Stevens Johnson Syndrome

A few months ago baby Azulito had an infection arising from an eruption cyst. I learned that such an infection is rare among properly nourished infants and toddlers. 

Then baby A had a severe reaction to the Amox.icillin (a member of the penicillin family) he had been prescribed for the infection. The ER doctor at the Children’s Hospital said penicillin allergies are “relatively common” and gave baby A steroids and the name of an over the counter second generation (non drowsy) children’s antihistamine. 

We gave baby A the antihistamine daily for the recommended 7 days. It didn’t seem to do anything after the first 48 hours when it did seem to stop the rash from spreading or looking as rash like. But it did nothing to abate or improve the fiercely red, scale-like welted tissue on our baby’s feet, legs, arms and back. At one point I told the LP it looked like Baby A had suffered a chemical burn. It took almost a month to clear up. 

During that time I happened to have a previously scheduled appointment with my immunologist. I mentioned the ER visit. She was alarmed. She asked if she could refer Baby A to a paediatric immunologist. I leapt at the invitation. 

Despite the 1-2 year wait times for paediatric immunologists where we live (one of the shortcomings of our public health care system where queue jumping is prosecuted) baby A got an appointment within two months. 

At the appointment we learned about a new immune condition. Stevens Johnson Syndrome. I had heard of it but knew little about it except that children have died from it in litigated cases in the U.S. 

The doctor thinks what Baby A experienced was an early onset of Stevens Johnson and not the “relatively common” penicillin allergy we were attending to discuss and possibly run a drug challenge to confirm some years down the road. 

Stevens Johnson is a rare, serious immune-mediated hypersensitivity  complex. It primarily affects skin and membranes. It can also cause loss of sight and other tragic complications and in severe cases death. 

Stevens Johnson often results from drug reactions but can be triggered by other substances. In medical terms it is “a toxic form of epidermal necrolysis”. The chemical burn-like appearance we saw in baby A is one of its hallmarks. 

It is not safe to run a drug challenge with anyone diagnosed with or suspected of having Stevens Johnson. In Baby A’s case, his reaction was bad but enough but not as severe as many SJ cases. But most SJ cases occur in persons who have been exposed to the triggering substance before. 

Baby A had never been exposed to a penicillin type drug, not directly and not in utero. So his reaction is considered severe and any re-exposure very dangerous. 

Ugh. 

I had believed and hoped that this child would not have my allergies or asthma or other immune problems. I did not see this coming and have been humbled and terrified by the diagnosis. 

Baby A now has to wear a medic alert (there’s a fun thing to strap around the wrist of a small toddler!). And we have to make sure he never (ever) gets any of the penicillin family of drugs or those that the human immune system sometimes mistakes for that family. 

This has been a sobering development. 

All in all I consider us incredibly lucky. Unbelievably lucky. And for that I am deeply and truly grateful. 

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13 thoughts on “Stevens Johnson Syndrome

  1. No mother wants to see their child suffer but I can’t help but think it’s magical that Azulito is so much like you–I hope he gets all your finer attributes (intelligence, drive, etc.) as well! But prayers that this SJ syndrome proves to be very manageable for him. ❤ XOXO

  2. Good lord, I feel like you all just can’t catch a break! That sounds terrifying, but I’m so glad you were at least able to get the information to be able to proceed cautiously.

  3. Wow how stressful. I can only imagine how tough it is to find out that your child has an illness. I love your attitude though. I hope that baby A will remain as healthy as possible.

  4. Ah man! BUT GOD!!! I am so sorry about the diagnosis but so grateful for the covering God has provided for dangers seen and unseen. God is to be praised for his covenant protection over this life you fought and pleaded so hard to get here.

    The devil is a liar and your child is going to be just fine. He is such a little fighter and I am certain he will continue to be. I am so glad that you now know about this disorder so that you can take measures to keep him safe. When I think of what COULD have happened if you had not known… all I can say is Thank you Jesus !!

  5. Reading this took my breath away. This news is indescribable. I’m grateful it has been discovered at this young age – that is certainly a blessing. I know you will such a proactive mama bear to protect your little guy. Probably starting with LOTS of research on the subject, right? 🙂 I myself am headed to Dr. Google next to find out more about this. Sending you much love. Hug your little guys extra tight!

    • Thanks so much dear friend. It made my blood run cold when we got the information and I first researched it. It’s taken a while for me to write about it as I’ve digested it and moved past the shock and tears and anxiety. I will feel safer once he can talk and understand what this means so HE can advocate for himself. But for now we just pray he doesn’t need any more antibiotics for a long while. The MT has never had penicillin, only one of the class A can try out, so we will watch him as well if he ever needs AB. There is always something isn’t there.

    • So are we. So scary. I’ve read about some kids whose parents went through this and their lives were forever changed even when the children survived. It’s pretty random too – some kids have no family history or prior history with reaction or immune at all.

  6. Oh wow. I have never heard of Stevens Johnson before, it sounds very scary. But I am glad you did not have to wait long for an appointment and got an early diagnosis. It’s small blessings like timing that can make all the difference. I hope he stays in good health and you are all able to navigate this new diagnosis and its implications with strength.

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