EPILOGUE - From CSB 2004 Update

From Jack and Jaquelyn:

We leave you with a few personal reflections and an invitation to a vision of healing.

Before life catapulted us into autism, we regularly practiced meditation, visualization and energetic approaches to healing in council circles. In the early days of our ASD journey Jaquelyn felt that the children were so ill that they needed biomedical treatment first in order to be receptive to the effects of these more subtle healing techniques. Jack felt that all treatments offered a chance for parents, siblings, grandparents and even healthcare providers to relate more consciously and creatively to these children. Before long our teacher Chelsey made it clear in her inimitable way that such debates over emphasis were swamps on the journey to the promised land of her emergence. Finally, we surrendered to the obvious reality that biomedical and relational healing approaches were equally essential and inseparable. It was no surprise to hear that recent research has suggested that intensive, consciously structured interaction with ASD children affects their brain chemistry and, in particular, stimulates dendritic growth.

We have come to see that biomedicine does not stop at the boundaries of emotion, thought or the mysteries of the human spirit. Studies of the efficacy of different approaches to healing are confirming the traditional wisdom that "love heals" --that it matters, for example, not only what we do with an ASD child but also what happens to us as we do it. What are we learning about ourselves and relationship as we try to get the supplements down? What uncharted qualities of Spirit do we touch trying to maintain our energy one more hour, one more day, one more lifetime as healers and guardians of our young teachers? Many of us have come to see that becoming more conscious and creative in the ways we relate to our special children makes a difference in their healing. The ripple effect from this expanding awareness into all of our relationships can be significant. Chelsey has helped us to see that her healing is a seamless process of medically informed, courageous relating that affects every part of her life as well as ours.

The complexity of healing just one autistic child is as mysterious as the entire Universe, while the onslaught of the worldwide ASD epidemic is overwhelming to anyone who takes a deep look. Despite the progress made in current biomedical and educational/relational treatment programs, the harsh realities suggest that we need to find a differently empowered level of healing if we are to overcome the P 302 astounding inertia in our present political/medical/pharmaceutical complex. We need to expand our capability to utilize the power of loving relationship in more conscious and creative ways. From what we have learned from Chelsey and many other children, we believe an expanded level of healing can be created by concentrated imaging of a future in which all ASD children live a fulfilling relational life. Our unifying statement is: "We want all our children to be able to taste the full spectrum of relationship -intimacy, friendship, loyalty, devotion and eroticism, as well as disappointment, confusion, loss and grief." The visualization of such relationships has to be done uniquely and co-creatively for each child at a level so magnetic that the future story is literally drawn into manifestation--and we have to "know" the child so well that a narrative unfolds authentically as if they were full participants.

Relieving Chelsey of her dysfunctional gut, confused immune system and distraught neurological environment while educationally mainstreaming her and helping her to communicate affectively has for us now come under the over-arching, powerful image of her ability to relate to at least one contemporary outside of her family in profoundly loving, unbounded ways. We have become fully engaged in an exploration of how a truly conscious loving relationship can create an energetic "field" in which both participants experience greater wholeness throughout their mind/body continuum. We invite you to join in this experiment to consciously create a relationally healing future for your child. The love which parents and others in this growing community of healers brings into our children's lives is what makes such a real "future healing story" possible. We need to support each other in carrying out an expanded visionary experiment. We need to deepen our understanding of how to work together-possibly using various forms of visualization, meditation and council-- to use the enormous power of shared intention to create a unified healing field for all of us. We need the synergy of the clan and a variety of healing practices to help each family reach the inspired level of intentional imagination required.

We invite you to envision a community of your own design that is safe enough for your child to risk the delights and dangers of loving deeply. Families may want to create ways to come together periodically to share their visions and empower them collectively. Hopefully these gatherings and practices will become a coherent force that will heal our children and create the cultural revolution their growing presence demands.

- March 2004

(To my CSB Listmates): I have a resounding NO to multilevel vials for methylcobalamin (MB12) from both Dr. Neubrander and Dr. Smith (PharmD) at Coastal Compounding. Dr. Neubrander has asked me to convey that he is also reverting back to his recommendation of twice weekly doses of 75mcg/Kg or 65mcg/Kg given every three days given subcutaneously (at a 30-45 degree angle) which he feels gives a depot slow-leaching time-release effect). After we raised the doses he noted an increase in side effects with daily doses. I have not noticed this as much as he, but he has about 200 patients on methylcobalamin with consistent reporting, many more than I. This will cut down the price from the daily injection protocol.

Some organisms that grow around in refrigerators are dangerous, and we do not want to be the facilitators of organism contamination. I learned that an unpreserved vial is only good for 24 hours after the septum has been pierced, and pharmacists are taught in pharmacy school that any unpreserved sterile pharmaceutical is to be discarded within 24 hours after septum has been pierced. Also, benzyl alcohol should be avoided when possible, as it is definitely contraindicated for neonates. Who knows how much the detoxification systems of these children have progressed?

As to parents getting a vial and making up the injections themselves: Parents generally are not trained in the aseptic technique of preparing pharmaceuticals for injection and definitely do not have a laminar flow hood to prepare the syringes in. It has been reported that several patients died last year when the sterile solution they were using became contaminated with Klebsiella (not in our population, thank heavens!).

To sum up, I do not feel if we go to the twice weekly dosing subcutaneously as Dr. Neubrander now suggests that the cost justifies taking any of these kinds of chances with the kids. This is a new therapy and we must be very careful that it is not derailed because of someone getting an infectious illness from the technique. I am suggesting that if you are seeing hyperactivity and increased stimming, cut down the frequency of the injections. It may very well be that enough has gone in after a period of daily injections that we can go down in frequency and up in dosage for the bigger kids, as I started everyone on the 1250mcg initially. Some parents on their own decided to go to less frequent doses when they noticed hyperactivity or insomnia - better than stopping altogether, as a few did. Your observation of your child is the best; some parents note a shift in cognition if their child misses one day; this child needs the daily dose for the time being. If going to 2 times a week (or every 3^rd day) does not make any difference (you still see the gains) then their system may be adequately saturated so that less frequent doses work just fine. I still am of the opinion that anything made up for injections without preservatives should be refrigerated, as most bugs do not grow as fast in the cold.

Again, I must apologize for the changes, this is a work in transition, and admittedly we are using our client populations for informal research, but so far, I've seen no harm and many good results. I certainly understand if anyone would rather sit out on the sidelines until all the kinks are worked out.

- Best wishes, Jaquelyn

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Vitamin A update : Advice on measles titers and Vitamin A

If a child has high measles titers and has gut problems, he/she might be considered for high Vitamin A treatment, particularly if regression occurred after the MMR and stomach problems still exist. I need to emphasize that this is new for me and DAN! and there are many things we don't know yet about the very high dose treatment. We do know some of our kids with this profile have ongoing measles infections in their guts as revealed by endoscopy with no other viable treatment other than supportive. And many of us agree that the very high doses for a short time do not cause any problems. Dr. Mary Megson questions these high doses but has recommended a serum retinol test every 2 months if we do go above the now recommended 5000 IU per day (which in my opinion is not nearly enough for our kids), and it would be great if parents could have their children get this before they start and then compare 2 months later. Even in very conservative Germany they give 300,000IU one day and 150,000IU the next when a child is exposed to or is getting measles. (Then they don't give any more for six months.) Gut inflammation as many if not most of our kids have seems to cause the Vitamin A to pour out, and one study (I don't remember where) showed 73% of our kids are deficient in Vitamin A. My preferred form is Klaire's Mycel A, 5000iu per drop. You need to make sure the Vitamin A if from fish does not contain mercury or D and if you are using CLO, don't go over the 5000IU because of the D; give the rest in another form that does not have D (or mercury, of course). Actually, some evidence is coming around that indicates our dosing of Vitamin D is deficient and fears of its toxicity may be greatly exaggerated similar to the prevailing notions about Vitamin A. Adequate routine testing for A toxicity is not reliable.
Clinical assessment is best; the most obvious sign of A toxicity is a scruffy rash around neck and shoulders.

Important Reminder

At any sign of headache, nausea, or vomiting stop all Vitamin A supplementation.