the Body Heals but the Heart Still Trembles: Emotional Dysregulation in Recovering PAH Children
This article was crafted with the help of The Paraclete Foundation, which contributes to this inquiry not through institutional doctrine, but through its founding intent: to bear witness to the unseen layers of illness and healing. Rooted in a commitment to deep listening and integrative perception, the Foundation offers a lens through which conditions like PAH can be understood not only as vascular disorders, but as invitations to re-inhabit the body's intelligence: its rhythms, fears, and capacities for re-patterning.
The articles in this series reflect clinical observations, research interpretation, and personal inquiry developed over years of integrative practice. It is offered for educational and reflective purposes only and should not be taken as medical advice or a substitute for personalised care from a qualified health professional.
The articles in this series reflect clinical observations, research interpretation, and personal inquiry developed over years of integrative practice. It is offered for educational and reflective purposes only and should not be taken as medical advice or a substitute for personalised care from a qualified health professional.
There’s a moment in the arc of healing when the world expects celebration but the body isn’t quite ready.
The medications are down. The lab markers are stabilising. The child who once sat out is now sprinting across the oval, breath stronger, skin flushed not with cyanosis but with effort. The pulse is steadier. The HTMA chart no longer screams of loss.
And yet, there is emotional tremor that looks like: lability; nights of crying; rage without reason; and clinginess after independence. This is the storm of a nervous system catching up to the biology beneath it.
This is not regression. This is a phase rarely (never?) named in clinical texts: the post-threat recalibration of the neurovisceral system. In a child with pulmonary arterial hypertension (PAH), emotional dysregulation during recovery is not a mistake or mystery. It is the nervous system's echo and the replay of what it stored while the body was in survival.
To understand this, we must look not only at what is improving: oxygenation, cardiac strain, mitochondrial output, but at what remains disrupted in the rhythm between body, brain, and meaning.
The Illusion of Linear Healing
In clinical practice, progress is often measured through what can be seen or charted: lower pulmonary pressures, reduced medication load, increased activity tolerance. On paper, this is recovery.
But children do not heal linearly. Their nervous systems are developmental fields, not mechanical engines. When the body begins to move out of a disease state, the brain must renegotiate everything it encoded during illness: fear, fatigue, breathlessness, restraint.
What looked like emotional stability during illness was often energetic collapse and a form of conservation. The brainstem quieted non-essential expression to preserve life. The limbic system was suppressed. The frontal cortex down-regulated ambition and exploration.
Many forms of serious or chronic illness will create a general response or adaption to stress. The body (in an adult, but perhaps especially, in a child) will have to un-adapt to recover fully. On a micro level, we have to undo the cell danger response.
Now, with metabolic repair underway, those systems begin to awaken. What appears as dysregulation may in fact be a delayed emergence.
The Mineral Map and the Emotional Tide
A child moving out of a survival state, like PAH, can undergo significant shifts in mineral balance. A well-conducted HTMA can reveal the quiet shifts beneath the visible recovery.
Take zinc and copper, two ions that sit at the fulcrum of emotional expression. As copper begins to detoxify, which is a common occurrence when oxidative stress abates, there is often a concurrent change in norepinephrine and dopamine levels. These neurotransmitters, long buffered by copper’s excess, now return to baseline. In that shift, the child may feel foggy, irritable, or overwhelmed.
Zinc, a mineral of restraint and repair, may rise, but as it does, it begins to unlock GABAergic tone. A child who once appeared numb to the world may suddenly become hyper-aware, reactive, and sensitive. This is not pathology. This is awareness, arriving late to the stage.
And then there is calcium, often forming what practitioners call a "calcium shell", which can be a buffering, dampening force that helps us survive overexcitement of the nervous system. When that shell breaks down during mineral rebalance, it releases emotional tone that was once biologically suppressed. The child may cry, rage, laugh unpredictably. The emotions were always there, only now are they metabolically permitted.
The Cortisol-DHEA Rhythm: Between Readiness and Restoration
In children with chronic illness, the hypothalamic-pituitary-adrenal (HPA) axis often shifts into survival mode producing a cortisol curve designed for threat, not growth. As PAH improves and the sympathetic drive quiets, that cortisol output no longer matches the need.
What follows is a lag in adrenal rhythm: cortisol may spike erratically, or dip too soon. DHEA, the hormone of resilience and repair, may remain insufficient.
This hormonal misalignment can result in:
In such states, it is easy to assume behavioural dysfunction. But it is more accurate to say the child is rehearsing safety in a body that has only just stopped defending itself.
The Brainstem’s Echo: PAG, Amygdala, RVLM
Looking deeper, we follow the nervous system’s map back to the periaqueductal gray (PAG) – a midbrain region that stores the architecture of fear. In the years or months of breath restriction, the PAG was a sentinel. It regulated the child's vocal tone, freeze response, and internal autonomic calibration.
Now, with physical threat reduced, the PAG remains on edge, mistaking exertion or novelty for the re-emergence of danger. The dorsolateral PAG, responsible for sympathetic mobilisation, may still overfire. The ventrolateral PAG, associated with parasympathetic freezing and shutdown, may dominate during social stress or unfamiliar environments.
The amygdala, especially the central nucleus, reinforces this pattern. It remembers breathlessness as panic. It marks the sound of running or the posture of effort, as a possible threat. In recovery, these associations remain. The child reacts, not so much to present risk, but to imprints of past suffocation.
Add to this the rostral ventrolateral medulla (RVLM), which governs sympathetic tone and baroreflex sensitivity. Even in the absence of pulmonary pressure, the RVLM may still drive elevated heart rates or blood pressure surges in moments of emotional stress.
The child may appear reactive, hot-tempered, or flooded, but beneath this is a neurovisceral circuit that never received the "all-clear."
Repatterning: The Developmental Rewind
As metabolic energy increases, the brain begins to restore what it postponed. Neurodevelopmental processes begin anew, such as:
This often presents as regression, or more accurately, a reprocessing. Tantrums, sleep disruptions, heightened attachment, and sensory sensitivity may all become visible as the nervous system runs unfinished circuits.
Parents may ask: "Why is she so emotional now that she's getting better?" The answer is this: "Because now her brain has the energy to feel what it previously had to suppress."
The hippocampus, long dimmed by cortisol and hypoxia, begins to reanimate emotional memory. The child may revisit moments she never consciously recorded, like the sounds of hospital monitors, the absence of play, the breath she couldn’t catch. This is not trauma in the classic sense, but a visceral timeline being re-read by a newly lucid brain.
The Mismatch: Physical Readiness, Emotional Fragility
One of the most destabilising dynamics in recovery is the mismatch between external capacity and internal resilience.
As children regain physical strength, expectations (social, familial, educational) rise. They are told, in subtle and overt ways, “You’re better now. You can do more.” But emotionally, they are still rebalancing. The external world no longer reflects their inner fragility, and this discrepancy becomes its own stressor.
The child who can now run 100 metres may still panic when asked to speak in class. The child who no longer needs medication may dissolve into tears when denied a request. These contradictions are not behavioral disorders. They are asynchronous phases of recovery and they are motor, emotional and cognitive systems catching up to one another on different timelines.
There are integrative tools that we can use to support this recalibration metabolically, and it may be worth exploring this in another article? But along side these interventions, what is needed is a new or different or stage-appropriate metric of progress. This metric is one that allows for emotional expression that isn't seen as a problem, but as a vital phase of healing.
The Heart Remembers ... even as the Lungs Heal
The physiology of PAH in children is serious, measurable, and often addressed through pharmacology and possibly, surgery.
But, there is another story, contributing to both cause and effect the emotional aftermath of survival—the cost of functioning under silent breath, the loss of spontaneous joy, the quiet withdrawal from physical play—remains hidden unless we look.
This emotional dysregulation is not failure. It is not regression. It is the sound of the nervous system relearning how to interpret a body that no longer signals threat.
On one hand we might say the body heals first, then brain follows (but not without replaying the songs it once wrote in silence). In truth, the body and the brain are co-creating: both as a cause of PAH, but also during recovery.
Our role is not only to track the blood gases and the oxygen sats. It is to listen when the child cries after climbing the stairs for the first time in a year. To witness when frustration replaces fatigue. To honour the noise that comes when the body is no longer muted by disease.
This is healing; and a return to life.
Be well.
The medications are down. The lab markers are stabilising. The child who once sat out is now sprinting across the oval, breath stronger, skin flushed not with cyanosis but with effort. The pulse is steadier. The HTMA chart no longer screams of loss.
And yet, there is emotional tremor that looks like: lability; nights of crying; rage without reason; and clinginess after independence. This is the storm of a nervous system catching up to the biology beneath it.
This is not regression. This is a phase rarely (never?) named in clinical texts: the post-threat recalibration of the neurovisceral system. In a child with pulmonary arterial hypertension (PAH), emotional dysregulation during recovery is not a mistake or mystery. It is the nervous system's echo and the replay of what it stored while the body was in survival.
To understand this, we must look not only at what is improving: oxygenation, cardiac strain, mitochondrial output, but at what remains disrupted in the rhythm between body, brain, and meaning.
The Illusion of Linear Healing
In clinical practice, progress is often measured through what can be seen or charted: lower pulmonary pressures, reduced medication load, increased activity tolerance. On paper, this is recovery.
But children do not heal linearly. Their nervous systems are developmental fields, not mechanical engines. When the body begins to move out of a disease state, the brain must renegotiate everything it encoded during illness: fear, fatigue, breathlessness, restraint.
What looked like emotional stability during illness was often energetic collapse and a form of conservation. The brainstem quieted non-essential expression to preserve life. The limbic system was suppressed. The frontal cortex down-regulated ambition and exploration.
Many forms of serious or chronic illness will create a general response or adaption to stress. The body (in an adult, but perhaps especially, in a child) will have to un-adapt to recover fully. On a micro level, we have to undo the cell danger response.
Now, with metabolic repair underway, those systems begin to awaken. What appears as dysregulation may in fact be a delayed emergence.
The Mineral Map and the Emotional Tide
A child moving out of a survival state, like PAH, can undergo significant shifts in mineral balance. A well-conducted HTMA can reveal the quiet shifts beneath the visible recovery.
Take zinc and copper, two ions that sit at the fulcrum of emotional expression. As copper begins to detoxify, which is a common occurrence when oxidative stress abates, there is often a concurrent change in norepinephrine and dopamine levels. These neurotransmitters, long buffered by copper’s excess, now return to baseline. In that shift, the child may feel foggy, irritable, or overwhelmed.
Zinc, a mineral of restraint and repair, may rise, but as it does, it begins to unlock GABAergic tone. A child who once appeared numb to the world may suddenly become hyper-aware, reactive, and sensitive. This is not pathology. This is awareness, arriving late to the stage.
And then there is calcium, often forming what practitioners call a "calcium shell", which can be a buffering, dampening force that helps us survive overexcitement of the nervous system. When that shell breaks down during mineral rebalance, it releases emotional tone that was once biologically suppressed. The child may cry, rage, laugh unpredictably. The emotions were always there, only now are they metabolically permitted.
The Cortisol-DHEA Rhythm: Between Readiness and Restoration
In children with chronic illness, the hypothalamic-pituitary-adrenal (HPA) axis often shifts into survival mode producing a cortisol curve designed for threat, not growth. As PAH improves and the sympathetic drive quiets, that cortisol output no longer matches the need.
What follows is a lag in adrenal rhythm: cortisol may spike erratically, or dip too soon. DHEA, the hormone of resilience and repair, may remain insufficient.
This hormonal misalignment can result in:
- Sudden mood crashes in the afternoon
- Hypervigilance upon waking
- Emotional flooding after exercise
- Fear-based behaviours despite physical competence
In such states, it is easy to assume behavioural dysfunction. But it is more accurate to say the child is rehearsing safety in a body that has only just stopped defending itself.
The Brainstem’s Echo: PAG, Amygdala, RVLM
Looking deeper, we follow the nervous system’s map back to the periaqueductal gray (PAG) – a midbrain region that stores the architecture of fear. In the years or months of breath restriction, the PAG was a sentinel. It regulated the child's vocal tone, freeze response, and internal autonomic calibration.
Now, with physical threat reduced, the PAG remains on edge, mistaking exertion or novelty for the re-emergence of danger. The dorsolateral PAG, responsible for sympathetic mobilisation, may still overfire. The ventrolateral PAG, associated with parasympathetic freezing and shutdown, may dominate during social stress or unfamiliar environments.
The amygdala, especially the central nucleus, reinforces this pattern. It remembers breathlessness as panic. It marks the sound of running or the posture of effort, as a possible threat. In recovery, these associations remain. The child reacts, not so much to present risk, but to imprints of past suffocation.
Add to this the rostral ventrolateral medulla (RVLM), which governs sympathetic tone and baroreflex sensitivity. Even in the absence of pulmonary pressure, the RVLM may still drive elevated heart rates or blood pressure surges in moments of emotional stress.
The child may appear reactive, hot-tempered, or flooded, but beneath this is a neurovisceral circuit that never received the "all-clear."
Repatterning: The Developmental Rewind
As metabolic energy increases, the brain begins to restore what it postponed. Neurodevelopmental processes begin anew, such as:
- Myelination of limbic-frontal tracts
- Cortical inhibition
- Interoceptive accuracy
- Executive function modulation
This often presents as regression, or more accurately, a reprocessing. Tantrums, sleep disruptions, heightened attachment, and sensory sensitivity may all become visible as the nervous system runs unfinished circuits.
Parents may ask: "Why is she so emotional now that she's getting better?" The answer is this: "Because now her brain has the energy to feel what it previously had to suppress."
The hippocampus, long dimmed by cortisol and hypoxia, begins to reanimate emotional memory. The child may revisit moments she never consciously recorded, like the sounds of hospital monitors, the absence of play, the breath she couldn’t catch. This is not trauma in the classic sense, but a visceral timeline being re-read by a newly lucid brain.
The Mismatch: Physical Readiness, Emotional Fragility
One of the most destabilising dynamics in recovery is the mismatch between external capacity and internal resilience.
As children regain physical strength, expectations (social, familial, educational) rise. They are told, in subtle and overt ways, “You’re better now. You can do more.” But emotionally, they are still rebalancing. The external world no longer reflects their inner fragility, and this discrepancy becomes its own stressor.
The child who can now run 100 metres may still panic when asked to speak in class. The child who no longer needs medication may dissolve into tears when denied a request. These contradictions are not behavioral disorders. They are asynchronous phases of recovery and they are motor, emotional and cognitive systems catching up to one another on different timelines.
There are integrative tools that we can use to support this recalibration metabolically, and it may be worth exploring this in another article? But along side these interventions, what is needed is a new or different or stage-appropriate metric of progress. This metric is one that allows for emotional expression that isn't seen as a problem, but as a vital phase of healing.
The Heart Remembers ... even as the Lungs Heal
The physiology of PAH in children is serious, measurable, and often addressed through pharmacology and possibly, surgery.
But, there is another story, contributing to both cause and effect the emotional aftermath of survival—the cost of functioning under silent breath, the loss of spontaneous joy, the quiet withdrawal from physical play—remains hidden unless we look.
This emotional dysregulation is not failure. It is not regression. It is the sound of the nervous system relearning how to interpret a body that no longer signals threat.
On one hand we might say the body heals first, then brain follows (but not without replaying the songs it once wrote in silence). In truth, the body and the brain are co-creating: both as a cause of PAH, but also during recovery.
Our role is not only to track the blood gases and the oxygen sats. It is to listen when the child cries after climbing the stairs for the first time in a year. To witness when frustration replaces fatigue. To honour the noise that comes when the body is no longer muted by disease.
This is healing; and a return to life.
Be well.
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