Breakthrough in Treatment of Cerebral Palsy & Other Neuromuscular Disorders

West Bloomfield, United States, 08/29/2012 / SubmitMyPR /

Eleven children diagnosed with neuromuscular issues ranging from severe hypotonia to athetoid cerebral palsy/dystonia are experiencing “dramatic improvement” thanks to a new protocol being advocated by the Preemie Growth Project.

HOW IT WAS DISCOVERED

Executive Director and Founder Ida Briggs reports the breakthrough treatment was initially discovered last year when a 9-month old severely hypotonic boy diagnosed with cerebral palsy by physicians at Children’s Hospital of Michigan in Detroit, Michigan went from twelve pounds to twenty-two in under ten weeks, and then took his first steps while using the Preemie Growth Project “preemie protocol”. This was followed earlier this year by a 9-year old girl, born at 26 weeks weighing 1 pound, 11 ounces, and diagnosed with spastic cerebral palsy, experiencing “dramatic improvement” in a matter of weeks as well; her hyperspastic hands are now completely normal, among other improvements.

“The intervention is inexpensive, easy to administer, and benign,” says Ms. Briggs. “Fortunately, we were able to recruit several parents to determine if the initial two children were random miracles, or if we had something repeatable.”

It appears to be repeatable, as the next nine children with similar symptoms all began to follow the same pattern of dramatic improvement first seen with Ms. Briggs premature babies: increased appetite, healthy weight gain, and in the cases of the children with cerebral palsy, increased strength, and decreased hyperspasticity.

HOW THE PROJECT BEGAN & THE SCIENCE BEHIND IT

The Preemie Growth Project began when Ida Briggs, Founder and Executive Director, found what she believed to be the reason for her own 32-week premature twins’ unprecedented “normal by four months actual/two months adjusted” growth rate. Despite being born two months early and in the 4-pound range, the two quickly put on healthy weight, and by six months old were in the top half of the growth charts for full-term babies. According to Ms. Briggs, they then proceeded to meet or beat all milestones as if they were born full term, and began walking at eleven months.

Ms. Briggs attributes this to early micronutrient supplementation she began when they were two months old, and credits a key passage she found in the “Textbook of Pediatric Gastroenterology and Nutrition,” edited by Dr. Stefano Guandalini, for the explanation of the protocol’s efficacy. The key passage, per Ms. Briggs, is on page 631:

“The infant born prematurely is at increased risk for developing trace mineral deficiencies. Premature birth is associated with low stores at birth, because accretion of trace minerals takes place during the last trimester of pregnancy.”

Ms. Briggs says the quote helped everything fall into place.

“Premature babies traditionally catch up between one and two years of age, which coincides with when babies begin to eat real food, which contains the micronutrients they didn’t get because they were born prematurely,” she explains. “All I had done was an early supplementation, and two months later, they were normal.”

Micronutrient supplementation has been used by neonatologists for well over a decade, but Ms. Briggs is confident she knows why the same dramatic results aren’t being seen in the NICU.

“They are only giving it INTRAVENOUSLY,” she explains. “The micronutrients have to be given ORALLY.”

As for the results the children in the Project are seeing, she says “the current theory with most neuromuscular issues, including cerebral palsy, is brain damage occurs first, and the neuromuscular issues are a result. Statistically, seventy percent of children diagnosed with cerebral palsy are born prematurely. From what we are seeing, it appears the micronutrient deficiency issues occur first, and the neuromuscular issues are a symptom. More importantly, when the deficiency is corrected, the hypotonic and hyperspastic symptoms begin to resolve.”

The changes have been dramatic, and in some cases, life altering.

CHILDREN SEEING BENEFIT

Five year old Colin West, diagnosed with Mild Cerebral Palsy, had hyperspasticity in his legs causing him to walk on his toes and be in pain when he was touched. Prior to his participation, his left ankle range of motion was measured at “-10” and his right at “-15”; after six weeks in the Project his mother, Omana West, was stunned to learn the range of motion for his left ankle was “normal”, while his right ankle was at “-10.”

Ms. West says, “this has changed my son's life. His physical strength, energy, movement, food intake, weight gain, and cognitive changes have significantly improved. We are very excited about this new little person. We have started to secure the home, as he is getting into trouble, and now moving faster than before. A very exciting change, for us and my son!”

Amy Simko’s five year old son Hayden was diagnosed with hypotonia and sensory processing disorder. He has been in physical therapy since he was three years old, and prior to his participation in the Preemie Growth Project protocol, was reporting a strength of “less than 3.5” on the standard 1-5 range Manual Muscle Test used by professionals where “5” is normal. After six weeks in the Project, he was measured at “greater than 4.5” and at eight weeks was formally released from therapy as he had achieved all appropriate goals. In real world terms, this meant he went from “requiring assistance climbing up and down a flight of stairs” to eight weeks later “climbing monkey bars and running down hills.”

Ms. Simko says, “Hayden has shown tremendous progress in a very short time in the areas of gross motor skills, fine motor skills, emotional maturity, focus and cognitive processing abilities. Our son's physical and occupational therapists are amazed at the sudden and drastic improvements in our son.”

Ms. Simko, like several other parents in the Project, has also reported improvement in her son’s sensory processing issues.

Melissa Jenkins, mother of seven year old Dakota, diagnosed with Athetoid Cerebral Palsy and Dystonia, is also enthusiastic. “Dakota gained three pounds in three weeks after having been on the supplement for a little over a month. This rate of weight gain is unparalleled for Dakota. He has never gained more than one to five pounds per YEAR previously. I have definitely noticed Dakota's legs grip stronger than they used to when we carry him to and from his chair. When we lift him (he is a quadriplegic) he squeezes our arms with his legs hard enough to bruise them. This didn't happen before!”

Ms. Jenkins is also able to report, “Dakota lifted his head from a prone and near prone position! He lifted it slightly from prone, and then after I propped him up on his elbows, he lifted it full up!”

Dr. Eileen Donovan, Medical Director at the Detroit Institute for Children in Detroit, Michigan, has also been monitoring several of her patients who are participating in the Project. “It's very exciting that the supplement shows so much promise to improve strength and function for children with a variety of conditions. There is minimal cost, virtually no side effects, and lots of potential for improvement. Although it is early in the game, every single patient of mine who has tried the supplement has shown improvement."

COST TO PARTICIPATE

As budget allows, the cost to parents who wish to participate in the Preemie Growth Project is zero for those who are willing to commit to a two month trial period and sharing information in bi-weekly reports published to the internet with identifying information redacted. Parents who are not willing or able to share can find easy to follow directions on the Preemie Growth Project website (www.preemiegrowthproject.org). If parents see no benefit to their children after two months, they are requested to report that as well.

“This investigation is still in its very early stages,” cautions Ms. Briggs. “Unfortunately, even information about who it isn’t working for will help us.”

PATTERN OF IMPROVEMENT & FACTORS AFFECTING SPEED OF RECOVERY

• Week 1-2: No real change, possible increase in "dirty diapers“
– (warning: watch for increase in diaper rash as a result)
• Week 2+: Noticeable increase in appetite, beginning of weight gain
• Week 4+: Increase in muscle strength, appearing to begin with head, neck and trunk, followed by arms/hands and legs
– with babies, walking began at "standard" time regardless of prematurity within 2-4 months

Factors affecting the speed of improvement appear to be gestational age at birth, weight at birth, mother’s nutritional status before and during pregnancy, age at which the intervention takes place, weight at which the intervention takes place, and other outstanding health factors.

ABOUT PREEMIE GROWTH PROJECT

Preemie Growth Project, Inc. is a Michigan non-profit corporation formed in October of 2009 with the mission of benefiting premature infants by studying the effect of non-prescription nutritional supplements on the growth and development of premature infants, and publicizing as broadly and effectively as possible the study’s findings. After recent breakthroughs appearing to demonstrate "dramatic improvement" for children with neuromuscular issues, including cerebral palsy, hypotonia, dystonia, and hyperspasticity, the mission has been expanded to include investigating the effects of micronutrient supplementation on any child with health issues related to micronutrient deficiency.

The group was started as a parent initiative and continues to rely on parents for input, observation and reporting.

The Preemie Growth Project is financed through contributions from private individuals and organization and foundation sponsors.

As of the date of this press release, the Preemie Growth Project is tracking 30 children at various stages of the Project.

For more information about the Preemie Growth Project, please visit us on the web at www.preemiegrowthproject.org or follow us on Facebook.