All about Tasya

Some of you may or may not know the story about my daughter Tasya.  She has a rare form of epilepsy that caused her to have both grand mal’s and drop seizures that was likely to have been caused by a birth defect somewhere deep in her brain (at least that is the best guest by her neurologist at Stanford).

For many years, her seizure activity was out of control although there were brief periods where things were good.  One common problem we faced was her constant temper tantrums, often violent, often for no reason whatsoever. Nothing we tried to resolve the issue worked.  My wife Hillary, a one time counseling psychologist, was stumped as was the outside psychologist we worked with.  Freightened by the prospect of having to resort to tougher measures to help control her behavior we began to lose hope.  Until we ran a food sensitivity test called LEAP from Signet Diagnostics.

The LEAP test is different from allergy testing as it isn’t looking for an immune system response.  Instead, it is looking for pro-inflammatory responses from all of the cells in your blood stream.  These pro-inflammatory cytokeines, leukotrienes and prostaglandins have been linked to diseases like Irritable Bowel Syndrome, Migraines, Coronary Heart Disease, Arthritis and much more.  We were using the results to help Tasya control her seizure activity which, while much better than in years gone past, was still a problem with her occasionally having drop seizures which caused her to slam her head on her desk at school, or fall down and hurt herself while walking.

Our thought process was since migraines and seizures are very similar, maybe the LEAP test and its dietary recommendations would help Tasya.  While we did see some small gains in seizure activity, the biggest change was with Tasya’s behavior.  Before we ran the test in September of 2005, Tasya would have a temper tantrum 5-7 times a week.  Since we implemented the changes in her diet (see http://www.carbonbased.com/modules/news/article.php?storyid=90) we have seen an incredible and dramatic change in her.  She has only had 2 minor tantrums since the change and she has gone from a easily irritated child who was unable to control her temper, to a happy go lucky kid full of hope and happiness.

If you think that’s it, you’re mistaken.  Her improvement in seizure activity has been as dramatic as her behavioral improvements due to 2 major changes we made starting in mid-October.  First, we began to switch her from low dose Keppra, Zonegran and Phenobarbital to low dose Topamax and Lamictal. The second, and equally important change was to increase her taurine levels (a neuroinhibitory amino acid) to 4 grams a day (2 grams twice daily) thanks to a talk I had with Dr. Parris Kidd http://www.dockidd.com.  In the 14 weeks since we made the change, Tasya’s drop seizure activity has almost completely stopped (only four mild ones – two before going to the dentists office and two after having food with aspartame in it). Her nocturnal seizures only happen when she is under undo stress and even those are milder than in the past.

While we are under no false assumption that she is “cured”, what we do have is a child who isn’t afraid of going to school, is happier and sharper, as well as being more relaxed and self assured. 

For a more detailed story about Tasya, you’re all going to have to wait for my book to come out.  It is already at 175 pages with about 250 planned so I’m not that far off.  I’ll keep everyone updated as the publishing date comes closer.

One thought on “All about Tasya

  1. Pingback: Pat Sullivan Blog

Comments are closed.