Latest Update-02/23/09
It has been a solid 5 months since the last update. Sorry for the lack of updates but things have been busy to say the least.

Alex is still wearing glasses but no longer has to wear the eye patches. The ophthalmologist says Alex's eyes are looking really good but still too early to tell if he will require any minor surgery.

Alex's seizure patterns have shifted from the "overnight" time frame to the late afternoon/early evening time frame. It's better than the night time seizures but it still stinks. This has been a long hard winter for Alex and quite frankly for us. He has been sick on and off for that past 3 weeks and last Thursday (02-19-09) Alex had a really big seizure that had him in yet another hospital stay. Almost all of Alex's big seizures lately have been accompanied by a spell of not breathing. Beth has had to breath for Alex on 3 separate occasions now. It only lasts 30 seconds or so but it seems like an eternity. It's long enough for his lips to turn blue. Scary to say the least. Alex was also in the ER on Friday to treat dehydration. He had 600ml of juice (glucose free IV) and he was home.

Alex still has diastat administered to him 3-4 times a week for myoclonic clusters mostly, in fact. tonight was one of those nights.

Alex is still tolerating the diet and is now down to a ratio of 3.5:1. he has a Keto-clinic in March and Dr. Bergin will most likely lower the ratio to 3.25:1. Remember, it is a good thing that it's getting lowered but it is a little scary at the same time. As we have said before some kids have seen seizure activity decrease as the diet ratio has lowered. We'll see and keep you posted.

In the last update Beth and I were contemplating having Alex wear his helmet again especially after that last "stitches" incident but we have decided to delay that for a while. He has whacked his face a few times since then and broke his glasses but no serious injury.

Alex is LOVING pint of peanuts and is doing well in the class room environment. He is in good hands with Mrs. B who is a very caring teacher who pays special attention to Alex.Along with a great group of aides in his class that not only work well with Alex, but have also developed a sharp eye to notice any unusual behavior/seizure activity.

All in all things are going okay and Alex is getting in trouble and picking up bad habits from his older brother Billy and we ARE thankful......always!

I want to acknowledge Angela and Billy. They have probably seen more "emergency" situations than most kids see in a lifetime. They are always ready to snap into emergency mode and follow instructions to the "T". We are very blessed are very grateful to have such great kids! Aside from the emergency situations...well...lets just say they don't make enough duct tape :). Kidding Angela is doing great in school and is on fire for ready which is great. Billy was going thru a little behavior problem in school but that's all set now and he is enjoying being a Tiger Scout.

I'm sure I missed something but I promise that we will update the site more often.

 We appreciate your concern for Alex and we, as always, are humbled by you.

Our Little Alex
Alexander was born on July 8^th 2005. Little did we know that 4 months later we would be delivered news about Alex’s health that would change our lives forever…..especially little Alex’s.  When Alex was first diagnosed with Dravet Syndrome (Severe Myoclonic Epilepsy of Infancy or SMEI) my wife and I tirelessly researched this devastating disease and found that there are less than 500 people worldwide that have been diagnosed.......not a comforting statistic. Most Dravet Syndrome victims suffer from severe verbal, physical, and mental conditions before they reach puberty. There is no known cure for Dravet Syndrome and is nearly impossible to control with conventional seizure medications.

Alex, right now, has early intervention come once a week to work on physical and mental development.  Our hopes are that this early intervention will result in the best development for our little Alex. Alex, as of 07-10-07, has started the Ketogenic Diet which has proven to decrease and in some cases eliminate Myoclonic Seizures. The diet has changed every cell in his body from starch based to protein based. This diet is very evasive and is considered a treatment more than a diet and of course it comes with a list of side effects. Alex was admitted on 07-10-07 and had to endure a 5 day hospital stay so his medical team could monitor the effects of the diet on his little body. So far so good, the diet has significantly decreased the Myoclonic seizures.

One of the toughest aspects of this disease to deal with is the uncertainty of the outcome especially knowing that Alex will NEVER be cured. Dravet Syndrome is a progressive disease and is truly a “take it as it comes” condition.  Alex, at the age now of 3 years, has been in the hospital more times than our whole family put together and is on 5 different medications that he has to take 2 times a day one of which is only available in Germany. Prayer and faith keeps our family positive and smiling and is the best medicine for Alex.