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I have been on antibiotics many times and never been told it is bad for the liver.I feel that if the doctor thinks you should be on an antibiotic then you should.

Gail

-----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of SegalSent: August 26, 2007 12:01 PMTo: HepatitisCSupportGroupForDummies Subject: Re: fever

How does Pentilcilin or their direvitives effect the liver ?

Regards

Bill

RE: fever

I use tylenol for fever.

Gail

-----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of SegalSent: August 26, 2007 1:09 AMTo: HepatitisCSupportGroupForDummies Subject: fever

What can I use for fever> I am not on TX but I am concerned .How about Aspirin and Mylanta ?

Regards

Bill

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I have been on antibiotics many times and never been told it is bad for the liver.I feel that if the doctor thinks you should be on an antibiotic then you should.

Gail

-----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of SegalSent: August 26, 2007 12:01 PMTo: HepatitisCSupportGroupForDummies Subject: Re: fever

How does Pentilcilin or their direvitives effect the liver ?

Regards

Bill

RE: fever

I use tylenol for fever.

Gail

-----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of SegalSent: August 26, 2007 1:09 AMTo: HepatitisCSupportGroupForDummies Subject: fever

What can I use for fever> I am not on TX but I am concerned .How about Aspirin and Mylanta ?

Regards

Bill

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I make sure I know what antibiotics is for.I find that my immune system is very impaired and i get frequent urinary and kidney infections and don't take antibiotics unless I have to.Once the kidney pain gets bad it is time for antibiotics.

Gail

-----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of VickieGSent: August 27, 2007 1:46 PMTo: HepatitisCSupportGroupForDummies Subject: RE: feverGail, dr's make mistakes, too. You are closest to your medical problems. Make sure that what is prescribed for you makes sense for you. When my daughter was a teen, a dr. prescribed something for her, then a week later changed the prescription to something else. I asked my daughter if she was to continue the first one or stop taking it. She didn't know. I had to call the dr's office to find out. I was told to discontinue the first one. Otherwise, she may have hurt herself taking both prescriptions. Hugs. VGgail wrote:

I have been on antibiotics many times and never been told it is bad for the liver.I feel that if the doctor thinks you should be on an antibiotic then you should.

Gail

-----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of SegalSent: August 26, 2007 12:01 PMTo: HepatitisCSupportGroupForDummies Subject: Re: fever

How does Pentilcilin or their direvitives effect the liver ?

Regards

Bill

RE: fever

I use tylenol for fever.

Gail

-----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of SegalSent: August 26, 2007 1:09 AMTo: HepatitisCSupportGroupForDummies Subject: fever

What can I use for fever> I am not on TX but I am concerned .How about Aspirin and Mylanta ?

Regards

Bill

Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center.

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  • 4 weeks later...

We've been through that a number of times- mostly prior to IVIG.

Peace be with you,

Pattie

" Each small task of everyday life is a part of the harmony of the universe. "

~St. Therese of Lisieux

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Hi Jodi,

This has been the case for my daughter almost all the time ever since

she has been off IVIG since April. We just started keeping a journal

too. Her temperature runs 99.5 up to 100.9 .....sometimes normal

though too. She can tell though when she has an elevated temperature.

When she gets flat-out sick (like with pneumonia) it goes way up from

there though.

>

> Hi all thanks for all of the information. I have probably asked

this already, but I am very absent-minded these days. Does anyone

experience their child having a low grade temperature all the time?

has been running a low grade fever. His normal temp is like

97, but he has been running high 99 to 101. The doctors have told us

to keep a journal, so I am. Just wondering what everyone else has

experienced.

>

> Jodi

>

>

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

> Pinpoint customers who are looking for what you sell.

>

>

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We go through that with my daughter Sasha.

So far - they just decided that her temps being between 100.4-101 and

sometimes above is just HER and nothing else.

We took her temps for a month - 2 x a day - between 7-8 a.m. and

between 7-8 p.m.

She was 95.1 - 98.0 or so on average in the a.m. and between 100.4-

101 average at night.

I wish I had an answer for you - we are looking for one for us

too.....

Thanks for posting this. I posted this type of question a while back

and didn't get any responses - so I am very glad to read some more on

this subject!

Take Care

Stef

>

> Hi all thanks for all of the information. I have probably asked

this already, but I am very absent-minded these days. Does anyone

experience their child having a low grade temperature all the time?

has been running a low grade fever. His normal temp is like

97, but he has been running high 99 to 101. The doctors have told us

to keep a journal, so I am. Just wondering what everyone else has

experienced.

>

> Jodi

>

>

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

> Pinpoint customers who are looking for what you sell.

>

>

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We are newly diagnoised...he just finished with a round of antibiotics...he has

always been consistnet with 97...since he started school in August we have had

fever. I wonder if your norm can change.

" picasso.moon " <picasso.moon@...> wrote: We go through that with

my daughter Sasha.

So far - they just decided that her temps being between 100.4-101 and

sometimes above is just HER and nothing else.

We took her temps for a month - 2 x a day - between 7-8 a.m. and

between 7-8 p.m.

She was 95.1 - 98.0 or so on average in the a.m. and between 100.4-

101 average at night.

I wish I had an answer for you - we are looking for one for us

too.....

Thanks for posting this. I posted this type of question a while back

and didn't get any responses - so I am very glad to read some more on

this subject!

Take Care

Stef

>

> Hi all thanks for all of the information. I have probably asked

this already, but I am very absent-minded these days. Does anyone

experience their child having a low grade temperature all the time?

has been running a low grade fever. His normal temp is like

97, but he has been running high 99 to 101. The doctors have told us

to keep a journal, so I am. Just wondering what everyone else has

experienced.

>

> Jodi

>

>

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

> Pinpoint customers who are looking for what you sell.

>

>

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We have the opposite problem - my son doesn't get a fever even with

full-blown pneumonia and a WBC of 60. For us, a slight fever (99) means

that he is fighting a infection and we start a full course of antibiotics

(in addition to his daily dose of Septra, usually Clinda) and depending on

what else is going on (not eating, lethargic, abdominal or chest pain) we

head to emerg.

Our docs have told us to watch for the " other " signs, not just temp, and

know your kid. These are better indications that something is wrong than

just a themometer reading.

Kim, mom to , 5 (probably Hyper IgE - Job Syndrome)

>From: Jodi Tyra <tyrajodi@...>

>Reply-

>

>Subject: Re: Re: Fever

>Date: Tue, 25 Sep 2007 19:17:29 -0700 (PDT)

>

>We are newly diagnoised...he just finished with a round of antibiotics...he

>has always been consistnet with 97...since he started school in August we

>have had fever. I wonder if your norm can change.

>

> " picasso.moon " <picasso.moon@...> wrote: We go through that

>with my daughter Sasha.

>

>So far - they just decided that her temps being between 100.4-101 and

>sometimes above is just HER and nothing else.

>

>We took her temps for a month - 2 x a day - between 7-8 a.m. and

>between 7-8 p.m.

>

>She was 95.1 - 98.0 or so on average in the a.m. and between 100.4-

>101 average at night.

>

>I wish I had an answer for you - we are looking for one for us

>too.....

>

>Thanks for posting this. I posted this type of question a while back

>and didn't get any responses - so I am very glad to read some more on

>this subject!

>Take Care

>Stef

>

>

> >

> > Hi all thanks for all of the information. I have probably asked

>this already, but I am very absent-minded these days. Does anyone

>experience their child having a low grade temperature all the time?

> has been running a low grade fever. His normal temp is like

>97, but he has been running high 99 to 101. The doctors have told us

>to keep a journal, so I am. Just wondering what everyone else has

>experienced.

> >

> > Jodi

> >

> >

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

> > Pinpoint customers who are looking for what you sell.

> >

> >

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We've got that issue,too-with cellulitis so bad they thought he had a joint

effusion, J never ran a temp..ditto for ear infections.

We've always got to be on our toes.

Peace be with you,

Pattie

" Each small task of everyday life is a part of the harmony of the universe. "

~St. Therese of Lisieux

We have the opposite problem - my son doesn't get a fever even with

full-blown pneumonia and a WBC of 60. For us, a slight fever (99) means

that he is fighting a infection and we start a full course of antibiotics

(in addition to his daily dose of Septra, usually Clinda) and depending on

what else is going on (not eating, lethargic, abdominal or chest pain) we

head to emerg.

Our docs have told us to watch for the " other " signs, not just temp, and

know your kid. These are better indications that something is wrong than

just a themometer reading.

Kim, mom to , 5 (probably Hyper IgE - Job Syndrome)

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has autonomic nervous system dysfunction, so has poor temperature

regulation- cellutis-no fever, sinus infections-no fever, ear infections-no

fever, bacteremia-mild fever.

Temperature is a poor indicator of illness for us

- in CT- mom to sEan 5 years 10 months

________________________________

From: [mailto: ] On Behalf Of Pattie

Curran

Sent: Wednesday, September 26, 2007 11:04 AM

Subject: RE: Re: Fever

We've got that issue,too-with cellulitis so bad they thought he had a joint

effusion, J never ran a temp..ditto for ear infections.

We've always got to be on our toes.

Peace be with you,

Pattie

" Each small task of everyday life is a part of the harmony of the universe. "

~St. Therese of Lisieux

We have the opposite problem - my son doesn't get a fever even with

full-blown pneumonia and a WBC of 60. For us, a slight fever (99) means

that he is fighting a infection and we start a full course of antibiotics

(in addition to his daily dose of Septra, usually Clinda) and depending on

what else is going on (not eating, lethargic, abdominal or chest pain) we

head to emerg.

Our docs have told us to watch for the " other " signs, not just temp, and

know your kid. These are better indications that something is wrong than

just a themometer reading.

Kim, mom to , 5 (probably Hyper IgE - Job Syndrome)

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Hi Jodi, No suprise to say that Gabby has the same problem with fever. She ran

the same low temps for so long I stopped taking it because nothing ever

happened. With her if it was a problem something would have happened. I can't

believe how many similar issues our kids have. The only advice my doctor said

was when I take her temp to NOT use an ear thermometer. If you want it to be

accurate, rectal. No one is a fan of that but apparently that is the most

consistant place to check. The fevers come and go and little else happens. Still

random hives and much belly pain. Still not infusing. The doctor said also to

journal. Be sure to note activity at the time. Have had more humid days here

which seem to give her trouble. Glad we all have each other to bounce ideas off

of.

Kyla

Jodi Tyra <tyrajodi@...> wrote:

Hi all thanks for all of the information. I have probably asked this

already, but I am very absent-minded these days. Does anyone experience their

child having a low grade temperature all the time? has been running a

low grade fever. His normal temp is like 97, but he has been running high 99 to

101. The doctors have told us to keep a journal, so I am. Just wondering what

everyone else has experienced.

Jodi

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

Pinpoint customers who are looking for what you sell.

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Hey good to hear from you again. Do you give Gabby Tylenol everytime she has a

fever? Right now is asleep for the night...has been asleep since 4:00.

He will sleep all night...however he has a fever. I have been giving him

Tylenol or Motrin, which ever I have at the moment...I am scared to give him

Tylenol all the time due to the side effects with the kidneys and then getting

rebound headaches from taking it...I don't know what to do...I am

journaling...we are also monitoring his oxygen level after PE...it is quite low,

verifying the need for a treatment.

Jodi

Kyla Burg <kyla_burg@...> wrote:

Hi Jodi, No suprise to say that Gabby has the same problem with fever.

She ran the same low temps for so long I stopped taking it because nothing ever

happened. With her if it was a problem something would have happened. I can't

believe how many similar issues our kids have. The only advice my doctor said

was when I take her temp to NOT use an ear thermometer. If you want it to be

accurate, rectal. No one is a fan of that but apparently that is the most

consistant place to check. The fevers come and go and little else happens. Still

random hives and much belly pain. Still not infusing. The doctor said also to

journal. Be sure to note activity at the time. Have had more humid days here

which seem to give her trouble. Glad we all have each other to bounce ideas off

of.

Kyla

Jodi Tyra <tyrajodi@...> wrote:

Hi all thanks for all of the information. I have probably asked this already,

but I am very absent-minded these days. Does anyone experience their child

having a low grade temperature all the time? has been running a low

grade fever. His normal temp is like 97, but he has been running high 99 to 101.

The doctors have told us to keep a journal, so I am. Just wondering what

everyone else has experienced.

Jodi

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

Pinpoint customers who are looking for what you sell.

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Generally it is not necessary to give Tylenol or Advil unless the temp is over

101 and some docs even push it to 102. It is believed by many doctors that a

fever has a purpose of burning out whatever the issue is. I generally do not

give anything for a low grade fever.<100.8.

I only give a med if my kids are really uncomfortable or irritable. Or if

there is some sort of inflammation that I am aware of such as an infected wound

or something. I also use alternating of tylenol and advil when we have a high

fever. It seems to work better and has broader symptom control.

Meds can also mask other symptoms or give a child more energy when they

should be resting. I think the body has some natural ways of using the fever to

control the infection am more likely to give a warm/tepid bath or use cool

compresses than to give meds.

My daughter who does not have a PID but does have several congenital anomalies

had a fever for over 18 months spiking as high as 104. We eventually found out

she had a duplicate renal system or in other words she has 3 kidneys and

ureters.

Other things we checked were urines, CBCs and sed rates to make sure nothing

was being missed.

I know it is really tough when you do not know what is going on and a chronic

fever is so tiring. I will be praying for your kids.

BARBIE mom to Lucas 11, CVID, Bipolar, SubQ IG since he was 4.

Jodi Tyra <tyrajodi@...> wrote:

Hey good to hear from you again. Do you give Gabby Tylenol everytime

she has a fever? Right now is asleep for the night...has been asleep

since 4:00. He will sleep all night...however he has a fever. I have been giving

him Tylenol or Motrin, which ever I have at the moment...I am scared to give him

Tylenol all the time due to the side effects with the kidneys and then getting

rebound headaches from taking it...I don't know what to do...I am

journaling...we are also monitoring his oxygen level after PE...it is quite low,

verifying the need for a treatment.

Jodi

Kyla Burg <kyla_burg@...> wrote:

Hi Jodi, No suprise to say that Gabby has the same problem with fever. She ran

the same low temps for so long I stopped taking it because nothing ever

happened. With her if it was a problem something would have happened. I can't

believe how many similar issues our kids have. The only advice my doctor said

was when I take her temp to NOT use an ear thermometer. If you want it to be

accurate, rectal. No one is a fan of that but apparently that is the most

consistant place to check. The fevers come and go and little else happens. Still

random hives and much belly pain. Still not infusing. The doctor said also to

journal. Be sure to note activity at the time. Have had more humid days here

which seem to give her trouble. Glad we all have each other to bounce ideas off

of.

Kyla

Jodi Tyra <tyrajodi@...> wrote:

Hi all thanks for all of the information. I have probably asked this already,

but I am very absent-minded these days. Does anyone experience their child

having a low grade temperature all the time? has been running a low

grade fever. His normal temp is like 97, but he has been running high 99 to 101.

The doctors have told us to keep a journal, so I am. Just wondering what

everyone else has experienced.

Jodi

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

Pinpoint customers who are looking for what you sell.

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Hey Jodi,

I initially gave Gabby Motrin for her fever then

she had the fever for so long I stopped giving it to

her. You can only give it to them for so long. I just

watched and made sure that the fever didn't go up any

highr than 101. Eventually she didn't have a fever and

then a few days later the fever would be back. She did

not show any other symptoms. She was functioning

normally. Does receive asthma meds at school

at all? I have a doctor order for le to have

her Albuterol either before Gym class or after. She

also can have it as needed. She lets the teachers know

when she is having a problem. I have spare meds and

her spacer at school so they have it. I never give

Gabby Tylenol( I had to alternate both once when her

fever was 104-105 with Pneumonia). I have always given

my girls Motrin. Hope this helps you. Best wishes

Kyla

--- Jodi Tyra <tyrajodi@...> wrote:

> Hey good to hear from you again. Do you give Gabby

> Tylenol everytime she has a fever? Right now

> is asleep for the night...has been asleep

> since 4:00. He will sleep all night...however he

> has a fever. I have been giving him Tylenol or

> Motrin, which ever I have at the moment...I am

> scared to give him Tylenol all the time due to the

> side effects with the kidneys and then getting

> rebound headaches from taking it...I don't know what

> to do...I am journaling...we are also monitoring his

> oxygen level after PE...it is quite low, verifying

> the need for a treatment.

>

> Jodi

>

> Kyla Burg <kyla_burg@...> wrote:

> Hi Jodi, No suprise to say that Gabby has

> the same problem with fever. She ran the same low

> temps for so long I stopped taking it because

> nothing ever happened. With her if it was a problem

> something would have happened. I can't believe how

> many similar issues our kids have. The only advice

> my doctor said was when I take her temp to NOT use

> an ear thermometer. If you want it to be accurate,

> rectal. No one is a fan of that but apparently that

> is the most consistant place to check. The fevers

> come and go and little else happens. Still random

> hives and much belly pain. Still not infusing. The

> doctor said also to journal. Be sure to note

> activity at the time. Have had more humid days here

> which seem to give her trouble. Glad we all have

> each other to bounce ideas off of.

> Kyla

>

> Jodi Tyra <tyrajodi@...> wrote:

> Hi all thanks for all of the information. I have

> probably asked this already, but I am very

> absent-minded these days. Does anyone experience

> their child having a low grade temperature all the

> time? has been running a low grade fever.

> His normal temp is like 97, but he has been running

> high 99 to 101. The doctors have told us to keep a

> journal, so I am. Just wondering what everyone else

> has experienced.

>

> Jodi

>

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

> Pinpoint customers who are looking for what you

> sell.

>

> [Non-text portions of this message have been

> removed]

>

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

> Luggage? GPS? Comic books?

> Check out fitting gifts for grads at Search.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

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

> Got a little couch potato?

> Check out fun summer activities for kids.

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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Hi Kyla, I am so glad that we have this group. I don't get as stressed when

stuff happens, because I know that it is happening to all of us. Yes, he does

take his medication at school, just Albuterol and sometimes Hydroxozine as

needed. We were doing a treatment twice a day, but have cut back to right after

PE since that is when the Oxygen levels tends to dip really low. I guess I will

continue with the journal and see what they tell me when we go next week.

Thanks for the input.

Hope you have a great Friday.

Jodi

Kyla Burg <kyla_burg@...> wrote:

Hey Jodi,

I initially gave Gabby Motrin for her fever then

she had the fever for so long I stopped giving it to

her. You can only give it to them for so long. I just

watched and made sure that the fever didn't go up any

highr than 101. Eventually she didn't have a fever and

then a few days later the fever would be back. She did

not show any other symptoms. She was functioning

normally. Does receive asthma meds at school

at all? I have a doctor order for le to have

her Albuterol either before Gym class or after. She

also can have it as needed. She lets the teachers know

when she is having a problem. I have spare meds and

her spacer at school so they have it. I never give

Gabby Tylenol( I had to alternate both once when her

fever was 104-105 with Pneumonia). I have always given

my girls Motrin. Hope this helps you. Best wishes

Kyla

--- Jodi Tyra <tyrajodi@...> wrote:

> Hey good to hear from you again. Do you give Gabby

> Tylenol everytime she has a fever? Right now

> is asleep for the night...has been asleep

> since 4:00. He will sleep all night...however he

> has a fever. I have been giving him Tylenol or

> Motrin, which ever I have at the moment...I am

> scared to give him Tylenol all the time due to the

> side effects with the kidneys and then getting

> rebound headaches from taking it...I don't know what

> to do...I am journaling...we are also monitoring his

> oxygen level after PE...it is quite low, verifying

> the need for a treatment.

>

> Jodi

>

> Kyla Burg <kyla_burg@...> wrote:

> Hi Jodi, No suprise to say that Gabby has

> the same problem with fever. She ran the same low

> temps for so long I stopped taking it because

> nothing ever happened. With her if it was a problem

> something would have happened. I can't believe how

> many similar issues our kids have. The only advice

> my doctor said was when I take her temp to NOT use

> an ear thermometer. If you want it to be accurate,

> rectal. No one is a fan of that but apparently that

> is the most consistant place to check. The fevers

> come and go and little else happens. Still random

> hives and much belly pain. Still not infusing. The

> doctor said also to journal. Be sure to note

> activity at the time. Have had more humid days here

> which seem to give her trouble. Glad we all have

> each other to bounce ideas off of.

> Kyla

>

> Jodi Tyra <tyrajodi@...> wrote:

> Hi all thanks for all of the information. I have

> probably asked this already, but I am very

> absent-minded these days. Does anyone experience

> their child having a low grade temperature all the

> time? has been running a low grade fever.

> His normal temp is like 97, but he has been running

> high 99 to 101. The doctors have told us to keep a

> journal, so I am. Just wondering what everyone else

> has experienced.

>

> Jodi

>

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

> Pinpoint customers who are looking for what you

> sell.

>

> [Non-text portions of this message have been

> removed]

>

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

> Luggage? GPS? Comic books?

> Check out fitting gifts for grads at Search.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

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

> Got a little couch potato?

> Check out fun summer activities for kids.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Got a little couch potato?

Check out fun summer activities for kids.

http://search./search?fr=oni_on_mail & p=summer+activities+for+kids & cs=bz

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

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Thanks Barbara for the prayers and advice. I do agree that Tylenol or Advil

isn't necessary all the time, while he is at school, I have to keep the fever

down. Even though they know that his temperature will flucuate if it gets over

100.5 he has to be sent home. I can't afford that and neither can he for

academic reasons. We were told to live as normal a life as possible. It is all

so contradicting in some aspects. Who really knows. We are journaling for our

next visit.

Since this is occuring, would you as a mother request he be on antibiotics for

a long time period?

Barbara Jimenez <mother5590@...> wrote:

Generally it is not necessary to give Tylenol or Advil unless the temp

is over 101 and some docs even push it to 102. It is believed by many doctors

that a fever has a purpose of burning out whatever the issue is. I generally do

not give anything for a low grade fever.<100.8.

I only give a med if my kids are really uncomfortable or irritable. Or if there

is some sort of inflammation that I am aware of such as an infected wound or

something. I also use alternating of tylenol and advil when we have a high

fever. It seems to work better and has broader symptom control.

Meds can also mask other symptoms or give a child more energy when they should

be resting. I think the body has some natural ways of using the fever to control

the infection am more likely to give a warm/tepid bath or use cool compresses

than to give meds.

My daughter who does not have a PID but does have several congenital anomalies

had a fever for over 18 months spiking as high as 104. We eventually found out

she had a duplicate renal system or in other words she has 3 kidneys and

ureters.

Other things we checked were urines, CBCs and sed rates to make sure nothing was

being missed.

I know it is really tough when you do not know what is going on and a chronic

fever is so tiring. I will be praying for your kids.

BARBIE mom to Lucas 11, CVID, Bipolar, SubQ IG since he was 4.

Jodi Tyra <tyrajodi@...> wrote:

Hey good to hear from you again. Do you give Gabby Tylenol everytime she has a

fever? Right now is asleep for the night...has been asleep since 4:00.

He will sleep all night...however he has a fever. I have been giving him Tylenol

or Motrin, which ever I have at the moment...I am scared to give him Tylenol all

the time due to the side effects with the kidneys and then getting rebound

headaches from taking it...I don't know what to do...I am journaling...we are

also monitoring his oxygen level after PE...it is quite low, verifying the need

for a treatment.

Jodi

Kyla Burg <kyla_burg@...> wrote:

Hi Jodi, No suprise to say that Gabby has the same problem with fever. She ran

the same low temps for so long I stopped taking it because nothing ever

happened. With her if it was a problem something would have happened. I can't

believe how many similar issues our kids have. The only advice my doctor said

was when I take her temp to NOT use an ear thermometer. If you want it to be

accurate, rectal. No one is a fan of that but apparently that is the most

consistant place to check. The fevers come and go and little else happens. Still

random hives and much belly pain. Still not infusing. The doctor said also to

journal. Be sure to note activity at the time. Have had more humid days here

which seem to give her trouble. Glad we all have each other to bounce ideas off

of.

Kyla

Jodi Tyra <tyrajodi@...> wrote:

Hi all thanks for all of the information. I have probably asked this already,

but I am very absent-minded these days. Does anyone experience their child

having a low grade temperature all the time? has been running a low

grade fever. His normal temp is like 97, but he has been running high 99 to 101.

The doctors have told us to keep a journal, so I am. Just wondering what

everyone else has experienced.

Jodi

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

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I do not remember what his issues were. Fill me in on what his diagnosis is and

if you have been on IVIG or Sub Q and what kind of lab work have they drawn

recently; Is he having any other symptoms?

Jodi Tyra <tyrajodi@...> wrote: Thanks Barbara for the prayers

and advice. I do agree that Tylenol or Advil isn't necessary all the time, while

he is at school, I have to keep the fever down. Even though they know that his

temperature will flucuate if it gets over 100.5 he has to be sent home. I can't

afford that and neither can he for academic reasons. We were told to live as

normal a life as possible. It is all so contradicting in some aspects. Who

really knows. We are journaling for our next visit.

Since this is occuring, would you as a mother request he be on antibiotics for a

long time period?

Barbara Jimenez <mother5590@...> wrote:

Generally it is not necessary to give Tylenol or Advil unless the temp is over

101 and some docs even push it to 102. It is believed by many doctors that a

fever has a purpose of burning out whatever the issue is. I generally do not

give anything for a low grade fever.<100.8.

I only give a med if my kids are really uncomfortable or irritable. Or if there

is some sort of inflammation that I am aware of such as an infected wound or

something. I also use alternating of tylenol and advil when we have a high

fever. It seems to work better and has broader symptom control.

Meds can also mask other symptoms or give a child more energy when they should

be resting. I think the body has some natural ways of using the fever to control

the infection am more likely to give a warm/tepid bath or use cool compresses

than to give meds.

My daughter who does not have a PID but does have several congenital anomalies

had a fever for over 18 months spiking as high as 104. We eventually found out

she had a duplicate renal system or in other words she has 3 kidneys and

ureters.

Other things we checked were urines, CBCs and sed rates to make sure nothing was

being missed.

I know it is really tough when you do not know what is going on and a chronic

fever is so tiring. I will be praying for your kids.

BARBIE mom to Lucas 11, CVID, Bipolar, SubQ IG since he was 4.

Jodi Tyra <tyrajodi@...> wrote:

Hey good to hear from you again. Do you give Gabby Tylenol everytime she has a

fever? Right now is asleep for the night...has been asleep since 4:00.

He will sleep all night...however he has a fever. I have been giving him Tylenol

or Motrin, which ever I have at the moment...I am scared to give him Tylenol all

the time due to the side effects with the kidneys and then getting rebound

headaches from taking it...I don't know what to do...I am journaling...we are

also monitoring his oxygen level after PE...it is quite low, verifying the need

for a treatment.

Jodi

Kyla Burg <kyla_burg@...> wrote:

Hi Jodi, No suprise to say that Gabby has the same problem with fever. She ran

the same low temps for so long I stopped taking it because nothing ever

happened. With her if it was a problem something would have happened. I can't

believe how many similar issues our kids have. The only advice my doctor said

was when I take her temp to NOT use an ear thermometer. If you want it to be

accurate, rectal. No one is a fan of that but apparently that is the most

consistant place to check. The fevers come and go and little else happens. Still

random hives and much belly pain. Still not infusing. The doctor said also to

journal. Be sure to note activity at the time. Have had more humid days here

which seem to give her trouble. Glad we all have each other to bounce ideas off

of.

Kyla

Jodi Tyra <tyrajodi@...> wrote:

Hi all thanks for all of the information. I have probably asked this already,

but I am very absent-minded these days. Does anyone experience their child

having a low grade temperature all the time? has been running a low

grade fever. His normal temp is like 97, but he has been running high 99 to 101.

The doctors have told us to keep a journal, so I am. Just wondering what

everyone else has experienced.

Jodi

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

Pinpoint customers who are looking for what you sell.

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He has hypogammaglobulinemia...he also has asthma, allergies, heart murmurs. We

went to the doctor today, sinus infection...has three different bacteria cells

in the nasal swab they did. They put him on Omnicef for ten days. His Ige and

IgM levels were below normal...he also had low titers on his immunzations and

was recently reimmunized. He goes monday to have a blood draw to check his

titers again and to check the cell functions for the immune system.

Barbara Jimenez <mother5590@...> wrote: I do not remember what

his issues were. Fill me in on what his diagnosis is and if you have been on

IVIG or Sub Q and what kind of lab work have they drawn recently; Is he having

any other symptoms?

Jodi Tyra <tyrajodi@...> wrote: Thanks Barbara for the prayers and advice.

I do agree that Tylenol or Advil isn't necessary all the time, while he is at

school, I have to keep the fever down. Even though they know that his

temperature will flucuate if it gets over 100.5 he has to be sent home. I can't

afford that and neither can he for academic reasons. We were told to live as

normal a life as possible. It is all so contradicting in some aspects. Who

really knows. We are journaling for our next visit.

Since this is occuring, would you as a mother request he be on antibiotics for a

long time period?

Barbara Jimenez <mother5590@...> wrote:

Generally it is not necessary to give Tylenol or Advil unless the temp is over

101 and some docs even push it to 102. It is believed by many doctors that a

fever has a purpose of burning out whatever the issue is. I generally do not

give anything for a low grade fever.<100.8.

I only give a med if my kids are really uncomfortable or irritable. Or if there

is some sort of inflammation that I am aware of such as an infected wound or

something. I also use alternating of tylenol and advil when we have a high

fever. It seems to work better and has broader symptom control.

Meds can also mask other symptoms or give a child more energy when they should

be resting. I think the body has some natural ways of using the fever to control

the infection am more likely to give a warm/tepid bath or use cool compresses

than to give meds.

My daughter who does not have a PID but does have several congenital anomalies

had a fever for over 18 months spiking as high as 104. We eventually found out

she had a duplicate renal system or in other words she has 3 kidneys and

ureters.

Other things we checked were urines, CBCs and sed rates to make sure nothing was

being missed.

I know it is really tough when you do not know what is going on and a chronic

fever is so tiring. I will be praying for your kids.

BARBIE mom to Lucas 11, CVID, Bipolar, SubQ IG since he was 4.

Jodi Tyra <tyrajodi@...> wrote:

Hey good to hear from you again. Do you give Gabby Tylenol everytime she has a

fever? Right now is asleep for the night...has been asleep since 4:00.

He will sleep all night...however he has a fever. I have been giving him Tylenol

or Motrin, which ever I have at the moment...I am scared to give him Tylenol all

the time due to the side effects with the kidneys and then getting rebound

headaches from taking it...I don't know what to do...I am journaling...we are

also monitoring his oxygen level after PE...it is quite low, verifying the need

for a treatment.

Jodi

Kyla Burg <kyla_burg@...> wrote:

Hi Jodi, No suprise to say that Gabby has the same problem with fever. She ran

the same low temps for so long I stopped taking it because nothing ever

happened. With her if it was a problem something would have happened. I can't

believe how many similar issues our kids have. The only advice my doctor said

was when I take her temp to NOT use an ear thermometer. If you want it to be

accurate, rectal. No one is a fan of that but apparently that is the most

consistant place to check. The fevers come and go and little else happens. Still

random hives and much belly pain. Still not infusing. The doctor said also to

journal. Be sure to note activity at the time. Have had more humid days here

which seem to give her trouble. Glad we all have each other to bounce ideas off

of.

Kyla

Jodi Tyra <tyrajodi@...> wrote:

Hi all thanks for all of the information. I have probably asked this already,

but I am very absent-minded these days. Does anyone experience their child

having a low grade temperature all the time? has been running a low

grade fever. His normal temp is like 97, but he has been running high 99 to 101.

The doctors have told us to keep a journal, so I am. Just wondering what

everyone else has experienced.

Jodi

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

Pinpoint customers who are looking for what you sell.

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Share on other sites

From the way we have treated our son and they have very similar issues. except

that my son has hight IgE. It would make sense to put him on an Antibiotic

until you get things under control. It is generally a smaller dose and what it

does is keep the infections at bay so they do not take control. it sounds like

he is being treated now for an active infection. You might ask the doctor

whether propholactic antibiotics might be indicated after he finished this round

and all the testing is done. Then you can choose the course of treatment without

having a really really sick kiddo. In our case the sinus stuff always moved into

his chest and then we would get pneumonia; It sounds like the sinus infection

may be making him feel so yuchy I have been told by several ENTs that sinus

infections do not cause fever. I do not know but I would expect it is the lungs

that cause the fever. Sinus' are encapsulated so they say that they do not get

into the blood system so do not cause a

fever; I do not know except when our little ones feel so bad we just want to

give them all the energy we can. Does this answer your questions?

BARBIE

Jodi Tyra <tyrajodi@...> wrote:

He has hypogammaglobulinemia...he also has asthma, allergies, heart

murmurs. We went to the doctor today, sinus infection...has three different

bacteria cells in the nasal swab they did. They put him on Omnicef for ten days.

His Ige and IgM levels were below normal...he also had low titers on his

immunzations and was recently reimmunized. He goes monday to have a blood draw

to check his titers again and to check the cell functions for the immune system.

Barbara Jimenez <mother5590@...> wrote: I do not remember what his issues

were. Fill me in on what his diagnosis is and if you have been on IVIG or Sub Q

and what kind of lab work have they drawn recently; Is he having any other

symptoms?

Jodi Tyra <tyrajodi@...> wrote: Thanks Barbara for the prayers and advice.

I do agree that Tylenol or Advil isn't necessary all the time, while he is at

school, I have to keep the fever down. Even though they know that his

temperature will flucuate if it gets over 100.5 he has to be sent home. I can't

afford that and neither can he for academic reasons. We were told to live as

normal a life as possible. It is all so contradicting in some aspects. Who

really knows. We are journaling for our next visit.

Since this is occuring, would you as a mother request he be on antibiotics for a

long time period?

Barbara Jimenez <mother5590@...> wrote:

Generally it is not necessary to give Tylenol or Advil unless the temp is over

101 and some docs even push it to 102. It is believed by many doctors that a

fever has a purpose of burning out whatever the issue is. I generally do not

give anything for a low grade fever.<100.8.

I only give a med if my kids are really uncomfortable or irritable. Or if there

is some sort of inflammation that I am aware of such as an infected wound or

something. I also use alternating of tylenol and advil when we have a high

fever. It seems to work better and has broader symptom control.

Meds can also mask other symptoms or give a child more energy when they should

be resting. I think the body has some natural ways of using the fever to control

the infection am more likely to give a warm/tepid bath or use cool compresses

than to give meds.

My daughter who does not have a PID but does have several congenital anomalies

had a fever for over 18 months spiking as high as 104. We eventually found out

she had a duplicate renal system or in other words she has 3 kidneys and

ureters.

Other things we checked were urines, CBCs and sed rates to make sure nothing was

being missed.

I know it is really tough when you do not know what is going on and a chronic

fever is so tiring. I will be praying for your kids.

BARBIE mom to Lucas 11, CVID, Bipolar, SubQ IG since he was 4.

Jodi Tyra <tyrajodi@...> wrote:

Hey good to hear from you again. Do you give Gabby Tylenol everytime she has a

fever? Right now is asleep for the night...has been asleep since 4:00.

He will sleep all night...however he has a fever. I have been giving him Tylenol

or Motrin, which ever I have at the moment...I am scared to give him Tylenol all

the time due to the side effects with the kidneys and then getting rebound

headaches from taking it...I don't know what to do...I am journaling...we are

also monitoring his oxygen level after PE...it is quite low, verifying the need

for a treatment.

Jodi

Kyla Burg <kyla_burg@...> wrote:

Hi Jodi, No suprise to say that Gabby has the same problem with fever. She ran

the same low temps for so long I stopped taking it because nothing ever

happened. With her if it was a problem something would have happened. I can't

believe how many similar issues our kids have. The only advice my doctor said

was when I take her temp to NOT use an ear thermometer. If you want it to be

accurate, rectal. No one is a fan of that but apparently that is the most

consistant place to check. The fevers come and go and little else happens. Still

random hives and much belly pain. Still not infusing. The doctor said also to

journal. Be sure to note activity at the time. Have had more humid days here

which seem to give her trouble. Glad we all have each other to bounce ideas off

of.

Kyla

Jodi Tyra <tyrajodi@...> wrote:

Hi all thanks for all of the information. I have probably asked this already,

but I am very absent-minded these days. Does anyone experience their child

having a low grade temperature all the time? has been running a low

grade fever. His normal temp is like 97, but he has been running high 99 to 101.

The doctors have told us to keep a journal, so I am. Just wondering what

everyone else has experienced.

Jodi

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

Pinpoint customers who are looking for what you sell.

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Share on other sites

Barbara, this all does make sense...I really appreciate your advice. Now my

question, the immunologist we are seeing for all the testing only wants to see

in back in six month to recheck levels and she will call with the results from

Monday, we see an immunologist who isn't affiliated with Texas Childrens but is

communicating with the doctors. Can I make the suggestion for him to be put on

a propholatic antibiotic? Do I have the right to push for this...I am new to

this so I am not sure how far to push to get what we want.

Jodi

Barbara Jimenez <mother5590@...> wrote:

From the way we have treated our son and they have very similar

issues. except that my son has hight IgE. It would make sense to put him on an

Antibiotic until you get things under control. It is generally a smaller dose

and what it does is keep the infections at bay so they do not take control. it

sounds like he is being treated now for an active infection. You might ask the

doctor whether propholactic antibiotics might be indicated after he finished

this round and all the testing is done. Then you can choose the course of

treatment without having a really really sick kiddo. In our case the sinus stuff

always moved into his chest and then we would get pneumonia; It sounds like the

sinus infection may be making him feel so yuchy I have been told by several ENTs

that sinus infections do not cause fever. I do not know but I would expect it is

the lungs that cause the fever. Sinus' are encapsulated so they say that they do

not get into the blood system so do not

cause a

fever; I do not know except when our little ones feel so bad we just want to

give them all the energy we can. Does this answer your questions?

BARBIE

Jodi Tyra <tyrajodi@...> wrote:

He has hypogammaglobulinemia...he also has asthma, allergies, heart murmurs. We

went to the doctor today, sinus infection...has three different bacteria cells

in the nasal swab they did. They put him on Omnicef for ten days. His Ige and

IgM levels were below normal...he also had low titers on his immunzations and

was recently reimmunized. He goes monday to have a blood draw to check his

titers again and to check the cell functions for the immune system.

Barbara Jimenez <mother5590@...> wrote: I do not remember what his issues

were. Fill me in on what his diagnosis is and if you have been on IVIG or Sub Q

and what kind of lab work have they drawn recently; Is he having any other

symptoms?

Jodi Tyra <tyrajodi@...> wrote: Thanks Barbara for the prayers and advice.

I do agree that Tylenol or Advil isn't necessary all the time, while he is at

school, I have to keep the fever down. Even though they know that his

temperature will flucuate if it gets over 100.5 he has to be sent home. I can't

afford that and neither can he for academic reasons. We were told to live as

normal a life as possible. It is all so contradicting in some aspects. Who

really knows. We are journaling for our next visit.

Since this is occuring, would you as a mother request he be on antibiotics for a

long time period?

Barbara Jimenez <mother5590@...> wrote:

Generally it is not necessary to give Tylenol or Advil unless the temp is over

101 and some docs even push it to 102. It is believed by many doctors that a

fever has a purpose of burning out whatever the issue is. I generally do not

give anything for a low grade fever.<100.8.

I only give a med if my kids are really uncomfortable or irritable. Or if there

is some sort of inflammation that I am aware of such as an infected wound or

something. I also use alternating of tylenol and advil when we have a high

fever. It seems to work better and has broader symptom control.

Meds can also mask other symptoms or give a child more energy when they should

be resting. I think the body has some natural ways of using the fever to control

the infection am more likely to give a warm/tepid bath or use cool compresses

than to give meds.

My daughter who does not have a PID but does have several congenital anomalies

had a fever for over 18 months spiking as high as 104. We eventually found out

she had a duplicate renal system or in other words she has 3 kidneys and

ureters.

Other things we checked were urines, CBCs and sed rates to make sure nothing was

being missed.

I know it is really tough when you do not know what is going on and a chronic

fever is so tiring. I will be praying for your kids.

BARBIE mom to Lucas 11, CVID, Bipolar, SubQ IG since he was 4.

Jodi Tyra <tyrajodi@...> wrote:

Hey good to hear from you again. Do you give Gabby Tylenol everytime she has a

fever? Right now is asleep for the night...has been asleep since 4:00.

He will sleep all night...however he has a fever. I have been giving him Tylenol

or Motrin, which ever I have at the moment...I am scared to give him Tylenol all

the time due to the side effects with the kidneys and then getting rebound

headaches from taking it...I don't know what to do...I am journaling...we are

also monitoring his oxygen level after PE...it is quite low, verifying the need

for a treatment.

Jodi

Kyla Burg <kyla_burg@...> wrote:

Hi Jodi, No suprise to say that Gabby has the same problem with fever. She ran

the same low temps for so long I stopped taking it because nothing ever

happened. With her if it was a problem something would have happened. I can't

believe how many similar issues our kids have. The only advice my doctor said

was when I take her temp to NOT use an ear thermometer. If you want it to be

accurate, rectal. No one is a fan of that but apparently that is the most

consistant place to check. The fevers come and go and little else happens. Still

random hives and much belly pain. Still not infusing. The doctor said also to

journal. Be sure to note activity at the time. Have had more humid days here

which seem to give her trouble. Glad we all have each other to bounce ideas off

of.

Kyla

Jodi Tyra <tyrajodi@...> wrote:

Hi all thanks for all of the information. I have probably asked this already,

but I am very absent-minded these days. Does anyone experience their child

having a low grade temperature all the time? has been running a low

grade fever. His normal temp is like 97, but he has been running high 99 to 101.

The doctors have told us to keep a journal, so I am. Just wondering what

everyone else has experienced.

Jodi

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

Pinpoint customers who are looking for what you sell.

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Jodi,

I am a Pediatric RN but what I mainly learned is from my kids and interacting

over time with their doctors. Most docs but not all have EGOS and they want to

be the ones to suggest things. Over the years I have found a few exceptions (

some at the IDF conference who were quite humble).

So the way I usually handle things is that :

1. I do my research and find out what the usual " standard of care " is. I may

look on line at treatments and their usual course, I may check with other

parents, I may get a second opinion and I may also check with IDF to see what

everyone else is doing. (Not to say our kids are all the same). I just want to

know what the research is and what has been successful in what circumstances.

2. I also want to be able to understand the docs to follow their train of

thought and figure out whether they know what they are talking about.;( I have

found that with PIDS many of the docs that are not actively treating PID kids

have very little knowlege of what the standards are. ( this also goes for the

nursing staff in infusion centers or even home health (some have no experience

in PEDS and some have not experience with Ig therapies.) So I may ask how many

patients they have on IVIg or Sub Q and how many of them are kids. (YOu can also

ask the staff.) Is it a Immunologist or a Allergist, or ID or Pediatrician they

all have different expertise. So it depends on who you are asking. I sometimes

went around one to get what I needed from another. but usually used each one as

the specialist they were.

3.So.... I would say something about my source of information and then ask

whether this " sounds reasonable " and " if not then " what would they suggest under

the circumstances.?

What you are going to find over time is that you need to become a team with

your childs doctors. You need to be able to make decisions " with them " since you

will know more about your child and almost as much as they do about " his

disease " (if not more). So you can ask for anything. The question is whether it

is the best for your child at that time and why.?

I know it sounds complicated but re-read this slowly and realize that what we

have to do is the research ourselves so that we can know what they are talking

about when they give us info. Then be able to make informed decisions about

their treatments. You are his BEST advocate since you know him and have the most

invested in him. The doctor only knows a tiny snapshot in his life. You will

need to keep advocating for him for years to come. whether you move or change

doctors or whatever. So get involved as you are doing, Ask lots of quesitons.

Keep a journal and notebook of his care, labs and meds. Learn everything that

you can and advocate for him. You know not being on it is making him feel

terrible and you just want him to get better and not get sicker. So ask what

needs to be done to get him the best quality of life as possible.

It sounds reasonable to me that he be on an antibiotic propholactically and it

is the standard of care in many places as a preventative of severe illness or

breakthrough illnesses. But ,to get that teamwork started you need to ask " what

does the doctor think and why? " What is their course of action after all of the

testing. (What is the plan?) Depending on what comes back. From what you have

said. He has all of the indications my doctor would use to start him on SubQ but

what else do they need to test for before that time or what other parameters

need to be met before you can do that? ( also keep in mind that treatment is

different in different parts of the country and for different age groups. And

per doctor preference.

So here is the very long answer to your question. I think it can give you

some things to think about and allow you to realize that this is your job to ask

questions and make suggestions for your child. YOU know what is best for your

child. That is quality of life under the circumstances.

Jodi Tyra <tyrajodi@...> wrote:

Barbara, this all does make sense...I really appreciate your advice.

Now my question, the immunologist we are seeing for all the testing only wants

to see in back in six month to recheck levels and she will call with the results

from Monday, we see an immunologist who isn't affiliated with Texas Childrens

but is communicating with the doctors. Can I make the suggestion for him to be

put on a propholatic antibiotic? Do I have the right to push for this...I am new

to this so I am not sure how far to push to get what we want.

Jodi

Barbara Jimenez <mother5590@...> wrote:

From the way we have treated our son and they have very similar issues. except

that my son has hight IgE. It would make sense to put him on an Antibiotic until

you get things under control. It is generally a smaller dose and what it does is

keep the infections at bay so they do not take control. it sounds like he is

being treated now for an active infection. You might ask the doctor whether

propholactic antibiotics might be indicated after he finished this round and all

the testing is done. Then you can choose the course of treatment without having

a really really sick kiddo. In our case the sinus stuff always moved into his

chest and then we would get pneumonia; It sounds like the sinus infection may be

making him feel so yuchy I have been told by several ENTs that sinus infections

do not cause fever. I do not know but I would expect it is the lungs that cause

the fever. Sinus' are encapsulated so they say that they do not get into the

blood system so do not

cause a

fever; I do not know except when our little ones feel so bad we just want to

give them all the energy we can. Does this answer your questions?

BARBIE

Jodi Tyra <tyrajodi@...> wrote:

He has hypogammaglobulinemia...he also has asthma, allergies, heart murmurs. We

went to the doctor today, sinus infection...has three different bacteria cells

in the nasal swab they did. They put him on Omnicef for ten days. His Ige and

IgM levels were below normal...he also had low titers on his immunzations and

was recently reimmunized. He goes monday to have a blood draw to check his

titers again and to check the cell functions for the immune system.

Barbara Jimenez <mother5590@...> wrote: I do not remember what his issues

were. Fill me in on what his diagnosis is and if you have been on IVIG or Sub Q

and what kind of lab work have they drawn recently; Is he having any other

symptoms?

Jodi Tyra <tyrajodi@...> wrote: Thanks Barbara for the prayers and advice.

I do agree that Tylenol or Advil isn't necessary all the time, while he is at

school, I have to keep the fever down. Even though they know that his

temperature will flucuate if it gets over 100.5 he has to be sent home. I can't

afford that and neither can he for academic reasons. We were told to live as

normal a life as possible. It is all so contradicting in some aspects. Who

really knows. We are journaling for our next visit.

Since this is occuring, would you as a mother request he be on antibiotics for a

long time period?

Barbara Jimenez <mother5590@...> wrote:

Generally it is not necessary to give Tylenol or Advil unless the temp is over

101 and some docs even push it to 102. It is believed by many doctors that a

fever has a purpose of burning out whatever the issue is. I generally do not

give anything for a low grade fever.<100.8.

I only give a med if my kids are really uncomfortable or irritable. Or if there

is some sort of inflammation that I am aware of such as an infected wound or

something. I also use alternating of tylenol and advil when we have a high

fever. It seems to work better and has broader symptom control.

Meds can also mask other symptoms or give a child more energy when they should

be resting. I think the body has some natural ways of using the fever to control

the infection am more likely to give a warm/tepid bath or use cool compresses

than to give meds.

My daughter who does not have a PID but does have several congenital anomalies

had a fever for over 18 months spiking as high as 104. We eventually found out

she had a duplicate renal system or in other words she has 3 kidneys and

ureters.

Other things we checked were urines, CBCs and sed rates to make sure nothing was

being missed.

I know it is really tough when you do not know what is going on and a chronic

fever is so tiring. I will be praying for your kids.

BARBIE mom to Lucas 11, CVID, Bipolar, SubQ IG since he was 4.

Jodi Tyra <tyrajodi@...> wrote:

Hey good to hear from you again. Do you give Gabby Tylenol everytime she has a

fever? Right now is asleep for the night...has been asleep since 4:00.

He will sleep all night...however he has a fever. I have been giving him Tylenol

or Motrin, which ever I have at the moment...I am scared to give him Tylenol all

the time due to the side effects with the kidneys and then getting rebound

headaches from taking it...I don't know what to do...I am journaling...we are

also monitoring his oxygen level after PE...it is quite low, verifying the need

for a treatment.

Jodi

Kyla Burg <kyla_burg@...> wrote:

Hi Jodi, No suprise to say that Gabby has the same problem with fever. She ran

the same low temps for so long I stopped taking it because nothing ever

happened. With her if it was a problem something would have happened. I can't

believe how many similar issues our kids have. The only advice my doctor said

was when I take her temp to NOT use an ear thermometer. If you want it to be

accurate, rectal. No one is a fan of that but apparently that is the most

consistant place to check. The fevers come and go and little else happens. Still

random hives and much belly pain. Still not infusing. The doctor said also to

journal. Be sure to note activity at the time. Have had more humid days here

which seem to give her trouble. Glad we all have each other to bounce ideas off

of.

Kyla

Jodi Tyra <tyrajodi@...> wrote:

Hi all thanks for all of the information. I have probably asked this already,

but I am very absent-minded these days. Does anyone experience their child

having a low grade temperature all the time? has been running a low

grade fever. His normal temp is like 97, but he has been running high 99 to 101.

The doctors have told us to keep a journal, so I am. Just wondering what

everyone else has experienced.

Jodi

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  • 11 months later...

If you always feel warm as well I'd check with a doctor. It's easy to write things off to be tired because of our various overscheduling issues, and it's easy to put everything else before our health. I'd take a little time to persue the reason and not let doctors give you a you're just tired answer considering how long this has been going on. It could be because of any number of low grade infections or a lingering virus.

Pat**************It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

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Yes, I feel well but seem to feel tired a lot. Not sure if it is because of not getting enough sleep along with having a 2 and 3 year old or if it is something else. I just always feel warm though.

From: pkennedy16@... <pkennedy16@...>Subject: Re: Fever Date: Thursday, September 4, 2008, 6:53 PM

My sister's and mine always run below 98.6. If I get up to 99 I know I'm sick. I suppose the opposite is also possible. Do you feel well?Pat************ **It's only a deal if it's where you want to go. Find your travel deal here.(http://information .travel.aol. com/deals? ncid=aoltrv00050 000000047)

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