What Is PANS/PANDAS And What Can I Expect?
The first time a doctor tells you that your child has PANS or PANDAS, it feels like your world has just crashed down and crushed you.
All the hopes and dreams you had for your baby seem impossible now. Your vision of parenthood and family starts to twist and distort.
But I’m here to tell you that this is the worst of it and it does get better!
Getting a diagnosis of PANS or PANDAS for your child can bring up a whole mess of emotions.
You can expect to feel some or many of the following over the next few weeks: fear, relief, uncertainty, love, wonder, exhaustion, loneliness, and misery. There’s probably a whole lot more, but you get the idea.
The diagnosis is actually the beginning of the light at the end of the tunnel. You’ve already watched your precious child turn into someone you don’t recognise and it scared the heck out of you!
Being able to diagnose it and name it means you now have the power to manage it.
As tough as it is, it’s not all bad.
The rewards from seeing your child with PANS or PANDAS achieve a goal that you know they’ve worked so hard to accomplish is priceless. And as a parent, you are about to develop skills that will set you up to manage any situation imaginable.
And after 8 years of managing PANDAS with my son, Xavier, it gives me great pleasure to tell you that you WILL get your baby back and he or she DOES have a bright and successful future ahead!
Those hopes and dreams you have are still possible!
So please, do me a favour, and take a deep breath right now.
Go ahead, we have time - take a few deep breaths and say it with me:
“This too shall pass. I’m a great parent and I will give my child the best advantage possible. We’ll get through this and be an amazing family.”
After a few deep breaths, let’s look at what we know and what you can expect...
What Science Tells Us About PANS/PANDAS
Doctors, researchers, and parents are still learning about PANS and PANDAS (and other learning difficulties for that matter) but there are a few things that we do know.
According to moleculeralabs.com, PANS/PANDAS are autoimmune conditions that disrupt normal neurologic functioning.
This produces the sudden onset of OCD (Obsessive Compulsive Disorder) and/or motor tics. It can be accompanied by other conditions such as anorexia, anxiety, urinary problems, hyperactivity, mood swings, and sleep disturbances.
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome which can be brought on by a variety of different infections.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection. This can only be caused by strep infections which disrupt the child’s neurology.
In simple terms, PANS/PANDAS occurs when our child’s immune system attacks their normal body tissues rather than the infectious agent because it can’t tell the difference between the molecules. In this case, antibodies in the basal ganglia in the brain are attacked.
Diagnosis usually occurs between the ages of 3 and 7 years old and is done by a process of elimination, which is probably why many Doctors miss it, or are reluctant to diagnose it.
Your paediatrician can run blood tests and/or take a throat culture to diagnose a strep infection but as yet, there is no specific test for PANS or PANDAS.
The Signs and Symptoms of PANS/PANDAS
Although these are two separate conditions the symptoms are the same.
Unfortunately, many Doctor’s aren’t trained to know the difference between PANDAS and similar looking conditions such as Rheumatic fever so it may take a while, and not a little persistence, to get the right diagnosis.
And it is important that the diagnosis you receive is the right one, in order to get the right treatment. While many Doctors don’t believe that PANS/PANDAS is a real condition, the tide is turning and many are learning more about it.
Symptoms can include:
obsessive, compulsive, and repetitive behaviours
visual or auditory hallucinations
separation anxiety, fear, and panic attacks
incessant screaming, irritability, and mood swings
depression and suicidal thoughts
Inability to focus and hyperactivity,
tics and unusual movements
Sensory issues such as sensitivity to touch, taste, sound and light
Deterioration of motor skills, poor handwriting
Sleep disturbances and bedwetting
Weight loss due to refusing to eat, or refusing to eat certain foods
A near catatonic state
All of this sounds frightening, doesn’t it?
I’m not going to lie, this stuff is scary.
However, it is treatable and symptoms are manageable with prevention of further infection being a big focus. As a parent, I chose to treat Xavier naturally and it has definitely turned out to be the best decision we could have made.
Treatment of PANS and PANDAS
The first thing to do is treat the initial infection and to ensure that it doesn’t reoccur. Your Doctor will probably prescribe antibiotics. They may also prescribe antidepressants, mood stabilisers, and steroids.
Because you’re reading this blog, I’m going to assume that you, like me, prefer to use natural treatments, or a mixture of natural, medical, and behavioral solutions.
As always, consult with your doctor and keep them in the loop about what you’re using/doing.
If your doctor tries to tell you not to do these things, you have permission to find a doctor who will work with you and take your concerns seriously.
Better to switch doctors than feel like you have to hide this stuff from them.
Here’s a brief look at the natural solutions we use to help Xavier thrive and keep flare-ups at bay.
Banned toxic chemicals from our home
Do you have any idea how many common household cleaners contain formaldehyde?
And that’s not the only nasty chemical in them. We threw them all out and now use natural cleaners I make myself or products such as Kin Kin Naturals and Norwex mops.
The GAPS diet
This was created by Dr Natasha McBride MD MMedSci (Neurology), MMedSci (Human Nutrition) in 2004 and it stands for Gut And Psychology diet.
You can read more about it in a previous post but basically it’s a way of eating that was created specifically for people who have conditions that affect the brain. Exactly as PANS and PANDAS does but also Autism, stress disorders, dyspraxia and ADHD (Attention Deficit Hyperactivity Disorder.
We take a proactive approach to physical and mental health in our house and essential oils are a huge part of that.
I only use doTERRA oils because they are, without a doubt, the highest quality I’ve come across. All their oils go through rigorous testing at every stage of the process and are sourced ethically so that this resource won’t be depleted.
Is There a Cure for PANS/PANDAS?
As you’ve probably guessed by now, we don’t know of a “cure” for PANS/PANDAS as such.
After saying that, symptoms can be managed, reduced, and lessened. Many symptoms disappear as children get older and their behavior changes. My children, and many others, are proof of that.
There needs to be, and I assume there will be, further investigation done into PANDAS to determine if this is something that you child can grow out in adulthood or even adolescence. In the meantime, the most important thing is to take a proactive stance and avoid further infection.
Obviously, kids are highly susceptible to bugs, colds, and flu’s but catching them as early as possible can often reduce the impact of them.
Personally, we’ve found that a gut-friendly diet, a non-toxic home, and the use of preventative essential oils have enabled him to thrive and grow. As a bonus, we’ve all thrived from the changes we’ve made and nothing would convince me to go back to how things were before.
For more information about PANS/PANDAS the PANDAS network is a terrific resource.
I’d also like to invite you to my private Facebook group for parents of kids with learning difficulties where we share news, experiences, and stories about what’s working.