New member introduction

[Guest guest]

Hi Jody

Welcome to the group. You sound like a very strong lady, I admire that. Back to work already...Wow!!

I hear you on the sleeping part, I hated having to sleep on my back also. What helped me was I put a pillow under the right side under my breast area. It enabled me to sleep on my right side and relieve any pressure that I would have from the incision area. I hope that can help you.

It was longer for me to drive, but when I did it wasn't a big bother. It's been 8 1/2 months since my implant and I have no problems at all with driving. I feel pretty good and my last stress test was very good. I am a 52 year old women and living in NJ. (thought I would give you some info on me )

I wish you the best of luck and you can contact me at any time.

Sincerely,

Toni

[Guest guest]

Hi, Jody, and welcome to the Zaplist. You'll find a lot of really nice folks

here with experience in just about anything related to an ICD.

Time is what will make everything better. First, the ICD implant site needs to

heal. They did cut into your body, after all, and it'll stay sore and sensitive

for a while. Until then, things like sleeping, wearing seat belts, and some

activities of daily living will be uncomfortable. You just do whatever you can

to tolerate it. I think it took a year before I slept on my side and then only

on the opposite side from the ICD. Everyone is different and heals at different

rates.

Thank goodness for the lifesaver in your chest. You can look forward to many

more happy years.

Mike

New Member Introduction

>

>Hi Everyone:

>My name is Jody and I am a 50 year old female from the Worcester, MA

>area, and I just had my defibrillator implanted two weeks ago

>today.

>

>I am rather new to all of this and have lived with Cardiomyopathy

>for the past 8 years on a minimal dose of Lisinopril. I started

>having problems with palpitations and a rapid heartbeat several

>months ago and after seeing my Cardiologist he recommended that I

>consider having a defibrillator put in to prevent a sudden death

>episode.

>

>After introducing several new meds (Water Pill, Beta Blocker and

>Potassium) and adjusting doseages the doctors decided to go ahead

>with the proceedure on 8/24/06.

>

>I was home for a week and after a few days I felt better and wanted

>to get back to work. Being at home there are so many things that I

>wanted to be doing, such as yard work, but until I'm off

>restrictions, I'm actually safer in the office sitting behind a desk

>doing paperwork and answering a phone. Yes I do come home tired,

>but, as I continue to heal from my implant, I hope I can get back to

>life as normal for me.

>

>The two issues I'm dealing with are finding a comfortable sleeping

>position other than on my back, and getting my drivers side seatbelt

>problem resolved. I ordered a sheepskin seatbelt cover hoping it

>will provide more padding than a towel wrapped around the seatbelt

>does. Right now even with a towel the pressure over my ICD is a bit

>uncomfortable. Maybe in time that will improve?

>

>I go back for my first check up on 9/11 and then to the Pacemaker

>Clinic on 9/28. I guess I'll get used to the routine soon enough,

>but I will say that I'm not looking forward to getting zapped for

>the first time either.

>

>I look forward to learning and sharing with all of you!

>Thanks for listening,

>Jody Champlin

>Holden, MA

>

>

>

>

>

>

>

>

>Please visit the Zapper homepage at

>http://www.ZapLife.org

>

[Guest guest]

Hello Jody;Welcome to our family. This place is full of nice people who want to help. If you have any question don't be afraid to ask and if you feel you want to share something let us know because we can learn from you as well. Love TURKmhiranuma@... wrote: Hi, Jody, and welcome to the Zaplist. You'll find a lot of really nice folks here with experience in just about anything related to an ICD. Time is what will make everything better. First, the ICD implant site needs to heal. They did cut into your

body, after all, and it'll stay sore and sensitive for a while. Until then, things like sleeping, wearing seat belts, and some activities of daily living will be uncomfortable. You just do whatever you can to tolerate it. I think it took a year before I slept on my side and then only on the opposite side from the ICD. Everyone is different and heals at different rates. Thank goodness for the lifesaver in your chest. You can look forward to many more happy years. Mike New Member Introduction > >Hi Everyone: >My name is Jody and I am a 50 year old female from the Worcester, MA >area, and I just had my defibrillator implanted two weeks ago

>today. > >I am rather new to all of this and have lived with Cardiomyopathy >for the past 8 years on a minimal dose of Lisinopril. I started >having problems with palpitations and a rapid heartbeat several >months ago and after seeing my Cardiologist he recommended that I >consider having a defibrillator put in to prevent a sudden death >episode. > >After introducing several new meds (Water Pill, Beta Blocker and >Potassium) and adjusting doseages the doctors decided to go ahead >with the proceedure on 8/24/06. > >I was home for a week and after a few days I felt better and wanted >to get back to work. Being at home there are so many things that I >wanted to be doing, such as yard work, but until I'm off >restrictions, I'm actually safer in the office sitting behind a desk >doing paperwork and answering a phone. Yes I do come

home tired, >but, as I continue to heal from my implant, I hope I can get back to >life as normal for me. > >The two issues I'm dealing with are finding a comfortable sleeping >position other than on my back, and getting my drivers side seatbelt >problem resolved. I ordered a sheepskin seatbelt cover hoping it >will provide more padding than a towel wrapped around the seatbelt >does. Right now even with a towel the pressure over my ICD is a bit >uncomfortable. Maybe in time that will improve? > >I go back for my first check up on 9/11 and then to the Pacemaker >Clinic on 9/28. I guess I'll get used to the routine soon enough, >but I will say that I'm not looking forward to getting zapped for >the first time either. > >I look forward to learning and sharing with all of you! >Thanks for listening, >Jody Champlin >Holden, MA

> > > > > > > > >Please visit the Zapper homepage at >http://www.ZapLife.org >

[Guest guest]

Hi Jody, So glad you found us so soon after your implant. This group is the very best for support, advice, info, and good fun. I have been a member since 2002 when I got my gizmo after a sudden cardiac death episode. So welcome aboard. We are always here for you. Becca in Florida (homesick for Carolina)TURK <goturk1@...> wrote: Hello

Jody;Welcome to our family. This place is full of nice people who want to help. If you have any question don't be afraid to ask and if you feel you want to share something let us know because we can learn from you as well. Love TURKmhiranumaearthlink (DOT) net wrote: Hi, Jody, and welcome to the Zaplist. You'll find a lot of really nice folks here with experience in just about anything related to an ICD. Time is what will make everything better. First, the ICD implant site needs to heal. They did cut into your body, after all, and it'll stay sore and sensitive for a while. Until then, things like sleeping, wearing seat belts, and some activities of daily living will be uncomfortable. You just do whatever you can to tolerate it. I think it took a year before I slept on my side and then only on the opposite

side from the ICD. Everyone is different and heals at different rates. Thank goodness for the lifesaver in your chest. You can look forward to many more happy years.Mike New Member Introduction>>Hi Everyone:>My name is Jody and I am a 50 year old female from the Worcester, MA >area, and I just had my defibrillator implanted two weeks ago >today. >>I am rather new to all of this and have lived with Cardiomyopathy >for the past 8 years on a minimal dose of Lisinopril. I started >having problems with palpitations and a rapid heartbeat several >months ago and after seeing my Cardiologist he recommended that I

>consider having a defibrillator put in to prevent a sudden death >episode. >>After introducing several new meds (Water Pill, Beta Blocker and >Potassium) and adjusting doseages the doctors decided to go ahead >with the proceedure on 8/24/06. >>I was home for a week and after a few days I felt better and wanted >to get back to work. Being at home there are so many things that I >wanted to be doing, such as yard work, but until I'm off >restrictions, I'm actually safer in the office sitting behind a desk >doing paperwork and answering a phone. Yes I do come home tired, >but, as I continue to heal from my implant, I hope I can get back to >life as normal for me. >>The two issues I'm dealing with are finding a comfortable sleeping >position other than on my back, and getting my drivers side seatbelt >problem resolved. I ordered a sheepskin seatbelt

cover hoping it >will provide more padding than a towel wrapped around the seatbelt >does. Right now even with a towel the pressure over my ICD is a bit >uncomfortable. Maybe in time that will improve?>>I go back for my first check up on 9/11 and then to the Pacemaker >Clinic on 9/28. I guess I'll get used to the routine soon enough, >but I will say that I'm not looking forward to getting zapped for >the first time either. >>I look forward to learning and sharing with all of you!>Thanks for listening,>Jody Champlin>Holden, MA>>>>>>>>>Please visit the Zapper homepage at>http://www.ZapLife.org >

[Guest guest]

Welcome to the group. You will find a good amount of family here to answer probably all your questions.

My husband (when he took the car) would place the seatbelt under his arm. But here in CT that don't like that. Best bet is to double check with the Motor Vehicle dept in Worcester if you can do this. As the Worcester dept is so slow it may take several phone calls. Yes I know how they are up there I used to live in Clinton. Moved down to CT when my husband got sick.

I take it you go to UMass? Who is your doctor up there?

As far as sleeping you probably will never get comfortable on your left side. My husband found that if he had a VERY soft pillow he could place it by the unit once it had healed up somewhat and could sleep more comfortable. Some people it does not bother at all.

Best

Gail

New Member Introduction

Hi Everyone:My name is Jody and I am a 50 year old female from the Worcester, MA area, and I just had my defibrillator implanted two weeks ago today. I am rather new to all of this and have lived with Cardiomyopathy for the past 8 years on a minimal dose of Lisinopril. I started having problems with palpitations and a rapid heartbeat several months ago and after seeing my Cardiologist he recommended that I consider having a defibrillator put in to prevent a sudden death episode. After introducing several new meds (Water Pill, Beta Blocker and Potassium) and adjusting doseages the doctors decided to go ahead with the proceedure on 8/24/06. I was home for a week and after a few days I felt better and wanted to get back to work. Being at home there are so many things that I wanted to be doing, such as yard work, but until I'm off restrictions, I'm actually safer in the office sitting behind a desk doing paperwork and answering a phone. Yes I do come home tired, but, as I continue to heal from my implant, I hope I can get back to life as normal for me. The two issues I'm dealing with are finding a comfortable sleeping position other than on my back, and getting my drivers side seatbelt problem resolved. I ordered a sheepskin seatbelt cover hoping it will provide more padding than a towel wrapped around the seatbelt does. Right now even with a towel the pressure over my ICD is a bit uncomfortable. Maybe in time that will improve?I go back for my first check up on 9/11 and then to the Pacemaker Clinic on 9/28. I guess I'll get used to the routine soon enough, but I will say that I'm not looking forward to getting zapped for the first time either. I look forward to learning and sharing with all of you!Thanks for listening,Jody ChamplinHolden, MA

[Guest guest]

Hi Jodi,

Welcome to the Zapper family. Being a part of this group has helped all of us at one time or another. Learning to live with heart health issues and then an AICD gets to all of us at one time or another and it is great to come to this group for support and info.

I am one of those people who can't sleep on my back or tummy. It took close to almost a year to be able to sleep on my left side at all but it can happen. After healing thought within a few months I could tolerate my right side sleeping. I do something a little different that works for me....I sleep with a blanket shoved up under my neck, shoulder and breast in addition to the pillow my head rests on. I found it was firmer than a 2nd pillow and it fits the space better. What this does is lift some of the weight/gravity pull on my heart, muscles and skin. I had a battery replacement a year ago and within weeks was sleeping on both sides again.

As to being afraid....well try not to think about it too much. Most of us have lived the fear and even the natural depression following the incident and implant. If it happens then you will be lucky to be around to talk about it after. I know, easier said than done, right. I have had a few shocks myself and my original reason for implant was because of a Sudden Cardiac Death episode. If I hadn't been in the hospital at the time of that I wouldn't be here.

Keep talking out your fears and concerns here.....we can all understand more than anyone else probably.

in CA

In a message dated 9/8/2006 8:41:52 A.M. Pacific Standard Time, tribarkin@... writes:

The two issues I'm dealing with are finding a comfortable sleeping position other than on my back, and getting my drivers side seatbelt problem resolved. I ordered a sheepskin seatbelt cover hoping it will provide more padding than a towel wrapped around the seatbelt does. Right now even with a towel the pressure over my ICD is a bit uncomfortable. Maybe in time that will improve?

[Guest guest]

Hi Jodi,

Welcome to the Zapper family. Being a part of this group has helped all of us at one time or another. Learning to live with heart health issues and then an AICD gets to all of us at one time or another and it is great to come to this group for support and info.

I am one of those people who can't sleep on my back or tummy. It took close to almost a year to be able to sleep on my left side at all but it can happen. After healing thought within a few months I could tolerate my right side sleeping. I do something a little different that works for me....I sleep with a blanket shoved up under my neck, shoulder and breast in addition to the pillow my head rests on. I found it was firmer than a 2nd pillow and it fits the space better. What this does is lift some of the weight/gravity pull on my heart, muscles and skin. I had a battery replacement a year ago and within weeks was sleeping on both sides again.

As to being afraid....well try not to think about it too much. Most of us have lived the fear and even the natural depression following the incident and implant. If it happens then you will be lucky to be around to talk about it after. I know, easier said than done, right. I have had a few shocks myself and my original reason for implant was because of a Sudden Cardiac Death episode. If I hadn't been in the hospital at the time of that I wouldn't be here.

Keep talking out your fears and concerns here.....we can all understand more than anyone else probably.

in CA

In a message dated 9/8/2006 8:41:52 A.M. Pacific Standard Time, tribarkin@... writes:

The two issues I'm dealing with are finding a comfortable sleeping position other than on my back, and getting my drivers side seatbelt problem resolved. I ordered a sheepskin seatbelt cover hoping it will provide more padding than a towel wrapped around the seatbelt does. Right now even with a towel the pressure over my ICD is a bit uncomfortable. Maybe in time that will improve?

[Guest guest]

Hi Jody,

Welcome to the group. Regarding the seat belt, there is a thing called a seat belt locking clip, for use with child seats. You can probably find one at any auto parts store. Here is a link that explains it: http://www.preventinjury.org/GILockingClips.asp You can temporarily put it on the shoulder harness to keep it from retracting and rubbing your ICD. A large Gem Clip will also work. After a few weeks, your incision heals and you won't have the problem.

Ken

.._,___

[Guest guest]

Welcome back Gail. Nice to hear from you. How are you doing? Take care of yourself. Regards TURKcharade799@... wrote: Welcome to the group. You will find a good amount of family here to answer probably all your questions. My husband (when he took the car) would place the seatbelt under his arm. But here in CT that don't like that. Best bet is to double check with the Motor Vehicle dept in Worcester if you can do this. As the Worcester dept is so slow it may

take several phone calls. Yes I know how they are up there I used to live in Clinton. Moved down to CT when my husband got sick. I take it you go to UMass? Who is your doctor up there? As far as sleeping you probably will never get comfortable on your left side. My husband found that if he had a VERY soft pillow he could place it by the unit once it had healed up somewhat and could sleep more comfortable. Some people it does not bother at all. Best Gail New Member Introduction

Hi Everyone:My name is Jody and I am a 50 year old female from the Worcester, MA area, and I just had my defibrillator implanted two weeks ago today. I am rather new to all of this and have lived with Cardiomyopathy for the past 8 years on a minimal dose of Lisinopril. I started having problems with palpitations and a rapid heartbeat several months ago and after seeing my Cardiologist he recommended that I consider having a defibrillator put in to prevent a sudden death episode. After introducing several new meds (Water Pill, Beta Blocker and Potassium) and adjusting doseages the doctors decided to go ahead with the proceedure on 8/24/06. I was home for a week and after a few days I felt better and wanted to get back to work. Being at home there are so many things that I wanted to

be doing, such as yard work, but until I'm off restrictions, I'm actually safer in the office sitting behind a desk doing paperwork and answering a phone. Yes I do come home tired, but, as I continue to heal from my implant, I hope I can get back to life as normal for me. The two issues I'm dealing with are finding a comfortable sleeping position other than on my back, and getting my drivers side seatbelt problem resolved. I ordered a sheepskin seatbelt cover hoping it will provide more padding than a towel wrapped around the seatbelt does. Right now even with a towel the pressure over my ICD is a bit uncomfortable. Maybe in time that will improve?I go back for my first check up on 9/11 and then to the Pacemaker Clinic on 9/28. I guess I'll get used to the routine soon enough, but I will say that I'm not looking forward to getting zapped for the first time either. I look forward to learning and sharing

with all of you!Thanks for listening,Jody ChamplinHolden, MA

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Hi Jody,

I just wanted to say "hello" and welcome. I am in Upton, MA, which is fairly close to where you live.

I still can not comfortably use my seat belt and I had my ICD implanted 06/7/06.

Sydney

New Member Introduction

Hi Everyone:My name is Jody and I am a 50 year old female from the Worcester, MA area, and I just had my defibrillator implanted two weeks ago today. I am rather new to all of this and have lived with Cardiomyopathy for the past 8 years on a minimal dose of Lisinopril. I started having problems with palpitations and a rapid heartbeat several months ago and after seeing my Cardiologist he recommended that I consider having a defibrillator put in to prevent a sudden death episode. After introducing several new meds (Water Pill, Beta Blocker and Potassium) and adjusting doseages the doctors decided to go ahead with the proceedure on 8/24/06. I was home for a week and after a few days I felt better and wanted to get back to work. Being at home there are so many things that I wanted to be doing, such as yard work, but until I'm off restrictions, I'm actually safer in the office sitting behind a desk doing paperwork and answering a phone. Yes I do come home tired, but, as I continue to heal from my implant, I hope I can get back to life as normal for me. The two issues I'm dealing with are finding a comfortable sleeping position other than on my back, and getting my drivers side seatbelt problem resolved. I ordered a sheepskin seatbelt cover hoping it will provide more padding than a towel wrapped around the seatbelt does. Right now even with a towel the pressure over my ICD is a bit uncomfortable. Maybe in time that will improve?I go back for my first check up on 9/11 and then to the Pacemaker Clinic on 9/28. I guess I'll get used to the routine soon enough, but I will say that I'm not looking forward to getting zapped for the first time either. I look forward to learning and sharing with all of you!Thanks for listening,Jody ChamplinHolden, MA

[Guest guest]

Hi Jodi--

Welcome to the list. I am almost four months out from getting my

implant after an episode of severe unstable angina capped by a cardiac

arrest, and I'm struggling with depression and anxiety. This is a great

list for help.

Lynn S.

------

Mama, homeschooler, writer, activist, spinner & knitter

http://www.siprelle.com

NOTICE: The National Security Agency may have read this email without

warning, warrant, or notice.

[Guest guest]

charade799@... wrote:

Welcome to the group. You will find a good amount of family

here to answer probably all your questions.

My husband (when he took the car) would place the seatbelt

under his arm. But here in CT that don't like that. Best bet is to

double check with the Motor Vehicle dept in Worcester if you can do

this. As the Worcester dept is so slow it may take several phone

calls. Yes I know how they are up there I used to live in Clinton.

Moved down to CT when my husband got sick.

I take it you go to UMass? Who is your doctor up there?

As far as sleeping you probably will never get comfortable on

your left side. My husband found that if he had a VERY soft pillow he

could place it by the unit once it had healed up somewhat and could

sleep more comfortable. Some people it does not bother at all.

Best

Gail

Hi Gail:

Thank you for the warm welcome to the group. I wanted to send you our

warmest "Sheltie Hugs" over your recent loss. I understand what you are

going through and one day at a time is about the best advise anyone can

give you. I do believe our loved ones never truly leave us, they are

always here in spirit with us and watching over us. I do believe that

this is what helps us get through the grief and loneliness until we

learn how to live the new life we have ahead of us. Please know that

has not left you, as he is always with you everywhere you go, as

you carry him in your heart always...

To answer your questions, yes, I am going to UMass, the University

Campus. I started off 8 years ago with Dr. Hogan, then had Dr.

Esteban. Both were residents and once they completed their residency

moved on to other hospitals. ly I was getting tired of the

revolving door, and after losing Dr. Esteban, I requested that I be

assigned to one of the staff Cardiologists. That was when I found my

current Cardiologist, Dr. Theo Myer, who I really am quite happy with.

Dr. Meyer assured me that he has been at UMass for 20 years and he is

not going to be leaving anytime soon. Once Dr. Meyer determined that I

needed a defibrillator, he referred me to Dr. Rashkin, who is the EP

who installed my ICD. Dr. Rashkin is also very competant and a

sweetheart as well.

I do not know what the incidence of heart failure is for the general

population, but, I think it is very weird that there are two of us in

my office who both have Heart Failure and both within this same year

had an ICD implanted. The strange coincidence is that other person is

one of my supervisors, and I just happen to sit right outside of her

office, and we both have the same two doctors. Gail, was diagnosed

with heart failure sometime last year, and had her ICD implanted in

January 2006. I've watched what Gail has been through as far as her ICD

implant and it was a wonderful education for me. Gail carried on after

her ICD implant as if it were no big deal, and so when it was my turn,

it was nothing to be worried about. Gail had told me everything, so I

knew what to expect. Where her proceedures were all sucessful, so I had

no reason to believe that mine would be any different. I call Gail my

Gineau Pig, as she blazes the trail and I seem to end up following her

lead. :-D

Yes we both seem to have our days where we are very tired, but we

manage to keep up the pace during the day in the office, then crash

once we get home at night. I guess as long as the medications keep us

going that is the important thing. Neither one of us is at retirement

age quite yet, and we both have to help keep our husbands and our pets

in the manner to which they are accustomed

;-) So I guess we help keep each other going and

isn't that what life is all about?

Have A Wonderful Evening,

Jody Champlin

Holden, MA

[Guest guest]

charade799@... wrote:

Welcome to the group. You will find a good amount of family

here to answer probably all your questions.

My husband (when he took the car) would place the seatbelt

under his arm. But here in CT that don't like that. Best bet is to

double check with the Motor Vehicle dept in Worcester if you can do

this. As the Worcester dept is so slow it may take several phone

calls. Yes I know how they are up there I used to live in Clinton.

Moved down to CT when my husband got sick.

I take it you go to UMass? Who is your doctor up there?

As far as sleeping you probably will never get comfortable on

your left side. My husband found that if he had a VERY soft pillow he

could place it by the unit once it had healed up somewhat and could

sleep more comfortable. Some people it does not bother at all.

Best

Gail

Hi Gail:

Thank you for the warm welcome to the group. I wanted to send you our

warmest "Sheltie Hugs" over your recent loss. I understand what you are

going through and one day at a time is about the best advise anyone can

give you. I do believe our loved ones never truly leave us, they are

always here in spirit with us and watching over us. I do believe that

this is what helps us get through the grief and loneliness until we

learn how to live the new life we have ahead of us. Please know that

has not left you, as he is always with you everywhere you go, as

you carry him in your heart always...

To answer your questions, yes, I am going to UMass, the University

Campus. I started off 8 years ago with Dr. Hogan, then had Dr.

Esteban. Both were residents and once they completed their residency

moved on to other hospitals. ly I was getting tired of the

revolving door, and after losing Dr. Esteban, I requested that I be

assigned to one of the staff Cardiologists. That was when I found my

current Cardiologist, Dr. Theo Myer, who I really am quite happy with.

Dr. Meyer assured me that he has been at UMass for 20 years and he is

not going to be leaving anytime soon. Once Dr. Meyer determined that I

needed a defibrillator, he referred me to Dr. Rashkin, who is the EP

who installed my ICD. Dr. Rashkin is also very competant and a

sweetheart as well.

I do not know what the incidence of heart failure is for the general

population, but, I think it is very weird that there are two of us in

my office who both have Heart Failure and both within this same year

had an ICD implanted. The strange coincidence is that other person is

one of my supervisors, and I just happen to sit right outside of her

office, and we both have the same two doctors. Gail, was diagnosed

with heart failure sometime last year, and had her ICD implanted in

January 2006. I've watched what Gail has been through as far as her ICD

implant and it was a wonderful education for me. Gail carried on after

her ICD implant as if it were no big deal, and so when it was my turn,

it was nothing to be worried about. Gail had told me everything, so I

knew what to expect. Where her proceedures were all sucessful, so I had

no reason to believe that mine would be any different. I call Gail my

Gineau Pig, as she blazes the trail and I seem to end up following her

lead. :-D

Yes we both seem to have our days where we are very tired, but we

manage to keep up the pace during the day in the office, then crash

once we get home at night. I guess as long as the medications keep us

going that is the important thing. Neither one of us is at retirement

age quite yet, and we both have to help keep our husbands and our pets

in the manner to which they are accustomed

;-) So I guess we help keep each other going and

isn't that what life is all about?

Have A Wonderful Evening,

Jody Champlin

Holden, MA

[Guest guest]

,

Where are you in Charlotte.

I am in Wesley Chapel....

Would love to meet you. ph was also adopted at birth... I too am in touch

with his birthmother (through email and occasionally telephone)

We just got back from Randolph Rd, ish Rite Center for Language/Reading

testing...

My home number is 704-225-3921 and cell is 704-989-1173

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/

[Guest guest]

Hi ,

Like yourself I have just joined this group. It is so good to be

able to finally communicate with other people who have children with

this Syndrome. My daughter is now 2 years 5 months and started

getting her fevers at 14 months - we thought she started getting

sick then because I finished breast feeding at 14 months. It has

been a very long 15 months - very exhausting emotionally as I know

something was not right with her as we were always told it was just

a virus and she was put on antibotics. It was a friend who recently

found some information on the internet that has finally put us on

the right path and Breanna is now in the process of being diagnosed

with .

I understand totally how you feel about the drugs, the future

health, schooling etc. I was getting to the point that I was

breaking down everytime Breanna got sick with these fevers as it is

so emotionally draining to see her so sick and I also have a 10

month old to look after. We now have Breanna on Prednisone which is

a steriod and we only give it to her on day 1 of her fevers - she

has only had it twice so far and yes it has bought her fevers closer

togehter from 29-40 days to 20 days. I am concerned about giving

her this drug however it is not in high doses and it is not regular

(say every week or day) and it makes such a huge difference. She

really has become a different child as she would have the fevers for

around 5 days and then for another 7 days she would be so whingey

and cry all the time - generally just not well. Now the next day

after prednisone she is perfect - it is amazing. I am still in the

process of doing research on this drug as I am not 100% confident

now what I am always told by doctors.

Another difficult factor is the communication as our children are

still very young - once that get a little older they will be able to

tell us actually where they are feeling sick. My daughter just

started complaining of sore knees to - I don't know 100% because

being only 2 she tends to sometimes make things up!!! She also gets

the glands up in her neck, sore throat and mouth ulcers (which have

just started appearing). Maybe the has to get worse before it

will get better - who knows....

I have my daughter seeing a naturapath at the moment to build her

immune system - she has never had any sickness other than fevers and

I want to make sure she does not start getting anything.

My husband and I are staying positive as we know our daughter will

eventually get through this and at least apart from monthly fevers

it does not leave any long term effect on them (I just need to do

more research on Prednisone). I know exactly how you feel though -

you do wonder how long this will go on for - my daughters illness

was controlling my every thought there for a while - I realise now

that I can't be like that as it was stressing me out.

You sound like a wonderful mum and you will get through this - when

you find something that will help to control the it will be a

big weight off your shoulders as that is how we feel.

I would be interested to see how Sam goes on the Prednisone with his

next fevers - I was just amazed how well it worked. We do not give

Breanna the dose on the second day she does not need it and my

doctor did not recommend it - I have noticed a few people in this

group give it twice - I am in Australia though so maybe the doctors

have different ideas over here.

Goodluck - it would be nice to stay in touch to see how

things go for little Sam.

Kind regards,

Kym

-- In , " " <catherineh@...> wrote:

>

> Hello everyone,

>

> My name is and our son Sam (who is just turning 2) was

> adopted and brought home with us at 3 days old. He is our only

child

> and is in the process of getting diagnosed, possibly . We have

> very little concrete health history on his birthmom (although we

are

> in contact with her) and no information whatsoever on his birthdad.

>

> Sam's first high fever was at 2 1/2 months old, and at that point

he

> went in to hospital and had spinal tap, chest x-ray, blood and

urine

> workups. High WBC but nothing else showed up.

>

> At 9 months he started fevering monthly, and at almost 1 year he

had

> his first febrile seizure. He has had 3 febrile seizures now, his

last

> one coming this past June, and a total of 3 visits to the hospital

(no

> over-night stays, just a lot of blood and urine work, IVs to combat

> dehydration, etc).

>

> We moved from Ohio to NC this summer and until that point had been

> seeing our family doctor in the Cleveland area. He and the hospital

> had chalked it up to " your child just gets sick a lot " and " must

be a

> virus " because the many many strep and other tests always came back

> negative. On the final hospital visit the attending physician (same

> Dr. who had seen him at 2 1/2 months) did suggest seeing an

> immunologist for further testing.

>

> Upon seeing a new pediatrician in Charlotte, we were immediately

> referred to an ID specialist and our first visit with him was

8/20. He

> mentioned as a possibility and wanted us to chart the fevers

and

> come back on 11/20. As far back as I've charted so far, Sam's

fevers

> have come 3-4 weeks apart: June 10, July 7, August 10, September 1,

> September 24, October 28. This summer was the first time we noticed

> the mouth sores and sore throat, and those symptoms seem to be

> increasing in severity, or perhaps he can vocalize/show those more

now

> as he gets older. During the most recent cycle he complained for

the

> first time of joint pain ( " Knee hurt, Mommy " ). We took him to the

> regular ped. to have his tonsils/throat checked - I could not get

in

> there to see myself, and I wanted her to check his mouth - she said

> his mouth/throat looked terrible. Ran a strep test to be sure -

> negative. She also took blood to test for JRA, no results on that

yet.

>

> He has not had any genetic testing. The ped. did call the

specialist

> and he gave an Rx for Prednisone, we are to give it to him on the

> first day of the next fever (should be around 11/20 when we are

> scheduled to see him next) and again on the second day. We have all

> the normal fears - will the steroid make the fevers come more

> frequently, will they hurt his body if he continues to take them,

will

> he continue to have fevers every month for years, will he be able

to

> go to school and have a " normal " life, will we have remission only

to

> see it return at puberty...so many questions. Until now we have

heard

> that they eventually " grow out of it " but as I learn that so many

> fevers show up again at puberty (and I have not yet read any

stories

> about children past puberty who have truly grown out of it) I

start to

> wonder how long our precious Sam will have to deal with this.

Really

> until this last episode we were still hopeful that something else

was

> at work here - we had always been able to match the fevers with

some

> event we thought might be related such as teething, being around

> someone sick, plane travel...now it is starting to sink in that

this

> is some sort of periodic fever syndrome and we are worried,

scared, sad.

>

> I am thankful for so many things, however - for finding this group,

> for our doctors in Charlotte who have been so aggressive, for Sam's

> perfect health in between episodes, and for the fact that I can

work

> from home and take care of Sam full time.

>

> I look forward to getting to know you all, sharing ideas, and I

pray

> that all of our children will grow into healthy adults.

>

>

>

[Guest guest]

My Daughter is 16 months old she has been sick for some time now. Before I was

deployed I was the stay at home dad. Now my wife stays home. The doctors keep

telling us it is nothing. But I was thinking that it was not normal for a child

to be this sick. It took many arguments over the phone to get her to get some

real answers. She did and in a few weeks the finale blood test will be done. I

am trying to get my wife to take her to NIH I just can not come home from Iraq

and see my Pumpkin sick all the time. I breaks my heart being thousands of

miles away and there is a dog on thing I can do about it. I just hope that she

will get the best care. I am sorry for venting as I did but tears roll down my

face as I type this letter.

vanessa_k31 <vanessa_k31@...> wrote: Hi ,

Like yourself I have just joined this group. It is so good to be

able to finally communicate with other people who have children with

this Syndrome. My daughter is now 2 years 5 months and started

getting her fevers at 14 months - we thought she started getting

sick then because I finished breast feeding at 14 months. It has

been a very long 15 months - very exhausting emotionally as I know

something was not right with her as we were always told it was just

a virus and she was put on antibotics. It was a friend who recently

found some information on the internet that has finally put us on

the right path and Breanna is now in the process of being diagnosed

with .

I understand totally how you feel about the drugs, the future

health, schooling etc. I was getting to the point that I was

breaking down everytime Breanna got sick with these fevers as it is

so emotionally draining to see her so sick and I also have a 10

month old to look after. We now have Breanna on Prednisone which is

a steriod and we only give it to her on day 1 of her fevers - she

has only had it twice so far and yes it has bought her fevers closer

togehter from 29-40 days to 20 days. I am concerned about giving

her this drug however it is not in high doses and it is not regular

(say every week or day) and it makes such a huge difference. She

really has become a different child as she would have the fevers for

around 5 days and then for another 7 days she would be so whingey

and cry all the time - generally just not well. Now the next day

after prednisone she is perfect - it is amazing. I am still in the

process of doing research on this drug as I am not 100% confident

now what I am always told by doctors.

Another difficult factor is the communication as our children are

still very young - once that get a little older they will be able to

tell us actually where they are feeling sick. My daughter just

started complaining of sore knees to - I don't know 100% because

being only 2 she tends to sometimes make things up!!! She also gets

the glands up in her neck, sore throat and mouth ulcers (which have

just started appearing). Maybe the has to get worse before it

will get better - who knows....

I have my daughter seeing a naturapath at the moment to build her

immune system - she has never had any sickness other than fevers and

I want to make sure she does not start getting anything.

My husband and I are staying positive as we know our daughter will

eventually get through this and at least apart from monthly fevers

it does not leave any long term effect on them (I just need to do

more research on Prednisone). I know exactly how you feel though -

you do wonder how long this will go on for - my daughters illness

was controlling my every thought there for a while - I realise now

that I can't be like that as it was stressing me out.

You sound like a wonderful mum and you will get through this - when

you find something that will help to control the it will be a

big weight off your shoulders as that is how we feel.

I would be interested to see how Sam goes on the Prednisone with his

next fevers - I was just amazed how well it worked. We do not give

Breanna the dose on the second day she does not need it and my

doctor did not recommend it - I have noticed a few people in this

group give it twice - I am in Australia though so maybe the doctors

have different ideas over here.

Goodluck - it would be nice to stay in touch to see how

things go for little Sam.

Kind regards,

Kym

-- In , " " <catherineh@...> wrote:

>

> Hello everyone,

>

> My name is and our son Sam (who is just turning 2) was

> adopted and brought home with us at 3 days old. He is our only

child

> and is in the process of getting diagnosed, possibly . We have

> very little concrete health history on his birthmom (although we

are

> in contact with her) and no information whatsoever on his birthdad.

>

> Sam's first high fever was at 2 1/2 months old, and at that point

he

> went in to hospital and had spinal tap, chest x-ray, blood and

urine

> workups. High WBC but nothing else showed up.

>

> At 9 months he started fevering monthly, and at almost 1 year he

had

> his first febrile seizure. He has had 3 febrile seizures now, his

last

> one coming this past June, and a total of 3 visits to the hospital

(no

> over-night stays, just a lot of blood and urine work, IVs to combat

> dehydration, etc).

>

> We moved from Ohio to NC this summer and until that point had been

> seeing our family doctor in the Cleveland area. He and the hospital

> had chalked it up to " your child just gets sick a lot " and " must

be a

> virus " because the many many strep and other tests always came back

> negative. On the final hospital visit the attending physician (same

> Dr. who had seen him at 2 1/2 months) did suggest seeing an

> immunologist for further testing.

>

> Upon seeing a new pediatrician in Charlotte, we were immediately

> referred to an ID specialist and our first visit with him was

8/20. He

> mentioned as a possibility and wanted us to chart the fevers

and

> come back on 11/20. As far back as I've charted so far, Sam's

fevers

> have come 3-4 weeks apart: June 10, July 7, August 10, September 1,

> September 24, October 28. This summer was the first time we noticed

> the mouth sores and sore throat, and those symptoms seem to be

> increasing in severity, or perhaps he can vocalize/show those more

now

> as he gets older. During the most recent cycle he complained for

the

> first time of joint pain ( " Knee hurt, Mommy " ). We took him to the

> regular ped. to have his tonsils/throat checked - I could not get

in

> there to see myself, and I wanted her to check his mouth - she said

> his mouth/throat looked terrible. Ran a strep test to be sure -

> negative. She also took blood to test for JRA, no results on that

yet.

>

> He has not had any genetic testing. The ped. did call the

specialist

> and he gave an Rx for Prednisone, we are to give it to him on the

> first day of the next fever (should be around 11/20 when we are

> scheduled to see him next) and again on the second day. We have all

> the normal fears - will the steroid make the fevers come more

> frequently, will they hurt his body if he continues to take them,

will

> he continue to have fevers every month for years, will he be able

to

> go to school and have a " normal " life, will we have remission only

to

> see it return at puberty...so many questions. Until now we have

heard

> that they eventually " grow out of it " but as I learn that so many

> fevers show up again at puberty (and I have not yet read any

stories

> about children past puberty who have truly grown out of it) I

start to

> wonder how long our precious Sam will have to deal with this.

Really

> until this last episode we were still hopeful that something else

was

> at work here - we had always been able to match the fevers with

some

> event we thought might be related such as teething, being around

> someone sick, plane travel...now it is starting to sink in that

this

> is some sort of periodic fever syndrome and we are worried,

scared, sad.

>

> I am thankful for so many things, however - for finding this group,

> for our doctors in Charlotte who have been so aggressive, for Sam's

> perfect health in between episodes, and for the fact that I can

work

> from home and take care of Sam full time.

>

> I look forward to getting to know you all, sharing ideas, and I

pray

> that all of our children will grow into healthy adults.

>

>

>

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

Access over 1 million songs - Music Unlimited Try it today.

[Guest guest]

________________________________

From:

[mailto: ] On Behalf Of darkbeautyforever

Sent: Tuesday, December 05, 2006 4:27 PM

Subject: New member introduction

Hi everyone,

My name is Samara and I reside in Cambridge,MA. I am a stay at home

mom

and have recently become interested in natural perfumery. I also

make

bath and body products as a hobby. I am really excited to be a

member of

this group and am already learning so much.

I recently placed an order for a variety of essential oils from this

company: New Directions Aromatics

<http://www.newdirectionsaromatics.com/essential-oils-ac-c-9_25.html

<http://www.newdirectionsaromatics.com/essential-oils-ac-c-9_25.html> >

. Their essential oils seem very reasonably priced (low even). Has

anyone else ordered from them before and if so what are your

thoughts on

the quality of their oils?

Kindest regards,

Samara

Hello Samara, :-) :-) :-)

Well, of course everyone here knows that I would probably take time to

respond to your introduction . . . My company is Samara Botane, a Samara

(which you probably well know) being a winged seed in addition to being a

most lovely name and wonderful metaphor for the renewal/rebirth of Nature

and hence the philosophy of our business. Welcome to Natural Perfumery and

the charming, ecclectic group here. I constantly get emails from people

across the globe about the name; people who have the Samara car from Russia,

people who have named their children Samara and even people who live in

Samara. It's been a delight to hear from them, and a great delight to see a

person with the name here. Welcome.

I'll be more vocal again after we get through the holiday season and things

settle down . . . Rather busy now.

Marcia Elston, Samara Botane http://www.wingedseed.com

" When the power of love becomes stronger than the love of power, we will

have peace. "

Jimi Hendrix

[Guest guest]

> My name is Samara and I reside in Cambridge,MA. I am a stay at home

>mom

> and have recently become interested in natural perfumery. I also

>make

> bath and body products as a hobby. I am really excited to be a

>member of

> this group and am already learning so much.

>

> I recently placed an order for a variety of essential oils from this

> company: New Directions Aromatics

> <http://www.newdirectionsaromatics.com/essential-oils-ac-c-9_25.html

><http://www.newdirectionsaromatics.com/essential-oils-ac-c-9_25.html> >

> . Their essential oils seem very reasonably priced (low even). Has

> anyone else ordered from them before and if so what are your

>thoughts on

> the quality of their oils?

>

> Kindest regards,

> Samara

Samara,

Welcome. I have never ordered from this vendor before but interesting

enough, I found their website just before I got your question. They seem to

have quite a few nice jars for anyone who is interested. BTW, most of their

Eos have a MSDS and COA so I think their stuff must be genuine.

Perhaps someone else can disagree or agree in this assumption of mine.

regards,

Poh Yee

_________________________________________________________________

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m/?sc_cid=msn_hotmail

[Guest guest]

At 05:50 PM 12/6/2006, you wrote:

> >

> > I recently placed an order for a variety of essential oils from this

> > company: New Directions Aromatics

> >

>

<http://www.newdirectionsaromatics.com/essential-oils-ac-c-9_25.html><http://www\

..newdirectionsaromatics.com/essential-oils-ac-c-9_25.html>

> >

> > . Their essential oils seem very reasonably priced (low even). Has

> > anyone else ordered from them before and if so what are your

> >thoughts on

> > the quality of their oils?

> >

> > Kindest regards,

> > Samara

>

>Samara,

>

>Welcome. I have never ordered from this vendor before but interesting

>enough, I found their website just before I got your question. They seem to

>have quite a few nice jars for anyone who is interested. BTW, most of their

>Eos have a MSDS and COA so I think their stuff must be genuine.

>

>Perhaps someone else can disagree or agree in this assumption of mine.

Hi Samara, welcome to the group. Thanks for introducing yourself to

the group, I see you already got Marcia a bit excited, lol.

I recommend that you and Poh-Yee do an archive search about this

company. We've discussed them a lot in the past. I've never ordered

from them, so I can't comment, but others have.

Anya McCoy

Anya's Garden of Natural Perfume http://anyasgarden.com

Artisan Natural Perfumers Guild http://artisannaturalperfumers.org

Natural Perfumers Chat Group

/

[Guest guest]

From:

[mailto: ] On Behalf Of darkbeautyforever

Sent: Tuesday, December 05, 2006 4:27 PM

Subject: New member introduction

Hi everyone,

My name is Samara and I reside in Cambridge,MA. I am a stay at home

mom

and have recently become interested in natural perfumery. I also

make

bath and body products as a hobby. I am really excited to be a

member of

this group and am already learning so much.

I recently placed an order for a variety of essential oils from this

company: New Directions Aromatics

<http://www.newdirectionsaromatics.com/essential-oils-ac-c-9_25.html

<http://www.newdirectionsaromatics.com/essential-oils-ac-c-9_25.html> >

. Their essential oils seem very reasonably priced (low even). Has

anyone else ordered from them before and if so what are your

thoughts on

the quality of their oils?

Kindest regards,

Samara

Hello Samara, :-) :-) :-)

Well, of course everyone here knows that I would probably take time to

respond to your introduction . . . My company is Samara Botane, a Samara

(which you probably well know) being a winged seed in addition to being a

most lovely name and wonderful metaphor for the renewal/rebirth of Nature

and hence the philosophy of our business. Welcome to Natural Perfumery and

the charming, ecclectic group here. I constantly get emails from people

across the globe about the name; people who have the Samara car from Russia,

people who have named their children Samara and even people who live in

Samara. It's been a delight to hear from them, and a great delight to see a

person with the name here. Welcome.

I'll be more vocal again after we get through the holiday season and things

settle down . . . Rather busy now.

Marcia Elston, Samara Botane http://www.wingedseed.com

" When the power of love becomes stronger than the love of power, we will

have peace. "

Jimi Hendrix

[Guest guest]

welcome - did you try the ocf website?

eileen

Quoting Angele McNally <angelemc@...>:

> Hello, my name is Angele. I found this group a couple weeks ago and

> wanted to briefly introduce myself, as well as express my admiration for

> those who are dealing with struggles far greater than my own. Ds, 10,

> hasn't been formally diagnosed yet with OCD, but has been having

> symptoms since about January mainly involving fear of contamination from

> chemicals, plants, shoes, etc., lots of handwashing, wanting his

> contaminated laundry washed numerous times, waking up in the middle of

> the night worrying if the doors are locked, waking me up in the middle

> of the night to tell me that he is worried about the doors being locked,

> etc. My sister has had OCD for years, and her symptoms have mainly to do

> with contamination fears, so I did recognize some of the same symptoms

> in him. My two concerns presently are to not unwittingly reinforce the

> OCD by our family's response to it, and to find my son a

> psychiatrist/therapist trained in CBT/ERT. I really want to take my time

> and find the right person, one who won't do more damage to an already

> miserable little boy. We are in the Marietta, GA area and would

> gratefully appreciate any recommendations.

>

> Thanks,

> Angele

>

>

>

[Guest guest]

Hi Angele!

Well you ( & son) are lucky so far as you already are familiar with

OCD and seem to have a good understanding for the treatment. Did

your sister go through therapy?

The OCD Foundation website has a place to search for therapists based

on where you live if you haven't tried that. Of course, it will only

show those who have registered to be listed on that site so asking

here and I guess going through the yellow pages to call & ask are

your other options. Also other sites to try to find help in specific

areas:

http://www.aabt.org/

http://www.aacap.org/

My son (now 18) hasn't dealt with contamination fears. His OCD began

back around age 11.5 and had a lot of touching, repeating ( " just

right " need) type of compulsions. Some thoughts. Presently he is

having bad thoughts and scrupulosity/religious issues. We've had

some mild and easy times during the years but a bit rough lately.

Have you talked with your son about OCD?

>

> Hello, my name is Angele. I found this group a couple weeks ago and

[Guest guest]

The only advice I can offer is to make certain whoever you choose has

a lot of successful experience in treating OCD. We recently

terminated the services of a therapist who *assured* us that he knew

exactly what he was doing and could help our children.

We were so panicked and desperate that we believed him and threw

ourselves and our children into his care. In real life, I don't

know that he has helped anyone with an actual problem.

He spoke with everyone associated with our kids school (IEP and 504)

programs and a couple of other professionals with regard to our

children. He told them all what amazing strides he was making with

our kids and how he was helping them " triumph over their OCD. " (BS!)

He was also convinced my husband was a cold, distant tough guy who

didn't believe in emotions, etc. NOTHING could be further from the

truth. So, he wanted to fix him too!

After 4 months, I bought a clue and dumped him. His response was to

put all the blame on ME.

And the worst part of it all, my kids lost 4 months of potential

progress and have suffered those 4 months in that they weren't moving

forward.

Learn from my mistake! Ask pointed questions AND trust your

intuition.

[Guest guest]

,

We also lost about 6 mos. of ground with an inept psychiatrist when my

DD first had symptoms. Lots of talk therapy, lots of blaming us (we had

just had twins and she was feeling displaced, supposedly), and NO

improvement. Just months of suffering. It makes me so mad that these

people can't read the obvious signs. Now that I know what I know now, I

would have had it figured out the first visit!

Dina

[Guest guest]

Amen to that!