PANS and PANDAS
Nutritional and functional medicine support for children with PANS or PANDAS
Most parents can tell us when their child changed, even if nobody has explained why.
For some children it happens over a weekend. For others it builds over weeks or months.
Families arrive with us from two quite different directions. Some have seen one specialist after another, been given a different explanation each time, and are still looking for answers.
Others have had good medical care and are still stuck. The antibiotics worked, and then they stopped working. The steroids helped enormously for a fortnight. The child gets better while the treatment is running and goes backwards as soon as it stops.
Alongside tour child’s doctor, we look at what esle may be adding to the picture.
Inflammation, mast cell activity, mineral status, food intolerances, gut health and the wider load the body is carrying.
That is the work we do.
What PANS and PANDAS are
Two names for the same kind of change, separated by what set it off.
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PANS
Paediatric Acute-onset Neuropsychiatric Syndrome.
The broader term. It includes strep, but also other triggers: another infection such as a virus, mycoplasma or Lyme, or a non-infectious trigger such as mould exposure or a significant stress on the body.
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PANDAS
Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.
The original, narrower term. It describes OCD or tics linked to a streptococcal infection, where the immune response to strep is thought to affect the brain.
In practice the children look very much alike
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Obsessive or compulsive behaviour
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Restricted eating
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Regression
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Deteriorating schoolwork
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Tics
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Anxiety and mood swings
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Sensory sensitivity
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Disrupted sleep
The idea underneath it is that the immune system, having been provoked, starts to affect the brain.
That is why it can look psychiatric, yet flare and ease in a pattern that often follows infection rather than events in the child’s life.
Onset is not always sudden
The stories you hear are the dramatic ones. Fine on Monday, unrecognisable by Friday. For a lot of children it is not like that. It starts small and then it takes over, and every bit of it gets waved off as a phase, or school, or hormones, or just the autism.
Stanford looked at ten years of these children and found that only about half met the criteria for a sudden onset at their first flare. A quarter more met them later, and a quarter had a similar neuropsychiatric picture but had not had a sudden onset by the time the study ended. The researchers found that many children had flares that came on more gradually before they ever met the criteria, and said clinicians should watch for new symptoms even when a child doesn’t meet them straight away.
So if your child changed slowly, it is still worth raising.
You don’t need a diagnosis to work with us.
Plenty of the children we see have no label at all, or are still waiting for an assessment, or have been given a label that doesn't really explain anything. We work with the child in front of us.
How we work: foundations first
We work in a particular order, and the order is set by the child rather than by a protocol.
Before we go anywhere near the deeper work, we focus on stability. That means calming the things that keep a child in a state of high alert and stop anything else working: the stress response, inflammation, the mast cells that drive so many of the reactions we see, and the mineral balance the whole system runs on. Until those are settled, anything else we try tends not to last, and a child who is already flaring will often react badly to it.
What that means in practice depends entirely on the child.
If a child is badly constipated, we deal with that. If a child is inflamed and flaring, that comes first. What we do not do is work through a fixed list regardless of the child, or pile everything on at once. Get the order wrong, or ask a child to tolerate too much before they are ready, and you can set them back months.
Once a child is stable, we go deeper: the gut, methylation, whatever that particular child’s picture calls for.
Thirteen years and around 3,500 families have taught us where to start and, more to the point, what order to do things in.
We do not work in isolation
We work closely with a prescribing GP and other specialists who know these children well. If a child needs a medical assessment, a prescription or a specialist opinion, we say so, and we can usually help you get to the right person rather than back to the end of a waiting list.
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“Transformed back into a happy 12 year old”
Our daughter Poppy was diagnosed with PANDAS four years ago, aged 8. At that point she could not attend school, had chronic physical and vocal tics, severe anxiety, OCD, intrusive thoughts and irrational fears, could not retain information in school and could not sleep alone or go upstairs on her own. A private consultant treated her with an intense course of antibiotics and we saw a vast improvement at first, but her OCD and anxieties remained, and her other symptoms returned whenever she became unwell. At best they were manageable, but the intrusive thoughts were still a daily struggle.
That is where we were when we came to Brainstorm Health. They went through Poppy's full history, leaving no stone unturned. She started a detailed course of supplements, changed her diet to gluten, sugar and dairy free, and we moved to chemical-free products at home. Within a few days we started to see improvements, and a reduction in the OCD and intrusive thoughts. Blood and DNA testing gave us a detailed picture of Poppy's body to work from. In a matter of months she has been transformed back into a happy 12 year old and is leading a normal life again.
— S.M, Stansted
What working with us looks like
Everything is done online, so where you live makes no difference. Families work with us from all over the world.
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Fifteen minutes with one of our practitioners. Nothing to prepare, nothing to pay, and no obligation at the end of it. You tell us what has been happening, we tell you whether our approach is right for your child, and you decide from there whether you want to go further.
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Seventy five minutes on Zoom, after you have filled in a detailed questionnaire covering your child’s history, symptoms, diet, sleep, gut and everything that has been tried before. We go through all of it with you, and we leave you with the first few things to start on, chosen as the right place for your child to start, rather than everything at once.
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Stool, urine, saliva or blood. Only where the result will actually change what we do, and only where it is realistic for your family.
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This is the opposite of a fixed protocol. At first we review every six to eight weeks, adapting the plan each time to how your child has responded. As they need less support, the reviews space out, because the aim is always to be doing less over time, not more. We build things up carefully rather than overwhelming a child, or a family, with too much at once. Depending on what the picture calls for, the work can include targeted nutritional support, amino acid therapy, phospholipid therapy, our Gut Restoration protocol, micro-immunotherapy, and the diet, lifestyle and environmental changes that do so much of the heavy lifting. We refer on where you need it.
Most families are with us for at least six months. It is patient work, and we would rather say so at the start.
Where to start
You do not have to decide anything today. Book a free fifteen minute call, tell one of our practitioners about your child, and they will tell you what they think, what it would involve and what it would cost. You can take it from there.