Intro

[Guest guest]

Welcome Connie!

Renne's intention is so end our struggle, to make this journey easy and fun!

Let's not forget to have some FUN! Listen to the podcasts however you

like... stay honest with yourself. I started listening to the podcasts in

the middle and then decided it made more sense to me to start with the

prologue and move forward in order.

Today, my intention is to thank my body for all it does for me!

Grateful for this outlet. Hope you all have an amazing Friday!

ALL

On Thu, Mar 4, 2010 at 6:03 PM, Connie <cfranpow@...> wrote:

>

>

> Thanks for the reply. I'm just thinking of starting from the beginning

> because I'm not sure I got everything I needed to go forward. I'm torn

> because I can't wait to go forward. There is so much to draw from each and

> every podcast. I agree about needing something to focus me everyday.

> Sometimes I listen a couple of times a day and go back to something I need

> to work on. Maybe I will just go back to work out my toward and away from

> motivation before continue. It would be nice to have a sister to bounce

> things off of. I have two sisters but we don't have a close enough

> relationship to share day to day stuff.

>

>

>

> > >

> > > Yesterday I finally signed up for this group after listening to the

> podcast for several weeks. My name is Connie but this email is set up in my

> middle name Francine. I am 58, am 5' 1 and weigh 179. I live in Southern

> Missouri with my husband of 39 years. I work full time at our local library

> cataloging books. So I sit all day but walk 3-5 days a week either on my

> treadmill or outdoors. This weight has been with me for 15-20 years. It just

> added up over the years so the formerly thin me wasn't thin anymore. For the

> last few years I have been off and on a national weight loss program. I

> rejoined it again last September and have managed to lose 17 lbs. Listening

> to is helping me to realize I have underlying beliefs that are

> sabotaging my loss. Weight loss for me has been very hard. Now I am trying

> to figure out why I am making it so hard and what being obese gives me. I

> have already worked through most of my secret eating, hording and much of my

> binging in the past few years but there is still obviously much I have to

> work on. The podcasts are helping with that but I'm having trouble with

> figuring out a strong toward and away from motivation and what underlying

> beliefs are holding me back.

> > > This group of support and supporting appeals to me as a way to work

> these questions out as I progress in the podcasts. Right now I'm on 21 but

> am thinking of starting at the beginning and putting in more time working on

> it. What do you think? Go from where I am or begin again?

> > >

> >

>

>

>

--

Avie Linden

University of Michigan - Anthropology

Program in the Environment, History of Art

248.535.0521

[Guest guest]

Welcome Connie!

Renne's intention is so end our struggle, to make this journey easy and fun!

Let's not forget to have some FUN! Listen to the podcasts however you

like... stay honest with yourself. I started listening to the podcasts in

the middle and then decided it made more sense to me to start with the

prologue and move forward in order.

Today, my intention is to thank my body for all it does for me!

Grateful for this outlet. Hope you all have an amazing Friday!

ALL

On Thu, Mar 4, 2010 at 6:03 PM, Connie <cfranpow@...> wrote:

>

>

> Thanks for the reply. I'm just thinking of starting from the beginning

> because I'm not sure I got everything I needed to go forward. I'm torn

> because I can't wait to go forward. There is so much to draw from each and

> every podcast. I agree about needing something to focus me everyday.

> Sometimes I listen a couple of times a day and go back to something I need

> to work on. Maybe I will just go back to work out my toward and away from

> motivation before continue. It would be nice to have a sister to bounce

> things off of. I have two sisters but we don't have a close enough

> relationship to share day to day stuff.

>

>

>

> > >

> > > Yesterday I finally signed up for this group after listening to the

> podcast for several weeks. My name is Connie but this email is set up in my

> middle name Francine. I am 58, am 5' 1 and weigh 179. I live in Southern

> Missouri with my husband of 39 years. I work full time at our local library

> cataloging books. So I sit all day but walk 3-5 days a week either on my

> treadmill or outdoors. This weight has been with me for 15-20 years. It just

> added up over the years so the formerly thin me wasn't thin anymore. For the

> last few years I have been off and on a national weight loss program. I

> rejoined it again last September and have managed to lose 17 lbs. Listening

> to is helping me to realize I have underlying beliefs that are

> sabotaging my loss. Weight loss for me has been very hard. Now I am trying

> to figure out why I am making it so hard and what being obese gives me. I

> have already worked through most of my secret eating, hording and much of my

> binging in the past few years but there is still obviously much I have to

> work on. The podcasts are helping with that but I'm having trouble with

> figuring out a strong toward and away from motivation and what underlying

> beliefs are holding me back.

> > > This group of support and supporting appeals to me as a way to work

> these questions out as I progress in the podcasts. Right now I'm on 21 but

> am thinking of starting at the beginning and putting in more time working on

> it. What do you think? Go from where I am or begin again?

> > >

> >

>

>

>

--

Avie Linden

University of Michigan - Anthropology

Program in the Environment, History of Art

248.535.0521

[Guest guest]

Hi Connie,

I listen with my iPod on shuffle. I pick the episode I want to start with, and

then let the iPod decide what I should listen to next. I really like

this--there's *always* something in the random episodes that really speaks to

where I am that day. When I was getting caught up, it gave me the feeling of

moving forward but still being able to get more out of earlier episodes. (I made

sure not to download more than 3 new episodes at a time, so I wouldn't

accidentally skip anything...)

I still do it now that I'm caught up. I'll pick something that I want (or need)

to hear again, and then see what comes next.

Today it served up something I would never have chosen on my own. I rarely have

trouble sleeping, so I tend to skip the series on sleep strategies when I'm

picking my first podcast. But there was a question I really need to hear now.

About who am I trying to prove things to, anyway? Fit very well with some

changes I'm making/contemplating.

I guess this doesn't necessarily apply if you don't have time to listen to

multiple episodes, but I have a long commute. :-)

________________________________

From: Connie <cfranpow@...>

Thanks for the reply. I'm just thinking of starting from the beginning because

I'm not sure I got everything I needed to go forward. I'm torn because I can't

wait to go forward. There is so much to draw from each and every podcast.

[Guest guest]

,

What a great idea. I have them on both my Ipod and Iphone but I hadn't thought

of shuffling them. I listen to my Ipod while I work which doesn't work very

well for these podcasts except as reinforcement for something I have already

listen too. I also listen while on my treadmill and at night before falling

asleep. My commute is 5 minutes.

Thanks for the great idea.

Connie

>

> Hi Connie,

> I listen with my iPod on shuffle. I pick the episode I want to start with, and

then let the iPod decide what I should listen to next. I really like

this--there's *always* something in the random episodes that really speaks to

where I am that day. When I was getting caught up, it gave me the feeling of

moving forward but still being able to get more out of earlier episodes. (I made

sure not to download more than 3 new episodes at a time, so I wouldn't

accidentally skip anything...)

>

> I still do it now that I'm caught up. I'll pick something that I want (or

need) to hear again, and then see what comes next.

>

> Today it served up something I would never have chosen on my own. I rarely

have trouble sleeping, so I tend to skip the series on sleep strategies when I'm

picking my first podcast. But there was a question I really need to hear now.

About who am I trying to prove things to, anyway? Fit very well with some

changes I'm making/contemplating.

>

> I guess this doesn't necessarily apply if you don't have time to listen to

multiple episodes, but I have a long commute. :-)

>

>

>

>

>

>

> ________________________________

> From: Connie <cfranpow@...>

>

>

>

> Thanks for the reply. I'm just thinking of starting from the beginning

because I'm not sure I got everything I needed to go forward. I'm torn because

I can't wait to go forward. There is so much to draw from each and every

podcast.

>

>

>

>

>

[Guest guest]

Kim, do you ferment your own kefir from kefir grains..I make cheese from the harvested brewed kefir

liquid..There's a video on you tube about how to make it..it's pretty easy to make..Otherwise try buying

the direct set cheese cultures,you just heat the milk to 86 F add the packet,stir in slowly with a slotted

spoon..up and down and around..Take the pot off the stove,put the lid on and let it sit for 12 hours or

overnight..Once curd has formed,slice the curd in the pot,cover and let it sit for 2-3 hours more..Then

prepare the cheesecloth..lay it in a strainer,pour the cheese in or ladle the curds in,tie corners of cheesecloth up,hang to drain..I do mine about 3-6 hours,after the cheese has drained,put the cheese

in a bowl and add seasonings..I'm on a garlic salt kick,so I add garlic salt and parsley..You can just add

salt if you like..I use seasalt..I package my cheese in 1-4 serving size baggies ,label then freeze it..

Hope this helps..I love making cheese..That's why I got my goats in the first place.. in Ramona,CA

Intro

[Guest guest]

Kim, do you ferment your own kefir from kefir grains..I make cheese from the harvested brewed kefir

liquid..There's a video on you tube about how to make it..it's pretty easy to make..Otherwise try buying

the direct set cheese cultures,you just heat the milk to 86 F add the packet,stir in slowly with a slotted

spoon..up and down and around..Take the pot off the stove,put the lid on and let it sit for 12 hours or

overnight..Once curd has formed,slice the curd in the pot,cover and let it sit for 2-3 hours more..Then

prepare the cheesecloth..lay it in a strainer,pour the cheese in or ladle the curds in,tie corners of cheesecloth up,hang to drain..I do mine about 3-6 hours,after the cheese has drained,put the cheese

in a bowl and add seasonings..I'm on a garlic salt kick,so I add garlic salt and parsley..You can just add

salt if you like..I use seasalt..I package my cheese in 1-4 serving size baggies ,label then freeze it..

Hope this helps..I love making cheese..That's why I got my goats in the first place.. in Ramona,CA

Intro

[Guest guest]

I apparently forgot to introduce myself to the group-I apologize, we are a little crazy right now! We live in SE Indiana and raise dairy goats as well as a few boer goats and emus. I have some " share " owners who receive raw milk from us and a lot of my milk goes into making cheese. I was raised on raw cow milk and much prefer the taste of raw milk to the store bought stuff. I miss the milk when we dry the does up for the winter! Bonnie RobbinsTub Creek FarmsGreensburg, IN

[Guest guest]

I apparently forgot to introduce myself to the group-I apologize, we are a little crazy right now! We live in SE Indiana and raise dairy goats as well as a few boer goats and emus. I have some " share " owners who receive raw milk from us and a lot of my milk goes into making cheese. I was raised on raw cow milk and much prefer the taste of raw milk to the store bought stuff. I miss the milk when we dry the does up for the winter! Bonnie RobbinsTub Creek FarmsGreensburg, IN

[Guest guest]

I apparently forgot to introduce myself to the group-I apologize, we are a little crazy right now! We live in SE Indiana and raise dairy goats as well as a few boer goats and emus. I have some " share " owners who receive raw milk from us and a lot of my milk goes into making cheese. I was raised on raw cow milk and much prefer the taste of raw milk to the store bought stuff. I miss the milk when we dry the does up for the winter! Bonnie RobbinsTub Creek FarmsGreensburg, IN

[Guest guest]

Hi Bonnie,I live in Bloomington so we are practically neighbors  Kim

[Guest guest]

Hi Bonnie,I live in Bloomington so we are practically neighbors  Kim

[Guest guest]

Hello, and welcome to the group. We are located in West Texas, have 5 kids and home school the youngest three....one is in college and the other is searching for himself (whatever that may mean). We started our family on raw a few years ago due to one had a severe lactose intolerance and our family is trying to be more self sufficient. My husband wanted a cow but frankly I was a bit intimidated by the size so we started with goats, I love my goats and their creamy white dream they produce. The teens were the only ones that turned their noses up. We switched the goat milk and the cow milk containers and for weeks the boys never noticed and their little sister informed them one day and they have never looked back.

Good luck to you all.

Michele

To: RawDairy From: stephanielow@...Date: Sat, 26 Jun 2010 16:07:46 -0700Subject: Intro

Hello,

My name is and I live in the Las Vegas Valley. My family and I have just started using raw milk....the kids are slowly getting used it. I am looking forward to getting to know everyone better and learning how to incorporate raw dairy products in our lifestyle. We are also using more organic products.

I have 7 kids and I homeschool the 4 youngest. My husband is self employed and I am blessed to be a SAHM. My kids range in age from 6 years to 20 years-4 boys, 3 girls.

I enjoy gardening, herbs, reading and scrapbooking (my hubby calls it paper collecting).

Thanks for letting me be a part of this group.

in NV

[Guest guest]

Hello, and welcome to the group. We are located in West Texas, have 5 kids and home school the youngest three....one is in college and the other is searching for himself (whatever that may mean). We started our family on raw a few years ago due to one had a severe lactose intolerance and our family is trying to be more self sufficient. My husband wanted a cow but frankly I was a bit intimidated by the size so we started with goats, I love my goats and their creamy white dream they produce. The teens were the only ones that turned their noses up. We switched the goat milk and the cow milk containers and for weeks the boys never noticed and their little sister informed them one day and they have never looked back.

Good luck to you all.

Michele

To: RawDairy From: stephanielow@...Date: Sat, 26 Jun 2010 16:07:46 -0700Subject: Intro

Hello,

My name is and I live in the Las Vegas Valley. My family and I have just started using raw milk....the kids are slowly getting used it. I am looking forward to getting to know everyone better and learning how to incorporate raw dairy products in our lifestyle. We are also using more organic products.

I have 7 kids and I homeschool the 4 youngest. My husband is self employed and I am blessed to be a SAHM. My kids range in age from 6 years to 20 years-4 boys, 3 girls.

I enjoy gardening, herbs, reading and scrapbooking (my hubby calls it paper collecting).

Thanks for letting me be a part of this group.

in NV

[Guest guest]

hi

I home educate my youngest. Welcome to the group and raw dairy!

Mandy

Isle of Arran

Scotland

[Guest guest]

hi

I home educate my youngest. Welcome to the group and raw dairy!

Mandy

Isle of Arran

Scotland

[Guest guest]

,

Nice website. I enjoyed looking thru and seeing what your

family is doing. Congratulations and blessings on your journey.

lin

www.feonow.com

www.trinityoaksfarms.com

__________ Information from ESET Smart Security, version of virus signature database 5316 (20100727) __________The message was checked by ESET Smart Security.http://www.eset.com

[Guest guest]

Does your son have any other health or medical issues? At age 1 is when my

daughter started having issues with her levels.

 

________________________________

From: " amandaconstantin@... " <amandaconstantin@...>

Sent: Wed, September 1, 2010 9:20:39 PM

Subject: Intro

 

Hi everyone! My name is and I have three kids. I have a six year old son,

a four year old daughter and a one year old son. My one year old has been sick

since he was three months old. He had RSV and the swine flu at 3 months. Right

after he recovered from that he got pneumonia. We are lucky if he goes more than

a week without being sick with something. He is on Prevacid, Singulair, Flovent,

Nasonex daily and Albuterol as needed. We have been seeing the immunologist

since he was 6 months old. His IgG levels are low but are considered in the

normal range. They have been checking his levels every three months and they are

slowly going up. My son got his one year immunizations and one month later had

his vaccine titers checked and they have all gone down from 5 months ago. They

checked his T and B cell levels this time and his T cells CD3 and helper CD4 are

low. I don't go back to the immunologist to go over the results for 3 more

weeks. I was wondering if anyone had any ideas of what any of this means? Also

has anyone else gone through this when there child was one? I am just really

looking for any sort of input on what I am in store for.

Thanks,

[Guest guest]

Does your son have any other health or medical issues? At age 1 is when my

daughter started having issues with her levels.

 

________________________________

From: " amandaconstantin@... " <amandaconstantin@...>

Sent: Wed, September 1, 2010 9:20:39 PM

Subject: Intro

 

Hi everyone! My name is and I have three kids. I have a six year old son,

a four year old daughter and a one year old son. My one year old has been sick

since he was three months old. He had RSV and the swine flu at 3 months. Right

after he recovered from that he got pneumonia. We are lucky if he goes more than

a week without being sick with something. He is on Prevacid, Singulair, Flovent,

Nasonex daily and Albuterol as needed. We have been seeing the immunologist

since he was 6 months old. His IgG levels are low but are considered in the

normal range. They have been checking his levels every three months and they are

slowly going up. My son got his one year immunizations and one month later had

his vaccine titers checked and they have all gone down from 5 months ago. They

checked his T and B cell levels this time and his T cells CD3 and helper CD4 are

low. I don't go back to the immunologist to go over the results for 3 more

weeks. I was wondering if anyone had any ideas of what any of this means? Also

has anyone else gone through this when there child was one? I am just really

looking for any sort of input on what I am in store for.

Thanks,

[Guest guest]

Actually , sounds like you are on the right track. My son , who is

now 8, was also sick since birth with multiple pneumonias, lung abcesses, RSV,

etc. For the first 2 years of his life we were in the hospital with infections

for over 3 months in total... it is hard. But some of the testing they need to

do to determine if your one year old has an immune deficiency have to wait until

he is 2 so that your maternal antibodies in his system have completely worn off.

When he is 2 they will probably test him with pneumovax or prevnar to determine

his body's reaction and how it maintains immunity. This is a big tell in the

immune deficiency scale. And only through a history of immunizations and titer

checking will they see the pattern of how his B and T cells are respoinding.

Initially they thought only had a B cell issue, and 2 years later found

that it was a combined B and T cell problem.

And even though we have a diagnosis now, and have had for about 2 years, the way

is treated hasn't really changed. We still have to deal with each

infection as it comes and try to keep him healthy. is now on IVIG every

4 weeks and has been for 2 years now. But each kid is different, even when they

have the same diagnosis.

What are you in for ? - years of worrying, illnesses that come on very quickly

and ruin family plans, friends and family that think you are neurotic and

worrying too much, and growing an indepth knowledge of viruses and antibiotics.

But it gets better. This is a great group and a great resource. Hang in there

and trust your instincts with your son.

Kim, mom to , 8, with Hyper IgE (Job Syndrome)

From: amandaconstantin@...

Date: Wed, 1 Sep 2010 20:20:39 -0500

Subject: Intro

Hi everyone! My name is and I have three kids. I have a six year old son,

a four year old daughter and a one year old son. My one year old has been sick

since he was three months old. He had RSV and the swine flu at 3 months. Right

after he recovered from that he got pneumonia. We are lucky if he goes more than

a week without being sick with something. He is on Prevacid, Singulair, Flovent,

Nasonex daily and Albuterol as needed. We have been seeing the immunologist

since he was 6 months old. His IgG levels are low but are considered in the

normal range. They have been checking his levels every three months and they are

slowly going up. My son got his one year immunizations and one month later had

his vaccine titers checked and they have all gone down from 5 months ago. They

checked his T and B cell levels this time and his T cells CD3 and helper CD4 are

low. I don't go back to the immunologist to go over the results for 3 more

weeks. I was wondering if anyone had any ideas of what any of this means? Also

has anyone else gone through this when there child was one? I am just really

looking for any sort of input on what I am in store for.

Thanks,

[Guest guest]

Good Morning Kim,

I am mom to a 10 yo dx'd w/ combined immune deficiency when she was 4. We

recently moved and re-establishing care has been nothing short of a nightmare

that is ongoing. One thing that continues to show up on her labs is an IgE that

is 4-5 times the high end of normal. In terms of allergies? She was tested

with 68 allergens and came back postive to all but 2. She also has

hyperdermagraph-what-ya- ma-call-it, where we can write all over her with the

light touch of our nails. This is MUCH worse when she is not well (which is

most of the time). She is currently off all meds, including her Immunoglobin

and is taking nothing. I understand that severe allergies can be a secondary

autoimmune complication of PIDD. We have been told they cannot really treat her

allergies because there are too many. My understanding of Job's is that it is

extremely elevated IgE...into the tens thousands levels. Molly's levels are 980

on the last test. There is no question that her Allergies/IgE issues are

contributing to her constant respiratory issues, including pan sinusitis and

recurrent pneumonias. She is also now colonized with pseudomonas. I wanted to

ask your take on the IgE issues.

Terri

Mom, Molly (10) and Maggie (8) CID

>

>

> Actually , sounds like you are on the right track. My son , who

is now 8, was also sick since birth with multiple pneumonias, lung abcesses,

RSV, etc. For the first 2 years of his life we were in the hospital with

infections for over 3 months in total... it is hard. But some of the testing

they need to do to determine if your one year old has an immune deficiency have

to wait until he is 2 so that your maternal antibodies in his system have

completely worn off.

>

>

>

> When he is 2 they will probably test him with pneumovax or prevnar to

determine his body's reaction and how it maintains immunity. This is a big tell

in the immune deficiency scale. And only through a history of immunizations and

titer checking will they see the pattern of how his B and T cells are

respoinding. Initially they thought only had a B cell issue, and 2

years later found that it was a combined B and T cell problem.

>

>

>

> And even though we have a diagnosis now, and have had for about 2 years, the

way is treated hasn't really changed. We still have to deal with each

infection as it comes and try to keep him healthy. is now on IVIG every

4 weeks and has been for 2 years now. But each kid is different, even when they

have the same diagnosis.

>

>

>

> What are you in for ? - years of worrying, illnesses that come on very quickly

and ruin family plans, friends and family that think you are neurotic and

worrying too much, and growing an indepth knowledge of viruses and antibiotics.

But it gets better. This is a great group and a great resource. Hang in there

and trust your instincts with your son.

>

>

>

> Kim, mom to , 8, with Hyper IgE (Job Syndrome)

>

>

>

>

> From: amandaconstantin@...

> Date: Wed, 1 Sep 2010 20:20:39 -0500

> Subject: Intro

>

>

>

>

>

>

> Hi everyone! My name is and I have three kids. I have a six year old

son, a four year old daughter and a one year old son. My one year old has been

sick since he was three months old. He had RSV and the swine flu at 3 months.

Right after he recovered from that he got pneumonia. We are lucky if he goes

more than a week without being sick with something. He is on Prevacid,

Singulair, Flovent, Nasonex daily and Albuterol as needed. We have been seeing

the immunologist since he was 6 months old. His IgG levels are low but are

considered in the normal range. They have been checking his levels every three

months and they are slowly going up. My son got his one year immunizations and

one month later had his vaccine titers checked and they have all gone down from

5 months ago. They checked his T and B cell levels this time and his T cells CD3

and helper CD4 are low. I don't go back to the immunologist to go over the

results for 3 more weeks. I was wondering if anyone had any ideas of what any of

this means? Also has anyone else gone through this when there child was one? I

am just really looking for any sort of input on what I am in store for.

> Thanks,

>

>

>

[Guest guest]

Lots of info here. I have one question? Why are they only treating with IVIG

every 4 weeks. The half life ( time it survives and works in the system) of

Gammaglobulin is 21 days which means that last week he is unprotected. Also for

many sub q weekly works much better by keeping the levels more stable. Just some

thoughts from what you wrote. BARBIE

________________________________

From: " cerdaclan@... " <tcerda@...>

Sent: Fri, September 3, 2010 5:31:32 AM

Subject: Re: Intro

Good Morning Kim,

I am mom to a 10 yo dx'd w/ combined immune deficiency when she was 4. We

recently moved and re-establishing care has been nothing short of a nightmare

that is ongoing. One thing that continues to show up on her labs is an IgE that

is 4-5 times the high end of normal. In terms of allergies? She was tested

with 68 allergens and came back postive to all but 2. She also has

hyperdermagraph-what-ya- ma-call-it, where we can write all over her with the

light touch of our nails. This is MUCH worse when she is not well (which is

most of the time). She is currently off all meds, including her Immunoglobin

and is taking nothing. I understand that severe allergies can be a secondary

autoimmune complication of PIDD. We have been told they cannot really treat her

allergies because there are too many. My understanding of Job's is that it is

extremely elevated IgE...into the tens thousands levels. Molly's levels are 980

on the last test. There is no question that her Allergies/IgE issues are

contributing to her constant respiratory issues, including pan sinusitis and

recurrent pneumonias. She is also now colonized with pseudomonas. I wanted to

ask your take on the IgE issues.

Terri

Mom, Molly (10) and Maggie (8) CID

>

>

> Actually , sounds like you are on the right track. My son , who

>is now 8, was also sick since birth with multiple pneumonias, lung abcesses,

>RSV, etc. For the first 2 years of his life we were in the hospital with

>infections for over 3 months in total... it is hard. But some of the testing

>they need to do to determine if your one year old has an immune deficiency have

>to wait until he is 2 so that your maternal antibodies in his system have

>completely worn off.

>

>

>

>

> When he is 2 they will probably test him with pneumovax or prevnar to

determine

>his body's reaction and how it maintains immunity. This is a big tell in the

>immune deficiency scale. And only through a history of immunizations and titer

>checking will they see the pattern of how his B and T cells are respoinding.

>Initially they thought only had a B cell issue, and 2 years later found

>that it was a combined B and T cell problem.

>

>

>

>

> And even though we have a diagnosis now, and have had for about 2 years, the

>way is treated hasn't really changed. We still have to deal with each

>infection as it comes and try to keep him healthy. is now on IVIG

every

>4 weeks and has been for 2 years now. But each kid is different, even when

they

>have the same diagnosis.

>

>

>

> What are you in for ? - years of worrying, illnesses that come on very quickly

>and ruin family plans, friends and family that think you are neurotic and

>worrying too much, and growing an indepth knowledge of viruses and antibiotics.

>But it gets better. This is a great group and a great resource. Hang in there

>and trust your instincts with your son.

>

>

>

> Kim, mom to , 8, with Hyper IgE (Job Syndrome)

>

>

>

>

> From: amandaconstantin@...

> Date: Wed, 1 Sep 2010 20:20:39 -0500

> Subject: Intro

>

>

>

>

>

>

> Hi everyone! My name is and I have three kids. I have a six year old

>son, a four year old daughter and a one year old son. My one year old has been

>sick since he was three months old. He had RSV and the swine flu at 3 months.

>Right after he recovered from that he got pneumonia. We are lucky if he goes

>more than a week without being sick with something. He is on Prevacid,

>Singulair, Flovent, Nasonex daily and Albuterol as needed. We have been seeing

>the immunologist since he was 6 months old. His IgG levels are low but are

>considered in the normal range. They have been checking his levels every three

>months and they are slowly going up. My son got his one year immunizations and

>one month later had his vaccine titers checked and they have all gone down from

>5 months ago. They checked his T and B cell levels this time and his T cells

CD3

>and helper CD4 are low. I don't go back to the immunologist to go over the

>results for 3 more weeks. I was wondering if anyone had any ideas of what any

of

>this means? Also has anyone else gone through this when there child was one? I

>am just really looking for any sort of input on what I am in store for.

>

> Thanks,

>

>

>

[Guest guest]

Hi ,

I feel for you - I know exactly what you are going through. We NEVER went - or

even go to now - Mcs playlands or places like that - they are cesspools of

germs. If we were out and I saw a child with a green snotty nose, we went home

! We didn't go out alot either, but mostly because was always sick.

His 6th birthday (Jan) was the first one were weren't in the hospital for IV

antibiotics for pneumonia. Most of his pneumonias started as upper respiratory

infections that never resolved even after 1 -2 months of antibiotics then

ballooned into pneumonias. Only IV antibiotics would help him kick the

infection, which meant 7 - 10 days in the hospital at least 3 - 4 times a year.

I think you will be LUCKY to get a diagnosis by the time he is 2... most immune

deficiencies take a long time to diagnose. We only found out 's

diagnosis because the gene for HIES was identified. Three months later we knew

what he had - I always thought that we needed a confirmed diagnosis.... but it

is amazing how little that helped. It just helped me confirm that I wasn't

neurotic or overprotective.

Our " healthy " rules are never sharing food or drinks, even in our own family,

washing hands all the time (Purell is always around), and trusting my instincts.

Part of 's immune deficiency means that he doesn't get a raging fever. I

have to intuitively know when something is more than just a cold or the flu...

and by the way, with these kids NOTHING is " just a cold " . Whatever the other 2

get and get over in 3 -4 days means has to be on antibiotics and quite

possibly hospitalized for IV.

Trust your instincts - fight for your son's health... this is just the

beginning for you on a long road. Everything you are doing is right - getting

educated, researching, keeping your son away from sick people and germy

environments... so far, GOOD FOR YOU !

Kim, mom to , 8, with Hyper IgE (Job Syndrome)

From: amandaconstantin@...

Date: Fri, 3 Sep 2010 11:37:08 -0500

Subject: Intro

Kim,

Thank you for your response to my post. My other two children are healthy so

this is all very new to us. None of my family and friends understand why I get

so worried about their children with runny noses being around my won. What they

don't see is my son doing breathing treatments every 4 hours because their

child's runny nose went straight to my sons chest and he is now wheezing. I have

tried to explain this to everyone, but without an official diagnosis they just

think I am overreacting. My son is very attached to me because we stay home a

lot so he is not exposed to more than what my older kids bring home. When your

child was this age did yall go out to public places? I am scared to even bring

him to the grocery store. How do you get past that or what steps do you take to

keep your child as healthy as possible? Do you think my son will probably be 2

before we get an official diagnosis? Thanks again for the info and answering my

questions!

[Guest guest]

, I know exactly how you feel......I hate when folks judge us and call us

" overprotective " when we have sick kids we're trying to keep out of the

hospital!

When my son was in Pre-K, he was sick all the time...if a kid in the class had a

cold, or strep throat, within 2 days, my son would be in the ER with 104 fever

and pneumonia, or the strep would advance to scarlet fever.

I would tell people.... " If the worst I'll ever be called is an overprotective

mom, then so be it! "  

Soon after that my son was diagnosed with a C3 complement deficiency, low IgG

and later he was found to have a bone marrow failure syndrome, and chronic

neutropenia, low natural killer cells and IgG 3 subclass deficiency. His bone

marrow cellularity is only 20%.

Now he receives IVIG every 2 weeks and GCSF, granulocyte colony stimulating

factor (Neupogen) shots three times a week. Now he can go places without

catching everything, finally he has good immunity...even though it's passive or

forced from the Neupogen....but he's not a bug magnet any longer with these on

board.

When he was your son's age, every outing was a risk, it is scary I know....Hugs

to you....

You are being a good mom to protect your child.....let them say what they will,

but I know it hurts.....tell them to walk a mile in your shoes before

commenting.  Your first responsibility is to your child....if they don't

understand that, they are not true friends.

When my son was finally diagnosed, I copied the doctors' reports and labs and if

anyone acted like that to us, I said you have no idea....MYOB!

hugs, you are a good Mom, that's what matters.............Sue

From: amandaconstantin@... <amandaconstantin@...>

Subject: Intro

Date: Friday, September 3, 2010, 4:37 PM

 

Kim,

Thank you for your response to my post. My other two children are healthy so

this is all very new to us. None of my family and friends understand why I get

so worried about their children with runny noses being around my won. What they

don't see is my son doing breathing treatments every 4 hours because their

child's runny nose went straight to my sons chest and he is now wheezing. I have

tried to explain this to everyone, but without an official diagnosis they just

think I am overreacting. My son is very attached to me because we stay home a

lot so he is not exposed to more than what my older kids bring home. When your

child was this age did yall go out to public places? I am scared to even bring

him to the grocery store. How do you get past that or what steps do you take to

keep your child as healthy as possible? Do you think my son will probably be 2

before we get an official diagnosis? Thanks again for the info and answering my

questions!

[Guest guest]

, I know exactly how you feel......I hate when folks judge us and call us

" overprotective " when we have sick kids we're trying to keep out of the

hospital!

When my son was in Pre-K, he was sick all the time...if a kid in the class had a

cold, or strep throat, within 2 days, my son would be in the ER with 104 fever

and pneumonia, or the strep would advance to scarlet fever.

I would tell people.... " If the worst I'll ever be called is an overprotective

mom, then so be it! "  

Soon after that my son was diagnosed with a C3 complement deficiency, low IgG

and later he was found to have a bone marrow failure syndrome, and chronic

neutropenia, low natural killer cells and IgG 3 subclass deficiency. His bone

marrow cellularity is only 20%.

Now he receives IVIG every 2 weeks and GCSF, granulocyte colony stimulating

factor (Neupogen) shots three times a week. Now he can go places without

catching everything, finally he has good immunity...even though it's passive or

forced from the Neupogen....but he's not a bug magnet any longer with these on

board.

When he was your son's age, every outing was a risk, it is scary I know....Hugs

to you....

You are being a good mom to protect your child.....let them say what they will,

but I know it hurts.....tell them to walk a mile in your shoes before

commenting.  Your first responsibility is to your child....if they don't

understand that, they are not true friends.

When my son was finally diagnosed, I copied the doctors' reports and labs and if

anyone acted like that to us, I said you have no idea....MYOB!

hugs, you are a good Mom, that's what matters.............Sue

From: amandaconstantin@... <amandaconstantin@...>

Subject: Intro

Date: Friday, September 3, 2010, 4:37 PM

 

Kim,

Thank you for your response to my post. My other two children are healthy so

this is all very new to us. None of my family and friends understand why I get

so worried about their children with runny noses being around my won. What they

don't see is my son doing breathing treatments every 4 hours because their

child's runny nose went straight to my sons chest and he is now wheezing. I have

tried to explain this to everyone, but without an official diagnosis they just

think I am overreacting. My son is very attached to me because we stay home a

lot so he is not exposed to more than what my older kids bring home. When your

child was this age did yall go out to public places? I am scared to even bring

him to the grocery store. How do you get past that or what steps do you take to

keep your child as healthy as possible? Do you think my son will probably be 2

before we get an official diagnosis? Thanks again for the info and answering my

questions!

[Guest guest]

Hello all - I'm a Catholic US Navy Flight Doc practicing in Virginia now. I'm somewhat new to the NFP practice in the past couple years, and want to expand my knowledge in the area. Thanks in advance for all the info!