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[Guest guest]

My son is 11 years old and has been suffering with for a little over 6

years.  From reading many of the posts we were lucky to have been diagnosed

fairly quickly by an infectious disease doctor after about 6 months of

episodes.  The interval between episodes were only 13 days and I pleaded with my

doctor that this was not just " kids getting sick often " .  I have two other

children and when one child gets sick the other two usually follow suit, but

this was not the case.  I knew this was something different, so he sent me to a

doctor who did blood work every week for 6 weeks to confirm the diagnosis.  Marc

is classic textbook .  We could set our clock to his episodes for  several

years, however for awhile his episodes became sporadic and the intervals

increased between episodes.  Maybe once every three months, then about a year

and a half ago the episodes became more consistent again, every 42 days or so. 

When he was younger his fever

would run over 106, I would bring him to the dr. with golf ball sized glands,

and when the dr. would swab his throat to check for strep (since it presented

just like it) the swab would come out of his throat covered in blood because his

throat was so raw.  Now his fevers seem to run only up to 103/104 and everything

else is the same.  We use children's advil for the fever and pain, almost a

bottle an episode and of course I worry that I am going to give him an ulcer. He

gets a " pastey " look just before the onset of an episode, his glands in his neck

are small and hard, and then once the fever hits his glands swell to the size of

golf balls and  are tender, he is lethargic and can't even get his head off the

pillow.  We can deal with the , we made lifestyle changes (I left my

wonderful job as a reading specialist) to help care for him, he has learned that

he will miss some (okay, many) important events because he is sick, however I am

very

frustrated because he has begun to develop allergies.  He was tested when he

was first diagnosed for allergies and it was only a tree allergy.  Each year we

add more to the list.  Now he is allergic to weeds, grass, peanuts, tree nuts,

dust, dust mites, cats (we carry an epi-pen for the food allergies).  His recent

blood work showed that some of his antibodies to vaccines he received were

extremely low and now we are trying to figure out why.  This involves giving him

booster shots and then retesting his blood, however he was given a mandatory

meningitis vaccine for school and had a severe reaction, fever within  45

minutes of the shot and his arm swelled (alot) and turned red.  I checked his

glands and throat and they were fine, it was not his scheduled time.  The

fever was on and off for 3 days following the vaccine which the dr. said was how

reactions occur.  Of course by the fourth day his glands blew up, his throat

hurt and he was

running 103 fever.  !  I want to go to a doctor who has heard of this

syndrome, most dr.s just look at me like I am making up this diagnosis and

dismiss it because they have not heard of it.  I need to find out how much of

his allergies and reactions are invvolved with the .  The infectious

disease doctor won't see me because is not in her field.  I live in NJ and

I will travel to see someone who can help me and give me answers.  Any

suggestions from anyone out there will be greatly appreciated.  Thank you.

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