It has been 9 months since the last update.
The last update stated that Alex was being weaned off of the ketogenic diet. well, as of March 2010 Alex was completely off the diet. I think it was more of a big deal to us than him. The day he was off the diet we gave him on Oreo cookie which had a significant meaning because that was the last bit of "regular" food he had prior to starting the diet. We asked Alex "how is it Alex" and he just plainly answered "It's a cookie" Beth and I were almost in tears because he could now enjoy food like everybody else and was so nonchalant about it.
In April of 2010 Alex was stricken with Pneumonia. This was one of the worse ordeals Alex had to go through. The seizure he had was extremely scary even for us.....he stopped breathing, the whole bit. Alex was in the PICU for 3 days with a seemingly uncontrollable fever, in fact they thought Alex had a blood infection. He didn't, thank God! He was in the hospital for another 11 days.
Alex is one tough kid! I just had to say that! Alex was weaned off of one of his medications, Keppra. Keppra is a medication that is known to have aggressive and behavioral side effects. We did not see this in Alex. what we did see however was major behavioral changes after the Keppra was completely weaned and out of his system. We are pleased with the seizure control since the Keppra has been weaned but the behavioral issues have proved to be challenging and tiring. Now we are faced with a new set of challenges and that's administering punishments to Alex, that's right, punishments. Alex is as "fresh" and mischievous as any other 5 year old. So Alex has his fair share of timeouts. At first it was a very difficult thing to do I mean how do you punish a child with a severe condition...but we adjusted. Beth and I quite often take a step back and say "Thank God Alex is well enough to get in trouble."
Alex is still attending the "Pint of peanuts" program coupled with his regiment of therapies. Alex has his good days and bad days and misses about 30% of his school days but even with that Alex has been developing in his speech and fine motor skills. he isn't to his age level but he is making some mock improvements. For example last year he couldn't really pronounce his "S's" of "F's" but now he is starting to use them in words.
All in all we are very pleased with Alex's condition right now. He is having more good days then bad. One last thing, Alex is back to wearing glasses. No biggie.
Unfortunately Alex has qualified and is eligible for a trip from the Make a Wish foundation. I say unfortunately because I wish he didn't qualify for this amazing and generous gift. It means that he has a life threatening disorder which Beth and I constantly try to forget. I had a moment of feeling sorry for ourselves but now I am starting to truly realize how lucky we are and how great this trip is going to be not only for Alex, but for the family as a whole. Make a wish has been so kind and generous. This trip is going to be a wish come true. And everyone is able to go! Even Treasure and Alex's PCA Renee .
Long story short we are leaving on December 2nd to go to Disney. Alex is sooooooooo excited. We are posting a blog type of page off this web site just like we did on the trip to get Treasure. Click here
We appreciate your concern for Alex and we, as always, are humbled by you.
Our Little Alex
Alexander was born on July 8th 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. It is truly a moving target. Alex has a sister Jordan (16), sister Angela (11), and a Brother Billy (8).
Alex, right now, is attending a pre school type program in our local school system and has a regular IEP schedule of Physical Therapy, Speech Therapy, Occupational Therapy, and Adapted Physical Education. Alex's speech and fine motor skills are delayed. Alex is on a strict regiment of Clobazam (not FDA approved) and Depakote. So all-in-all, right now, Alex is doing pretty good. There are days of seizures and hospital trips but right now things are going good.
When Alex was around a year an half things were looking pretty bleak for our little guy. His myoclonic activity was through the roof (over 250 myoclonic seizures per day) and we were a wits end. Alex started the Ketogenic Diet on 07-10-07 and proved to be most effective in significantly decreasing his myoclonic seizures. Alex was actually weaned off of one medication while on the diet, Phenobarbital. Like some medications the diet lost it's effectiveness and Alex was totally weaned off the diet in February 2010. Since then Alex was weaned off another medication, Keppra. The diet does not always work but it worked for Alex and we highly recommend it although it is a tremendous amount of work.
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 5 years, has been in the hospital more times than our whole family put together. Prayer and faith keeps our family positive and smiling and is the best medicine for Alex.
Latest Pictures of Alex
(click on picture to enlarge)
Alex (middle) with
Billy and Angela
Alex with Billy and Treasure (Alex's service dog)
Alex (right) with Billy and his cousin Nathan
Alex's thumbs up for clam chowder
Alex having fun in the leaves
Parents and Children with Dravet
Having a child with Dravet Syndrome will change your life forever....nothing is easy especially if there are other siblings involved. When we first found out that Alex had this dreadful condition we did not no where to turn. If you are a parent or guardian with a child who has been diagnosed with Dravet please e-mail or call us with questions 774-565-0446.
"My Father, if it is possible, let this cup pass from Me; yet not as I will, but as You will."