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The silly answer is ..........................Yes.

If you've followed a few recent posts you may have seen people being re-assured

that It matters not one tittle or jot what the " Mother " does, " Baby " floats. And

not to disturb your brew while the SCOBY is forming.

Since GT's has, presumable, been hurtled around at least part of the U.S. I

think it's fair to assume it has every right to sink if it feels so inclined.

;¬))

.

(UK)

________________________________

From: Philip Mecham <deaf258@...>

kombucha tea

Sent: Wednesday, 9 September, 2009 20:30:22

Subject: Re: Question

Just curious, are the scobys on top or bottom? Because sometimes when

I buy GTs Kombucha, it had thin scobys floating in the bottom of the

bottles. I often wonder if I bought 2 bottles, poured them in a jar

and let it ferment a week or so, would I get a healthy scoby on top?

Philip

--

" When I lived as a hearing person, it limited me. When I lived as a

Deaf person, it set me free. "

~ philip b. mecham

On Wed, Sep 9, 2009 at 8:16 AM, nsmoschgat<nsmoschgat@...> wrote:

>

>

> I brewed my first batch. I strained it and put it in 16 ounce ball jars with

> plastic lids. I thought I would want a little extra fiz, so I put them in a

> cupboard for 2 days. Today I took them out and put them in a small apartment

> size refrigerator that I use for special items. They all have scobys on the

> tops! I strained one and my dh and I drank it with ice, by the way it is

> awesome. Kind of spicy bubbly, refreshing and sooooo yummy. Kind of reminded

> me of a mohito and I may crush a sprig of mint or spearmint in my next

> glass. My question is - should it be growing more scobys? What should I do

> with them? Thanks, Naomi

>

>

------------------------------------

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Yes dear,

New scobys are quite normal . In fact you couldn't stop them if you

tried. What should you do with them? Same as you would any other.

Congratulations You a Momma. LOL

zoe

nsmoschgat wrote:

> I brewed my first batch. I strained it and put it in 16 ounce ball jars with

plastic lids. I thought I would want a little extra fiz, so I put them in a

cupboard for 2 days. Today I took them out and put them in a small apartment

size refrigerator that I use for special items. They all have scobys on the

tops! I strained one and my dh and I drank it with ice, by the way it is

awesome. Kind of spicy bubbly, refreshing and sooooo yummy. Kind of reminded

me of a mohito and I may crush a sprig of mint or spearmint in my next glass. My

question is - should it be growing more scobys? What should I do with them?

Thanks, Naomi

>

>

>

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

>

>

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OMG ,

I do so look forward to your posts. The visualizations are great.

zoe

Kane wrote:

> The silly answer is ..........................Yes.

>

> If you've followed a few recent posts you may have seen people being

re-assured that It matters not one tittle or jot what the " Mother " does, " Baby "

floats. And not to disturb your brew while the SCOBY is forming.

>

> Since GT's has, presumable, been hurtled around at least part of the U.S. I

think it's fair to assume it has every right to sink if it feels so inclined.

>

> ;¬))

>

> .

> (UK)

>

>

>

>

>

> ________________________________

> From: Philip Mecham <deaf258@...>

> kombucha tea

> Sent: Wednesday, 9 September, 2009 20:30:22

> Subject: Re: Question

>

> Just curious, are the scobys on top or bottom? Because sometimes when

> I buy GTs Kombucha, it had thin scobys floating in the bottom of the

> bottles. I often wonder if I bought 2 bottles, poured them in a jar

> and let it ferment a week or so, would I get a healthy scoby on top?

>

> Philip

>

>

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Hi,

Maddie has had several surgeries and she also does not feel pain and not very good at communicating (she is getting better). What the doctor did for her was to treat her as if she was in pain - he gave her pain medicine through IV before they woke her up and then when she could eat/drink we did meds orrally - I gave it every 5 1/2 hrs for the one ( set the alarm at night so it was consistent) and then gradually weaned her to Tylenol over the next several days. She did very well through all of her surgeries. In fact, her foot doctor wants to operate on her feet and was worried how she would do, but I don't think she will give us any problems:) I also make sure we cater to her over the next week or so which she adjusts to vey well - haha!

I hope everything goes well!

Rhonda

From: jennibabe31 <jennibabe31@...>Subject: questionautism Date: Wednesday, September 23, 2009, 10:51 AM

My son Jon has misaligned eyes that he is having surgery on in October. I told him, but he has no understanding. I don't want to make him anxious and explain too much either. He doesn't usually feel pain and even though he is verbal, he is lacking in the language area big time. His counselor just pointed out to me that this could be a problem with the surgery. He might not be able to feel the pain to alert us of a problem and if he does feel the pain he may not be able to communicate that with us if he even understands what he is feeling since it would be something new to him. Have any of you had to put a child like this through surgery? How did you prepare for it? How did your child do after the surgery? Any advice appreciated. Thank you in advance. Jon is 8 yrs old and autistic with severe sensory issues. Jenni

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Hi,

Maddie has had several surgeries and she also does not feel pain and not very good at communicating (she is getting better). What the doctor did for her was to treat her as if she was in pain - he gave her pain medicine through IV before they woke her up and then when she could eat/drink we did meds orrally - I gave it every 5 1/2 hrs for the one ( set the alarm at night so it was consistent) and then gradually weaned her to Tylenol over the next several days. She did very well through all of her surgeries. In fact, her foot doctor wants to operate on her feet and was worried how she would do, but I don't think she will give us any problems:) I also make sure we cater to her over the next week or so which she adjusts to vey well - haha!

I hope everything goes well!

Rhonda

From: jennibabe31 <jennibabe31@...>Subject: questionautism Date: Wednesday, September 23, 2009, 10:51 AM

My son Jon has misaligned eyes that he is having surgery on in October. I told him, but he has no understanding. I don't want to make him anxious and explain too much either. He doesn't usually feel pain and even though he is verbal, he is lacking in the language area big time. His counselor just pointed out to me that this could be a problem with the surgery. He might not be able to feel the pain to alert us of a problem and if he does feel the pain he may not be able to communicate that with us if he even understands what he is feeling since it would be something new to him. Have any of you had to put a child like this through surgery? How did you prepare for it? How did your child do after the surgery? Any advice appreciated. Thank you in advance. Jon is 8 yrs old and autistic with severe sensory issues. Jenni

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Dr bravo's paper in our files suggests spiro contra progression but no really good studies over the long term. One would likely need 100 Pts 1/2 randomized to spiro and 1/2 to placebo. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Oct 10, 2009, at 9:37 PM, Chantal <chantalrobichaud29@...> wrote:

Has anyone else read a study pertaining to using aldo to their "advantage" in post-stroke patients. I'll have to find it again. I hope I bookmarked it, if so I'll link it.... Anyhow, the topic caught my eye because they were discussing using aldo to help? I'm going to search it as soon as I'm done writing out my question?

Anyhow, in this study they saw that by blocking aldosterone they saw a normal return to the vasculature in male patients that was quite significant but in females, the benefits were in post-menopause only?

Ring any bells?

So, MCB are competitive antagonists for the receptor and in turn, aldosterone levels rise.

What I'm wondering is if a pre-menopausal female is diagnosed with an adenoma/unilateral hyperplasia (potention surgical candidate) and she chooses to go on a MCB, are there studies indicating that the MCB will control disease progession?

Thanks

Chantal

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I re-read the article

-http://www.sciencedaily.com/releases/2005/12/051202133207.htm -(had to find it

again) and the study looks like it was only at the " animal " stage but it did

refer to another study where females had higher risk with increased aldo.

Possibly would females therefore need slightly higher doses/kg to compensate for

this? Although, I guess it depends on symptoms/stage of disease as well.

Anyhow, this article wasn't terribly recent, I looked further to see if there

had been any newer studies but to no avail. I'll save that for another day.

Again, mostly curious to see if there is significant diff. male/female, pre vs.

postmenopausal, factor in if hormonal involvement?

Gotta go...

Thanksgiving week-end for us up North :) Need to be partially functional this

week-end :)

TTFN

Cha

>

> Has anyone else read a study pertaining to using aldo to their " advantage " in

post-stroke patients. I'll have to find it again. I hope I bookmarked it, if

so I'll link it.... Anyhow, the topic caught my eye because they were

discussing using aldo to help? I'm going to search it as soon as I'm done

writing out my question?

>

> Anyhow, in this study they saw that by blocking aldosterone they saw a normal

return to the vasculature in male patients that was quite significant but in

females, the benefits were in post-menopause only?

>

> Ring any bells?

>

> So, MCB are competitive antagonists for the receptor and in turn, aldosterone

levels rise.

>

> What I'm wondering is if a pre-menopausal female is diagnosed with an

adenoma/unilateral hyperplasia (potention surgical candidate) and she chooses to

go on a MCB, are there studies indicating that the MCB will control disease

progession?

>

> Thanks

> Chantal

>

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That is one thing our database can teach us and others if we ever get it going.

Clarence E. Grim, BS, MS, MD

Specializing in Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in population's today.

On Saturday, October 10, 2009, at 09:59PM, "Chantal" <chantalrobichaud29@...> wrote:

>

I re-read the article -http://www.sciencedaily.com/releases/2005/12/051202133207.htm -(had to find it again) and the study looks like it was only at the "animal" stage but it did refer to another study where females had higher risk with increased aldo. Possibly would females therefore need slightly higher doses/kg to compensate for this? Although, I guess it depends on symptoms/stage of disease as well.

Anyhow, this article wasn't terribly recent, I looked further to see if there had been any newer studies but to no avail. I'll save that for another day.

Again, mostly curious to see if there is significant diff. male/female, pre vs. postmenopausal, factor in if hormonal involvement?

Gotta go...

Thanksgiving week-end for us up North :) Need to be partially functional this week-end :)

TTFN

Cha

>

> Has anyone else read a study pertaining to using aldo to their "advantage" in post-stroke patients. I'll have to find it again. I hope I bookmarked it, if so I'll link it.... Anyhow, the topic caught my eye because they were discussing using aldo to help? I'm going to search it as soon as I'm done writing out my question?

>

> Anyhow, in this study they saw that by blocking aldosterone they saw a normal return to the vasculature in male patients that was quite significant but in females, the benefits were in post-menopause only?

>

> Ring any bells?

>

> So, MCB are competitive antagonists for the receptor and in turn, aldosterone levels rise.

>

> What I'm wondering is if a pre-menopausal female is diagnosed with an adenoma/unilateral hyperplasia (potention surgical candidate) and she chooses to go on a MCB, are there studies indicating that the MCB will control disease progession?

>

> Thanks

> Chantal

>

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This site does have a database on it some have used it. I have looked at it but

not sure how one sets it up to show what they need to. I can see that for it to

work it would take some planing as to how to set it up.

> >

>

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The DB is a limited table type thing.

try editing "test"

Good luck

Re: question

This site does have a database on it some have used it. I have looked at it but not sure how one sets it up to show what they need to. I can see that for it to work it would take some planing as to how to set it up. > >>__________ NOD32 4389 (20090902) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

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Well... What you have is excellent basis to start a new brew!

Just add part or all of the SCOBY to cooled sweet tea and add 10%

volume of the vinegary KT for starter.

This is actually quite wonderful for you! You have everything right

on hand to get going again!

Happy autumnal brewing!

Gayle

On Nov 19, 2009, at 1:14 AM, charlene pray wrote:

> I had been setting tea threw the summer and recently let it sit to

> long

>

> So now I have kombucha vinegar

>

> my question is in order to get back to a nice healthy beverage

>

> what would you recommend ?

>

> all suggestions so appreciated

>

> need a SCOBY? I have some

>

>

>

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Yes, My son had a horrible time in any kind of day care. We had to keep him in a

one family daycare where there were limited kids. We were told 1-3 maximum.

There are SO many opportunities for kids to share germs at this age. It gets

better when they are a little older and do not put things in their mouths etc.

But.... my son really could not be in groups much until he was on gamma globulin

infusions. Life has gotten pretty normal now. He does very will as long as we

keep up with his infusions sub Q he has less colds than most kids. He is now

almost 14. I know it is hard but it will cut way down on the infections and give

his little body a rest.

BARBIE

________________________________

From: Kristy <k_princess15@...>

Sent: Mon, November 30, 2009 4:37:04 PM

Subject: Question

I am new to this & just learning about PID. The doctor things he may have PID

and running more tests on him. She recomminded that I take him out of daycare

and put him with just one or two kids max. Right now he is in an in-home daycare

with just 12 kids. I am trying to find someone to watch him but have not been

able to yet. Did anyone else have to take their kids out of daycare or anything

to keep them healthy? What about public school? How do you keep them healthy is

school?

Thanks

Kristy

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Yes, My son had a horrible time in any kind of day care. We had to keep him in a

one family daycare where there were limited kids. We were told 1-3 maximum.

There are SO many opportunities for kids to share germs at this age. It gets

better when they are a little older and do not put things in their mouths etc.

But.... my son really could not be in groups much until he was on gamma globulin

infusions. Life has gotten pretty normal now. He does very will as long as we

keep up with his infusions sub Q he has less colds than most kids. He is now

almost 14. I know it is hard but it will cut way down on the infections and give

his little body a rest.

BARBIE

________________________________

From: Kristy <k_princess15@...>

Sent: Mon, November 30, 2009 4:37:04 PM

Subject: Question

I am new to this & just learning about PID. The doctor things he may have PID

and running more tests on him. She recomminded that I take him out of daycare

and put him with just one or two kids max. Right now he is in an in-home daycare

with just 12 kids. I am trying to find someone to watch him but have not been

able to yet. Did anyone else have to take their kids out of daycare or anything

to keep them healthy? What about public school? How do you keep them healthy is

school?

Thanks

Kristy

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Yes I had to pull mine out of school too..

  

BYrd

http://www.caringbridge.org/visit/deanabyrd

_____________________________________________________________________________

_____________________

-- Question

I am new to this & just learning about PID. The doctor things he may have

PID and running more tests on him. She recomminded that I take him out of

daycare and put him with just one or two kids max. Right now he is in an

in-home daycare with just 12 kids. I am trying to find someone to watch him

but have not been able to yet. Did anyone else have to take their kids out

of daycare or anything to keep them healthy? What about public school? How

do you keep them healthy is school?

Thanks

Kristy

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: http://groups.

com/group//messages

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Yes I had to pull mine out of school too..

  

BYrd

http://www.caringbridge.org/visit/deanabyrd

_____________________________________________________________________________

_____________________

-- Question

I am new to this & just learning about PID. The doctor things he may have

PID and running more tests on him. She recomminded that I take him out of

daycare and put him with just one or two kids max. Right now he is in an

in-home daycare with just 12 kids. I am trying to find someone to watch him

but have not been able to yet. Did anyone else have to take their kids out

of daycare or anything to keep them healthy? What about public school? How

do you keep them healthy is school?

Thanks

Kristy

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: http://groups.

com/group//messages

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12 kids? yikes! Daycare was a nightmare and we couldn't do brick and mortar

public school either. We ended up using a virtual public school, most of

these kids just can't handle being around all the other little germ mongers

becasue there parents could care less if there kid is sick, they send them

in anyway which makes your kid sick.

Question

>I am new to this & just learning about PID. The doctor things he may have

>PID and running more tests on him. She recomminded that I take him out of

>daycare and put him with just one or two kids max. Right now he is in an

>in-home daycare with just 12 kids. I am trying to find someone to watch him

>but have not been able to yet. Did anyone else have to take their kids out

>of daycare or anything to keep them healthy? What about public school? How

>do you keep them healthy is school?

>

> Thanks

> Kristy

>

>

>

>

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

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

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Yes, I had problems with Ashton in daycare. That is when she really got

sick constantly. I put her in private school for as long as we could

afford it. Now we are homeschooling. She is a Jr in high school this

year. We were looking at pics of her from when she was younger, and it

is amazing the difference from pre-IVIG and now.

I was lucky enough to have a close friend who keep Ashton when she got

sick, so I could work. I was a single parent from the time she turned 3

until she was 7. (The ex couldn't take the girls being sick so much,

and the baby was so sick.) She would even take her to the dr's for me.

If I hadn't had her, I would have lost my job. She was my life saver.

She did the same with my younger daughter. She has been tested for

several PIDD's and so far nothing. She gets weird things, and I was

told she was immune def. when she was born. She may have outgrown it

now, as the tests have not found anything. I homeschool her too.

L

mom to Ashton 16, CVID, Asthma & dyslexia Marina 13, Asthma

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My son Lucas was born at 36 weeks emergency C-Section due to problems with me.

>

> macey was 36 weeks

>

> Ursula Holleman

>

>

> Re: Question

>

>

> From: susan noonan <bojolais_x3@...>

>

> I have a question for everyone here. Were your children preemies or

> full term? erin was a 36 weeker

> ===

> and

> (neutropenic and immune deficent)

> mom to Evan 6, 4 and Abby Rose (almost 2)

> _________________________________________________________

>

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Thanks for all the responses.. Makes me feel better that other people are going

through the same thing. I have found two people that may be willing to watch my

son so I can pull him from daycare. I hated putting him back in daycare this

week b/c just in Nov. he was sick for two full weeks. Been on three different

antibotics just with in a two week span. I am just hoping the doctor finds

something out soon.

>

> Yes, My son had a horrible time in any kind of day care. We had to keep him in

a one family daycare where there were limited kids. We were told 1-3 maximum.

There are SO many opportunities for kids to share germs at this age. It gets

better when they are a little older and do not put things in their mouths etc.

But.... my son really could not be in groups much until he was on gamma globulin

infusions. Life has gotten pretty normal now. He does very will as long as we

keep up with his infusions sub Q he has less colds than most kids. He is now

almost 14. I know it is hard but it will cut way down on the infections and give

his little body a rest.

>

> BARBIE

>

>

>

>

> ________________________________

> From: Kristy <k_princess15@...>

>

> Sent: Mon, November 30, 2009 4:37:04 PM

> Subject: Question

>

>

> I am new to this & just learning about PID. The doctor things he may have PID

and running more tests on him. She recomminded that I take him out of daycare

and put him with just one or two kids max. Right now he is in an in-home daycare

with just 12 kids. I am trying to find someone to watch him but have not been

able to yet. Did anyone else have to take their kids out of daycare or anything

to keep them healthy? What about public school? How do you keep them healthy is

school?

>

> Thanks

> Kristy

>

>

>

>

>

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Blaek was 21 weeker....1 lb 6oz

I developed HELLP Syndrome & went in to DIC.

Plus Blaek stopped growing in utero....

today However, he is 17 & 1/2 yrs. weighs 170lb. & is 5ft 9 in.

He was Dx. at a ge 3 with Hypogammaglobulinemia/hypocomplimentemia

tthat DX changed at age 6 to CVID with T-Cell Dysfunction & at age 9 changed to

Severe Combined Immunodeficiency with Complete T-Cell Dysfuntion.

They also discovered he has a Mitochondrial deffect.

Mom to Blake

http://www.caringbridge.org/visit/thetalesofblake

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: Kristy <k_princess15@...>

Subject: Re: Question

Date: Tuesday, December 1, 2009, 1:40 PM

 

My son Lucas was born at 36 weeks emergency C-Section due to problems with me.

>

> macey was 36 weeks

>

> Ursula Holleman

>

>

> Re: Question

>

>

> From: susan noonan <bojolais_x3@ ...>

>

> I have a question for everyone here. Were your children preemies or

> full term? erin was a 36 weeker

> ===

> and

> (neutropenic and immune deficent)

> mom to Evan 6, 4 and Abby Rose (almost 2)

> ____________ _________ _________ _________ _________ _________

>

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I have three kids with CVID, and all are on IVIG monthly. Thus far, they've all

been able to attend public school. When they were little, our dr asked me to

quit work and stay home with my boys for one yr, and thought at that time that

one yr would be long enough to get them doing better. Well, Ive been out of work

for 7 yrs now. When they were little, we kept them home a LOT, we even stopped

going to church for a long time, and eventually had to change to a smaller

church.

Since they've been on IVIG, theyve done much better. Now they are 12,9 and 7 and

all doing wonderfully in public school.

valarie

>

> Yes I had to pull mine out of school too..

>

>   

>

> BYrd

>

>

> http://www.caringbridge.org/visit/deanabyrd

>

> _____________________________________________________________________________

> _____________________

>

> -- Question

>

> I am new to this & just learning about PID. The doctor things he may have

> PID and running more tests on him. She recomminded that I take him out of

> daycare and put him with just one or two kids max. Right now he is in an

> in-home daycare with just 12 kids. I am trying to find someone to watch him

> but have not been able to yet. Did anyone else have to take their kids out

> of daycare or anything to keep them healthy? What about public school? How

> do you keep them healthy is school?

>

> Thanks

> Kristy

>

>

>

>

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

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to: http://groups.

> com/group//messages

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Guest guest

Hey

was 2 weeks early due to PreEclampsia and Tori was 4 weeks early.

From: k_princess15@...

Date: Tue, 1 Dec 2009 18:40:44 +0000

Subject: Re: Question

My son Lucas was born at 36 weeks emergency C-Section due to problems with me.

>

> macey was 36 weeks

>

> Ursula Holleman

>

>

> Re: Question

>

>

> From: susan noonan <bojolais_x3@...>

>

> I have a question for everyone here. Were your children preemies or

> full term? erin was a 36 weeker

> ===

> and

> (neutropenic and immune deficent)

> mom to Evan 6, 4 and Abby Rose (almost 2)

> _________________________________________________________

>

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Out of four kids, my three born at term or over are sickest, my oldest was born

at 36weeks, emergency C-section, and is my healthiest kid! she has asthma like

the other kids but no CVID.:)

valarie

> >

> > macey was 36 weeks

> >

> > Ursula Holleman

> >

> >

> > Re: Question

> >

> >

> > From: susan noonan <bojolais_x3@>

> >

> > I have a question for everyone here. Were your children preemies or

> > full term? erin was a 36 weeker

> > ===

> > and

> > (neutropenic and immune deficent)

> > mom to Evan 6, 4 and Abby Rose (almost 2)

> > _________________________________________________________

> >

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,

I did the same thing with my daughter. She is now 19 working part time and

did wonderful in school until she got to high school. It was overwhelming

with her lack of energy. On line school worked well for us for academics

and then she took electives at school to be with her friends but this

allowed her to sleep in everyday and do her school in the evening when she

had more energy. We as a family had to look at her disability and rearrange

our schedules and way of life to make our family “normal”.

Lorri ( CIVID 19 YEARS OLD)

From: [mailto: ] On Behalf Of

osdbmom

Sent: Tuesday, December 01, 2009 5:22 PM

Subject: Re: Question

I have three kids with CVID, and all are on IVIG monthly. Thus far, they've

all been able to attend public school. When they were little, our dr asked

me to quit work and stay home with my boys for one yr, and thought at that

time that one yr would be long enough to get them doing better. Well, Ive

been out of work for 7 yrs now. When they were little, we kept them home a

LOT, we even stopped going to church for a long time, and eventually had to

change to a smaller church.

Since they've been on IVIG, theyve done much better. Now they are 12,9 and 7

and all doing wonderfully in public school.

valarie

>

> Yes I had to pull mine out of school too..

>

>   

>

> BYrd

>

>

> http://www.caringbridge.org/visit/deanabyrd

>

> __________________________________________________________

> _____________________

>

> -- Question

>

> I am new to this & just learning about PID. The doctor things he may have

> PID and running more tests on him. She recomminded that I take him out of

> daycare and put him with just one or two kids max. Right now he is in an

> in-home daycare with just 12 kids. I am trying to find someone to watch

him

> but have not been able to yet. Did anyone else have to take their kids out

> of daycare or anything to keep them healthy? What about public school? How

> do you keep them healthy is school?

>

> Thanks

> Kristy

>

>

>

>

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

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to: http://groups.

> com/group//messages

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Guest guest

Lori, I am moving back to WA state in 2 weeks. What online school did your

daughter do? My son is in the 8th grade and getting up is VERY hard for him. He

just struggles so much trying to keep up with his energy level. I try to think

that with Gamma that all is fine but it is good to hear that some of the kids

still have fatigue issues. He is also Bipolar so it is hard to know what drives

what with his sleep issues.

BARBIE

________________________________

From: Lorri Kraft <llkraft@...>

Sent: Tue, December 1, 2009 7:28:30 PM

Subject: RE: Re: Question

,

I did the same thing with my daughter. She is now 19 working part time and

did wonderful in school until she got to high school. It was overwhelming

with her lack of energy. On line school worked well for us for academics

and then she took electives at school to be with her friends but this

allowed her to sleep in everyday and do her school in the evening when she

had more energy. We as a family had to look at her disability and rearrange

our schedules and way of life to make our family “normalâ€.

Lorri ( CIVID 19 YEARS OLD)

From: [mailto: ] On Behalf Of

osdbmom

Sent: Tuesday, December 01, 2009 5:22 PM

Subject: Re: Question

I have three kids with CVID, and all are on IVIG monthly. Thus far, they've

all been able to attend public school. When they were little, our dr asked

me to quit work and stay home with my boys for one yr, and thought at that

time that one yr would be long enough to get them doing better. Well, Ive

been out of work for 7 yrs now. When they were little, we kept them home a

LOT, we even stopped going to church for a long time, and eventually had to

change to a smaller church.

Since they've been on IVIG, theyve done much better. Now they are 12,9 and 7

and all doing wonderfully in public school.

valarie

>

> Yes I had to pull mine out of school too..

>

>   

>

> BYrd

>

>

> http://www.caringbridge.org/visit/deanabyrd

>

> __________________________________________________________

> _____________________

>

> -- Question

>

> I am new to this & just learning about PID. The doctor things he may have

> PID and running more tests on him. She recomminded that I take him out of

> daycare and put him with just one or two kids max. Right now he is in an

> in-home daycare with just 12 kids. I am trying to find someone to watch

him

> but have not been able to yet. Did anyone else have to take their kids out

> of daycare or anything to keep them healthy? What about public school? How

> do you keep them healthy is school?

>

> Thanks

> Kristy

>

>

>

>

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

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to: http://groups.

> com/group//messages

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