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.

Tuesday, November 25, 2014

And on the 6th year, There was cake!

Kai has just turned 6. I know, I can hardly believe myself. Where has my tiny baby gone?

As Ive posted before, Kai has feeding issues. He has only progressed to purees and that is where we stopped. We've tried different therapists, OTs and SLPs, and no progress was ever made. Some said it was Behavioral, some said it was Sensory. We were finally recommended to an inpatient feeding clinic. The nearest one is 4 hours away. I have 4 kids, one of them is an infant. Not happening.

We switched from clinical therapy to in home therapy. It is easier on all of us and more beneficial to the boys, in my opinion. We landed a phenomenal occupational therapist from River Kids. Originally just for Peter and I started telling her about Kai and his feeding problems. She said she had feeding experience and would like to try, if I didnt mind. Uh, no I didnt mind!

She worked tirelessly and patiently for him for about 6 months. We talked off and on about his tongue tie. Yes, he has a tongue tie. Ive asked doctors since he was in the NICU if it needed to be clipped. Ive been told No by probably 6 different physicians, but it has always been a niggling in the back of my mind. After watching and looking and inspecting, the therapist said she thought his tongue was so tight that he could not move his tongue enough to safely manipulate food, and that he knew that and that is why he wont eat table foods. I scheduled an ENT appointment to see if we could get a frenulectomy.

So we saw the ENT. She said it was a severe tie and should be clipped, but that she didnt feel it would help with his feeding or speech...that was all neurological. Thank you doctor who has never laid eyes on my son prior to this. I didnt ask for your opinion on his neurological status, but thanks. I put aside my ill feelings towards her and scheduled the surgery. It was only a 5 minute surgery but would require anesthesia. No big news there; everything Kai has done require anesthesia these days. The surgery was scheduled. All we had to do is wait.

Kai had his frenulectomy in early July of this year. He wasnt in any pain after and it was completely healed in 3 days. Two weeks later, he was eating table foods. Yep.


Five years of frustration, tantrums, throwing food, purees...gone. I was overjoyed and a bit pissed as well. I shouldve followed my gut and had it done a long time ago. I am slowly learning that my instinct in regards to my kids is pretty dead on. But I try not to linger on that, it will only make me bitter.

Instead, we ate! And ate. Everything! We are still progressing through foods, but he has yet turned away anything we have given him or not been able to eat it.

Kai's birthday was this month. I was so excited. Ive waited for this momentous occasion for five years. This moment we all take for granted. That first birthday cake. Oh, how Ive waited! Every year. And then it doesnt happen. I just tell him, Maybe next year. This year was that year! We practiced a couple weeks before, just to make sure. He did great!

We sang Happy Birthday. Blew out candles. Touched hot wax after blowing out candle(learning moment). And then we cut the cake and passed it out.

And HE ATE CAKE :)  on his maroon spoon, but he ate it! It was a cherished moment and he was so proud as we all yelled and clapped!

This was one of those milestones I thought might never happen. Each year passing, I became more and more sure that he would never progress to table foods. I was told, he will eat one day. But it gets hard to believe. And you meet kids older than him that do not eat solids; that are on a liquid diet or have a tube. So you begin to wonder. Will he eat food? And now that it is here, it is like he has been doing it all along. All the memories of frustration and sadness flee out the window and are replaced with the joy of reaching that milestone. As it always does. No matter how simple or how difficult.

Im proud of my boy. He is growing up so fast. Doing new things every day. His speech is actually starting to come along now, as well. I cant wait!