satori's story
After a three day pre labour / labour, Satori was born, 28th April 2007, 5:25am at Mullumbimby Hospital.
Satori's heart rate dropped quite low five minutes before his birth. On entering this world his heart rate picked back up but he was not ready to take his first breath. 15 minutes after he was born, he started showing signs of seizure activity. It was about 30 minutes before Satori took his first breath and 1 hr before he started breathing on his own with assistance of CPAP. 2 hours after being born Satori was air lifted by Helicopter to Royal Brisbane Women's Hospital, while Chris and myself followed by car. This is where we were to stay for the next 4 weeks.
During our 4 weeks in Brisbane Chris and myself were told numerous heart wrenching things about our new arrival. We were told that we would never take him home, he would have severe brain damage and that he would never eat, walk or talk.
Satori was 4 days old before we got our first cuddle. It was about 7 days before he stopped showing signs of seizure activity under medication. It was in this first week we were told that he had no reflexes. Satori was 10 days old when we saw him wake for the first time.
Over the next two 2 1/2 weeks we saw numerous set backs in Satori. He moved from bolus to a continuous NG feeds as he wouldn't put on weight, he was constantly frustrated and showing many other side effects from his anti-seizure medication. He would go blue and limp every time it was given. We became more then equipped at putting in Satori's nasal gastric feeding tubes and also suctioning when he got into trouble. It was at the end of his 4th week in Brisbane that we finally got transferred back to our local hospital at Lismore.
It was here that he moved from continuous feeds back to a 3 hourly bolus feed. Satori was taken off his anti-seizure medication, as there had been no sign of seizure activity for 3 weeks. In the first couple of days of this we saw Satori smile and even laugh, then as the levels became lower we saw a baby that seemed to be fitting all the time. They then started Satori on Dilantin his second anti-seizure medication, though he was tolerating this one much better and was not so sedated, it wasn't holding the seizures at bay.
At 6 1/2 weeks of age we took Satori home for the first time. It was mid June 2007
Over the next six weeks we saw Satori's seizure activity change dramatically. Has minor but constant twitches and body pulls increased to 20 plus grand-mal's a day. His Dilantin dose had gone up to 2.5 ml's twice daily. This was an extremely high dose and seemed to be doing nothing. It was the start of August when we started him on some anti-seizure herbs from our naturopath and instantly saw these drop to six a day and then 4 a day within a week.
At 10 weeks of age Satori had started to swallow. This was something that we were told that he would never do.
In mid September, Satori and myself took a trip to Adelaide, it was here that a doctor suggested that we try oxygen therapy. For the first time in 4 1/2 months we saw our first seizure free day. Satori stayed on oxygen for the next 2 months and the only time we saw a seizure was when has was not on it. Around the start of November, we started to wheen the oxygen, the seizure activity that we were now seeing was a minor split second eye flicker. It was here that we started him on Cell Foods (liquid oxygen), Zeolite and Glyco-nutrients. Within four days of starting this combination we saw no seizure activity for a whole month. Satori next and last seizure to date was December 4th 2007.
Satori was now six months old and was starting to eat small amounts of solids orally. Another huge triumph.
Over the last five months Satori's Dilantin has been dropping and he has remained seizure free during that time. His current dose is 0.6 ml's twice daily, nearly a whole 2 ml's of a dose less then eleven month ago.
Recently his Pediatrician Dr Anthony Underwood made us aware of the benefits of a hyperbaric oxygen therapy (HBO) in Cerebral Palsy patients.
What is Cerebal Palsy (CP)
Definition
Cerebral palsy (CP), or static encephalopathy, is the name for a collection of movement disorders caused by brain damage that occurs before, during, or shortly after birth. A person with CP is often also affected by other conditions caused by brain damage.
Description
The affected muscles of a person with CP may become rigid or excessively loose. The person may lose control of muscles, or have problems with balance and coordination. A combination of these is also possible. Those with CP may be primarily affected in the legs (paraplegia or diplegia), or in the arm and leg of one side of the body (hemiplegia), or all four limbs may be involved (quadriplegia).
A person with CP may also be affected by a number of other problems, including seizure disorder, visual deficits, hearing problems, mental retardation, learning disabilities, and attention deficit hyperactivity disorder . None of these is necessarily part of CP, however, they may accompany the disorder.
The mechanism associated with cerebral palsy may vary greatly however the term Periventricular Leukomalacia (PVL) is characteristic of most children with cerebral palsy. PVL is due to ischemia (disruption of the essential blood supply at a capillary level) resulting in hypoxia (oxygen starvation). Hypoxia causes inadequate development of nerve cells resulting in vast regions of poor development leading to the clinical presentation of CP. Hypoxia regions are NOT dead but classified as regions of non-function and low metabolic activity.
Numerous studies publish the fact that Hyperbaric Oxygenation increases the delivery of oxygen into hypoxic tissue. By raising the levels of available oxygen the damaged region undergoes a process referred to as ‘neuroplasticity’ which is the ability to begin to salvage back what is damaged. Neurplasticity is observed will ALL neurological conditions i.e. stroke, spinal cord injury and CP etc!
NeuroPlasticity can be assisted which is where the rehab side comes into the process. HBOT is the fuel to the machine; rehab is the direction the machine has to be driven.
Hyperbaric Oxygen Treatment (HBO)
Hyperbaric Oxygen Therapy delivers 100% oxygen at a pressure greater than sea level atmospheric pressure while the patient is enclosed within a certified pressurized chamber. The patient breathes 100% oxygen while wearing a mask.
When red blood cells deliver only a limited supply of oxygen to tissue cells, negative physiological changes occur. Injuries, infections and diseases can cause a drop in tissue oxygen level to almost zero. World wide research confirms that breathing 100% oxygen under pressure forces the oxygen to reach those tissues and body systems affected by injury, infection, or disease and accelerates the body's healing process. Statistics from Hyperbaric Oxygenation demonstrate tremendous improvements in hundreds of conditions one of these being Cerebral Palsy.
Stem Cell Treatment in China
Stem cells are the master cells of the human body. What define stem cells from other cells is their ability to self-generate themselves and the ability to differentiate into other cell types.
Stem cells are at the center of a new field of science called regenerative medicine. All stem cells? regardless of their source? have three general properties: they are capable of dividing and renewing themselves for long periods; they are unspecialized; and they can give rise to specialized cell types.
Self-regeneration is the ability of stem cells to divide and produce more stem cells. During early development, the cell division is symmetrical i.e. each cell divides to gives rise to daughter cells each with the same potential. Later in development, the cell divides asymmetrically with one of the daughter cells produced also a stem cell and the other a more differentiated cell (such as brain cell, blood cell, etc.)
When stem cells are being transplanted into the body and arrive (through migration or through direct injection) into the injured part of the brain being targeted for tissue regeneration, the stem cells are coming into contact with growth chemicals in the body. These chemicals program the stem cells to grow into the tissue surrounding it, allowing for regeneration to happen.
Treatment costs
Children with complex PVL require an initial base line of between 100-150 hours of HBOT to commence some form of neuroplasticity response. It is imperative that the initial saturation (100-150 hours) is done as quickly as possible. This provides the deepest penetration into hypoxic ischemic regions of the brain that are not developing correctly. The cost for the minimum 150 hours is $18,000.
The Stem Cell Treatment is $25,000. This is just for one treatment and there will most probably be more.
These treatment costs are really just the start and as Satori’s parents we would love to see him receive at least these two treatments by the time he is 2.
Other treatments that we are looking at in the near future are
Lokoma, Vibrational Training, Median Nerve Stimulation and Advanced Biomechanical Rehabilitation.
Thank you for your time
Alysha, Chris and Satori
