SUCCESS STORIES

Genetic Syndromes

About the Client

Name:

Connor

Age at Intake:

6

Diagnoses:

Connor's Story

Connor’s family came to Jacob’s Ladder feeling desperate and alone, with no options for appropriate care for their son. Connor could not walk, eat his meals by mouth, or communicate. After his experience at Jacob’s Ladder, Connor experienced significant changes in these areas, even performing above grade level in spelling. This is Connor’s story.

 

Connor experienced significant challenges from birth related to his incredibly rare genetic condition. For the first three years of his life, he had up to 100 seizures per day and was hospitalized frequently due to severe complications. At 18 months old, Connor stopped eating by mouth and was fed via g-tube aside from occasional bites of purees. Connor experienced severe physiological challenges, including gastrointestinal pain leading to emotional dysregulation, paired with continued seizures. Connor’s system was so sensitive that even having his diaper changed could trigger seizure activity. 

 

Connor’s family lived in California, and when they learned of Jacob’s Ladder, Connor and his mother moved to Georgia. The move allowed Connor to participate in intensive on-campus enrollment. When we met Connor, he was non-vocal and had no effective means of communication. Connor could not sit independently, crawl, or walk. He showed challenges with pre-academic concepts and had severe challenges using his right hand to grasp and release items. Connor was so sensitive to touch that he refused touch from his mother and showed very little affection. He was also sensitive and avoidant to completing activities of daily living, so much so that his parents had to cut his hair while he was asleep. 

 

Connor’s family knew he was full of potential, but the treatment options in their area were minimal. Connor enrolled in intensive on-campus programming for approximately two years then continued enrollment in the Jacob’s Ladder Community of Care program from their home in California. Connor made tremendous gains during this time through his individualized therapeutic plan facilitated through the Interpersonal Whole-Brain Model of Care® (IWBMC™). By 2017, Connor had eaten all his food by mouth, his seizures had decreased tremendously, he had started communicating with picture cards, and his mother described him as an “affectionate child who loves touch.” In 2022, at 12 years old, Connor continued to progress and could walk with only hand-held support, communicate independently by typing, and work at an eighth-grade academic level for spelling.

Challenges Before Enrollment

Successes After Enrollment

Incoming Evaluation Results

During Connor’s initial evaluation, he could not sit, crawl, walk, or speak. His system was so dysregulated that he was aggravated by touch despite being wholly reliant on support for all mobility and feeding needs. Connor could not consume meals by mouth, and all his nutrition was given by a G-tube placed in his stomach. Connor was very sensitive to lying on his stomach, inhibiting the appropriate development of the typical gross motor milestones, including rolling and crawling. 

 

Connor showed global hypotonia, with extreme hypermobility at his ankles and hips. He could not keep his legs extended and in a neutral position for more than a few seconds at a time and had minimal organized movement. Connor could be propped in a seated position but could not sustain it for a full minute. He used his left hand for a basic grasp of items, but he rarely engaged his right arm and could not pick up or drop items from that side. 

 

Connor had no effective means of communication besides screaming, crying, and whining. This challenge created great frustration, as he could not communicate his wants or needs in a way others could understand. Connor had limited means of showing what he knew and could only identify a handful of pictures out of two choices. He frequently engaged in visual sensory play, such as waving items by his face and staring off. Further, he experienced significant visual challenges and could not use both eyes together consistently, often reverting to one or both eyes crossing when he tried to fixate on an item.

Results at Program Completion

Connor’s family moved to Georgia to enroll him in full-time intensive programming for six hours per day. Connor participated in this program for approximately one year before transitioning to full-time remote services through our Community of Care (CoC) program. During this time, Connor flourished in every way, excelling beyond the grim prognosis physicians had initially given him. 

 

Connor completed a Sensorimotor Intensive program, as his central nervous system required much stimulation to promote organization and regulation. His program alternated between input and output activities, including visual, early reflex, gross motor, tactile, vestibular, and cognitive programming. 

 

After completing the intensive work for approximately 18 months, he had progressed by leaps and bounds. Connor ate all his meals orally, sat independently, and used his right hand for various tasks, including transferring items between hands. Connor had gained the motor control to type for communication, and his academics improved to the point of working on sight word development. His sensory system had regulated so much that his mother described him as affectionate and loving touch, a tremendous change from his previous avoidance of the stimulation. 

 

As Connor changed to completing his programming remotely through the Community of Care program, his progress continued. At the time of his transition, he communicated with short phrases by typing, completed academic testing with spelling scores at an eighth-grade level, and consistently engaged with others. Connor’s seizures decreased to just a couple per day, and his system was much more regulated, allowing him to be an active participant in his day. Most notably, Connor’s motor control, strength, and tonicity improved so significantly that he walked with just hand-held support for stability.

“Connor, a sweet child locked in his uncooperative body with little means to engage and communicate, transformed into a boy who was walking, typing, and making academic gains. Despite the genetic nature of his condition, when given the appropriate input and stimulation, Connor flourished, and he and his family’s lives were transformed.”

These qEEG images show the electrical activity occurring within the brain. Areas with insufficient activity are noted by cool colors (blue and teal), whereas areas with too much activity are indicated by warm colors (lime green, yellow, red, and orange). The blank spots or white colors indicate any areas with activity occurring within the normal range. All data is collected from raw EEG data and is compared to a normative database based on the client’s age, gender, and handedness.

At Connor’s initial evaluation, significant dysregulation was noted in all frequencies (columns) and measures (rows). Most severe were the deficits in alpha activity, which were widespread throughout the brain, indicating insufficient resources for the brain to access, take in, and process information adequately. Further, within the Coherence measure, each frequency shows significant excessive and locked activity, noted by the abundance of red lines throughout the brain. Despite Connor’s diagnosis of a rare genetic condition, the images show a marked improvement in just 18 months, reflecting improvement in overall health and stability in the brain. As each area on the brain map improved, especially the global deficits in alpha, Connor’s functional improvement became evident as, functionally, his motor, communication, cognitive, and sensory processing skills improved.

Top 10 Hypo-Coherence Connections Comparison

6/15/2015 & 11/14/2017

Channel Frequency 6/15/15
Z-Score
11/14/17
Z-Score
Change
Toward
Normative
% Change
Cerebellum 6 - Left to Cerebellum 8 - Left Beta 3 -12.17 1.00 11.17 -91.78%
Cerebellum 6 - Left to Cerebellum 8 - Left High Beta 2 -10.66 -0.08 10.58 -99.25%
Cerebral Crus 1 - Left Brain Stem - Midbrain to Cerebellum 7b - Left High Beta 2 -10.11 -0.05 10.07 -99.60%

Within the AHAVA platform, for each evaluation, we generate a report of the most abnormal connectivity patterns in the brain, including the areas that are overly connected and those that are lacking in communication. For Connor, some of these scores were significantly deviant at his initial evaluation, more than ten standard deviations from the mean. A typical or average score would have a z-score between 0.00 – 1.60, but Connor’s were as severe as 12 deviations from zero, an incredibly rare and severe deficit. Functionally, these brain areas correlate to motor control and need to operate efficiently for all higher-level functioning to occur. After approximately 18 months of intensive programming, these severe scores improved to fall within the normative range, showing 91-99% improvement, and functional improvements seen by his providers and family mirrored the amount of progress shown in the data reports. 

Listen to how Jacob's Ladder helped Connor.

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