new member reporting in

[Guest guest]

my son is now 6 1/2 years old. he was diagnosed with when he was

4. the diagnosis came about by accident. the third fever that summer

(they come about every 14 to 16) days sent us back to our pediatric

group to see what the problem might be. this doctor asked if he had

experienced any mouth ulcers. i thought that odd but yes, i had hit

the most recent one when i was brushing his teeth. she contacted an

infectious disease specialist in our area who put him on cimetidine.

the fevers continued. over the course of the next nine months to a

year, the fevers did become less severe and did not last as long. but

they did continue. his blood work (he is now an old pro at this)

always came back " as expected with . " late last summer i added a

single dose of benadryl a day to the cimetidine at bed time. the

doctor treating him said that there shouldn't be any harm in trying

it. some where along in october 05 (according to my fever diary) the

fevers just went away. i discontinued all medication around christmas

of last year. no fevers...until one week before easter this

year...and again last week. it was so disheartening. he can keep

nothing down...not even tylenol or motrin to lower the temperature.

he has been able to tolerate tylenol suppositories. we keep gel ice

packs in the freezer and he just wants to lay on them. at the end of

the last fever, i did a google search and found this group.

i suppose the one thing that i find a bit puzzling is the apparent

lack of knowledge concerning amoung physicians; especially

pediatricians. it was a bit disconcerting to have the last doctor (a

pediatrician in the group we go to) look at me with an expression of

bewilderment on his face as if i had made up some malady.

that's our story so far. i'm grateful this group is here.

ryder martin