Introduction

[Guest guest]

We had T & A but Cade only had two minor mouth sores. He did have fever never

over 103.3 every 2 weeks. We have had great success. He had a T & A in Oct 06

and we are doing great. No more symptoms. Good luck and mention it to your

Doctor.

Leanne

Cade 5 yrs old

[Guest guest]

We had T & A but Cade only had two minor mouth sores. He did have fever never

over 103.3 every 2 weeks. We have had great success. He had a T & A in Oct 06

and we are doing great. No more symptoms. Good luck and mention it to your

Doctor.

Leanne

Cade 5 yrs old

[Guest guest]

hi my son is 14, and i am so glad to hear about the little bit of sugar

helps another child. that has always helped my son. when he was little and he

would get that wild out of control mood right before a temp spikes. a little

bit

of something sweet would calm him right down. strange most kids it would

hype them right up. still today it works. anyway you are not alone and no

matter what our kids age are we can always learn something from this wonderful

group. ( thanks fran ) . When I hear things that the new moms say it helps me

to

remember small things I have forgotten then I can write it down. i know you

wish your little one would out grow this but some kids just don't and i think

we don't hear about older kids because once a child gets to there teens two

things happen. first daily life of a teenager is hard to keep hold of. and

second they have to switch to a general dr. instead of a ped. dr. so were not

getting any child hood reports because there not kids anymore. our dr. only

goes

to 18 . anyway i will be glad to answer any questions you have. have a good

day char

**************

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[Guest guest]

hi my son is 14, and i am so glad to hear about the little bit of sugar

helps another child. that has always helped my son. when he was little and he

would get that wild out of control mood right before a temp spikes. a little

bit

of something sweet would calm him right down. strange most kids it would

hype them right up. still today it works. anyway you are not alone and no

matter what our kids age are we can always learn something from this wonderful

group. ( thanks fran ) . When I hear things that the new moms say it helps me

to

remember small things I have forgotten then I can write it down. i know you

wish your little one would out grow this but some kids just don't and i think

we don't hear about older kids because once a child gets to there teens two

things happen. first daily life of a teenager is hard to keep hold of. and

second they have to switch to a general dr. instead of a ped. dr. so were not

getting any child hood reports because there not kids anymore. our dr. only

goes

to 18 . anyway i will be glad to answer any questions you have. have a good

day char

**************

Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/\

2050827?NCID=aolcmp00300000002598)

[Guest guest]

Sherri,

This group is wonderful place for support and information.  Your situation

sounds very difficult, the fevers are bad enough but dealing with seizures too

seems unimaginable to me.  It seems the T & A does cure most children.  There are

so many success stories on this board.  I was not even considering doing the

surgery until becoming a member of this group and seeing the success for

myself.  We are scheduled to have it done in Sept.  Take care and this group

will make you feel not so " alone " .

Jackie (mom to Landon fevering since a baby will be 5 in Oct.)

Introduction

Hello...my name is Sherri and we live in Texas. My son, Brock is 4

years old and has been diagnosed with . He has had epilepsy

since the age of 1 and late last year began getting fevers. His

fevers started out lasting a few days and then he was fine. As they

increased their frequency and duration, he began having febrile

seizures with them. His other seizures are under control with

medication but the medicine cannot control the febrile seizures.

Anyhow, we started documenting the frequency and noticed the pattern

right away. His fevers come every 21 days and last for 3 to 4 days.

They can get pretty high and he usually has at least one seizure

during each spell. We have visited numerous doctors and had a

plethera of tests done to rule out other diagnosis. seems to be

the only thing the doctors can agree on. I was reluctant to accept

the diagnosis at first because I felt the doctors were " settling " for

something without getting a specific test result to indicate so.

After all the testing we have done and the research I have done, I

have come to the conclusion that this is the appropriate diagnosis..

We are struggling with the fevers and just really need some support

from others who go through this. He does not experience the sores in

his mouth, but his tonsils do swell. The doctor is going to remove

them in the near future. I think our biggest issue is that we worry

about the seizures that he experiences with the fevers.

Just looking for support of any kind in this situation!

Sherri~

[Guest guest]

Sherri,

This group is wonderful place for support and information.  Your situation

sounds very difficult, the fevers are bad enough but dealing with seizures too

seems unimaginable to me.  It seems the T & A does cure most children.  There are

so many success stories on this board.  I was not even considering doing the

surgery until becoming a member of this group and seeing the success for

myself.  We are scheduled to have it done in Sept.  Take care and this group

will make you feel not so " alone " .

Jackie (mom to Landon fevering since a baby will be 5 in Oct.)

Introduction

Hello...my name is Sherri and we live in Texas. My son, Brock is 4

years old and has been diagnosed with . He has had epilepsy

since the age of 1 and late last year began getting fevers. His

fevers started out lasting a few days and then he was fine. As they

increased their frequency and duration, he began having febrile

seizures with them. His other seizures are under control with

medication but the medicine cannot control the febrile seizures.

Anyhow, we started documenting the frequency and noticed the pattern

right away. His fevers come every 21 days and last for 3 to 4 days.

They can get pretty high and he usually has at least one seizure

during each spell. We have visited numerous doctors and had a

plethera of tests done to rule out other diagnosis. seems to be

the only thing the doctors can agree on. I was reluctant to accept

the diagnosis at first because I felt the doctors were " settling " for

something without getting a specific test result to indicate so.

After all the testing we have done and the research I have done, I

have come to the conclusion that this is the appropriate diagnosis..

We are struggling with the fevers and just really need some support

from others who go through this. He does not experience the sores in

his mouth, but his tonsils do swell. The doctor is going to remove

them in the near future. I think our biggest issue is that we worry

about the seizures that he experiences with the fevers.

Just looking for support of any kind in this situation!

Sherri~

[Guest guest]

We felt the same way that the doctor was settling but after reading and

researching I have felt more comfortable.  Good luck with your child!

[Guest guest]

Welcome Sherri. Must be terrible with seizures. We are very lucky that Emma

(3) never had one seizure in all her fevers. I always get told and read that

they are not dangerous but it must be scary to watch your child go through them.

Good that you've got a T & A planned. It's really worth a try in my opinion as it

has cured so many kids on this board (including ours although it's probably too

soon so celebrate it has 'only' been 5 months but for us it was worth it even if

the fevers start again today).

Take care

Inga

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[Guest guest]

Hi Holly,

My son Landon will be five in October and has been fevering since he was a

baby.  Landon has an episode every fourteen days (always has since a baby, we

will get 3 weeks apart occasionally but the norm is fourteen days). The

prednisone did increase the number of episodes.  We went from every two weeks to

every week, sometimes not making it a whole seven days without a fever.  For us

it took several times on the prednisone before we saw an increase in episodes,

but other families on here noticed the increase right away if I am remembering

correctly.  So to answer your question, yes prednisone will decrease the time

between episodes.  The upside is the children do not have to suffer for 3-4 days

at least for us that is the case.  Some folks on here suggest waiting until the

fever hits a certain point and then give the prednisone.  I have played around

and now wait until the fever gets over 101 and then give the prednisone.  This

seems to buy us a

little more fever free time.   I continue the steriod simply to avoid the 3-4

days of  really high fevers and being miserable.  I wish you the best of luck

and think that you will find a lot of comfort from this group.

Take Care,

Jackie

[Guest guest]

My son, aged 35 months was having his fevers every 16-19 days for a year but the

last few fevers have been 23 days apart. Regarding the Prednisone(which we are

not using at this point), from the research I have read, the fevers can come

closer together but for many, the fevers eventually spread out again.

Take care.

- mother to age 35 months, fevering since 8 months.

Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

Hi Hollie,

We lived in Raleigh when our two older sons were diagnosed with

periodic fever syndrome. We saw Dr. McKinney for a short time. we

have three boys with pfs - not . they all have had periods

where their fevers have come as close as 10 days apart. We only

tried Pred with and that is while we were seeing Dr.

McKinney. The fevers began to come very close together and the Dr.

was instructing us to give higher and higher amounts of pred on each

episode to the point where our regular ped stepped in and said it was

way too high for his weight.

Just an FYI - We switched to Dr. Rabinovich in Rheumatology and found

she was MUCH more familiar with ALL forms of PFS. She was also much

more familiar with Dr. Kastners work at NIH and the more current

research. Dr. McKinney was stuck on the diagnosis after our

children showed symptoms of HIDS. We had to literally fight and

argue with him to get genetic testing done and he laughed at us when

we told him we were going to contact Dr. Kastner to be a part of the

study at NIH. I'm sure there are probably others who have had a good

experience with Dr. McKinney but mine was so bad that I feel

obligated to share.

We've since moved to Rhode Island and now see a Rheumatologist at

Boston Childrens along with Dr. Kastner's group at NIH.

If you ever want to chat about area doctors please feel free to call

me. My number is 401.234.1163. I can also pull the name of the UNC

Dr we saw once when we were inpatient at Big Wake in Raleigh. He was

awesome but Duke was just closer to us to go to for appointments.

[Guest guest]

,

It is so comforting to hear that there are others out there that feel

they have to fight for their children to get the correct diagnosis.

I feel so frustrated and sometimes ask myself if I am crazy for

trying to get an accutate diagnosis (as much as possible) for my

son. I feel that the diagnosis is given and taken so lightly.

It is not easy to live with , but I really would like to make

sure it is not a genetic form that we could be treating differently.

, what symptoms of HIDS were you seeing that pushed you to

fight for the genetic testing. I'm just curious, as I'm not

convinced that my son has .

Thanks,

Pam

[Guest guest]

Hi and welcome to the group! This is a great place to find

information on . Like you said it is true that it is not a well

known condition I have found myself explaining it to health care

profesionals myself. As for your question about a compromised immune

system I know that certain medications like prednisone can

compromise thier immune system. It is something that I would

definately disscuss with my doctor. And your question about

becoming over heated, I have always noticed that my daughter is

exteremly warm blooded and sweats everytime she sleeps even if the

room that she is sleeping in is cool and she is very lightly

dressed, but my husband always just said that she is just warm

blooded. But now that you brought it up it makes me wonder if it has

something to do with it since almost every episode occurs while she

is sleeping at night or taking her nap. Somthing you may consider

for is a T & A it has really helped a lot of patients.

We ourselveles are scheduled to see an ENT on the 19th. They say

that the odds of it being cured are only 50% however from this

board and other studies the success rate for cure seems to be much

higher. Here is a link to a article about it that just came out a

little over a month ago. http://www.washingtonpost.com/wp-

dyn/content/article/2008/06/20/AR2008062002501_pf.html

We wish you and your family well.

Sincerely,

Francesca mommy to Ally 2years 2months fevering since 8 months and

Kylie 2 months.

[Guest guest]

My son's fevers started while he was still breastfeeding and continued

during the whole time I breastfed and thereafter.

[Guest guest]

Welcome to the group!

Concerning breast feeding, I think it has no bearing on . This condition

started with my son while I was exclusively nursing him as a baby. He was

constantly sick even though I stayed home, nursed him, and he was an only child.

I personally think this is an auto immune disorder.

Sent from my BlackBerry® smartphone with SprintSpeed

[Guest guest]

I'm not sure where you live, but I'd recommend finding a

specialist (either Pediatrician or ENT or Immunologist or

Rheumatologist). But find someone that knows about . The are

starting to be more prevalent.

If they feel your son possibly has , they will first rule out

several other diseases - depending on the doctor will depend on the

level of screening. They will likely have you try some drugs first -

Prednisone, or Cimetidine, or Singulair. Then they may recommend a T & A,

as studies are starting to show that they are proving effective for many

children.

Ginger - Atlanta, GA

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, 16 months old

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[Guest guest]

Hi -

I breastfed my daughter exclusively for 8 months, then continued to breastfeed

until she was 18 months old. She began fevering at 16 months. I did not notice

a correlation. She always nursed and ate well.

Lynn

[Guest guest]

jennifer

we were finally reffered to a specialist after we couldn't get her fever to

stop..they were every 2-3 weeks at first. we saw an infectious disease dr.

and it turns out that about 40% of her cases are just this diagnosis.

hope that helps as far as tests...they ran a bunch on my little one...and i

am still traumatized over having to bear hug her to hold her down so they could

take 10 tubes of blood, and she's screaming, and i'm sweating from holding

her so tight, and sobbing at the same time...they gave her a little baby doll as

a you did a good job gift, and she just started chewing on it's head.

she is currently on the cimetidine 4x/day and is having some benefits like

her fevers are now around 30 or so days apart instead of 24 and a couple of

times the fever has only gotten to 101.5 and she was able to play and act normal

through it, but she's only been on this medicine since august. the next thing

they want to do is blood work 2-3x/week for 6 weeks to rule out cyclic

neutropenia, and then possibly a bone aspiration if they don't see the

information

they need.

good luck in your progress and treatment of this condition, and i hope the

specialist can help you out!

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[Guest guest]

Jenn, most people go to an infectious disease specialist. I've been on

this board for a while now and that seems to be the case most times.

Any Doc that knows should know all the elimination tests( is

a diagnosis of exclusion). When they diagnosed my little girl they drew

alot of blood because they test for many differant disorders. I'm sure

your aware of cyclic nutropiena(spelling) , they want to rule that out

before giving the steroid because if they had the Nutro and they

lowered the immune with the steroid it wouldn't be good. The problem

with that test is they want to draw blood once a week for six weeks to

effectively study the results. Every parent knows how much fun blood

draws are, My wife pushed that off on me with a promise of lifetime

niceness(YEAH RIGHT). The Predisone given at the start of a fever stops

it in its tracks in about an hour. Most people report the fevers coming

closer together while on the pred but that wasn't the case for us. The

thought of a steroid given to a kid scared the heck out of us but the

specialist said such a small dose (.5ml) once a month is fine. She was

missing out on so much life before we got this under control (we were

too). I hope you get to the right doc and get your lives back. Remember

the squeaky wheel gets oil, don't let em dissmiss your insticts , some

doctors have pride issues(sick all the time bacause of the youngest of

four. PLEASE!) I wish I had a nickel for all the times I heard " its

just a virus it will run its course " . Good luck ... Steve, dad to Randi

almost 5..

[Guest guest]

I, too, and so sick of the doctors saying he's just getting sick a

lot - building up his immune system. That didn't sit well with me

either, so I started making a spread sheet of the fevers and going to

different doctors. I finally happened on another ped in our practice

that actually used the term . I couldn't believe it! I knew

about it from my recent research, but no other doctor - not the other

peds, not the ENT, not the Pediatric ENT or Infectious Disease every

mention the term to me. And here, this doctor throws it out like - of

course!! And she knew about all the treatments. She said she's had

5 patients over the years with it. I don't have an official

diagnosis, but I think it is very likely what Josh has. Keep us

posted on your situation. Josh is sick right now.. At least he

made it through our Disney trip last week before he got sick.

Christy

[Guest guest]

Sharon, my little girl quit for a long period and we too thought they

were gone, then the fevers came back quickly with a vengence. We were

so disgusted,(no offense but I thought I was done talking here). I just

keep reminding my wife to stay positive because at least we know now

whats going on. Its so great to have the prednisone that stops this in

an hour. We only give her .5 ml (teaspoon) and have never upped the

dose as shes grown and it always works. She suffered so many times for

five miserable days and now its an hour and shes running through the

house able to live life. I have had so many close encounters with

people not realizing how close they came to my wrath because of their

ignorance, as if you don't feel bad enough and then they make some

insensitive comment that in no way will help anything.I was always

taught to keep your mouth shut and let people think your ignorant then

to open it and let them know for sure. I've often wondered how long

this has been around. A nice lady I work with is determined that

her 30 year old son had this after she heard my story, she said she

kept ammoxicillian in the frige like milk. She said she used it so much

his first five years that it ruined his teeth. I see your in Fort

Worth, my Captain just retired down there to get out of our Michigan

winters. hopefully your weather has been nice, he deserves a break.

Good luck and take care.    Steve.

[Guest guest]

Sharon, my little girl quit for a long period and we too thought they

were gone, then the fevers came back quickly with a vengence. We were

so disgusted,(no offense but I thought I was done talking here). I just

keep reminding my wife to stay positive because at least we know now

whats going on. Its so great to have the prednisone that stops this in

an hour. We only give her .5 ml (teaspoon) and have never upped the

dose as shes grown and it always works. She suffered so many times for

five miserable days and now its an hour and shes running through the

house able to live life. I have had so many close encounters with

people not realizing how close they came to my wrath because of their

ignorance, as if you don't feel bad enough and then they make some

insensitive comment that in no way will help anything.I was always

taught to keep your mouth shut and let people think your ignorant then

to open it and let them know for sure. I've often wondered how long

this has been around. A nice lady I work with is determined that

her 30 year old son had this after she heard my story, she said she

kept ammoxicillian in the frige like milk. She said she used it so much

his first five years that it ruined his teeth. I see your in Fort

Worth, my Captain just retired down there to get out of our Michigan

winters. hopefully your weather has been nice, he deserves a break.

Good luck and take care.    Steve.

[Guest guest]

Hi Steve!

How old is your little girl? My son is 8, weighs 50 pounds and is

taking the Orapred at 12ml. The doctor tried to up it in July and I

asked her why we should up his amount if it is working just fine as

it is. She kinda gave me a look, but then said she would leave it

alone at my request. I think he is taking too much already, but I am

not the doctor and don't know very much about the dosage. Just

wondering how much your little girl weighs and her dosage.

I hope your Captain enjoys it in Fort Worth. I really like the

area. I moved here in 2006 from a suburb in New Orleans after

Hurricane Katrina. I really loved New Orleans, but the area got too

bad after the hurricane and it was hard to rebuild your house with

and infant and a 5 year old. The winters in Fort Worth are

definately not as bad as in Michigan! We only get ice or snow maybe

twice a year. The summers are really hot, but much different than

the humid summers in Louisiana. I would much rather have a 105

degree day with low humidity than 90 degrees in Louisiana with 100%

humidity. It is MUCH hotter at 90 degrees in Louisiana than it is in

Fort Worth. Anyway, I hope he enjoys it!

[Guest guest]

My little girl is about 41 lbs and just about five. The dose she takes

has always worked even as she grew so why change. I have heard others

stating larger amounts and often wondered if they had ever halfed the

amount to see if it worked.Our doc. said it doesnt take much to stop a

fever so we stick with the .5ml(teaspoon)  I suppose people react

differant to medicine so you have to find what works for them. Katrina

was horrible, my nephew was stationed at the Naval base south of New

Orleans when it hit (he got out the day before and made it to Texas). I

guess winter isn't that bad when you compare it to the possibility of

natural disaster. The closest we came was in 1995 we recorded like 58

inches of snow in one weekend (national record). I shoveled my roof for

three days so it wouldn't collapse, Their was so much snow that a

normal plow couldn't push it, you had to snowblow or shovel.Ten miles

out of town got nothing, it all came off Lake Superior where I live.

Have

yous ever thought about the tonsillectomy? Were not going that route

but alot of people do with good results.. Good luck .Steve.

[Guest guest]

Hi Orit,

We went through a similar drill with our six year old boy, Tom.

I have one tip for you " visit Dr. Padeh (http://padeh.net/) " , he

leads the research in Israel, very knowledgeable, and trustworthy.

Good luck,

Erez