Jojo's Story

This is a great story from one of our practice Mama's concerning the life threatening illness of her youngest son. 

We take a general interest in the health and well-being of our patients. It's not totally uncommon for a "How's it going" query to end up in a place like this. Below is Julie's story in her own words. 

The History
Written December 8, 2014

Josiah (whom we affectionately call JoJo) was born August 31, 2008.  He had his first seizure 8 months later, on May 1, 2009.  He had been fussy all day, but that evening while the family ate dinner and he sat on Brian's lap, he suddenly stopped fussing.  He became unresponsive, stopped breathing, and turned blue.  Because we live only two miles from the nearest emergency room, I grabbed him and drove like a mad woman.  It took the doctors an hour to revive him.  He had many more seizures after that.  It didn't take much; even a 100* temperature was enough to set off an all-night-long series of 30 or 40 smaller seizures.  It was exhausting.  He was eventually diagnosed with atypical febrile seizures.  The neurologist suggested medication, but Brian and I, though we didn't really have a concrete reason, felt in our hearts that was the wrong choice.  So we kept searching for answers.  We quickly learned his patterns and discovered by trial and error that if, at the first hint of a rise in temperature, we started feeding him smoothies containing a couple of tablespoons of coconut oil and protein powder with the fruit, he would not seize as much.  By the summer of 2013, seizures were rare.

With the tapering off of the seizures came abdominal pain, aggressive and confrontational behavior, and the whining.  At first we thought the attitude changes were normal for his age and we worked with him behaviorally.  As he got older, though, the attitude did not change.  He resisted our authority, picked fights intentionally with his brothers, and physically provoked the dogs. And always, many times per day, there were the complaints of abdominal pain.  We carefully monitored his food intake and watched for patterns.  We found none.  Nothing seemed to make it better or worse.  There was no discernible pattern to the time of day.  He complained first thing in the morning, during meals, after meals, and between meals.  The digestive enzymes we gave with every meal and the probiotics did not help.  His stools appeared normal and regular.  He did not complain of nausea.  There was no evidence of blood in the stool.

 By January of 2014 he weighed only 35 pounds, which was below the first percentile for his age. His skin was a sickly greenish color. He spent most of every day lying on the couch, too weak to play.  At night we carried him to his bed, where he usually fell asleep immediately.  He had never been a good sleeper, but now he tossed and turned and cried in his sleep.  He even got out of bed and came to us crying, but was not awake enough to communicate his needs.  He would cry for hours every night, not really awake but unable to settle back to a sound sleep either. And always, there was the abdominal pain.  Both he and I were exhausted. We took him to a pediatrician, who recommended a prescription acid reducer.  We saw many specialists, none of whom had any answers for us. Many times we were told that Josiah was not a good fit for their practice. 

A "hopeful" Path

In desperation, I shared our situation with the Myo-Functinal Therapist at Fetzik Dentistry. Following our consultation, we finally saw our first ray of hope. Since we were already established patients there, we were familiar with the level of care (personal, involved and ‘whole body’) they provide. I just had no idea that a dentist would help us find our answers. 

 She suggested that we see Sam Queen at Designed 2 Win, a biochemist. As it turns out, he had also ‘won’ his own life threatening battle with a significant mercury exposure while working in a medical lab in his younger days.  We found that he was taking a leave of absence with the intent to retire!  So Michale suggested Jennifer Kaumeyer, ND at The Riordan Clinic here in Wichita, Kansas.  Dr. Kaumeyer did a battery of tests which showed that his pancreas was not producing insulin, though his blood sugar was low.  She ordered a genetic panel which showed that he was missing the gene which makes the body create glutathione, the molecule which the liver uses to detoxify the blood. He also had several genes which are responsible for other detoxification processes which were “turned off.”  Now we knew the cause of his seizures and his steady decline.  His body was becoming more and more toxic.  He was dying.  But here we saw the hand of the Lord protecting Jo.  We were horrified, yet grateful, to realize that the cyp450 gene which was turned off was the same gene which is responsible for clearing from the body the seizure medications we had refused!   Had we agreed to that treatment, our baby would have been dead within a short time and no one would have known why.

 Dr. K. recommended supplementing glutathione, which we did.  JoJo improved drastically, but only for about 6 weeks.  Then he began to decline again.  In desperation, I put together a huge packet of all of JoJo's lab work, his history, and everything else I could think of which might be relevant.  Then I wrote a letter, pleading without shame as only a terrified mother can, for Sam to come out of retirement and take JoJo's case.  God intervened and Sam agreed.

Good News, Bad News, Good News

He spent hours poring over lab tests and the mountains of paperwork, then carefully explained to us just how sick our little boy was.  Because of his severely limited ability to clear toxins, particularly organic solvents, pesticides, and heavy metals, his system was extremely, dangerously acidic.  The toxins were affecting him neurologically, causing the seizures and behavioral problems, and they were affecting his organs, causing them to shut down.  His kidneys, liver, and pancreas were struggling.  He was barely producing insulin, but was also unable to keep his blood sugar levels high enough.  His pancreas was not producing enough of the chemicals necessary to regulate his pH.  His bilirubin level was the lowest Sam had ever seen.  He had high levels of mercury in his system. His immune system was struggling as well, leaving both viral and bacterial infections festering at low levels. 

 Believing that the body was created by God to not only survive but to thrive, we began an intensive program of supplements aimed at supporting his body in the healing process.  His diet was carefully planned.  Josiah was so very courageous, swallowing whatever was asked of him no matter how terrible it tasted.  Progress was slow and as exhausted as I was, I was easily discouraged.  But Sam was always available, encouraging us and even making himself available on his days off to help us through health crises.  And gradually JoJo began to improve.  He started sleeping more and better.  His energy level improved, allowing him to play for longer periods without lying down on the couch.  He became more cooperative and obedient and less aggressive.  After six weeks, his muscle tone and skin color had improved, and his eyes appeared brighter.  He smiled more and was more affectionate.  He (and, therefore, all of us) began sleeping better.  There were fewer night wakings, almost no incoherent crying sessions, and his sleep was much more peaceful.

After about 9 weeks, Sam ordered another set of blood tests.  These showed that his kidneys and liver had returned to normal function, and his bilirubin level had risen!  We were ecstatic!  However, his pancreas was still struggling.  His insulin level was even lower, and his pH, which we tested daily, was erratic and usually low.  Most days we had to chemically correct it.  Sam adjusted his supplements and encouraged us to keep up the good work.  

Leveling Off and the Road to Stable

At this point Sam suggested that we get what he called “body work” for Jo to release the strain and trauma from his connective tissue, or "fascia", that his high toxicity had caused.
​The  Myo-Functinal Therapistat Fetzik Dentistry was able to help perform that role since his issues were related to his sleep / airway. Craniosacral Fascial Technique was done for several sessions over the period of several weeks. She also gave Jojo things to do at home to help with his residual abdominal pain. His pain levels began to decrease over these sessions. 

Since Jojo’s pain was not 100% alleviated, but so much better, I decided to continue looking for answers in order to get him completely pain free. The residual discomfort was most likely related to nerve damage and nerve / tissue memory from the prolonged impulses over the course of his life. The healing of the nerve memory 'scar' I felt was possible and within reach. 

 We use Young Living essential oils to support our family's general health.   As I was praying about what I should order one month, I felt the strong sense that I should include Sacred Frankincense. When the order arrived, I didn't know what I was to use it for, so I set it aside.  A few days later, I was praying over Jo and felt that the Sacred Frankincense was for him.  That night I rubbed a couple of drops over his pancreas and put him to bed.  The next morning, his pH was high normal!  I continued to use the Frankincense on him morning and evening and his pH has remained within normal range and stable!  I have not had to chemically correct it once since that day. JoJo stopped complaining of abdominal pain – a huge blessing!  On the odd occasion that he does mention some pain, I rub another drop of Sacred Frankincense over his pancreas and he feels better.  At Sam's advice, we began challenging his pancreas with increasingly complex carbohydrates and he handled them well!  This suggested that he was producing insulin in larger quantities.

Almost Home

We drew a third round of blood work, and were delighted to find that his improvement was dramatic.  His acid stress level had decreased from off the charts to minimal.  The majority of the environmental toxins which had accumulated to cause so many neural symptoms such as seizures and behavioral abnormalities had been mostly cleared from his system.  His risk for diabetes was now zero and his pancreas was producing low normal quantities of insulin! Further, there was an enormous jump in alkaline phosphatase, which suggests that his body is poised for growth.

Today, JoJo seems almost completely healed.  His little body is rounder and softer where there once were sharp corners and edges.  His skin has a healthy, pinkish glow.  He smiles often, is hilariously funny, and showers us with affection.  We are very careful to control as much as is possible what toxins he is exposed to, for his body can only handle so much.  We eat exclusively organic food, and use only Norwex and essential oils for cleaning.  Our eyes have been opened to all the things we use daily without thinking about.  We have had to increase our vigilance in protecting him.  But this is a small price to pay to see the joy on his face as he plays with his brothers!  We are so grateful to God for sparing our precious son.  We are humbly aware that not all parents receive such a blessing, and we praise God Almighty for His great gift.

Update August 6, 2015

 Jojo was able to meet Sam Queen, the man who came out of retirement, and was part of the team of professionals who cared enough to “save his life”. Thank you to the team of caring people who helped find a way for Jojo. 


Sincerely, 
Julie

Thoughts from Dr. Steve

Helping a patient find their own path to healing and "being" in this amazing world is the highest calling a health care professional can be involved with. Speaking as a Dr., sometimes we are that person, sometimes we are not. Many times we are catalysts to aid the person in making the connection for the next step in healing. 

However it all works, it's all good. Please find your "people" and keep looking for answers. 

Dr. Steve

References

Jennifer Kaumeyer, ND
https://riordanclinic.org
Wichita, Kansas

Sam Queen
http://www.designed2win.com