From

[Guest guest]

I think you absolutely right. I have not written lately because I was in the

hospital, had ablation and I have so very upset I kept to myself. I am going

through Post traumatic shock, this is the first time I have even shared this

much

Phyllis

[Guest guest]

What is ablation? I hear a lot of you talk about it, and I don't understand what it is?

Ruth in PA

[Guest guest]

Hello Ruth;

In a normal heart there are two electrical spots (simply put) which are called nodes but when you have a heart problem alot of people get irregular heartbeats like vt(ventricular Tachycardia) where the bottom portion of the heart might have more than one spot that passes the electricity from the brain thus causing the heart having to beat prematurely before it filles up with blood. so insimple words Ablation is the burning process of these extra electrical nodes so that the lesser the nodes are less likely you get a vt or a vfib(ventricular fibrillation).Good Luck Good Health Good Heart. TURK

Re: From

What is ablation? I hear a lot of you talk about it, and I don't understand what it is?

Ruth in PAPlease visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

Hi Phyllis;

I am sorry that you had to go thru it alone Please feel free to contact me anytime you'd like. I do not qualify to give advice but I think seeing a physiciatrist might help, when i was and am going thru the post traumatic syndrome i went and still go to physiciatrist (?? dont know how to spell it) and take zoloft(antidepressant) and clonopin( anti-anxiety med). Good Luck To you I am on Paltalk and my nick name is turk123 so if you download the program from www.paltalk.com you can talk to me anytime you'd like. Good Luck Good Health and Good Heart. TURK

Re: From

I think you absolutely right. I have not written lately because I was in the hospital, had ablation and I have so very upset I kept to myself. I am going through Post traumatic shock, this is the first time I have even shared this muchPhyllisPlease visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

Thanks for the information on the ablation. Do people get these if the have defibrillators? I would think it would keep the beat regular. Is it something beyond what the defib or pacemaker can do? You guys know so much that it amazes me. I'm doing well right now and I'm very thankful for that but I feel bad when anyone comes on here saying they were shocked or had to be in the hospital because I've been there too.

Ruth in PA

[Guest guest]

TURK

I am so sorry about not being online of a late but had some more problems with the defib its getting to me I can tell you I could say something but will not LOL

I am using the hospitals computer at the momnet hope to be home at the weekend and try to get on the computer for a while as has told be I have so many e-mails its unreal...just like me gone away a little while and things go pear shaped ~S~

I will e-mail as soon as i can OK

That care Truk and to all of you and will be abck at the keyboard real soon

Colin of Zapper UK http://www.zapperuk.freeuk.com

TURK <goturk1@...> wrote:

Hi Phyllis;

I am sorry that you had to go thru it alone Please feel free to contact me anytime you'd like. I do not qualify to give advice but I think seeing a physiciatrist might help, when i was and am going thru the post traumatic syndrome i went and still go to physiciatrist (?? dont know how to spell it) and take zoloft(antidepressant) and clonopin( anti-anxiety med). Good Luck To you I am on Paltalk and my nick name is turk123 so if you download the program from www.paltalk.com you can talk to me anytime you'd like. Good Luck Good Health and Good Heart. TURK

Re: From

I think you absolutely right. I have not written lately because I was in the hospital, had ablation and I have so very upset I kept to myself. I am going through Post traumatic shock, this is the first time I have even shared this muchPhyllisPlease visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

Sorry I am still here ust been under the weather for a few days then my

computer was under the weather. I am stil sending messages and cards also

Sharon

[Guest guest]

Dear Phyllis, Hang in there girl, The post traumatic for me comes and goes.

I think I am a-OK then something happens some little thing and I am right bak

there in the front line again. The other day I didn't feel well I managed to

work myself up into quite a fit and all it managed to do was exhaust me and

waste a day of my life. At the time though I couldn't get beyond it. I kept

feeling just like I did right before I went out last time and was gone to the

dark for a while. I started thinking what if it happens and I am here and no

one is with me. What if I don't come back what if my icd isn't enough what

if they don't find me in time. Should I call someone? Should I go tot he

hospital and tell them I think this is going to happen should I cal the reuse

squad? Should I just sit here and take it easy? What if What if. And it

just got bigger and bigger until I totally panicled

[Guest guest]

Hey Sharon;

It was as if you were talking about what happened to me a week ago. I dont think you ever get rid of the panics but you just get used to them and don't notice them until they creep up on you. It is almost funny how you described everything the way i felt. If you fell that way again e mail the group and since most of us check the e mail e few times a day we should all meet at the zapper chat. I think a lot of people would say yes. TURK

Re: From

Dear Phyllis, Hang in there girl, The post traumatic for me comes and goes. I think I am a-OK then something happens some little thing and I am right bak there in the front line again. The other day I didn't feel well I managed to work myself up into quite a fit and all it managed to do was exhaust me and waste a day of my life. At the time though I couldn't get beyond it. I kept feeling just like I did right before I went out last time and was gone to the dark for a while. I started thinking what if it happens and I am here and no one is with me. What if I don't come back what if my icd isn't enough what if they don't find me in time. Should I call someone? Should I go tot he hospital and tell them I think this is going to happen should I cal the reuse squad? Should I just sit here and take it easy? What if What if. And it just got bigger and bigger until I totally panicledPlease visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

I think that's what this and all other support 'boards and chats are

all about... we keep offering each other support 'til we get to the

point where we know how to deal w/all that has occured in our life...

hang in there guys... we're here for you

JES in NJ

God Bless America

> Dear Phyllis, Hang in there girl, The post traumatic for me comes

and goes.

> I think I am a-OK then something happens some little thing and I am

right bak

> there in the front line again. The other day I didn't feel well I

managed to

> work myself up into quite a fit and all it managed to do was

exhaust me and

> waste a day of my life. At the time though I couldn't get beyond

it. I kept

> feeling just like I did right before I went out last time and was

gone to the

> dark for a while. I started thinking what if it happens and I am

here and no

> one is with me. What if I don't come back what if my icd isn't

enough what

> if they don't find me in time. Should I call someone? Should I go

tot he

> hospital and tell them I think this is going to happen should I cal

the reuse

> squad? Should I just sit here and take it easy? What if What if.

And it

> just got bigger and bigger until I totally panicled

[Guest guest]

In a message dated 2/21/02 3:54:01 PM Eastern Standard Time, Naojeca@... writes:

> Dear Phyllis, Hang in there girl, The post traumatic for me comes

and goes.

> I think I am a-OK then something happens some little thing and I am

right bak

> there in the front line again. The other day I didn't feel well I

managed to

> work myself up into quite a fit and all it managed to do was

exhaust me and

> waste a day of my life. At the time though I couldn't get beyond

it. I kept

> feeling just like I did right before I went out last time and was

gone to the

> dark for a while. I started thinking what if it happens and I am

here and no

> one is with me. What if I don't come back what if my icd isn't

enough what

> if they don't find me in time. Should I call someone? Should I go

tot he

> hospital and tell them I think this is going to happen should I cal

the reuse

> squad? Should I just sit here and take it easy? What if What if.

And it

> just got bigger and bigger until I totally panicled

[Guest guest]

In a message dated 2/21/02 2:16:12 PM Eastern Standard Time, IIPistacio@... writes:

Dear Phyllis, Hang in there girl, The post traumatic for me comes and goes.

I think I am a-OK then something happens some little thing and I am right bak

there in the front line again. The other day I didn't feel well I managed to

work myself up into quite a fit and all it managed to do was exhaust me and

waste a day of my life. At the time though I couldn't get beyond it. I kept

feeling just like I did right before I went out last time and was gone to the

dark for a while. I started thinking what if it happens and I am here and no

one is with me. What if I don't come back what if my icd isn't enough what

if they don't find me in time. Should I call someone? Should I go tot he

hospital and tell them I think this is going to happen should I cal the reuse

squad? Should I just sit here and take it easy? What if What if. And it

just got bigger and bigger until I totally panicled

[Guest guest]

,

I hope is feeling better soon. Take care--

Sandi, 's Mom

[Guest guest]

:

I'm sorry has pneumonia again. So does that explain the grunting? I

mean, can you use that as another symptom for him? Hope he's better soon --

(mom to , age 3-1/2. Currently has polysaccharide antibody def,

previously had transient IgG, IgA, t-cell & other defs)

[Guest guest]

, I wonder with double pneumonia and the recurrent times he has had it I

wonder if you could do a little pushing to get an appt. atleast scheduled prior

to your appt with the reumatologist. It would seem that if they made an extra

call on your behalf that could be seen hopefully within the next two

weeks or sooner. I know medical systems are different everywhere from the bit I

know it sounds like it is emergent. If nothing else he is really having a hard

time. I have had to push in the past because if I do not no one else will. We

become #s on a piece of paper or a computer screen until we raise our voices out

of the chaos. It might be worth a call. Are you doing nebulizer treatments? Is

he on Prednisone? Just concerned. BARBIE(Lucas, 6, CVID)

[Guest guest]

, I wonder with double pneumonia and the recurrent times he has had it I

wonder if you could do a little pushing to get an appt. atleast scheduled prior

to your appt with the reumatologist. It would seem that if they made an extra

call on your behalf that could be seen hopefully within the next two

weeks or sooner. I know medical systems are different everywhere from the bit I

know it sounds like it is emergent. If nothing else he is really having a hard

time. I have had to push in the past because if I do not no one else will. We

become #s on a piece of paper or a computer screen until we raise our voices out

of the chaos. It might be worth a call. Are you doing nebulizer treatments? Is

he on Prednisone? Just concerned. BARBIE(Lucas, 6, CVID)

[Guest guest]

..thanks for your concern. I have my Doc appt set for tomorrow and it will be interesting to see what they come up with. I am truly puzzled. The swelling has gone done slightly but the site is red and firmer...if that makes any sense. I still am not running a fever...but am uncomfortable and fatigued beyond belief....

Anyway...there is your daily- -update....stay tuned....

I'll let you know what I find out tomorrow!!

love,

[Guest guest]

Hi , yes your email came through fine. I've just got to get the kids off to

bed and I'll come back to update on our respiratory physio and feeding team

appts of the day.

from

Hi , this is again. My computer just crashed(it's a whole 48 hours

old) so I had to restore everything and now it seems to be set up differently. I

wish I was computer smart.Oh well.again I want to see if this goes through.

thanks

[Guest guest]

Hi there we would love for you to share your art with us. I have

done art since I was your age too. My favorite is pencil and ink art but I

used to use pastel chalks and now for a few years I oil paint on old antique

saw and things. It is so nice that you wrote to us today and I hope to

learn more about you. Till soon, Pattymelt

Re: From

> Hello!

> This is . I am not left handed but I can write a little with my

left hand. I like building leggo, that's what I am doing right now. I would

like to see some of your art. I like to draw trucks and cars and helicopters

and planes. I like to draw buildings also. I can share some of my pictures

with you.

>

> Your Friend

[Guest guest]

- I just wanted to stress that it can sometimes take up to a year before

results are seen from infusions.

Sometimes it kicks in as early as 6 months. But the initial doses should be at

least weight appropriate with the

minimal dose being somewhere around 400 mg per kilogram of body weight.

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Hi Ursula,

I remember that, it is weird, we can see some improvement already, less fatigue,

not feeling sick every day, but boy it does wear off after those 3 weeks. She is

started at 400mg/kg, she weighs around 49-50 lbs. She keeps gaining and losing

that pound, time and time again. She is very thin right now. I know it is hard

to wait, you want to see improvement right away, we will take the wait and see

approach to see if this dose is going to work out, nothing else to do really.

Thanks for your input.Take care.

Re: from

- I just wanted to stress that it can sometimes take up to a year before

results are seen from infusions.

Sometimes it kicks in as early as 6 months. But the initial doses should be

at least weight appropriate with the

minimal dose being somewhere around 400 mg per kilogram of body weight.

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID)

http://members.cox.net/maceyh<http://members.cox.net/maceyh>

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org<http://www.primaryimmune.org/>

/</>

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

-unsubscribe@groups<mailto:-unsubscribe@groups>.

To search group archives go to:

/messages<PedP\

ID/messages>

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Incredibly wonderful news!!!! The insurance shouldn't give you any

hassles as long as the doctor documents the need for it. But if they do

-- I've got lots of numbers for you to call!!!!

In His service,

Dale

THOMAS RUSSO wrote:

>She is doing well, those three weeks are cool, she is a kid we don't know,

lively, not moody, no " I don't feel well every day( until that third week that

is) eating well. she is back to her weight from last January( she had lost a few

pounds) and finally gained it back.

>

>

[Guest guest]

I LOVE it!!! And yes she is a treasure!

From and :

I colored my hair the other night(I always do, but decided to use a new color to save a few bucks!)

says-"Your hair is RED!"

says-"Your hair issssss......orange with rainbows."

BOYS! What do they know! TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: Gail <patsmum2000@...>Congenital <CongenitalScoliosisSupport >; infantile scoliosis treatment ; nov98moms Sent: Sat, July 24, 2010 5:26:41 AMSubject: From

I got my hair cut the other day.

looked at it and said "Hey Mom! I can see where the white is growing!"

Me: "Yeah, it's because you are growing up!"

Isn't she a treasure??

[Guest guest]

I LOVE it!!! And yes she is a treasure!

From and :

I colored my hair the other night(I always do, but decided to use a new color to save a few bucks!)

says-"Your hair is RED!"

says-"Your hair issssss......orange with rainbows."

BOYS! What do they know! TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: Gail <patsmum2000@...>Congenital <CongenitalScoliosisSupport >; infantile scoliosis treatment ; nov98moms Sent: Sat, July 24, 2010 5:26:41 AMSubject: From

I got my hair cut the other day.

looked at it and said "Hey Mom! I can see where the white is growing!"

Me: "Yeah, it's because you are growing up!"

Isn't she a treasure??

[Guest guest]

Aging is the ultimate slap in the face by a wet squirrel. And then our kids get to rub it in : ) 's so funny- happy birthday, Gail! Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: Gail <patsmum2000@...>Congenital <CongenitalScoliosisSupport >; infantile scoliosis treatment ; nov98moms Sent: Sat, July 24, 2010 3:26:41 AMSubject: From

I got my hair cut the other day.

looked at it and said "Hey Mom! I can see where the white is growing!"

Me: "Yeah, it's because you are growing up!"

Isn't she a treasure??