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Toxic Mold and Epilepsy




Yum

February 26, 2013 by Andrea Fabry 18 Comments

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 altogether.

Kristen's root canal

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 watermarks. (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 the 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 that, 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.

Toxic Mold and Epilepsy

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 that 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 about the incredible benefits Kristen experienced in the post Hazards of Root Canals.

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 started 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.

Filed Under: Microbes & Mold, microbes and mold, Mold and Microbes, Uncategorized, Unseen Reality Tagged With: epilepsy, ketogenic, kristen, medication, seizure, seizures

« Toxic Mold and The Yellow Wallpaper
Food As Medicine »

Comments

  1. Anonymous says

    February 26, 2013 at 4:17 pm

    Tears! Thank you for sharing your beautiful life & family! You are a constant encouragement, especially on days where it seems all of this (toxic mold) is just too much! Blessings to you!

    Reply
    • Vetonica says

      March 19, 2018 at 8:50 am

      Amazing. Thank you for sharing your story my son out of the blue starting having a seizure 2 months ago and Ian
      Now looking into seeing if we have mold in our home

      Reply
  2. Megan says

    February 26, 2013 at 5:45 pm

    An amazing story beautifully told. The first of many, I know, so proud of you!

    Reply
  3. Sue says

    February 26, 2013 at 10:14 pm

    I weep in joy with you. How wonderful.
    Sue

    Reply
  4. your loving mom says

    February 26, 2013 at 10:28 pm

    Having two special need children, I can relate to the pain. Thank you for the story. Knowing your walk with God, I know that your strength comes from Him. Where would we be without knowing that He cares for our children and will make a path for them?

    Reply
  5. Anonymous says

    February 27, 2013 at 1:45 am

    So full of joy for you all! Congratulations on another huge success! May you enjoy many, many more! Sending so much love your way, Mrs. Simmons

    Reply
  6. Julie says

    March 4, 2013 at 4:34 pm

    That’s awesome! So happy for her. It never occurred to me that seizures can also be mold related. You would think that by now I would always “think fungus first!” Anyway, my friend’s son was recently diagnosed with adolescent onset epilepsy. Do you think it may be mold related or do you think it is more likely because of hormones?

    Reply
    • Lori says

      September 28, 2018 at 6:21 am

      My son also is 15 years old and just started having seizures. We believe the home we just moved out of may have had mold. Any advice would be appreciated.

      Reply
      • Andrea Fabry says

        September 28, 2018 at 8:21 am

        That’s great you are no longer in that home. You’ll want to be sure your new home is free of water damage. Kristen has not had any issues since 2008 when we left our home. She was 14 at the time. Ketogenic diet can be helpful for those with a history of seizures.

        Reply
  7. Andrea Fabry says

    March 4, 2013 at 4:51 pm

    Julie,
    I think there are a variety of triggers for seizures just as there are various triggers for autoimmune illness. Toxicity in the home ought to be one factor considered when evaluating the onset of an illness. But certainly hormones/diet/exposure to chemicals are all potential triggers.

    Reply
  8. dnaburch says

    March 9, 2013 at 11:59 pm

    *tears*

    What a beautiful story! 🙂

    Reply
  9. Ronald says

    February 12, 2018 at 11:40 pm

    I’m Ron from Michigan I have EPILEPSY my self the house that we live in has mold in it my seizures have got worse they got me on Dilantin Keppra and depakote. My seizures have started when I was 19 years old is when I had my very first one and we could not figure out why I moved up north the start a new job and I have my very first seizure but then I’d never had a problem for a while and then I went to my grandparents for Christmas and then at my 20th birthday I start to have problems again so I had him checked out at the hospital and let eaten and they put me on disability what they never told me why my seizures have started I’m about to get another MRI done I’m going to head and go to another hospital to see what’s going on I like to know what’s going on with my seizures it what happened to prevent them it actually ruin it my whole life

    Reply
  10. Pat Fike says

    April 15, 2019 at 7:22 pm

    We have not been so lucky as my grandson was afflicted by black mold at 3 months old. He was miss diagnosed by so many Drs and given all the meds which were contraindicated for Dravett syndrome. My son left his home and all belongings and lost their house to foreclosure. The mold problem for babies is that their immune system is not fully developed.
    I wish you, your family, and especially your daughter all my prayers for all of you and pray she fully beats this terrible mold problem. The government has known about this but the CDC refuses to acknowledge
    God Bless
    Pat Fike

    Reply
    • Andrea Fabry says

      April 16, 2019 at 7:47 am

      Thanks so much for sharing this story, Pat.

      Reply
  11. Gussie says

    June 22, 2019 at 3:46 pm

    Thank you for sharing! My daughter is been diagnosed with epilepsy and the school she goes to is being torn down and rebuilt due to mold and other things. My daughter started having seizures 6 months ago out of no where. And is on depakote and lamictal, and after trying 4 different meds this has been working so far. But I too have noticed a change in her behavior and many other things that cause fatigue . She is not even the same kid😩 I would have never even considered this to being a contributing factor.

    Reply
    • Andrea Fabry says

      June 22, 2019 at 4:05 pm

      So glad you made this connection. Kristen has been off seizure meds for 10 years now so there is much hope.

      Reply
      • Edia says

        June 24, 2019 at 4:22 am

        My grandbaby started having seizures at 6 months. We blamed the many immunizations she received at pediatrician office at 6 months; however, the apartment she lived in had Isaura wirh mold. The apartment owner just moved them to the apartment door since their lease was not up yet. She is almost 14 now has been on up to 4-5 meds at a time to no avail. She is now on only one (a bad one – Onfi) and CBD oil. She just started crawling; she is almost non verbal. Some days she babbles a lil, but mostly stays quiets. It breaks my heart to see that her development is delayed due to the seizures and the meds. How do you test for mold on babies? Any good doctors in Texas?

        Reply
        • Andrea Fabry says

          June 24, 2019 at 5:40 am

          Good job making this connection. The best treatment is to find a clean environment free of mold. The ERMI test can help determine if there is mold in the apartment. If there is toxic mold in the apartment, then the child’s health is no doubt impacted. I’m not familiar with specific doctors in Texas, but the first step is safe housing.

          Reply

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MEET ANDREA

I am a certified Building Biology Advocate, a former journalist, mother of nine, and avid CrossFitter who likes to think outside the box. After our family's health crisis in 2008, I learned to ask questions about what's in our food, our water, and our air. I hope to empower you as you seek to live safely in a complex world. Thankfully, small steps lead to big changes. Let's travel this road together, one step at a time.

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