Memphis Docs Try Different Approach

This is a difficult post to author.

Taylor is 13 months old but he's operating on the level of a 2 month-old.  He has been experiencing these seizures for almost 9 months now.  When we checked into the hospital in Memphis on Monday, the doctors...who are some of the best in the world in dealing with Infantile Spasms... were very honest with us.  They said, typically, children that have experienced uncontrolled Infantile Spasms for this length of time are extremely complicated to treat effectively.  They told us to expect an uphill battle, but they would be leading the charge very aggressively.

Just to give a brief recap, since the beginning of August when Taylor was correctly diagnosed, he has taken 3 major medications:

1) ACTH - steroid shots given by mom&dad twice a day.  These knocked out most of his seizures, but he was still having 4 or 5 a day.  He was also very irritable, gained a ton of weight and was generally a floppy, nonactive mess.  After 7 weeks, we took him off of that and started him on...
2) Vigabatrin- No change in the # of seizures, but suddenly he was active again, rolling around and fairly happy with no appetite for solid food.  After 6 weeks on this, the Atlanta docs decided to ween him off of this and start...
3) Topamax- Shortly after starting this low dose drug, Taylor started having increased seizures...15 to 20 a day.  Finally, our appt with Memphis docs arrived...

Each of those medicines, we started out at a low dosage and worked our way up over several weeks.
The Memphis docs have a very different approach to treating patients.  An approach that really makes sense.  They hook up 27 electrodes to Taylor's head to analyze his brain patterns while they administer high-dose medicines.  You see, even when Taylor isn't having a seizure episode, his brainwaves are abnormal from this epilepsy.  The overall goal is to completely suppress the seizures and normalize his brain activity so he can begin learning again.  In Atlanta, we would only do an EEG every few months to check to see if the slow drug treatments had been effective.  In Memphis, the doctors have proven that fast, high dosage treatments usually bring positive results quicker than the slow method.  Their theory is, the faster you can suppress the seizures and normalize the brain wave activity, the better chance the child will have at pulling through this.

They did give us some positive news Monday night after the initial tests came in.  They were pleasantly surprised with Taylor's MRI and his EEG readings.  For a child that's been experiencing these seizures this long, they usually see atrophy in the brain scan and a very irregular brainwave pattern, especially during sleep.  Taylor's MRI was nearly perfect and his brainwaves were only slightly irregular...even during his sleep.  That gave them confidence that Taylor may have a better chance than was originally expected.

As we were already taking a medium dose of drug #3 with a mixture of a little of drug #2, the Memphis docs ratcheted up both doses to high levels.  As we expected, it brought his seizure level down to about 5 a day again, but his brainwave pattern was still a little irregular.  The docs decided to stop #3 completely and reintroduce Drug #1 in a high dose right off the bat....mixing with drug #2.  We are in day #2 of this course of treatment.  They said it would take 3 solid days of this to get a true measurement of where we stand.

I apologize for the rambling update, but thought it necessary to pass along the info.

I returned to Atlanta last night to get a week's worth of work in.  Today, Dick Taylor joined Lane and Taylor at the hospital in Memphis.  When they're done on Saturday, they will all drive back to Kansas City.  I'll meet them there to spend Christmas & New Years.

Taylor needs your prayers now more than ever.  We really appreciate your Love and support.
Happy Holidays.  Here's a pic of Tay right out of his bath, just before checking into the hospital: