Stevens-Johnson Syndrome info needed please

Hey everyone.......my 8 year old grandson has been diagnosed with the Stevens-Johnson Syndrome. He is in critical condition with 3rd degree burns on the inside of his body and it coming through his pores causing large patches of rash that turn into very large blisters. Morphine is helping with the pain, but the doctors tell us the worse is yet to come.

As for what has caused this is still a mystery. It could be the Bactrim that he took for his pneumonia or the Mycoplasma Pneumoniae --a bacteria that causes pneumonia. They will never know for sure. He is at a Children's Hospital and receiving excellent care.

I would love to hear from anyone on this forum who could shed some light on this and what to expect in the weeks and months to follow.

Thank you!

Many university, hospital and government based sites have excellent info on this. https://www.mayoclinic.org/diseases-conditions/stevens-johnson-syndrome/symptoms-causes/syc-20355936

Hey everyone.......my 8 year old grandson has been diagnosed with the Stevens-Johnson Syndrome.

Mayo Clinic, John Hopkins , the hospital where your grandson is are great sources of information. As far as I know there are no doctors on this site.

I am sorry to hear about your grandson though.’:(

So sorry to hear this. I don't know anything about it but I am sending you the best of wishes that he has a fast recovery from it.

It sounds like you have been well informed which is good.

Yes both mycoplasma and / or the drugs can cause an allergic reaction leading to SJS.

When was he diagnosed?

It can take a few months to recover and most do , it’s just a slow process. Be patient and I wish him a speedy recovery!

My heart goes out to him and to you, Sue. Holding you in my thoughts.

Billie28.....the doctor told us it was NOT an allergic reaction rather a 'side effect' of Bactrim or the mycoplasma. He was diagnosed on March 10. Still in serious but stable condition. Several months? Wow!

Happy to report my grandson is no longer in ICU, and has been moved to a regular room. He is growing new skin and can even take a few steps. He still has trouble keeping food in his belly--and the docs aren't sure why as of yet. Luckily,, no infections and next week, he begins rehab. Still a long journey ahead for him--I have been amazed at how brave he has been through all this and never once complained. It's been a rough few weeks, but we are so thankful he is doing so much better--and feeling so much better!

I am so so glad!

Thank you for the update, Sue. So glad to hear of your grandson's progress! Keeping you in my thoughts.

Sue,

I'm so happy your grandson is doing better. I'm betting he's going to pull right through. I wanted to tell you something, I went to school with a guy who had a REALLY BAD case of SJS. He was in the ICU for months and then even longer just in the general ward of the hospital. He definitely pulled through. It actually inspired him to go into the health field. He's married now and living a very good life. With the right care and management, people definitely can do great!

Fudgie......I am so happy you shared this with me. At this point, we don't know what to expect as he recovers. We hope that he makes a complete recovery, but it's hard to say. Glad to hear the guy pulled through this and living a good life now! I hope and pray my grandson will continue to improve every day, and will be able to live a normal life after all he's been through. Thanks for sharing!