Parker's Promise

1 year ago Parker was having 20-50, sometimes 100 seizures a day.  1 year ago he was on the ketogenic diet, an extremely strict and stressful high fat diet (4 parts fat to 1 part carb) where everything had to be measured to the 10th of a gram to try to control the seizures.  1 year ago we had nurses come every day to help with the seizures, the therapy, the diet, the medication.... Parker had no desire to walk, move, roll, crawl, or sing. 1 year ago all that changed.

On November 2, my husband started a new job for Medtronic in Minnesota. (We lived in San Diego.)  

On November 4th I went to an Epilepsy Conference near Disneyland and asked ALL kinds of questions.  I spoke with the The Brain Recovery Project and learned even more about hemispherectomies. I learned about service dogs for seizures, and tracking devices that track GPS and can sense seizures.  I asked about vagal nerve stimulators and new medications... 

But mostly I spoke with several leading neurologists and neurosurgeons face to face. I asked SO MANY questions about 2 things.  

• A new drug called Sabril or Vergabatrin that has a black box warning from the FDA that it can cause permanent vision loss that was sitting in a box at my house. 
• Hemispherectomies- A surgery where they remove or disconnect half of the brain.

I cannot express enough how incredible it was to go to that conference.  I came home with a plan.   I sent his records to Mayo Clinic and 2 other leading hospitals in the area for hemispherectomy consults. We were moving to an area with some of the best hospitals in the world and we were going to take advantage of that.  

On November 5th I gave Parker the new drug to rule it out.

On November 6th he was seizure free.

He was seizure free.  And has been for over a year.

One year seizure free.

You have no idea how incredible that is unless you have seen a loved one have seizure after seizure with devastating results.  Unless you have seen your little boy slowly slipping away before your eyes.  Your little boy who had come so far... only to slowly lose it little by little.  To watch him stare off and know a seizure was coming... and being completely powerless  There was nothing I could do but brace him and brace myself. Over 8 months we tried 8 different meds.  After 3 meds it is considered intractable epilepsy and meds are very unlikely to work.

I will forever be grateful for Dr. Shifteh Sattar that was willing to try so many meds and listen so incredibly well to a mother.  I will forever be grateful to UCLA and Dr. Shaun Hussain who correctly diagnosed Parker's seizures as infantile spasms, even though he did not fit any of the typical criteria.  Infantile spasms is a devastating type of epilepsy that deteriorates into even more devastating types. They are treatable if caught early, but Parker's were not.  He had seizures for 8 months before they were diagnosed correctly.  That seems so short now, but it was a devastating 8 months full of multiple hospitalizations, titrating up and down off many different meds, trying so many different combinations, and so many different hopes just to have them dashed over and over.  It was hard.

But that was a year ago. A life time away.  

And he is doing so great now! He is happy, funny, learning to communicate through signs or an iPad, he is rolling all over, learning to creep and crawl, puts weight on his right hand, sucks through a straw, is getting his dimples back, can propel himself in a wheelchair, plays with toys, can match pitch and rhythm, loves music and in every way is a delight. We are so glad we got to keep him.

He will always be at risk for seizures. Always. But for now I am enjoying the respite and enjoying my little boy.

Here are some recent videos, but I don't know how to make then work on phones well. The next post has lots and lots of new pictures, though!