Re: Do fevers have to be strictly cyclical for ?

[Guest guest]

We are in the middle of trying to see if it's too and my daughter is not

totally cyclic. Just sick very often with fever as the only symptom. I still

have so many questions and feel like I am running in circles with answers I get

from her MDs. I am SO sick of this which I know I am preaching to the choir.

Hang in there..we feel your pain for sure

All the best

[Guest guest]

We are in the middle of trying to see if it's too and my daughter is not

totally cyclic. Just sick very often with fever as the only symptom. I still

have so many questions and feel like I am running in circles with answers I get

from her MDs. I am SO sick of this which I know I am preaching to the choir.

Hang in there..we feel your pain for sure

All the best

[Guest guest]

My son is pretty consistently fevering, but it does range from 19-24 days

between episodes. However, he is going through a really rough spell and has

been sick with who knows what, but it included swollen tonsils and fevers 3

times this month. Its been horrible. We've gone through at least 2 other

periods where he's been fevering/sick back to back for a month or so. We have

never seen a break since he was about 9 months old. However, there are many

parents on here who have had relief for decent stretches like you are

describing. Hopefully they will chime in.

BTW, when my son has these cluster illnesses, the docs start to say immune

problems, but this has proved to be untrue. My pediatrician is convinced

without a doubt its , but my son's immunologist won't accept . I

think he's fairly ignorant to the condition and we are parting ways because I

agree with my pedi. The immunologist wants to run even more tests (the poor kid

has been poked, had echocardiograms, spinal taps, and the doc wanted to draw

bone marrow, but I put my food down!). I'm now heading for an ENT my pedi

recommended because she thinks the fevers will eventually wear my son down and

cause unknown damaging stress to his body. She says right now there is no

" proof " that there is long term damage, but common sense tells her that there is

no way a little body can be inflamed so often and it not have an effect and I'm

in complete agreement. I'm so ready for the T & A, in our case I think they are

the " root of all evil " .

[Guest guest]

My son is pretty consistently fevering, but it does range from 19-24 days

between episodes. However, he is going through a really rough spell and has

been sick with who knows what, but it included swollen tonsils and fevers 3

times this month. Its been horrible. We've gone through at least 2 other

periods where he's been fevering/sick back to back for a month or so. We have

never seen a break since he was about 9 months old. However, there are many

parents on here who have had relief for decent stretches like you are

describing. Hopefully they will chime in.

BTW, when my son has these cluster illnesses, the docs start to say immune

problems, but this has proved to be untrue. My pediatrician is convinced

without a doubt its , but my son's immunologist won't accept . I

think he's fairly ignorant to the condition and we are parting ways because I

agree with my pedi. The immunologist wants to run even more tests (the poor kid

has been poked, had echocardiograms, spinal taps, and the doc wanted to draw

bone marrow, but I put my food down!). I'm now heading for an ENT my pedi

recommended because she thinks the fevers will eventually wear my son down and

cause unknown damaging stress to his body. She says right now there is no

" proof " that there is long term damage, but common sense tells her that there is

no way a little body can be inflamed so often and it not have an effect and I'm

in complete agreement. I'm so ready for the T & A, in our case I think they are

the " root of all evil " .

[Guest guest]

We have been going threw this for 14 years and my son has never been on a

regular 21 day cycle. Some times it would be once a month, or four times a

month. He even had two month breaks. so thank the lord above that you get a

break.

Trust me it does wear there body out. every morning my son gets up like an

old man and can hardly walk.

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

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[Guest guest]

We have been going threw this for 14 years and my son has never been on a

regular 21 day cycle. Some times it would be once a month, or four times a

month. He even had two month breaks. so thank the lord above that you get a

break.

Trust me it does wear there body out. every morning my son gets up like an

old man and can hardly walk.

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

Planning your summer road trip?

Check out AOL Travel Guides.

(http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

My son's fevers have broken from his 24 day schedule several times to 18 days, 8

days etc. We have been told that the child can definitely pick up a normal

virus in between, which throws off their cycle.

- mother to 31 months fevering since 8 months.

Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

My son's fevers have broken from his 24 day schedule several times to 18 days, 8

days etc. We have been told that the child can definitely pick up a normal

virus in between, which throws off their cycle.

- mother to 31 months fevering since 8 months.

Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

Hi ,

We had the same exact question. My son who was previously very

predictable went from about 21-28 days fever free between episodes to

40 days. It just so happens that the past 2 episodes that had 40 fever

free days in between were after antibiotics. Personally I think my son

fits the description, but his Drs are now questioning it because

of the jump in days(and given that the jump occured after

antibiotics). I think the antibiotics were coincidental. He has the

high uncontrollable fever for 5 days(day 2 & 3 the worst), amazingly

high CRP and just recently tonsil involvement. Nothing else during

episodes.

Our ID now has us using Orapred during his next episode to truly

determine if it is/isn't . From what I've read here that is a

questionable method of diagnosis. Very frustrating and confusing. Also

afraid that by using the Orapred we'll bring the fevers closer

together as is common. We've truly treaured the 2 extra fever free

weeks we've gained and the thought of bringing them closer together

kills me!... especially given that I'm not comfortable with " Orapred "

as our method of diagnosis.

So, we're at the same point as you are I guess... just trying to see

how predictable episodes need to be. Wish there was some

definitive diagnosis.

Best,

Vivian

[Guest guest]

Hi ,

We had the same exact question. My son who was previously very

predictable went from about 21-28 days fever free between episodes to

40 days. It just so happens that the past 2 episodes that had 40 fever

free days in between were after antibiotics. Personally I think my son

fits the description, but his Drs are now questioning it because

of the jump in days(and given that the jump occured after

antibiotics). I think the antibiotics were coincidental. He has the

high uncontrollable fever for 5 days(day 2 & 3 the worst), amazingly

high CRP and just recently tonsil involvement. Nothing else during

episodes.

Our ID now has us using Orapred during his next episode to truly

determine if it is/isn't . From what I've read here that is a

questionable method of diagnosis. Very frustrating and confusing. Also

afraid that by using the Orapred we'll bring the fevers closer

together as is common. We've truly treaured the 2 extra fever free

weeks we've gained and the thought of bringing them closer together

kills me!... especially given that I'm not comfortable with " Orapred "

as our method of diagnosis.

So, we're at the same point as you are I guess... just trying to see

how predictable episodes need to be. Wish there was some

definitive diagnosis.

Best,

Vivian

[Guest guest]

Hi ,

We had the same exact question. My son who was previously very

predictable went from about 21-28 days fever free between episodes to

40 days. It just so happens that the past 2 episodes that had 40 fever

free days in between were after antibiotics. Personally I think my son

fits the description, but his Drs are now questioning it because

of the jump in days(and given that the jump occured after

antibiotics). I think the antibiotics were coincidental. He has the

high uncontrollable fever for 5 days(day 2 & 3 the worst), amazingly

high CRP and just recently tonsil involvement. Nothing else during

episodes.

Our ID now has us using Orapred during his next episode to truly

determine if it is/isn't . From what I've read here that is a

questionable method of diagnosis. Very frustrating and confusing. Also

afraid that by using the Orapred we'll bring the fevers closer

together as is common. We've truly treaured the 2 extra fever free

weeks we've gained and the thought of bringing them closer together

kills me!... especially given that I'm not comfortable with " Orapred "

as our method of diagnosis.

So, we're at the same point as you are I guess... just trying to see

how predictable episodes need to be. Wish there was some

definitive diagnosis.

Best,

Vivian

[Guest guest]

My daughters are not cyclical either and that is what has me baffled

with ID really feeling it's . Last time was three weeks ago since

fever broke BUT she always was diagnosed with a virus (nasal wash in

the hospital) so we know why she had fever that time! My husband said

maybe the virus was to just throw us off! Maybe so. Now this week with

fever I see nothing else and they are not super high. Wish things could

be black and white:-)

[Guest guest]

My daughters are not cyclical either and that is what has me baffled

with ID really feeling it's . Last time was three weeks ago since

fever broke BUT she always was diagnosed with a virus (nasal wash in

the hospital) so we know why she had fever that time! My husband said

maybe the virus was to just throw us off! Maybe so. Now this week with

fever I see nothing else and they are not super high. Wish things could

be black and white:-)

[Guest guest]

My daughters are not cyclical either and that is what has me baffled

with ID really feeling it's . Last time was three weeks ago since

fever broke BUT she always was diagnosed with a virus (nasal wash in

the hospital) so we know why she had fever that time! My husband said

maybe the virus was to just throw us off! Maybe so. Now this week with

fever I see nothing else and they are not super high. Wish things could

be black and white:-)

[Guest guest]

We have gone through stages where the cycles were completely predictable and

cyclical. Then breaks caused by other illnesses and random breaks (two of them

long, 12 and 16 weeks respectively!). The last year we have been using

Prednisone so then the cycles are much more random anyway. I truly believe it

CAN be even if the cycles vary. But that's just my non-medical opinion!

[Guest guest]

We have gone through stages where the cycles were completely predictable and

cyclical. Then breaks caused by other illnesses and random breaks (two of them

long, 12 and 16 weeks respectively!). The last year we have been using

Prednisone so then the cycles are much more random anyway. I truly believe it

CAN be even if the cycles vary. But that's just my non-medical opinion!

[Guest guest]

We have gone through stages where the cycles were completely predictable and

cyclical. Then breaks caused by other illnesses and random breaks (two of them

long, 12 and 16 weeks respectively!). The last year we have been using

Prednisone so then the cycles are much more random anyway. I truly believe it

CAN be even if the cycles vary. But that's just my non-medical opinion!

[Guest guest]

Not sure what to do today for my 4 1/2 year old. Last episode seemed to be last

August of 2007 ( a wonderful break for her), but last month she fevered and had

a cough while I was in the hospital so I could not be the judge of what really

was going on. My husband did give her the Pred. and she was much better

afterwards, back to her regular self. Still not sure if it was or just a

cold, always a guessing game.

Yesterday she began fevering not too high (101.7) for her but she also has light

congestion and a little cough. Took temp before and it was 102.2 gave Motrin

and she feels much better. Not really acting like and no symptoms of it,

like belly hurting and mouth/throat hurting and she is active. Has anyone else

had some congestion or slight cold symptoms with ?

Her cycles have been all over the place since we began giving the steroids 3

years ago. Pfapa is so confusing at times. I don't want to give her meds if

it's not necessary and I really don't like giving her lots of the fever reducers

on a regular basis. Thanks to all of you for making this board so wonderful

and allowing us all to sound off when we as parents are so frustrated.

[Guest guest]

Not sure what to do today for my 4 1/2 year old. Last episode seemed to be last

August of 2007 ( a wonderful break for her), but last month she fevered and had

a cough while I was in the hospital so I could not be the judge of what really

was going on. My husband did give her the Pred. and she was much better

afterwards, back to her regular self. Still not sure if it was or just a

cold, always a guessing game.

Yesterday she began fevering not too high (101.7) for her but she also has light

congestion and a little cough. Took temp before and it was 102.2 gave Motrin

and she feels much better. Not really acting like and no symptoms of it,

like belly hurting and mouth/throat hurting and she is active. Has anyone else

had some congestion or slight cold symptoms with ?

Her cycles have been all over the place since we began giving the steroids 3

years ago. Pfapa is so confusing at times. I don't want to give her meds if

it's not necessary and I really don't like giving her lots of the fever reducers

on a regular basis. Thanks to all of you for making this board so wonderful

and allowing us all to sound off when we as parents are so frustrated.

[Guest guest]

Not sure what to do today for my 4 1/2 year old. Last episode seemed to be last

August of 2007 ( a wonderful break for her), but last month she fevered and had

a cough while I was in the hospital so I could not be the judge of what really

was going on. My husband did give her the Pred. and she was much better

afterwards, back to her regular self. Still not sure if it was or just a

cold, always a guessing game.

Yesterday she began fevering not too high (101.7) for her but she also has light

congestion and a little cough. Took temp before and it was 102.2 gave Motrin

and she feels much better. Not really acting like and no symptoms of it,

like belly hurting and mouth/throat hurting and she is active. Has anyone else

had some congestion or slight cold symptoms with ?

Her cycles have been all over the place since we began giving the steroids 3

years ago. Pfapa is so confusing at times. I don't want to give her meds if

it's not necessary and I really don't like giving her lots of the fever reducers

on a regular basis. Thanks to all of you for making this board so wonderful

and allowing us all to sound off when we as parents are so frustrated.

[Guest guest]

Thanks everyone for your replies. I am of course open to further

testing to rule out other things. But in spite of the fact of

eliza's fevers seeming erratic, i really believer it is . It

may just be wishful thinking as I'm way more frightened of some of

the alternatives. But the rest of her symptoms sound like classic

to me. Time will tell I guess....

thanks for sharing your experiences here!!!

andrea (anna 3.5, eliza 17 months fevering since 10 months)

[Guest guest]

Looking back at my son's chart, can't say they have been totally

cyclical all the time. They are all over the board. We have also had

some breaks between 40 days & 110 days, but the fevers always come back.

Melody

[Guest guest]

Looking back at my son's chart, can't say they have been totally

cyclical all the time. They are all over the board. We have also had

some breaks between 40 days & 110 days, but the fevers always come back.

Melody

[Guest guest]

Looking back at my son's chart, can't say they have been totally

cyclical all the time. They are all over the board. We have also had

some breaks between 40 days & 110 days, but the fevers always come back.

Melody

[Guest guest]

> Has anyone else had some congestion or

> slight cold symptoms with ?

If I remember correctly, yes, we have observed such symptoms in

some... not all... of the episodes.

Chris