Re: I have a teenage boy with EN, too....

[Guest guest]

Hi Michele,

My son is 16 and has had what we believe is EN since October of 2011. His case started with a small, flat circular mark (that looked like a bite) on his right wrist, followed by two swellings on the left arm, one on the forearm, one on the back of the elbow. By the following weekend, both feet and one hand developed the painful, subcutaneous lumps that seem to be the hallmark of this condition. These later were accompanied by bumps up and down the forearms as well as the shins. He had some low-grade fever, malaise and a mouthful of canker sores.

Since then, we have ruled out many, many causes. He's had bloodwork 6 times, which put my mind somewhat to rest concerning cancers--even rarer as a cause for EN. He's had 3 biopsies which were inconclusive. He's had a colonoscopy (no troubles there) as well as a checkup by an ophthalmologist, looking for eye ulcerations. Bloodwork has ruled out strep, mono, Cat Scratch disease, Lyme disease, Celiac and almost everything else you can think of. A chest x-ray and TB test have also been done. He's seen a pediatric infectious disease specialist, a pediatric GI specialist, an ophthalmologist, a pediatric rheumatologist and, not one, but two (!) dermatologists in addition to our pediatrician. He was not on any medication at the time of the outbreak so we cannot blame a drug reaction. He is HLA-B27 positive which, as I understand it, means that he is prone to a bunch of different auto immune conditions.

At this writing, we are still awaiting the analysis of his most recent biopsy. The other biopsies were evaluated by 3 different labs, including a lab at Northwestern University. I think we can safely say that this may turn out to be idiopathic. The rheumatologist is trying a low dose of prednisone to manage the bumps. This helps a little, but steroid use is an issue in and of itself. The dermatologist is also trying a 3-week round of amoxicillin, just in case it is latent strep (the most common cause) that did not show up in any of his strep tests. It is too soon to be sure if this is helping but, what the heck, we've tried everything else. Like me, I am sure you have researched EN trying to uncover what the cause might be. I don't know how long your son has struggled with this but, hopefully, like mine, he will see improvement that will just come naturally. The best thing we have done for my son is to put him on an excellent whole-food based vitamin regime and then stick to it. (We use Alive! vitamins with iron.) I have a friend who gave my some homeopathic tea to try and that seemed to help a little, too.

Hang in there and try not to dwell on the worst potential causes--they are the most unlikely. And please tell him, he is not alone...

Isabel in Ohio

Son having second flare

Hi my son is 18 & he is enduring his second round of EN. His initial bloodwork failed to identify the cause. Our Pcp & dermatologist said it was probably idiopathic. My question is this.....I know it is rare for males to get this & even more rare for teenagers so should I be pushing for more testing. In the back of my mind I keep thinking of the small % that it could related to cancer & it can precede the cancer by months. I hope someone can give me some insight.Thanks!Michele