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Diane-

My daughter never got the mouth sores or very swollen glands, only the

fevers.  She would complain about a headache and stomach pains the

day before.  She is now 6 and we are down to two fever espoides

this year.  It is our hope thet she is cycling out of them! 

It is very stressful and we found the use of predoinse to be a godsend!

Amy

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Diane-

My daughter never got the mouth sores or very swollen glands, only the

fevers.  She would complain about a headache and stomach pains the

day before.  She is now 6 and we are down to two fever espoides

this year.  It is our hope thet she is cycling out of them! 

It is very stressful and we found the use of predoinse to be a godsend!

Amy

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Hello,

My son started out with fevers only too for the first year or so. He then moved

to tonsil involvement and had a few episodes of swollen lymph nodes. Your child

can only have fevers and still have . The fevers seem to be the hallmark,

with every other symptom optional. I have read very often on this board that

the other symptoms normally show up, but sometimes over time.

Mom2 born 5/11/06

T & A 5/22/08

Last fever 5/17/08

7 weeks and 2 days fever free!!!

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Hi ,

Sorry to hear that you have so much stress on you right now. I know

that dealing with my son's fevers and being pregnant alone was very

stressful on me, so I'm sorry to hear that you're also dealing with

even more issues. The good news is it sounds like you have a great Dr

who is taking you seriously. We went through many " virus " visits

before I finally insisted we get another opinion.

In terms of the mouth sores, we don't think my son developed them

until about 6 months into the condition. It's tough to tell though

because he's just now able to really communicate when his mouth hurts.

He also doesn't get them with every episode - since we first noticed

him getting them he's only had them 2 out of 5 or 6 episodes. Our ID

classified him as " atypical " because he didn't 100% fit the profile

initially(no mouth sores), but he seems to be growing into it!

Also, is not genetic. You should meet with a specialist(some do

an infectious disease, some a rheumatologist, some an immunologist) as

they can help screen for many periodic fever conditions.

I'm sure you'll find this board very helpful. Hope things begin

looking up for you.

Vivian

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I just realized that I forgot to say that I live in Eastern Washington

and am a SAHM that works partime at night. My husband is a full time

Firefighter/EMT. And I used to be until babies came into the picture.

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My little girl has never had the mouth soars only the fevers with all the other

symptoms (leg/stomach pain, swollan lymph nodes, headache, no

appetite,paleness,shivvers,extreme thirst,difficulty swallowing, vomitting.)

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Thank you everyone for your input. We are trying Cameron on his first

dose of predoinse soon. Our doc is truly amazing shes also my ob.. I

have noticed that alot of you have been given the run around before

comeing to a term that fits. Also Cameron is very sensitive to

sunlight. Like if were in a car and the light shines on him he

freaks. I noticed on the template for 504 school thinngy it says needs

sunglasses outside. Is sun sensitivety another reaction to ?

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Hi Diane

Emma also just had the fevers and as time went by she started getting joint pain

and sometimes swollen glands and tummy aches but never a mouth sore etc.

In one of the most recent studies (have a look in the reference section) they

did a T & A study on about 27 kids and a lot of those only had the fevers nothing

else. T & A worked in all but one cases I think.

We had a T & A on 19th March and so far it has worked for us as well. Not only in

eliminating the fevers but also in Emma's general health and energy levels. She

now has rosy cheeks almost every day and was always pale beforehand.

Hope this helps

Take care

Inga

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Diane -

My son Zachary (4) was diagnosed with last fall.

Although he fits the description well, his symptoms

only occur during the summer months. I don't know why,

but its been suggested that its related to the sun, heat,

(or maybe the lake water he swims in;-)

Last summer he had bouts of constipation just before

a episode, although he has a general tendency towards

constipation anyways. He is now on mirolax to control that.

Also he is *very* photosensitive. The sensitivity always got worse

just before an episode. He wears sunglasses and a hat

outside whether the sun is shining or not, and it seems

to help alot.

Holly

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