Re: Growing out of and words from Jospeh Baldizzi

[Guest guest]

Hi ,

We got a diagnosis with almost 4 years ago (Can't believe that!!!).

We experienced a 22 month break completely from the fevers when my son was 4

-5. We had just about made it through Kindergarten when he started cycling

again every 4-6 weeks and has been cycling as such pretty regularly to this

minute (he is in 4th grade now and at 102.4). The Prednisone (and we dose on

the high end) has kept us functioning with very few days of school missed.

Our diagnosis came from All Children's Ped. Infectious Disease Specialist Dr.

DuMuois (sp?). I am married to a physician and we have a lot of friends

who are docs...this was a true Zebra to all of them and it took a while to

get to the right MD. You have to listen to your child and follow your

motherly intuition as well.

Faun M. Baldizzi

Tierra Verde, FL

ph 9

Jaeda 8

4

[Guest guest]

Hi Faun, reading phs statement is like talking to my own 7yr old boy! Are

his episodes regular and have you been to NIH or have a diagnosis? 's

fevers are not regular and our ID and I are going to try our 1st dose of Pred

his next febrile ep.

, S.D., CA

Growing out of and words from Jospeh Baldizzi

Hi All...

A couple of you had questions, so I thought I would reply. First off

though...this is Faun and NOT Fran. We both have ph's, we both have last

names

that start with a B...and she used to live in FL too...it got really

confusing there for a while for many! lol

ph has not had his tonsils out. At the time of diagnosis, the dr. said

the risk of a surgery that may not work was not worth it...to give the

prednisone a try and go from there. The Prednisone has been a true staple of

our

lives. It goes everywhere with us. Believe me, I was SO hesitant to use it,

but after ph hit 106.3, I was all for it. It has worked VERY well for us

for now. ph takes his 6 tablets, on his own because he feels THAT bad.

He says it feels like he is on fire and burning from the inside. He does

get the headaches...and sometimes a bit of the dizziness. VERY sensitive to

noises though. He is a normal active child when fever free. His height and

weight are average...maybe a bit on the thin side. When we have an episode

and abort it, I typically keep him out of PE and the heat for a few days so he

doesn't overdo it. We too have found that stressors will coincide with an

episode. I keep Tylenol and Motrin at school for him to take as he feels

necessary. He will occasionally get the cancer sores and we use " Canka " ,

Amosan,

and " Canker Covers " . He actually functions very well at a temp of 102 or

less...above that he looks and feels pretty tired and sleeps a lot.

Here are ph's words...Tell me what a episode is like...

" It feels like your brain is hitting the edges of your skull and you get bad

headaches. Sometimes your visions goes blurry for a few seconds and then

goes back to normal. Your body gets really hot and feels like you are burning

form the inside. When I have the chills, I feel the goose bumps from on top

of my head going all the way down to my feet. My throat sometimes hurts so I

try to drink water to make it feel better. I feel very tired and like I just

want to sit on the sofa and watch tv or sleep. For the younger kids make sure

you give them the Tylenol and Motrin. The meltaways are good for young

kids. If you try to give them the steriods and they are younger than 5 or 6

they will probably throw up because the taste is really bad. I feel very badly

for the young babies with . When they go to get their blood drawn they

should use the Emla cream to numb the skin and the butterfly needles are

really good for small children because they (the clinic staff) make them (the

kids) feel better when they stick the needle in you because they can pretend

it

is flying around like a butterfly. Sometimes your legs and your bones hurt.

And when you are laying down your eyes sometimes water and it hurts to

blink. When I have an episode, I feel really badly. I like to take the

Prednisone because it makes me feel better. I don't like taking it at the same

time

though because it tastes really bad and sometimes gives me nightmares, but it

really helps me feel better. "

Faun M. Baldizzi

411 Monte Cristo Blvd.

Tierra Verde, FL 33715

727-864-6656 Home

727-463-6656 Cell

[Guest guest]

Hi Faun, reading phs statement is like talking to my own 7yr old boy! Are

his episodes regular and have you been to NIH or have a diagnosis? 's

fevers are not regular and our ID and I are going to try our 1st dose of Pred

his next febrile ep.

, S.D., CA

Growing out of and words from Jospeh Baldizzi

Hi All...

A couple of you had questions, so I thought I would reply. First off

though...this is Faun and NOT Fran. We both have ph's, we both have last

names

that start with a B...and she used to live in FL too...it got really

confusing there for a while for many! lol

ph has not had his tonsils out. At the time of diagnosis, the dr. said

the risk of a surgery that may not work was not worth it...to give the

prednisone a try and go from there. The Prednisone has been a true staple of

our

lives. It goes everywhere with us. Believe me, I was SO hesitant to use it,

but after ph hit 106.3, I was all for it. It has worked VERY well for us

for now. ph takes his 6 tablets, on his own because he feels THAT bad.

He says it feels like he is on fire and burning from the inside. He does

get the headaches...and sometimes a bit of the dizziness. VERY sensitive to

noises though. He is a normal active child when fever free. His height and

weight are average...maybe a bit on the thin side. When we have an episode

and abort it, I typically keep him out of PE and the heat for a few days so he

doesn't overdo it. We too have found that stressors will coincide with an

episode. I keep Tylenol and Motrin at school for him to take as he feels

necessary. He will occasionally get the cancer sores and we use " Canka " ,

Amosan,

and " Canker Covers " . He actually functions very well at a temp of 102 or

less...above that he looks and feels pretty tired and sleeps a lot.

Here are ph's words...Tell me what a episode is like...

" It feels like your brain is hitting the edges of your skull and you get bad

headaches. Sometimes your visions goes blurry for a few seconds and then

goes back to normal. Your body gets really hot and feels like you are burning

form the inside. When I have the chills, I feel the goose bumps from on top

of my head going all the way down to my feet. My throat sometimes hurts so I

try to drink water to make it feel better. I feel very tired and like I just

want to sit on the sofa and watch tv or sleep. For the younger kids make sure

you give them the Tylenol and Motrin. The meltaways are good for young

kids. If you try to give them the steriods and they are younger than 5 or 6

they will probably throw up because the taste is really bad. I feel very badly

for the young babies with . When they go to get their blood drawn they

should use the Emla cream to numb the skin and the butterfly needles are

really good for small children because they (the clinic staff) make them (the

kids) feel better when they stick the needle in you because they can pretend

it

is flying around like a butterfly. Sometimes your legs and your bones hurt.

And when you are laying down your eyes sometimes water and it hurts to

blink. When I have an episode, I feel really badly. I like to take the

Prednisone because it makes me feel better. I don't like taking it at the same

time

though because it tastes really bad and sometimes gives me nightmares, but it

really helps me feel better. "

Faun M. Baldizzi

411 Monte Cristo Blvd.

Tierra Verde, FL 33715

727-864-6656 Home

727-463-6656 Cell

[Guest guest]

Hi Faun, reading phs statement is like talking to my own 7yr old boy! Are

his episodes regular and have you been to NIH or have a diagnosis? 's

fevers are not regular and our ID and I are going to try our 1st dose of Pred

his next febrile ep.

, S.D., CA

Growing out of and words from Jospeh Baldizzi

Hi All...

A couple of you had questions, so I thought I would reply. First off

though...this is Faun and NOT Fran. We both have ph's, we both have last

names

that start with a B...and she used to live in FL too...it got really

confusing there for a while for many! lol

ph has not had his tonsils out. At the time of diagnosis, the dr. said

the risk of a surgery that may not work was not worth it...to give the

prednisone a try and go from there. The Prednisone has been a true staple of

our

lives. It goes everywhere with us. Believe me, I was SO hesitant to use it,

but after ph hit 106.3, I was all for it. It has worked VERY well for us

for now. ph takes his 6 tablets, on his own because he feels THAT bad.

He says it feels like he is on fire and burning from the inside. He does

get the headaches...and sometimes a bit of the dizziness. VERY sensitive to

noises though. He is a normal active child when fever free. His height and

weight are average...maybe a bit on the thin side. When we have an episode

and abort it, I typically keep him out of PE and the heat for a few days so he

doesn't overdo it. We too have found that stressors will coincide with an

episode. I keep Tylenol and Motrin at school for him to take as he feels

necessary. He will occasionally get the cancer sores and we use " Canka " ,

Amosan,

and " Canker Covers " . He actually functions very well at a temp of 102 or

less...above that he looks and feels pretty tired and sleeps a lot.

Here are ph's words...Tell me what a episode is like...

" It feels like your brain is hitting the edges of your skull and you get bad

headaches. Sometimes your visions goes blurry for a few seconds and then

goes back to normal. Your body gets really hot and feels like you are burning

form the inside. When I have the chills, I feel the goose bumps from on top

of my head going all the way down to my feet. My throat sometimes hurts so I

try to drink water to make it feel better. I feel very tired and like I just

want to sit on the sofa and watch tv or sleep. For the younger kids make sure

you give them the Tylenol and Motrin. The meltaways are good for young

kids. If you try to give them the steriods and they are younger than 5 or 6

they will probably throw up because the taste is really bad. I feel very badly

for the young babies with . When they go to get their blood drawn they

should use the Emla cream to numb the skin and the butterfly needles are

really good for small children because they (the clinic staff) make them (the

kids) feel better when they stick the needle in you because they can pretend

it

is flying around like a butterfly. Sometimes your legs and your bones hurt.

And when you are laying down your eyes sometimes water and it hurts to

blink. When I have an episode, I feel really badly. I like to take the

Prednisone because it makes me feel better. I don't like taking it at the same

time

though because it tastes really bad and sometimes gives me nightmares, but it

really helps me feel better. "

Faun M. Baldizzi

411 Monte Cristo Blvd.

Tierra Verde, FL 33715

727-864-6656 Home

727-463-6656 Cell

[Guest guest]

Hi Faun, reading phs statement is like talking to my own 7yr old boy! Are

his episodes regular and have you been to NIH or have a diagnosis? 's

fevers are not regular and our ID and I are going to try our 1st dose of Pred

his next febrile ep.

, S.D., CA

Growing out of and words from Jospeh Baldizzi

Hi All...

A couple of you had questions, so I thought I would reply. First off

though...this is Faun and NOT Fran. We both have ph's, we both have last

names

that start with a B...and she used to live in FL too...it got really

confusing there for a while for many! lol

ph has not had his tonsils out. At the time of diagnosis, the dr. said

the risk of a surgery that may not work was not worth it...to give the

prednisone a try and go from there. The Prednisone has been a true staple of

our

lives. It goes everywhere with us. Believe me, I was SO hesitant to use it,

but after ph hit 106.3, I was all for it. It has worked VERY well for us

for now. ph takes his 6 tablets, on his own because he feels THAT bad.

He says it feels like he is on fire and burning from the inside. He does

get the headaches...and sometimes a bit of the dizziness. VERY sensitive to

noises though. He is a normal active child when fever free. His height and

weight are average...maybe a bit on the thin side. When we have an episode

and abort it, I typically keep him out of PE and the heat for a few days so he

doesn't overdo it. We too have found that stressors will coincide with an

episode. I keep Tylenol and Motrin at school for him to take as he feels

necessary. He will occasionally get the cancer sores and we use " Canka " ,

Amosan,

and " Canker Covers " . He actually functions very well at a temp of 102 or

less...above that he looks and feels pretty tired and sleeps a lot.

Here are ph's words...Tell me what a episode is like...

" It feels like your brain is hitting the edges of your skull and you get bad

headaches. Sometimes your visions goes blurry for a few seconds and then

goes back to normal. Your body gets really hot and feels like you are burning

form the inside. When I have the chills, I feel the goose bumps from on top

of my head going all the way down to my feet. My throat sometimes hurts so I

try to drink water to make it feel better. I feel very tired and like I just

want to sit on the sofa and watch tv or sleep. For the younger kids make sure

you give them the Tylenol and Motrin. The meltaways are good for young

kids. If you try to give them the steriods and they are younger than 5 or 6

they will probably throw up because the taste is really bad. I feel very badly

for the young babies with . When they go to get their blood drawn they

should use the Emla cream to numb the skin and the butterfly needles are

really good for small children because they (the clinic staff) make them (the

kids) feel better when they stick the needle in you because they can pretend

it

is flying around like a butterfly. Sometimes your legs and your bones hurt.

And when you are laying down your eyes sometimes water and it hurts to

blink. When I have an episode, I feel really badly. I like to take the

Prednisone because it makes me feel better. I don't like taking it at the same

time

though because it tastes really bad and sometimes gives me nightmares, but it

really helps me feel better. "

Faun M. Baldizzi

411 Monte Cristo Blvd.

Tierra Verde, FL 33715

727-864-6656 Home

727-463-6656 Cell

[Guest guest]

Hi Faun, reading phs statement is like talking to my own 7yr old boy! Are

his episodes regular and have you been to NIH or have a diagnosis? 's

fevers are not regular and our ID and I are going to try our 1st dose of Pred

his next febrile ep.

, S.D., CA

Growing out of and words from Jospeh Baldizzi

Hi All...

A couple of you had questions, so I thought I would reply. First off

though...this is Faun and NOT Fran. We both have ph's, we both have last

names

that start with a B...and she used to live in FL too...it got really

confusing there for a while for many! lol

ph has not had his tonsils out. At the time of diagnosis, the dr. said

the risk of a surgery that may not work was not worth it...to give the

prednisone a try and go from there. The Prednisone has been a true staple of

our

lives. It goes everywhere with us. Believe me, I was SO hesitant to use it,

but after ph hit 106.3, I was all for it. It has worked VERY well for us

for now. ph takes his 6 tablets, on his own because he feels THAT bad.

He says it feels like he is on fire and burning from the inside. He does

get the headaches...and sometimes a bit of the dizziness. VERY sensitive to

noises though. He is a normal active child when fever free. His height and

weight are average...maybe a bit on the thin side. When we have an episode

and abort it, I typically keep him out of PE and the heat for a few days so he

doesn't overdo it. We too have found that stressors will coincide with an

episode. I keep Tylenol and Motrin at school for him to take as he feels

necessary. He will occasionally get the cancer sores and we use " Canka " ,

Amosan,

and " Canker Covers " . He actually functions very well at a temp of 102 or

less...above that he looks and feels pretty tired and sleeps a lot.

Here are ph's words...Tell me what a episode is like...

" It feels like your brain is hitting the edges of your skull and you get bad

headaches. Sometimes your visions goes blurry for a few seconds and then

goes back to normal. Your body gets really hot and feels like you are burning

form the inside. When I have the chills, I feel the goose bumps from on top

of my head going all the way down to my feet. My throat sometimes hurts so I

try to drink water to make it feel better. I feel very tired and like I just

want to sit on the sofa and watch tv or sleep. For the younger kids make sure

you give them the Tylenol and Motrin. The meltaways are good for young

kids. If you try to give them the steriods and they are younger than 5 or 6

they will probably throw up because the taste is really bad. I feel very badly

for the young babies with . When they go to get their blood drawn they

should use the Emla cream to numb the skin and the butterfly needles are

really good for small children because they (the clinic staff) make them (the

kids) feel better when they stick the needle in you because they can pretend

it

is flying around like a butterfly. Sometimes your legs and your bones hurt.

And when you are laying down your eyes sometimes water and it hurts to

blink. When I have an episode, I feel really badly. I like to take the

Prednisone because it makes me feel better. I don't like taking it at the same

time

though because it tastes really bad and sometimes gives me nightmares, but it

really helps me feel better. "

Faun M. Baldizzi

411 Monte Cristo Blvd.

Tierra Verde, FL 33715

727-864-6656 Home

727-463-6656 Cell

[Guest guest]

Hi Faun, reading phs statement is like talking to my own 7yr old boy! Are

his episodes regular and have you been to NIH or have a diagnosis? 's

fevers are not regular and our ID and I are going to try our 1st dose of Pred

his next febrile ep.

, S.D., CA

Growing out of and words from Jospeh Baldizzi

Hi All...

A couple of you had questions, so I thought I would reply. First off

though...this is Faun and NOT Fran. We both have ph's, we both have last

names

that start with a B...and she used to live in FL too...it got really

confusing there for a while for many! lol

ph has not had his tonsils out. At the time of diagnosis, the dr. said

the risk of a surgery that may not work was not worth it...to give the

prednisone a try and go from there. The Prednisone has been a true staple of

our

lives. It goes everywhere with us. Believe me, I was SO hesitant to use it,

but after ph hit 106.3, I was all for it. It has worked VERY well for us

for now. ph takes his 6 tablets, on his own because he feels THAT bad.

He says it feels like he is on fire and burning from the inside. He does

get the headaches...and sometimes a bit of the dizziness. VERY sensitive to

noises though. He is a normal active child when fever free. His height and

weight are average...maybe a bit on the thin side. When we have an episode

and abort it, I typically keep him out of PE and the heat for a few days so he

doesn't overdo it. We too have found that stressors will coincide with an

episode. I keep Tylenol and Motrin at school for him to take as he feels

necessary. He will occasionally get the cancer sores and we use " Canka " ,

Amosan,

and " Canker Covers " . He actually functions very well at a temp of 102 or

less...above that he looks and feels pretty tired and sleeps a lot.

Here are ph's words...Tell me what a episode is like...

" It feels like your brain is hitting the edges of your skull and you get bad

headaches. Sometimes your visions goes blurry for a few seconds and then

goes back to normal. Your body gets really hot and feels like you are burning

form the inside. When I have the chills, I feel the goose bumps from on top

of my head going all the way down to my feet. My throat sometimes hurts so I

try to drink water to make it feel better. I feel very tired and like I just

want to sit on the sofa and watch tv or sleep. For the younger kids make sure

you give them the Tylenol and Motrin. The meltaways are good for young

kids. If you try to give them the steriods and they are younger than 5 or 6

they will probably throw up because the taste is really bad. I feel very badly

for the young babies with . When they go to get their blood drawn they

should use the Emla cream to numb the skin and the butterfly needles are

really good for small children because they (the clinic staff) make them (the

kids) feel better when they stick the needle in you because they can pretend

it

is flying around like a butterfly. Sometimes your legs and your bones hurt.

And when you are laying down your eyes sometimes water and it hurts to

blink. When I have an episode, I feel really badly. I like to take the

Prednisone because it makes me feel better. I don't like taking it at the same

time

though because it tastes really bad and sometimes gives me nightmares, but it

really helps me feel better. "

Faun M. Baldizzi

411 Monte Cristo Blvd.

Tierra Verde, FL 33715

727-864-6656 Home

727-463-6656 Cell

[Guest guest]

Hi Faun, reading phs statement is like talking to my own 7yr old boy! Are

his episodes regular and have you been to NIH or have a diagnosis? 's

fevers are not regular and our ID and I are going to try our 1st dose of Pred

his next febrile ep.

, S.D., CA

Growing out of and words from Jospeh Baldizzi

Hi All...

A couple of you had questions, so I thought I would reply. First off

though...this is Faun and NOT Fran. We both have ph's, we both have last

names

that start with a B...and she used to live in FL too...it got really

confusing there for a while for many! lol

ph has not had his tonsils out. At the time of diagnosis, the dr. said

the risk of a surgery that may not work was not worth it...to give the

prednisone a try and go from there. The Prednisone has been a true staple of

our

lives. It goes everywhere with us. Believe me, I was SO hesitant to use it,

but after ph hit 106.3, I was all for it. It has worked VERY well for us

for now. ph takes his 6 tablets, on his own because he feels THAT bad.

He says it feels like he is on fire and burning from the inside. He does

get the headaches...and sometimes a bit of the dizziness. VERY sensitive to

noises though. He is a normal active child when fever free. His height and

weight are average...maybe a bit on the thin side. When we have an episode

and abort it, I typically keep him out of PE and the heat for a few days so he

doesn't overdo it. We too have found that stressors will coincide with an

episode. I keep Tylenol and Motrin at school for him to take as he feels

necessary. He will occasionally get the cancer sores and we use " Canka " ,

Amosan,

and " Canker Covers " . He actually functions very well at a temp of 102 or

less...above that he looks and feels pretty tired and sleeps a lot.

Here are ph's words...Tell me what a episode is like...

" It feels like your brain is hitting the edges of your skull and you get bad

headaches. Sometimes your visions goes blurry for a few seconds and then

goes back to normal. Your body gets really hot and feels like you are burning

form the inside. When I have the chills, I feel the goose bumps from on top

of my head going all the way down to my feet. My throat sometimes hurts so I

try to drink water to make it feel better. I feel very tired and like I just

want to sit on the sofa and watch tv or sleep. For the younger kids make sure

you give them the Tylenol and Motrin. The meltaways are good for young

kids. If you try to give them the steriods and they are younger than 5 or 6

they will probably throw up because the taste is really bad. I feel very badly

for the young babies with . When they go to get their blood drawn they

should use the Emla cream to numb the skin and the butterfly needles are

really good for small children because they (the clinic staff) make them (the

kids) feel better when they stick the needle in you because they can pretend

it

is flying around like a butterfly. Sometimes your legs and your bones hurt.

And when you are laying down your eyes sometimes water and it hurts to

blink. When I have an episode, I feel really badly. I like to take the

Prednisone because it makes me feel better. I don't like taking it at the same

time

though because it tastes really bad and sometimes gives me nightmares, but it

really helps me feel better. "

Faun M. Baldizzi

411 Monte Cristo Blvd.

Tierra Verde, FL 33715

727-864-6656 Home

727-463-6656 Cell

[Guest guest]

Hi Faun, reading phs statement is like talking to my own 7yr old boy! Are

his episodes regular and have you been to NIH or have a diagnosis? 's

fevers are not regular and our ID and I are going to try our 1st dose of Pred

his next febrile ep.

, S.D., CA

Growing out of and words from Jospeh Baldizzi

Hi All...

A couple of you had questions, so I thought I would reply. First off

though...this is Faun and NOT Fran. We both have ph's, we both have last

names

that start with a B...and she used to live in FL too...it got really

confusing there for a while for many! lol

ph has not had his tonsils out. At the time of diagnosis, the dr. said

the risk of a surgery that may not work was not worth it...to give the

prednisone a try and go from there. The Prednisone has been a true staple of

our

lives. It goes everywhere with us. Believe me, I was SO hesitant to use it,

but after ph hit 106.3, I was all for it. It has worked VERY well for us

for now. ph takes his 6 tablets, on his own because he feels THAT bad.

He says it feels like he is on fire and burning from the inside. He does

get the headaches...and sometimes a bit of the dizziness. VERY sensitive to

noises though. He is a normal active child when fever free. His height and

weight are average...maybe a bit on the thin side. When we have an episode

and abort it, I typically keep him out of PE and the heat for a few days so he

doesn't overdo it. We too have found that stressors will coincide with an

episode. I keep Tylenol and Motrin at school for him to take as he feels

necessary. He will occasionally get the cancer sores and we use " Canka " ,

Amosan,

and " Canker Covers " . He actually functions very well at a temp of 102 or

less...above that he looks and feels pretty tired and sleeps a lot.

Here are ph's words...Tell me what a episode is like...

" It feels like your brain is hitting the edges of your skull and you get bad

headaches. Sometimes your visions goes blurry for a few seconds and then

goes back to normal. Your body gets really hot and feels like you are burning

form the inside. When I have the chills, I feel the goose bumps from on top

of my head going all the way down to my feet. My throat sometimes hurts so I

try to drink water to make it feel better. I feel very tired and like I just

want to sit on the sofa and watch tv or sleep. For the younger kids make sure

you give them the Tylenol and Motrin. The meltaways are good for young

kids. If you try to give them the steriods and they are younger than 5 or 6

they will probably throw up because the taste is really bad. I feel very badly

for the young babies with . When they go to get their blood drawn they

should use the Emla cream to numb the skin and the butterfly needles are

really good for small children because they (the clinic staff) make them (the

kids) feel better when they stick the needle in you because they can pretend

it

is flying around like a butterfly. Sometimes your legs and your bones hurt.

And when you are laying down your eyes sometimes water and it hurts to

blink. When I have an episode, I feel really badly. I like to take the

Prednisone because it makes me feel better. I don't like taking it at the same

time

though because it tastes really bad and sometimes gives me nightmares, but it

really helps me feel better. "

Faun M. Baldizzi

411 Monte Cristo Blvd.

Tierra Verde, FL 33715

727-864-6656 Home

727-463-6656 Cell

[Guest guest]

Hi ph,

My name is and I am in 5th grade. I'v had

fevers for 6 months. I just read about how you feel

when you are sick and it is exactly like how I feel.

Where do you live. reply soon,

--- & <bgatesjr@...> wrote:

> Hi Faun, reading phs statement is like talking

> to my own 7yr old boy! Are his episodes regular and

> have you been to NIH or have a diagnosis? 's

> fevers are not regular and our ID and I are going to

> try our 1st dose of Pred his next febrile ep.

> , S.D., CA

> Growing out of and words

> from Jospeh Baldizzi

>

>

>

>

> Hi All...

>

> A couple of you had questions, so I thought I

> would reply. First off

> though...this is Faun and NOT Fran. We both have

> ph's, we both have last names

> that start with a B...and she used to live in FL

> too...it got really

> confusing there for a while for many! lol

>

> ph has not had his tonsils out. At the time of

> diagnosis, the dr. said

> the risk of a surgery that may not work was not

> worth it...to give the

> prednisone a try and go from there. The Prednisone

> has been a true staple of our

> lives. It goes everywhere with us. Believe me, I

> was SO hesitant to use it,

> but after ph hit 106.3, I was all for it. It

> has worked VERY well for us

> for now. ph takes his 6 tablets, on his own

> because he feels THAT bad.

> He says it feels like he is on fire and burning

> from the inside. He does

> get the headaches...and sometimes a bit of the

> dizziness. VERY sensitive to

> noises though. He is a normal active child when

> fever free. His height and

> weight are average...maybe a bit on the thin side.

> When we have an episode

> and abort it, I typically keep him out of PE and

> the heat for a few days so he

> doesn't overdo it. We too have found that

> stressors will coincide with an

> episode. I keep Tylenol and Motrin at school for

> him to take as he feels

> necessary. He will occasionally get the cancer

> sores and we use " Canka " , Amosan,

> and " Canker Covers " . He actually functions very

> well at a temp of 102 or

> less...above that he looks and feels pretty tired

> and sleeps a lot.

>

> Here are ph's words...Tell me what a

> episode is like...

> " It feels like your brain is hitting the edges of

> your skull and you get bad

> headaches. Sometimes your visions goes blurry for

> a few seconds and then

> goes back to normal. Your body gets really hot and

> feels like you are burning

> form the inside. When I have the chills, I feel

> the goose bumps from on top

> of my head going all the way down to my feet. My

> throat sometimes hurts so I

> try to drink water to make it feel better. I feel

> very tired and like I just

> want to sit on the sofa and watch tv or sleep. For

> the younger kids make sure

> you give them the Tylenol and Motrin. The

> meltaways are good for young

> kids. If you try to give them the steriods and

> they are younger than 5 or 6

> they will probably throw up because the taste is

> really bad. I feel very badly

> for the young babies with . When they go to

> get their blood drawn they

> should use the Emla cream to numb the skin and the

> butterfly needles are

> really good for small children because they (the

> clinic staff) make them (the

> kids) feel better when they stick the needle in

> you because they can pretend it

> is flying around like a butterfly. Sometimes your

> legs and your bones hurt.

> And when you are laying down your eyes sometimes

> water and it hurts to

> blink. When I have an episode, I feel really

> badly. I like to take the

> Prednisone because it makes me feel better. I

> don't like taking it at the same time

> though because it tastes really bad and sometimes

> gives me nightmares, but it

> really helps me feel better. "

>

>

> Faun M. Baldizzi

> 411 Monte Cristo Blvd.

> Tierra Verde, FL 33715

> 727-864-6656 Home

> 727-463-6656 Cell

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hi , We live in San Diego too. We have probably seen the same

physicians. Dr. Burns ID & Dr. Albani, Rhuematology.

a is 8 & had fevered since she was months old. She was only

recently diagnosed, actually by a chance conversation between her

primary care & another primary care physician. They took her tonsils

out, a procedure that the specialist wasn't on-board with as it seemed

like they wanted to find something odd wrong with her. They believed

she had HIDs. Her IgD is really high. (I actually felt he seemed a

little excited at the prospect, as he said he had never had a patient

with this diagnosis) We did it anyway & have been fever free since. I

am so glad we didn't listen.

Jane Flanagan-Brown

Jane Flanagan-Brown

Contract Manager

Phone: 619-278-6169

Fax: 619-278-6568

[Guest guest]

Hi,

I'm wondering if ph Baldizzi or any other older children could

suggest some foods that feel good to eat when fevering? My 2 year-

old " " is too young to tell me. I thought that ph Baldizzi's

decription of below was very helpful. It gave me insight on how

my baby is feeling during an episode. I teared up when I read it! Any

suggestions about foods that feel good while fevering would be

appreciated! Thanks!

Amy- Mom to -age 2

>

> > Hi Faun, reading phs statement is like talking

> > to my own 7yr old boy! Are his episodes regular and

> > have you been to NIH or have a diagnosis? 's

> > fevers are not regular and our ID and I are going to

> > try our 1st dose of Pred his next febrile ep.

> > , S.D., CA

> > Growing out of and words

> > from Jospeh Baldizzi

> >

> >

> >

> >

> > Hi All...

> >

> > A couple of you had questions, so I thought I

> > would reply. First off

> > though...this is Faun and NOT Fran. We both have

> > ph's, we both have last names

> > that start with a B...and she used to live in FL

> > too...it got really

> > confusing there for a while for many! lol

> >

> > ph has not had his tonsils out. At the time of

> > diagnosis, the dr. said

> > the risk of a surgery that may not work was not

> > worth it...to give the

> > prednisone a try and go from there. The Prednisone

> > has been a true staple of our

> > lives. It goes everywhere with us. Believe me, I

> > was SO hesitant to use it,

> > but after ph hit 106.3, I was all for it. It

> > has worked VERY well for us

> > for now. ph takes his 6 tablets, on his own

> > because he feels THAT bad.

> > He says it feels like he is on fire and burning

> > from the inside. He does

> > get the headaches...and sometimes a bit of the

> > dizziness. VERY sensitive to

> > noises though. He is a normal active child when

> > fever free. His height and

> > weight are average...maybe a bit on the thin side.

> > When we have an episode

> > and abort it, I typically keep him out of PE and

> > the heat for a few days so he

> > doesn't overdo it. We too have found that

> > stressors will coincide with an

> > episode. I keep Tylenol and Motrin at school for

> > him to take as he feels

> > necessary. He will occasionally get the cancer

> > sores and we use " Canka " , Amosan,

> > and " Canker Covers " . He actually functions very

> > well at a temp of 102 or

> > less...above that he looks and feels pretty tired

> > and sleeps a lot.

> >

> > Here are ph's words...Tell me what a

> > episode is like...

> > " It feels like your brain is hitting the edges of

> > your skull and you get bad

> > headaches. Sometimes your visions goes blurry for

> > a few seconds and then

> > goes back to normal. Your body gets really hot and

> > feels like you are burning

> > form the inside. When I have the chills, I feel

> > the goose bumps from on top

> > of my head going all the way down to my feet. My

> > throat sometimes hurts so I

> > try to drink water to make it feel better. I feel

> > very tired and like I just

> > want to sit on the sofa and watch tv or sleep. For

> > the younger kids make sure

> > you give them the Tylenol and Motrin. The

> > meltaways are good for young

> > kids. If you try to give them the steriods and

> > they are younger than 5 or 6

> > they will probably throw up because the taste is

> > really bad. I feel very badly

> > for the young babies with . When they go to

> > get their blood drawn they

> > should use the Emla cream to numb the skin and the

> > butterfly needles are

> > really good for small children because they (the

> > clinic staff) make them (the

> > kids) feel better when they stick the needle in

> > you because they can pretend it

> > is flying around like a butterfly. Sometimes your

> > legs and your bones hurt.

> > And when you are laying down your eyes sometimes

> > water and it hurts to

> > blink. When I have an episode, I feel really

> > badly. I like to take the

> > Prednisone because it makes me feel better. I

> > don't like taking it at the same time

> > though because it tastes really bad and sometimes

> > gives me nightmares, but it

> > really helps me feel better. "

> >

> >

> > Faun M. Baldizzi

> > 411 Monte Cristo Blvd.

> > Tierra Verde, FL 33715

> > 727-864-6656 Home

> > 727-463-6656 Cell

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

My 12 year old said he likes broth, ice cream and Taco Bell. But mostly he

doesn't have an appetite during an episode because he is so nauseated.

Amy Scala <amersturpy@...> wrote: Hi,

I'm wondering if ph Baldizzi or any other older children could

suggest some foods that feel good to eat when fevering? My 2 year-

old " " is too young to tell me. I thought that ph Baldizzi's

decription of below was very helpful. It gave me insight on how

my baby is feeling during an episode. I teared up when I read it! Any

suggestions about foods that feel good while fevering would be

appreciated! Thanks!

Amy- Mom to -age 2

>

> > Hi Faun, reading phs statement is like talking

> > to my own 7yr old boy! Are his episodes regular and

> > have you been to NIH or have a diagnosis? 's

> > fevers are not regular and our ID and I are going to

> > try our 1st dose of Pred his next febrile ep.

> > , S.D., CA

> > Growing out of and words

> > from Jospeh Baldizzi

> >

> >

> >

> >

> > Hi All...

> >

> > A couple of you had questions, so I thought I

> > would reply. First off

> > though...this is Faun and NOT Fran. We both have

> > ph's, we both have last names

> > that start with a B...and she used to live in FL

> > too...it got really

> > confusing there for a while for many! lol

> >

> > ph has not had his tonsils out. At the time of

> > diagnosis, the dr. said

> > the risk of a surgery that may not work was not

> > worth it...to give the

> > prednisone a try and go from there. The Prednisone

> > has been a true staple of our

> > lives. It goes everywhere with us. Believe me, I

> > was SO hesitant to use it,

> > but after ph hit 106.3, I was all for it. It

> > has worked VERY well for us

> > for now. ph takes his 6 tablets, on his own

> > because he feels THAT bad.

> > He says it feels like he is on fire and burning

> > from the inside. He does

> > get the headaches...and sometimes a bit of the

> > dizziness. VERY sensitive to

> > noises though. He is a normal active child when

> > fever free. His height and

> > weight are average...maybe a bit on the thin side.

> > When we have an episode

> > and abort it, I typically keep him out of PE and

> > the heat for a few days so he

> > doesn't overdo it. We too have found that

> > stressors will coincide with an

> > episode. I keep Tylenol and Motrin at school for

> > him to take as he feels

> > necessary. He will occasionally get the cancer

> > sores and we use " Canka " , Amosan,

> > and " Canker Covers " . He actually functions very

> > well at a temp of 102 or

> > less...above that he looks and feels pretty tired

> > and sleeps a lot.

> >

> > Here are ph's words...Tell me what a

> > episode is like...

> > " It feels like your brain is hitting the edges of

> > your skull and you get bad

> > headaches. Sometimes your visions goes blurry for

> > a few seconds and then

> > goes back to normal. Your body gets really hot and

> > feels like you are burning

> > form the inside. When I have the chills, I feel

> > the goose bumps from on top

> > of my head going all the way down to my feet. My

> > throat sometimes hurts so I

> > try to drink water to make it feel better. I feel

> > very tired and like I just

> > want to sit on the sofa and watch tv or sleep. For

> > the younger kids make sure

> > you give them the Tylenol and Motrin. The

> > meltaways are good for young

> > kids. If you try to give them the steriods and

> > they are younger than 5 or 6

> > they will probably throw up because the taste is

> > really bad. I feel very badly

> > for the young babies with . When they go to

> > get their blood drawn they

> > should use the Emla cream to numb the skin and the

> > butterfly needles are

> > really good for small children because they (the

> > clinic staff) make them (the

> > kids) feel better when they stick the needle in

> > you because they can pretend it

> > is flying around like a butterfly. Sometimes your

> > legs and your bones hurt.

> > And when you are laying down your eyes sometimes

> > water and it hurts to

> > blink. When I have an episode, I feel really

> > badly. I like to take the

> > Prednisone because it makes me feel better. I

> > don't like taking it at the same time

> > though because it tastes really bad and sometimes

> > gives me nightmares, but it

> > really helps me feel better. "

> >

> >

> > Faun M. Baldizzi

> > 411 Monte Cristo Blvd.

> > Tierra Verde, FL 33715

> > 727-864-6656 Home

> > 727-463-6656 Cell

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I'm 22 now and have suffered from a Periodic Fever Syndrome my entire life.

During my fevers I'm a popcyle fanatic! I know this won't give much nutrition

but it always makes me feel better and I have found by buying the natural juice

kind I can help myself stay hydrated. I even sometimes freeze my own gatorade

or even pedilyte if I know I am getting dehydrated with my attack. I also eat

plain shaved turkey lunch meat because I rarely feel like eating anything and

know that this meat will supplement protein when I'm not too hungry. I've also

found things like crackers (plain Saltines) always taste good when I am nauseous

along with my fever. For sure ignore the people who say, " feed a cold, starve a

fever " because this is only relates to fevers from infections. Many people

don't understand Periodic Fevers, even a lot of doctors, so finding foods that

seem to soothe him would be best in my opinion. As he gets older he will

probably find his own foods that comfort him during attacks but for now you have

to try and read his mind.

Here is an interesting link on fever nutrition:

http://www.bawarchi.com/health/fever.html#fever1

Kelli

@...: amersturpy@...: Mon, 20 Aug 2007

02:06:30 +0000Subject: Re: Growing out of and words from Jospeh

Baldizzi

Hi,I'm wondering if ph Baldizzi or any other older children could suggest

some foods that feel good to eat when fevering? My 2 year-old " " is too

young to tell me. I thought that ph Baldizzi's decription of below was

very helpful. It gave me insight on how my baby is feeling during an episode. I

teared up when I read it! Any suggestions about foods that feel good while

fevering would be appreciated! Thanks!Amy- Mom to -age 2> >

> Hi Faun, reading phs statement is like talking> > to my own 7yr old boy!

Are his episodes regular and> > have you been to NIH or have a diagnosis?

's> > fevers are not regular and our ID and I are going to> > try our 1st

dose of Pred his next febrile ep. > > , S.D., CA> > ----- Original

Message ----- > > From: fauner1@... > > > > Sent:

Monday, August 28, 2006 10:06 AM> > Subject: Growing out of and

words> > from Jospeh Baldizzi> > > > > > > > > > Hi All...> > > > A couple of

you had questions, so I thought I> > would reply. First off > > though...this is

Faun and NOT Fran. We both have> > ph's, we both have last names > > that

start with a B...and she used to live in FL> > too...it got really > > confusing

there for a while for many! lol> > > > ph has not had his tonsils out. At

the time of> > diagnosis, the dr. said > > the risk of a surgery that may not

work was not> > worth it...to give the > > prednisone a try and go from there.

The Prednisone> > has been a true staple of our > > lives. It goes everywhere

with us. Believe me, I> > was SO hesitant to use it, > > but after ph hit

106.3, I was all for it. It> > has worked VERY well for us > > for now. ph

takes his 6 tablets, on his own> > because he feels THAT bad. > > He says it

feels like he is on fire and burning> > from the inside. He does > > get the

headaches...and sometimes a bit of the> > dizziness. VERY sensitive to > >

noises though. He is a normal active child when> > fever free. His height and >

> weight are average...maybe a bit on the thin side.> > When we have an episode

> > and abort it, I typically keep him out of PE and> > the heat for a few days

so he > > doesn't overdo it. We too have found that> > stressors will coincide

with an > > episode. I keep Tylenol and Motrin at school for> > him to take as

he feels > > necessary. He will occasionally get the cancer> > sores and we use

" Canka " , Amosan, > > and " Canker Covers " . He actually functions very> > well at

a temp of 102 or > > less...above that he looks and feels pretty tired> > and

sleeps a lot.> > > > Here are ph's words...Tell me what a > > episode

is like...> > " It feels like your brain is hitting the edges of> > your skull

and you get bad > > headaches. Sometimes your visions goes blurry for> > a few

seconds and then > > goes back to normal. Your body gets really hot and> > feels

like you are burning > > form the inside. When I have the chills, I feel> > the

goose bumps from on top > > of my head going all the way down to my feet. My> >

throat sometimes hurts so I > > try to drink water to make it feel better. I

feel> > very tired and like I just > > want to sit on the sofa and watch tv or

sleep. For> > the younger kids make sure > > you give them the Tylenol and

Motrin. The> > meltaways are good for young > > kids. If you try to give them

the steriods and> > they are younger than 5 or 6 > > they will probably throw up

because the taste is> > really bad. I feel very badly > > for the young babies

with . When they go to> > get their blood drawn they > > should use the

Emla cream to numb the skin and the> > butterfly needles are > > really good for

small children because they (the> > clinic staff) make them (the > > kids) feel

better when they stick the needle in> > you because they can pretend it > > is

flying around like a butterfly. Sometimes your> > legs and your bones hurt. > >

And when you are laying down your eyes sometimes> > water and it hurts to > >

blink. When I have an episode, I feel really> > badly. I like to take the > >

Prednisone because it makes me feel better. I> > don't like taking it at the

same time > > though because it tastes really bad and sometimes> > gives me

nightmares, but it > > really helps me feel better. " > > > > > > Faun M.

Baldizzi> > 411 Monte Cristo Blvd.> > Tierra Verde, FL 33715> > 727-864-6656

Home> > 727-463-6656 Cell> > > > [Non-text portions of this message have been> >

removed]> > > > > > > > > > > > [Non-text portions of this message have been> >

removed]> > > > > > > __________________________________________________> Do You

?> Tired of spam? has the best spam protection around >

http://mail.>

_________________________________________________________________

Messenger Café — open for fun 24/7. Hot games, cool activities served daily.

Visit now.

http://cafemessenger.com?ocid=TXT_TAGLM_AugWLtagline

[Guest guest]

Kelli,

It is so wonderful to hear your thoughts. My four year old loves

popsicles too when he is fevering. I, as I know many other parents

of small children with periodic fevers, would be so interested to

hear what the episodes of fevers feel like to you (like ph

described his.) I remember when his mother sent that note out and

how touching and helpful it was to let me know how my own little one

was feeling.

I have heard a couple of you say you get nauseated, which is

something my little boy hasn't been able to communicate to me. He

just moans and feels so bad, but I don't know what feels bad or how

bad. I know there is little I can do to comfort him, but what kinds

of other things make you feel better? A dark room, TV, quiet?

You are a blessing to us who need a link to these babies feelings.

You are in our prayers.

Pam Mattox

lin, Tennessee

mom to - (4 years old, and periodic fevers since 8 months)

and two little sisters

> > > Hi Faun,

reading phs statement is like talking> > to my own 7yr old boy!

Are his episodes regular and> > have you been to NIH or have a

diagnosis? 's> > fevers are not regular and our ID and I are

going to> > try our 1st dose of Pred his next febrile ep. > >

, S.D., CA> > Growing out of and words> >

from Jospeh Baldizzi> > > > > > > > > > Hi All...> > > > A couple of

you had questions, so I thought I> > would reply. First off > >

though...this is Faun and NOT Fran. We both have> > ph's, we

both have last names > > that start with a B...and she used to live

in FL> > too...it got really > > confusing there for a while for

many! lol> > > > ph has not had his tonsils out. At the time of>

> diagnosis, the dr. said > > the risk of a surgery that may not

work was not> > worth it...to give the > > prednisone a try and go

from there. The Prednisone> > has been a true staple of our > >

lives. It goes everywhere with us. Believe me, I> > was SO hesitant

to use it, > > but after ph hit 106.3, I was all for it. It> >

has worked VERY well for us > > for now. ph takes his 6 tablets,

on his own> > because he feels THAT bad. > > He says it feels like

he is on fire and burning> > from the inside. He does > > get the

headaches...and sometimes a bit of the> > dizziness. VERY sensitive

to > > noises though. He is a normal active child when> > fever

free. His height and > > weight are average...maybe a bit on the

thin side.> > When we have an episode > > and abort it, I typically

keep him out of PE and> > the heat for a few days so he > > doesn't

overdo it. We too have found that> > stressors will coincide with an

> > episode. I keep Tylenol and Motrin at school for> > him to take

as he feels > > necessary. He will occasionally get the cancer> >

sores and we use " Canka " , Amosan, > > and " Canker Covers " . He

actually functions very> > well at a temp of 102 or > > less...above

that he looks and feels pretty tired> > and sleeps a lot.> > > >

Here are ph's words...Tell me what a > > episode is

like...> > " It feels like your brain is hitting the edges of> > your

skull and you get bad > > headaches. Sometimes your visions goes

blurry for> > a few seconds and then > > goes back to normal. Your

body gets really hot and> > feels like you are burning > > form the

inside. When I have the chills, I feel> > the goose bumps from on

top > > of my head going all the way down to my feet. My> > throat

sometimes hurts so I > > try to drink water to make it feel better.

I feel> > very tired and like I just > > want to sit on the sofa and

watch tv or sleep. For> > the younger kids make sure > > you give

them the Tylenol and Motrin. The> > meltaways are good for young > >

kids. If you try to give them the steriods and> > they are younger

than 5 or 6 > > they will probably throw up because the taste is> >

really bad. I feel very badly > > for the young babies with .

When they go to> > get their blood drawn they > > should use the

Emla cream to numb the skin and the> > butterfly needles are > >

really good for small children because they (the> > clinic staff)

make them (the > > kids) feel better when they stick the needle in>

> you because they can pretend it > > is flying around like a

butterfly. Sometimes your> > legs and your bones hurt. > > And when

you are laying down your eyes sometimes> > water and it hurts to > >

blink. When I have an episode, I feel really> > badly. I like to

take the > > Prednisone because it makes me feel better. I> > don't

like taking it at the same time > > though because it tastes really

bad and sometimes> > gives me nightmares, but it > > really helps me

feel better. " > > > > > > Faun M. Baldizzi> > 411 Monte Cristo Blvd.>

> Tierra Verde, FL 33715> > 727-864-6656 Home> > 727-463-6656 Cell>

> > > [Non-text portions of this message have been> > removed]> > >

> > > > > > > > > [Non-text portions of this message have been> >

removed]> > > > > > >

__________________________________________________>

[Guest guest]

Pam,

I don't know if this would help your little one when he is sick, but my son

likes his arms gently scratched. He said it helps his stomach to not hurt so

bad. Also...he likes a cool, wet cloth on his forehead and around his neck.

This also helps with his fever.

I have to say what my big 12 year old son really wants the very most...what

makes him the most comfortable during an episode is...mommy being right next to

him.

Cheri mom to

pammattox1 <pammattox@...> wrote:

Kelli,

It is so wonderful to hear your thoughts. My four year old loves

popsicles too when he is fevering. I, as I know many other parents

of small children with periodic fevers, would be so interested to

hear what the episodes of fevers feel like to you (like ph

described his.) I remember when his mother sent that note out and

how touching and helpful it was to let me know how my own little one

was feeling.

I have heard a couple of you say you get nauseated, which is

something my little boy hasn't been able to communicate to me. He

just moans and feels so bad, but I don't know what feels bad or how

bad. I know there is little I can do to comfort him, but what kinds

of other things make you feel better? A dark room, TV, quiet?

You are a blessing to us who need a link to these babies feelings.

You are in our prayers.

Pam Mattox

lin, Tennessee

mom to - (4 years old, and periodic fevers since 8 months)

and two little sisters

> > > Hi Faun,

reading phs statement is like talking> > to my own 7yr old boy!

Are his episodes regular and> > have you been to NIH or have a

diagnosis? 's> > fevers are not regular and our ID and I are

going to> > try our 1st dose of Pred his next febrile ep. > >

, S.D., CA> > Growing out of and words> >

from Jospeh Baldizzi> > > > > > > > > > Hi All...> > > > A couple of

you had questions, so I thought I> > would reply. First off > >

though...this is Faun and NOT Fran. We both have> > ph's, we

both have last names > > that start with a B...and she used to live

in FL> > too...it got really > > confusing there for a while for

many! lol> > > > ph has not had his tonsils out. At the time of>

> diagnosis, the dr. said > > the risk of a surgery that may not

work was not> > worth it...to give the > > prednisone a try and go

from there. The Prednisone> > has been a true staple of our > >

lives. It goes everywhere with us. Believe me, I> > was SO hesitant

to use it, > > but after ph hit 106.3, I was all for it. It> >

has worked VERY well for us > > for now. ph takes his 6 tablets,

on his own> > because he feels THAT bad. > > He says it feels like

he is on fire and burning> > from the inside. He does > > get the

headaches...and sometimes a bit of the> > dizziness. VERY sensitive

to > > noises though. He is a normal active child when> > fever

free. His height and > > weight are average...maybe a bit on the

thin side.> > When we have an episode > > and abort it, I typically

keep him out of PE and> > the heat for a few days so he > > doesn't

overdo it. We too have found that> > stressors will coincide with an

> > episode. I keep Tylenol and Motrin at school for> > him to take

as he feels > > necessary. He will occasionally get the cancer> >

sores and we use " Canka " , Amosan, > > and " Canker Covers " . He

actually functions very> > well at a temp of 102 or > > less...above

that he looks and feels pretty tired> > and sleeps a lot.> > > >

Here are ph's words...Tell me what a > > episode is

like...> > " It feels like your brain is hitting the edges of> > your

skull and you get bad > > headaches. Sometimes your visions goes

blurry for> > a few seconds and then > > goes back to normal. Your

body gets really hot and> > feels like you are burning > > form the

inside. When I have the chills, I feel> > the goose bumps from on

top > > of my head going all the way down to my feet. My> > throat

sometimes hurts so I > > try to drink water to make it feel better.

I feel> > very tired and like I just > > want to sit on the sofa and

watch tv or sleep. For> > the younger kids make sure > > you give

them the Tylenol and Motrin. The> > meltaways are good for young > >

kids. If you try to give them the steriods and> > they are younger

than 5 or 6 > > they will probably throw up because the taste is> >

really bad. I feel very badly > > for the young babies with .

When they go to> > get their blood drawn they > > should use the

Emla cream to numb the skin and the> > butterfly needles are > >

really good for small children because they (the> > clinic staff)

make them (the > > kids) feel better when they stick the needle in>

> you because they can pretend it > > is flying around like a

butterfly. Sometimes your> > legs and your bones hurt. > > And when

you are laying down your eyes sometimes> > water and it hurts to > >

blink. When I have an episode, I feel really> > badly. I like to

take the > > Prednisone because it makes me feel better. I> > don't

like taking it at the same time > > though because it tastes really

bad and sometimes> > gives me nightmares, but it > > really helps me

feel better. " > > > > > > Faun M. Baldizzi> > 411 Monte Cristo Blvd.>

> Tierra Verde, FL 33715> > 727-864-6656 Home> > 727-463-6656 Cell>

> > > [Non-text portions of this message have been> > removed]> > >

> > > > > > > > > [Non-text portions of this message have been> >

removed]> > > > > > >

__________________________________________________>

[Guest guest]

Thank you for all the suggestions about comfort foods for my little one! It

really helps to hear from the older kids and adults .

Amy Scala- Mom to -age 2

Kelli Woods <lablover007@...> wrote:

I'm 22 now and have suffered from a Periodic Fever Syndrome my entire life.

During my fevers I'm a popcyle fanatic! I know this won't give much nutrition

but it always makes me feel better and I have found by buying the natural juice

kind I can help myself stay hydrated. I even sometimes freeze my own gatorade or

even pedilyte if I know I am getting dehydrated with my attack. I also eat plain

shaved turkey lunch meat because I rarely feel like eating anything and know

that this meat will supplement protein when I'm not too hungry. I've also found

things like crackers (plain Saltines) always taste good when I am nauseous along

with my fever. For sure ignore the people who say, " feed a cold, starve a fever "

because this is only relates to fevers from infections. Many people don't

understand Periodic Fevers, even a lot of doctors, so finding foods that seem to

soothe him would be best in my opinion. As he gets older he will probably find

his own foods that comfort him during

attacks but for now you have to try and read his mind.

Here is an interesting link on fever nutrition:

http://www.bawarchi.com/health/fever.html#fever1

Kelli

@...: amersturpy@...: Mon, 20 Aug 2007

02:06:30 +0000Subject: Re: Growing out of and words from Jospeh

Baldizzi

Hi,I'm wondering if ph Baldizzi or any other older children could suggest

some foods that feel good to eat when fevering? My 2 year-old " " is too

young to tell me. I thought that ph Baldizzi's decription of below was

very helpful. It gave me insight on how my baby is feeling during an episode. I

teared up when I read it! Any suggestions about foods that feel good while

fevering would be appreciated! Thanks!Amy- Mom to -age 2> > > Hi Faun, reading phs

statement is like talking> > to my own 7yr old boy! Are his episodes regular

and> > have you been to NIH or have a diagnosis? 's> > fevers are not

regular and our ID and I are going to> > try our 1st dose

of Pred his next febrile ep. > > , S.D., CA> > Growing out of and words> >

from Jospeh Baldizzi> > > > > > > > > > Hi All...> > > > A couple of you had

questions, so I thought I> > would reply. First off > > though...this is Faun

and NOT Fran. We both have> > ph's, we both have last names > > that start

with a B...and she used to live in FL> > too...it got really > > confusing there

for a while for many! lol> > > > ph has not had his tonsils out. At the time

of> > diagnosis, the dr. said > > the risk of a surgery that may not work was

not> > worth it...to give the > > prednisone a try and go from there. The

Prednisone> > has been a true staple of our > > lives. It goes everywhere with

us. Believe me, I> > was SO hesitant to use it, > > but after ph hit 106.3,

I was all for it. It> > has worked VERY well

for us > > for now. ph takes his 6 tablets, on his own> > because he feels

THAT bad. > > He says it feels like he is on fire and burning> > from the

inside. He does > > get the headaches...and sometimes a bit of the> > dizziness.

VERY sensitive to > > noises though. He is a normal active child when> > fever

free. His height and > > weight are average...maybe a bit on the thin side.> >

When we have an episode > > and abort it, I typically keep him out of PE and> >

the heat for a few days so he > > doesn't overdo it. We too have found that> >

stressors will coincide with an > > episode. I keep Tylenol and Motrin at school

for> > him to take as he feels > > necessary. He will occasionally get the

cancer> > sores and we use " Canka " , Amosan, > > and " Canker Covers " . He actually

functions very> > well at a temp of 102 or > > less...above that he looks and

feels pretty tired> > and sleeps a lot.> > > > Here are ph's words...Tell me

what a > > episode is like...> >

" It feels like your brain is hitting the edges of> > your skull and you get bad

> > headaches. Sometimes your visions goes blurry for> > a few seconds and then

> > goes back to normal. Your body gets really hot and> > feels like you are

burning > > form the inside. When I have the chills, I feel> > the goose bumps

from on top > > of my head going all the way down to my feet. My> > throat

sometimes hurts so I > > try to drink water to make it feel better. I feel> >

very tired and like I just > > want to sit on the sofa and watch tv or sleep.

For> > the younger kids make sure > > you give them the Tylenol and Motrin. The>

> meltaways are good for young > > kids. If you try to give them the steriods

and> > they are younger than 5 or 6 > > they will probably throw up because the

taste is> > really bad. I feel very badly > > for the young babies with .

When they go to> > get their blood drawn they > > should use the Emla cream to

numb the skin and the> > butterfly needles

are > > really good for small children because they (the> > clinic staff) make

them (the > > kids) feel better when they stick the needle in> > you because

they can pretend it > > is flying around like a butterfly. Sometimes your> >

legs and your bones hurt. > > And when you are laying down your eyes sometimes>

> water and it hurts to > > blink. When I have an episode, I feel really> >

badly. I like to take the > > Prednisone because it makes me feel better. I> >

don't like taking it at the same time > > though because it tastes really bad

and sometimes> > gives me nightmares, but it > > really helps me feel better. " >

> > > > > Faun M. Baldizzi> > 411 Monte Cristo Blvd.> > Tierra Verde, FL 33715>

> 727-864-6656 Home> > 727-463-6656 Cell> > > > [Non-text portions of this

message have been> > removed]> > > > > > > > > > > > [Non-text portions of this

message have been> > removed]> > > > > > >

__________________________________________________>