Dx West Syndrome: Lucas Success Story
Can Lucas Have A Second Chance?
Lucas before he started on the program
Lucas was diagnosed with infantile spasms, a chromosomal abnormality, and developmental delay in the first few months of his life. At two years of age, he was blind, deaf, paralyzed, speechless, and he could not use his hands. Lucas’s parents attended the What To Do About Your Brain-Injured Child Course and began working intensively with him at home.
Mother tells his story
“Lucas was born by c-section at 37 weeks gestation. He developed normally until 4 months of age then he had strange movements. This alerted us to visit the neurologist and get the relevant examinations. That’s when he was diagnosed with West Syndrome and we understood that those strange movements were seizures. He had no head control, muscular hypotonia, and he could not visually focus on objects or people and Lucas had an in appropriate response to threatening sounds.”
Little baby Lucas was not seeing, not hearing and not moving anywhere
“After completing all the medical examinations in our home country of Colombia we sought out a better diagnosis and treatment plan, and neurology assessment at John Hopkins Hospital. Their plan was to medicate our son to control his seizures and keep him in bed. We weren’t happy with this treatment plan and started researching different treatment plans online for our son.”
“Nine months later, we arrived with the help of God at The Institutes for the Achievement of Human Potential, to attend the What To Do About Your Brain-injured Child course and to get to know a little more about The Institutes.”
“We learned a lot of things among them how to create a neurological profile for Lucas and this answered many questions that we had about creating a treatment plan that could offer him a better quality of life.”
-“At that time his vision was very poor he had only a delayed light reflex, no outline, and no detail at all he was functionally blind. His hearing was also very poor he had only an inconsistent startle reflex he had no response to threatening sounds, or to meaningful sounds or words. In tactility he had low level sensation problems.”_
Lucas was blind when he started the program
“In mobility he could not crawl, or creep, or walk or move at all. He was able to cry but not to make meaningful sounds. He had no manual competence. In fact, in this area he was below a newborn baby.”
“He was heavily medicated.”
“After attending this course, our lives changed completely. Our food changed completely and we began an intensive physical program. We stopped traveling three times a week to do conventional therapies and devoted ourselves to working at home in preparation for our first evaluation in Philadelphia.”
His sensory stimulation program included carefully calibrated visual stimulation
At his initial evaluation his chronological age was 18 months but his neurological age was only 4 months.
Big Changes: Seeing, Hearing, Reading and Understanding
At his first visit To the Institutes at age 30 months there were very significant changes already. He could consistently see detail - he was no longer blind. Mother had introduced a reading program she had taught him 750 words, 750 couplets and 40 books. He loved his reading program.
And in between the joys of moving the joys of reading. Lucas loved his books right from the start.
At his evaluation he could identify colors, musical instruments and he easily followed two step instructions and even answered indirect questions. He was no longer deaf that was for certain. He was able to play games for the first time and he was dancing and singing - another first for him. He now had four words of speech and he could pick up objects for the first time.
The floor as a way of life
“Lucas stayed on the floor all the time on his belly which allowed him to be able to move forward for the first time. This provided the best opportunity to develop his brain using his mobility.”
The ideal environment
“We placed Lucas throughout the day on an inclined floor we did this with a high frequency and a short duration. His goal was to have a chance to move forward at least 60 times in the day.”
Lucas enjoys the ease of coming down the incline floor which allowed him to be able to move for the first time.
“When he achieved this goal, we moved from the incline floor to the flat floor. He gradually achieved his goal to reach a total of 22 meters of crawling a day. He eventually achieved the goal of 400 meters of crawling!”
Crawling without the need of the inclined floor but with his anti-roll device
“Once he could crawl he began to be able to roll but what he needed to do was to creep not roll. We used an anti-roll device and soon he was creeping. When he started to creep he worked to achieve 1.6 km of creeping daily”.
Gravity and Oxygen
He needed to have better balance and coordination so he could handle gravity perfectly. A program was designed to provide this kind of stimulation and opportunity. Oxygen is the primary food for the brain it was important to be sure he was always getting good oxygenation. He began on an oxygen enrichment program.
After walking under the overhead ladder he could stand up independently from the floor and he began walking about 500 meters a day.
He can read 8 or 9 year old level books and he understands at least at age level.
Rough, tough and ready to go
Today, at seven years of age, he walks a quarter-mile per day, and reads and understands above his age level. Lucas has not reached is goal, he still has a few mountains to climb, but the ones he has already conquered - blindness, deafness and immobility are huge, the next steps for him should be a lot more fun.
And his wonderful family will be right there by his side every step of the way. Mother’s advice for other mothers is simple yet profound:
“Believe in your child”