1 month dx and thought we're better

[jenstaci]

:sign0085:OK my 9 year old son Micah was diagnosed with Crohn's a month ago, he is on pred, Imuran, Asacol, Iron, Zantac,& Concerta (ADHD). His levels have come way down, RBC are up to 10 from 8, Inflamational Markers down to 18 from 80. Just when we thought everything was going well, he woke up with big red welts on both of his legs that are very painful, he is limping! I took him to the pediatrician and he didnt know what is was, so I text a picture of them to the GI doctor and she wrote me back they are Erythema Nodsum- sorta like a flare up from Crohn's! Really?? We havent even cleared up the initial flare ups in his esphagus, stomach, large and small intestines!! How much is this poor guy going to have to handle!! Anyone else dealt with this so quickly after the diagnosis??

 

[David]

I'm sorry you're son is still struggling

A few thoughts:

1. If he has esophageal and stomach involvement, you may want to discuss the idea of getting him on a PPI with the doctor rather than just Zantac. PPIs perform better than H2 blockers.

2. It can take a few months for the Imuran to kick in so hopefully that starts soon which should help a lot.

3. On rare occasion, Mesalamine (the active ingredient in Asacol) can actually lead to erythema nodosum. You may want to discuss that with your doctor. That he's on pred and getting the EN makes me wonder about that.

 

[Sascot]

Sorry to hear about your son. I have to agree with David - when I was reading your thread, the first thing that popped into my head was an allergic reaction to something. If your son's blood tests are coming back better than they were, it seems strange to suddenly get a totally new symptom. Just a thought. Hope it goes away soon!

 

[kimmidwife]

Sorry to hear about your son. I agree with the others look into a possible allergic reaction.mydaughter had a severe allergic reaction to imuran called Stevens Johnson syndrome where your skin blisters. Does he have just welts or blisters? If they are blisters get him seen right away as if it is a Stevens Johnson reaction it can become serious if he keeps taking the medication.

 

[jmckinley]

So sorry about the bump in the road. Its frustrating to say the least when we think things are under control and BAM! Something else pops up! I have never had an experience with erythema nodsum, but experienced with getting surprises! I hope things get under control soon!

 

[DustyKat]

How are things going jenstaci? Have things settled at all?

My son has never had the skin manifestations of Crohn's but he did suffer setback after setback three weeks after being diagnosed with mild to very mild Crohn's. I surely know that feeling of disbelief and despair when the tables turn so soon after diagnosis.

I hope things are improving your boy. :hug:

Dusty. xxx