Re: Question about fevers....

[Guest guest]

YES!!! I rarely respond, but this spoke to me. was in the

hospital for 6 days for " mystery fevers. " They could find nothing

wrong except a fever of 102 starting at 3 or 4 every afternoon. It

was the 1st time he had gone 5 weeks before getting IVIG (we usually

got it every 3 weeks, but there was a shortage, we now do SubQ.)He

was also low in the mornings, and fine until the fever went up. I

told the Drs something wasn't right, and after a week he was

admitted. This was the week Agent Cool Blue was recalled, and they

think it may have had something to do with it. I put my foot down

when they wanted to do a spinal tap because they had no clue. Finally

it cleared up and they still don't know what it was. Let me know what

you find out-

>

> Hi everyone...

> I just was curious if anyone here has had any experience with

recurrent

> fevers with no other symptoms.

> Sasha keeps having fevers of 101 (sometimes 102) and because she

was so

> sick in April with the kidney issue they are afraid that it's her

> kidneys every time (sometimes this happens once or twice a week).

It's

> always in the afternoon and night. This afternoon at 1 it was

100.4

> (no biggie) but by tonight it was 101.0 before bed. She runs

REALLY

> low in the morning (97.1-98.5) and, as of 6 months ago when we temp

> charted - she ran 99.5 as her average temp in the evening (yes, she

had

> fevers back then too - but those were related to obvious illnesses).

>

> They want to do a bag urine for any fever that's 101.0 or higher

> (because of her kidney infection and the fact that her right kidney

> still is swollen) and I really just don't think it's necessary to

do it

> so much since she gets these fevers so often.

> I am NOT a doctor so I have to go with what they say...but I DID

put a

> call into the Nephrologist and she was on vacation so the on call

said

> we could hold off on the urine if she had one in the past week or

two

> and she was no worse -

> I think we'll be fine once we get a set system for the

fevers....right

> now it's just so black and white.... fever of 101 and bag urine is

in

> order (even if the fever is gone by the time the office opens in

the

> a.m.!)

> I know they are being cautious - and I get why....but I just think

that

> maybe these fevers aren't harmful????? Can anyone shed light on

this?

>

> Monday she had a CBC done and her white count is elevated but not

> horrible (13) and the doc said it's in her lymphs and not her polys

so

> we're okay....whatever that means!

>

> She's doing really well on the Sub-Q and our biggest issue is the

> fevers - which aren't related to the infusions since she'll get

them

> anywhere from 2 days to a 6 days after infusion (there's no pattern

to

> them).

> When she has the fevers - she's clingy and cranky - but there are

NO

> other symptoms of illness.

> I'm just frustrated.

> I will be asking the immunologist at our next appointment about

this.

> Thanks

> Stef

>

[Guest guest]

I will definitely post when I get an answer.

This a.m. Sasha was 95.1 (yes, I typed that right)rectally (at 7

a.m.) and last night it was 101 ---- odd.

Her room has a/c on - but at a low rate and she's in fuzzy fleece zip

up PJ's with feet.....and had a blanket on her. I actually thought

the room might have been too warm for her.....and *I* thought she

felt WARM.....lol.....far from.....

Anyway, I'll post an update when I know.

Thanks

Stef

> >

> > Hi everyone...

> > I just was curious if anyone here has had any experience with

> recurrent

> > fevers with no other symptoms.

> > Sasha keeps having fevers of 101 (sometimes 102) and because she

> was so

> > sick in April with the kidney issue they are afraid that it's her

> > kidneys every time (sometimes this happens once or twice a

week).

> It's

> > always in the afternoon and night. This afternoon at 1 it was

> 100.4

> > (no biggie) but by tonight it was 101.0 before bed. She runs

> REALLY

> > low in the morning (97.1-98.5) and, as of 6 months ago when we

temp

> > charted - she ran 99.5 as her average temp in the evening (yes,

she

> had

> > fevers back then too - but those were related to obvious

illnesses).

> >

> > They want to do a bag urine for any fever that's 101.0 or higher

> > (because of her kidney infection and the fact that her right

kidney

> > still is swollen) and I really just don't think it's necessary to

> do it

> > so much since she gets these fevers so often.

> > I am NOT a doctor so I have to go with what they say...but I DID

> put a

> > call into the Nephrologist and she was on vacation so the on call

> said

> > we could hold off on the urine if she had one in the past week or

> two

> > and she was no worse -

> > I think we'll be fine once we get a set system for the

> fevers....right

> > now it's just so black and white.... fever of 101 and bag urine

is

> in

> > order (even if the fever is gone by the time the office opens in

> the

> > a.m.!)

> > I know they are being cautious - and I get why....but I just

think

> that

> > maybe these fevers aren't harmful????? Can anyone shed light on

> this?

> >

> > Monday she had a CBC done and her white count is elevated but not

> > horrible (13) and the doc said it's in her lymphs and not her

polys

> so

> > we're okay....whatever that means!

> >

> > She's doing really well on the Sub-Q and our biggest issue is the

> > fevers - which aren't related to the infusions since she'll get

> them

> > anywhere from 2 days to a 6 days after infusion (there's no

pattern

> to

> > them).

> > When she has the fevers - she's clingy and cranky - but there are

> NO

> > other symptoms of illness.

> > I'm just frustrated.

> > I will be asking the immunologist at our next appointment about

> this.

> > Thanks

> > Stef

> >

>

[Guest guest]

Stef:

This may have nothing to do with Sasha, but I thought I would? mention it.

As a young adult (I have no PID that we know of, but a suspicious history), I

would get recurrent fevers, anywhere from the 99s to 102. Got so many tests,

including for tropical diseases, etc., could not figure it out.

After a couple of years of this, I had a dental x-ray that showed a dark region

over a previously injured tooth (root canal as a child), I had no symptoms of a

problem and we did not connect it to the FUO. I had surgery and they pulled out

a " bag " of stuff from that area, didn't culture it or anything, just remarked

that it was odd. Suddenly, no more fevers. Didn't connect the two until the

fevers were gone.

So I always want to mention when I hear FUO to consider dental issues, as most

docs do not.

HTH

(mom to age 8, selective antibody disorder, and Kate, age 4)

Question about fevers....

Hi everyone...

I just was curious if anyone here has had any experience with recurrent

fevers with no other symptoms.

Sasha keeps having fevers of 101 (sometimes 102) and because she was so

sick in April with the kidney issue they are afraid that it's her

kidneys every time (sometimes this happens once or twice a week). It's

always in the afternoon and night. This afternoon at 1 it was 100.4

(no biggie) but by tonight it was 101.0 before bed. She runs REALLY

low in the morning (97.1-98.5) and, as of 6 months ago when we temp

charted - she ran 99.5 as her average temp in the evening (yes, she had

fevers back then too - but those were related to obvious illnesses).

They want to do a bag urine for any fever that's 101.0 or higher

(because of her kidney infection and the fact that her right kidney

still is swollen) and I really just don't think it's necessary to do it

so much since she gets these fevers so often.

I am NOT a doctor so I have to go with what they say...but I DID put a

call into the Nephrologist and she was on vacation so the on call said

we could hold off on the urine if she had one in the past week or two

and she was no worse -

I think we'll be fine once we get a set system for the fevers....right

now it's just so black and white.... fever of 101 and bag urine is in

order (even if the fever is gone by the time the office opens in the

a.m.!)

I know they are being cautious - and I get why....but I just think that

maybe these fevers aren't harmful????? Can anyone shed light on this?

Monday she had a CBC done and her white count is elevated but not

horrible (13) and the doc said it's in her lymphs and not her polys so

we're okay....whatever that means!

She's doing really well on the Sub-Q and our biggest issue is the

fevers - which aren't related to the infusions since she'll get them

anywhere from 2 days to a 6 days after infusion (there's no pattern to

them).

When she has the fevers - she's clingy and cranky - but there are NO

other symptoms of illness.

I'm just frustrated.

I will be asking the immunologist at our next appointment about this.

Thanks

Stef

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Thanks,

She saw a dentist for a screening and he said it all looked okay

other than a plaque build up on her front teeth (she was 18 months at

the time).

It's a good thought to keep in mind tho!

Thanks

Stef

>

> Stef:

>

> This may have nothing to do with Sasha, but I thought I would?

mention it.

>

> As a young adult (I have no PID that we know of, but a suspicious

history), I would get recurrent fevers, anywhere from the 99s to 102.

Got so many tests, including for tropical diseases, etc., could not

figure it out.

>

> After a couple of years of this, I had a dental x-ray that showed a

dark region over a previously injured tooth (root canal as a child),

I had no symptoms of a problem and we did not connect it to the FUO.

I had surgery and they pulled out a " bag " of stuff from that area,

didn't culture it or anything, just remarked that it was odd.

Suddenly, no more fevers. Didn't connect the two until the fevers

were gone.

>

> So I always want to mention when I hear FUO to consider dental

issues, as most docs do not.

>

> HTH

>

> (mom to age 8, selective antibody disorder, and Kate,

age 4)

>

>

> Question about fevers....

>

>

>

> Hi everyone...

> I just was curious if anyone here has had any experience with

recurrent

> fevers with no other symptoms.

> Sasha keeps having fevers of 101 (sometimes 102) and because she

was so

> sick in April with the kidney issue they are afraid that it's her

> kidneys every time (sometimes this happens once or twice a week).

It's

> always in the afternoon and night. This afternoon at 1 it was

100.4

> (no biggie) but by tonight it was 101.0 before bed. She runs

REALLY

> low in the morning (97.1-98.5) and, as of 6 months ago when we temp

> charted - she ran 99.5 as her average temp in the evening (yes, she

had

> fevers back then too - but those were related to obvious illnesses).

>

> They want to do a bag urine for any fever that's 101.0 or higher

> (because of her kidney infection and the fact that her right kidney

> still is swollen) and I really just don't think it's necessary to

do it

> so much since she gets these fevers so often.

> I am NOT a doctor so I have to go with what they say...but I DID

put a

> call into the Nephrologist and she was on vacation so the on call

said

> we could hold off on the urine if she had one in the past week or

two

> and she was no worse -

> I think we'll be fine once we get a set system for the

fevers....right

> now it's just so black and white.... fever of 101 and bag urine is

in

> order (even if the fever is gone by the time the office opens in

the

> a.m.!)

> I know they are being cautious - and I get why....but I just think

that

> maybe these fevers aren't harmful????? Can anyone shed light on

this?

>

> Monday she had a CBC done and her white count is elevated but not

> horrible (13) and the doc said it's in her lymphs and not her polys

so

> we're okay....whatever that means!

>

> She's doing really well on the Sub-Q and our biggest issue is the

> fevers - which aren't related to the infusions since she'll get

them

> anywhere from 2 days to a 6 days after infusion (there's no pattern

to

> them).

> When she has the fevers - she's clingy and cranky - but there are

NO

> other symptoms of illness.

> I'm just frustrated.

> I will be asking the immunologist at our next appointment about

this.

> Thanks

> Stef

>

>

>

> This forum is open to parents and caregivers of children diagnosed

with a

> Primary Immune Deficiency. Opinions or medical advice stated here

are the sole

> responsibility of the poster and should not be taken as

professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

/messages

>

[Guest guest]

There are many reasons for this...about half of the time it is infection

related. And then, the other half...autoimmune, chronic viral, neoplastic,

absesses (like had), and I don't know.... In our case, it was overgrowth

of bugs in her GI (+poor motility and CVID). Once her GI problems were managed,

the FUOs and vomiting stopped.

mom to CVIDer

[Guest guest]

Thanks ...

I started charting the temps...and I'm going to give them to the immuno

after 2 weeks of solid charting and we'll see what he has to say about

it....hopefully he'll have some insight....if she wasn't bothered by

it - I'd leave it alone - but she's AWFUL cranky - like yesterday at

10:30 a.m. she had 100.2 - by the end of the day she was beserk and I

didn't have a thermometer - but I am sure she had a temp ---- usually

she's not above 100.0 until late afternoon (even WITH the fevers)- so

she was really cooking - but today she's been TOTALLY fine ALL

day....no temp, nothing....I guess that's what's weird to me....

Thanks!

I appreciate the response!

Stef

>

> There are many reasons for this...about half of the time it is

infection related. And then, the other half...autoimmune, chronic

viral, neoplastic, absesses (like had), and I don't know.... In

our case, it was overgrowth of bugs in her GI (+poor motility and

CVID). Once her GI problems were managed, the FUOs and vomiting

stopped.

>

>

> mom to CVIDer

>

>

>

>