Introduction

October 11, 2006

Hi all,

I am somwhat new to the group. My daughter, Sara, is 19 months old

and has yet to be diagnosed with or any other periodic fever

disorder. We are in the process of seeing a rhuematologist for a

diagnosis. Here is the thing...she got a fever today, 102.2 (that

came down with motrin) which is not bad for her at all. When she

fevers, she usually runs about 105-106. Also, she isn't

necessarily 'due' for a fever for another 5 days or so. How do I

know if this is a real episode or really just a virus (Oohhh I

cringe at those words, I have heard them for too long!) So the next

time Sara had a fever, she was supposed to have blood work done (to

check sick blood work from well blood work) and we were also

supposed to see the rheumatologist again. How do I know if this is

it? I know I am answering my own question but I guess I just have

to use my own judgement. I'm just so afraid that if this is just a

virus and the rheumatologist doesn't see anything she will drop the

issue and we will never find out why she has fevers so often. I'm

sure that is a pretty irrational feeling but I finally feel like

someone os listening to her symptoms and really trying to figure out

what is wrong, I'm so afraid to lose that. Any advise would be

greatly appreciated.

Thanks

Maureen

Mom to Sara 19 months (??)

October 11, 2006

When your child is fevering and especially when new to this and trying to

diagnose... it is important to arrange with your pediatrician a call system...

and arrange for your child to be seen to make sure you are NOT missing

something....

There has been cases where a child appears to be fevering with a Periodic Fever

event and it turns out to be any of these... pneumonia (walking especially),

endocarditis.... (infection heart) and menigitis... SO, if you are wondering

call the doc and get the child seen.

Also... if your pediatrician is in a large group with a " call " system on place

for emergencies... IF you have a good relationship with the primary

pediatrician... see if he/she will see your child each fever so you do not need

to deal with other docs who see high fevers and panic...

It does happen.

When ph was an infant and toddler our pediatrician ALWAYS saw him... he

instructed the front office to let him know immediately that ph was sick and

they ALWAYS squeezed him in that day. If he was out (actually off) I would

either wait or he would arrange with another doc (ALWAYS the same doc) to see

ph if we called. There were about 9 doctors in the group so this made life

easier.

I also felt comfortable taking him in as a baby... it made me feel a little more

secure.

The other thing... he gave me a " standing " script for CBC with differential...

and SED rate and Quantatative CRP... this helped when blood tests were needed...

and usually as a toddler and infant they were... I sometimes made the call and

then took ph straight to the lab for the blood work and then to the doctors

office.... He always wrote STAT on the script so by the time we got to his

office he had the results.

These are little things that will help you get through the rougher times.

Hope this helps.

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/

October 12, 2006

Hi Fran,

Thanks for the reply and the good advice. I have to try to get in

touch with Sara's dr. and see if I can work something out with him.

It's hard because she is a new patient and we don't know them very

well but this dr. is very patient and seems like he would be willing

to work with us.

So Sara did well last night. She woke up twice (once at 10pm and

then at 5am) but didn't seem to have a fever. This am she had a low

fever but was really cranky. So I gave her the motrin at 7am. She

was due again at 1 but felt fine to the touch when I put her down

for her nap. I checked her throat and she is starting to get small

blisters in the back. I also noticed this time and last that she

gets a ton of saliva and her lips get very pink/reddish when she

fevers. Is this a symptom of anything?

I still have the appt. with the rhuematilogist tomorrow at 1 but I

still don't know what to do. I feel like the episode is just

brewing in her and it will come full blast over the weekend when the

rheu. is not there and we are away not near our regular dr. or

hosp. What do you think would be best to do...go tomorrow with the

symptoms of slight fever and throat blisters or see what happens

over the weekend and if it gets worse go Monday? I feel like I

should wait since the #1 symptom should be high fever.

Thanks

Maureen, Mom to Sara 19 months

October 12, 2006

Hi Maureen.

I personally would wait until there is a full fever... In the mean time maybe

you can place a call to the doc and find out if they see patients on Saturdays

for emergencies. Some pediatric offices do see patients on weekends!! If not

then find out the usual protocol... who covers etc...

You know her usual fever event... and if she usually runs high ... it could be

something else. Does she normally start out slow?? Most kids with and many

of the other fever disorders will elevate pretty rapidly.... Unusual to start

out low grade... and take a couple days to elevate etc...

(This comment is for the younger kids... seems with the older the children

get the fevers are less severe in onset...)

Hope you get it all together. Hopefully the office your doc is in is open to

helping children in a unique way when the child has a unique disorder!! I bet

they just might!!

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/

October 12, 2006

Hi and welcome! I believe that is it is possible to have periods

of " remission " where they stop cycling as frequently. My son fevers

anywhere from 14 days apart to this last time - and boy was it NICE -

48 days a part. I suggest reading and researching and keep asking

questions because there are people on this board that are A LOT more

knowledgeable about it than I am.

Prayers for all!

Hannah

Aidan - 3 - fevering 17 months

Sid - 5

Fort Worth, TX

October 19, 2006

Hi Bobbie

I just wanted to write to let you know that my daughter sees Dr. Groh who is in

practice with your rheumatologist at Hershey. We live in Lancaster County PA. I

have been pleased with her treatment. My daughter was 2 in August. she is

currently taking Singulair and has done well on it. You know I posted yesterday

and I was saying how well she had been doing - no fever since end of July, then

this am she wakes up with a fever. I am thinking the same, that it may not be

realted because I am feeling a little ill myself but you just really never know

I don't think. I will wait the 3 days and then call her pediatrician if it

persists. I also wanted to mention that i know I have read of many children who

experience neck pain with the episodes (my daughter included) so maybe that was

what was up with the back of his head or maybe just a headache. He sounds liek

he is pretty verbal and able to tell you where it hurts well. That is good. My

daughter has never been good about it. She gets like your son does - very clingy

and wanting attention and held but never could tell me where it hurt. This am

she pointed to both her knee and elbow and said " ouch " . At least it is

something. Anyway.....welcome to the group and I wish you feverfree days (and

nights!) !

Lori Rodgers

mom to four daughters including (2) ?PFS

October 19, 2006

Hi Bobbie,

I am also from PA. I live about 25 miles north of burg;

however, we take our son Mason to CHOP in Philadelphia and now to the

NIH in Bethesda.

Make sure you get all the genetic testing done and that you feel

comfortable with how the doctors are handling your son's care as we

were first told our son had but recently via the NIH, they

believe he has HIDS, which is genetic ... though at this point they

have not found the mutation but the tests are still out ...

My son also gets terrible pain in the back of his head. But I always

attribute it to his migraine-like symptoms with his fever episode ...

as he also hates having the lights on. But if your son continues to

do this you should have him checked to make sure its not meningitis

or something of that nature. There were many times I took my son in

to be seen more for the pain, than the fever itself ... though he has

also had some very high fevers too.

I know that Tylenol and Motrin barely touch Mason's symptoms at

times. Though his Doctors tell me that his fever would probably go

even higher without the meds. so I continue with them anyways.

Its good to hear the Cimetidine seems to be working. That does help

some kids with . We had tried it and currently our son is still

taking it ... but it doesn't help him at all. We now have to start

the weaning process.

If you ever need an ear or want to email me privately, please feel

free to do so at heidikopp@....

My son Mason has had fevers since 11 months old and he is now 6 years

old. He also has lots of GI issues, several intestinal surgeries,

asthma, GERD symptoms, and is very small for his age. And yet he is

a very happy little man.

Heidi

Mommy of Mason, and Amber

Pennsylvania

>

> Hello....

>

> My name is Bobbie, mother of who is 20 months old. My son

was

> diagnosed with in August. It seems like was

diagnosed

> quite early compared to a lot of the posts. has been

fevering

> since the first week of May 2006. His fevers would come every two

> weeks like clockwork and would last four days. The day before the

> fever starts, just wants to be held all the time and gets

> very, very winey. You cannot put him down at all. He just

cries " up,

> up " . You cannot leave his side when is is fevering. When I would

get

> up go get something in the other room, he would start whining and

> running after me, grabbing my leg.

>

> has had many blood tests and ruled out many of the diseases

> and other conditions. He starts genetic testing next week.

>

> also has what they call geographic tongue. During his

fever

> episodes, the tongue gets really, really spotted and gets many 1/4 "

> white circles all over it. It doesn't seem to bother him though.

> When the fever stops, the tongues goes back to the normal pink

color.

>

> is being seen by Dr. April Bingham, a Pediatric

> Rheumatologist from Hershey Medical Center. We see her at the

Lehigh

> Valley / Muhlenburg Hospital. Does anyone else see her or is

anyone

> else from the Lehigh Valley/town, PA area?

>

> has been taking Cimetidine since the end of August and it

> stopped the fevers right away. He skipped three fever episodes and

> went 44 days without a fever, until this past weekend. I am

thinking

> this time, may have had a viral cold or something because

of

> all the different symptoms this time. He started on Friday with

> extreme stomach pains, he kept holding his belly and crying " boo

> boo " . By Saturday afternoon, the he no longer complained about

those

> pains, but the fever started then. Sun. a.m. he threw up right

after

> I gave him the Motrin. Monday night was a real scare for us.

> woke up and kept crying and screaming " boo boo " and holding his

back

> of his head with his two hands. Did anyone elses child complain

about

> pain in the BACK of the head? He did this for about 2 hours

straight

> and would not stop crying. Normally, all you would have to do is

hold

> him and he would stop crying. He finally fell back asleep and woke

up

> again after about an hour and a half and did the same thing again.

I

> felt so helpless and he was given Motrin before bed, so I thought

why

> wouldn't this have taken away any pains he would have had? By

morning

> he was fine and no more fever, but started with a runny nose. I am

> hoping this was just a viral thing that he had instead of the usual

> reoccuring fever.

>

> I have been reading all the posts and have learned so much. I look

> forward to reading every morning to see if there is something new

to

> look for.

>

> God Bless all of our children and make them well.

>

> Bobbie

> Northampton, PA

> Mother to (age 20 months )

> & (age 5-1/2)

>

October 19, 2006

In a message dated 10/19/2006 4:31:37 P.M. Pacific Standard Time,

kthursby@... writes:

My Name is Kim Thurmond, I am a the mother of Sammy(7yrs) and Lilly (4yrs).

Sammy is my son who has .

Oh, no. Not ANOTHER Sammy! :-) As you will see when you're on this list,

there seem to be a very high number of Sammys (and moms named Lori!).

I'm sorry you have a reason to be here, but glad you found the group. It

helps immensely to know that you're not alone.

--Lori, mom to Sammy (), 7, JRA/uveitis/?

October 19, 2006

I can relate with everything you feel. My daughter is 19 mths and has been

fevering every month for the past year. We finally found a Dr is knows alot

about Periodic fever syndromes, thankfully from a referral from someone from

this site. I don't know what I would have done because my Ped. didn't know

anything and the one Dr he did send me to at who is familiar with Pfapas put her

a strong antibiotic for a month and when that didn't work he suggested taking

her tonsils out.

I did try to prednisone, however, I have since stopped because he was increasing

the frequency of her episodes and I also am not comfortable with giving drugs to

my children.

As for the cimetidine. I have done alot or research and the only thing I can say

is if it does work, it is worth trying. There do not seem to be any benign

affects from this drug. I have only just started giving it to my daughter this

months so she hasn't been on it long enough to know if it is going to work. My

husband and I had the script for 2 months before we decided to try it. But she

gets her fevers so often, almost every 24 days for about 4 days. I am willing to

try it.

This is a very frustrating disorder and the only advice anyone can give is you

have to do what you feel is best for you and your child. If my child was older

and not fevering as often I might be inclined not to give the cimetidine and

just deal with the episodes but to have a child sick every 20 days is awful.

Wish you well and keep up with this site. I have learned so much from reading

the links and archive files I don't know what I would have done if I didn't find

this site.

Take Care

Tammielee

Mom to Alyssa 18mths (Pfapas ?)

3 1/2

Introduction

Hi

My Name is Kim Thurmond, I am a the mother of Sammy(7yrs) and Lilly (4yrs).

Sammy is my son who has . He hasn't gone through all the testing that alot

of other children have gone through, (I am not sure that I want to go through

all of that) but he seems to be the classic case of . When he was a baby

(after 1yr) he would get sick with high fevers 105-106 and we would take him to

the doctors and they could never find anythin g wrong with him other than the

fevers. So he would have a virus they would say. So that went on for a long

time. Back then it wasn't every 5 weeks, but at least every other month or so. I

thought for sure that he got sick more often then the other babies that I knew.

He would always be sick for exactly 3 days. So then I thought that maybe he had

such a strong immune that he just burned off all his viruses and that was why he

had no other symptoms. I stoped taking him to the doctors because it started to

be a waste of money and time.

The older he got the more questions and frustrations I had with the whole thing.

So last October I decided that I would write down on a calender when he would

get sick. He got sick every month for three days. I started taking him to

different doctors and some would listen to my story and concern that he got sick

more often then the normal children that we knew. Most just wanted to take out

his tonsils. I didn't think that made much sense, since he never complained of

sore throat, never had strep. etc.

So my husband and I decided to do our own research and found out about .

Everything came together after that. The symptoms that he had, and needed for a

diagnoses were present. Sammy always had canker sores (which I never put two and

two together or mentioned to a doctor) , always had the high fevers which we

controled with Motrin and Tylenol, always had the bad head aches, leg aches, and

completly life less for those days, and had the swollen gland, with no other

symptoms. Once the three days are up everything goes away. When he is sick his

canker sores get very big in his mouth, does anybody know of ways to help heal

them faster?

Since last October, only twice has he been sick with something other than his

episodes. Once the begining of Pnemonia, and this school year got strep for the

first time. Which he finally managed to pass to his sister and I. Nobody has

ever gotten sick from him until now. I always thought that was fishy as well. I

started bringing him to a doctor who knew I had had it with doctors and was

determined to help us and figure out what was wrong with Sammy. He has had blood

work done twice, and the only thing that shows up abnormal is when he is sick

his white blood cell count is a bit high.

I actually mentioned to the doctor of . He then started to look into it,

and thought that for sure that was what was wrong with Sammy. He had never heard

of . So that is where we are with all this. I chose not to do the steriods,

as I don't see how that can be good for our children to have every few weeks

just to make the episode go away. It doen't seem to make the problem go away

just mask it for the time being. We did get a prescription filled of the

Cimetimdine and are trying to decide wether to do it or not. I am not a fan of

giving drugs to my son everyday for who knows how long. Does it bother anybody

else, or if you are using it for your child does it seem to be safe and really

helpful?

We are not sure of the next steps but am glad that maybe there is some answers.

Other than Sammy getting fevers every 5 weeks for three days, he is a very

healthy and happy child , who is in second grade, loves to play sports, and is

very active.

Wish you all well this winter as it seems are kids are still able to pick up

other bugs in addition to their fevers.

Kim Thurmond

Fairview, NC

mother of Sammy and Lilly

____________ _________ _________ _________ _________ __

October 22, 2006

Kim,

My daughter kylie has been on cimetidine for about 5 and a half months. kylie

used to get fevers evry 14 days and lasted for three days with fever spiking

around 103.9. She barely had enough time to get well again and play for a

couple of days , then it would be back. She aske me one time, " daddy , why am I

always sick? " This came from a three year old. It broke my heart, I didn't

have an answer for her, and there was nothing I could do except dump tylenol

and motrin down her throat every three hours and pray that the fevers would go

away. We put her on the cimetidine hoping for any kind of results. If it is

truly the cimetidine working kylie has been pretty much fever free for about

four months. There was an episode, but very mild. I will gladly except thid

over every two weeks. Now her only question is why do I half to take medicine

all the time? hope this helps.

father to kylie