Re: New Member with Story, Questions

[Guest guest]

,

Welcome

If a child has or ANY of the other fever disorders.... they are NOT

contagious... They do NOT have a bacterial infection nor a virus. MOST

children do NOT get sick often EXCEPT for their fever episodes... However

one needs to be careful and not take for granted each episode as

occasionally a REAL infection sneaks in there and you would not want to miss

it!

The theory with is that their immune system is actually in

overdrive....

Please go to the website I set up... and read the intro... and then

visit the file section.... where you can read about ... (the original

article is uploaded) and read about the GENETIC fever disorders which are

sometimes missed because some doctors tend to NOT want to do the testing for

them.... (These are DNA tests done through labs such as Genedx in Baltimore)

There is also information regarding current research at NIH (National

Institute for Health)...

We tend to encourage families to push for genetic workups before accepting a

probable diagnosis as we have at least 6 members here that originally

believed their child had and later when they joined our group and

pushed for testing... found out their child had a genetic mutation....

If they come out negative... in a way we are lucky... because should

not be life long..... whereas FMF, TRAPs and HIDS are lifelong...

As for marking calendars... Yes most of us do that. Initially appears

VERY regular for MOST of the children.... but sometimes as the kids get

older... they spread out and become less regular...

Keeping a log... including onset... completion... temperature levels... and

ANY related symptom... is excellent for the specialist... and it helps

determine a specific disorder.

READ read read... browse the archives.... too!

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

,

Welcome

If a child has or ANY of the other fever disorders.... they are NOT

contagious... They do NOT have a bacterial infection nor a virus. MOST

children do NOT get sick often EXCEPT for their fever episodes... However

one needs to be careful and not take for granted each episode as

occasionally a REAL infection sneaks in there and you would not want to miss

it!

The theory with is that their immune system is actually in

overdrive....

Please go to the website I set up... and read the intro... and then

visit the file section.... where you can read about ... (the original

article is uploaded) and read about the GENETIC fever disorders which are

sometimes missed because some doctors tend to NOT want to do the testing for

them.... (These are DNA tests done through labs such as Genedx in Baltimore)

There is also information regarding current research at NIH (National

Institute for Health)...

We tend to encourage families to push for genetic workups before accepting a

probable diagnosis as we have at least 6 members here that originally

believed their child had and later when they joined our group and

pushed for testing... found out their child had a genetic mutation....

If they come out negative... in a way we are lucky... because should

not be life long..... whereas FMF, TRAPs and HIDS are lifelong...

As for marking calendars... Yes most of us do that. Initially appears

VERY regular for MOST of the children.... but sometimes as the kids get

older... they spread out and become less regular...

Keeping a log... including onset... completion... temperature levels... and

ANY related symptom... is excellent for the specialist... and it helps

determine a specific disorder.

READ read read... browse the archives.... too!

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Fran - this is a clarification question for you or anyone else who

knows...

My understanding is that or the genetic disorders causing

periodic fever are not contagious. The only exception to this is

cyclical neutropenia where a child actually contracts an illness

periodically (regularly) as the body shuts down the immune system

and drops the WBC counts. In that case an individual will see

regular fevers but also have symptoms from a variety of illnesses.

On another note, the " illnesses " that mentioned like a " cold "

seem to be sometimes used as catch-all diagnoses when the physician

doesn't know what caused the fever. I know for my daughter (now

finishing her 3rd year with ), her initial " diagnoses " for the

first 4 fevers were " virus " or possible sinus infection

or " tonsilitis " and she was given antibiotics even though we now

know she was not contagious.

Anyway, I just want to make sure that my understanding of cyclical

neutropenia in the mix of all of the these fever syndromes is

correct. Thanks!

Debbie

Mom to Gracie ( - being tested for TRAPS - 5.5)

> ,

> Welcome

>

> If a child has or ANY of the other fever disorders.... they

are NOT

> contagious... They do NOT have a bacterial infection nor a virus.

MOST

> children do NOT get sick often EXCEPT for their fever episodes...

However

> one needs to be careful and not take for granted each episode as

> occasionally a REAL infection sneaks in there and you would not

want to miss

> it!

>

> The theory with is that their immune system is actually in

> overdrive....

>

> Please go to the website I set up... and read the intro...

and then

> visit the file section.... where you can read about ... (the

original

> article is uploaded) and read about the GENETIC fever disorders

which are

> sometimes missed because some doctors tend to NOT want to do the

testing for

> them.... (These are DNA tests done through labs such as Genedx in

Baltimore)

>

> There is also information regarding current research at NIH

(National

> Institute for Health)...

>

> We tend to encourage families to push for genetic workups before

accepting a

> probable diagnosis as we have at least 6 members here that

originally

> believed their child had and later when they joined our

group and

> pushed for testing... found out their child had a genetic

mutation....

>

> If they come out negative... in a way we are lucky... because

should

> not be life long..... whereas FMF, TRAPs and HIDS are lifelong...

>

> As for marking calendars... Yes most of us do that. Initially

appears

> VERY regular for MOST of the children.... but sometimes as the

kids get

> older... they spread out and become less regular...

>

> Keeping a log... including onset... completion... temperature

levels... and

> ANY related symptom... is excellent for the specialist... and it

helps

> determine a specific disorder.

>

> READ read read... browse the archives.... too!

> God Bless,

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

>

>

>

[Guest guest]

Fran - this is a clarification question for you or anyone else who

knows...

My understanding is that or the genetic disorders causing

periodic fever are not contagious. The only exception to this is

cyclical neutropenia where a child actually contracts an illness

periodically (regularly) as the body shuts down the immune system

and drops the WBC counts. In that case an individual will see

regular fevers but also have symptoms from a variety of illnesses.

On another note, the " illnesses " that mentioned like a " cold "

seem to be sometimes used as catch-all diagnoses when the physician

doesn't know what caused the fever. I know for my daughter (now

finishing her 3rd year with ), her initial " diagnoses " for the

first 4 fevers were " virus " or possible sinus infection

or " tonsilitis " and she was given antibiotics even though we now

know she was not contagious.

Anyway, I just want to make sure that my understanding of cyclical

neutropenia in the mix of all of the these fever syndromes is

correct. Thanks!

Debbie

Mom to Gracie ( - being tested for TRAPS - 5.5)

> ,

> Welcome

>

> If a child has or ANY of the other fever disorders.... they

are NOT

> contagious... They do NOT have a bacterial infection nor a virus.

MOST

> children do NOT get sick often EXCEPT for their fever episodes...

However

> one needs to be careful and not take for granted each episode as

> occasionally a REAL infection sneaks in there and you would not

want to miss

> it!

>

> The theory with is that their immune system is actually in

> overdrive....

>

> Please go to the website I set up... and read the intro...

and then

> visit the file section.... where you can read about ... (the

original

> article is uploaded) and read about the GENETIC fever disorders

which are

> sometimes missed because some doctors tend to NOT want to do the

testing for

> them.... (These are DNA tests done through labs such as Genedx in

Baltimore)

>

> There is also information regarding current research at NIH

(National

> Institute for Health)...

>

> We tend to encourage families to push for genetic workups before

accepting a

> probable diagnosis as we have at least 6 members here that

originally

> believed their child had and later when they joined our

group and

> pushed for testing... found out their child had a genetic

mutation....

>

> If they come out negative... in a way we are lucky... because

should

> not be life long..... whereas FMF, TRAPs and HIDS are lifelong...

>

> As for marking calendars... Yes most of us do that. Initially

appears

> VERY regular for MOST of the children.... but sometimes as the

kids get

> older... they spread out and become less regular...

>

> Keeping a log... including onset... completion... temperature

levels... and

> ANY related symptom... is excellent for the specialist... and it

helps

> determine a specific disorder.

>

> READ read read... browse the archives.... too!

> God Bless,

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

>

>

>