Keeping our Fingers Crossed!

As of about 4 AM Sunday morning, Will has officially gone SEVEN DAYS seizure free!!!!

We continue to see him move in a positive direction.  He is very happy, interactive, and energetic.  He is exploring and studying things like we haven't seen before, and advancing with very subtle little things that only those who have been watching him through a microscope would notice.  We still don't know if these things are the result of only the Ketogenic diet or a combination of the diet and him not being on mind-altering drugs, but at this point we think that there is no denying that the diet is stopping the seizures.  We'd love to know what an EEG would look like now. Is it clean, or is it still scrambled but we aren't seeing seizures?

Of all treatments to have success with (and we would have taken any of them), we are so thrilled that the one that worked is one that has very little risk to him, and does not have any nasty side effects.  We are trying not to look too far ahead, and just be happy that the seizures seem to be under control.  We still have the worry that there could be an underlying issue with his brain, however having seizure control is a huge accomplishment.  For right now, we are going to be happy for our little Buster!

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!

Counting Calories

Buster mowing the lawn

The past few weeks have been a bit...overwhelming.  Will's meals take a long time to plan out and prepare, and he eats 4 small meals a day instead of 3, so it seems as though a lot of our time is dedicated to making sure Will is fed and the diet is being administered properly.  We have to check his glucose and blood ketone levels twice daily and we also check his urine several times per day.  All of this keeps us very busy! We have also been very busy trying to get our poor neglected yard into shape again.  It honestly seems hard to find extra time for much of anything lately.

When we first got home from the hospital, things were very rough.  Will was only allowed 900 calories per day, and he was very hungry all of the time.  He often just stood in front of his high chair crying, which absolutely broke our hearts.  We took to eating our meals in the pantry with the door shut because it was just so sad to eat food in front of Will.  Of course, now we have created a monster because after seeing us do that, Jack has started hiding in the pantry and sneaking a LOT of cookies!  After a week, the dietician increased Will's daily calories to 1100 because Will had lost over 3 pounds and gone down a diaper size, and things seem to be much better now.

As our neurologist had predicted, we have been seeing definite improvement in Will since starting the diet but not seizure freedom.  Will has gone from a range of 5 to 10 seizures per day before the diet, to most of the time 1-2 per day, and sometimes they are only occurring every other day.  He has been more aware and interactive with us.  More than anything, he has been very happy, which is absolutely awesome to see.  Although the diet is definitely doing something, we can't conclude it as a success at this point, because in order for his development to move forward we need to completely eliminate the spasms.  So far, that has not yet happened, so we are bracing ourselves for eventual brain surgery but still hoping that things continue to improve.  One other good thing, the blood tests for Will's lactate and pyruvate levels came back completely normal, which means that we can basically rule out mitochondrial disease as a potential cause of his seizures.  This is a huge relief.

Bullseye Rash on Will's Arm

In mid-June we went on a family reunion trip to Pennsylvania right before Will's hospital admission to start the Ketogenic diet.  A great time was had by all, and we spent a lot of time outdoors.  Of course, that also meant we got bit by a lot of bugs while we were there!  We hadn't thought much of it until earlier this week when Will woke up with a rash on his arm that looked just like a bullseye.  Somehow, in addition to everything else, Will ended up with Lyme Disease!  Luckily, we caught it early, so he just needs to take Amoxicillin for 21 days and everything should be fine.  At this point, what is one more drug???  The only problem is that the Amoxicillin (or the Lyme Disease, it is hard to tell) seems to be causing Will to have an increase in seizures again so this will likely delay any decisions we can make about Will's next steps.

Thank you to everyone for following our blog and for all of your continued support.  We hope that everyone enjoys a wonderful 4th of July with their families!