Saturday, December 6, 2014

Because Stevens Johnson Syndrome. Because Toxic Epidermal Necrolysis. Because Bactrim.

I know a LOT of people hate the new trend of 'Because' and then just one word. I like it. It's succinct and to the point. It also keeps people like my husband, who only hears/reads every 3rd word, on the same wavelength, thought pattern, brain wave...see, I've lost you.

Because ADHD.

But, I as my post states in the title, I am going to talk about our old frenemy SJS/TENs, and in our case, caused by Bactrim. Everyone is familiar with these images of Kai. If you are new to my blog, I apologize in advance., but this is what my then 3 year old endured from taking Bactrim. Bactrim because he had a highly resistant MRSA ear infection from his 4th PE tube (ear tube) surgery. A surgery that was supposed to stop or reduce his incidence of ear infections. But MRSA is not a typical ear infection. It is usually an Acquired infection, especially so deeply rooted in his ear canal. Simple steps of hand washing and proper use of PPE would probably have prevented this infection. I work in the medical field, so I can say that. And, its my blog...

So, instead of living daily with fear and hate for what this medication did to my son, I try to spread awareness. I know people get tired of everyone 'Spreading Awareness' or that every day is 'Insert Cause' Awareness Day. I know. Because I am one of those people that annoy you. Everyone has a cause. Well, I have quite a few.

Causes stem from passion. I did not know that because until I had my son(pictured so bleakly above),
I had no real true passion in life. After Kai, my passion was/is Down syndrome.

Then that passion led to Peter, who also has Down syndrome, and we adopted from Ukraine. So, International Adoption and awareness of the plight to save orphans with Special Needs from Eastern Europe became another passion.

And then this. Stevens Johnson Syndrome. Toxic Epidermal Necrolysis.

Something I had never heard of. Something not related to Down syndrome. Something I had never encountered in the NICU I work in. What the hell was this?

He had this damn ear infection with the tubes. Surgery to remove them. Antibiotics. The left ear just kept oozing. And oozing. Went to the pediatrician after the drops from surgery did nothing. They gave us Amoxicillin. Finished that. Still oozing. I asked for Omnicef because that is what we always used for his ear infections in the past. Finished that. Still oozing. Took him back to the ENT(much former and twice removed ENT). He prescribed something I cant recall. I started the med but decided since this was the 3rd antibiotic and he still had the infection, which now had a smell to it and profuse oozing, I wanted a culture. I suspected MRSA. I was right. But it was a highly resistant MRSA that only a few drugs could treat it. Bactrim, a very common sulfa drug, was on the list. I had heard of it, who hasnt? Well, to be fair, I work in a NICU, and at the time, a children's hospital, so I've heard of a lot of meds. But I know this one is common. Bactrim, twice a day, for 14 days.

We didn't make 14 days.

It's amazing what you recall after the fact. Some things I remember, some I do not. And there is no rhyme or reason to it. I have general dates he was in the hospital, some pictures I remember clearly, some I have no recollection taking. I have memories of sitting in his room in a chair, hidden behind a huge pillow, crying...sobbing. Because it was the middle of the night and I thought no one was there. But they were. I cant remember the nurses name, but she always wore headbands with big flowers on them. I have a card they all signed, maybe I can find her name there... She was there. And she knew just the right words: Are you OK Mom?  Not too intrusive, but enough for me to know that she was there. I told her I was OK. I just needed a few minutes to cry alone, where no one could see me. Where I could be weak, for just a moment...God knows my boy didn't cry, so who was I to shed a tear.

We made 12 days.

He actually had a small 'diaper rash' for 4 days prior to The Day. After the fact I realized, foolishly, it wasn't a diaper rash, it was a Target Lesion. I say foolishly because it was on the fat pad far above his actual genital area; way out of reach for a diaper rash, especially a 4 day rash that never got better or worse. Just a target looking bulls eye. But day 11, he had terrible 'allergies'. His eyes and nose were running like I had never seen anyone''s ever before, let alone his. He didn't have those kind of allergies. I tried a few allergy meds like Benadryl and they did not even touch the symptoms. Later that day, he was laying on the floor in the warm sunlight flooding through our very high foyer window. It is on the side panel on the main page of my blog. He is in red. He looked so peaceful. I actually snapped several photos that day of him laying in that spot of sunshine.

Little did I know my sunshine was about to be put out.

He slept restlessly. I could hear him on the monitor. So we brought him in our bed. He tossed and turned and moaned. I thought it was his damn ear. I mean, he was on the almighty antibiotics, for almost 4 weeks total between the three now, how could he be sick??

The next morning his eyes, nose and mouth were swollen and rash covered, along with a rash on his torso. It was a Saturday(one of those details I remember because I had to work and my husband took him to the DR).We were told allergic reaction to Bactrim, stop the med, start this new med that was a prescription strength antihistamine. We did. I slept for work, because, it was only an allergic reaction.

That, was of course, before I learned just what an allergic reaction could be. I thought anaphylaxis was the most severe form of an allergic reaction.

That evening in the ER at Texas Children's Hospital I learned, learned is the wrong word, I witnessed the beginnings of the most horrific allergic reaction ever. By that evening his eyes were swollen shut and the rash was raised. He was rocking back and forth holding his head(remember Kai has Down syndrome and was very non verbal at the time). I sent my husband to the ER with him while I got ready for work. Yes, work. I know, sounds callous considering he was taking him to the ER at the children's hospital I worked at. The thing is, I have 2 sons with Down syndrome, Peter just being home from Ukraine 6 months at this point, and I had no PTO(personal time off) or absences left to take without receiving a written reprimand.  So, I went to work and my husband took him to the ER. I didnt tell anyone for quite a while about Kai being in the ER. Not until my 1st rounds were done. My coworkers quickly urged me to go check on him and questioned WTH I was doing there. I needed a job, is what I was doing there...

I happened to come in the ER room right before an Attending physician arrived. We talked. I gave her the recent history. She mentioned most likely it was Serotonin syndrome from all the antibiotics. She briefly mentioned SJS, but assured me is was WAY rare, like 1 in a million. That shouldve been my clue then. For ages, my family has only done rare...and continue to do so. My grandmother was getting chemo for breast cancer and the IV leaked and the meds burned her skin. At the time, there was only one med, a salve, that you could put on the IV chemo burn to help. Allergic.

So, I said OK, Serotonin syndrome, we wait for the meds to process out. We look for blisters, just in case. I went back to the NICU. I came back an hour later to check on him. Still in an ER room, swollen, moaning....clearly needing something more. No IVs or monitoring equipment on him at all. One would think a heart kid with Down syndrome would score at least some leads and a pulse ox. So I came in. Asked Dad how he was. The same. Then I looked.

There it was.
The beginning of the nightmare.
There was a HUGE blister on the inside of his lip that clearly wasnt there an hour ago.

And  our nightmare began. Maybe someday I can write it all out. This is the most I have written step by step since it happened a little over 2 years ago. I misspoke on a FB post saying it was 2011 he had it, but it was 2012. I know one might think how can you forget such a thing, but coupled with heart surgery, international adoption, a rare complication with that child and just 4 kids in general, it happens. June 2012.

So, if you have made it this far into my post, you will get to the original point of this post. SJS/TENs, as much as I hate it, it is another passion that I must advocate and educate for. I am happy/sad to say that I receive several messages/tags via facebook and text every year with pictures of rashes since Kai had this. I am so fearful every time someone asks. I literally have panic and anxiety. BUT, I will trade that every time to look a a picture for someone and tell them what I think. I am by no means a doctor and tell every person to call a medical professional and take their child in, regardless. I am happy to say, since Kai, I have only seen it one other time, this summer. And I knew. I burst into tears as soon as I saw the picture of the child. It was a child with Down syndrome, as well. We look out for each other.

She did have SJS. Was taken to the nearest children's hospital, but thankfully thankfully, released the next day. She was also taking a Sulfa drug, like Bactrim. I can say now, that it is a rash you will never ever forget. As soon as I saw it, I knew.

So again, my point. Yes, I know. My title says succinct so its short but my writing lies. I have lots of feels.

One of the founders of the SJS support group/SJS support group for kids, named Julie(great name, btw) McCoart McCawley is having a holiday challenge for SJS. She gets to do this because in 1994 at 10 months old, she had the battle of her life and her family paved the way with the foundation and website they now run/maintain. Her story is nothing short of a miracle, esp in 1994.

So, Julie has asked us to participate in the holiday challenge. All you have to do is print this sign; even I could do it...

And then take your picture with it and post it to any social media site. We already did it on FB, but I wanted to add it here with a little of our story. Our story that I know in my head a thousand times, but that I know many have never heard. SJS is a now a passion I must advocate and educate for and about. It so rare, supposedly, but that does not mean people should not know the sign and symptoms.

Here are our SJS challenge photos

This Is Kai.


  1. I only came across this post studying for my NCLEX exam as a nurse. What an amazing and inspiring story. Glad Kai is doing well. What a beautiful child you have.

  2. Wow. I am educated. Wishing you all every positive thing there is in the world

  3. I am currently in the hospital with my son as we speak. He got diagnosed with SJS today. No words. I am scared and dumbfounded. I just want my nine year old son to get better. He only got diagnosed because we kept taking him to his doctor and brought him twice to the er as his symptoms were not improving. Thanks for sharing your story. Even as rare as this syndrome is, people need to be aware so they get diagnosed faster instead of waiting a whole week like we did to finally get answers. Nothing they prescribed us was working, I can't imagine if more time progressed and he would have gotten worse. I just can't :(

    1. Hi Diana
      I'm so very sorry to hear this news. If you need someone to talk to I can give you my email and perhaps we can exchange phone numbers.
      There are several fantastic SJS groups on FB and a site And for kids, Kai's story is there as well.

      My email is if you'd like to connect. Best wishes❤️

    2. And they need to give him IVIG. It's the first line of defense and they need to protect his eyes because ocular involvement is almost always there and can lead to many problems up to blindness. They have special lenses made from amniotic material they can put in his eyes and it will prevent corneal abrasions. I do hope you are in a children's hospital or a hospital that has a burns unit bc that is how they should be handled.