The Flog – The Fabry Log

When we left our home in October 2008, Kristen was a high school freshman, filled with dreams of starring in a high school musical. When recovery became harder than expected, we decided to skip high school completely.

Kristen was our seizure child. She was diagnosed with complex partial disorder six months after moving into our Colorado home. We found her the night of her first seizure standing in a closet, fixated on a certain area of the ceiling. Eight years later our first-grade son would point to this exact location, asking about the water marks. (This haunting memory is detailed in this previous post.)

We immediately put Kristen on seizure medications. We experimented with Trileptal, Depakote, Keppra, Topomax, and Lamictal over the years and watched as she became fatigued and less verbal, struggling with handwriting and cognitive function. Never once did we consider the cause of her seizures. The first time I read any medical expert suggesting we look at the cause was two years after we left our home, in Dr. Natasha Campbell-McBride's book Gut and Psychology Syndrome.

The majority of epilepsy, particularly in children, is classified as idiopathic, which is a medical term meaning 'we have no idea what causes it.'

Campbell-McBride lists the vitamin deficiencies and multiple side effects that accompany seizure medication, making the point that:

Anti-epileptic drugs work by suppressing brain activity: they neither cure the condition, nor do they prevent susceptibility to seizures . . . due to suppression of the brain activity, these children are not able to learn well, they do not do well academically or socially and their personality changes. I have lost count of the loving parents who described their child as a ‘zombie’ due to anti-epileptic medication.(p. 78)

I would add my name to the list as we put Kristen on a 504 plan with our school district simply to allow her to take a nap or rest each day at school. We tried to take her off medication once in those seven years, but the seizure activity quickly returned.

In her chapter on epilepsy, Campbell-McBride discusses the history of seizure management which, prior to the discovery of anticonvulsant medication, relied strictly on diet. Hippocrates treated epilepsy with fasting. The ketogenic diet,developed in the 1920s at the Mayo Clinic, led to a 95 percent seizure control success rate with a 60 percent cure rate. The ketogenic diet provides a 4:1 ratio of fat to the combined weight of carbohydrate and protein, which is called a ketogenic ratio. The reason the diet works remains a mystery; however, according to Campbell-McBride:

It appears that ketone bodies are just used by the brain as an energy source while the body is dealing with the real cause of the seizures . . . By severely restricting carbohydrates in the diet the activity of pathogens in the body is also severely restricted.

When we connected the toxicity of our home with the health of our family, including Kristen's seizures, in the spring of 2008, we took a chance and weaned Kristen off her seizure medication. As far as we know, she remains seizure-free. Little did we know we would one day embrace a diet similar to the ketogenic.

When our detox began in full force in 2009, Kristen jumped on board with all of our kids. One of her numerous symptoms included severe knee pain which hampered her desire to run and walk. Acupuncture helped, but the severity of the condition remained a mystery.

One day I read about the health issues associated with root canals. Kristen had a root canal done on an upper front tooth after tripping during seventh-grade track. The article explained the bacterial "goo" that gathers in the dead tissue, draining the individual's immune system. Another article described the connection between this particular tooth and knee pain. With Kristen's blessing her front tooth was removed in the spring of 2011. I have written in this previous post about the incredible benefits Kristen experienced.

Her knee pain improved, but her anxiety, verbal challenges, chemical sensitivity, and chronic fatigue remained. She completed her GED with the help of a tutor in the spring of 2011 and enrolled part-time at our local community college.

Kristen kept up through Facebook with the parade of musicals performed at her former high school and continued to mourn the loss of her dream. I felt her loss and pain on a daily basis. Would it have been better to stay in Colorado? Questions and doubts were my daily companions for many months and years after leaving our home.

I wondered how my kids would one day view our difficult decisions. Last fall, Kristen wrote an essay letting me know that deep down, kids know that sometimes parents do hard things for loving reasons.

About four years ago this coming October my mom did the bravest thing I have ever known anyone to do. She convinced my family to leave our belongings and everything in our five-story house behind. We moved out of our beautiful home and I don’t think anyone understood why. There was a lot of anger and my mom felt doubt and sadness. Yet she stayed strong. We left our home because it was infested with toxic mold. After two remediations that made all of our chronic symptoms worse she decided enough was enough. She moved us out . . .

Kristen went on to describe our numerous medical experiments that left us with a radical diet as our final option. Exhibiting wisdom beyond her years, Kristen wrote a paper for her English class linking toxic mold with the symptoms experienced by the main character in the classic short story, "The Yellow Wallpaper." (Read her paper here.)

Kristen took an acting class at the college and began voice training in earnest. She began to think about auditioning for one of the college's musicals, but her ongoing fatigue and remaining health issues kept her focused on recovery as well as her photography.

Three months ago Kristen decided it was time. She prepared 24 bars of music and with overwhelming anxiety auditioned for Pima Community College's winter musical, All Shook Up. She just wanted to get in, to be part of the cast. She would be happy to make the chorus. Or, dreaming big, she would perhaps get some small speaking role where she could display the talent that's been waiting all this time.

All Shook Up debuted Thursday night. I wept when Kristen walked onstage, and wept as she took her final bow. She wasn't in the chorus, she was the lead, playing "Natalie" and "Ed." Someone else saw what I have seen all along, and that is that dreams can come true. Not always the way we've seen or imagined.

Sometimes it's better.