SSP Associate: Rosie Mann, RN and parent
Name of Organization: Forged in Fire
Client and age: NM age 10 years 7 1/2 months
Clinical history before SSP
NM was born to a 17-year-old single mother that had a history of her own foster care placement, substance abuse, anger issues, bipolar disorder, and borderline intellectual disability. Father unknown. Mother was homeless and in and out of several living situations after NM’s birth.
At 10 months of age, NM was taken by ambulance to the hospital because he was “acting funny.” Upon admission it was found that he had an intracranial bleed and brain swelling. He underwent emergent craniectomy to prevent herniation of the brain stem. Further assessment revealed brain injuries at various stages of resolution, old cervical and rib fractures, and his face was covered in bruises from ear to ear in various stages of resolution.
NM was placed in foster care directly following his 3-month hospitalization. Birth mother was identified as the perpetrator of the abuse. Twice monthly visits with the birth mother continued for 3 years during which NM screamed before, during, and after visits.
From the time he came home at 13 months of age, NM did not sleep. He dozed for short periods but startled awake easily. This went on for years. He screamed for hours at a time and could not be soothed. He could not sit at the table to eat, he bounced in his chair or ran around the table. He threw food and dishes, hung from towel bars in the bathrooms and ripped them from the walls, and climbed and jumped off furniture. He hit people and pulled hair. He ran away at every opportunity. He lived in perpetual fight and flight.
Early intervention provided physical therapy, occupational therapy, speech therapy, special instruction, and behavioral therapy. All of these therapies resulted in minimal gains that were not sustained. NM also participated in private physical, occupational, and speech therapy with the same minimal and unsustainable progress.
NM experienced a complete dissociative episode at the age of 2. He was completely unresponsive for about 24 hours, not responding to blood work, CAT scans, and multiple medical exams. He remained lethargic for about 4 days. His older sister described him as looking “like he wants to die.” Multiple medical professionals were involved before and after the episode including pediatrician, developmental pediatrician, physiatrist, neurologist, neurosurgeon. A gastroenterologist was consulted when he was diagnosed with failure to thrive. The pediatrician said he needed the neurologist because she could not help. The neurologist said he was sick and needed a pediatrician because he could not help. The developmental pediatrician blamed the parenting style for the behaviors and recommended a return to the neurologist for evaluation of subclinical seizures. The neurologist prescribed Keppra to address possible subclinical seizures. The neurosurgeon indicate there was no shunt malfunction and he could not help. The gastroenterologist did a reflux workup and prescribed supplemental formula. The work up showed minimal reflux and the formula did not improve the failure to thrive.
Play therapy was attempted. The therapist indicated that she could not work with him due to the behaviors and lack of ability to participate. Cognitive behavioral therapy was attempted where NM was restrained by the therapist. Therapy was discontinued.
Rehabilitation therapies continued and when NM was 3 years old he began to see an integrative psychotherapist. This is the first time ANY provider saw the impact of the complex trauma. She began to work with mom on honoring the trauma and understanding the need to release the trapped energy. The therapist worked on energy meridians and neuro-emotional techniques. She also guided the family through attachment based interventions. NM began to show some minor but sustained improvements in impulsivity and aggression. His weight stabilized.
At 4 years of age, NM underwent a psychological evaluation that confirmed the complex trauma disorder. The recommendation was for 40 hours per week of behavioral support with a TSS. Mobile therapy was not recommended due to the severity of his behaviors. He was also enrolled in preschool and the physical, occupational, and speech therapies continued. He was started on resperidone for the aggressive and impulsive behaviors and Prozac for anxiety. One provider also prescribed Inderal, and Geodon for NM at 4 years of age and stated, “He will end up in an institution.” After discussion with the neurologist, the Geodon was never given. Another provider acknowledged that NM had gone through traumatic experiences early in life, however, the issue was the traumatic brain injury and the complex trauma was irrelevant to the treatment planning.
Actual complex partial seizures documented on EEG began and NM was prescribed Lamictal and Depakote. The Keppra, resperidone, and Inderal were all discontinued.
Within 2 months of starting preschool, NM was expelled for behavioral issues. He was enrolled in a segregated preschool with the continued behavioral support. The preschool continued with PT, OT, ST and coordination with the behavior support team. They attempted to address his needs with visual supports, physical supports, sensory diet, and behavior modification strategies. Clonidine was ordered for ongoing sleep issues. Within 3 months of starting the second preschool, NM was engaging in a behavior of putting his hand down his throat and causing himself to vomit. He would cause himself to vomit every day, sometimes several times a day at home and at school. One day at school, he caused himself to vomit, became unresponsive, and so began the second complete dissociative episode of his short life. This episode lasted about 3 days.
After much discussion with the integrative therapist, and new pediatric psychiatrist, it was determined that mom would relinquish all out of home responsibilities and focus on healing NM. All rehabilitative and behavioral therapies were discontinued and NM was withdrawn from preschool. Medications included the Prozac, Depakote, Lamictal, and Clonidine. Seroquel was added during this time. Inpatient psychiatric placement was discussed, however, attachment issues at this point were as much of a problem as were the other behaviors. Mom understood something else needed to be done and began intensive research into complex trauma. Mom began to discuss with providers the neurosequential model of therapeutics and polyvagal theory. Providers were dismissive and focused on the traumatic brain injury as the area of concern.
Mom implemented a protocol of rhythmic and repetitive activities including rocking, jumping on a trampoline, and swinging. Mom used a slow, clam, prosodic tone of voice in order to co- regulate. Music therapy was initiated. NM was supported in drumming and piano playing. Drawing and painting were a big part of the day whenever NM was regulated enough to participate. NM experienced shoulder and neck massages, along with foot and leg massages daily. A homeopathic physician was consulted and several homeopathic remedies were prescribed. These homeopathic remedies showed no identifiable improvements and were discontinued.
At home aggressive, impulsive behaviors and eloping continued though thankfully to a lesser degree. NM struggled to manage his behaviors far more when out in the community. He began engaging in fecal smearing and volitional urination. He would smear himself and his room with feces and urinate different places in the house. He would pull down his pants and dig in his rectum at times when he was agitated and frustrated.
Mom wanted more ways to activate the parasympathetic nervous system and researched yoga, acupressure points around the ear, and primitive reflex integration exercises. All of these neurologically down regulating interventions showed sustainable improvements. Reflex integration caused increased in seizure activity and had to be slowed down significantly. At 5 years of age discussions began with the school district to plan for kindergarten. NM underwent a neuropsychological evaluation to assist with planning. The neuropsychologist indicated NM’s primary need was a sense of safety.
Following the neuropsychological evaluation and several very difficult testing sessions by the school, the family felt that the school could not provide an environment with enough “felt safety” that would allow NM to be successful. The decision was made to homeschool.
NM was developing enough awareness of his bodily activation that he would ask to go to the swing. He was swinging for up to 2 hours at a time several times a day in order to be able to manage his arousal level. He was indicating more clearly when he wanted to eat or drink. His sleep was improving with the addition of the Seroquel (Clonidine had shown minimal to no improvement in sleep.) He was developing a sense of guilt and would want to make amends after engaging in disruptive behaviors. Fecal smearing and volitional urination decreased.
NM’s ability to manage his arousal increased to the point where the Prozac and Clonidine were discontinued. At 10 years of age and following 3 1/2 years of homeschooling, NM was finally participating in all home school activities daily. These activities included drawing, letters and phonics, read aloud, exercises, computer, and piano. He was beginning to comprehend the schedule and would anticipate the next activity. The music therapist that had been seeing him for 4 years was noticing slow and sustained progress in regulation and participation.
NM was still impulsive, showed intense jealousy when others received attention, and language and fine motor skills had basically plateaued. Community outings remained a challenge with consistent increases in impulsivity and aggression while out of the home. Weekly church attendance was a real challenge due to the impulsivity, aggression, inability to remain in one seat, and loud and repeated shouting. Mom heard about the SSP at a conference on primitive reflex integration.
Current Diagnoses: traumatic brain injury right hemiparesis status post VP shunt placement severe aggressive behavior post-traumatic stress disorder, preverbal complex trauma reactive attachment disorder partial complex seizure disorder dissociative disorder related to complex preverbal trauma
Implementation of the SSP
The SSP was planned with goals of:
- decreasing impulsive and aggressive behaviors, especially when out in the community and around potty training.
- increase attention span
- increase spontaneous language, length of utterances, and articulation
- develop reciprocal communication
- increase fine motor skills including learning to draw horizontal and vertical lines versus just scribbling, and targeting of drawing
- increased willingness to try novel activities and tolerate frustration with tasks without aggression
- decrease perseveration on food, especially peanut butter
- improved and more consistent sleep including falling asleep and staying asleep.
SSP would be administered with close supervision due to history of intractable seizures and extent of past trauma. Administration would occur at home which is the place of greatest safety.
Administration began with NM tolerating about 2 to three minutes with one or two breaks brief breaks where he removed the headphones, but then allowed them to be placed again. After 3 days of this introduction using just day 1, NM began to tolerate longer sessions.
Once NM was tolerating 10 to 15 minutes at a time official implementation began on November 14, 2018. Sessions were administered two or three sessions per day for a total of 30 minutes per day. NM was calm and quiet during implementation and would remove the headphones about one time per session allowing them to be placed again. When he would remove the headphones and no longer allow them to be placed again or remove them and walk away the session would end.
- Day 1: total 30 minutes (1a) in 3 sessions;
- Day 2: total 30 minutes (1b) in 3 sessions;
- Day 3: total 30 minutes (2a) in 2 sessions NM became hyper with constant running and shouting. He was unable to tolerate administration so SSP was on hold for one day;
- Day 4: total 30 minutes (2b) in 2 sessions NM experienced a seizure so SSP was on hold for one day;
- Day 5: total 30 minutes (3a) in 2 sessions Day 6 total 30 minutes (3b) in 2 sessions.
After day 6 NM was once again very hyper and unable to tolerate administration. This hyperarousal lasted several weeks so this round of administration was discontinued.
Music therapy continued at home once weekly prior to, during, and after this round of SSP. Daily walking, jumping, and rocking continued as before as ways to down regulate the nervous system. NM engaged in exercises to integrate tendon guard reflex one time daily. Tendon guard reflex is associated with stress responses. Dose of Seroquel was reduced from 75 mg twice daily to 50 mg twice daily in October prior to SSP administration. Seroquel possibly decreases seizure threshold so the dose was adjusted to facilitate management of seizures. In December following SSP administration, Lamictal dose was increased from 50 mg in am and 75 mg in pm to 75 mg twice daily to address seizure activity. Neurologist was informed of SSP administration and felt that it could have a possible effect of decreasing seizure activity.
Ongoing plan includes repeating the SSP when seizure activity is managed. See below.
Response to SSP
Initial responses during and immediately after were as described.
In mid-December there was a shift in NM’s functioning. He was calmer and more focused. The most drastic effect at this time was that NM no longer fought going to the bathroom. He willingly went to the bathroom when prompted AND he remained dry throughout the day. This was a goal for many years but only since the SSP has it been achieved.
He no longer was perseverating on peanut butter. He accepted that he had to wait and at times even ate meals without any peanut butter.
He was now imitating novel two and three-word phrases. Articulation improved with spontaneous language where we were now hearing ending sounds on words.
He was able to focus on tasks for longer periods and was drawing with more precision. See drawings and videos. The first drawing, done in October prior to SSP, he is not crossing midline with his lines. The lines are long vertical strokes and the colors are separate. In the second drawing in December post SSP he is targeting the smaller letters with both red and blue, he is crossing midline with his lines, and the lines are shorter and more directed. The video clearly shows the difference in attention, focus, and regulation pre and post SSP.
NM was observed piling pillows and rocking on them. He was covering his head with a blanket and sitting quietly under the “tent.” When given access to a large ball, he would independently rock on the ball. When he wanted food and was asked to wait, he was observed going to the refrigerator, getting some leftovers, getting a dish and putting some of the leftovers in, and placing the remaining leftovers back in the refrigerator. These behaviors appeared to be appropriate attempts at decreasing arousal. In the past he would climb on furniture, run, and shout as ways of managing arousal. Prior to the SSP he would not independently initiate appropriate self-soothing activities such as those described.
He attended church weekly with his family. Since the SSP he was able to sit in a seat and at times on the floor without running off. He went from approximately 3-5 aggressive behaviors during a one hour service to zero aggressive behaviors. He continued to shout out a few times but even the priest commented on how much quieter he was during the service.
On January 2 NM began having multiple seizures daily which had not happened in months. Blood work on January 5 indicated an elevated Depakote level. In the past, high Depakote level occurred with increased seizures and the dose was reduced with successful reduction in seizures. Contact will be made with the neurologist on Monday January 7, 2018. Discussion will occur regarding repeating SSP after seizures are once again under control.
Discussion has occurred in the Facebook group about possible need for reduction in medication following SSP. Medication management will be closely supervised due to the possible interaction with SSP and the complexity of NM’s medications.