Saturday, November 16, 2013

Owen's Story: Part 5

Seizure Overload & Walking

If you remember where we last left off, Owen was on the ketogenic diet, eating everything he could fit in his mouth, and having abdomen problems.

Finally in October, the abdomen issues came to a head again.  We took him back to the doctor who referred us back to Children's for testing.  They admitted him again.  They hoped to find an answer.  They hooked him up to the fluid that they give adults before a colonoscopy, hoping to clean out the cloudy bits they saw on the x-ray. 

Two full days of that going in and no nutrition or fluids.  He became completely dehydrated while admitted as a patient to the children's hospital. They had to call a specialist up from peds surgery to insert his IV for fluids.  Another lower bowel study indicated even slower function.  But nothing was suggested as a course of treatment. 

At our request, they did another EEG since his drop seizures had once again spiraled. This time the test lasted for over 48 hours.  At the 24 hour mark, the neurologist came in and asked us about his seizures.  I said I didn't think he'd really had that many, just a few instances of drops. He told us that Owen was having CONSTANT seizure activity.  They just weren't visible--doing damage to the brain and not showing through the body.

Owen was put on extremely high doses of strong meds.  The pattern slowed down, but didn't go away.  His attitude change had been the only noticeable symptom.  And we didn't recognize that symptom as seizure related.  The ketogenic diet was deemed a failure, and Owen was taken off.  The best news we had heard for a while!

Once again, I asked to be released from the hospital.  They had dehydrated him, put him on the wrong bolus (not sugar free like he needed for the keto diet, but the kind they give diabetics needing a sugar boost...).  They weren't finding out what was causing his abdomen issues.  But we had the seizure part figured out.

He stayed on high doses for a few months, and slowly got weaned off that.  Drop seizures continued.  We trialed different meds.  We got a helmet.  And then...something worked.  Owen is now on Keppra, Onfi and Zonisimide for seizures.  He takes clonazepam (another seizure med) for sleep. 

On this combination, he started walking!  He is making progress.  He's not needing the helmet. We once again enjoyed a seizure free summer.  Except this time we saw growth in Owen instead of problems.  

Owen enjoying the park on a recent shopping day.

He still suffers from Pica.  He will rip a book to shreds in minutes if given the opportunity.  He pulls covers out of DVDs and rips them.  We have to constantly be on guard.  But…he is walking!  Praise the Lord!  

I have noticed a few drop seizures in the last few weeks.  They are slowly coming back.  I think it might be a winter thing…maybe a sign of a cold?  Not entirely sure.  But we sure enjoyed the summer!

With all of the health struggles Owen has, we are thankful that our loving Father holds us all in His hands and knows the timing of everything in our lives.  Bryan and I are acutely aware of the fact that we could lose Owen.  With the Pica, bowel obstruction and rupture are possible.  Seizures increase his risk of injury and sudden death. His fascination with water could lead to a drowning. Or, Owen could outlive us all.  Life is uncertain.  But God knows the path that we will each walk.

I'm amazed at how much Owen has made it through.  Amazed at how much he has taught our family about unconditional love.   I thank God for bringing us our Angel here on earth.  I don't know why Owen has Angelman Syndrome.  I don't wish this syndrome on anyone.  But, I am praying that Owen will bring God glory with his life.  God does care for each of us.  And he knows what is best.  We just might not see the ins and outs of His plan on this side of Glory. 

For the rest of Owen's story, please click here: 1,2,3,4,5

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