late intro

[Guest guest]

Hi all,

sorry for never having taken the time to actually introduce myself. I

have signed up to the group a few months ago when I first heard about

and other periodic fever syndromes. My daughter is now 22 months

and started with monthly fevers when she was 11 months. The first

fever happened right after she got tubes in both ears after having had

multiple ear infections between the age of 6 and 10 months (I have

read people wondering about connections between antibiotics use, tubes

and then ...me too). About 6 months after her first

(unexplained) fever we moved from Philadelphia, PA to Durham, NC and

when she started to have her next fever spell (and at that point we

still thought it is another virus...), she suddenly was not able to

walk, was limping and crying, so you could see that she was in lots of

pain in one of her hips. When I brought her to a new pediatrician, I

explained her history of fevers and on that day it became obvious to

me that she did not just have a virus every month. Well fortunately,

the joint pain went away within 10 hours and never returned, however,

the new pedi did some research and found and we all were

convinced that this is it. Hannah also had some blood taken at that

time, twice within a few days, and always showed an elevated sed rate.

A month later, we went to see an ID doc at Duke Children's Hospital

who reviewed her history as much as I was able to reconstruct it and

diagnosed her (pretty confidently) with . We have not had any

more tests done or even seen a doc since then. Hannah had three or so

more episodes since then and once we used prednisone as the ID doc

prescribed to see if it worked. It did work (2 doses) to break the

fever but she was still very cranky, and just felt sick, but at least

no fever. She usually gets some mouthsores inside her cheeks (not too

bad, it does not keep her from eating, but you see it bothers her).

Since then we had one 6 week break and we had two episodes where we

thought she had but she never developed the actual fever. In

general, reading all these posts here (and again sorry for not

introducing us earlier), I feel that what we have on hand is some very

mild form of . We don't even miss much work or daycare, when it

comes, it takes 3 days and all is back to normal. We learned to deal

with it and I am hoping it actually fades away instead of becoming

worse. The prednisone we only used once and decided to have it on hand

but if we feel we can deal with it, we won't use it. Overall, our

daughter is very healthy, hardly ever is sick (even less that our son

was at that age, he is now almost seven) and develops perfectly fine.

Let me say though that this group is great, we have gotten lots of

good info and I wish everyone well. Most of my questions have been

answered by reading all of your posts. I will post more if we go

through any unexpected changes or if questions come up that have not

yet been dicussed.

Again, best of luck to everyone. I know how hard it is to get through

sleepless nights and to worry when you don't know what is going on.

Durham, NC

[Guest guest]

Hi ,

Welcome. We are in Raleigh. My two sons, (age 3) and

(age 2) both have periodic fevers. We've seen several doctors in

the ID department at DUKE also and now we go to a doctor in

Rheumatology there. We are also in the study at NIH. I'd love to

share with your our experiences and dicuss the doctors we've see at

Duke if you would like. Feel free to email me anytime.

Take care,

>

> Hi all,

>

> sorry for never having taken the time to actually introduce

myself. I

> have signed up to the group a few months ago when I first heard

about

> and other periodic fever syndromes. My daughter is now 22

months

> and started with monthly fevers when she was 11 months. The first

> fever happened right after she got tubes in both ears after having

had

> multiple ear infections between the age of 6 and 10 months (I have

> read people wondering about connections between antibiotics use,

tubes

> and then ...me too). About 6 months after her first

> (unexplained) fever we moved from Philadelphia, PA to Durham, NC

and

> when she started to have her next fever spell (and at that point we

> still thought it is another virus...), she suddenly was not able to

> walk, was limping and crying, so you could see that she was in

lots of

> pain in one of her hips. When I brought her to a new pediatrician,

I

> explained her history of fevers and on that day it became obvious

to

> me that she did not just have a virus every month. Well

fortunately,

> the joint pain went away within 10 hours and never returned,

however,

> the new pedi did some research and found and we all were

> convinced that this is it. Hannah also had some blood taken at that

> time, twice within a few days, and always showed an elevated sed

rate.

> A month later, we went to see an ID doc at Duke Children's Hospital

> who reviewed her history as much as I was able to reconstruct it

and

> diagnosed her (pretty confidently) with . We have not had any

> more tests done or even seen a doc since then. Hannah had three or

so

> more episodes since then and once we used prednisone as the ID doc

> prescribed to see if it worked. It did work (2 doses) to break the

> fever but she was still very cranky, and just felt sick, but at

least

> no fever. She usually gets some mouthsores inside her cheeks (not

too

> bad, it does not keep her from eating, but you see it bothers her).

> Since then we had one 6 week break and we had two episodes where we

> thought she had but she never developed the actual fever. In

> general, reading all these posts here (and again sorry for not

> introducing us earlier), I feel that what we have on hand is some

very

> mild form of . We don't even miss much work or daycare, when

it

> comes, it takes 3 days and all is back to normal. We learned to

deal

> with it and I am hoping it actually fades away instead of becoming

> worse. The prednisone we only used once and decided to have it on

hand

> but if we feel we can deal with it, we won't use it. Overall, our

> daughter is very healthy, hardly ever is sick (even less that our

son

> was at that age, he is now almost seven) and develops perfectly

fine.

> Let me say though that this group is great, we have gotten lots of

> good info and I wish everyone well. Most of my questions have been

> answered by reading all of your posts. I will post more if we go

> through any unexpected changes or if questions come up that have

not

> yet been dicussed.

>

> Again, best of luck to everyone. I know how hard it is to get

through

> sleepless nights and to worry when you don't know what is going on.

>

>

> Durham, NC

>