New member to group

[Guest guest]

My name is Lichty and I recently joined this

group to gain information on and get

support from people that are also facing this

difficult prognosis in their children. My daughter

Madison was diagnosed with at six months old.

She started getting unknown periodic fevers at three

months old. We were told by her pediatrician that

they were viral and to just let it run its course.

After the third episode, the pediatrician was stumped

and referred us to an Infectious Disease doctor.

Three months later we got the diagnosis. At eight

months we started giving her Prednisolone. She went

from having fevers every 24 days to having them every

10 to 14 days. My husband and I feel helpless that

our little girl has to go through this and there is

nothing else we can do. I would appreciate any

advice.

Sincerely,

Lichty

________________________________________________________________________________\

____

Need a quick answer? Get one in minutes from people who know.

Ask your question on www.Answers.

[Guest guest]

,

I know it feels hard and horrible, but you are among the lucky. Many of us,

myself included did not get a diagnosis for years. I have a nine year old,

and it took almost 5 years and many many infectious disease specialists to

figure out what is wrong with her. It has only been 4 months that my

daughter has had any relief and that's because she has been taking

Cimetidine. (I refused steroids). So I truly feel for you, for we have all

been there, but be happy that you at least know. Just make sure as Fran

always says that you rule out other genetic mutations. Good luck you have

found a great group here. I know that I count my lucky stars.

Azzie,

Mom to Kianna 9 , Rustin 6, Bella 5 mo.

From: [mailto: ] On Behalf Of

Creamer

Sent: Saturday, February 03, 2007 1:28 PM

Subject: New member to group

My name is Lichty and I recently joined this

group to gain information on and get

support from people that are also facing this

difficult prognosis in their children. My daughter

Madison was diagnosed with at six months old.

She started getting unknown periodic fevers at three

months old. We were told by her pediatrician that

they were viral and to just let it run its course.

After the third episode, the pediatrician was stumped

and referred us to an Infectious Disease doctor.

Three months later we got the diagnosis. At eight

months we started giving her Prednisolone. She went

from having fevers every 24 days to having them every

10 to 14 days. My husband and I feel helpless that

our little girl has to go through this and there is

nothing else we can do. I would appreciate any

advice.

Sincerely,

Lichty

__________________________________________________________

Need a quick answer? Get one in minutes from people who know.

Ask your question on www.Answers.

[Guest guest]

, can you explain Cimetidine and why it works? Our doctors only

recommended Prednisone. And do you know the risks associated with this med.

Thanks so much. Kim

Azzie Fiouzi <azzief@...> wrote: ,

I know it feels hard and horrible, but you are among the lucky. Many of us,

myself included did not get a diagnosis for years. I have a nine year old,

and it took almost 5 years and many many infectious disease specialists to

figure out what is wrong with her. It has only been 4 months that my

daughter has had any relief and that's because she has been taking

Cimetidine. (I refused steroids). So I truly feel for you, for we have all

been there, but be happy that you at least know. Just make sure as Fran

always says that you rule out other genetic mutations. Good luck you have

found a great group here. I know that I count my lucky stars.

Azzie,

Mom to Kianna 9 , Rustin 6, Bella 5 mo.

From: [mailto: ] On Behalf Of

Creamer

Sent: Saturday, February 03, 2007 1:28 PM

Subject: New member to group

My name is Lichty and I recently joined this

group to gain information on and get

support from people that are also facing this

difficult prognosis in their children. My daughter

Madison was diagnosed with at six months old.

She started getting unknown periodic fevers at three

months old. We were told by her pediatrician that

they were viral and to just let it run its course.

After the third episode, the pediatrician was stumped

and referred us to an Infectious Disease doctor.

Three months later we got the diagnosis. At eight

months we started giving her Prednisolone. She went

from having fevers every 24 days to having them every

10 to 14 days. My husband and I feel helpless that

our little girl has to go through this and there is

nothing else we can do. I would appreciate any

advice.

Sincerely,

Lichty

__________________________________________________________

Need a quick answer? Get one in minutes from people who know.

Ask your question on www.Answers.

[Guest guest]

Azzie,

I'm sorry to here that it took so long to get a

diagnosis for your daughter. I do feel lucky that we

have not had severe symptoms but I do wonder if we are

on the right path for her diagnosis. I know the ID

doctor did some other testing but now that I have

specific info from this group, I can make sure the

right tests were done. How long has your daughter had

symptoms? The ID doctor we saw said my daughter

should out grow them by four or five, now I'm

wondering if that is true. Thanks for your advice.

Madison 10 months

--- Azzie Fiouzi <azzief@...> wrote:

> ,

>

> I know it feels hard and horrible, but you are among

> the lucky. Many of us,

> myself included did not get a diagnosis for years.

> I have a nine year old,

> and it took almost 5 years and many many infectious

> disease specialists to

> figure out what is wrong with her. It has only been

> 4 months that my

> daughter has had any relief and that's because she

> has been taking

> Cimetidine. (I refused steroids). So I truly feel

> for you, for we have all

> been there, but be happy that you at least know.

> Just make sure as Fran

> always says that you rule out other genetic

> mutations. Good luck you have

> found a great group here. I know that I count my

> lucky stars.

>

> Azzie,

>

> Mom to Kianna 9 , Rustin 6, Bella 5 mo.

>

>

>

>

>

> From:

> [mailto: ] On Behalf Of

> Creamer

> Sent: Saturday, February 03, 2007 1:28 PM

>

> Subject: New member to group

>

>

>

> My name is Lichty and I recently joined

> this

> group to gain information on and get

> support from people that are also facing this

> difficult prognosis in their children. My daughter

> Madison was diagnosed with at six months old.

> She started getting unknown periodic fevers at three

> months old. We were told by her pediatrician that

> they were viral and to just let it run its course.

> After the third episode, the pediatrician was

> stumped

> and referred us to an Infectious Disease doctor.

> Three months later we got the diagnosis. At eight

> months we started giving her Prednisolone. She went

> from having fevers every 24 days to having them

> every

> 10 to 14 days. My husband and I feel helpless that

> our little girl has to go through this and there is

> nothing else we can do. I would appreciate any

> advice.

>

> Sincerely,

> Lichty

>

>

__________________________________________________________

> Need a quick answer? Get one in minutes from people

> who know.

> Ask your question on www.Answers.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Have a burning question?

Go to www.Answers. and get answers from real people who know.

[Guest guest]

Kim,

I think Azzie's daughter is one Cimetidine. Our

doctor has never suggested. I also am wondering the

details about it so if anyone could fill us in it

would be appreciated.

Thanks,

--- Kimberli Cowman <kimc2819@...> wrote:

> , can you explain Cimetidine and why it

> works? Our doctors only recommended Prednisone. And

> do you know the risks associated with this med.

> Thanks so much. Kim

>

> Azzie Fiouzi <azzief@...> wrote:

> ,

>

> I know it feels hard and horrible, but you are among

> the lucky. Many of us,

> myself included did not get a diagnosis for years. I

> have a nine year old,

> and it took almost 5 years and many many infectious

> disease specialists to

> figure out what is wrong with her. It has only been

> 4 months that my

> daughter has had any relief and that's because she

> has been taking

> Cimetidine. (I refused steroids). So I truly feel

> for you, for we have all

> been there, but be happy that you at least know.

> Just make sure as Fran

> always says that you rule out other genetic

> mutations. Good luck you have

> found a great group here. I know that I count my

> lucky stars.

>

> Azzie,

>

> Mom to Kianna 9 , Rustin 6, Bella 5 mo.

>

> From:

> [mailto: ] On Behalf Of

> Creamer

> Sent: Saturday, February 03, 2007 1:28 PM

>

> Subject: New member to group

>

> My name is Lichty and I recently joined

> this

> group to gain information on and get

> support from people that are also facing this

> difficult prognosis in their children. My daughter

> Madison was diagnosed with at six months old.

> She started getting unknown periodic fevers at three

> months old. We were told by her pediatrician that

> they were viral and to just let it run its course.

> After the third episode, the pediatrician was

> stumped

> and referred us to an Infectious Disease doctor.

> Three months later we got the diagnosis. At eight

> months we started giving her Prednisolone. She went

> from having fevers every 24 days to having them

> every

> 10 to 14 days. My husband and I feel helpless that

> our little girl has to go through this and there is

> nothing else we can do. I would appreciate any

> advice.

>

> Sincerely,

> Lichty

>

>

__________________________________________________________

> Need a quick answer? Get one in minutes from people

> who know.

> Ask your question on www.Answers.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

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

> Finding fabulous fares is fun.

> Let FareChase search your favorite travel

> sites to find flight and hotel bargains.

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Need a quick answer? Get one in minutes from people who know.

Ask your question on www.Answers.

[Guest guest]

,

My daughter had her first cycle at 10 months, we were on vacation in Hawaii,

and thought she had heat exhaustion! Her next one came on her first

birthday and then like clockwork every 4 -6 weeks! And hers last a week and

go as high as 105! My pediatrician was the first suspect , but to

make sure he sent us to an ID. The first ID was brutal to my daughter we

were there for nearly 4 hours. They did not call it ! They said she

didn't fit the pattern, which she does, the second ID thought she may have

FMF, but her tests came back negative, so they just said she had cyclical

fevers and wanted to put her on prednisone, I did not allow it, (my

stupidity) because my friends daughter was on steroids for her asthma and

had swollen up like a balloon and it scared me. It wasn't until this last

July that we went to our last ID doctor, and they put her on Cimetidine,

(with the dosage coming from Fran, they were way off!) They have also ruled

out almost everything under the sun! Until this last Sunday my daughter had

not cycled in 6 months. I have been hoping and praying that she outgrows

it, but other than this 6 month relief, ... So we are giving the Cimetidine

until june, (11 mo) and then if we see the patterns repeating we will take

out her tonsils, she has missed so much school that she is really struggling

and we just can't see her doing it much longer. My pediatrician is VERY

much against a tonsillectomy. This is why we have waited this long. This

doesn't mean that your daughter will not outgrow it, it just means that ours

hasn't! Hopefully that helps.

Azzie

From: [mailto: ] On Behalf Of

Creamer

Sent: Sunday, February 04, 2007 5:07 PM

Subject: RE: New member to group

Azzie,

I'm sorry to here that it took so long to get a

diagnosis for your daughter. I do feel lucky that we

have not had severe symptoms but I do wonder if we are

on the right path for her diagnosis. I know the ID

doctor did some other testing but now that I have

specific info from this group, I can make sure the

right tests were done. How long has your daughter had

symptoms? The ID doctor we saw said my daughter

should out grow them by four or five, now I'm

wondering if that is true. Thanks for your advice.

Madison 10 months

--- Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> >

wrote:

> ,

>

> I know it feels hard and horrible, but you are among

> the lucky. Many of us,

> myself included did not get a diagnosis for years.

> I have a nine year old,

> and it took almost 5 years and many many infectious

> disease specialists to

> figure out what is wrong with her. It has only been

> 4 months that my

> daughter has had any relief and that's because she

> has been taking

> Cimetidine. (I refused steroids). So I truly feel

> for you, for we have all

> been there, but be happy that you at least know.

> Just make sure as Fran

> always says that you rule out other genetic

> mutations. Good luck you have

> found a great group here. I know that I count my

> lucky stars.

>

> Azzie,

>

> Mom to Kianna 9 , Rustin 6, Bella 5 mo.

>

>

>

>

>

> From: <mailto:%40>

> [mailto: <mailto:%40> ] On Behalf

Of

> Creamer

> Sent: Saturday, February 03, 2007 1:28 PM

> <mailto:%40>

> Subject: New member to group

>

>

>

> My name is Lichty and I recently joined

> this

> group to gain information on and get

> support from people that are also facing this

> difficult prognosis in their children. My daughter

> Madison was diagnosed with at six months old.

> She started getting unknown periodic fevers at three

> months old. We were told by her pediatrician that

> they were viral and to just let it run its course.

> After the third episode, the pediatrician was

> stumped

> and referred us to an Infectious Disease doctor.

> Three months later we got the diagnosis. At eight

> months we started giving her Prednisolone. She went

> from having fevers every 24 days to having them

> every

> 10 to 14 days. My husband and I feel helpless that

> our little girl has to go through this and there is

> nothing else we can do. I would appreciate any

> advice.

>

> Sincerely,

> Lichty

>

>

__________________________________________________________

> Need a quick answer? Get one in minutes from people

> who know.

> Ask your question on www.Answers.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Have a burning question?

Go to www.Answers. and get answers from real people who know.

[Guest guest]

My daughter started a regular cycle at 4. She was always sick a lot younger

than that, but we never noticed a pattern. She was diagnosed a year ago at 51/2

- she is now 6 1/2 and no sign that its stopping yet. (just hopeful thinking)

Trish

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

Never miss an email again!

Toolbar alerts you the instant new Mail arrives. Check it out.

[Guest guest]

I was curious as to why the Dr. is so against tonsillectomy? My son had his

removed and I was wondering why the Dr. would be against it.

Thank you

Azzie Fiouzi <azzief@...> wrote:

,

My daughter had her first cycle at 10 months, we were on vacation in Hawaii,

and thought she had heat exhaustion! Her next one came on her first

birthday and then like clockwork every 4 -6 weeks! And hers last a week and

go as high as 105! My pediatrician was the first suspect , but to

make sure he sent us to an ID. The first ID was brutal to my daughter we

were there for nearly 4 hours. They did not call it ! They said she

didn't fit the pattern, which she does, the second ID thought she may have

FMF, but her tests came back negative, so they just said she had cyclical

fevers and wanted to put her on prednisone, I did not allow it, (my

stupidity) because my friends daughter was on steroids for her asthma and

had swollen up like a balloon and it scared me. It wasn't until this last

July that we went to our last ID doctor, and they put her on Cimetidine,

(with the dosage coming from Fran, they were way off!) They have also ruled

out almost everything under the sun! Until this last Sunday my daughter had

not cycled in 6 months. I have been hoping and praying that she outgrows

it, but other than this 6 month relief, ... So we are giving the Cimetidine

until june, (11 mo) and then if we see the patterns repeating we will take

out her tonsils, she has missed so much school that she is really struggling

and we just can't see her doing it much longer. My pediatrician is VERY

much against a tonsillectomy. This is why we have waited this long. This

doesn't mean that your daughter will not outgrow it, it just means that ours

hasn't! Hopefully that helps.

Azzie

From: [mailto: ] On Behalf Of

Creamer

Sent: Sunday, February 04, 2007 5:07 PM

Subject: RE: New member to group

Azzie,

I'm sorry to here that it took so long to get a

diagnosis for your daughter. I do feel lucky that we

have not had severe symptoms but I do wonder if we are

on the right path for her diagnosis. I know the ID

doctor did some other testing but now that I have

specific info from this group, I can make sure the

right tests were done. How long has your daughter had

symptoms? The ID doctor we saw said my daughter

should out grow them by four or five, now I'm

wondering if that is true. Thanks for your advice.

Madison 10 months

--- Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> >

wrote:

> ,

>

> I know it feels hard and horrible, but you are among

> the lucky. Many of us,

> myself included did not get a diagnosis for years.

> I have a nine year old,

> and it took almost 5 years and many many infectious

> disease specialists to

> figure out what is wrong with her. It has only been

> 4 months that my

> daughter has had any relief and that's because she

> has been taking

> Cimetidine. (I refused steroids). So I truly feel

> for you, for we have all

> been there, but be happy that you at least know.

> Just make sure as Fran

> always says that you rule out other genetic

> mutations. Good luck you have

> found a great group here. I know that I count my

> lucky stars.

>

> Azzie,

>

> Mom to Kianna 9 , Rustin 6, Bella 5 mo.

>

>

>

>

>

> From: <mailto:%40>

> [mailto: <mailto:%40> ] On Behalf

Of

> Creamer

> Sent: Saturday, February 03, 2007 1:28 PM

> <mailto:%40>

> Subject: New member to group

>

>

>

> My name is Lichty and I recently joined

> this

> group to gain information on and get

> support from people that are also facing this

> difficult prognosis in their children. My daughter

> Madison was diagnosed with at six months old.

> She started getting unknown periodic fevers at three

> months old. We were told by her pediatrician that

> they were viral and to just let it run its course.

> After the third episode, the pediatrician was

> stumped

> and referred us to an Infectious Disease doctor.

> Three months later we got the diagnosis. At eight

> months we started giving her Prednisolone. She went

> from having fevers every 24 days to having them

> every

> 10 to 14 days. My husband and I feel helpless that

> our little girl has to go through this and there is

> nothing else we can do. I would appreciate any

> advice.

>

> Sincerely,

> Lichty

>

>

__________________________________________________________

> Need a quick answer? Get one in minutes from people

> who know.

> Ask your question on www.Answers.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Have a burning question?

Go to www.Answers. and get answers from real people who know.

[Guest guest]

I think that he was against it because he didn't see a hundred percent cure

with the tonsillectomy. It doesn't always work to alleviate the problem so

he didn't want to rush and just remove them if it wasn't necc. Does your

son still get fevers? And how old is he?

Azzie

From: [mailto: ] On Behalf Of

Leanne

Sent: Tuesday, February 06, 2007 1:34 PM

Subject: RE: New member to group

I was curious as to why the Dr. is so against tonsillectomy? My son had his

removed and I was wondering why the Dr. would be against it.

Thank you

Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> > wrote:

,

My daughter had her first cycle at 10 months, we were on vacation in Hawaii,

and thought she had heat exhaustion! Her next one came on her first

birthday and then like clockwork every 4 -6 weeks! And hers last a week and

go as high as 105! My pediatrician was the first suspect , but to

make sure he sent us to an ID. The first ID was brutal to my daughter we

were there for nearly 4 hours. They did not call it ! They said she

didn't fit the pattern, which she does, the second ID thought she may have

FMF, but her tests came back negative, so they just said she had cyclical

fevers and wanted to put her on prednisone, I did not allow it, (my

stupidity) because my friends daughter was on steroids for her asthma and

had swollen up like a balloon and it scared me. It wasn't until this last

July that we went to our last ID doctor, and they put her on Cimetidine,

(with the dosage coming from Fran, they were way off!) They have also ruled

out almost everything under the sun! Until this last Sunday my daughter had

not cycled in 6 months. I have been hoping and praying that she outgrows

it, but other than this 6 month relief, ... So we are giving the Cimetidine

until june, (11 mo) and then if we see the patterns repeating we will take

out her tonsils, she has missed so much school that she is really struggling

and we just can't see her doing it much longer. My pediatrician is VERY

much against a tonsillectomy. This is why we have waited this long. This

doesn't mean that your daughter will not outgrow it, it just means that ours

hasn't! Hopefully that helps.

Azzie

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf

Of

Creamer

Sent: Sunday, February 04, 2007 5:07 PM

<mailto:%40>

Subject: RE: New member to group

Azzie,

I'm sorry to here that it took so long to get a

diagnosis for your daughter. I do feel lucky that we

have not had severe symptoms but I do wonder if we are

on the right path for her diagnosis. I know the ID

doctor did some other testing but now that I have

specific info from this group, I can make sure the

right tests were done. How long has your daughter had

symptoms? The ID doctor we saw said my daughter

should out grow them by four or five, now I'm

wondering if that is true. Thanks for your advice.

Madison 10 months

--- Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net>

<mailto:azzief%40sbcglobal.net> >

wrote:

> ,

>

> I know it feels hard and horrible, but you are among

> the lucky. Many of us,

> myself included did not get a diagnosis for years.

> I have a nine year old,

> and it took almost 5 years and many many infectious

> disease specialists to

> figure out what is wrong with her. It has only been

> 4 months that my

> daughter has had any relief and that's because she

> has been taking

> Cimetidine. (I refused steroids). So I truly feel

> for you, for we have all

> been there, but be happy that you at least know.

> Just make sure as Fran

> always says that you rule out other genetic

> mutations. Good luck you have

> found a great group here. I know that I count my

> lucky stars.

>

> Azzie,

>

> Mom to Kianna 9 , Rustin 6, Bella 5 mo.

>

>

>

>

>

> From: <mailto:%40>

<mailto:%40>

> [mailto: <mailto:%40>

<mailto:%40> ] On Behalf

Of

> Creamer

> Sent: Saturday, February 03, 2007 1:28 PM

> <mailto:%40>

<mailto:%40>

> Subject: New member to group

>

>

>

> My name is Lichty and I recently joined

> this

> group to gain information on and get

> support from people that are also facing this

> difficult prognosis in their children. My daughter

> Madison was diagnosed with at six months old.

> She started getting unknown periodic fevers at three

> months old. We were told by her pediatrician that

> they were viral and to just let it run its course.

> After the third episode, the pediatrician was

> stumped

> and referred us to an Infectious Disease doctor.

> Three months later we got the diagnosis. At eight

> months we started giving her Prednisolone. She went

> from having fevers every 24 days to having them

> every

> 10 to 14 days. My husband and I feel helpless that

> our little girl has to go through this and there is

> nothing else we can do. I would appreciate any

> advice.

>

> Sincerely,

> Lichty

>

>

__________________________________________________________

> Need a quick answer? Get one in minutes from people

> who know.

> Ask your question on www.Answers.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Have a burning question?

Go to www.Answers. and get answers from real people who know.

[Guest guest]

Cade is 4 yrs old and he had his tonsils & adnoids out in October and he has

been fever free. Sometimes he complains that his feet hurt and only at night.

But no fever and he eats better and is just an all around little 4 yr old boy

now.

Azzie Fiouzi <azzief@...> wrote: I think that he was against

it because he didn't see a hundred percent cure

with the tonsillectomy. It doesn't always work to alleviate the problem so

he didn't want to rush and just remove them if it wasn't necc. Does your

son still get fevers? And how old is he?

Azzie

From: [mailto: ] On Behalf Of

Leanne

Sent: Tuesday, February 06, 2007 1:34 PM

Subject: RE: New member to group

I was curious as to why the Dr. is so against tonsillectomy? My son had his

removed and I was wondering why the Dr. would be against it.

Thank you

Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> > wrote:

,

My daughter had her first cycle at 10 months, we were on vacation in Hawaii,

and thought she had heat exhaustion! Her next one came on her first

birthday and then like clockwork every 4 -6 weeks! And hers last a week and

go as high as 105! My pediatrician was the first suspect , but to

make sure he sent us to an ID. The first ID was brutal to my daughter we

were there for nearly 4 hours. They did not call it ! They said she

didn't fit the pattern, which she does, the second ID thought she may have

FMF, but her tests came back negative, so they just said she had cyclical

fevers and wanted to put her on prednisone, I did not allow it, (my

stupidity) because my friends daughter was on steroids for her asthma and

had swollen up like a balloon and it scared me. It wasn't until this last

July that we went to our last ID doctor, and they put her on Cimetidine,

(with the dosage coming from Fran, they were way off!) They have also ruled

out almost everything under the sun! Until this last Sunday my daughter had

not cycled in 6 months. I have been hoping and praying that she outgrows

it, but other than this 6 month relief, ... So we are giving the Cimetidine

until june, (11 mo) and then if we see the patterns repeating we will take

out her tonsils, she has missed so much school that she is really struggling

and we just can't see her doing it much longer. My pediatrician is VERY

much against a tonsillectomy. This is why we have waited this long. This

doesn't mean that your daughter will not outgrow it, it just means that ours

hasn't! Hopefully that helps.

Azzie

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf

Of

Creamer

Sent: Sunday, February 04, 2007 5:07 PM

<mailto:%40>

Subject: RE: New member to group

Azzie,

I'm sorry to here that it took so long to get a

diagnosis for your daughter. I do feel lucky that we

have not had severe symptoms but I do wonder if we are

on the right path for her diagnosis. I know the ID

doctor did some other testing but now that I have

specific info from this group, I can make sure the

right tests were done. How long has your daughter had

symptoms? The ID doctor we saw said my daughter

should out grow them by four or five, now I'm

wondering if that is true. Thanks for your advice.

Madison 10 months

--- Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net>

<mailto:azzief%40sbcglobal.net> >

wrote:

> ,

>

> I know it feels hard and horrible, but you are among

> the lucky. Many of us,

> myself included did not get a diagnosis for years.

> I have a nine year old,

> and it took almost 5 years and many many infectious

> disease specialists to

> figure out what is wrong with her. It has only been

> 4 months that my

> daughter has had any relief and that's because she

> has been taking

> Cimetidine. (I refused steroids). So I truly feel

> for you, for we have all

> been there, but be happy that you at least know.

> Just make sure as Fran

> always says that you rule out other genetic

> mutations. Good luck you have

> found a great group here. I know that I count my

> lucky stars.

>

> Azzie,

>

> Mom to Kianna 9 , Rustin 6, Bella 5 mo.

>

>

>

>

>

> From: <mailto:%40>

<mailto:%40>

> [mailto: <mailto:%40>

<mailto:%40> ] On Behalf

Of

> Creamer

> Sent: Saturday, February 03, 2007 1:28 PM

> <mailto:%40>

<mailto:%40>

> Subject: New member to group

>

>

>

> My name is Lichty and I recently joined

> this

> group to gain information on and get

> support from people that are also facing this

> difficult prognosis in their children. My daughter

> Madison was diagnosed with at six months old.

> She started getting unknown periodic fevers at three

> months old. We were told by her pediatrician that

> they were viral and to just let it run its course.

> After the third episode, the pediatrician was

> stumped

> and referred us to an Infectious Disease doctor.

> Three months later we got the diagnosis. At eight

> months we started giving her Prednisolone. She went

> from having fevers every 24 days to having them

> every

> 10 to 14 days. My husband and I feel helpless that

> our little girl has to go through this and there is

> nothing else we can do. I would appreciate any

> advice.

>

> Sincerely,

> Lichty

>

>

__________________________________________________________

> Need a quick answer? Get one in minutes from people

> who know.

> Ask your question on www.Answers.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Have a burning question?

Go to www.Answers. and get answers from real people who know.

[Guest guest]

Hopefully if and when we do this, (hopefully this summer) we will have the

same results.

I'm glad for your little boy, its comforting to know that you were able to

help your child.

Azzie, Mom to Kianna 9 years old, Rustin 6, Bella 5 mo

From: [mailto: ] On Behalf Of

Leanne

Sent: Tuesday, February 06, 2007 4:21 PM

Subject: RE: New member to group

Cade is 4 yrs old and he had his tonsils & adnoids out in October and he has

been fever free. Sometimes he complains that his feet hurt and only at

night. But no fever and he eats better and is just an all around little 4 yr

old boy now.

Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> > wrote:

I think that he was against it because he didn't see a hundred percent cure

with the tonsillectomy. It doesn't always work to alleviate the problem so

he didn't want to rush and just remove them if it wasn't necc. Does your

son still get fevers? And how old is he?

Azzie

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf

Of

Leanne

Sent: Tuesday, February 06, 2007 1:34 PM

<mailto:%40>

Subject: RE: New member to group

I was curious as to why the Dr. is so against tonsillectomy? My son had his

removed and I was wondering why the Dr. would be against it.

Thank you

Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net>

<mailto:azzief%40sbcglobal.net> > wrote:

,

My daughter had her first cycle at 10 months, we were on vacation in Hawaii,

and thought she had heat exhaustion! Her next one came on her first

birthday and then like clockwork every 4 -6 weeks! And hers last a week and

go as high as 105! My pediatrician was the first suspect , but to

make sure he sent us to an ID. The first ID was brutal to my daughter we

were there for nearly 4 hours. They did not call it ! They said she

didn't fit the pattern, which she does, the second ID thought she may have

FMF, but her tests came back negative, so they just said she had cyclical

fevers and wanted to put her on prednisone, I did not allow it, (my

stupidity) because my friends daughter was on steroids for her asthma and

had swollen up like a balloon and it scared me. It wasn't until this last

July that we went to our last ID doctor, and they put her on Cimetidine,

(with the dosage coming from Fran, they were way off!) They have also ruled

out almost everything under the sun! Until this last Sunday my daughter had

not cycled in 6 months. I have been hoping and praying that she outgrows

it, but other than this 6 month relief, ... So we are giving the Cimetidine

until june, (11 mo) and then if we see the patterns repeating we will take

out her tonsils, she has missed so much school that she is really struggling

and we just can't see her doing it much longer. My pediatrician is VERY

much against a tonsillectomy. This is why we have waited this long. This

doesn't mean that your daughter will not outgrow it, it just means that ours

hasn't! Hopefully that helps.

Azzie

From: <mailto:%40>

<mailto:%40>

[mailto: <mailto:%40>

<mailto:%40> ] On Behalf

Of

Creamer

Sent: Sunday, February 04, 2007 5:07 PM

<mailto:%40>

<mailto:%40>

Subject: RE: New member to group

Azzie,

I'm sorry to here that it took so long to get a

diagnosis for your daughter. I do feel lucky that we

have not had severe symptoms but I do wonder if we are

on the right path for her diagnosis. I know the ID

doctor did some other testing but now that I have

specific info from this group, I can make sure the

right tests were done. How long has your daughter had

symptoms? The ID doctor we saw said my daughter

should out grow them by four or five, now I'm

wondering if that is true. Thanks for your advice.

Madison 10 months

--- Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net>

<mailto:azzief%40sbcglobal.net>

<mailto:azzief%40sbcglobal.net> >

wrote:

> ,

>

> I know it feels hard and horrible, but you are among

> the lucky. Many of us,

> myself included did not get a diagnosis for years.

> I have a nine year old,

> and it took almost 5 years and many many infectious

> disease specialists to

> figure out what is wrong with her. It has only been

> 4 months that my

> daughter has had any relief and that's because she

> has been taking

> Cimetidine. (I refused steroids). So I truly feel

> for you, for we have all

> been there, but be happy that you at least know.

> Just make sure as Fran

> always says that you rule out other genetic

> mutations. Good luck you have

> found a great group here. I know that I count my

> lucky stars.

>

> Azzie,

>

> Mom to Kianna 9 , Rustin 6, Bella 5 mo.

>

>

>

>

>

> From: <mailto:%40>

<mailto:%40>

<mailto:%40>

> [mailto: <mailto:%40>

<mailto:%40>

<mailto:%40> ] On Behalf

Of

> Creamer

> Sent: Saturday, February 03, 2007 1:28 PM

> <mailto:%40>

<mailto:%40>

<mailto:%40>

> Subject: New member to group

>

>

>

> My name is Lichty and I recently joined

> this

> group to gain information on and get

> support from people that are also facing this

> difficult prognosis in their children. My daughter

> Madison was diagnosed with at six months old.

> She started getting unknown periodic fevers at three

> months old. We were told by her pediatrician that

> they were viral and to just let it run its course.

> After the third episode, the pediatrician was

> stumped

> and referred us to an Infectious Disease doctor.

> Three months later we got the diagnosis. At eight

> months we started giving her Prednisolone. She went

> from having fevers every 24 days to having them

> every

> 10 to 14 days. My husband and I feel helpless that

> our little girl has to go through this and there is

> nothing else we can do. I would appreciate any

> advice.

>

> Sincerely,

> Lichty

>

>

__________________________________________________________

> Need a quick answer? Get one in minutes from people

> who know.

> Ask your question on www.Answers.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Have a burning question?

Go to www.Answers. and get answers from real people who know.