(PFAFA)

February 24, 2006

Hello,

My name is Daughtry and we live in Bushnell, FL. Our three year

old daughter started having fevers last October with the only other

symtoms being mouth sores and an irriated throat. We kept going to the

doctor and were told it was just a virus every time. We started keeping a

record of the frequency in December and discovered the fever would always

come back around the 19 of each month. I started looking online for any

information I could find about reoccurring fever and found this site. I

tried to share my discovery with one on the pediatricians in the group we

see and was scolded for looking on the internet for an answer. They don't

believe this is what has but the symptoms and stories I have seen here

mirror what is going through. She will start running fever from 100.0

to 104.8 and keeps it for 3-6 days. She is miserable during that time. She

dosen't sleep well and complains that she hurts all over. We try to make

her comfortable with Motrin and Tylenol every four hours. After she has had

some medicine she is okay for about and hour or two and then she starts

getting the chills again and her fever starts going back up. They have done

blood work to check her kidneys, glucose level, liver and several other

things and have not found anything. They finally said Wednesday that maybe

we should consider going to see the infectious disease people at Shands

Hospital in Gainesville. We are considering this but don't look forward to

what types of testing she may have to go through.

February 24, 2006

HI

I definitely recommend the trip to see the ID. Even

though I know you fear the tests...it is great to have

people who are willing to listen and might have some

answers. I know for myself, once Tori was dx and I

wasn't crazy anymore it really helped me plan my

months (of course around the fevers) and knowledge

makes it easier to deal with the everyday issues. But

that is just my opinion. Hope you are having a great

day

Liz Zukowski

Mom of Tori (3ys with ) and Emilie (5yrs)

--- Daughtry <michelle@...> wrote:

> Hello,

>

> My name is Daughtry and we live in

> Bushnell, FL. Our three year

> old daughter started having fevers last

> October with the only other

> symtoms being mouth sores and an irriated throat.

> We kept going to the

> doctor and were told it was just a virus every time.

> We started keeping a

> record of the frequency in December and discovered

> the fever would always

> come back around the 19 of each month. I started

> looking online for any

> information I could find about reoccurring fever and

> found this site. I

> tried to share my discovery with one on the

> pediatricians in the group we

> see and was scolded for looking on the internet for

> an answer. They don't

> believe this is what has but the symptoms and

> stories I have seen here

> mirror what is going through. She will start

> running fever from 100.0

> to 104.8 and keeps it for 3-6 days. She is

> miserable during that time. She

> dosen't sleep well and complains that she hurts all

> over. We try to make

> her comfortable with Motrin and Tylenol every four

> hours. After she has had

> some medicine she is okay for about and hour or two

> and then she starts

> getting the chills again and her fever starts going

> back up. They have done

> blood work to check her kidneys, glucose level,

> liver and several other

> things and have not found anything. They finally

> said Wednesday that maybe

> we should consider going to see the infectious

> disease people at Shands

> Hospital in Gainesville. We are considering this

> but don't look forward to

> what types of testing she may have to go through.

>

__________________________________________________

February 24, 2006

Oh ,

MAKE sure you see Dr. Skoda- at Shands.

She helped up diagnose ph when he was just an infant. At that Time Dr

Sleasman was there too... he was our primary doc but when we were ambulanced

up to Shands from Palm Beach... he was on vacation and she followed us as an

inpatient for almost 2 weeks!!

Shands is WONDERFUL and Skoda- is open to getting genetic studies and

she will probably be open to you joining the study at NIH... where current

research is going on.... browse our archives and read the files... etc...

God Bless

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

February 24, 2006

Hi ,

Sorry to hear about your kiddo! I agree with Liz, although with some

providers (like ours) it is harder to get referrals than others...if you can

get it, take it! Try to make sure it's a PEDS ID...for one thing, I have

noticed that their bedside manner with my kiddo is better than a " grown up "

doctor. The nurses were a lot more patient with his " getting ready " for his

bloodwork, too, which has helped immensely! I hate it when he has to get

his blood drawn and some jerk just sticks him while he is trying to

" prepare " . It only takes a moment to wait and then he goes through it

perfectly calm and proud of himself...

One word for blood work: EMLA cream! Put it on 20-30 minutes before you

know your kiddo's getting a draw and it takes most of the sting out of

it...I've even tried it before and it is much more pleasant. You have to

get a prescription, but it is so worth it for the younger kiddos. Just make

sure they give you the tegaderm patches (or something similar) that goes

over them...(like they use for I-V's I think)...I was able to find them

locally, but they are expensive (but still worth every precious

dollar!)...If they prescribe EMLA and the patches, your insurance is likely

to pick up the tab for the patches too...kind of like the glucose test

strips for a diabetic...

Take care and keep us updated!

Teri

Olympia, WA

Mom to Kiernan, 6, and Riley, 8

On 2/24/06, Liz & Ed Zukowski <zuke_av8r@...> wrote:

>

> HI

> I definitely recommend the trip to see the ID. Even

> though I know you fear the tests...it is great to have

> people who are willing to listen and might have some

> answers. I know for myself, once Tori was dx and I

> wasn't crazy anymore it really helped me plan my

> months (of course around the fevers) and knowledge

> makes it easier to deal with the everyday issues. But

> that is just my opinion. Hope you are having a great

> day

> Liz Zukowski

> Mom of Tori (3ys with ) and Emilie (5yrs)

>

> --- Daughtry <michelle@...> wrote:

>

> > Hello,

> >

> > My name is Daughtry and we live in

> > Bushnell, FL. Our three year

> > old daughter started having fevers last

> > October with the only other

> > symtoms being mouth sores and an irriated throat.

> > We kept going to the

> > doctor and were told it was just a virus every time.

> > We started keeping a

> > record of the frequency in December and discovered

> > the fever would always

> > come back around the 19 of each month. I started

> > looking online for any

> > information I could find about reoccurring fever and

> > found this site. I

> > tried to share my discovery with one on the

> > pediatricians in the group we

> > see and was scolded for looking on the internet for

> > an answer. They don't

> > believe this is what has but the symptoms and

> > stories I have seen here

> > mirror what is going through. She will start

> > running fever from 100.0

> > to 104.8 and keeps it for 3-6 days. She is

> > miserable during that time. She

> > dosen't sleep well and complains that she hurts all

> > over. We try to make

> > her comfortable with Motrin and Tylenol every four

> > hours. After she has had

> > some medicine she is okay for about and hour or two

> > and then she starts

> > getting the chills again and her fever starts going

> > back up. They have done

> > blood work to check her kidneys, glucose level,

> > liver and several other

> > things and have not found anything. They finally

> > said Wednesday that maybe

> > we should consider going to see the infectious

> > disease people at Shands

> > Hospital in Gainesville. We are considering this

> > but don't look forward to

> > what types of testing she may have to go through.

> >

>

> __________________________________________________

>

February 24, 2006

Hi (again),

I went into another coughing fit and forgot to include some other info for

you...

When a doctor hears that a patient (or parent) " looked on the internet " it

is received as though you were swearing at the doctor AND saying you know

more...I can't say I blame them in many ways...There are a lot of less than

" qualified " resources...by that I mean peer reviewed studies and articles as

being " qualified " .

In the files and links sections of this website, there are many great

articles. Another good source I have found is www.orpha.net , which is ALL

peer reviewed. They have something on just about every febrile disorder, as

well as all the disorders Drs should rule out in the process of diagnosing

your child and the tests required to get there. Speaking from experience,

bring copies of these items with you (and an extra copy for the doc),

complete with your notes of how your child may or may not fit the bill...ask

for the specific tests the studies/articles recommend (you may have more

luck getting some than others, depending on your provider and your insurance

guidelines)...

Especially ask for a CBC WITH Differentials and Platelets, ESR, CRP, and

labs to rule out stuff like Epstein Barr, Relapsing fever (louse and tick

borne) and the like...you will have to rule all those out anyway, as well as

strep, urinary tract infection, etc. Once the docs see that there is no

" localizing source " (or infection), they have to start looking at the

auto-inflammatory anomalies...

These are all sage words of wisdom from others on the group with far more

experience than I have...I do keep a spiral notebook for a " journal " and I

write everything in it both between and during episodes, including appts,

labs, phone conversations, etc. I also keep a copy (although I am missing a

few that I have to track down) of all labs, referrals, ER visits, etc, along

with all my " research " articles and studies in a sort of accordian binder

with pockets/notepad holder I have separated in to categories like " labs " ,

NIH study, Research, Notes, etc...Maybe not the best, but it works for me,

and it has pockets to keep our EMLA, patches, crayons, a few Tylenol and

Motrin and stuff like that in...

Good luck to you...from what I am learning, these are very hard sometimes to

diagnose short of genetic testing (and often UNTIL new markers are

found)...Lots of kiddos I have read about have been diagnosed with several

different disorders while waiting for genetics to catch up to their kiddos

chromosomes...Fran's son is one of them...

Take care of you and yours, hope this helps.

Teri

On 2/24/06, Teri <tscottmommy@...> wrote:

>

> Hi ,

>

> Sorry to hear about your kiddo! I agree with Liz, although with some

> providers (like ours) it is harder to get referrals than others...if you can

> get it, take it! Try to make sure it's a PEDS ID...for one thing, I have

> noticed that their bedside manner with my kiddo is better than a " grown up "

> doctor. The nurses were a lot more patient with his " getting ready " for his

> bloodwork, too, which has helped immensely! I hate it when he has to get

> his blood drawn and some jerk just sticks him while he is trying to

> " prepare " . It only takes a moment to wait and then he goes through it

> perfectly calm and proud of himself...

>

> One word for blood work: EMLA cream! Put it on 20-30 minutes before you

> know your kiddo's getting a draw and it takes most of the sting out of

> it...I've even tried it before and it is much more pleasant. You have to

> get a prescription, but it is so worth it for the younger kiddos. Just make

> sure they give you the tegaderm patches (or something similar) that goes

> over them...(like they use for I-V's I think)...I was able to find them

> locally, but they are expensive (but still worth every precious

> dollar!)...If they prescribe EMLA and the patches, your insurance is likely

> to pick up the tab for the patches too...kind of like the glucose test

> strips for a diabetic...

>

> Take care and keep us updated!

>

> Teri

> Olympia, WA

> Mom to Kiernan, 6, and Riley, 8

>

> On 2/24/06, Liz & Ed Zukowski < zuke_av8r@...> wrote:

> >

> > HI

> > I definitely recommend the trip to see the ID. Even

> > though I know you fear the tests...it is great to have

> > people who are willing to listen and might have some

> > answers. I know for myself, once Tori was dx and I

> > wasn't crazy anymore it really helped me plan my

> > months (of course around the fevers) and knowledge

> > makes it easier to deal with the everyday issues. But

> > that is just my opinion. Hope you are having a great

> > day

> > Liz Zukowski

> > Mom of Tori (3ys with ) and Emilie (5yrs)

> >

> > --- Daughtry <michelle@...> wrote:

> >

> > > Hello,

> > >

> > > My name is Daughtry and we live in

> > > Bushnell, FL. Our three year

> > > old daughter started having fevers last

> > > October with the only other

> > > symtoms being mouth sores and an irriated throat.

> > > We kept going to the

> > > doctor and were told it was just a virus every time.

> > > We started keeping a

> > > record of the frequency in December and discovered

> > > the fever would always

> > > come back around the 19 of each month. I started

> > > looking online for any

> > > information I could find about reoccurring fever and

> > > found this site. I

> > > tried to share my discovery with one on the

> > > pediatricians in the group we

> > > see and was scolded for looking on the internet for

> > > an answer. They don't

> > > believe this is what has but the symptoms and

> > > stories I have seen here

> > > mirror what is going through. She will start

> > > running fever from 100.0

> > > to 104.8 and keeps it for 3-6 days. She is

> > > miserable during that time. She

> > > dosen't sleep well and complains that she hurts all

> > > over. We try to make

> > > her comfortable with Motrin and Tylenol every four

> > > hours. After she has had

> > > some medicine she is okay for about and hour or two

> > > and then she starts

> > > getting the chills again and her fever starts going

> > > back up. They have done

> > > blood work to check her kidneys, glucose level,

> > > liver and several other

> > > things and have not found anything. They finally

> > > said Wednesday that maybe

> > > we should consider going to see the infectious

> > > disease people at Shands

> > > Hospital in Gainesville. We are considering this

> > > but don't look forward to

> > > what types of testing she may have to go through.

> > >

> >

> > __________________________________________________

> >

February 27, 2006

,

Wow your story sounds so much like Maddie's. The only difference is that I

have been blessed enough to have a pediatrician who admitted that he didn't know

what was wrong and was open to ANY suggestions that I might come across. So I

started researching, gave him results and he'd send us to the proper specialist.

As for the ID doc.....as painful as it might be at times for your DD to go

through testing, etc...I am not sure that I've seen a case of where a

child didn't have to go through a lot of testing before the doc's came to that

conclusion. Partly because a lot of doc's don't know about it, and partly

because from my understanding it is a diagnosis of exclusion because the

symptoms can mimic other diseases that are life threatening.

This is just my opinion....but if I had a pediatrician who responded in that

way when something is wrong with one of my children, I would find a new ped.

God bless!

Daughtry <michelle@...> wrote: