What happens if DHA-EE supplementation is stopped?

What happens when DHA-EE supplementation is stopped or DHA triglyceride is substituted in a child with Peroxisomal Biogenesis Disorder, Zellweger’s Syndrome?

Two children on DHA-EE had their treatment interrupted due to shipping complications and they were given a DHA triglyceride as a substitute until DHA-EE supplementation could be resumed.  One child, Millie, had her treatment stopped altogether while hospitalized.  Her parents tell her story.

Link to Matthew

Link to Maximus

Link to Millie

MillieMfirstMillieM on DHA-EEMillieAfter hospital (noDHA)

Millie’s history in photographs


DHA-EE, not DHA-TG satisfies the correction of a deficiency.

According to the guidelines set by the medical community’s definition of deficiency and the correction of its defect, supplementation of DHA-EE for the known deficiency of DHA in children with Peroxisomal Biogenesis Disorders, Zellweger’s Syndrome meets those guidelines, especially since a deficiency in DHA is one that causes such a high magnitude of physical and mental illness as defined by the Early Periodic Screening, Diagnosis and Treatment (EPSDT) program.  As recorded in his medical history, the use of DHA-EE in three instances during Matthew’s life satisfy the medical community’s definition of a deficiency and the correction of its defect, first in the month prior to receiving DHA-EE when he was on the DHA-TG, second when his DHA-EE dose was lowered to 100mg/day, and third when shipping complications prevented him from taking the DHA-EE for twenty-seven days and he again received the DHA-TG.  In the first and third of these events, reversal of the symptoms of deficiency was corrected by DHA-EE supplementation.  The lower dose of DHA-EE in the second event affected Matthew’s plasmalogen ratios (lower) and resulted in apnea seizures, which disappeared after 200 mg/day dose was resumed.


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