Recently diagnosed

[Guest guest]

Hi,

The survey should have been sent to you automatically... if not for some

strange reason upon approval... then you can find it at our website under

the file section.

As for epilepsy there is no common thread. We have had one child in the

group... out of about 600 members from the start who was diagnosed with

actual epilepsy... (not febrile seizures)

God Bless... keep up the reading and research!

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Hi,

The survey should have been sent to you automatically... if not for some

strange reason upon approval... then you can find it at our website under

the file section.

As for epilepsy there is no common thread. We have had one child in the

group... out of about 600 members from the start who was diagnosed with

actual epilepsy... (not febrile seizures)

God Bless... keep up the reading and research!

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

My son, 3 ½ years old is going through the process of

finding

out weather he has . He has been getting sick every month at

somewhat regular intervals. Fever, white spots on tonsils, large

nodes. All the classic signs. Last month, we had an apt. with an

Infectious Disease doctor and that is where I learned about periodic

fever syndrome. I read on this message board about oral steroids. So

I asked our I. D. doctor if he could go ahead and have a dose of the

oral steroid ready for him. She prescribed one dose for him at the

onset of the fever. Last month he ran a 105 for 9 to 10 days. A few

days ago the fever popped up and we gave him the dose and 2 hours

later the fever was gone and we were relieved somewhat, but

didn't

know the next step was. He is fine now but I'm worried that the

oral

steroid, orapred, will cause the fever to come back more frequently.

What is everyone else's experience????

On another note, I see where there are a lot of concerned parents

about the steroid. To put thinks in perspective (at least for us), he

takes the orapred (same as used for his periodic fever) for his

asthma. He is to take 1 to 2 teaspoons by mouth twice a day for three

days. And that is for his asthma if it gets really bad. So two

teaspoons once or twice a month doesn't seem all that bad

considering

what the alternative is, a sick child for days.

Were now looking at giving him cimetidine if the doctor thinks it

will work. We know in our heart that he will have to have his tonsils

out soon. Just hope that will work.

**(was a premie, my wife's water broke at 26 weeks and he

stayed in womb with 1-2 teaspoons of fluid till 32 weeks. He was in

the NICU at NYU Med center for 3 weeks. He has been in the hospital

twice for phumonia and last month for the latest fever. They gave

him antibiotic IV for 24 hours or so till we took him home against

doctor's orders. We knew it was the fever and NO ANTIBIOTIC was

going to work. That is when we went to see the I. D. doctor. Funny

thing

is, he was sooo at small at birth but now he is the biggest/tallest

kid in his class!

> Hi,

> The survey should have been sent to you automatically... if not for

some

> strange reason upon approval... then you can find it at our website

under

> the file section.

>

> As for epilepsy there is no common thread. We have had one child in

the

> group... out of about 600 members from the start who was diagnosed

with

> actual epilepsy... (not febrile seizures)

>

> God Bless... keep up the reading and research!

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

>

>

>

[Guest guest]

My son, 3 ½ years old is going through the process of

finding

out weather he has . He has been getting sick every month at

somewhat regular intervals. Fever, white spots on tonsils, large

nodes. All the classic signs. Last month, we had an apt. with an

Infectious Disease doctor and that is where I learned about periodic

fever syndrome. I read on this message board about oral steroids. So

I asked our I. D. doctor if he could go ahead and have a dose of the

oral steroid ready for him. She prescribed one dose for him at the

onset of the fever. Last month he ran a 105 for 9 to 10 days. A few

days ago the fever popped up and we gave him the dose and 2 hours

later the fever was gone and we were relieved somewhat, but

didn't

know the next step was. He is fine now but I'm worried that the

oral

steroid, orapred, will cause the fever to come back more frequently.

What is everyone else's experience????

On another note, I see where there are a lot of concerned parents

about the steroid. To put thinks in perspective (at least for us), he

takes the orapred (same as used for his periodic fever) for his

asthma. He is to take 1 to 2 teaspoons by mouth twice a day for three

days. And that is for his asthma if it gets really bad. So two

teaspoons once or twice a month doesn't seem all that bad

considering

what the alternative is, a sick child for days.

Were now looking at giving him cimetidine if the doctor thinks it

will work. We know in our heart that he will have to have his tonsils

out soon. Just hope that will work.

**(was a premie, my wife's water broke at 26 weeks and he

stayed in womb with 1-2 teaspoons of fluid till 32 weeks. He was in

the NICU at NYU Med center for 3 weeks. He has been in the hospital

twice for phumonia and last month for the latest fever. They gave

him antibiotic IV for 24 hours or so till we took him home against

doctor's orders. We knew it was the fever and NO ANTIBIOTIC was

going to work. That is when we went to see the I. D. doctor. Funny

thing

is, he was sooo at small at birth but now he is the biggest/tallest

kid in his class!

> Hi,

> The survey should have been sent to you automatically... if not for

some

> strange reason upon approval... then you can find it at our website

under

> the file section.

>

> As for epilepsy there is no common thread. We have had one child in

the

> group... out of about 600 members from the start who was diagnosed

with

> actual epilepsy... (not febrile seizures)

>

> God Bless... keep up the reading and research!

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

>

>

>

[Guest guest]

I find it interesting that you said that your daugther's temperature

drops to around 96 when the fever breaks. My son (4.5 years old)

has and when his fever breaks (after giving Orapred) his

temperature drops to 96 to 97 degrees. Once it went to 94 and they

made me bring him right in also saying he was possibly septic. But

by the time we got to the doctor's office, it was back up to 98. I

think it regulates itself back fairly quickly. But as much as the

high temperature freaks me out, the low temperature does not sit

well with me either. Does anyone else experience this?

Just a happy note - it has been 10 weeks without a fever. That is

the longest we have gone fever-free! Knock on wood (and everything

else).

Happy Thanksgiving to Everyone! Chad, Mom to Jonah, 4.5 years

old.

>

> Hi All, I am so glad to have found you! I am the Mother of a 7

1/2 yr

> old beautiful girl, a. She has had fevers since she was at

> least 6 months. Her fevers are always >103 lasting 4-7 days, and

will

> rise into the 105-106 range if not propoerly managed. She gets

mouth

> sores, swollen glands, & joint pain. On motrin/tylenol combo she

> sometimes acts almost normal. When she was 3 I quit giving her

> medication prior to the Dr visits because they were not seeing the

same

> child I was living with. It is unbelievable to me that all of you

have

> been diagnosed so early. I have spent her life going to the Dr. &

> leaving with a diagnosis of " Non-specific Viral Illness " (NSV)

or

> they would say she had Hand foot & mouth (which is like chicken

pox,

> you should only get it once). After the 3rd or 4th time, they

just

> said it must be herpengina, an intraoral strain of the herpes

virus

> that can come with all of the other symptoms she has regularly.

At

> 4 & 1/2 she had a 105 that last 10 days. Just when they were going

to

> admit her, her fever broke. Not only did it break, it went down

to

> 93.8. They told me to come directly to the ER, when we got there

they

> said we should've called 911 as they were not sure if her body had

lost

> its ability to fight whatever infection they had been unable to

> identify, & gone septic. Luckily that was not the case. But I

have

> noticed that when her fevers breack her body temp drops to 96

degrees.

> Just when our Children's Hospital took notice that something else

wierd

> was going on with her, my husband got a new job & we had to switch

to

> kaiser. I felt like I was sarting all over again. In the past

year she

> has had 7 Strep-like infections, each time they sais oh yeah that

is

> strep & the culture was negative. She has already seen the

surgeon &

> we are waiting for the scheduling of her tonsillectomy. The ENT

> surgeon had never heard of .

> I work at a hosptial & with drs. & no-one has ever heard of it.

Our dx

> came as a fluke in a conversation between her curent Dr. & her

> colleague.

>

> Questions:

> How well did your children tolerate their immunizations?

a's

> fever was almost 20 days after the 1year old shots.

> Does anyone live in the San Diego or Southern CA area?

> Observations:

> Joint pain is not listed as a charicteristic however I see that

many of

> you have commented on it. a has it with almost every

fever, I

> would say that at 105 I would imagine every hurts, but there have

been

> times that the joint pai is so extreme, I would have to carry her

into

> the Dr.'s office.

>

> Great to meet you all,

> Thanks for listening.

> Jane in San Diego

>

[Guest guest]

I am in Murrieta. is seen at Loma

Children's right now, but our insurance is changing in

January. I am joining a medical group that goes

exclusively through Children's Hospital San Diego. I

love that place. My daughter has gone to the

Hematology department for years for a metabolic

problem. They are much better than Loma in my

opinion.

Mom to ,3 with possible or Systemic JRA

--- mejanee66 <jbrown@...> wrote:

> Hi All, I am so glad to have found you! I am the

> Mother of a 7 1/2 yr

> old beautiful girl, a. She has had fevers

> since she was at

> least 6 months. Her fevers are always >103 lasting

> 4-7 days, and will

> rise into the 105-106 range if not propoerly

> managed. She gets mouth

> sores, swollen glands, & joint pain. On

> motrin/tylenol combo she

> sometimes acts almost normal. When she was 3 I quit

> giving her

> medication prior to the Dr visits because they were

> not seeing the same

> child I was living with. It is unbelievable to me

> that all of you have

> been diagnosed so early. I have spent her life

> going to the Dr. &

> leaving with a diagnosis of " Non-specific Viral

> Illness " (NSV) or

> they would say she had Hand foot & mouth (which is

> like chicken pox,

> you should only get it once). After the 3rd or 4th

> time, they just

> said it must be herpengina, an intraoral strain of

> the herpes virus

> that can come with all of the other symptoms she has

> regularly. At

> 4 & 1/2 she had a 105 that last 10 days. Just when

> they were going to

> admit her, her fever broke. Not only did it break,

> it went down to

> 93.8. They told me to come directly to the ER, when

> we got there they

> said we should've called 911 as they were not sure

> if her body had lost

> its ability to fight whatever infection they had

> been unable to

> identify, & gone septic. Luckily that was not the

> case. But I have

> noticed that when her fevers breack her body temp

> drops to 96 degrees.

> Just when our Children's Hospital took notice that

> something else wierd

> was going on with her, my husband got a new job & we

> had to switch to

> kaiser. I felt like I was sarting all over again.

> In the past year she

> has had 7 Strep-like infections, each time they sais

> oh yeah that is

> strep & the culture was negative. She has already

> seen the surgeon &

> we are waiting for the scheduling of her

> tonsillectomy. The ENT

> surgeon had never heard of .

> I work at a hosptial & with drs. & no-one has ever

> heard of it. Our dx

> came as a fluke in a conversation between her curent

> Dr. & her

> colleague.

>

> Questions:

> How well did your children tolerate their

> immunizations? a's

> fever was almost 20 days after the 1year old shots.

> Does anyone live in the San Diego or Southern CA

> area?

> Observations:

> Joint pain is not listed as a charicteristic however

> I see that many of

> you have commented on it. a has it with

> almost every fever, I

> would say that at 105 I would imagine every hurts,

> but there have been

> times that the joint pai is so extreme, I would have

> to carry her into

> the Dr.'s office.

>

> Great to meet you all,

> Thanks for listening.

> Jane in San Diego

>

>

>

>

__________________________________

Start your day with - Make it your home page!

http://www./r/hs

[Guest guest]

Not to burst your bubble, but if you haven't read other messages in

this group you will be sad or maybe happy to hear that some of these

kids take like a 2-3 month " holiday " from the fevers. Most have no

rhyme or reason as to when. It will come back and with full force.

Well unless you had Tonsils take out. That seems to help some but

not others.

Kim

27 Mo PFAFA

> >

> > Hi All, I am so glad to have found you! I am the Mother of a 7

> 1/2 yr

> > old beautiful girl, a. She has had fevers since she was

at

> > least 6 months. Her fevers are always >103 lasting 4-7 days, and

> will

> > rise into the 105-106 range if not propoerly managed. She gets

> mouth

> > sores, swollen glands, & joint pain. On motrin/tylenol combo she

> > sometimes acts almost normal. When she was 3 I quit giving her

> > medication prior to the Dr visits because they were not seeing

the

> same

> > child I was living with. It is unbelievable to me that all of

you

> have

> > been diagnosed so early. I have spent her life going to the Dr.

&

> > leaving with a diagnosis of " Non-specific Viral Illness " (NSV)

> or

> > they would say she had Hand foot & mouth (which is like chicken

> pox,

> > you should only get it once). After the 3rd or 4th time, they

> just

> > said it must be herpengina, an intraoral strain of the herpes

> virus

> > that can come with all of the other symptoms she has regularly.

> At

> > 4 & 1/2 she had a 105 that last 10 days. Just when they were going

> to

> > admit her, her fever broke. Not only did it break, it went down

> to

> > 93.8. They told me to come directly to the ER, when we got there

> they

> > said we should've called 911 as they were not sure if her body

had

> lost

> > its ability to fight whatever infection they had been unable to

> > identify, & gone septic. Luckily that was not the case. But I

> have

> > noticed that when her fevers breack her body temp drops to 96

> degrees.

> > Just when our Children's Hospital took notice that something else

> wierd

> > was going on with her, my husband got a new job & we had to

switch

> to

> > kaiser. I felt like I was sarting all over again. In the past

> year she

> > has had 7 Strep-like infections, each time they sais oh yeah that

> is

> > strep & the culture was negative. She has already seen the

> surgeon &

> > we are waiting for the scheduling of her tonsillectomy. The ENT

> > surgeon had never heard of .

> > I work at a hosptial & with drs. & no-one has ever heard of it.

> Our dx

> > came as a fluke in a conversation between her curent Dr. & her

> > colleague.

> >

> > Questions:

> > How well did your children tolerate their immunizations?

> a's

> > fever was almost 20 days after the 1year old shots.

> > Does anyone live in the San Diego or Southern CA area?

> > Observations:

> > Joint pain is not listed as a charicteristic however I see that

> many of

> > you have commented on it. a has it with almost every

> fever, I

> > would say that at 105 I would imagine every hurts, but there have

> been

> > times that the joint pai is so extreme, I would have to carry her

> into

> > the Dr.'s office.

> >

> > Great to meet you all,

> > Thanks for listening.

> > Jane in San Diego

> >

>

[Guest guest]

-Gosh Kim that was not very posititve, it sounded kind of rude, Im

sorry maybe I misunderstood your comment. But we should be happy

when a child does not have a fever for 10 weeks. All it can do is

give the child a normal amount of time and a parent some hope in

these situations. Maybe you should keep negative comments to

yourself.

Laurie mom of 6 yrs old

-- In , " el (Abbott) "

<bkfrankel@v...> wrote:

>

> Not to burst your bubble, but if you haven't read other messages in

> this group you will be sad or maybe happy to hear that some of

these

> kids take like a 2-3 month " holiday " from the fevers. Most have no

> rhyme or reason as to when. It will come back and with full

force.

> Well unless you had Tonsils take out. That seems to help some but

> not others.

>

> Kim

> 27 Mo PFAFA

>

> > >

> > > Hi All, I am so glad to have found you! I am the Mother of a 7

> > 1/2 yr

> > > old beautiful girl, a. She has had fevers since she was

> at

> > > least 6 months. Her fevers are always >103 lasting 4-7 days,

and

> > will

> > > rise into the 105-106 range if not propoerly managed. She gets

> > mouth

> > > sores, swollen glands, & joint pain. On motrin/tylenol combo

she

> > > sometimes acts almost normal. When she was 3 I quit giving her

> > > medication prior to the Dr visits because they were not seeing

> the

> > same

> > > child I was living with. It is unbelievable to me that all of

> you

> > have

> > > been diagnosed so early. I have spent her life going to the

Dr.

> &

> > > leaving with a diagnosis of " Non-specific Viral Illness "

(NSV)

> > or

> > > they would say she had Hand foot & mouth (which is like chicken

> > pox,

> > > you should only get it once). After the 3rd or 4th time, they

> > just

> > > said it must be herpengina, an intraoral strain of the herpes

> > virus

> > > that can come with all of the other symptoms she has

regularly.

> > At

> > > 4 & 1/2 she had a 105 that last 10 days. Just when they were

going

> > to

> > > admit her, her fever broke. Not only did it break, it went

down

> > to

> > > 93.8. They told me to come directly to the ER, when we got

there

> > they

> > > said we should've called 911 as they were not sure if her body

> had

> > lost

> > > its ability to fight whatever infection they had been unable to

> > > identify, & gone septic. Luckily that was not the case. But I

> > have

> > > noticed that when her fevers breack her body temp drops to 96

> > degrees.

> > > Just when our Children's Hospital took notice that something

else

> > wierd

> > > was going on with her, my husband got a new job & we had to

> switch

> > to

> > > kaiser. I felt like I was sarting all over again. In the past

> > year she

> > > has had 7 Strep-like infections, each time they sais oh yeah

that

> > is

> > > strep & the culture was negative. She has already seen the

> > surgeon &

> > > we are waiting for the scheduling of her tonsillectomy. The

ENT

> > > surgeon had never heard of .

> > > I work at a hosptial & with drs. & no-one has ever heard of

it.

> > Our dx

> > > came as a fluke in a conversation between her curent Dr. & her

> > > colleague.

> > >

> > > Questions:

> > > How well did your children tolerate their immunizations?

> > a's

> > > fever was almost 20 days after the 1year old shots.

> > > Does anyone live in the San Diego or Southern CA area?

> > > Observations:

> > > Joint pain is not listed as a charicteristic however I see that

> > many of

> > > you have commented on it. a has it with almost every

> > fever, I

> > > would say that at 105 I would imagine every hurts, but there

have

> > been

> > > times that the joint pai is so extreme, I would have to carry

her

> > into

> > > the Dr.'s office.

> > >

> > > Great to meet you all,

> > > Thanks for listening.

> > > Jane in San Diego

> > >

> >

>

[Guest guest]

I agree and we need to try and HELP each other and NOT start any sort of

flaming... I HAVE NEVER had to use that expression in OVER 5 years.... of

owning this group.... It is a WONDERFUL break ... and we should cherish

this.... Also with true .... kids usually do stop fevering... and who

knows if this break is the last. Always HOPE!!

Also.... just mentioning this too... the reference to tonsil being a cure

all..... THIS too is not ALWAYS true. We have children here who have had

their tonsils removed and continue to fever.... With EACH of the treatments,

there is a cure rate as well as a failure rate.... Sadly with there is

NO exact cure. Each child is different and it is worth a try to evaluate

EACH treatment and try those a parent and physician believe will help that

specific child....

In good faith....

God Bless,

And lets be kind...

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

>>> -Gosh Kim that was not very posititve, it sounded kind of rude, Im

sorry maybe I misunderstood your comment. But we should be happy

when a child does not have a fever for 10 weeks. All it can do is

give the child a normal amount of time and a parent some hope in

these situations. Maybe you should keep negative comments to

yourself.

Laurie mom of 6 yrs old

> Not to burst your bubble, but if you haven't read other messages in

> this group you will be sad or maybe happy to hear that some of

these

> kids take like a 2-3 month " holiday " from the fevers. Most have no

> rhyme or reason as to when. It will come back and with full

force. <<<<<<<<<<<

[Guest guest]

It has been 10 weeks today since 's last fever. The first several

weeks I kept waiting for " the other shoe to drop " , so to speak. Now I'm

just ecstatic for every fever free day we have. When the honeymoon is

over - it's over. It could be next week or in a year, but for now we pack

in as many family activities as we can. Between age 2-1/2 and 3

went 9 months without a fever. Yes, Kim's comments were not very positive

- but we all have days that we are to frustrated to be positive. This

message board is here partly for that purpose. It's a place that we are

able to express feelings. Frustration can come out in many ways,

negativity being one of them.

When the fevers came back I was devastated. Now I don't allow myself to

think this is over - I just enjoy every day of this break to the fullest

extent.

I also try to keep some perspective. Yes, this thing all our kids have, to

be blatant, sucks. But there are far far worse things. I have a cousin with an

severely

autistic child and I know a family with two children who can't even feed

or dress themselves. These families have no or at least very few " good "

days to look forward.

Once I was assured that the fevers didn't have a root cause such as cancer

- I decided that living life, even though we can expect many

interruptions, was more important than anything for . Of course,

there are days that I need to remind myself of this from time to time.

Even when 's fevers were coming 2 weeks apart - we became determined

to make the " good " days count and put the episodes behind us. This

doesn't mean the we aren't being proactive, just living one day at a time.

Ellyn

Mom of possibly (4),

Alyssa(8), and Kate(3)

Philadelphia, PA

" magoo3153 " <magoo3153@...>

Sent by:

11/17/2005 10:55 PM

Please respond to

cc:

Subject: Re: Recently Diagnosed

-Gosh Kim that was not very posititve, it sounded kind of rude, Im

sorry maybe I misunderstood your comment. But we should be happy

when a child does not have a fever for 10 weeks. All it can do is

give the child a normal amount of time and a parent some hope in

these situations. Maybe you should keep negative comments to

yourself.

Laurie mom of 6 yrs old

-- In , " el (Abbott) "

<bkfrankel@v...> wrote:

>

> Not to burst your bubble, but if you haven't read other messages in

> this group you will be sad or maybe happy to hear that some of

these

> kids take like a 2-3 month " holiday " from the fevers. Most have no

> rhyme or reason as to when. It will come back and with full

force.

> Well unless you had Tonsils take out. That seems to help some but

> not others.

>

> Kim

> 27 Mo PFAFA

>

> > >

> > > Hi All, I am so glad to have found you! I am the Mother of a 7

> > 1/2 yr

> > > old beautiful girl, a. She has had fevers since she was

> at

> > > least 6 months. Her fevers are always >103 lasting 4-7 days,

and

> > will

> > > rise into the 105-106 range if not propoerly managed. She gets

> > mouth

> > > sores, swollen glands, & joint pain. On motrin/tylenol combo

she

> > > sometimes acts almost normal. When she was 3 I quit giving her

> > > medication prior to the Dr visits because they were not seeing

> the

> > same

> > > child I was living with. It is unbelievable to me that all of

> you

> > have

> > > been diagnosed so early. I have spent her life going to the

Dr.

> &

> > > leaving with a diagnosis of " Non-specific Viral Illness "

(NSV)

> > or

> > > they would say she had Hand foot & mouth (which is like chicken

> > pox,

> > > you should only get it once). After the 3rd or 4th time, they

> > just

> > > said it must be herpengina, an intraoral strain of the herpes

> > virus

> > > that can come with all of the other symptoms she has

regularly.

> > At

> > > 4 & 1/2 she had a 105 that last 10 days. Just when they were

going

> > to

> > > admit her, her fever broke. Not only did it break, it went

down

> > to

> > > 93.8. They told me to come directly to the ER, when we got

there

> > they

> > > said we should've called 911 as they were not sure if her body

> had

> > lost

> > > its ability to fight whatever infection they had been unable to

> > > identify, & gone septic. Luckily that was not the case. But I

> > have

> > > noticed that when her fevers breack her body temp drops to 96

> > degrees.

> > > Just when our Children's Hospital took notice that something

else

> > wierd

> > > was going on with her, my husband got a new job & we had to

> switch

> > to

> > > kaiser. I felt like I was sarting all over again. In the past

> > year she

> > > has had 7 Strep-like infections, each time they sais oh yeah

that

> > is

> > > strep & the culture was negative. She has already seen the

> > surgeon &

> > > we are waiting for the scheduling of her tonsillectomy. The

ENT

> > > surgeon had never heard of .

> > > I work at a hosptial & with drs. & no-one has ever heard of

it.

> > Our dx

> > > came as a fluke in a conversation between her curent Dr. & her

> > > colleague.

> > >

> > > Questions:

> > > How well did your children tolerate their immunizations?

> > a's

> > > fever was almost 20 days after the 1year old shots.

> > > Does anyone live in the San Diego or Southern CA area?

> > > Observations:

> > > Joint pain is not listed as a charicteristic however I see that

> > many of

> > > you have commented on it. a has it with almost every

> > fever, I

> > > would say that at 105 I would imagine every hurts, but there

have

> > been

> > > times that the joint pai is so extreme, I would have to carry

her

> > into

> > > the Dr.'s office.

> > >

> > > Great to meet you all,

> > > Thanks for listening.

> > > Jane in San Diego

> > >

> >

>

[Guest guest]

Very well said!

We have always gotten pretty consisent breaks...always in the fall

for about 5 months. Then unfortunately they come back with a

vengence in Feb. I am expecting the same this Feb, but Zachary just

missed his first fever this year and now that we know what to

expect, we will enjoy this break as much as we can! Least for us

the holidays are always without worrying about fever. While we know

that 99% we are not done, I'm sooo thankful we get this break when

we do!

So glad you are getting a break or maybe done!

Deanna

mom to Zachary 4 yrs, periodic fevers since 4 mos

Kalla, 2

Micah, 4 mos

> > > >

> > > > Hi All, I am so glad to have found you! I am the Mother of

a 7

> > > 1/2 yr

> > > > old beautiful girl, a. She has had fevers since she

was

> > at

> > > > least 6 months. Her fevers are always >103 lasting 4-7

days,

> and

> > > will

> > > > rise into the 105-106 range if not propoerly managed. She

gets

> > > mouth

> > > > sores, swollen glands, & joint pain. On motrin/tylenol

combo

> she

> > > > sometimes acts almost normal. When she was 3 I quit giving

her

> > > > medication prior to the Dr visits because they were not

seeing

> > the

> > > same

> > > > child I was living with. It is unbelievable to me that all

of

> > you

> > > have

> > > > been diagnosed so early. I have spent her life going to the

> Dr.

> > &

> > > > leaving with a diagnosis of " Non-specific Viral Illness "

> (NSV)

> > > or

> > > > they would say she had Hand foot & mouth (which is like

chicken

> > > pox,

> > > > you should only get it once). After the 3rd or 4th time,

they

> > > just

> > > > said it must be herpengina, an intraoral strain of the

herpes

> > > virus

> > > > that can come with all of the other symptoms she has

> regularly.

> > > At

> > > > 4 & 1/2 she had a 105 that last 10 days. Just when they were

> going

> > > to

> > > > admit her, her fever broke. Not only did it break, it went

> down

> > > to

> > > > 93.8. They told me to come directly to the ER, when we got

> there

> > > they

> > > > said we should've called 911 as they were not sure if her

body

> > had

> > > lost

> > > > its ability to fight whatever infection they had been unable

to

> > > > identify, & gone septic. Luckily that was not the case.

But I

> > > have

> > > > noticed that when her fevers breack her body temp drops to

96

> > > degrees.

> > > > Just when our Children's Hospital took notice that something

> else

> > > wierd

> > > > was going on with her, my husband got a new job & we had to

> > switch

> > > to

> > > > kaiser. I felt like I was sarting all over again. In the

past

> > > year she

> > > > has had 7 Strep-like infections, each time they sais oh yeah

> that

> > > is

> > > > strep & the culture was negative. She has already seen the

> > > surgeon &

> > > > we are waiting for the scheduling of her tonsillectomy. The

> ENT

> > > > surgeon had never heard of .

> > > > I work at a hosptial & with drs. & no-one has ever heard of

> it.

> > > Our dx

> > > > came as a fluke in a conversation between her curent Dr. &

her

> > > > colleague.

> > > >

> > > > Questions:

> > > > How well did your children tolerate their immunizations?

> > > a's

> > > > fever was almost 20 days after the 1year old shots.

> > > > Does anyone live in the San Diego or Southern CA area?

> > > > Observations:

> > > > Joint pain is not listed as a charicteristic however I see

that

> > > many of

> > > > you have commented on it. a has it with almost every

> > > fever, I

> > > > would say that at 105 I would imagine every hurts, but there

> have

> > > been

> > > > times that the joint pai is so extreme, I would have to

carry

> her

> > > into

> > > > the Dr.'s office.

> > > >

> > > > Great to meet you all,

> > > > Thanks for listening.

> > > > Jane in San Diego

> > > >

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

Hi again:

I am the one who shared my joy (at the end of a post responding to

someone's question) that my son has been fever free for 10 weeks,

which prompted Kim's somewhat " oddly worded reply. " I know that

this is likely not the end of for him, but I was just sharing

some good news as other parent's do on this site. I have to admit I

was pretty surprised at the tone/manner of Kim's response. I knew

what she was saying was true, but the way she said it took me by

surprise.

However, I do appreciate very much the two people (Fran and Laurie)

who posted afterward and " stuck up " for my joy in our glorious 10

weeks of no fever!

We are still fever free and loving every day! Each missed fever is a

blessed event!

Thanks! , mom to Jonah in Tampa, Florida

>

> I agree and we need to try and HELP each other and NOT start any

sort of

> flaming... I HAVE NEVER had to use that expression in OVER 5

years.... of

> owning this group.... It is a WONDERFUL break ... and we should

cherish

> this.... Also with true .... kids usually do stop fevering...

and who

> knows if this break is the last. Always HOPE!!

>

> Also.... just mentioning this too... the reference to tonsil being

a cure

> all..... THIS too is not ALWAYS true. We have children here who

have had

> their tonsils removed and continue to fever.... With EACH of the

treatments,

> there is a cure rate as well as a failure rate.... Sadly with

there is

> NO exact cure. Each child is different and it is worth a try to

evaluate

> EACH treatment and try those a parent and physician believe will

help that

> specific child....

> In good faith....

> God Bless,

> And lets be kind...

> Fran

> Fran A Bulone

> Mom to ph 6 yrs old

> Waxhaw, NC

> Owner & Moderator Group

>

>

>

>

>

>

> >>> -Gosh Kim that was not very posititve, it sounded kind of

rude, Im

> sorry maybe I misunderstood your comment. But we should be happy

> when a child does not have a fever for 10 weeks. All it can do is

> give the child a normal amount of time and a parent some hope in

> these situations. Maybe you should keep negative comments to

> yourself.

>

> Laurie mom of 6 yrs old

>

> > Not to burst your bubble, but if you haven't read other

messages in

> > this group you will be sad or maybe happy to hear that some of

> these

> > kids take like a 2-3 month " holiday " from the fevers. Most have

no

> > rhyme or reason as to when. It will come back and with full

> force. <<<<<<<<<<<

>

>

>

>

[Guest guest]

that is exciting news. We are just starting a new matinence

medicine alled Cimitiden (not sure on the spelling) but we are 4

weeks fever free and it unloads so many worries when you are fever

free I just keep are fingers crossed hoping that somewhere there is a

end in sight or a really long break

Hang in there and always to remember to share your special triumpets

its important for us new ones who were just diagnosed to have some

hope in this matter.

Thanks

Laurie mom to 6

- In , " nchad1967 " <nancy.chad@v...> wrote:

>

> Hi again:

>

> I am the one who shared my joy (at the end of a post responding to

> someone's question) that my son has been fever free for 10 weeks,

> which prompted Kim's somewhat " oddly worded reply. " I know that

> this is likely not the end of for him, but I was just sharing

> some good news as other parent's do on this site. I have to admit

I

> was pretty surprised at the tone/manner of Kim's response. I knew

> what she was saying was true, but the way she said it took me by

> surprise.

>

> However, I do appreciate very much the two people (Fran and Laurie)

> who posted afterward and " stuck up " for my joy in our glorious 10

> weeks of no fever!

>

> We are still fever free and loving every day! Each missed fever is

a

> blessed event!

>

>

> Thanks! , mom to Jonah in Tampa, Florida

>

>

>

>

> >

> > I agree and we need to try and HELP each other and NOT start any

> sort of

> > flaming... I HAVE NEVER had to use that expression in OVER 5

> years.... of

> > owning this group.... It is a WONDERFUL break ... and we should

> cherish

> > this.... Also with true .... kids usually do stop

fevering...

> and who

> > knows if this break is the last. Always HOPE!!

> >

> > Also.... just mentioning this too... the reference to tonsil

being

> a cure

> > all..... THIS too is not ALWAYS true. We have children here who

> have had

> > their tonsils removed and continue to fever.... With EACH of the

> treatments,

> > there is a cure rate as well as a failure rate.... Sadly with

> there is

> > NO exact cure. Each child is different and it is worth a try to

> evaluate

> > EACH treatment and try those a parent and physician believe will

> help that

> > specific child....

> > In good faith....

> > God Bless,

> > And lets be kind...

> > Fran

> > Fran A Bulone

> > Mom to ph 6 yrs old

> > Waxhaw, NC

> > Owner & Moderator Group

> >

> >

> >

> >

> >

> >

> > >>> -Gosh Kim that was not very posititve, it sounded kind of

> rude, Im

> > sorry maybe I misunderstood your comment. But we should be happy

> > when a child does not have a fever for 10 weeks. All it can do

is

> > give the child a normal amount of time and a parent some hope in

> > these situations. Maybe you should keep negative comments to

> > yourself.

> >

> > Laurie mom of 6 yrs old

> >

> > > Not to burst your bubble, but if you haven't read other

> messages in

> > > this group you will be sad or maybe happy to hear that some of

> > these

> > > kids take like a 2-3 month " holiday " from the fevers. Most

have

> no

> > > rhyme or reason as to when. It will come back and with full

> > force. <<<<<<<<<<<

> >

> >

> >

> >

[Guest guest]

> > >

> > > I agree and we need to try and HELP each other and NOT start

any

> > sort of

> > > flaming... I HAVE NEVER had to use that expression in OVER 5

> > years.... of

> > > owning this group.... It is a WONDERFUL break ... and we

should

> > cherish

> > > this.... Also with true .... kids usually do stop

> fevering...

> > and who

> > > knows if this break is the last. Always HOPE!!

> > >

> > > Also.... just mentioning this too... the reference to tonsil

> being

> > a cure

> > > all..... THIS too is not ALWAYS true. We have children here

who

> > have had

> > > their tonsils removed and continue to fever.... With EACH of

the

> > treatments,

> > > there is a cure rate as well as a failure rate.... Sadly with

> > there is

> > > NO exact cure. Each child is different and it is worth a try

to

> > evaluate

> > > EACH treatment and try those a parent and physician believe

will

> > help that

> > > specific child....

> > > In good faith....

> > > God Bless,

> > > And lets be kind...

> > > Fran

> > > Fran A Bulone

> > > Mom to ph 6 yrs old

> > > Waxhaw, NC

> > > Owner & Moderator Group

> > >

> > >

> > >

> > >

> > >

> > >

> > > >>> -Gosh Kim that was not very posititve, it sounded kind of

> > rude, Im

> > > sorry maybe I misunderstood your comment. But we should be

happy

> > > when a child does not have a fever for 10 weeks. All it can

do

> is

> > > give the child a normal amount of time and a parent some hope

in

> > > these situations. Maybe you should keep negative comments to

> > > yourself.

> > >

> > > Laurie mom of 6 yrs old

> > >

> > > > Not to burst your bubble, but if you haven't read other

> > messages in

> > > > this group you will be sad or maybe happy to hear that some

of

> > > these

> > > > kids take like a 2-3 month " holiday " from the fevers. Most

> have

> > no

> > > > rhyme or reason as to when. It will come back and with full

> > > force. <<<<<<<<<<<

> > >

> > >

> > >

> > >

[Guest guest]

Not to worry - Stage 0, all that stuff - just need to get yourself smart and understand the disease. Lots of choices, you may wind up living a normal life span.

The following is true. CLL is incurable except through an alogeneic transplant (from someone else).

However, it is a CHRONIC disease and can leave you alone for a LONG time.

That's a bit of a paradox, aggressive leukemias are curable but can also do you in quickly. You're one of the lucky ones.....

Let us know as much as you can about your situation.

Usually when a patient is first diagnosed they are "staged", that means they get a blood cound, a CT scan, and possibly a bone marrow biopsy. I'm not sure how much of this was done before they concluded that you are stage 0.

Then, control the desire to rush to treatment. It has never been proven that early treatment helps.

Finally, although a transplant may be in your future, it is certainly not the first thing one does.

Relax, you have a LOT OF GOOD TIME LEFT. Your job is to GET SMART!!!!

Someone mentioned Hamblin. If you're in the UK, he is one of your best choices.

We have a medical advisor on this list, but he's in the US, Dr. Furman.

What is your name?

See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

One other thing - go to our related web site www.cllinfogroup.org

There is a lot of stuff there for new as well as experienced patients

Much luck, and don't be scared!!! The more you know, the better you'll be able to deal with it.....

See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi...Sorry to hear you've been diagnosed with CLL. It is scarry at first because you don't know what is going on or what questions to ask. You have found a wonderful group here, everyone in the group is helpful and caring, there is no insignifiant question.

The first thing you need is some tests to understand what " type " of CLL you have. Have the test run with a doctor specialsing in CLL. I see from your email address you are in the UK. Dr. Terry Hamblin is in the UK as well he is one of the world's best CLL docs. Here's a link http://cll.acor.org/help.htm

Dr Hamblin has a blog on this web page, his location is on his web page (hopefully you're close by). Dr Hamblin's blog page is about half way down the right hand side of the web page. You will find other helpful on the web page as well.

Just remember your not in this alone you have all the other CLLers out there who will be most helpful. Try not to worry there are ways to manage CLL.

I will keep you and your family in my prayers.

Tipton

age 63, diagnoised 2001, completed FCR treatment in April 2005

On 9/16/07, alliwile <alliwile@...> wrote:

hi i have been recently diagnosed with cll i am a 38 year old single parent of 2 and i am very scared. I have been told that this disease is incurable by one doctor then told that if i were to have a bone

marrow transplant i would be potentially cured. I am in the 0 stage at the moment can anyone answer my questions

[Guest guest]

I was in a similar situation as yours 2 yrs. ago. You will get lots of help thru this list, and there is one other that is helpful- ACOR. They have a great help page with lots of info. CLL topics is also great. Try not to get too overwhelmed with the reading and worrying. Stage 0 is a good time to read and learn. You will learn that there are certain tests (prognostic indicators thru flow cytometry and FISH tests) that will explain where your CLL lands. Some are slower growing than others. It's good to see an Onclogist who specializes in CLL at least for an initial consult and to check with at least yearly while you find someone close to home who is also experienced. If you live near one of the major centers that is good, but if not you can look for one not too far from home.

The most important thing is not to panic. There are decent treatments when needed and no need to rush at stage 0. I remain untreated and feeling great, with my CLL numbers not growing too much. I am sure lots of other more experienced people will respond. It may help to state where you live so others can tell you of Oncologists they know of who have been good to work with. Many oncologists/hematologists have little experience with CLL so you have to be careful of who you are working with. The onclogist I saw in my rural area sent me to someone more experienced because he does not see many people with CLL in his practice.

Good Luck and keep writing,

Chris

-----Original Message-----From: [mailto: ]On Behalf Of alliwileSent: Sunday, September 16, 2007 5:53 PM Subject: recently diagnosed

hi i have been recently diagnosed with cll i am a 38 year old single parent of 2 and i am very scared. I have been told that this disease is incurable by one doctor then told that if i were to have a bone marrow transplant i would be potentially cured. I am in the 0 stage at the moment can anyone answer my questions

[Guest guest]

Some cases of CLL go many years, even "a lifetime," without causing a problem and without requiring treatment. Many cases go several years without problems, without treatment. Personally, I've had CLL for 8 years without treatment and feel good. If your white blood count is not too far above normal and you have no other symptoms, the place to begin is to simply wait 3 or 4 months and have your white count checked again. You've found lots of support here. Best wishes, waynealliwile <alliwile@...> wrote: hi i have been recently diagnosed with cll i am a 38 year old single parent of 2 and i am very scared. I have been told that this disease is incurable by one doctor then told that if i were to have a bone marrow transplant i would be potentially cured. I am in the 0 stage at the moment can anyone answer my questions

Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more.

[Guest guest]

" alliwile " (I do not know your name, so I put the reply header in

quotes. Just felt better having someone to address the reply to. "

Unfortunately, CLL is incurable at this time, but as you have heard

from many, patients can go on for a very long time with their

disease. This time is increasing all of the time. It is important

to remember that we are not just talking about the therapies

available now, but also the therapies that will be available in ten

years, because you will still be around then. This is the approach

that many find helps keep them going.

An allogeneic transplant is potentially curable, but with great

risks. My bias is to delay as long as is possible because we are

constantly finding things that will make transplants better and

safer. The most important thing is to find an oncologist that is

very experienced in CLL. Where are you located?

Rick Furman, MD

>

> hi i have been recently diagnosed with cll i am a 38 year old

single

> parent of 2 and i am very scared. I have been told that this

disease

> is incurable by one doctor then told that if i were to have a bone

> marrow transplant i would be potentially cured. I am in the 0

stage

> at the moment can anyone answer my questions

>

[Guest guest]

thank you for your reply i am in bristolrrfman <rrfurman@...> wrote: "alliwile" (I do not know your name, so I put the reply header in quotes. Just felt better having someone to address the reply to."Unfortunately, CLL is incurable at this time, but as you have heard from many, patients can go on for a very long time with their disease. This time is increasing all of the time. It is important to remember that we are not just talking about the therapies available now, but also the therapies that will be available in ten years, because you will still be around then. This is the approach that many find helps keep them going.An allogeneic transplant is potentially curable, but with great risks. My bias is to delay as long as is possible because we are constantly finding things that will make

transplants better and safer. The most important thing is to find an oncologist that is very experienced in CLL. Where are you located?Rick Furman, MD>> hi i have been recently diagnosed with cll i am a 38 year old single > parent of 2 and i am very scared. I have been told that this disease > is incurable by one doctor then told that if i were to have a bone > marrow transplant i would be potentially cured. I am in the 0 stage > at the moment can anyone answer my questions>

[Guest guest]

thank you for replyingWayne McPherson <whmcpherson@...> wrote: Some cases of CLL go many years, even "a lifetime," without causing a problem and without requiring treatment. Many cases go several years without problems, without treatment. Personally, I've had CLL for 8 years without treatment and feel good. If your

white blood count is not too far above normal and you have no other symptoms, the place to begin is to simply wait 3 or 4 months and have your white count checked again. You've found lots of support here. Best wishes, waynealliwile <alliwile@...> wrote: hi i have been recently diagnosed with cll i am a 38 year old single parent of 2 and i am very scared. I have been told that this disease is incurable by one doctor then told that if i were to have a bone marrow transplant i would be potentially cured. I am in the 0 stage at the moment can anyone answer my questions Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos & more.

For ideas on reducing your carbon footprint visit For Good this month.

[Guest guest]

thank you for your reply i live in bristolThe Randolph's <randolrn@...> wrote: I was in a similar situation as yours 2 yrs. ago. You will get lots of help thru this list, and there is one other that is helpful- ACOR. They have a great help page with lots of info. CLL topics is also great. Try not to get too overwhelmed with the reading and worrying. Stage 0 is a good time to read and learn. You will learn that there are certain tests (prognostic indicators thru flow cytometry and FISH tests) that will explain where your CLL lands. Some are slower growing than others. It's good to see an Onclogist who specializes in CLL at least for an initial consult and to check with at least

yearly while you find someone close to home who is also experienced. If you live near one of the major centers that is good, but if not you can look for one not too far from home. The most important thing is not to panic. There are decent treatments when needed and no need to rush at stage 0. I remain untreated and feeling great, with my CLL numbers not growing too much. I am sure lots of other more experienced people will respond. It may help to state where you live so others can tell you of Oncologists they know of who have been good to work with. Many oncologists/hematologists have little experience with CLL so you have to be careful of who you are working with. The onclogist I saw in my rural area sent me to someone more experienced because he does not see many people with

CLL in his practice. Good Luck and keep writing, -----Original Message-----From: [mailto: ]On Behalf Of alliwileSent: Sunday, September 16, 2007 5:53 PM Subject: recently diagnosed hi i have been recently diagnosed with cll i am a 38 year old single parent of 2 and i am very scared. I have been told that this disease is incurable by one doctor then told that if i were to have a bone marrow transplant i would be potentially cured. I am in the 0 stage at the moment can anyone answer my

questions

Answers - Get better answers from someone who knows. Try

it now.

[Guest guest]

sorry if i keep sending the same emails im not very good with computer and i am getting a bit confused with the messages, i have had a bone marrow biopsy and the consultant said that it confirms what he thought that i am in 0 stage, my name is allison and i live in bristol. I havnt got to see the specialist for another 2 months, they wanted to wait for three but i felt happier knowing that i would be seen sooner. my sister has just given some blood so that they can match her tissue type. I do tend to look ahead and i would like to know more about a transplant, i get the impression from others that it is not a good idea why? i am under a consultant at the bri in bristol can people just request to see a specialist in cll or do people just carry on with the heamatoligst. thanks for you helpjb50192@... wrote: Not to worry - Stage 0, all that stuff - just need to get yourself smart and understand the disease. Lots of choices, you may wind up living a normal life span. The following is true. CLL is incurable except through an alogeneic transplant (from someone else). However, it is a CHRONIC disease and can leave you alone for a LONG time. That's a bit of a paradox, aggressive leukemias are curable but can also do you in quickly. You're one of the lucky ones..... Let us know as much as you can about your situation. Usually when a patient is first diagnosed they are "staged", that means they get a blood cound, a CT scan, and possibly a bone marrow biopsy. I'm not sure how much of this was done before they concluded that

you are stage 0. Then, control the desire to rush to treatment. It has never been proven that early treatment helps. Finally, although a transplant may be in your future, it is certainly not the first thing one does. Relax, you have a LOT OF GOOD TIME LEFT. Your job is to GET SMART!!!! Someone mentioned Hamblin. If you're in the UK, he is one of your best choices. We have a medical advisor on this list, but he's in the US, Dr. Furman. What is your name? See what's new at AOL.com and Make AOL Your Homepage.

For ideas on reducing your carbon footprint visit For Good this month.

[Guest guest]

—My daughter was diagnosed

two years ago at age 35. I will be thinking of you. The other

members are giving you good advise. I do not understand why you were told

to wait 2 or 3 months to see a oncologist/hematologist. We live in Spartanburg, SC and have

a wonderful hematologist and our hospital has a partnership with MD in

Houston which

is great. There are so many indicators and our experience has been all of

these test must be run and reviewed by physicians who know CLL (also your

case is rare at your age). We were overwhelmed when we were first told, I

read too much and drove myself crazy. But it sinks in, and with good

physicians and good knowledgeable advice your life should not change for a long

time. At stage 0, there is time on your side, plus as Dr. Keating (MD

) told us hopefully a vaccine will be found before you need it.

Hunsinger

shunsinger@...

From:

[mailto: ] On Behalf Of allison evans

Sent: Monday, September 17, 2007

5:43 AM

Subject: RE: recently

diagnosed

thank you

for your reply i live in bristol

The Randolph's <randolrnadelphia (DOT) net>

wrote:

I was in a similar situation as yours 2

yrs. ago. You will get lots of help thru this list, and there is one other that

is helpful- ACOR. They have a great help page with lots of info. CLL topics is

also great. Try not to get too overwhelmed with the reading and worrying. Stage

0 is a good time to read and learn. You will learn that there are certain tests

(prognostic indicators thru flow cytometry and FISH tests) that will

explain where your CLL lands. Some are slower growing than others. It's good to

see an Onclogist who specializes in CLL at least for an initial consult and to

check with at least yearly while you find someone close to home who is also

experienced. If you live near one of the major centers that is good, but if not

you can look for one not too far from home.

The most important thing is not to panic.

There are decent treatments when needed and no need to rush at stage 0. I

remain untreated and feeling great, with my CLL numbers not growing too much. I

am sure lots of other more experienced people will respond. It may help to

state where you live so others can tell you of Oncologists they know of who

have been good to work with. Many oncologists/hematologists have little

experience with CLL so you have to be careful of who you are working with. The

onclogist I saw in my rural area sent me to someone more experienced because he

does not see many people with CLL in his practice.

Good Luck and keep writing,

Chris

recently

diagnosed

hi i have been recently

diagnosed with cll i am a 38 year old single

parent of 2 and i am very scared. I have been told that this disease

is incurable by one doctor then told that if i were to have a bone

marrow transplant i would be potentially cured. I am in the 0 stage

at the moment can anyone answer my questions

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