• We are healthy relaxed and settling into this tropical climate. We drove around yesterday with our guide Billy. He was very sensitive to Drake's needs and told us later in the day that he has a son with Downs Syndrome. We drove to Sarchi which is famous for its hand painted ox carts. We also drove to Grecia and went to a central market and ate lunch. The local food was great and was all stuff Drake can eat (GF/CF). It was crowded and colorful. We bought cheese and local fruit for our supper with colones the local money. Then our guide Billy took us to a beautiful waterfall on private property called Lo Chorros.
  • It is a warm morning here and we woke to the sounds of children and chatter in Spanish, distant dogs and cars. La Rosa is a little oasis in this city. The grounds are green with flowering plants and the pool looks inviting. Drake is still asleep. He has been sleeping soundly all night with out any problems. Dixie and I are eating Joseph Schmit truffles and coffee for breakfast. When Drake wakes up we will walk over to the breakfast area where we hear others eating and visiting.
  • It is with great joy that I share our latest news. On February 16th we will be traveling to the Institute of Cellular Medicine in Costa Rica. I will not attempt to explain the science of adult stem cell transplantation, but simply put Drake is going to get 18 million cells derived from cord blood. These cells will be a mixture of CD34 and mesenchymal cells. We will be charting new ground.



    Drakes behavior driving Mom crazy Autism Every Day - 7 minute version http://www.youtube.com/watch?v=FDMMwG7RrFQ&feature=related
  • The last diet trial we did was a gluten free, dairy free, corn free and soy free diet. This diet is similar to a specific carbohydrate diet. We did a 2 month trial which revealed nothing conclusive. He continued to have regular seizures and some behavior problems. He may have slept a little better at night, but nothing was conclusive. So he is back on a gf-cf diet.



    We are scheduled to go see an allergist to help us get some conclusive answers. I am eager to feed Drake with confidence. From age 10-12 Drake did not grow. He recently put on 5# just in time for his 13th Birthday, which is a total weight gain of 10 #s for this year. I am so proud of his weight gain it represents a lot of hard work. I attribute his growth and weight gain this year to a series of Nystatin and antifungals, which have presumable cleaned up his gastro intestinal system and the series of 40 Hyperbaric Oxygen (HBOT) treatments. One of the changes we noticed with HBO treatment was that he started to eat more and began eating fruit again.

    Drake continues to take anticonvulsant medication and some vitamin supplements. We have made changes to both this year and will continue to make adjustments as the year progresses. We are trying some gentle oral chelation with DMSA. Chelation is the process of removing toxic heavy metals from the body. In the past we have felt Drake was too delicate to try this. He is tolerating it and is not having more seizure in response, which was always the concern.
  • We continue to feel confident that our best efforts for Drake will payoff. He continues to have regular seizures and is affected by them tremendously. Progress is slow for Drake. As time goes by the hope for this child has changed. When the seizures started I prayed that they would stop. When they continued I prayed that each medication we tried would work. As time progressed I prayed for a miracle that the seizures would stop and Drake would have a complete recovery. Now I would be happy if he had less seizures and could communicate better. I pray for him to be as healthy as possible so that he may reach his potential. At times I question my sanity, but hope is a vital element when raising a special needs child. Without hope we would be lost on this journey and would have no compass to guide us. The world of medicine is advancing all the time so anything is possible. Today hope and honesty are delicately balanced. We move forward with the honesty to face reality and the hope that the outcome is positive. I find solace in the AA serenity payer: God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.
  • A mother poem

    Unremitting stream of uncertainty
    Flows under the surface of each day

    Yet this Mother wears a smile
    Like a cape of protection

    Her eyes show a weary journey
    Shouldering the weight of two

    Isolation is the card that has been dealt
    I hold mine proud

    Two created you little one,
    But only one stayed to raise you

    Raising you from the depths of misery
    Walking the line between perfect moments

    And hell on earth
    Slowly climbing the ladder

    One step forward and two steps back
    Will this save you or set you back

    Moon light reading
    What doctor can stop the bleeding

    Praying alone my words quiet
    Warm tears offer no relief

    Humbled on knee’s whispering
    Please god please

    I will be strong just give this
    one thing back to me

    the bedside vigil is desperately urgent
    a life is on the line

    defeated night after night
    but not giving up the fight

    turning the check each sundown
    for another round

    in the quiet landscape of my mind I look for a hero
    And shudder when there is none

    Faith comes and like the wind
    Leaving my sails flat

    Those early days of disability cut so deep
    Loss . . . failed prayer

    Tragedy burrowed like a tick
    Swelling for all to see

    I failed?
    My best not good enough

    Hard lump in my throat
    I will work you like clay

    Reaching for a better day
    Modeling pressing pushing
    Standing back to get a better look

    We have come a long way to here little one
    And I never rescued you from the hand you were dealt
    Or found you a hero when I was in doubt

    The dust settles on this chapter
    Days turn into years giving way to new fears

    Perhaps I found you a hero
    That was here all along
    She was quiet until she found her song

    Her name is mother
    And like a mountain strong

  • Here we go from a GF/CF diet to GF/CF/SF/CF
    (Gluten-free, Casein- free, Soy-free, Corn- free diet).

    Drake has been on a gluten and dairy free diet for the past 8 years. It seems to help a little, but he still has lots of bowel problems (like bouts of diarrhea). When we go off the diet we see more seizures, more sleepless nights, more irritable bowel problems and generally worse behavior. I have always been jealousy of those parents that have tried a GF/CF diet and their children have had major reduction in autism symptoms. GF/CF seems to be only part of Drake’s Puzzle. So we are now going to eliminate soy and corn! Here is the theory. These 4 foods are known to be the top allergens. It is theorized that these foods can damage the duodenum. The glycoproteins from gluten, casein, soy, and corn coat the villi and can kill the villi. Which can lead to malabsorption and leaky gut syndrome. Chronic malabsorption means the body is deprived of things like calcium, iron, vitamin C, iodine, B complex, and trace minerals, all of which are vital in the normal functioning of our bodies and immune systems.

    Theses 4 foods are also high in a non-essential amino acid called glutamate. Simple put glutamate works with the excitatory receptors in a cell (if true no wonder Drake has problems sleeping thru the night). These foods soy, gluten, dairy and corn provide staggering levels of glutamate (and aspartate).

    Applying this concept to epilepsy. The brain suffers from the chronic malnutrition and the immune system is taxed. Then add high levels of glutamate at the synapse. The glutamate acts as an excito-toxin. It is theorized that seizures serve a vital purpose to burn up the excessive glutamate in the brain.

  • HBO Therapy, What is it?

    HBO Therapy, What is it?


    Hyperbaric Oxygen Therapy (HBOT or HBO) is a painless procedure in which a person is exposed to increased pressure, thus allowing greater absorption of oxygen throughout body tissues. This increased pressure allows more oxygen to reach the cells within the body therefore contributing to the many healing and therapeutic benefits. The concept of hyperbaric oxygenation has been in existence as early as 1662 but has only gained recognition in conventional medicine over the past 40 years.


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  • Hyperbaric oxygen therapy (HBOT) has been utilized to treat Autism in many countries throughout the globe. The rationale behind using hyperbaric for Autism is that the treatments increase cerebral blood flow and thus oxygen is delivered to areas of the brain, which are thought to be oxygen deficient. Greater amounts of blood and oxygen begin to stimulate cerebral tissues and aid in recovery of idling neurons. HBOT also reduces excess fluids and swelling of brain tissues which aid in neurological function and a less confused state in Autistics.

    Theoretically, it is conceivable that reversing hypoxia may lead to activation of self-repair mechanisms. Such neural proliferation is seen after reperfusion in numerous animal models of cerebral ischemia. The concept of increasing oxygen to the autistic brain through various means such as hyperbaric medicine is currently being tested in 2 independent clinical trials in the US.

    Hyperbaric is also used as a complementary therapy for the treatment of heavy metal detox for such materials as mercury. Hyperbaric assists in the metabolism of heavy metal removal. It can help a patient counteract the effects of heavy metal poisoning and helps the body deal with toxins even as noxious as cyanide. It is often used in conjunction with chelation and other detox procedures to help support the body to deal with the impact commonly seen in the removal of heavy metals, mercury, toxins, and other contaminants.

    Worldwide, medical researchers are discovering promising results with the effects of hyperbaric therapy on persons with Autism.

  • Seizures are a drag!