Saturday, November 16, 2013

Owen's Story: Part 4

If you missed the first parts: 1, 2, and 3

The Seizure Battle

Owen's battle with seizures became recognizable to us when he was about 18 months old.  He was at therapy with Bryan, and had a grand mal.  After a trip to the ER, Owen was referred to the pediatric neurologist.  Yet another specialist for our tiny boy.

The neurologist conducted many tests, including a sleep deprived EEG, and concluded that Owen had seizures typical of a patient with Angelman Syndrome.  Owen was started on Keppra.  The seizures went away.  Life got back to normal.

Over time, the Keppra became less effective.  As Owen gained weight, he needed a higher dose.  We'd start to see breakthrough seizures.  A trip back to the neurologist, a prescription for higher dose, pretty easy fix.  Wait a few months.  Repeat.

Then, the Keppra seemed to stop working.  Owen's seizure pattern changed.  He began having drop seizures.  That's when he is just fine one minute, and hitting the ground hard the next.  These didn't have the typical sleep session afterwards, and began happening more and more often.

He hit his head a lot.  We went to the ER for stitches twice.  Then the neurologist added a second med.  Depakote.  It worked on the drop seizures.  Now he was on two meds.  But he wasn't having seizures.  He did however, begin to have tremors in his hands.  Our first experience with a side effect.

The year Sydney was born (2011), was a horrible season for seizures.  We weren't quite sure what was going on, and the neurologist was stumped as well.  We trialed several different meds, looking for the combination that would provide relief.  Nothing worked.  He had severe side effects to a couple of meds.

Dietary remedies were recommended.  The neurologist suggested started the ketogenic diet at Spokane's Children's Hospital.  Bryan and I agreed.  Perhaps a natural, dietary approach would finally get us over the seizure battle.

We watched First, Do No Harm.  We had grand expectations for this diet.  The week  long introduction was hard.  Sydney, Owen and I stayed in the hospital.  The other kids rotated between Bryan, my parents and friends depending on who was working.  I was still working, and put in several hours from the hospital.  It was crazy!

But, it worked!  For the first time in years, Owen wasn't having seizures.  His food wasn't very appealing.  Lots of mayo.  Little protein.  Littler meat.  Scarce fruit.  Every bit had to be carefully weighed.  It was a lot of work.

Owen hanging out at the hospital during his fast.  He took it really well!

First taste of KetoCal after a 3 day fast...

The first keto meal.  Hot dog, mayo and applesauce.

Sydney on my lap after three days in the hospital.  

But Owen remained seizure free and we were able to get him off all of his meds.  The problem?  The hardest side effect we've ever dealt with.  Owen developed Pica.  Though the doctors have never agreed that there was a link between this diet and Pica, we disagree.

We think now that because of all of Owen's hyperactivity and movement throughout the day, his caloric need was MUCH higher than anticipated by the dietician.  He probably needed many more calories on his diet plan.  His keto levels were really high.  And we think he was starving.

Since he couldn't talk to tell us he was hungry, he did what anyone would do.  He began to seek food.  Except he grabbed leaves, stick, bark and paper.  Everything he ate at that point was fibrous.  He had major problems with constipation, and maybe he was seeking relief.  We'll never really know.

But it was horrible.  I talked to the neurologist about it.  He suggested trying to make it through the summer on the diet to give Owen's brain a longer period without seizures.  We agreed.  And continued to provide increased levels of supervision to keep Owen from eating everything.

Then began the worst summer of our lives.  After a trip to Silverwood in July, I rushed Owen to the ER because of what I thought was an abdominal blockage.  (Wouldn't surprise me with everything he ate...)

The ER administered several enemas without results.  The x-ray didn't appear to show anything. They finally just sent me home with instructions to go to the GI doctor again.

The next day, Owen continued to be in extreme pain.  I took him into Spokane's ER instead of the little local hospital.  They agreed there was definitely something wrong.  More enemas.  No results.  Nothing odd on the x-ray.

The CAT scan revealed that his appendix was a little large, and they decided to watch him for possible appendicitis. Two days later, he finally had poop.  Major blowouts.  The doctors were worried and ordered a stool sample. Of course once that order came in, Owen stopped pooping.  I tried to convince them that it was the enemas finally working.  They didn't agree.

Owen had blood coming out of his g-tube.  They did an upper GI procedure and found some irritation.  Owen was once again diagnosed with extremely slow moving intestines.  But nothing new for him. He finally sent a poop sample in. At my insistence, they checked the appendix again.  He was diagnosed with appendicitis and scheduled for surgery.

Except that a couple of hours later, the nurse came in and said he had been found to have C-Diff.  The surgeon refused to do the surgery saying that the C-Diff explained all the enlarging and fluid in the GI tract.

After research, I requested immediate discharge so I could mix up some keifer and increase Owen's probiotic levels to fight the C-Diff.  He continued to have unexplained abdomen pain. And he was once again having seizures.  More drops.  A lot more. 

I took him the next day to our local doctor, just for his opinion.  He knows Owen, and is willing to take mine and Bryan's opinions seriously.  After looking at the bloodwork, he became concerned that there was an infection.  He also suspected the C-Diff diagnosis, as Owen only had the one episode of explosive poop.  Which he said was probably a result of all the enemas.

He also said that it takes at least 3 days to get a positive diagnosis on C-Diff.  The hospital diagnosed it in 6 hours.  If Owen was so infected, the doctor said that he'd be pooping everywhere all the time.  Which Owen wasn't.

His next C-Diff test came back perfectly normal.  So we still aren't sure if he ever actually had it or not...he enjoyed some low carb keifer in the meantime though, which we calculated using some basic math into his keto diet. 

Owen gave more blood.  The white count was down again, so we decided just to watch him.  Nothing exciting happened.  Except his entire personality changed.  He used to be super happy.  Now he was miserable and disagreeable.  He shredded books.  He  ripped paper.  He ate bark.  And balloons.  And candy wrappers.

No matter how closely we watched him, he would find something.  If the other kids left a book out, it was destroyed.  He broke all of our blinds and began eating those.  He pulled fuzz out of cushions and chairs.  He moved quick.  It was horrible.

But his seizures were finally under control.  So we thought....

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

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