Sunday, July 24, 2011

On the Bubble

We have great news to report!  We are now 5 weeks into the Ketogenic Diet, and we have seen Will's seizures slowly become less and less frequent.  Right now he is averaging one seizure every two to three days.  At first, he was having them every day, then every other day, then every 3rd day...  most recently he went about 6 hours short of going a full FIVE DAYS without a seizure!  Also, we have completed weaning the Vigabatrin, which is a great thing.  The side effects on his personality as well as the risk of vision loss from Vigabatrin were very tough.  Will has also completed the full course of the Amoxicillin as treatment for Lyme Disease, so now the only drug we are giving him is Keppra twice per day, which hasn't ever really done anything for Will...nothing good, but nothing bad either.

We have seen great changes in Will over the past week.  His alertness, energy, mood, and focus have all improved.  We don't know if this is the result of the drug weans, the implementation of the diet, the Lyme disease treatment ending, or any combination of these.  For the moment we are excited and optimistic that the diet is improving Will's condition, and we pray for complete seizure freedom someday.  It would truly be a miracle if we are able to treat him through diet!  For the first time in months, we feel like we actually have HOPE.

Will has become much more verbal and babbles more than we have ever heard him do before.  He is still not saying words - mostly just "Da, Da, Da" and "Ga, Ga, Ga", but he's working on it more than he had since the seizures started in January.  Even more, he is learning to wave, which is a huge deal!  He waved to Dan's sister and her family the other day as they were in their car ready to leave our house, and also waved for Marie (our babysitter) on Wednesday.  His wave is very labored, he holds his hand out and moves his fingers one at a time but it is very obvious what he is trying to do.  We keep working on it.
Will enjoying the sprinkler in the backyard

We had an appointment at the Clinic earlier this week, and the main reason for this appointment was to discuss Will's progress on the Ketogenic diet, and whether or not we were ready to proceed to surgery.  A few days prior to his appointment, we hadn't seen much improvement yet and Will had a bad seizure so we were feeling ready to schedule his surgery.  Then, as if on cue, Will began to show improvement so we knew that we needed to give the diet more time.  Surgery is definitely still a possibility, however his neurologist was encouraged by the success that he is having on the diet.  We all agreed that the diet is showing huge progress and we have the luxury of trying this for a while longer before needing to make a decision on surgery...a decision we have dreaded.  Will's neurologist described 3 types of surgical candidates - those where the need for brain surgery is obvious, those where brain surgery is not an option for one reason or another, and finally, those where brain surgery is an option but there are no guarantees that it will work.  Will's case falls into the third category, but right now he is, in the words of his neurologist, "on the bubble" as to whether surgery is the right thing to do.  Anything is possible at this point.

We know that there is still an underlying issue in his brain, however if he is able to work through it while not suffering from seizures, that would be incredible.  There have been some cases where the Ketogenic diet actually heals the brain abnormalities that cause infantile spasms.  Of course, if Ketogenic diet doesn't work, we are keeping the surgery option on the table.  Hard work, perseverence, patience, faith, and luck all are key ingredients.  The diet isn't easy, and is extremely time consuming.  We remain optimistic that the diet is showing great signs of improvement, and hopefully it will continue so that we don't have to think about surgery in the future.

We are including some links to some interesting information on the Ketogenic diet, which have also been added under the information tab to the right of the blog.  If you have the time or interest it is worthwhile to take a look.  Who would have known that we would see the most improvement from something having nothing to do with drugs???

Epilepsy's Big Fat Miracle - New York Times

Dateline NBC Special on Ketogenic Diet - Part 1

Dateline NBC Special on Ketogenic Diet - Part 2

For now, we are cautiously optimistic and are happy with what we are seeing in our little Buster - we feel like we are actually starting to have our little boy back!


  1. Kelly & Dan,
    This is SUCH GREAT NEWS! Thank the Lord that this is working, and that surgery is not the first choice right now! I am so happy for you that Will is becoming more "himself" and that he's practicing new skills. How encouraging!

    Hugs & prayers to all of you!

  2. Kelly & Dan,

    Such wonderful news for a wonderful family!!! You continue to have my prayers!