Re: i think my daughter has

[Guest guest]

I also know how frustating it is to have a dr. tell you its just a " virus " .

Ava is 22 months and has been to the dr at least 25 times with a fever and

sore throat and mouth sores. She has had a T & A 3 weeks ago. and had another

episode last wed. and I took her to the Dr and he said its not its a

virus. Even though it just happened to fall on the day that her next fever was

due

and only had symptoms. So lol I just was venting.

[Guest guest]

Hi e,

I feel silly saying " welcome " to you since I to am also new to the group. I

just learned of a week and a half ago myself. My story sounds like yours,

my daughter just turned 2 and we just ended our 5th fever episode last week. A

friend emailed the link to this group and after reading several stories and

personal opinions, I made an appt. with an ID doctor for mid Dec. when Abby is

expected to spike a fever. It is so frustrating when a doctor tells you there

is nothing wrong with your child when apparantly there is? It is not normal for

a child to get fevers of 104+ once a month, every month. I have felt the way

you did, doubting myself and thinking I was just overly paranoid but after

joining this group, you realize that you are not CRAZY and doctors don't always

have the answers. It is our job to protect our children and ALWAYS go with your

gut. I hope you are put at ease by reading and educating yourself with the

information this group has to offer. Some

more serious than others but the min thing, you are not ALONE!!!!!! Good luck.

Shari; mom to Abby, 2, not yet diagnosed

e Kendall <brandie1024@...> wrote:

Hello everyone! My name is e and my oldest child, Caitlynn,

who is 4 1/2, gets fevers accompained by just one swollen lymph node

every 3-4 weeks. She has had these fevers for a few years, but I

didn't realize they were so routine until this past June when I

started writing the dates down on my calendar.

In the past, I have taken her to a pediatrician when she spiked a

fever. She never had any other complaints (stomachache, earache,

sore throat, cough, runny nose, etc.)The doc could never find

anything wrong with her and claimed that some kids just run high

fevers (Caite will run 104.5 at almost every episode)and that it was

just viral. Well, after the first few run ins like this I started

to feel like a hypochrodriac mom and quit taking her every time she

ran a fever. I would tell myself that I would wait until she showed

other sx, and then before I knew it, typically 4-5 days later, she

was fine.

We have recently had a new D.O. start practicing in their office.

Last month he had me get a CBC on her, which came up neg. No signs

of bacteria, wbc count was normal. She also had her first mouth

sore last month. Then this month I had to take her again for more

blood work along with a u/a c & s, which also came up negative. This

time her WBC was a little high, 14,500. He (the MD) is beside

himself and is referring us to infectious control along with a

rhumetologist. I live in Indianapolis, so I imagine she'll be going

to Riley, if any of you are familiar with them. I just learned

about last week during her last episode by researching

online. He's never heard of it and he thinks Caite should be seen

by these specialists before he treats her with prenisone d/t side

effects. My husband and I are beside ourselves. We just don't want

her to go through more tests if she doesn't have to. There's

nothing like holding your daughter down to get a blood draw

especially if you know it won't prove anything. I need advice on

what to teel her docs, because there's so much I don't know about

. My son will be 2 in Jan. and has had just 1 fever in his

life. Please give me some direction.

e Kendall

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

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[Guest guest]

Hi,

I believe we are ALL here to vent, it's easier for people to understand you

when they know what you are going through. Take care!

shari; mom of Abby, 2

merlydahl@... wrote:

I also know how frustating it is to have a dr. tell you its just a

" virus " .

Ava is 22 months and has been to the dr at least 25 times with a fever and

sore throat and mouth sores. She has had a T & A 3 weeks ago. and had another

episode last wed. and I took her to the Dr and he said its not its a

virus. Even though it just happened to fall on the day that her next fever was

due

and only had symptoms. So lol I just was venting.

[Guest guest]

Hi e,

My daughter is also Caitlyn. Recently my husband and I sat down and started

thinking about how long ago it was when she started the fevers. She was almost

5. She is now 11. I have been to so many PEDS and she has had all the blood work

done. My husband and I

are done putting her thru all this. There is no cure, there is no direct way

to diagnose, She is healthy other wise. I do not want to put her on steroids. I

have talked with one other person

who had a " fever " baby and he out grew them when he was about 12. So maybe

there is hope. Good Luck in what ever you deceide.

Michele

e Kendall <brandie1024@...> wrote:

Hello everyone! My name is e and my oldest child, Caitlynn,

who is 4 1/2, gets fevers accompained by just one swollen lymph node

every 3-4 weeks. She has had these fevers for a few years, but I

didn't realize they were so routine until this past June when I

started writing the dates down on my calendar.

In the past, I have taken her to a pediatrician when she spiked a

fever. She never had any other complaints (stomachache, earache,

sore throat, cough, runny nose, etc.)The doc could never find

anything wrong with her and claimed that some kids just run high

fevers (Caite will run 104.5 at almost every episode)and that it was

just viral. Well, after the first few run ins like this I started

to feel like a hypochrodriac mom and quit taking her every time she

ran a fever. I would tell myself that I would wait until she showed

other sx, and then before I knew it, typically 4-5 days later, she

was fine.

We have recently had a new D.O. start practicing in their office.

Last month he had me get a CBC on her, which came up neg. No signs

of bacteria, wbc count was normal. She also had her first mouth

sore last month. Then this month I had to take her again for more

blood work along with a u/a c & s, which also came up negative. This

time her WBC was a little high, 14,500. He (the MD) is beside

himself and is referring us to infectious control along with a

rhumetologist. I live in Indianapolis, so I imagine she'll be going

to Riley, if any of you are familiar with them. I just learned

about last week during her last episode by researching

online. He's never heard of it and he thinks Caite should be seen

by these specialists before he treats her with prenisone d/t side

effects. My husband and I are beside ourselves. We just don't want

her to go through more tests if she doesn't have to. There's

nothing like holding your daughter down to get a blood draw

especially if you know it won't prove anything. I need advice on

what to teel her docs, because there's so much I don't know about

. My son will be 2 in Jan. and has had just 1 fever in his

life. Please give me some direction.

e Kendall

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

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[Guest guest]

Michele ..

HAve you done genetics? Kiara was labelled and we have been told now that

it is not. and that at this point it is traps and familial cold without

genetics. But could be something more.

I wouldnt settle u ntil I knew that it was diagnosed by NIH

It sure changes a lot.

mom to Kiara 6 sick since 20 months

Re: i think my daughter has

Hi e,

My daughter is also Caitlyn. Recently my husband and I sat down and started

thinking about how long ago it was when she started the fevers. She was almost

5. She is now 11. I have been to so many PEDS and she has had all the blood work

done. My husband and I

are done putting her thru all this. There is no cure, there is no direct way

to diagnose, She is healthy other wise. I do not want to put her on steroids. I

have talked with one other person

who had a " fever " baby and he out grew them when he was about 12. So maybe

there is hope. Good Luck in what ever you deceide.

Michele

e Kendall <brandie1024@...> wrote:

Hello everyone! My name is e and my oldest child, Caitlynn,

who is 4 1/2, gets fevers accompained by just one swollen lymph node

every 3-4 weeks. She has had these fevers for a few years, but I

didn't realize they were so routine until this past June when I

started writing the dates down on my calendar.

In the past, I have taken her to a pediatrician when she spiked a

fever. She never had any other complaints (stomachache, earache,

sore throat, cough, runny nose, etc.)The doc could never find

anything wrong with her and claimed that some kids just run high

fevers (Caite will run 104.5 at almost every episode)and that it was

just viral. Well, after the first few run ins like this I started

to feel like a hypochrodriac mom and quit taking her every time she

ran a fever. I would tell myself that I would wait until she showed

other sx, and then before I knew it, typically 4-5 days later, she

was fine.

We have recently had a new D.O. start practicing in their office.

Last month he had me get a CBC on her, which came up neg. No signs

of bacteria, wbc count was normal. She also had her first mouth

sore last month. Then this month I had to take her again for more

blood work along with a u/a c & s, which also came up negative. This

time her WBC was a little high, 14,500. He (the MD) is beside

himself and is referring us to infectious control along with a

rhumetologist. I live in Indianapolis, so I imagine she'll be going

to Riley, if any of you are familiar with them. I just learned

about last week during her last episode by researching

online. He's never heard of it and he thinks Caite should be seen

by these specialists before he treats her with prenisone d/t side

effects. My husband and I are beside ourselves. We just don't want

her to go through more tests if she doesn't have to. There's

nothing like holding your daughter down to get a blood draw

especially if you know it won't prove anything. I need advice on

what to teel her docs, because there's so much I don't know about

. My son will be 2 in Jan. and has had just 1 fever in his

life. Please give me some direction.

e Kendall

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

Cheap Talk? Check out Messenger's low PC-to-Phone call rates.

[Guest guest]

e,

Have you seen a pediatric rheumatologist or and ID? We were amazed

how quickly all of our questions were answered when me met with the

rheumatologist for the first time. It seems like many of us on this

posting have been sent away in tears from the pediatrician's office

with the " it's just a virus " speil. It's funny how those parent

instincts kick in and send us all searching on the internet for our

own answers! I swear you are not losing your mind. We've all been

where you are!

We're still in the beginning stages but we finally feel like we have

the " ah ha " piece of the puzzle we have been searching for! We're

just waiting for our son to have another episode so we can have him

seen again to get an initial diagnosis. Then we're going to start

discussing treatments. Just an idea!

Micaela

, age 4 (most likely )

> Hello everyone! My name is e and my oldest child, Caitlynn,

> who is 4 1/2, gets fevers accompained by just one swollen lymph

node

> every 3-4 weeks. She has had these fevers for a few years, but I

> didn't realize they were so routine until this past June when I

> started writing the dates down on my calendar.

>

> In the past, I have taken her to a pediatrician when she spiked a

> fever. She never had any other complaints (stomachache, earache,

> sore throat, cough, runny nose, etc.)The doc could never find

> anything wrong with her and claimed that some kids just run high

> fevers (Caite will run 104.5 at almost every episode)and that it

was

> just viral. Well, after the first few run ins like this I started

> to feel like a hypochrodriac mom and quit taking her every time

she

> ran a fever. I would tell myself that I would wait until she

showed

> other sx, and then before I knew it, typically 4-5 days later,

she

> was fine.

>

> We have recently had a new D.O. start practicing in their office.

> Last month he had me get a CBC on her, which came up neg. No

signs

> of bacteria, wbc count was normal. She also had her first mouth

> sore last month. Then this month I had to take her again for more

> blood work along with a u/a c & s, which also came up negative.

This

> time her WBC was a little high, 14,500. He (the MD) is beside

> himself and is referring us to infectious control along with a

> rhumetologist. I live in Indianapolis, so I imagine she'll be

going

> to Riley, if any of you are familiar with them. I just learned

> about last week during her last episode by researching

> online. He's never heard of it and he thinks Caite should be seen

> by these specialists before he treats her with prenisone d/t side

> effects. My husband and I are beside ourselves. We just don't

want

> her to go through more tests if she doesn't have to. There's

> nothing like holding your daughter down to get a blood draw

> especially if you know it won't prove anything. I need advice on

> what to teel her docs, because there's so much I don't know about

> . My son will be 2 in Jan. and has had just 1 fever in his

> life. Please give me some direction.

>

> e Kendall

>

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

> Cheap Talk? Check out Messenger's low PC-to-Phone call

rates.

>

>

[Guest guest]

Micaela-

Caitlynn is having her first appt w/ID next Tuesday and rheumatology the

second week in January. I'm really pretty nervous about next week's appt. I

have no idea what to expect. What all did they do for when you took him

(tests, blood draws, etc.). I live in Indianapolis and her appt is with Riley

Children's hospital.

e

Re: i think my daughter has

e,

Have you seen a pediatric rheumatologist or and ID? We were amazed

how quickly all of our questions were answered when me met with the

rheumatologist for the first time. It seems like many of us on this

posting have been sent away in tears from the pediatrician' s office

with the " it's just a virus " speil. It's funny how those parent

instincts kick in and send us all searching on the internet for our

own answers! I swear you are not losing your mind. We've all been

where you are!

We're still in the beginning stages but we finally feel like we have

the " ah ha " piece of the puzzle we have been searching for! We're

just waiting for our son to have another episode so we can have him

seen again to get an initial diagnosis. Then we're going to start

discussing treatments. Just an idea!

Micaela

, age 4 (most likely )

> Hello everyone! My name is e and my oldest child, Caitlynn,

> who is 4 1/2, gets fevers accompained by just one swollen lymph

node

> every 3-4 weeks. She has had these fevers for a few years, but I

> didn't realize they were so routine until this past June when I

> started writing the dates down on my calendar.

>

> In the past, I have taken her to a pediatrician when she spiked a

> fever. She never had any other complaints (stomachache, earache,

> sore throat, cough, runny nose, etc.)The doc could never find

> anything wrong with her and claimed that some kids just run high

> fevers (Caite will run 104.5 at almost every episode)and that it

was

> just viral. Well, after the first few run ins like this I started

> to feel like a hypochrodriac mom and quit taking her every time

she

> ran a fever. I would tell myself that I would wait until she

showed

> other sx, and then before I knew it, typically 4-5 days later,

she

> was fine.

>

> We have recently had a new D.O. start practicing in their office.

> Last month he had me get a CBC on her, which came up neg. No

signs

> of bacteria, wbc count was normal. She also had her first mouth

> sore last month. Then this month I had to take her again for more

> blood work along with a u/a c & s, which also came up negative.

This

> time her WBC was a little high, 14,500. He (the MD) is beside

> himself and is referring us to infectious control along with a

> rhumetologist. I live in Indianapolis, so I imagine she'll be

going

> to Riley, if any of you are familiar with them. I just learned

> about last week during her last episode by researching

> online. He's never heard of it and he thinks Caite should be seen

> by these specialists before he treats her with prenisone d/t side

> effects. My husband and I are beside ourselves. We just don't

want

> her to go through more tests if she doesn't have to. There's

> nothing like holding your daughter down to get a blood draw

> especially if you know it won't prove anything. I need advice on

> what to teel her docs, because there's so much I don't know about

> . My son will be 2 in Jan. and has had just 1 fever in his

> life. Please give me some direction.

>

> e Kendall

>

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

> Cheap Talk? Check out Messenger's low PC-to-Phone call

rates.

>

>

[Guest guest]

Hi e,

I didn't know what to expect from our first visit either. We had to

wait for four months to get an appt. The visit was awesome! We had

a consultation and she read over all of my notes in my notebook. She

checked for Juvenille Arthritis (his ped thought he had JA) and

dismissed that. We were so reassured by our first visit. Basically,

all we did was talk and compare notes. She did want to compare his

blood from when he was healthy (the day we visited) and will see us

again in during his next episode. I feel so bad for him, I do offer

a small toy or book each time he needs to have his blood drawn. He

really doesn't like it ... so I do let him pick a treat! Otherwise,

it was a non-stressful appt.

If you have other children, you might want to find a sitter. I left

my toddler with a sitter so that my husband and I could focus more.

That helped us! If you have a chance before your appt. it would be

helpful to write down all of your daughter's symptoms and episodes

(that you can remember) so you can give a copy of this to your doctor

for her files. I also type a bunch of questions so that I don't

forget anything. The unknown is so stressful and it's hard to

remember everything! I am not even kidding you, within minutes of

meeting with our Rheumatologist all of my fears had been wiped away

because we had finally " hit upon something " ... I'm probably the only

person ever that skipped out of her office with a diagnosis

I am just the kind of person that likes to know what is going on and

then work on the next step (treatment) ... it made me relax a whole

lot more than the monthly visits to the peds with no other diagnosis

than " oh, he has another virus " . Good luck

Ps -- we were told that if Coop fevers (105+) and we cannot get him

to our rheumatologist then we should have the hospital test for

CBC,SED and CRP ... I wish I could tell you more about what those

tests are. We're still pretty new at this!

> > Hello everyone! My name is e and my oldest child, Caitlynn,

> > who is 4 1/2, gets fevers accompained by just one swollen lymph

> node

> > every 3-4 weeks. She has had these fevers for a few years, but I

> > didn't realize they were so routine until this past June when I

> > started writing the dates down on my calendar.

> >

> > In the past, I have taken her to a pediatrician when she spiked a

> > fever. She never had any other complaints (stomachache, earache,

> > sore throat, cough, runny nose, etc.)The doc could never find

> > anything wrong with her and claimed that some kids just run high

> > fevers (Caite will run 104.5 at almost every episode)and that it

> was

> > just viral. Well, after the first few run ins like this I started

> > to feel like a hypochrodriac mom and quit taking her every time

> she

> > ran a fever. I would tell myself that I would wait until she

> showed

> > other sx, and then before I knew it, typically 4-5 days later,

> she

> > was fine.

> >

> > We have recently had a new D.O. start practicing in their office.

> > Last month he had me get a CBC on her, which came up neg. No

> signs

> > of bacteria, wbc count was normal. She also had her first mouth

> > sore last month. Then this month I had to take her again for more

> > blood work along with a u/a c & s, which also came up negative.

> This

> > time her WBC was a little high, 14,500. He (the MD) is beside

> > himself and is referring us to infectious control along with a

> > rhumetologist. I live in Indianapolis, so I imagine she'll be

> going

> > to Riley, if any of you are familiar with them. I just learned

> > about last week during her last episode by researching

> > online. He's never heard of it and he thinks Caite should be seen

> > by these specialists before he treats her with prenisone d/t side

> > effects. My husband and I are beside ourselves. We just don't

> want

> > her to go through more tests if she doesn't have to. There's

> > nothing like holding your daughter down to get a blood draw

> > especially if you know it won't prove anything. I need advice on

> > what to teel her docs, because there's so much I don't know about

> > . My son will be 2 in Jan. and has had just 1 fever in his

> > life. Please give me some direction.

> >

> > e Kendall

> >

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

> > Cheap Talk? Check out Messenger's low PC-to-Phone call

> rates.

> >

> >