Sweets syndrome lesions can vary in appearance
Ds doesnt look at all like the "books"
The key is you get lesions ( flat or hive like or tiny pimple like - Ds has had all three) and they don't move like hive they can be itchy or sore or both
They tend to come with
flu like symptoms ( headaches body aches sometimes fever nausea and abdominal pain /
fatigue ) the flu like symptoms last for about 48 hours for Ds
His rash appears with a few spots and they fade over a few days but more new spots are added daily. Total time a week or so of spots .
The only way to know if it's sweets is to biopsy since the appearance can vary so much even with in one person.
CT scans of the brain have way too much radiation please push for a Neuro consult and brain MRI .
If it is sweets realize she probably will need stronger meds than LDN
Sweets is very hard to control and needs immunosuppressants and/or biologics to keep it under control or daily pred
We upped Mtx to control Ds and that wasn't enough
Also upped humira dosing which were are still hoping will be enough
Colchine isn't recommended for Ibd kids but we tried it and failed with lots of D
The other drug dapsone we were told should never be given to kids especially Ibd kids .
Sweets syndrome can get ugly fast
But due to the higher level meds Ds is on for Ibd /JSpA his is milder and has not required hospitalization
30% reoccur until the trigger is under control
We don't know Ds trigger ( not crohns flaring as far as we can tell)
"Catching" the lesion for biopsy is tricky but really necessary
I would post pics but those won't help you since her may look different and still be sweets
Insist on the biopsy since there are other ugly things it could be that sweets differentiated from
Sweets in kids is rarely cancer - that tends to happen in adults so beware when your reading
Make sure your dermo had seen cases of sweets before
It's rare so most kiddo dermo haven't