Friday, May 17, 2013

Google- Blessing or Curse?

Wednesday, February 15, 2012

Ever since Eliah was a baby, and we were in the hospital for his first seizure, I have used the internet as a tool to research medical information.  When it comes to my child, there is no such thing as too much information.  I am like a sponge.  I want to know all the possibilities, good or bad, all the tests, and all the treatments.  This is the way I cope.

For years, other people have told me, "Don't Google anything, you'll just scare yourself".  But it's my responsibility as Eliah's mother to know as much as possible.  How else will I know what to look for or what questions to ask.  Yes, I run across a lot of information that makes me panic.  And yes, it would be easier to just put the computer down and tell myself everything will be fine.  Then there are days like yesterday, where Google may have saved Eliah's life.

Eliah has been taking his new medication, Lamictal, for twelve days now.  I have noticed some very good things, like laughing and more focus on babbling, and I have also noticed some small side effects.  And when I picked him up from Kelley's house Monday morning, I noticed a small rash around Eliah's mouth.  Kelley mentioned that he had been battling this eczema type rash over the weekend.  He's had it before, so it wasn't a big deal; just lotion him and wait for it to go away.

The rash didn't go away; it seemed to spread. By late last night, Tuesday night, I started to remember all the information I had read about Eliah's new medication.  Lamictal can cause very serious, life-threatening rashes.  This didn't seem life-threatening, but I pulled out the computer and started to Google photos of Lamictal rashes.  I found one that looked identical to Eliah's, and I immediately called the doctor. 

The Neurologist wanted to see Eliah first thing this morning, before I gave him another dose of Lamictal.  And after close inspection of Eliah's body, the doctor found the rash in several places, and confirmed that Eliah is having a reaction to the medication.  The doctor even said that if Eliah had taken one more day of medication, it could have put him past the point of no return. Now, herein lies the problem....

Lamictal is extremely dangerous, but unfortunately, was kind of a last resort seizure medication.  It is not even approved to be used in children under the age of 16 because of the severity of the reactions.  The rash is more likely to become Stevens Johnson Syndrome in children, 1 in 50 in fact.  If you have never seen what SJS can do, please Google it.  It's scary, painful and can lead to permanent deformity or death.  From what I've read, SJS is already in the body before someone develops any rash.

So where we are now is this, Eliah has several small rashes, a cough (another symptom of SJS), and has discontinued use of Lamictal.  The medication stays in the body for approximately five days.  During that time, his rashes will most likely get worse before they get better, and may turn into this life-threatening syndrome.  We have to watch carefully for fever, as that is another symptom of SJS.  I have to call the Neurologist every morning to give him an update on Eliah's condition.  And as far as managing the seizures, we are two steps back. 

All we can do now is wait....






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