Monday, April 16, 2012

Sam's scary case of Steven Johnson's Syndrome

I'm adding Sam's story here so our family is aware of what has gone on this past week, and also that we can look back and remember this moment and reflect on the miracles Heavenly Father gives us!

Some background:

On Tuesday Sam started to have a little fever, but he wasn't about to let that slow him down.  He often kept playing and was able to get around, and didn't complain much.  But late Friday evening his fever had continued even more (102.7°F), and Saturday morning was really achy and crying that his eyes and head hurt.  I immediately thought the worst.  And remembered sad stories of parents who lost their children within a week to Meningitis, I thought I better get him in quick as he showed many of the same symptoms (minus the vomiting).

I took him in on Saturday morning to see the Dr.  They took a flu culture which came back negative and decided that whatever he had, would be best treated with Amoxycilin, an antibiotic.

I gave him a dose of that on Saturday afternoon.  By very early Sunday morning I got up and noticed that he had very large lesions on his lips and on his gums.  He also at this point started vomiting.  That freaked me out and I took him to the 24 hr pediatric center.  They took a Strep culture which also came back negative.  The Dr. listened to him breath and said he could have pnemonia, either that or a severe case of oral herpes(cold sores).  He gave me a couple of additional prescriptions of antibiotics to replace the Amoxycilin.

This morning Cathi called me at work and said that his condition has worsened even more and that he was  unresponsive and fought her terribly when offered medicine.  She again took him to the Dr this morning and after a group of them at the clinic discussed what their ideas were, they mentioned "Steven Johnson's Syndrome" and that we should take him to the Primary Children's Medical center immediately.  They called ahead for us and they immediately accepted him.

They put him on oxygen to help him breath and gave him some pain reliever to bring his fever down.  (Which at this time is normal). After several Dr's observed him the agreed that he has Steven Johnson's Syndrome(SJS).  Which they believe was caused by a severe reaction to his initial sickness of a Mycoplasma infection (walking pnemonia).  They don't believe it was necessarily a reaction to the Amoxycilin mainly because the reaction to an antibiotic reportedly takes several days to a week, whereas the dramatic sores in Sam's case appeared less than 12 hours afterwards.  Either way, the Dr's are putting him on Intravenous immunoglobulin (IVIG) which is the current treamtent for SJS, as well as other prescriptions to battle the original problem of the mycoplasma infection which is really affecting his mucous membranes and clogging up his lungs.

Sam getting some Oxygen to help him breathe.
His poor lips and eyes must really hurt.
What a tough kid!
 His poor eyes and lips have taken a beating.  He is unable to talk or eat.  He is being fed through a feeding tube because his throat and mouth hurt so much.  His main trouble is with his eyes, inside and around his lips, and lungs.  When I left the hospital the optomologist really helped by giving him some drops to relieve the pain and swelling.  He appears to be in much less pain and discomfort than he was going through earlier.  He was able to rest, and later open his eyes to watch a movie. The team of Drs mentioned that he would need to stay in the hospital for observation and IVIG treatments at the least until Thursday or Friday, possibly longer, so he has a little road ahead of him.

Don't worry:  While SJS is relatively rare, the folks at Primary Childrens mentioned that they have seen it more often.  Cathi told me the Dr's told her that the two different causes of SJS (viral and drug induced) are both dramatically different from each other and that the viral caused version is much less dramatic (which if you google SJS, the pictures can give you nightmares.  The sores on his body (other than on his lips and eyes, are random lesions that cover less than 1% of his body.  SJS is not contagious and nobody else in our family has any signs of any kind of illness.

 Dad and I gave him a Priesthood blessing this evening.  If you could also keep him in your prayers.  This sweet little boy could use them.

Oh, and Happy Birthday Austin, sorry your birthday kinda took the limelight this year.


Elayna said...

Sam is one tough kid. we will definitely keep him in our prayers. please let me know if you and Cathy need a break I am happy to come up and sit with him for a bit. I know how the hospital can wear on parents. give him a hug for me!

Stacey said...

Poor Sam! I am so glad you got some answers. Please let me know if I can do you need any help with Oliver? I would be happy to watch him so that Cathi can stay at the hospital. Good luck, we love you and we are praying for Sam...get better Buddy!

Marcia said...

I am so thankful that Cathi took Sam in this morning. Reading about this syndrome on the website of Mayo Clinic, I realize that we are very blessed that it was identified before things really went crazy. Sweet little Sam, I will pray for you.

Bhatch said...

We are so sad that Sam is having to go through this, and hope that he is getting some comfort and recovering quickly! Sam is in our prayers. Our kids (as are we) are very worried about him and they want to know if he is in good enough spirits to accept visitors.

Josh said...

Hang in there Sam! You're in our prayers. What a trooper, can't imagine the pain you're going through. Leave it to a child to take a curve ball from life and show us how to make it through. We wish you a speedy recovery.
Cara & Josh

Cara said...

We are praying for Sam and hope he recovers quickly as well.

After reading what has happened to poor Sam during this last week, I thought how grateful we are for doctors who can diagnose and treat such a rare symptom. It is scary to not know what is causing your child's sickness.

Anonymous said...

So sorry to hear about this. God bless.