starting all over

[Guest guest]

In a message dated 4/7/2006 5:32:30 PM Pacific Daylight Time, RCurk@...

writes:

NO NO Doc, it's not a

HOPE thing, it's a WON " T EVER HAPPEN thing! Sigh.

,

Your family is in my prayers.

Sandi, Mom to --age 13--CVID

[Guest guest]

In a message dated 4/7/2006 5:32:30 PM Pacific Daylight Time, RCurk@...

writes:

NO NO Doc, it's not a

HOPE thing, it's a WON " T EVER HAPPEN thing! Sigh.

,

Your family is in my prayers.

Sandi, Mom to --age 13--CVID

[Guest guest]

Dear ,

Sending a hug your way and prayers for your peace!

In His service,

dale

[Guest guest]

((((HUGS))))) I am so sorry that you are having to deal with this, .

I wish I knew what to say! I will be praying for you and for Cody. Sending

lots of get well wishes and prayers your way!

~Pattie Curran~

Piedmont Triad, NC

Elbridge Gerry--signer of the Declaration of Independence, Govenor of

Massachusetts and Vice President of the United States under

Madison....

Ever wonder where the term gerrymandering comes from? While serving as

governor of Massachusetts from 1810 to 1812, Elbridge Gerry helped enact a

law dividing the Bay State into political districts favorable to his own

party. This resulted in some odd shaped districts. One district looked like

a salamander, someone said. Someone else joked that it looked more like a

" gerrymander, " making a play on the governor's name. To this day, the

practice of drawing boundary lines to favor a political party or group is

called gerrymandering.

_____

_____

[Guest guest]

Here's another hug sent your way and many prayers too! Hang in

there.

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def,

GERD, possible Celiac)

>

> I feel such a level of frustration now I can't even put it into

words. I

> know you all know what I am talking about so I feel safe venting

here. My

> husband is also getting frustrated BUT isn't one to talk about it

becaus then it

> makes all too real.

>

> My baby Cody. . . is working on being our next PID kid. He is

following in

> his brother, Johsua's, footsteps exactly. It's actually scary how

much alike

> they are and how Cody is mimicing ALL of 's problems. I

just pray every

> day that he doesn't end up with cancer as well. (That is

definately NOT to

> imply that PID causes cancer, it's just that undoubtedly

had an

> undiagnosed PID but developed cancer before we got the chance to

test him and Cody is .

> . . well let's just say, invasion of the body snatchers handed me

a son 10

> years later.)

>

> First I should tell you that Cody has needed nebulizer treatments

since he

> was 2 months old for " wheezing " without a known cause. The nebs

help. But no

> answers to why he has sooo much chest congestion and wheezing all

the time.

> Treated aggressively for reflux (which was negative on barium

swallow) with no

> improvement in the congestion. Did the dairy free diet with no

improvement

> either. He is exclusively breatfed at this time with some baby

fruits and

> veggies daily. He is now just shy of 7 months old. Had a positve

nasal swab ((+)

> Strep) at 5 months, went on Augmentin, on the 9th day of

antibiotic developed

> severe wheezing and severely infected ears, onto Cefzil for 10

days. Finished

> Cefzil and on day 11 we go to doctor for recheck and to let her

know that he

> is wheezing again. She says that one ear is still infected but

the other looks

> good and the infected one is much better than before. So we are

going to do

> another round of Cefzil. As for the wheezing, just do nebs, maybe

we should

> add Pulmicort to the mix after this infection clears up. No

offers of reasons

> WHY he needs them. That was Wednesday afternoon.

>

> Wednesday night - Cody wakes up burning up. 103.5 degrees.

He’s having a

> lot of trouble breathing and he is very uncomfortable. I give him

Tylenol and

> back to back breathing treatments. He finally falls asleep around

5am. I call

> the doctor, they tell me to wait another 24 hours to let the

antibiotic kick

> in. I wait. . . By 1:00 in the afternoon on Thursday, he is

burning up again

> now the breathing treatments aren’t helping. I call the doctor

and tell her he

> ’s going to the ER. There he has a temp of 105 degrees ON

TYLENOL! He is

> retracting and breathing very fast (50). It takes us over an hour

to get a

> room. Then it’s an x-ray, bloodwork, an IV, a urine

catheterization (which didn’

> t work so he had to wear a little pee bag), and a nasal wash to

test for RSV

> and the flu. I couldn’t help but think " Why is this happening

again to one of

> my babies!!!! " He’s only 6 months old and already had 3 ER

visits on his 3rd

> antibiotic and gets more breathing treatments than anyone of the

kids did at

> the same age! In the end, he had a positive x-ray for pneumonia.

But his labs

> looked good (WBC was 9.6, but we have nothing to compare it to

since he has

> never had a CBC done since he was born), he was negative for RSV

and the flu

> and he didn’t require oxygen. They felt that if I would watch

him closely at

> home, then they would rather not admit him. I was fine with this,

as the

> hospital is full of flu and RSV right now. He is on another

antibiotic, Amoxil and

> every 2 hour breathing treatments along with the Motrin and

Tylenol. That

> was yesterday and he has yet to break the fever. He is running

103.5 temp as we

> speak. I’m hoping the Motrin will kick in soon. But his

breathing does seem

> a BIT better today. The ER doc was one of s oncologists and

remembered

> very well, s complicated medical history before even being

treated for

> his brain tumor. So he lets me know that he is drawing

Immunoglobulin levels

> as part of his blood work. At least his doctor will have a bit of

lab work to

> start with when they refer us to the immunologist. I couldn't

believe that

> the ER doc who had just met Cody was already suggesting he needed

a full workup

> and was going to start it for us. Then he said the scariest thing

he could. .

> . " Now let's hope the baby doesn't get any tumors. " NO NO Doc,

it's not a

> HOPE thing, it's a WON " T EVER HAPPEN thing! Sigh.

>

> Ok, I'm all done venting and the baby's swing sounds like some

sick cow

> trying to sing lullabies (obviously needs some new batteries!).

>

> Take Care and God Bless,

>

>

> Mommy to:

> Annette 16yo, selective antibody deficiency, cp, devlopmental

delays, g-tube,

> IVIG x 5 years, Sub Q IG x 1 yr now and LOVING it. Every bit a

teenager (both

> for the good and the bad ) LOL.

> 10yo, previous B and T cell deficiencies, IVIG x 1 year

(off now over

> 2 years), daily prophylaxis, brain tumor survivor, hearing

impaired, seizure

> disorder, learning disabled, and one heck of a " WWE wrestler " !

> Trayvon 7yo, Ivemark Syndrome, severe congenital heart defects,

asplenia,

> malrotated intestines, microcephalic, migraines, severe reflux and

an imagination

> I can't keep up with for one minute!

> Marriela 3yo, Micro premie (26 weeker, 1 lb, 12oz), NICU x 4

months, severe

> asthma, devlopmental delays, mild cp, reflux, and gives us a

serious run for

> our money every single day!

> and last but not least,

> Cody 6mo, if he keeps up his current course, will be my next PID

kid. But a

> wonderfully happy, if not healthy baby.

>

> God has a serious sense of humor now doesn't he! LOLOLOLOL

> www.caringbridge.com/ny/my2angels

>

>

>

[Guest guest]

Here's another hug sent your way and many prayers too! Hang in

there.

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def,

GERD, possible Celiac)

>

> I feel such a level of frustration now I can't even put it into

words. I

> know you all know what I am talking about so I feel safe venting

here. My

> husband is also getting frustrated BUT isn't one to talk about it

becaus then it

> makes all too real.

>

> My baby Cody. . . is working on being our next PID kid. He is

following in

> his brother, Johsua's, footsteps exactly. It's actually scary how

much alike

> they are and how Cody is mimicing ALL of 's problems. I

just pray every

> day that he doesn't end up with cancer as well. (That is

definately NOT to

> imply that PID causes cancer, it's just that undoubtedly

had an

> undiagnosed PID but developed cancer before we got the chance to

test him and Cody is .

> . . well let's just say, invasion of the body snatchers handed me

a son 10

> years later.)

>

> First I should tell you that Cody has needed nebulizer treatments

since he

> was 2 months old for " wheezing " without a known cause. The nebs

help. But no

> answers to why he has sooo much chest congestion and wheezing all

the time.

> Treated aggressively for reflux (which was negative on barium

swallow) with no

> improvement in the congestion. Did the dairy free diet with no

improvement

> either. He is exclusively breatfed at this time with some baby

fruits and

> veggies daily. He is now just shy of 7 months old. Had a positve

nasal swab ((+)

> Strep) at 5 months, went on Augmentin, on the 9th day of

antibiotic developed

> severe wheezing and severely infected ears, onto Cefzil for 10

days. Finished

> Cefzil and on day 11 we go to doctor for recheck and to let her

know that he

> is wheezing again. She says that one ear is still infected but

the other looks

> good and the infected one is much better than before. So we are

going to do

> another round of Cefzil. As for the wheezing, just do nebs, maybe

we should

> add Pulmicort to the mix after this infection clears up. No

offers of reasons

> WHY he needs them. That was Wednesday afternoon.

>

> Wednesday night - Cody wakes up burning up. 103.5 degrees.

He’s having a

> lot of trouble breathing and he is very uncomfortable. I give him

Tylenol and

> back to back breathing treatments. He finally falls asleep around

5am. I call

> the doctor, they tell me to wait another 24 hours to let the

antibiotic kick

> in. I wait. . . By 1:00 in the afternoon on Thursday, he is

burning up again

> now the breathing treatments aren’t helping. I call the doctor

and tell her he

> ’s going to the ER. There he has a temp of 105 degrees ON

TYLENOL! He is

> retracting and breathing very fast (50). It takes us over an hour

to get a

> room. Then it’s an x-ray, bloodwork, an IV, a urine

catheterization (which didn’

> t work so he had to wear a little pee bag), and a nasal wash to

test for RSV

> and the flu. I couldn’t help but think " Why is this happening

again to one of

> my babies!!!! " He’s only 6 months old and already had 3 ER

visits on his 3rd

> antibiotic and gets more breathing treatments than anyone of the

kids did at

> the same age! In the end, he had a positive x-ray for pneumonia.

But his labs

> looked good (WBC was 9.6, but we have nothing to compare it to

since he has

> never had a CBC done since he was born), he was negative for RSV

and the flu

> and he didn’t require oxygen. They felt that if I would watch

him closely at

> home, then they would rather not admit him. I was fine with this,

as the

> hospital is full of flu and RSV right now. He is on another

antibiotic, Amoxil and

> every 2 hour breathing treatments along with the Motrin and

Tylenol. That

> was yesterday and he has yet to break the fever. He is running

103.5 temp as we

> speak. I’m hoping the Motrin will kick in soon. But his

breathing does seem

> a BIT better today. The ER doc was one of s oncologists and

remembered

> very well, s complicated medical history before even being

treated for

> his brain tumor. So he lets me know that he is drawing

Immunoglobulin levels

> as part of his blood work. At least his doctor will have a bit of

lab work to

> start with when they refer us to the immunologist. I couldn't

believe that

> the ER doc who had just met Cody was already suggesting he needed

a full workup

> and was going to start it for us. Then he said the scariest thing

he could. .

> . " Now let's hope the baby doesn't get any tumors. " NO NO Doc,

it's not a

> HOPE thing, it's a WON " T EVER HAPPEN thing! Sigh.

>

> Ok, I'm all done venting and the baby's swing sounds like some

sick cow

> trying to sing lullabies (obviously needs some new batteries!).

>

> Take Care and God Bless,

>

>

> Mommy to:

> Annette 16yo, selective antibody deficiency, cp, devlopmental

delays, g-tube,

> IVIG x 5 years, Sub Q IG x 1 yr now and LOVING it. Every bit a

teenager (both

> for the good and the bad ) LOL.

> 10yo, previous B and T cell deficiencies, IVIG x 1 year

(off now over

> 2 years), daily prophylaxis, brain tumor survivor, hearing

impaired, seizure

> disorder, learning disabled, and one heck of a " WWE wrestler " !

> Trayvon 7yo, Ivemark Syndrome, severe congenital heart defects,

asplenia,

> malrotated intestines, microcephalic, migraines, severe reflux and

an imagination

> I can't keep up with for one minute!

> Marriela 3yo, Micro premie (26 weeker, 1 lb, 12oz), NICU x 4

months, severe

> asthma, devlopmental delays, mild cp, reflux, and gives us a

serious run for

> our money every single day!

> and last but not least,

> Cody 6mo, if he keeps up his current course, will be my next PID

kid. But a

> wonderfully happy, if not healthy baby.

>

> God has a serious sense of humor now doesn't he! LOLOLOLOL

> www.caringbridge.com/ny/my2angels

>

>

>

[Guest guest]

>

> My baby Cody. . . is working on being our next PID kid.

,

I am so sorry. You will all be in my prayers....you are an amazing

mom, and those kids are all lucky to have you. Hang in there.

Ana 14 mo

[Guest guest]

In a message dated 4/9/2006 1:57:07 P.M. Eastern Standard Time,

writes:

:

I'm worried about what's going on... I have seen this when the baby is on

abx

and STILL has the infection and then gets worse... is the new abx

Amoxicillin? Because if it is, I would worry that's really not strong

enough. Cefzil is a

good drug but Amoxicillin is pretty wimpy.

I'm sorry you're going through all this. Don't be afraid to go right back to

that ER if he gets worse though --

First, I want to thank EVERYONE for their prayers and support. I was upset

and frustrated with what was happening. I am doing much better now, after

seeing your words of encouragment as well as taking time to remember that

is doing great right now. So there is no reason I should worry about

things

until there is something to worry about. Does that make sense??? LOL

Hi ,

Yes, the new abx was Amoxilicillin. The ER doctor felt that he was too

young to try to many other ones and he had already done the cephlasporin route

and failed it. I had inquired into doing a dose of Rocephin and THEN doing the

Amoxil, but then she informed me that the other ER doctor felt that this was

viral pneumonia because his white count was normal and no shift. The Amoxil

was for his ear - which became infected on the Amoxil (so I didn't

understand the logic there). He is actually doing better now than he was on

Thursday.

He was still having high fevers through Saturday and then last night things

seem to have broken. He was not retracting nearly as much and his breathing

had slowed down quite a bit. Today he is croupy again and flirting with

another temp and back up to every 2-3 hour nebs due to wheezing and mild

retractions. But he is eating A LOT better and was much more playful today

than he

has in the past 3 days. Tomorrow we go to the Ped for a follow-up ER visit

and I will find out the results of the Immunoglobulin levels. I am not

expecting low numbers, never had low numbers. had no response to

polysaccharides AND no response to Candida or Tetanus. He failed to make

titers

to ANY of his immunizations and was clinically doing poorly. So we did 1.5

years of IVIG with amazing results. He was trialed off of the IVIG and

quickly developed pneumonia and then a sinus infection followed by a cellulitis

due to a mosquito bite and an oral abcess. However, his labs and since come

back and his numbers had all improved right into the normal range for

everything. He had developed nice responses to Tetanus, Candida and his post

pneumococal levels were all in the normal range. So they didn't care how many

infections he had, his numbers said he didn't need IVIG. It was his

Pulomonologist

that put him on the every other day Zithromax 500mg and it was a God Send!!

As long as he is on this, his lungs are great and no infections. We trialed

off it only once and he had a sinus infection within 7 days. That was 3

years ago and he is still taking it with NO breakthrough infections at all. He

has also received ALL of his immunizations again and we will be retesting

them in the near future to see if he has kept his titers.

Sooooo, I don't expect Cody to have low numbers, just crappy responses. LOL

I'll let you know how the recheck goes.

In my thoughts and prayers,

[Guest guest]

Kombucha Greetings..........I wrote a few days ago and as of yet have

received no response also have written a few of you off line for some

new scobies............ssssooooooooooooo I'll try again:)

Read through and if you have questions feel free to ask!!!

If you don't already have a SCOBY, let me know.

http://health. groups.. com/group/ original_ kombucha/

files/Kombucha% 20Tea%20Recipes/

Gayle

WI/USA(near Oshkosh)

Gayle, or anyone who may be tuned in I am looking for at least 3 new

scobies and some well balanced starter tea as mine got all out of

balance during the winter. Apparently I've lost a significant yeast

population in my brews and after a year of making PRIMO KOMBUCHA I am

not sure what is being produced in my KOMBUCHA KITCHEN now. I have

read and reread " The Balancing Act " and adjusted and modified,

etc...etc...so right now because I'm not sure that the KT I am

brewing is doing us any good or has the good stuff in it, we are

spending a fortune on GT Dave's.

So I am at the point I want to start all over and hopefully by the

time next winter rolls around I can remedy this problem.

Rae our Kombucha Komrad in Idaho so graciously offered to meet us on

our move back to Oklahoma, and give me some cultures but I was so

packed and our caravan was not able to swing thru Boise and make the

connection.

If you are out there and you have some vibrant cultures I am willing

to pay your shipping and handling!!

Kombucha forever~~~~~~~Lonnie

[Guest guest]

Lonnie....I can send you cultures and starter....will three cultures and

three pints of very acidic starter suffice?

Catch me off list and we'll exchange addresses.... :- )

Gayle ....still near Oshkosh, WI

starting all over

> Kombucha Greetings..........I wrote a few days ago and as of yet have

> received no response also have written a few of you off line for some

> new scobies............ssssooooooooooooo I'll try again:)

>

> Read through and if you have questions feel free to ask!!!

> If you don't already have a SCOBY, let me know.