Help

[Guest guest]

>

>

from Dale, Mom to Katy, CVID, age 19

Brandee, I'm sorry things look so confusing right now. Actually at 4,

it's hard to know what all might be changing and happening to Caden.

Maybe he's had a immune deficiency that he's in the process of

outgrowing. I want to assure you that it sometimes takes a couple of

years to get it all sorted out. If you get to an immunologist who knows

about PIDS it can sometimes shorten the wait -- but even then, they want

to test and re-test everything. Because this is such a rare condition,

many of the labs are not standardized, so tests come back funny

sometime. I've been gone most of the summer and haven't kept track of

all our new people, so I'm sorry if I'm repeating yourself. But, there

are some basic questions I want you to answer for yourself. Number 1

- do you feel that this doctor is seeking to help Caden? Do you feel

comfortable talking to him/her and asking questions? Is this doctor a

specialist in PIDs or is his/her practice limited to allergy patients?

Do you feel comfortable that this doctor will seek outside help if

he/she does not know the answers? These are all important questions

because you need to be comfortable with Caden's care. Secondly, you

need to take a deep breath and remind yourself that what is important is

to find out the Truth. God's Word tells us that the Truth will set you

free. No matter how hard that Truth is -- it's better to know the Truth

than to " not know' " . With PID it is absolutely vital that they

determine exactly what is wrong with Caden before they begin treatment.

If it's t-cells, then your doctor is correct, IgG replacement won't

help a t-cell problem. It may take a few more months of vaccinations,

testing of titers and research before your doctors can definitively give

you answers. And then, don't ever lose hope -- because there's always

the possibility that God will intervene and heal. We've had several

families on this list whose children have " outgrown " the deficiency.

So, don't ever give up. Caden needs you to keep your eyes focused on

hope and it sounds like you've placed your hope in God, from Whom cometh

our help!

It helped me to realize that the immune system is very complex -- sorta

like a jigsaw puzzle. It's a puzzle that the doctors need to figure

out. They will continue to look at all the puzzle pieces until they

figure out how best to treat Caden. So, your prayers for the doctors

will be most valuable as you pray for their wisdom to sort it all out.

If the above questions about your doctor bother you and you need to

decide where to go for better information. I suggest that you call the

Immunne Deficiency Foundation and ask them where to find an immunologist

with special training for treating PIDs. That number is 1-800-296-4433.

But, since your doctors know the difference between B and t-cells, you

may be dealing with someone with some expertise already. In that case

-- pray for them and ask God for the patience to see this diagnosis

through until Truth is discovered.

May God bless you and give you comfort in the meantime. Waiting is the

hardest part!!!!!

In His service,

Dale

[Guest guest]

>

>

from Dale, Mom to Katy, CVID, age 19

Brandee, I'm sorry things look so confusing right now. Actually at 4,

it's hard to know what all might be changing and happening to Caden.

Maybe he's had a immune deficiency that he's in the process of

outgrowing. I want to assure you that it sometimes takes a couple of

years to get it all sorted out. If you get to an immunologist who knows

about PIDS it can sometimes shorten the wait -- but even then, they want

to test and re-test everything. Because this is such a rare condition,

many of the labs are not standardized, so tests come back funny

sometime. I've been gone most of the summer and haven't kept track of

all our new people, so I'm sorry if I'm repeating yourself. But, there

are some basic questions I want you to answer for yourself. Number 1

- do you feel that this doctor is seeking to help Caden? Do you feel

comfortable talking to him/her and asking questions? Is this doctor a

specialist in PIDs or is his/her practice limited to allergy patients?

Do you feel comfortable that this doctor will seek outside help if

he/she does not know the answers? These are all important questions

because you need to be comfortable with Caden's care. Secondly, you

need to take a deep breath and remind yourself that what is important is

to find out the Truth. God's Word tells us that the Truth will set you

free. No matter how hard that Truth is -- it's better to know the Truth

than to " not know' " . With PID it is absolutely vital that they

determine exactly what is wrong with Caden before they begin treatment.

If it's t-cells, then your doctor is correct, IgG replacement won't

help a t-cell problem. It may take a few more months of vaccinations,

testing of titers and research before your doctors can definitively give

you answers. And then, don't ever lose hope -- because there's always

the possibility that God will intervene and heal. We've had several

families on this list whose children have " outgrown " the deficiency.

So, don't ever give up. Caden needs you to keep your eyes focused on

hope and it sounds like you've placed your hope in God, from Whom cometh

our help!

It helped me to realize that the immune system is very complex -- sorta

like a jigsaw puzzle. It's a puzzle that the doctors need to figure

out. They will continue to look at all the puzzle pieces until they

figure out how best to treat Caden. So, your prayers for the doctors

will be most valuable as you pray for their wisdom to sort it all out.

If the above questions about your doctor bother you and you need to

decide where to go for better information. I suggest that you call the

Immunne Deficiency Foundation and ask them where to find an immunologist

with special training for treating PIDs. That number is 1-800-296-4433.

But, since your doctors know the difference between B and t-cells, you

may be dealing with someone with some expertise already. In that case

-- pray for them and ask God for the patience to see this diagnosis

through until Truth is discovered.

May God bless you and give you comfort in the meantime. Waiting is the

hardest part!!!!!

In His service,

Dale

[Guest guest]

Dale,

your first question you asked me about the doctor is she is working to help

caden? At first i didnt know, but after today, i feel yes. She told me today,

and to answer another one of your questions that if she cant figure it out she

will send me to someone who will. I also told her i wanted to get a second

opinion which i had already made the appointment for Dr. Rebekkah buckley, in

august. and she said that was a good idea.Her practice isnt limited to

allergies, but i havent heard of too many other immune difficient children that

she is treating. I feel comfortable in going to dr. buckley because i feel she

is more trained in the field then the doctor i am seeing here. One thing the

doctor did say to me today that i have heard alot of other doctors on here that

people have seen say is that he looks too healthy to be so sick. And that his

blood doesnt match his simptoms and stuff like that. In a way i felt that she

was saying she misdiagnosed him and she doesnt know what is going on

with him. She did say his t cells were not working right and which that could

be because at the time he had the blood work done that he was sick? is that

true? have you heard of that? I feel like i have accepted all this and now that

i have accepted it they are taking back everything they have said? And then that

is where my faith has to come in, i have to believe the reason why things are

looking different is because God is healing him, but that is hard for me to, i

just recently got back in church and rededicated my life, so when it comes to

spiritual things sometimes they are hard for me to grasp, i want God to heal him

dont get me wrong but it is just hard for me to grab hold of. Caden is very

special to me and i just want to figure out why he isnt normal? But all this

confusing stuff just frustrates me that much more?

i do have another question? with the t cell she told me that the only things

they could do was this shot, and a bone marrow transplant, but she said he

wouldnt be able to get one of those because he doesnt look sick enough? I dont

understand. do they wait until a child is on there death bed before they say

that they are sick enough to have a bone marrow transplant or what? Because to

me if that is what my son has he is sick enough to me to get it. Since he was

born he has been in the hospital more then i could ever think of in my lifetime.

He has had pneumonia more then i have had colds in my lifetime. I feel so he can

see how it feels to feel good we should help these kids when they are young.

Cause he really doesnt know what it is like to feel good. He has just adapted to

feeling bad and makes the best out of it.

I am so sorry to compile all of this on you, but you seem very knowledgable and

you really seem easy to talk to.

thank you so much,

brandee

Dale Weatherford <dale@...> wrote:

>

>

from Dale, Mom to Katy, CVID, age 19

Brandee, I'm sorry things look so confusing right now. Actually at 4,

it's hard to know what all might be changing and happening to Caden.

Maybe he's had a immune deficiency that he's in the process of

outgrowing. I want to assure you that it sometimes takes a couple of

years to get it all sorted out. If you get to an immunologist who knows

about PIDS it can sometimes shorten the wait -- but even then, they want

to test and re-test everything. Because this is such a rare condition,

many of the labs are not standardized, so tests come back funny

sometime. I've been gone most of the summer and haven't kept track of

all our new people, so I'm sorry if I'm repeating yourself. But, there

are some basic questions I want you to answer for yourself. Number 1

- do you feel that this doctor is seeking to help Caden? Do you feel

comfortable talking to him/her and asking questions? Is this doctor a

specialist in PIDs or is his/her practice limited to allergy patients?

Do you feel comfortable that this doctor will seek outside help if

he/she does not know the answers? These are all important questions

because you need to be comfortable with Caden's care. Secondly, you

need to take a deep breath and remind yourself that what is important is

to find out the Truth. God's Word tells us that the Truth will set you

free. No matter how hard that Truth is -- it's better to know the Truth

than to " not know' " . With PID it is absolutely vital that they

determine exactly what is wrong with Caden before they begin treatment.

If it's t-cells, then your doctor is correct, IgG replacement won't

help a t-cell problem. It may take a few more months of vaccinations,

testing of titers and research before your doctors can definitively give

you answers. And then, don't ever lose hope -- because there's always

the possibility that God will intervene and heal. We've had several

families on this list whose children have " outgrown " the deficiency.

So, don't ever give up. Caden needs you to keep your eyes focused on

hope and it sounds like you've placed your hope in God, from Whom cometh

our help!

It helped me to realize that the immune system is very complex -- sorta

like a jigsaw puzzle. It's a puzzle that the doctors need to figure

out. They will continue to look at all the puzzle pieces until they

figure out how best to treat Caden. So, your prayers for the doctors

will be most valuable as you pray for their wisdom to sort it all out.

If the above questions about your doctor bother you and you need to

decide where to go for better information. I suggest that you call the

Immunne Deficiency Foundation and ask them where to find an immunologist

with special training for treating PIDs. That number is 1-800-296-4433.

But, since your doctors know the difference between B and t-cells, you

may be dealing with someone with some expertise already. In that case

-- pray for them and ask God for the patience to see this diagnosis

through until Truth is discovered.

May God bless you and give you comfort in the meantime. Waiting is the

hardest part!!!!!

In His service,

Dale

[Guest guest]

Dale,

your first question you asked me about the doctor is she is working to help

caden? At first i didnt know, but after today, i feel yes. She told me today,

and to answer another one of your questions that if she cant figure it out she

will send me to someone who will. I also told her i wanted to get a second

opinion which i had already made the appointment for Dr. Rebekkah buckley, in

august. and she said that was a good idea.Her practice isnt limited to

allergies, but i havent heard of too many other immune difficient children that

she is treating. I feel comfortable in going to dr. buckley because i feel she

is more trained in the field then the doctor i am seeing here. One thing the

doctor did say to me today that i have heard alot of other doctors on here that

people have seen say is that he looks too healthy to be so sick. And that his

blood doesnt match his simptoms and stuff like that. In a way i felt that she

was saying she misdiagnosed him and she doesnt know what is going on

with him. She did say his t cells were not working right and which that could

be because at the time he had the blood work done that he was sick? is that

true? have you heard of that? I feel like i have accepted all this and now that

i have accepted it they are taking back everything they have said? And then that

is where my faith has to come in, i have to believe the reason why things are

looking different is because God is healing him, but that is hard for me to, i

just recently got back in church and rededicated my life, so when it comes to

spiritual things sometimes they are hard for me to grasp, i want God to heal him

dont get me wrong but it is just hard for me to grab hold of. Caden is very

special to me and i just want to figure out why he isnt normal? But all this

confusing stuff just frustrates me that much more?

i do have another question? with the t cell she told me that the only things

they could do was this shot, and a bone marrow transplant, but she said he

wouldnt be able to get one of those because he doesnt look sick enough? I dont

understand. do they wait until a child is on there death bed before they say

that they are sick enough to have a bone marrow transplant or what? Because to

me if that is what my son has he is sick enough to me to get it. Since he was

born he has been in the hospital more then i could ever think of in my lifetime.

He has had pneumonia more then i have had colds in my lifetime. I feel so he can

see how it feels to feel good we should help these kids when they are young.

Cause he really doesnt know what it is like to feel good. He has just adapted to

feeling bad and makes the best out of it.

I am so sorry to compile all of this on you, but you seem very knowledgable and

you really seem easy to talk to.

thank you so much,

brandee

Dale Weatherford <dale@...> wrote:

>

>

from Dale, Mom to Katy, CVID, age 19

Brandee, I'm sorry things look so confusing right now. Actually at 4,

it's hard to know what all might be changing and happening to Caden.

Maybe he's had a immune deficiency that he's in the process of

outgrowing. I want to assure you that it sometimes takes a couple of

years to get it all sorted out. If you get to an immunologist who knows

about PIDS it can sometimes shorten the wait -- but even then, they want

to test and re-test everything. Because this is such a rare condition,

many of the labs are not standardized, so tests come back funny

sometime. I've been gone most of the summer and haven't kept track of

all our new people, so I'm sorry if I'm repeating yourself. But, there

are some basic questions I want you to answer for yourself. Number 1

- do you feel that this doctor is seeking to help Caden? Do you feel

comfortable talking to him/her and asking questions? Is this doctor a

specialist in PIDs or is his/her practice limited to allergy patients?

Do you feel comfortable that this doctor will seek outside help if

he/she does not know the answers? These are all important questions

because you need to be comfortable with Caden's care. Secondly, you

need to take a deep breath and remind yourself that what is important is

to find out the Truth. God's Word tells us that the Truth will set you

free. No matter how hard that Truth is -- it's better to know the Truth

than to " not know' " . With PID it is absolutely vital that they

determine exactly what is wrong with Caden before they begin treatment.

If it's t-cells, then your doctor is correct, IgG replacement won't

help a t-cell problem. It may take a few more months of vaccinations,

testing of titers and research before your doctors can definitively give

you answers. And then, don't ever lose hope -- because there's always

the possibility that God will intervene and heal. We've had several

families on this list whose children have " outgrown " the deficiency.

So, don't ever give up. Caden needs you to keep your eyes focused on

hope and it sounds like you've placed your hope in God, from Whom cometh

our help!

It helped me to realize that the immune system is very complex -- sorta

like a jigsaw puzzle. It's a puzzle that the doctors need to figure

out. They will continue to look at all the puzzle pieces until they

figure out how best to treat Caden. So, your prayers for the doctors

will be most valuable as you pray for their wisdom to sort it all out.

If the above questions about your doctor bother you and you need to

decide where to go for better information. I suggest that you call the

Immunne Deficiency Foundation and ask them where to find an immunologist

with special training for treating PIDs. That number is 1-800-296-4433.

But, since your doctors know the difference between B and t-cells, you

may be dealing with someone with some expertise already. In that case

-- pray for them and ask God for the patience to see this diagnosis

through until Truth is discovered.

May God bless you and give you comfort in the meantime. Waiting is the

hardest part!!!!!

In His service,

Dale

[Guest guest]

from Dale, Mom to Katy, CVID, age 19

Brandee, I don't know very much about T-cell's because my daughter's

problem are all in the b-cells -- and while it's all part of the immune

system -- they are totally different. But this I can assure you, Dr.

Buckley is one of the most respected researchers for t-cell

problems in the nation. That's her specialty and I'm glad that God has

opened that door for you to get to see her or her staff. She's actually

the president of the Medical Advisory Board for the Immune Deficiency

Foundation. August is not that far off -- just around the corner in

fact. God heals in many different ways -- sometimes through miracles,

sometimes through physicians, sometimes in just holding our hand while

we go through tough stuff and helping us to keep our eyes on Him as our

Sustainer and the One Who holds our head up. Hopefully, you'll get

some answers soon.

In His service,

Dale

[Guest guest]

In a message dated 7/25/2003 11:36:17 PM Central Standard Time,

healthymomof2@... writes:

> a bone marrow transplant, but she said he wouldnt be able to get one of

> those because he doesnt look sick enough?

Brandee:

Mind if I jump in? A bone marrow transplant just isn't safe if the person has

" too much " of their own immune system. Since your son has *some* functioning

immune system, it's possible his system might attack the bone marrow

transplant and that would spell disaster.

When they do a transplant, it's for people with very little of their own

system, and even then they treat them with chemo drugs (I think that's how it

goes) to try to destroy the rest of it. Even then it can be dangerous. Not an

easy

" cure " !

>>>>>>>>>>And that his blood doesnt match his simptoms and stuff like that.<<

<<<<<<<

I think I would interpret that as maybe there is something going on she

hasn't uncovered yet. There are sooo many aspects to the immune system and you

can't test them all at once, so you start with the obvious and work forward

based

on what you find in the preliminaries. It does take time. and Time. AND TIME.

Sigh. It really does try your patience, the waiting. And just when you think

you've figured it out, the diagnosis changes. I found that so stressful.

had some partial t-cell deficiencies at two but outgrew them... it is

my hope that that blessing befalls Caden as well.

>>>>>>>>>>>>>he looks too healthy to be so sick<<<<<<<<<

was in the 90th percentile for height and weight and looked like a

Gerber baby. But she nearly died twice from deadly infections. Sometimes PID

children fail to thrive, sometimes they don't. was also reacting to a

dairy

intolerance for the whole first year of her life, but we didn't figure it out

until we tried to switch her from breast to cow's milk at 13 months old. Still

she thrived. She was sick all the time, but she looked good!

It's a long, aggravating road to figure this all out. You're doing the right

thing by learning and being such a good advocate for your son's health. Keep

the faith, cry in private, and do lots of fun things with your son to keep his

spirits up! It will get easier, you will adjust. Hard to believe that now, but

I know you will. You're doing great!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

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

[Guest guest]

In a message dated 7/25/2003 11:36:17 PM Central Standard Time,

healthymomof2@... writes:

> a bone marrow transplant, but she said he wouldnt be able to get one of

> those because he doesnt look sick enough?

Brandee:

Mind if I jump in? A bone marrow transplant just isn't safe if the person has

" too much " of their own immune system. Since your son has *some* functioning

immune system, it's possible his system might attack the bone marrow

transplant and that would spell disaster.

When they do a transplant, it's for people with very little of their own

system, and even then they treat them with chemo drugs (I think that's how it

goes) to try to destroy the rest of it. Even then it can be dangerous. Not an

easy

" cure " !

>>>>>>>>>>And that his blood doesnt match his simptoms and stuff like that.<<

<<<<<<<

I think I would interpret that as maybe there is something going on she

hasn't uncovered yet. There are sooo many aspects to the immune system and you

can't test them all at once, so you start with the obvious and work forward

based

on what you find in the preliminaries. It does take time. and Time. AND TIME.

Sigh. It really does try your patience, the waiting. And just when you think

you've figured it out, the diagnosis changes. I found that so stressful.

had some partial t-cell deficiencies at two but outgrew them... it is

my hope that that blessing befalls Caden as well.

>>>>>>>>>>>>>he looks too healthy to be so sick<<<<<<<<<

was in the 90th percentile for height and weight and looked like a

Gerber baby. But she nearly died twice from deadly infections. Sometimes PID

children fail to thrive, sometimes they don't. was also reacting to a

dairy

intolerance for the whole first year of her life, but we didn't figure it out

until we tried to switch her from breast to cow's milk at 13 months old. Still

she thrived. She was sick all the time, but she looked good!

It's a long, aggravating road to figure this all out. You're doing the right

thing by learning and being such a good advocate for your son's health. Keep

the faith, cry in private, and do lots of fun things with your son to keep his

spirits up! It will get easier, you will adjust. Hard to believe that now, but

I know you will. You're doing great!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

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

[Guest guest]

Hi ,

here, we did something similar for 's first 2 years of public

school. We generated a letter with the school nurse basically explaining what

you did, although we didn't use any names, just a child in your child's class.(

By now most of the parents know what is going on.) The response was heartening,

parents were very conscientious about calling the nurse if their child became

sick, keeping them home etc. Of course not all parents did this, but a good

number did, I received a lot of calls from the nurse on this infection, this one

has a fever etc. but there are a lot of parents out there who still send their

kids to school when they shouldn't. I haven't had them send home a note this

year, the teacher knows to try and keep her apart from anyone that is blatantly

sick, she has already missed 2 days for illness our of 7 days of school. Good

luck, I gave IDF info to the teacher, nurse and principal so they had some

knowledge of PID's.

Mom to , IgA def, asthma, gerd

[Guest guest]

Dear Sue,

I'm at it now hon!

Love you, tricia

& & & & & & & & & & & & & &

-- help

hi friends, it's sue #2 and I can finally get through to you, but

it's through work. I have been booted off of for some

reason. i need help...i need tricia or pattymelt to email me the

pictures of the severe bruising that i sent them last night. can

someone email tricia for me. i cannot find her email address here at

work. i just don't have any stills information here at work on the

work computer. i am having a blood problem with severe bruising and

emailed the pictures to patty and tricia last night. now i cannot

find them, and my doc wants me to email them to him right away. so

if tricia and patty can help me out..this would be great. thank you

so much...i love you all and hope to catch up very, very soon as soon

as signs me on again. the email address here at work is

surplusunltd@...

love, sue #2

[Guest guest]

Please let me know if you got these pictures...okay?

Love you!

tricia

2r1@...

-- help

hi friends, it's sue #2 and I can finally get through to you, but

it's through work. I have been booted off of for some

reason. i need help...i need tricia or pattymelt to email me the

pictures of the severe bruising that i sent them last night. can

someone email tricia for me. i cannot find her email address here at

work. i just don't have any stills information here at work on the

work computer. i am having a blood problem with severe bruising and

emailed the pictures to patty and tricia last night. now i cannot

find them, and my doc wants me to email them to him right away. so

if tricia and patty can help me out..this would be great. thank you

so much...i love you all and hope to catch up very, very soon as soon

as signs me on again. the email address here at work is

surplusunltd@...

love, sue #2

[Guest guest]

I just forwarded the file (picture) also . Much luck for your doctor

to get you in now. Melt

----- Original Message -----

From: " TLC " <2r1@...>

> Dear Sue,

>

> I'm at it now hon!

>

> Love you, tricia

[Guest guest]

> If anyone here has any recipes they would like to share with me

Hi Dessa,

Start with the Toiletries Library

(http://www.luxurylane.com/thelibrary/index.htm). Lots of different recipes

there.

Carol

Dragon's Pearls

Herb Shoppe: http://herbshoppe.dragonspearls.com

Computer Consulting: http://computers.dragonspearls.com

[Guest guest]

what manuals do you use in the NHS for the Paramedic course apart from the

Blue book?

Help

>HI GUYS,

> CURRENTLY EMPLOYED AS AN EMT BY MY LOCAL NHS AMBULANCE

SERVICE HERE IN THE UK. SHOULD BE ON MY PARAMEDIC COURSE APRIL 2004. I AM

VERY INTERESTED IN WORKING ABROAD, ESPECIALLY USA OR CANADA.

>ANY ADVICE YOU GUYS COULD OFFER ME, SUCH AS EQUIVALENCY OF QUALIFICATIONS,

WOULD BE GREATLY APPRECIATED.

>REGARDS.

>DARREN WILKINSON

>

>

>

[Guest guest]

Hello ne:

First of all a big welcome to the family and it is very nice to have you here. I understand your predicament believe me I have been there for the past three years. The ICD's are programmed to intervene if you have continuous tachy for (most of the people) I think 10 seconds. In the mean time if you have bigemini's or tri-gemini which are I think a missed heart beat every two or three beats, the machine wont even intervene but you will be very uncomfortable sometimes out of breath and sometimes will be in fear if this episode will end up as a VT and get a shock or something like that. At least I feel that way and when I get them I usually start coughing (it helps me but not for everyone). But in the mean time Docs say to me all the time that everyone get skip beats but with us it is more regular and so they adjust the ICD's for us so that we don't get shocked every time we get a bi or trigemini. Every time I get mine read the doctor have said nothing except for 1 run of VT for 5 beats or 6 beats and that was non-sustained. When I hear this I go crazy because I know I had at least 5 or 6 different episodes where I had a tachy and was petrified with it. My doc keeps saying take a chill pill you won't get shocked that easily. I tell him that he has no idea how I feel. So the only thing I can tell you is I know what you are going thru and try to take it easy when you have it because anxiety only adds to it and for that (although very rarely) I take clonazepam (an anti-anxiety med) and feel like a million bucks, Good Luck. TURK

help

New member here, looking for some input. I've been having some tachycardia today, and my electrophysiologist had me transmit from my ICD to his office so he could take a look at what was going on. The thing is, what showed up was....NOTHING. Their office gave me the impression that if nothing showed up, then nothing happened, without question. I've been dealing with this for 11 years, so I'm not new at this, and I know what it feels like when my heart isn't doing what it should. Anyone else have an ICD miss episodes of tachycardia, or know of why it might? I called Medtronic, and they said to follow the advice of my primary physician, which is if I feel it, go to the ER. They've been dealing with me for the whole 11 years, so they know when I say something is not right, then there is something not right. I'm going to be looking for a new EP, since his attitude seems to be if I'm not dead, then I'm doing fine.Please visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

Suzanne,

Is your

pulse rate higher than the rate that the ICD is set to correct at? If that’s the case, then there must be

a problem with the ICD that the EP must resolve.

If your

pulse is high, and that makes you feel nervous, but it isn’t high enough to

trigger the ICD, then you must have your cardiologist explain what is occurring,

and if necessary change the ICD setting.

If your pulse is high, but not considered to be in the dangerous zone,

then your cardiologist should explain that to you, so you won’t have anxiety

over it.

Norm

-----Original

Message-----

From: susanne_mischelle

[mailto:susanne_mischelle@...]

Sent: Thursday, January 08, 2004

3:20 PM

Subject: help

New member here,

looking for some input. I've been having some

tachycardia

today, and my electrophysiologist had me transmit from my

ICD to his

office so he could take a look at what was going on. The

thing is, what

showed up was....NOTHING. Their office gave me the

impression that

if nothing showed up, then nothing happened, without

question.

I've been dealing with this for 11 years, so I'm not new

at this, and I

know what it feels like when my heart isn't doing what

it should.

Anyone else have an ICD miss episodes of tachycardia, or

know of why it

might? I called Medtronic, and they said to follow

the advice of my

primary physician, which is if I feel it, go to the

ER.

They've been dealing with me for the whole 11 years, so they

know when I say

something is not right, then there is something not

right. I'm

going to be looking for a new EP, since his attitude

seems to be if

I'm not dead, then I'm doing fine.

[Guest guest]

I know in my case I have episodes of fast-but-normal heartrate that

show up on my readout as just that - too fast, but not out of sync.

I only have a ventricular lead and the device tech said that without

an atrial lead, they can't be sure I'm not having atrial arrhythmia

and since I'm already on blood thinners, they aren't concerned about

it.

Bridget

> New member here, looking for some input. I've been having some

> tachycardia today, and my electrophysiologist had me transmit from

my

> ICD to his office so he could take a look at what was going on.

The

> thing is, what showed up was....NOTHING. Their office gave me the

> impression that if nothing showed up, then nothing happened,

without

> question. I've been dealing with this for 11 years, so I'm not new

> at this, and I know what it feels like when my heart isn't doing

what

> it should. Anyone else have an ICD miss episodes of tachycardia,

or

> know of why it might? I called Medtronic, and they said to follow

> the advice of my primary physician, which is if I feel it, go to

the

> ER. They've been dealing with me for the whole 11 years, so they

> know when I say something is not right, then there is something not

> right. I'm going to be looking for a new EP, since his attitude

> seems to be if I'm not dead, then I'm doing fine.

[Guest guest]

>From: "susanne_mischelle"

>Reply- > >Subject: help >Date: Thu, 08 Jan 2004 22:20:02 -0000 >MIME-Version: 1.0 >X-Originating-IP: 24.58.110.190 >X-Sender: susanne_mischelle@... >Received: from n20.grp.scd. ([66.218.66.76]) by mc5-f4.hotmail.com with Microsoft SMTPSVC(5.0.2195.6824); Thu, 8 Jan 2004 14:21:47 -0800 >Received: from [66.218.66.94] by n20.grp.scd. with NNFMP; 08 Jan 2004 22:20:54 -0000 >Received: (qmail 14777 invoked from network); 8 Jan 2004 22:20:04 -0000 >Received: from unknown (66.218.66.166) by m1.grp.scd. with QMQP; 8 Jan 2004 22:20:04 -0000 >Received: from unknown (HELO n36.grp.scd.) (66.218.66.104) by mta5.grp.scd. with SMTP; 8 Jan 2004 22:20:04 -0000 >Received: from [66.218.67.177] by n36.grp.scd. with NNFMP; 08 Jan 2004 22:20:03 -0000 >X-Message-Info: JGTYoYF78jHD72vniBuLhUrM1mDMIWwF >X-eGroups-Return: sentto-1018255-9875-1073600405-her_timid_heart=hotmail.com@... >X-Apparently- >Message-ID:

>User-Agent: eGroups-EW/0.82 >X-Mailer: Message Poster >X-eGroups-Remote-IP: 66.218.66.104 >X--Profile: susanne_mischelle >Mailing-List: list ; contact -owner >Delivered-mailing list >Precedence: bulk >List-Unsubscribe:

>Return-Path: sentto-1018255-9875-1073600405-her_timid_heart=hotmail.com@... >X-OriginalArrivalTime: 08 Jan 2004 22:21:47.0892 (UTC) FILETIME=[CE47AB40:01C3D635] > >New member here, looking for some input. I've been having some >tachycardia today, and my electrophysiologist had me transmit from my >ICD to his office so he could take a look at what was going on. The >thing is, what showed up was....NOTHING. Their office gave me the >impression that if nothing showed up, then nothing happened, without >question. I've been dealing with this for 11 years, so I'm not new >at this, and I know what it feels like when my heart isn't doing what >it should. Anyone else have an ICD miss episodes of tachycardia, or >know of why it might? I called Medtronic, and they said to follow >the advice of my primary physician, which is if I feel it, go to the >ER. They've been dealing with me for the whole 11 years, so they >know when I say something is not right, then there is something not >right. I'm going to be looking for a new EP, since his attitude >seems to be if I'm not dead, then I'm doing fine. > gosh you are luckier than I seem to be, they figure if i'm not dead yet then they need to work harder at ignoring I exist There are now three new levels of MSN Hotmail Extra Storage! Learn more.

[Guest guest]

ne,

Boy do I relate to this so much. They tell me these must be SVT's which are "harmless". Well I have to say that no they may not kill me but they sure do me in. They also seem to go into more but never really record as bad as they are. I get tired of going into the hospital and being questioned why are you here. Then just waiting around for it to get worse before they admit me and watch me. I am finding that I stay home now longer and just try to be still. My problem is.....why can't they stop this stuff in the first place?

New member here, looking for some input. I've been having some tachycardia today, and my electrophysiologist had me transmit from my ICD to his office so he could take a look at what was going on. The thing is, what showed up was....NOTHING. Their office gave me the impression that if nothing showed up, then nothing happened, without question. I've been dealing with this for 11 years, so I'm not new at this, and I know what it feels like when my heart isn't doing what it should. Anyone else have an ICD miss episodes of tachycardia, or know of why it might? I called Medtronic, and they said to follow the advice of my primary physician, which is if I feel it, go to the ER. They've been dealing with me for the whole 11 years, so they know when I say something is not right, then there is something not right. I'm going to be looking for a new EP, since his attitude seems to be if I'm not dead, then I'm doing fine.

M in CAScrap Mosaicist

[Guest guest]

Hi there,

It might be helpful to find a professional in your area who specializes in behavior analysis. You don't need me to tell you that it would be best to get these behaviors under control while your son is still young. As someone else suggested, teaching language whether in vocal form, sign or other augmentative communication is definitely the right place to start. What services is your child receiving? The good news is, he has plenty of potential reinforcers (you said he loves Playstation, TV, Mc's etc.), now you just need someone to guide you in how to make those items contingent on appropriate behavior. A good place to look for a behavior analyst is www.bacb.com, they have a list of board certified professionals in your area. Also, if you let me know where you are located, I might be able to put you in touch with someone. Good luck.

-Jannine

[Guest guest]

Hi Maggie,

My son is 17 and he is taking 1.5 of risperdal which he started when he

turned puberty. I think the risperdal maybe causing your son to wet the

bed. ( my son did at first) I am not a doctor but it seems to me the

dose of 1mg 3 times a day seems high for someone so young. You might want to

talk to your doctor about what you are seeing.

I would really fight them on putting your son in an emotionally disturbed

class. Your son has autism not an emotional disorder and there will be

behavioral problems so they should provide the needed support for him and

teachers to be successful. In fact he probably needs to get out of the

class he is put in and put with kids who do not have behaviors he can

imitate. I would remind them of the law of least restricted environment and

request that to do this they need to supply outside help - behavioral

management, inclusion expert etc. This was a problem my son had when he

was young. He is a great imitator! We had inclusion for awhile and it was

really great for my son with the behavioral issues.

I would check into finding a good advocate out there and start learning

about the law. When I first put my son in school I was so naive, but you

sure wise up fast! They will treat you like a rug if you let them. Each

state has parent information centers for parents with kids with disabilities

where you can get info and such. Here is a site that tells

http://www.taalliance.org/centers/

Hang in there! It is one roller coaster ride.

sincerely,

Sandy in New Mexico

[Guest guest]

For the pen, you could try hairspray, which usually gets rid of

ballpoint pen type inks. I have also read that toothpaste, wiped on,

let set 30 minutes, then wipe off will remove ink marks (but nothing

worked on my cream colored leather sofa!!!) For crayon, you can try

baby oil and a soft cloth (followed by soap/water to get rid of the

oil), or a damp cloth dipped in baking soda. Good luck! I am currently

working on the green marker that is all over the front of my husband's

new baseball cap!

, mom to (8), (6 DS), and (4)

Leis wrote:

>hey guys

>

>how do i get both crayon and biro/pen off wallpaper???

>

>

>TIA

>

>

>

[Guest guest]

I don't know about pen, but WD-40 takes crayon off anything. (Check out

crayola.com to find out how to get any of their products off any

surface/fabric). If you don't have WD-40 down under, it is a spray

lubricant that you use on metal to stop squeaking, so I'm sure you have a

like product down there.

help

> hey guys

>

> how do i get both crayon and biro/pen off wallpaper???

>

>

> TIA

>

> --

> Aussie Leis- mum to BJ - 6- ds, Natasha 2 and 5 months

>

>

>

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

[Guest guest]

Maggie, I would fight the school over this placement. I have one child in an

ED class and it is in NO WAY appropriate for a child with autism anymore

than Evan's placement would be appropriate for . Your son needs a one

on one aide not a classroom shuffle. Good luck with the battle you are

going to have. I am homeschooling because I could not get what he

needed without constantly fighting people that would rather see him in a

group home out of county than give him one he needs. That option is not

right for everyone though. I could not give Evan anywhere what he needs.

BETTY ANN-62 yo, possibly undx'd Bipolar

grandma and guardian to

ANDREW - 12 yo-- Bipolar/ADHD, Homeschooled

EVAN - 10 yo-- nonverbal autism

DAVID 7 yo Bipolar/ADHD

and mother to ANDREA -33 yo, their mom -Bipolar/ADHD

wife to BOB - 72 yo, a very tired grandpa

[Guest guest]

I've heard that new product Mr. Clean's Magic Eraser is really good for

stuff like that, but I haven't had to try it out yet.

help

> hey guys

>

> how do i get both crayon and biro/pen off wallpaper???

>

>

> TIA

>

> --

> Aussie Leis- mum to BJ - 6- ds, Natasha 2 and 5 months

>

>

>

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

[Guest guest]

THANKS guys

The hairspray got some ink off the wallpaper- will try another brand

hairspray for rest- just to see if that works

WD40 worked a CHARm!! Man it was incrediblke- spray on, wipe crayon off

I will look for that Mr Clean spray- bu we prob cant get it here in Oz -

I ownde rif those fabric spot removers would work????

Domestos- or I use the name brand- gets red smiley stamps off wallpaper-

needs a tad elbow grease-but thought I should share that tidbit because

everyone shared with me

Maytbe I Should write a stain remover book

Thanks again guys

Easter bunny comes tonite.......chocolate high day Full of upset

because chocolate will eventually run out

Have agreat one guys- you are all in my prayers

Leis

wrote:

>I've heard that new product Mr. Clean's Magic Eraser is really good for

>stuff like that, but I haven't had to try it out yet.

>

>