After 6 years in remission / Looks like it's back

[Guest guest]

My son, , now 11, was diagnosed with at aged 3. We had

his tonsils out at age 5, and he's been fever free basically since

that time. Now he's 11, and we've been monitoring him for a few

months now and it looks like the is returning. I haven't

quite figured out the date pattern yet... as to WHEN and what

schedule it is on again this time, but I've started keeping a

calendar again. He is in Florida now with his Dad, on vacation, and

he called me to let me know he has sores in his mouth, a sore

throat, and fever bout 102 (guestimated, as I am not there). So,

the fevers aren't as severe as they were when he was younger. But,

it looks like the periodic episodes are coming back again.

It used to be every 41 days like clock work. Not sure what the

pattern is this time. I'm still trying to figure it out. I

contacted his physician here in Birmingham, AL and he says I was

probably right and he would be interested in me collecting info

(calendar) again and bringing back in soon so that he can

look at our information again. See if he believes it is

again. As his mom, and knowing what I know about , I'm pretty

certain that is what it is again.

I've been reading posts on here, and looks like a few of you have

experienced some periods of fever 'free' to have it return. I'd be

interested in talking to you about your kids and hearing about this

stuff 'returning'. Let me hear from you. Is there anyone else on

here from ALABAMA?

starts middle school next month. We haven't had to deal with

teachers and the like about him missing school, since he's been in

remission. Ugh... looks like if it comes back with regularity,

we'll be discussing his schooling alternatives for days missed.

Thanks,

Dana Brown

Birmingham, AL

Mother of (11 almost 12 ), and (16 almost 17)

[Guest guest]

>

> My son, , now 11, was diagnosed with at aged 3. We

had

> his tonsils out at age 5, and he's been fever free basically since

> that time. Now he's 11, and we've been monitoring him for a few

> months now and it looks like the is returning. I haven't

> quite figured out the date pattern yet... as to WHEN and what

> schedule it is on again this time, but I've started keeping a

> calendar again. He is in Florida now with his Dad, on vacation,

and

> he called me to let me know he has sores in his mouth, a sore

> throat, and fever bout 102 (guestimated, as I am not there). So,

> the fevers aren't as severe as they were when he was younger.

But,

> it looks like the periodic episodes are coming back again.

>

> It used to be every 41 days like clock work. Not sure what the

> pattern is this time. I'm still trying to figure it out. I

> contacted his physician here in Birmingham, AL and he says I was

> probably right and he would be interested in me collecting info

> (calendar) again and bringing back in soon so that he can

> look at our information again. See if he believes it is

> again. As his mom, and knowing what I know about , I'm

pretty

> certain that is what it is again.

>

> I've been reading posts on here, and looks like a few of you have

> experienced some periods of fever 'free' to have it return. I'd

be

> interested in talking to you about your kids and hearing about

this

> stuff 'returning'. Let me hear from you. Is there anyone else on

> here from ALABAMA?

>

> starts middle school next month. We haven't had to deal

with

> teachers and the like about him missing school, since he's been in

> remission. Ugh... looks like if it comes back with regularity,

> we'll be discussing his schooling alternatives for days missed.

>

>

> Thanks,

> Dana Brown

> Birmingham, AL

> Mother of (11 almost 12 ), and (16 almost 17)

Hi Dana, I am new to this forum. I have a 10yo son who was just

recently diagnosed with . I feel sure he had the syndrome

years ago when he was 4,5 and 6yo. He was tested for everything you

can imagine but we never saw a specialist just our ped who was very

aggressive but I guess he did not know about . He has had a

long period of " remission " but now the fevers came back this summer,

late July. He has had three episodes since, all the same symptoms

sore throat with infected tonsils, swollen lymph nodes, and high

fever lasting 3-5 days. All cultures are negative. Slightly

elevated wbc and elevated sed rate. How is your son doing now? Did

the fevers continue? I sure hope not. I am not from Al but I am a

southern girl from Ar. Hope all is well. Sue Quillin

[Guest guest]

It seems like there is more and more of us with this coming back. My

son's ended when he was 5 1/2 and now he will be 11 and it's back. He

just had another epsiode last week. I gave him the predisone and now

I'm so afraid it will come back sooner. What if it starts to come

weekly? This last time was in three weeks. He can't be missing school.

He's also involved in karate and he was thinking about doing track in

the spring, if this keeps up he probably won't be able to do that. I

can't believe it's back and I wonder if it will be back for years.

Sue Webster

[Guest guest]

I'm just wondering if you all can attribute the remission to a tonsillectomy

or to any other factor. I'm still in the throes of this with a

three-year-old, but it's so scary to keep hearing that it can come back

after you think it is gone for good.

-

On 10/13/06, swdw102995 <SSDWeb@...> wrote:

>

> It seems like there is more and more of us with this coming back.

>

[Guest guest]

> >

> > It seems like there is more and more of us with this coming

back.

> >

>

>

>

[Guest guest]

My son didn't have a tonsillectomy the fevers just went away. I wish they

would go away again!

Sue Webster

[Guest guest]

Hi Sue,

My son had just turned 11 when he started fevering,

much older than the average child. His doc. told me

there seems to be a connection with starting puberty.

His symptons are milder than the other kids with

, I'm wondering if being older has something to

do with that. He also does not have a set pattern of

when he fevers. They are anywhere between 11 and 74

days apart.

So, even though our boys don't fit the average profile

of a child with , there are those of us out

there.

Hope that helped

Cheri, mom to 11 ()

Galt, CA

--- armama247 <4quills@...> wrote:

>

> >

> > My son, , now 11, was diagnosed with

> at aged 3. We

> had

> > his tonsils out at age 5, and he's been fever free

> basically since

> > that time. Now he's 11, and we've been monitoring

> him for a few

> > months now and it looks like the is

> returning. I haven't

> > quite figured out the date pattern yet... as to

> WHEN and what

> > schedule it is on again this time, but I've

> started keeping a

> > calendar again. He is in Florida now with his

> Dad, on vacation,

> and

> > he called me to let me know he has sores in his

> mouth, a sore

> > throat, and fever bout 102 (guestimated, as I am

> not there). So,

> > the fevers aren't as severe as they were when he

> was younger.

> But,

> > it looks like the periodic episodes are coming

> back again.

> >

> > It used to be every 41 days like clock work. Not

> sure what the

> > pattern is this time. I'm still trying to figure

> it out. I

> > contacted his physician here in Birmingham, AL and

> he says I was

> > probably right and he would be interested in me

> collecting info

> > (calendar) again and bringing back in soon

> so that he can

> > look at our information again. See if he believes

> it is

> > again. As his mom, and knowing what I know about

> , I'm

> pretty

> > certain that is what it is again.

> >

> > I've been reading posts on here, and looks like a

> few of you have

> > experienced some periods of fever 'free' to have

> it return. I'd

> be

> > interested in talking to you about your kids and

> hearing about

> this

> > stuff 'returning'. Let me hear from you. Is

> there anyone else on

> > here from ALABAMA?

> >

> > starts middle school next month. We

> haven't had to deal

> with

> > teachers and the like about him missing school,

> since he's been in

> > remission. Ugh... looks like if it comes back

> with regularity,

> > we'll be discussing his schooling alternatives for

> days missed.

> >

> >

> > Thanks,

> > Dana Brown

> > Birmingham, AL

> > Mother of (11 almost 12 ), and

> (16 almost 17)

> Hi Dana, I am new to this forum. I have a 10yo son

> who was just

> recently diagnosed with . I feel sure he had

> the syndrome

> years ago when he was 4,5 and 6yo. He was tested

> for everything you

> can imagine but we never saw a specialist just our

> ped who was very

> aggressive but I guess he did not know about .

> He has had a

> long period of " remission " but now the fevers came

> back this summer,

> late July. He has had three episodes since, all the

> same symptoms

> sore throat with infected tonsils, swollen lymph

> nodes, and high

> fever lasting 3-5 days. All cultures are negative.

> Slightly

> elevated wbc and elevated sed rate. How is your son

> doing now? Did

> the fevers continue? I sure hope not. I am not from

> Al but I am a

> southern girl from Ar. Hope all is well. Sue

> Quillin

>

>

>

>

>

__________________________________________________

[Guest guest]

Ask your doc if there is any conection to puberty and

starting fevers again. My son didn't have any symtons

until the age of 11. (pre-puberty age) his doc said

there IS a conection! I have noticed MANY people

saying their child was fever free until they turned 10

or 11. VERY INYERESTING !!!

Cheri, mom to 11 ()

GALT, CA

--- Klooster <andreaklooster@...> wrote:

> I'm just wondering if you all can attribute the

> remission to a tonsillectomy

> or to any other factor. I'm still in the throes of

> this with a

> three-year-old, but it's so scary to keep hearing

> that it can come back

> after you think it is gone for good.

>

> -

>

> On 10/13/06, swdw102995 <SSDWeb@...> wrote:

> >

> > It seems like there is more and more of us with

> this coming back.

> >

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hi,

My daughter Rebekah who is now 9 went in to remission too at the age

of 5, when she turned 8 she started fevering again. She has hit

puberty very early according to the Dr.s, so I am really starting to

think puberty has has something to do with it. She has not has a

tonsillectomy. When she turned 8 and started fevering again she was

regular for 8 months then stopped again for 9 months, last month she

started to fever again. I have also heard that stress or changes in

their life can bring on fevers, sometimes vaccinations too.

Paris(Mom to Rebekah 9 , and 5)

> >

> > My son, , now 11, was diagnosed with at aged 3. We

> had

> > his tonsils out at age 5, and he's been fever free basically since

> > that time. Now he's 11, and we've been monitoring him for a few

> > months now and it looks like the is returning. I haven't

> > quite figured out the date pattern yet... as to WHEN and what

> > schedule it is on again this time, but I've started keeping a

> > calendar again. He is in Florida now with his Dad, on vacation,

> and

> > he called me to let me know he has sores in his mouth, a sore

> > throat, and fever bout 102 (guestimated, as I am not there). So,

> > the fevers aren't as severe as they were when he was younger.

> But,

> > it looks like the periodic episodes are coming back again.

> >

> > It used to be every 41 days like clock work. Not sure what the

> > pattern is this time. I'm still trying to figure it out. I

> > contacted his physician here in Birmingham, AL and he says I was

> > probably right and he would be interested in me collecting info

> > (calendar) again and bringing back in soon so that he can

> > look at our information again. See if he believes it is

> > again. As his mom, and knowing what I know about , I'm

> pretty

> > certain that is what it is again.

> >

> > I've been reading posts on here, and looks like a few of you have

> > experienced some periods of fever 'free' to have it return. I'd

> be

> > interested in talking to you about your kids and hearing about

> this

> > stuff 'returning'. Let me hear from you. Is there anyone else on

> > here from ALABAMA?

> >

> > starts middle school next month. We haven't had to deal

> with

> > teachers and the like about him missing school, since he's been in

> > remission. Ugh... looks like if it comes back with regularity,

> > we'll be discussing his schooling alternatives for days missed.

> >

> >

> > Thanks,

> > Dana Brown

> > Birmingham, AL

> > Mother of (11 almost 12 ), and (16 almost 17)

> Hi Dana, I am new to this forum. I have a 10yo son who was just

> recently diagnosed with . I feel sure he had the syndrome

> years ago when he was 4,5 and 6yo. He was tested for everything you

> can imagine but we never saw a specialist just our ped who was very

> aggressive but I guess he did not know about . He has had a

> long period of " remission " but now the fevers came back this summer,

> late July. He has had three episodes since, all the same symptoms

> sore throat with infected tonsils, swollen lymph nodes, and high

> fever lasting 3-5 days. All cultures are negative. Slightly

> elevated wbc and elevated sed rate. How is your son doing now? Did

> the fevers continue? I sure hope not. I am not from Al but I am a

> southern girl from Ar. Hope all is well. Sue Quillin

>

[Guest guest]

My daughter is another whose looks like it's back after almost

3 years and she's almost 10 1/2. She had an episode almost exactly

1 year ago and then three two months apart - early May, July and

September. This one started Sunday - 6 weeks - and she's worse than

all the other recent ones. 102+ and glands so swollen she can't

move her head. We've got an appointment with an ENT to evaluate

tonsilectomy in early Nov (when she would have been cycling but with

this one now, who knows). Her tonsils don't seem to go back down to

a " normal " size between episodes anymore. She's completely

frustrated and getting blood drawn today was really bad - she almost

passed out after. Her sed rate and WBC are both high. We're going

to try the prednisone today and see if she has any relief.

I can totally understand how much this interferes with her life.

Fifth grade is getting harder and she's involved with dance, soccer

and has rehearsals for a musical at Christmas. Trying to sing and

speak lines with a sore throat is next to impossible and she's

really worried because she finally has a solo and lines, not just an

ensemble part. I had hoped the cycle would continue the 2-months

since it would mean she would be " safe " during the show dates but I

guess we can't tell now.

Thanks for listening,

Armstrong

Mom to (10 1/2 ) and Alec (almost 14 and sick of dealing

with sick sister!)

Mansfield, MA

>

> My son didn't have a tonsillectomy the fevers just went away. I

wish they

> would go away again!

>

> Sue Webster

>

>

>

[Guest guest]

You should try the predisone. It makes my son all better in a few

hours. Of course you hate to give them it, but at this age they need to

go to school. At least if it works your daughter will be able to keep

doing the things she's been doing. I always worry that the fevers will

come back sooner and then what do you do? I don't think giving them

predisone weekly is an option. My pediatrician said if the fevers keep

up we could look into something else.

Did your daughter have fevers for long when she was younger?

We live right next door in RI.

Sue Webster

[Guest guest]

I am so sorry to hear about ... It is awful when the fevers return with

... Ugh

I do not recall but did have genetic studies done?

Just wondering.

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/

[Guest guest]

We tried the prednisone tonight. It used to work immediately -

within 1/2 hour, but tonight didn't seem to take affect. We'll see

what the morning brings. She hit 103 late today and started out at

101.5 first thing in the morning. Cimetidine worked for about 2 1/2

years while she was on it (1 1/2 yrs) and then about a year after

she was off it. She went on it in the fall of second grade and it's

now 5th grade.

Fran, to answer your question, never had the genetic tests

done because just as we were figuring out what she had and tried the

cimetidine, we had such great results we thought it was gone. Now

maybe I need to look into that.

The problem with her tonsils now is that they are constantly

enlarged and pitted, even between episodes, and are interfering with

swallowing, etc. I've started taking pictures of them. She wants

to send them in to a world record book To top everything off, I

broke my ankle a week ago trying to play soccer with so as

we're off to the hospital to get her bloodwork done, I was hobbling

along on crutches! I'm sure we looked like quite a pair as she was

so pale and listless looking walking slowly next to me. (She is

learning to carry my purse for me - has to figure out when to lock

the car and put the keys away.)

Sue, where in RI are you? I'm from there originally. Do you see

drs. in RI or in Mass?

>

>

> You should try the predisone. It makes my son all better in a few

> hours. Of course you hate to give them it, but at this age they

need to

> go to school. At least if it works your daughter will be able to

keep

> doing the things she's been doing. I always worry that the fevers

will

> come back sooner and then what do you do? I don't think giving

them

> predisone weekly is an option. My pediatrician said if the fevers

keep

> up we could look into something else.

>

> Did your daughter have fevers for long when she was younger?

>

> We live right next door in RI.

>

> Sue Webster

>

[Guest guest]

,

Could the infection be actually related to her tonsils?? With and tonsils,

the tonsils will swell and get white spots on them, but they will return to

normal size... since there is no actual infection and it is due to an

inflammatory process...

If 's are remaining enlarged maybe there is an underlying dormant type

infection which exaceperates every now and then? How cyclical are the fevers??

Have you gone to an ENT to evaluate the tonsils during and inbetween an episode?

I am sure this will be difficult to do with a broken ankle!! You poor thing !!

Her tonsils sound like mine and I ended up dropping out of nursing school for a

year when I was just 17! I started school early since I graduated young and

ended up with the same age group.... LOL I had tonsilitis consistently every

month... and it wiped me out. I DID not have a PFS!! I can tell you from

personal experience it was awful... at 17 the pain for the first week was

intense... but I got through it with popsicles! I never tested positive for

strep as a teen.. it was viral. My tonsils were gross, big and pitted all of the

time... and worse when fevering with a full blown infection.

Do you think true tonsilitis may be causing this??

Just wondering??

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/

[Guest guest]

I don't have anything else to say except that I am sorry. I bet that

it is very frustrating for a fifth grader to be sick like this. Aidan

is only three and I see how it interfers with his life - and like I

said - he's only three!

Hang in there and hopefully all of this will go away one day . . .

Hannah

Aidan - 3

Sid - 5

[Guest guest]

Hi

We are from West Warwick. Our doctor is in East Greenwich.

Did the predisone end up working for your daughter?

Sue Webster

[Guest guest]

Hello Sue,

My daughter Madison was 3 last year when the prednisone stoped the cycles and

made the cycles come faster. THey were coming every 5-7 days. Her ID Dr at

Boston CHildrens Hospital did prescribe her to continue to take the prednisone

even thou it was every week. THat is what pushed me to go against the ID DRs

and her Pedi advice and find a ENT who would remove her tonsils.

Dr Liccamelli is also at Childrens and his daughter has and also

experienced the same increased cycles with prednisone.

Anyway he is doing research on kids and tonsillectomys. Madison was #15

in his study. He removed her tonsils last New Years eve and we have been fever

FREE since.

I was willing to take the risks of the surgury than the risks of prolonged

prednisone use on her body.

Good Luck to you

Cheryl

swdw102995 <SSDWeb@...> wrote:

You should try the predisone. It makes my son all better in a few

hours. Of course you hate to give them it, but at this age they need to

go to school. At least if it works your daughter will be able to keep

doing the things she's been doing. I always worry that the fevers will

come back sooner and then what do you do? I don't think giving them

predisone weekly is an option. My pediatrician said if the fevers keep

up we could look into something else.

Did your daughter have fevers for long when she was younger?

We live right next door in RI.

Sue Webster

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

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

Hi Fran and everyone,

Thanks for all the encouragement. The prednisone did end up working

for . The next morning she was 97.4 and bouncing all over the

place as if she'd never been sick - pretty normal for her after an

episode! That's a much lower " normal " temp for her than her

regular " normal " temp. She had another dose of prednisone the next

day and then 2 half doses. We'll wait and see if and when the next

episode occurs. The tonsils and fever definitely went down by the

next morning.

As for the regularity of her schedule, she had three fevers almost

exactly two months apart and then this last one was six weeks. Her

schedule in the past was not exactly regular to the day but was

about 3- 3 1/2 weeks apart.

I don't know if it's tonsillitis or not. Last week she had blood

tests done - elevated Sed rate and wbc - but I can't remember what

the nurse told me about the other tests. She has NEVER tested

positive for strep. Is there a test or some way to determine

tonsillitis? Will blood show viral based on what's elevated or

not? This time her lymph nodes were very swollen but the blood was

negative for mono.

We're scheduled to see an ENT in a couple of weeks. It would have

been during her next episode if she had kept to a two month

schedule, but since she went early, now I don't know. We'll see

what he has to say and then take it from there. I don't want to

rush anything but I don't want to wait a few more years if she keeps

going like this. The prednisone worked but I don't want to keep

giving it to her and especially not if it starts making the fevers

get closer together.

>

> ,

> Could the infection be actually related to her tonsils?? With

and tonsils, the tonsils will swell and get white spots on

them, but they will return to normal size... since there is no

actual infection and it is due to an inflammatory process...

>

> If 's are remaining enlarged maybe there is an underlying

dormant type infection which exaceperates every now and then? How

cyclical are the fevers??

>

> Have you gone to an ENT to evaluate the tonsils during and

inbetween an episode?

>

> I am sure this will be difficult to do with a broken ankle!! You

poor thing !!

>

> Her tonsils sound like mine and I ended up dropping out of nursing

school for a year when I was just 17! I started school early since I

graduated young and ended up with the same age group.... LOL I had

tonsilitis consistently every month... and it wiped me out. I DID

not have a PFS!! I can tell you from personal experience it was

awful... at 17 the pain for the first week was intense... but I got

through it with popsicles! I never tested positive for strep as a

teen.. it was viral. My tonsils were gross, big and pitted all of

the time... and worse when fevering with a full blown infection.

>

> Do you think true tonsilitis may be causing this??

> Just wondering??

>

> God Bless

> Fran

> Fran Bulone RN

> Mom to ph 7yr CIAS1 mutation 11/05

> Waxhaw NC

> /

>

>

>