Friday, February 28, 2014

Topical Steroid Withdrawal can cause internal infections!

It's been a busy couple of months from when I posted last... mid January, Keegan started complaining of pain in his left heel and favored it greatly when walking. The same thing happened back in April (during the worst his skin had gotten), and we got xrays and blood work back then, which basically showed nothing except a slight elevation in inflammation markers and white blood cell count (which could have also been elevated due to his bad eczema). 

Over the course of a week, it went from slightly complaining about it, to not being able to function unless he had ibuprofen. He started waking up in the middle of the night screaming from the pain. We took him to his pediatrician, who referred us to the ER for immediate xrays and bloodwork. Bloodwork showed the same inflammation markers that were slightly elevated and elevated white blood cell count. Xray showed a dark spot that basically meant missing bone, where some sort of growth was taking over. 

From there, we were referred to an orthopedist at Children's Hospital. They ordered an MRI (which has to be sedated with children). I had to stress to the doctors NO STEROIDS. Apparently it is routine to administer steroids during most surgical procedures to help breathing.

MRI showed a fluid filled section of most of his heal bone, and that his whole heal bone was completely irritated. Doctor said most likely it's not anything scary (like cancer), it is either an infection or a bone cyst. So.... off to surgery to biopsy it and figure out course of treatment.

Surgery determined it was an infection - they flushed out the area and we had to stay 2 nights in the hospital while he got antibiotics through an IV, and they determined the bacteria was a strain of staph. After released from the hospital, he needs 6 weeks of oral antibiotics and weekly blood draws to make sure the inflammation markers are going down, and that the meds are messing with his organs in a bad way.

He was in a cast for 2 weeks and in a boot for 4 weeks after that... it will take at least 8 weeks for the heel bone to grow back in. We are at the 4 week mark post-op right now.

I am even more pissed at the doctors who over prescribed topical steroids to my son. They robbed him of a "normal" childhood for the past 3 years. There is no doubt in my mind that this bone infection was caused from topical steroid addiction / withdrawal. Staph is a common bacteria on the skin, and from all the scratching and making his skin open and raw from withdrawing, this caused the bacteria to enter his bloodstream and then get into the bone. I'm so over it.

Oh yeah, and since being on antibiotics, he has not has ONE boil!!! And the ones he did have cleared up. This is a far cry from getting at least 2 ones each day and have as many as 15 at any given time, spread over his entire body. We are kicking this infection in the arse! 

Keegan's 1 year journey is tomorrow - I will update then with new pictures of his new and improved skin. :)


  1. You are doing a great job, Mama! hang in there! Happy ONE YEAR too!! and YAY for no boils! <3 xoxo


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