Depakote was added to Topamax and Neurontin in May.  We saw a decrease in seizure activity as time went by, but not enough to gain seizure control.  Depakote has one side-effect that was an added bonus:  weight gain.  Michael now weighs 32 pounds and is at the 45 percentile for his age.  He looks much better.  We took Michael off of Depakote and started him on Lamictal. At this time it is too early to tell how well it will work for him.  

July was a busy month for TS events.  We were in San Diego for the Tuberous Sclerosis National Family Conference July 5-7.  It was a wonderful gathering of families, friends, members of the Tuberous Sclerosis Alliance, doctors and speakers from all over the world.  There were 3 breakout sessions each day on different aspects of Tuberous Sclerosis.  Matt and I learned quite a bit.  We also saw old friends and met some new ones!  The picture to your left are some of my friends on TSCTalk, an email support group for those who are affected by Tuberous Sclerosis.  We are also part of a support group in Western Washington who have children with TS and on July 29th we attended their 3rd annual Tuberous Sclerosis Picnic.  We are pictured with some families to your right.

Halloween and the first of November were sad days as we said goodbye to Michael’s therapists and teacher. Since Michael turned 3 on November 5^th he is no longer eligible for 0-3 early intervention and graduates to preschool. So far, preschool has been an interesting adventure for both Michael and Mommy. By the notes written by his teacher he seems to enjoy class. He had a couple of falls while at school but nothing serious. We are looking into a bicycle helmet that Michael can wear while playing outside.

Today was Michael’s last day of preschool. Christina, Katie and I brought cupcakes to share with the class, and to spend some time with everyone before school was out. It was an emotional day! Michael starts ESY (Extended School Year) next month for 4 weeks. His teacher, one of her aides, and his therapists will be missed, as they are not returning next year. Michael has done very well in preschool with these wonderful people!

Michael did have seizure control with Lamictal, however, shortly after we began to taper his Topamax he started having seizures again. We continued the Topamax taper and increased Lamictal without success. Michael was an emotional rollercoaster with Lamictal. One week he would be very affectionate – the next he would become very aggressive. The decision was made to stop tapering his Topamax. Instead, we decided to taper Lamictal and add a new drug called Keppra. Michael has been taking Keppra for a few weeks now (along with Topamax, Neurontin and Lamictal). At this time he has gone from about five seizures a day to 1 or 2 a day that last about 3-4 minutes long. He is scheduled for a 72-hour EEG video monitoring in August so his neurologist can get a better idea of his seizure activity. In February, we found out that Michael has one small angiomyolipoma in each kidney.

Development wise, Michael has made some improvement. He is walking better as his balance has improved. Michael can walk up a flight of stairs while holding an adult’s hand. He will grab and hold onto an adult’s hand when prompted. He climbs on everything, including the kitchen table! Michael continues to be very oral and chews on almost everything. His babbling comes and goes, but at this time he has been babbling "mama" for over a week now. Sometimes he repeats it after I say it.

June 2003

Keppra didn’t work for Michael and his aggression became worse.  We became concerned with his behavior towards Katie (biting, hitting and pulling hair).  We decided to wait until after his 72-hour video EEG session last August before making any changes.  Michael had six seizures in 24 hours, which gave his doctor the information he needed, and we were able to go home early.  We were told that Michael has spasms.  His neurologist put him on Vigabatrin.  Vigabatrin is an excellent drug for Infantile Spasms and Tuberous Sclerosis.  Unfortunately it is not FDA approved so we have to purchase it from Canada.  Michael’s spasms stopped the first day he started taking it and has been spasm free since!  He was weaned off Keppra and now takes Topamax, Neurontin and Vigabatrin. 

Michael had another video EEG this month.  His doctor told us that during his last veeg Michael had 2 electrical seizures during sleep without clinical presentation meaning Michael was having seizures while sleeping peacefully.  He stayed for another 24 hours and he continues to have electrical seizures while sleeping.  We’ve increased his Vigabatrin.

March 26^th will always be a momentous occasion for me!  Michael said Mom!!  His first word!  I have prayed for this moment for a long time!  He doesn’t say it often but I hope it is a sign of good things to come!

Michael is doing very well in preschool.  There is slow improvement with his goals, but there IS improvement!  They informed me that he says a-da sometimes, which means “all done”!  This is one of the few signs we use with him.  The only sign he will do at times is “more” and this happens during mealtime.  Michael continues to be dependent on us for getting dressed and eating.  He is doing better eating with a fork but continues to need hand-over-hand assistance.   We hope to try potty-training sometime soon, however, we feel we should train Katie first.

Michael has started showing more emotion lately.  He used to be so passive before – if Christina took a toy from him he would just look for something else to play with.  Now he shows frustration, aggression and defiance.  Although these are negative responses it’s nice to see him acting like a typical child!   

You can read more about Michael at his new website:  http://www.caringbridge.org/wa/michaelj