone

forever because I have a cronic disease. So I guess I was just wondering if you

ever have those feelings or did? Thank you for your help. I hope you have a

great day

Mandy

>

>

>

>

[Guest guest]

you don't need to heat the milk to make yogurt. we discussed this recently and

you can

search the archives.

>

> Hello!

>

> My name is , and my email address is valq22003@... We

> moved to Bristol, TN last month from Abingdon, VA, where we lived for

> 4 years. Prior to that we lived in FL about 30 years, and before that

> NJ.

>

> I am more of a " wanna-be " consumer since I've only just gotten raw

> milk once, and feel it may be a hit and miss thing. It is illegal in

> TN to sell raw milk unless for pets.

>

> When I got sick for the third time in 1-1/2 months, suddenly I

> remembered Kefir. I never tried it but had read about it some years

> ago. I started reading about it again and decided I REALLY wanted to

> start making it. Through the Kefir group a few weeks I found a

> wonderful young mother right in my own area who gave me some Kefir

> grains, and I am very happy with it. Since then I started getting

> interested in Kombucha, and I believe this same woman is going to give

> me a Scoby. Yesterday I started getting interested in Yogurt, though

> from what I read it seems you need to heat the milk, and I read

> elsewhere that will destroy the nutrients. So...I am confused about that.

>

> Anyway, I am just trying to learn everything I possibly can at this

> point so that I can hopefully start putting my health back together.

> Looking forward to being a part of this list,

>

>

>

[Guest guest]

you don't need to heat the milk to make yogurt. we discussed this recently and

you can

search the archives.

>

> Hello!

>

> My name is , and my email address is valq22003@... We

> moved to Bristol, TN last month from Abingdon, VA, where we lived for

> 4 years. Prior to that we lived in FL about 30 years, and before that

> NJ.

>

> I am more of a " wanna-be " consumer since I've only just gotten raw

> milk once, and feel it may be a hit and miss thing. It is illegal in

> TN to sell raw milk unless for pets.

>

> When I got sick for the third time in 1-1/2 months, suddenly I

> remembered Kefir. I never tried it but had read about it some years

> ago. I started reading about it again and decided I REALLY wanted to

> start making it. Through the Kefir group a few weeks I found a

> wonderful young mother right in my own area who gave me some Kefir

> grains, and I am very happy with it. Since then I started getting

> interested in Kombucha, and I believe this same woman is going to give

> me a Scoby. Yesterday I started getting interested in Yogurt, though

> from what I read it seems you need to heat the milk, and I read

> elsewhere that will destroy the nutrients. So...I am confused about that.

>

> Anyway, I am just trying to learn everything I possibly can at this

> point so that I can hopefully start putting my health back together.

> Looking forward to being a part of this list,

>

>

>

[Guest guest]

you don't need to heat the milk to make yogurt. we discussed this recently and

you can

search the archives.

>

> Hello!

>

> My name is , and my email address is valq22003@... We

> moved to Bristol, TN last month from Abingdon, VA, where we lived for

> 4 years. Prior to that we lived in FL about 30 years, and before that

> NJ.

>

> I am more of a " wanna-be " consumer since I've only just gotten raw

> milk once, and feel it may be a hit and miss thing. It is illegal in

> TN to sell raw milk unless for pets.

>

> When I got sick for the third time in 1-1/2 months, suddenly I

> remembered Kefir. I never tried it but had read about it some years

> ago. I started reading about it again and decided I REALLY wanted to

> start making it. Through the Kefir group a few weeks I found a

> wonderful young mother right in my own area who gave me some Kefir

> grains, and I am very happy with it. Since then I started getting

> interested in Kombucha, and I believe this same woman is going to give

> me a Scoby. Yesterday I started getting interested in Yogurt, though

> from what I read it seems you need to heat the milk, and I read

> elsewhere that will destroy the nutrients. So...I am confused about that.

>

> Anyway, I am just trying to learn everything I possibly can at this

> point so that I can hopefully start putting my health back together.

> Looking forward to being a part of this list,

>

>

>

[Guest guest]

Thanks so much to those of you who wrote regarding my quandary about

heating milk for yogurt. I have been reading the archives on this

subject. Quite enlightening!

> you don't need to heat the milk to make yogurt. we discussed this

recently and you can

> search the archives.

[Guest guest]

Thanks so much to those of you who wrote regarding my quandary about

heating milk for yogurt. I have been reading the archives on this

subject. Quite enlightening!

> you don't need to heat the milk to make yogurt. we discussed this

recently and you can

> search the archives.

[Guest guest]

Hi All; I am new to the group. My 16 y/o son just was diagnosed with IgG

def. and we are beginning IVIG on July 1st. Wow very soon. He has been very

ill over the past year-enlarged spleen, tons of GI symptoms - can't keep on

weight. This past year has well been a nightmare. The Doc says after (2)

infusions he will probably be a good candidate for subQ (sp?). We are

seeking information on experiences with IVIG. Have all the info from IDF

and many other people have provided helpful info. He has been too ill to

attend school this year and part of last -that's a whole other story. We

are just trying to deal with the day to day stuff at this point and hanging

on by a thread. Thanks for listening.

Darla - Mom to JT -16 y/o

Central Texas

SAD-IgG Def.

[Guest guest]

Hi!

Welcome! We did IVIG for a little over a year as my daughter was to skinny

for SCIG but as soon as she gained enough we switched and love it!

Re: Introduction

> Hi All; I am new to the group. My 16 y/o son just was diagnosed with IgG

> def. and we are beginning IVIG on July 1st. Wow very soon. He has been

> very

> ill over the past year-enlarged spleen, tons of GI symptoms - can't keep

> on

> weight. This past year has well been a nightmare. The Doc says after (2)

> infusions he will probably be a good candidate for subQ (sp?). We are

> seeking information on experiences with IVIG. Have all the info from IDF

> and many other people have provided helpful info. He has been too ill to

> attend school this year and part of last -that's a whole other story. We

> are just trying to deal with the day to day stuff at this point and

> hanging

> on by a thread. Thanks for listening.

>

> Darla - Mom to JT -16 y/o

> Central Texas

>

>

> SAD-IgG Def.

>

>

>

[Guest guest]

Welcome Darla, I am in Tulsa!!! The GOOD news is that your son will be feeling

better soon. IVIg will improve his health over the next 6 mo. My son started

IVIg when he was barely 4 and we waited much to long to get him started. He is

now 12 and we have been on Sub Q for almost 2 years. He gets to do EVERYTHING a

normal kids gets to do. His energy level is excellent and he rarely gets sick.

He had horrible allergies, GI problems, anemia, malaise and incessant sinus and

lungs infections that did not heal without IV antibiotics. HE WAS MISERABLE. I

feel so blessed to have him in a different state of health. I am glad that your

doctors are willing to look at Sub Q because it is much less invasive in my

opinion and the side effects are almost insignificant. We did do IVIG for 6

years and I am very glad we did but Sub Q is wonderful. We do it early every

Monday morning and my son sleeps through it. Feel free to ask more questions as

you think of them.

BARBIE

Re: Introduction

Hi All; I am new to the group. My 16 y/o son just was diagnosed with IgG

def. and we are beginning IVIG on July 1st. Wow very soon. He has been very

ill over the past year-enlarged spleen, tons of GI symptoms - can't keep on

weight. This past year has well been a nightmare. The Doc says after (2)

infusions he will probably be a good candidate for subQ (sp?). We are

seeking information on experiences with IVIG. Have all the info from IDF

and many other people have provided helpful info. He has been too ill to

attend school this year and part of last -that's a whole other story. We

are just trying to deal with the day to day stuff at this point and hanging

on by a thread. Thanks for listening.

Darla - Mom to JT -16 y/o

Central Texas

SAD-IgG Def.

[Guest guest]

Hey Darla,

We ahve all been there. It does get better! LOL My son is 12 and does SubQ. He's

actually doing it right now. You can read his story at

www.caringbridge.org/visit/alexsmith

@...: redbaron@...: Fri, 27 Jun 2008

12:43:10 -0500Subject: Re: Introduction

Hi All; I am new to the group. My 16 y/o son just was diagnosed with IgGdef. and

we are beginning IVIG on July 1st. Wow very soon. He has been veryill over the

past year-enlarged spleen, tons of GI symptoms - can't keep onweight. This past

year has well been a nightmare. The Doc says after (2)infusions he will probably

be a good candidate for subQ (sp?). We areseeking information on experiences

with IVIG. Have all the info from IDFand many other people have provided helpful

info. He has been too ill toattend school this year and part of last -that's a

whole other story. Weare just trying to deal with the day to day stuff at this

point and hangingon by a thread. Thanks for listening.Darla - Mom to JT -16

y/oCentral TexasSAD-IgG Def.[Non-text portions of this message have been

removed]

_________________________________________________________________

Earn cashback on your purchases with Live Search - the search that pays you

back!

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[Guest guest]

Hi Darla, sorry your son has been going through so much. Mark has

been on IVIG since he was 3 months old. He does really well, with

few side effects. Actually, we send him to school in the afternoon

after his infusion!

Typically after IVIG they might feel tired/achy/headachy/low grade

fever sort of thing. It can take a couple months for the IVIG to go

in and " zap " all the bugs laying in there, if you know what I mean.

That can make them a little tired and achy.

Mark used to be premedicated with tylenol before an infusion--since

he has no side effects, we don't even do that.

My advice would be to offer him lots of fluids the day before/of

treatment (LOTS-like push fluids. It helps make the veins large for

an easier stick, and also helps reduce headaches. In all good for

you). I would bring along a movie/cards/game to play. It will

likely take a couple hours. Let him rest when he gets home if he

feels sort of worn down.

The good news is, he should be feeling better soon!

Good luck!

, mom to Mark, 7 CVID

>

> Hi All; I am new to the group. My 16 y/o son just was diagnosed

with IgG

> def. and we are beginning IVIG on July 1st. Wow very soon. He has

been very

> ill over the past year-enlarged spleen, tons of GI symptoms - can't

keep on

> weight. This past year has well been a nightmare. The Doc says

after (2)

> infusions he will probably be a good candidate for subQ (sp?). We

are

> seeking information on experiences with IVIG. Have all the info

from IDF

> and many other people have provided helpful info. He has been too

ill to

> attend school this year and part of last -that's a whole other

story. We

> are just trying to deal with the day to day stuff at this point and

hanging

> on by a thread. Thanks for listening.

>

> Darla - Mom to JT -16 y/o

> Central Texas

>

>

> SAD-IgG Def.

>

>

>

[Guest guest]

Hi Darla,

Just wanted to say hello. My son is 20 and has taken

IVIG for many years now. We are also in Texas.

Jan

[Guest guest]

Hi Tisha Welcome!!! . Sorry to hear your hubby is ill. I have had this

since 1972 and there have been many good remissions. I kind of get a middle of

the road stuff now...certainly nothing like the early days. Rest and good

nutrition certainly always helped me. Have him sleep as much as he can. Let me

know how it goes. I live in NJ. My kids are 13 and 8. I also found that when I

ate a lot of meat I felt stiffer...so I do eat it, but maybe 2 times a

week..luckily I like fish, pasta, nuts, occasional dairy...

Hugs

Liz

**************Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Tisha,

 

I am sorry to hear about your husband. My daughter also has Stills and I am

always looking for anything natural to help. I haven't found anything yet but

will certainly report when I do. What seems to help more than anything is

rest. She is a full time student at University of Texas and I have noticed that

if she takes a nap sometime during the day she feels so much better.

 

I don't know where your husband is with the disease. If he is at the beginning

with high fevers, then probably rest is all that he is doing. has passed

that and is dealing with RA symptoms that are fairly significant.

 

I know you are concerned that it is probably a strain for you with two little

ones that already demand a tremendous amount of your time. Make sure you get

rest too and stay on this site as it can be quite encouraging and helpful.

 

Lea

Subject: Introduction

To: Stillsdisease

Date: Wednesday, September 10, 2008, 8:56 AM

Hi, I'm Tisha,

I have two kids, ages 2 and 4 months and my husband was diagnosed with Still's

disease the very beginning of the year.  He's on Methotrexate right now along

with a whole lot of other meds.  I would love to find more information about

natural ways of treating Still's disease.  I'm looking into a couple Naturpathic

physicians right now. 

[Guest guest]

Tisha,

 

I am sorry to hear about your husband. My daughter also has Stills and I am

always looking for anything natural to help. I haven't found anything yet but

will certainly report when I do. What seems to help more than anything is

rest. She is a full time student at University of Texas and I have noticed that

if she takes a nap sometime during the day she feels so much better.

 

I don't know where your husband is with the disease. If he is at the beginning

with high fevers, then probably rest is all that he is doing. has passed

that and is dealing with RA symptoms that are fairly significant.

 

I know you are concerned that it is probably a strain for you with two little

ones that already demand a tremendous amount of your time. Make sure you get

rest too and stay on this site as it can be quite encouraging and helpful.

 

Lea

Subject: Introduction

To: Stillsdisease

Date: Wednesday, September 10, 2008, 8:56 AM

Hi, I'm Tisha,

I have two kids, ages 2 and 4 months and my husband was diagnosed with Still's

disease the very beginning of the year.  He's on Methotrexate right now along

with a whole lot of other meds.  I would love to find more information about

natural ways of treating Still's disease.  I'm looking into a couple Naturpathic

physicians right now. 

[Guest guest]

Stillsdisease on Wednesday, September 10, 2008 at 11:09 AM -0600

wrote:

>I know you are concerned that it is probably a strain for you with two little

ones that already demand a tremendous amount of your time.

Hi Tisha,

I am fairly new to stills- diag. in late Feb of 08. I also have two little ones

and am dealing with flare currently. I have been on Kineret for several months

and when I went back to work my fevers, rash and stiffness came back. The thing

that works best for me is the Prednisone- as much as I

hate to go up it really clears up my symptoms. I also think the with us new

newbies it's finding the right combination of meds. I was doing great with

Kineret and 5 mlg of Pred. then out of no where I got a rash and tightening of

the throat. I hope your husband gets better soon.

Sedillo

Educational Diagnostician

Hays CISD Special Education Department

sedillol@...

phone ext. 6951

[Guest guest]

---Hi Jenn, and welcome to the group:) Im Valarie, mom to four kids,

three with CVID, all with severe asthma. We saw great improvement with

IVIG, we've been trialing off since June, and at least one kid is

definitely going back on soon, we see dr tomorrow.

I know its scary starting out. My kids have so many issues, and you

get used to the one you already know about.....and then a new one

crops up, and you have to get the hang of that one. There are lots of

parents on this group, maybe someone has a child with CF and will

chime in soon!

valarie

mom to 3 w/cvid

In , " tapestrymlp2 " <tapestrymlp@...> wrote:

>

> Hi,

> My name is Jenn and my daughter, Cassidy, was recently diagnosed with

> antibody deficiency. We are still waiting to see a specialist. I'll

> try to make that appointment tomorrow.

>

> My daughter has Cystic Fibrosis and was diagnosed with that at 10

> months. She's now 4. I know what to expect with CF, but the immune

> stuff has me scared and off-kilter. I can't figure out what having

> immune issues means for Cass's health in light of her CF. If it will

> make the CF worse. She's been really sick this year and it's been

> pretty tough. She takes so many medications already.

>

> Anyway, we are very new to all this and just feeling our way. If there

> are any other parents of CF kids with immune issues on here, I would

> LOVE to hear from them. Thank you very much,

>

> Jenn

> Mom to Cassidy, 4yrs w/CF & G-tube & Immune Deficient

>

[Guest guest]

Welcome Jenn.this is a great group! You will find lots of help here.

My son has IGA Def and Partial Antibody Def. We are so blessed that right

now he is doing very well.

Please ask questions when you are not sure.this group of friends will step

up and help. They are wonderful!

Amy (mom to Bradley 6)

_____

From: [mailto: ] On Behalf Of

tapestrymlp2

Sent: Tuesday, November 18, 2008 8:10 PM

Subject: Introduction

Hi,

My name is Jenn and my daughter, Cassidy, was recently diagnosed with

antibody deficiency. We are still waiting to see a specialist. I'll

try to make that appointment tomorrow.

My daughter has Cystic Fibrosis and was diagnosed with that at 10

months. She's now 4. I know what to expect with CF, but the immune

stuff has me scared and off-kilter. I can't figure out what having

immune issues means for Cass's health in light of her CF. If it will

make the CF worse. She's been really sick this year and it's been

pretty tough. She takes so many medications already.

Anyway, we are very new to all this and just feeling our way. If there

are any other parents of CF kids with immune issues on here, I would

LOVE to hear from them. Thank you very much,

Jenn

Mom to Cassidy, 4yrs w/CF & G-tube & Immune Deficient

[Guest guest]

Welcome, Jen.

It sounds like you've been through a lot with Cassidy. I know of one another

family whose children have a working diagnosis of CF with CVID and are on IVIG.

The IVIG and managing the infections aggressively actually masked some of the CF

symptoms....perhaps due to less lung infections? I'm not exactly sure.

I hope you get answers from the specialist.

mom to Dani, 7, CVID

________________________________

From: tapestrymlp2 <tapestrymlp@...>

Sent: Tuesday, November 18, 2008 7:09:32 PM

Subject: Introduction

Hi,

My name is Jenn and my daughter, Cassidy, was recently diagnosed with

antibody deficiency. We are still waiting to see a specialist. I'll

try to make that appointment tomorrow.

My daughter has Cystic Fibrosis and was diagnosed with that at 10

months. She's now 4. I know what to expect with CF, but the immune

stuff has me scared and off-kilter. I can't figure out what having

immune issues means for Cass's health in light of her CF. If it will

make the CF worse. She's been really sick this year and it's been

pretty tough. She takes so many medications already.

Anyway, we are very new to all this and just feeling our way. If there

are any other parents of CF kids with immune issues on here, I would

LOVE to hear from them. Thank you very much,

Jenn

Mom to Cassidy, 4yrs w/CF & G-tube & Immune Deficient

[Guest guest]

Hi Jenn!

My name is . I have a 4 yr old son with a variant form of CF

and an immune deficiency. Below is his website if you want to check

it out. Email me if you want to chat sometime!

God Bless!

Proud Mom of 4: with a possible immune problem now too

4yr old : PID~combine immune deficiency and etc...

6yr old : allergies, chronic sinusitis, one enlarge tonsil

8yr old Noah: asthma, ADD

9yr old Hannah: asthma, allergies, urinary reflux, T & A

www.caringbridge.org/visit/matthewmichael

>

> Hi,

> My name is Jenn and my daughter, Cassidy, was recently diagnosed

with

> antibody deficiency. We are still waiting to see a specialist. I'll

> try to make that appointment tomorrow.

>

> My daughter has Cystic Fibrosis and was diagnosed with that at 10

> months. She's now 4. I know what to expect with CF, but the immune

> stuff has me scared and off-kilter. I can't figure out what having

> immune issues means for Cass's health in light of her CF. If it will

> make the CF worse. She's been really sick this year and it's been

> pretty tough. She takes so many medications already.

>

> Anyway, we are very new to all this and just feeling our way. If

there

> are any other parents of CF kids with immune issues on here, I would

> LOVE to hear from them. Thank you very much,

>

> Jenn

> Mom to Cassidy, 4yrs w/CF & G-tube & Immune Deficient

>

[Guest guest]

>

> I am as newbie as you can get when it comes to perfumery....I'm not

sure this is the right place

> for me after seeing some of the e-mails and how advanced

> some of the information is but I would like to stay awhile

> and find out. 

>  

>

Hi ,

Welcome to the group! Don't be put off by the advanced information

available here. While some of the group members are professionals,

and others are as educated and experienced as the pros, lots of us are

just hobbyists and beginners. Everyone interested in natural

perfumery is welcome, no matter their skill level.

Check out the archives, too. You can search by topic and learn loads

for no cost other than some time. I'm not a spokesman for the group,

just a hobbyist who has felt as you do, that this group is out of my

league. Although the experienced NPers are at a level I may never

achieve, I can learn from them and enjoy my own experiences with

natural essences all the more for the encouragement and information I

have received here.

Take care!

~Becky

[Guest guest]

>

>

> Hi ,

>

> Welcome to the group! Don't be put off by the advanced information

> available here. While some of the group members are professionals,

> and others are as educated and experienced as the pros, lots of us

> are just hobbyists and beginners. Everyone interested in natural

> perfumery is welcome, no matter their skill level.

> Becky

Hi , I second Becky's message. This is a forum and the thing

that keeps it actively spinning and evolving is the input and

discourse from people with all levels of experience. If it were only

for experts there'd be a whole lot of us out in the cold. : ) This

is a fantastic place to be - to learn what you can at your own pace,

and to share in the discussions with your own opinions and

experiences. That's what makes this group. That's what gives it

richness and depth. And what makes it not only informative, but

really fun.

I think the Topics of the Day (TOTDs) have really added new dimensions

to the group, opening up all sorts of subjects to the public forum,

and advancing this group to a greater level of interaction.

Anyway, welcome to us. You're in good company. : D

Cheers!

Andrine

[Guest guest]

Hi , I'm sorry to hear Hannah has been having problems. My son

Mark was diagnosed really early on, too, at 3 months and started IVIG

right away. And you are quite right it is a frustrating, scary road!

I hope she is doing well!

Best wishes,

mom to Mark 7 CVID

>

> I just wanted to introduce myself. My name is , and my 18 month

> old daughter's name is Hannah. She has hyper ige syndrome/Job's

> syndrome. She was diagnosed at the age of 5 months old. So, far

> things have been somewhat frustrating, but not quite as bad as some

> people have had it. I know that things may get worse as she gets

> older, but so far, no IVIG treatments. I hope to be able to gain

> knowledge from all of you, but also be able to be an encourager to

some

> of you as well.

> Thank you,

> Roach

>