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March 17, 2021

The PANDAS Parent Starter Kit (Where to start after a PANDAS diagnosis- or if you suspect it)

PANDAS syndrome, though becoming increasingly more common and well-known, is still poorly understood by the majority of doctors. If your child has recently received a PANDAS diagnosis (or if you suspect your child has PANDAS or PANS), you’ll find the “PANDAS Parent Starter Kit” below helpful.

If you’re the parent of a child with puzzling and frustrating behaviors, you’re likely wondering what you’re doing wrong, what’s wrong with your child, and what can be done to improve your child’s behavior and relationships in the family, and to bring peace to your home.

Let me assure you, if you’ve landed here, you’re on to something. You know something isn’t quite right with your child, and you’re committed to helping him or her. Let me also assure you that there is hope! Whether your child has already received a PANDAS diagnosis, or whether you suspect that’s what could be going on, the tips below will help you get started to getting your child back on the right track.

How do I know if my child has PANDAS or qualifies for a PANDAS diagnosis?

First things first- is your child exhibiting symptoms of PANDAS? PANDAS symptoms can be wide-ranging, but mostly include neurological and behavioral abnormalities, like:

Obsessive compulsive disorder
Bipolar disorder
Anxiety
Hyperactivity
Restrictive eating
Tics
Depression or suicidal thoughts or ideation
Developmental or behavioral regression
Rage, aggression, or irritability
Sensory processing disorder

Often, these symptoms develop almost overnight, and usually following an illness. Sudden, acute onset of behavioral disorders is generally believed to be a hallmark of PANDAS syndrome, although some children do experience a slow decline that worsens with exposure to illness or other triggers.

What are the causes of pandas?

Because PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, the belief is that the main cause is a strep infection. However, evidence continues to emerge which links symptoms of PANDAS to many other triggers, which is why a broader diagnosis of PANS may be more appropriate for many children exhibiting symptoms.

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. Besides a strep infection (which may or may not present as a classic sore throat), the neuropsychiatric symptoms above can result from exposure to:

mold
Lyme disease and co-infections
environmental triggers and chemicals (though these have more of a cumulative effect and may result in a slow decline, rather than acute onset of symptoms)
flu
Espstein Barr virus (mono)
stomach bug
other acute infections
vaccinations (read about how vaccinations can trigger an autoimmune response here)

The best way to describe how PANDAS or PANS develops is that it is an autoimmune response to illness or some other trigger. Rather than creating antibodies against the disease like a well-functioning immune system should, the immune system instead creates antibodies against brain tissue. When the immune system attacks brain tissue, we see undesirable behaviors.

For my son, symptoms of PANS began following a bronchial infection. He had a fever that persisted off and on for weeks, and a cough that lasted even longer. Once the symptoms finally cleared, he had changed. He had tics and he was defiant and unmoved to obey regardless of motivation and without fear of punishment.

While he had always had symptoms of ADHD, these new symptoms were especially worrying. He began to have episodes of rage and would melt down over seemingly small things. It took us six years to get a PANDAS diagnosis. Six years of wondering what I was doing wrong as a parent and trying doctor after doctor, a variety of treatments and supplements, and strict diets to heal him.

But those six years were not a waste. Though it has been a heck of a roller coaster ride, we’ve gotten my son to places of being totally symptom-free more than once. He is currently doing well, and we are so thankful. Below, I’ll share what we’ve learned- the PANDAS Parent Starter Kit, as it were.

How do you treat PANDAS?

After reading the above, you may be pretty sure this is, indeed, what your child is dealing with. Whether your child has all or just some of the symptoms, whether there was a slow decline or an acute onset, the tips below can help your child recover.

Does PANDAS syndrome go away?

Yes! Many children reach full recovery from PANDAS. Because the underlying causes and triggers vary, modalities for reaching complete recovery can also vary.

The PANDAS Parent Starter Kit:
where to start after a PANDAS diagnosis- or if you suspect PANDAS or PANS

Below, you’ll find some steps you can take to help your child begin recovering now, whether you have an official PANDAS diagnosis or not.

Diet

Sorry. You knew I was going to start here. You knew it was coming: you must change your child’s diet. But even if you’re not 100% ready to go all in, there are baby steps you can take to begin improving your child’s behavior now!

To begin with, choose a handful of ingredients to eliminate totally and completely, not allowing your child to have them even on occasion. Here are the ones I suggest starting with:

Food dyes. This is non-negotiable. Kids with neuropsychiatric disorders cannot tolerate food dyes because of their neuro-toxic properties. They stimulate brains cells and cause them to misfire, leading to early brain cell death.
Artificial sweeteners. So you’re trying to do better and cut down on the sugar in your child’s diet? Unfortunately, when it comes to brain health, artificial sweeteners are worse than sugar. Like food dyes, the chemicals are neurotoxins that can cause unwanted behaviors. Be wary of anything labeled “sugar-free.”
MSG. Another neurotoxin that hides under a variety of names.
High fructose corn syrup. This syrup is chemically-derived from corn starch, giving it a high-fructose makeup which goes straight to the blood stream, causing both blood sugars and behaviors to spike.

Once you’ve tackled the worst ingredients, you’ll want to move on to eliminating ingredients like gluten and dairy from your child’s diet. Like children with autism, a gluten-free, casein-free diet can greatly benefit children with other neurological disorders like PANDAS or PANS.

Unfortunately, some parents don’t see a big difference in their child from just the above changes, so they give up and quit a healthy diet. The truth is, the above changes may not be enough for many children with PANDAS.

Many PANDAS kids do best with a very strict paleo diet, eliminating not only junkie ingredients, gluten, and dairy, but also refined sugars, legumes, and all grains. Yes, eliminating all grains means that store-bought gluten-free foods are a no-go.

Personally, my son does best on a grain-free, low carb/starch, high-fat GAPS diet (read about why he can’t eat corn, a staple in many gluten-free diets, here). The GAPS diet, while intensive and difficult, is best for children with neuropsychiatric disorders because it heals the gut, the root cause of behavioral disorders.

Interested in the GAPS diet? Read more and find recipes here.

You don’t have to wait for a PANDAS diagnosis to see benefits in your child’s behavior from making diet changes. Choose a place to start, explain to your child that these changes are so he can feel better, and dig in (and don’t look back!). Changing your child’s diet is truly the cheapest and easiest way to help your child; I promise!

Wise supplementation

There can also be helpful supplements you can use to compliment your child’s diet changes. Start slowly, experiment, and don’t be discouraged if you don’t find just the right combination right away. Here are a few that we have found helpful, which we go back to time and time again.

Bioray Kids Happy- while this supplement isn’t entirely compatible with the GAPS diet because it has added flavors, it has been one of the most helpful supplements for quieting a behavioral flare.

Happy contains a unique blend of liver and immune-system supporting mushrooms, as well as chlorella, which supports detoxification, plus herbs that support the removal of unwanted organisms, like bacteria, viruses, and parasites. Most importantly, it has been clinically proven to reduce angry outbursts. Read more about our experience with Happy here, or buy Happy here.

Smidge probiotic- it’s important to use a good probiotic when working to heal the gut. While we have experimented with a variety of probiotics, we always come back to Smidge for a number of reasons, not the least of all that it was developed specifically for sensitive children with neuropsychiatric disorders. It’s free of bacterial strains that will exacerbate behavioral symptoms, as well as those that increase histamines, which can result in unwanted behaviors.

Smidge is both gentle and effective, making it a good choice for PANDAS kids. Plus, one bottle (though seemingly expensive up front) lasts a long time, making it the cheapest probiotic (per dosage) that our family has used to date. Buy Smidge here.

Oregano extract- oregano is a very powerful herb that works to combat a variety of infections, especially strep. It has anti-inflammatory, anti-microbial, and anti-fungal properties, and may even kill pathogens like MRSA and listeria. Oregano essential oil can be useful for ailments like colds and flu.

While we stick with oregano extract in general, we have also found that a supplement called Oregano Spirits works well when we need to pull out the big guns. When we originally used it for our son, he had about a week of die off where he didn’t feel well, and once he felt better, he was a new kid. This was the first time he went into remission.

Get oregano leaf extract here and Oregano Spirits here.

Cod liver oil- while some children with tic disorders don’t do well with cod liver oil, we have found it to be one of the most effective supplements for stopping tics. Between the brain-fueling omega fats and the immune-boosting vitamins A and D, I think cod liver oil is one of the most important supplements for any of us to take. (Read more about how and why to choose a good cod liver oil here.)

There are only a couple brands of cod liver oil I trust and have had good results with. My favorite, most high quality is Rosita’s Extra Virgin Cod Liver oil, a small batch, artisan cod liver oil that is the purest available. Read more about it and buy it here.

My son has also benefited from Nordic Natural cod liver oil, which I sometimes pick up at the grocery store between bottles of Rositas. You can check that one out here.

Magnesium- there are a variety of magnesium supplements available, but those we’ve had the best luck with are MagMind and Wake Up Maggie. Read more about the best types of magnesium here.

While this is not an exhaustive list of supplements that can help with symptoms of PANDAS, these are a few we have found very helpful. Always go slowly, start one supplement at a time, and check with your healthcare professional before starting a new regimen.

Medical testing

Whether or not you’ve gotten an official PANDAS diagnosis, there are some tests that can be helpful to get to the bottom of some of the underlying conditions contributing to your child’s behavior.

We’ve done extensive testing over the years. Some has been expensive, unnecessary, and, ultimately, unhelpful. Others have been helpful and given us insight about how to proceed with treatment.

Tests that can be helpful

Stool testing. This can show what pathogens are overgrown or lacking in your child’s gut. It was stool testing that led me to suspect PANDAS, because, although blood testing didn’t find strep, stool testing did.
DNA/genetic testing. This can help you determine if your child has any genetic mutations contributing to improper detoxification, as well as give direction for other supplementation down the road. Read more about MTHFR mutations and how to test for them here.
Blood tests for specific pathogens. This may give you a start to figuring out what underlying infections your child might be battling, including strep, epstein barr virus, Lyme disease, and more. The caveat is that blood tests aren’t always accurate, and while they may provide answers, they could be a dead end too.

Tests that I would skip

Food allergy testing. While my son is clearly (clearly!) unable to tolerate milk or gluten, neither of these ever showed up on any allergy tests we’ve had done for him. Your better bet is to do an elimination diet or just dive in to a gut-healing diet like GAPS. The key is healing leaky gut to eliminate food allergies.
The Cunningham Panel. Personally, we chose not to have this test done because a. our son was able to get a clinical PANDAS diagnosis since it was clear he had the disorder and b. it is an expensive test which insurance isn’t likely to cover. Not only that, but in my understanding, it is most effective for showing psychiatrists which medications may be helpful, and we’ve chosen to treat PANDAS without psychiatric medications. However, if it’s important to you to get a medical PANDAS diagnosis, as well as get more information about what’s happening in your child’s brain, you may want to do this test. Learn more about it here.

Finding a doctor

If you are going to go the route of having tests run and may be considering using some conventional treatments (like antibiotics or IVIG) to compliment a healthy diet and supplementation, you can’t depend on just any doctor.

Most pediatricians and doctors are not familiar enough with PANDAS to offer treatment solutions, and many even deny that PANDAS or PANS even exist!

You’re much better off finding a PANDAS specialist, who will know which tests to run, which medications and supplements may be a good fit for your individual child, and how to support you with healthy lifestyle changes.

Search here to find the nearest PANDAS specialist to you, then be sure to call and ask questions before scheduling an appointment. You may also want to search for groups on Facebook where you can find other PANDAS parents near you who have had experience with a certain doctor. Many times feedback from other parents can be invaluable when searching for a doctor you can trust.

Use this PANDAS Parent Starter Kit to keep from getting overwhelmed

If your child has received a PANDAS diagnosis, or even if you just suspect your child might be suffering from PANDAS or PANS, I know it can be scary, overwhelming, and frustrating trying to get help. I’ve been there.

The emotions we experience as the parent of a PANDAS kid cannot be adequately described in words. We often feel like our child has been kidnapped and that we will never see them again. And we would do anything in our power to help them recover.

Take heart. There is hope for your child to recover, and you don’t have to do everything all at once. The above steps should be looked at as baby steps, with diet being the foundation of recovery.

Many children find healing in a variety of ways, which cannot be thoroughly covered in one blog post. However, just starting somewhere and working to lower your child’s inflammation is an excellent place to start and get him on the road to recovery.

Has your child received a PANDAS diagnosis? What steps have you taken to begin recovery? Share in the comments below!

December 14, 2018

How To Stop Tics Naturally

Trying to figure out how to stop tics naturally? As it turns out, tics and other childhood brain disorders have a common root: inflammation in the brain. Whether the cause is genetic, autoimmune, or an infection – you can support your kid’s behavior with diet and supplements.

The first time I noticed my son had developed a tic disorder, I was terrified. Clearly, there was something happening in his body that he had no control of. It started around the same time he developed PANDAS symptoms, following a respiratory illness.

It was subtle, but there was no doubt, he was making a soft sighing sound at times when he otherwise should not have been making a sound: while sitting quietly watching TV or reading a book, for instance. I had no clue what this new and puzzling symptom was, but I knew it was neurological in nature, which was the scariest thing of all to me.

Since that initial development of tics, my son’s tic disorder has come and gone, usually after careful and deliberate supplementation. They have shown up as an eye-widening tic, a blinking tic, and a throat clearing or vocal tics at varying times, but no doubt, they are the worst when he is battling the most inflammation.

Not sure if what your child is struggling with might be a tic? Read on.

What is a tic disorder?

Tic disorders usually begin in childhood, from ages five to seven years old.

When your child has a tic, you see the body move suddenly and uncontrollably. Movements appear non-rhythmic and repetitive.

Tics that involve movement are called motor tics. Most cases start with simple tics like eye blinking and progress to more complex tics. Examples of simple motor tics include:

Nose wrinkling
Eye blinking
Facial grimacing
Shoulder shrugging

Tics that involve sound are called vocal tics. Vocal tics tend to begin one to two years after the onset of motor tics. Examples of simple vocal tics include:

Coughing
Throat clearing
Grunting
Sniffing

Three types of tic disorders

The American Psychiatric Association recognizes three types of tic disorders:

Provisional (or transient) tic disorder
Chronic tic disorder
Tourette’s syndrome

A tic disorder diagnosis is based on what type of tic your child has – motor, vocal, or both – and how long you’ve noticed it. Under one year and your child would have a provisional tic disorder. Over a year, and the diagnosis may be chronic tic disorder or Tourette’s syndrome.

Provisional tics are common and can affect up to 10% of kids. Chronic tic disorders – including Tourette’s syndrome – can affect 2% – 4% of kids.

For kids experiencing tics, they can feel them coming. It might start with an itch or a sensation in a particular muscle group. If a child attempts to stop a tic from happening, the sensation or itch may build up in intensity.

Tic episodes happen in clusters. In other words, they get worse, better, and then worse again as time passes. This waxing and waning of tics can happen at least three times a year.

Parents of kids with tics notice that tics tend to increase when their child feels tired or stressed. They also happen more often or with more intensity towards the end of the day.

What causes a tic disorder?

Officially, tic disorder causes are TBD – or to be determined.

But with that said, researchers have found interesting clues that can help parents learn how to stop tics naturally.

For example, there’s good evidence that the development of a tic involves the immune system. Mothers of kids with tic disorders are more likely to be diagnosed with an autoimmune disease like ulcerative colitis, rheumatoid arthritis, or multiple sclerosis.

How is this possible? Researchers suggest that antibodies moving through the placenta may be responsible for tics along with other related disorders, like OCD. These antibodies may activate the baby’s immune system and affect normal brain development.

In children with PANDAS and tics, the likelihood of autoimmune disease in the mother is even higher.

Moms, this does NOT mean that your kid’s tics are your fault. But it does give us information on how to stop tics naturally (more on that in the next section).

In addition to maternal autoimmunity, you’re also more likely to see autoimmunity in a child with tics and OCD. This includes autoimmune diseases like:

Sjogren’s syndrome
Celiac disease
Guillain–Barre syndrome
Crohn’s disease
Hashimoto’s thyroiditis

Non-streptococcal triggers like other bacteria and viruses can also activate the immune system and show up with tics and other neuropsychiatric disorders.

More likely, we’re seeing the effects of a cytokine storm.

Disorders related to tics

When you flip through the medical literature and listen to stories from other moms, you may notice that tics tend to show up with other disorders beyond autoimmune disease in the mother. This includes:

Obsessive-compulsive disorder, or OCD
Autism
Attention-deficit hyperactivity disorder, or ADHD
PANS and PANDAS

For example, roughly 65% of kids with Tourette’s syndrome are diagnosed with ADHD. Over half these kids also have signs of obsessive-compulsive symptoms while 30% can be fully diagnosed with OCD.

Do you think that any of these disorders have something in common?

It appears that they do.

Even in the case of ADHD where the cause is unknown, researchers working together at the University of Texas have found that an increase in inflammatory markers correlates with the severity of ADHD symptoms.

This means that the immune system plays a role. And if you can work with your child’s immune system – whether the root is genetic, autoimmune, or an ongoing infection – you can stop tics and reduce other signs of inflammation.

How to stop tics naturally

Learning how to stop tics naturally is as easy (and difficult) as figuring out what triggers inflammation in your child’s body. It’s also about making sure your kid has the right nutrition to fight infection and soothe inflammatory fires.

1. Follow a gluten-free, casein-free diet. For this to work best, make sure that the whole family is on board. Both gluten and casein are major triggers of autoimmune disease and it’s essential to remove them from the whole family’s diet.

2. Ditch the food dyes, artificial sweeteners, and high-fructose corn syrup. Food dyes and artificial sweeteners are toxic to your child’s brain. While I also recommend cutting back on sugar to your support your kid’s immune system, artificial sweeteners are worse than sugar.

3. Make sure your child takes a daily DHA supplement. Omega-3s are anti-inflammatory and excellent for brain health. When it comes to omega-3s, plant and seed oils won’t cut it. For example, flax oil is poorly converted into long-chain omega-3s and do little (if anything) to raise DHA levels. (Read more about the truth about omega fats here.)

Get my favorite DHA supplement here.

4. Remember to include choline-rich foods. If you follow a restricted diet, eggs may be off the menu. They’re a common allergen and trigger food. But egg yolks are also the easiest way to get choline in the diet. Choline is critical to a healthy, happy brain. If eggs aren’t an option, be sure to include other choline-rich foods.

Click here for a list of foods high in choline.

5. Use Smidge Probiotic. Why probiotics? Because the gut-brain axis is a real thing. And a healthy gut means a happy brain.

But not all probiotics are created equal. Smidge is free of fillers or prebiotics and it gently supports your child’s immune system. Most importantly, it’s free of probiotic strains that produce histamine – a pro-inflammatory compound that the body works hard to get rid of.

Click here to start using Smidge.

My #1 tip: stay flexible

You may already know that there is no single supplement or cure that will forever stop tics.

Stopping tics and other disruptive behaviors is really about managing the underlying conditions that your child lives with. It’s also about creating a positive experience around these changes.

Being different – especially for a kid – can be rough. Whether it’s the actual tic or needing to reinforce a gluten-free diet for the sake of better health, how you frame each experience matters.

So stay flexible and stay open to discovery.

As the body changes, your approach will too. That’s okay.

There’s no finish line.

Encourage your child to check in with how he feels after eating an “off limit” food or skipping supplements. Explain why these foods are off limits or what probiotics do in the body. And allow him some room for making mistakes and making his own decisions.

As you and your child figure out ways to put out inflammatory fires with diet and supplements, be sure to also talk with your child about the importance of self-love and even humor when a tic shows up in public.

After all, laughter is the best medicine.

Not only does laughter combat inflammation, but it also helps your child celebrate differences rather than feel ashamed of them.

What have you done to stop tics naturally? Share in the comments!

November 29, 2018

PANDAS Symptoms Checklist

Obsessive clinginess, aggressive outbursts, repetitive blinking, and new problems popping up at school? If you’re nodding YES and looking for answers, read through this PANDAS symptoms checklist. It will help you figure out whether or not your child has PANDAS. And if so, where to start after a PANDAS diagnosis.

What is PANDAS?

According to Margo Thienemann, MD at Stanford University, PANDAS is defined by the sudden loss of appetite and the onset of an obsessive-compulsive disorder, otherwise known as OCD.

A PANDAS child must also show symptoms from at least two of the following categories:

Anxiety
Mood swings
Irritability or aggression
Poor performance at school
Sensory abnormalities
Sleep disturbances, bed wetting, or needing to pee frequently

One of the things that sets PANDAS apart from other forms of OCD like PANS (pediatric acute-onset neuropsychiatric syndrome) is that it’s triggered by an infection.

Specifically, a group A streptococcal infection.

Strep throat is the most notorious type of infection caused by group A strep. But there are other infections that can show up on the skin or along mucous membranes.

When trying to put the pieces together, it may help to know that group A strep can manifest as:

Strep throat: An infection at the back of the throat, including the tonsils. It can show up as fever, sore throat, red tonsils, and enlarged lymph nodes.
Impetigo: And infection of the skin. Shows up as yellowish crusty sores on the face, arms, or legs.
Vaginitis: Inflammation of the vagina. Includes signs like itching, burning, pain, and discharge.
Sinusitis: A sinus infection. Shows up as thick mucus in the nose or a plugged nose. There may also be fever, headaches, and a sore throat.

Note: Group A strep triggers PANDAS. It does not cause it.

Just because your child acquires a group A strep infection, this does not mean that it will automatically lead to PANDAS.

The following symptoms can also manifest in PANS as well, as the symptoms of PANDAS and PANS are generally the same, though the underlying causes are different.

A major hallmark of PANDAS syndrome is a sudden, acute onset of psychiatric symptoms, although it should be noted that some children do experience a slow decline. These psychiatric symptoms most frequently emerge following an illness like strep throat, though keep in mind that other infections and environmental triggers make provoke symptoms.

Your PANDAS symptoms checklist

If your child shows PANDAS symptoms that pose a risk to safety, you may want to seek immediate support. This includes physical violence, aggression, refusal to eat or drink, and suicidal behaviors.

It’s also important to note that no two PANDAS cases are the same. Your child may need very different care than another child.

What’s more, the come-and-go nature of PANDAS symptoms means that you will need to make periodic adjustments as your child gets better and appears to “relapse.” Symptoms might also change from one to another – for example, they might move from severe anxiety to aggression or depression.

This is to be expected. It’s not a failure of PANDAS remedies or of the parent.

Because PANDAS symptoms are never stable, be careful not to “chase” the illness and react with new therapies, new drugs, or higher dosages.

1. Sudden loss of appetite

A sudden refusal to eat or drink is a classic sign of PANDAS, even without OCD symptoms.

In this case, it’s important to focus on nutrition while addressing underlying inflammation. A shift in diet is typically necessary.

Click here to find out more about an anti-inflammatory diet for children.

Some PANDAS children may feel afraid of choking or vomiting. If this is the case, breathing and relaxing techniques can help.

2. Tics

As many as 70% of those with PANDAS develop tics. Common tics include eye blinking and throat clearing.

PANDAS children with tics are more likely to have a poorer performance at school, trouble with handwriting, a hard time with memory, and lower self-esteem.

In some cases, a therapy called habit reversal training can help get rid of tics by teaching the child to stare or look up during a blinking tic or practice slow, rhythmic breathing for vocal tics.

3. Anxiety

Anxiety, particularly separation anxiety, is found in most PANDAS patients. According to Dr. Margo Thienemann, over 90% of patients show signs of separation anxiety.

This means excessive anxiety when away from home or when away from a parent.

While entirely normal and healthy for small children ages 6 months to 3 years, separation anxiety in older children or adults raises a red flag.

This anxiety can be so severe that it interferes with you and your child’s day-to-day activities.

4. Mood swings

Mood swings and depression are common in a PANDAS child during the later stages of illness.

Depression can sometimes be the result of ongoing pain.

There are two types of pain in PANDAS children: arthritis and pain due to how the body processes sensations.

When a PANDAS child experiences pain, there’s often an increased sensitivity to light, sound, and smells. There might also be tummy pain, headaches, muscle aches, daytime tiredness, and brain fog.

With touch, you may find areas of tenderness that follow the same distribution as fibromyalgia.

5. Irritability or aggression

Irritability and unprovoked violence can be the most difficult on the PANDAS symptoms checklist because this type of behavior puts you or your child in danger.

As with mood swings and depression, sensory sensitivities, fatigue, and trouble understanding the environment can make a child feel vulnerable and aggressive.

Angry meltdowns can last for 45 minutes to an hour or longer. Typically, once the rage passes, your child is “back.”

Your child might feel remorse or not remember the episode at all.

In the moment, punishment is the last thing that you want to do. The best thing you can do is distract your child – if possible – and wait for the episode to pass.

Keeping a calm home environment without a lot of stimulation or demands can also help.

6. Poor performance at school

In a set of guidelines published in the Journal of Child and Adolescent Psychopharmacology, Dr. Margo Thienemann explains that many children with PANDAS need some sort of accommodation at school.

Often these kids feel challenged (and challenge their teacher) with PANDAS symptoms like:

Handwriting difficulties
Trouble paying attention or staying focused
Difficulty with math
Memory issues
Physical pain (more on that below)
Frequent absences

Hyperactivity may be caused by anxiety, a complex tic sequence, feeling tired, sensory overload, or the urge to pee.

The inability to focus in school might be caused by lack of sleep, mood swings, intrusive thoughts, or “brain fog.”

If you suspect PANDAS or have received a PANDAS diagnosis, there are some things that parents and teachers can do together to help a PANDAS child.

Excuse absences and dismiss required makeup work or tests
Allow the parent to be in or near the classroom
Excuse the child from activities and approve alternative methods, like typing rather than writing and erasing or listening to audiobooks
Work with the frequent need to pee and allow the child to leave without asking permission
Have a notetaker in class, enlarge worksheets, use large grid paper, allow a keyboard or voice recorder
Permit the child to use a calculator and times table
Encourage rest periods during the day and less homework

A PANDAS child’s needs change from day-to-day. As PANDAS symptoms improve, parents and teachers can work together to shift the level of support available at school.

Note: many parents to choose to pull their children out of public school in order to homeschool after PANDAS symptoms begin to crop up. This can be an excellent choice for some children if you’re in a position to do so.

7. Trouble sleeping

Trouble sleeping is often interwoven with PANDAS symptoms.

For example, sleep trouble may be the result of separation anxiety or OCD bedtime rituals.

Bed wetting, nightmares, and sleep apnea from enlarged tonsils can also interfere with sleep.

REM sleep behavior disorder is also common in the PANDAS child and is linked to an inflamed brain.

With REM sleep behavior disorder, your sleeping child might act out his or her dreams. This could involve screaming, shouting, laughing, crying, kicking, punching, or getting out of bed.

Sometimes a solid bedtime routine is enough to improve sleep. This includes:

A regular bedtime, even on weekends
A consistent and pleasant set of activities before bed
A cool, dark, and quiet place to sleep
Zero caffeine, high-energy play, or heavy meals before bedtime
No electronic games, television, or screens before bedtime

Each case and each child is different.

Your child may exhibit a combination of the above symptoms, or variations. You may be certain the symptoms emerged following a strep throat infection, or you may be unsure of exactly when or why they began. Regardless of the trigger, if your child exhibits any of the above symptoms, it’s worth further research to see if PANDAS or PANS might be at the root of your child’s behavior. Once you have a better idea of what you’re dealing with, your child will have a much better chance of recovery.

Would you add anything to this PANDAS symptoms checklist? Share in the comments.

November 16, 2018

The Best Sources of Choline for Brain Development

I’m not going to tell you that choline-rich foods can prevent things like ADHD, autism, or PANDAS – a disorder that you might mistake for autism. But I am going to tell you that getting good sources of choline into your diet while pregnant can certainly reduce the risk of these disorders. Read more below about why choline just might be one of the most important nutrients to focus on during pregnancy, breastfeeding, and early childhood.

Can adequate choline intake during pregnancy really reduce the risk of autism, ADHD, and more?

Yes, choline is THAT important.

But if you take a look at prenatal supplements, you won’t find choline at all. Or, you’ll find only a small amount – far below the recommended 450 mg/day.

What is choline?

Choline is an essential nutrient. Which means that even though the liver makes choline, you must consume sources of choline to meet your body’s daily demand for this vital nutrient.

But what is choline and what does it for you? When you think of choline, think about the brain, the structure of cells, and healthy genes.

Choline:

Helps make acetylcholine, a brain chemical that supports mood, memory, and muscle control.
Supports the growth and myelination – or padding – of brain cells.
Is required to make phospholipids, a major component of all cell membranes.
Acts as a precursor to betaine (also a nutrient found in food, like beets and quinoa), which is a methyl donor and supports the healthy expression of DNA.

Similar to nutrients like folate and B vitamins, choline supplies something called a “methyl donor” that feeds into the methylation cycle.

When it comes to a healthy pregnancy and fetal brain development, a diet rich in methyl donors can shape the expression of your baby’s DNA and affect your baby’s health as an adult.

Besides that, choline and other methyl-donors influence:

Inflammation and your ability to fight infection
Detoxification and the production of an antioxidant called glutathione
Brain chemistry
Energy levels

For example, choline protects the body against inflammation and the effects of inflammation during pregnancy – like preterm labor, intrauterine growth restriction, and preeclampsia.

In animal studies, researchers have found that getting plenty of choline during pregnancy and while nursing can dramatically reduce anxiety and social behavior in offspring that mimics autism.

Likewise, in a follow-up study on mothers supplementing with twice the recommended intake of choline during pregnancy, researchers suggest that choline can safeguard against the development of ADHD, autism, and schizophrenia.

Do you need to worry about choline deficiency?

Choline accumulates in the liver, kidneys, brain, breasts, and placenta. During pregnancy and while breastfeeding, the demand for choline is exceptionally high.

For example, a mother’s body will move large amounts of choline to her baby through the placenta. By some estimates, the level of choline in amniotic fluid is ten times higher than a mother’s blood levels.

Research has found that when choline intake exceeds recommendations, outcomes are better for mother and baby. Animal studies have shown better cognitive function, a healthier placenta, and a better response to fetal stress.

But, there’s a problem.

Almost 90% of folks do not meet the adequate intake amount of choline.

Many prenatal vitamins don’t include choline. And there’s a good chance your doctor won’t tell you to seek out choline-rich foods.

Outright deficiency is rare since the body can make choline. But if you are pregnant or breastfeeding, there’s a good chance that you’re at risk for choline deficiency.

Genetics also matter. Some folks with genetic variants impacting folate metabolism or the production of choline will be at a great risk for choline deficiency.

Signs of choline deficiency

Signs of choline deficiency are directly linked to what choline does in the body and where it’s stored. You may need more choline if you notice:

Low energy
Memory loss
Trouble learning
Mood changes

Fatty liver, metabolic disease, and dementia are also signs that the body needs more choline.

Sources of choline for pregnancy

The best sources of choline are animal-based foods.

During pregnancy, it’s a good idea to include foods high in choline like liver and egg yolks. Bite for bite, liver and eggs have the highest levels of choline along with other methyl donors, like folate and B vitamins.

Try this tasty, easy custard recipe to get your daily dose of choline-rich egg yolks!

In addition, if you’re not a fan of liver (sneaking it into recipes like meatballs and chili makes it way more palatable!), you can take it in supplement form (though keep in mind, you have to take lots of capsules to equal the same nutritional value as eating fresh liver). This is an excellent grassfed desiccated liver supplement.

Remember, methyl donors support the lifelong expression of your baby’s DNA.

Other good sources of choline include:

Poultry
Red meat
Scallops
Salmon
Atlantic cod
Shrimp
Milk, yogurt, and buttermilk
Brussels sprouts
Cauliflower
Peanut butter

How to choose the best choline supplement

When enriching your diet with choline, start with food.

For example, when eating egg yolks, you not only get choline. But you also get carotenoids like lutein and zeaxanthin that support baby’s vision and developing nervous system.

In addition to eating choline-rich foods, it’s a good idea to take extra choline as a supplement during pregnancy and while breastfeeding.

When looking for the best choline supplement, you may come across:

Choline bitartrate
Phosphatidylcholine
Lecithin

Choline bitartrate is a water-soluble free choline that goes directly to the liver. Whereas phosphatidylcholine – found in lecithin – is fat-soluble. Phosphatidylcholine first enters the lymph system and other organs before going to the liver.

These different pathways matter.

For example, there’s evidence that supplementing with phosphatidylcholine can change the choline composition of breast milk and support a more robust immune response in babies when compared to choline bitartrate.

During pregnancy and while breastfeeding, shop for a fat-soluble choline supplement like phosphatidylcholine or lecithin.

Make sure your choline supplement is non-GMO and avoid soy-based supplements. Instead, look for sunflower lecithin, like this one from Seeking Health.

If you haven’t thought about choline until now

Choline just recently popped up on the radar of companies making baby formula and prenatal vitamins. And there’s a good chance that the current daily requirements for choline are too low.

So if you suspect you didn’t get enough choline during pregnancy, be kind to yourself. It’s not too late.

Little ones – especially those on the autism spectrum, with ADHD, or learning disorders – can still benefit from choline-rich foods and supplements.

What are your family’s favorite sources of choline? Share in the comments!

May 22, 2018

Could These Toxic Mold Symptoms Keep You Up At Night?

Your body is equipped to handle occasional mold exposure, thanks to a robust immune system. But if you notice toxic mold symptoms, this may be a sign to call in more detox support. Likewise, you may want to double-check your home for any place where mold can grow. In this post, Stefani shares what toxic mold symptoms to look for and what to do if you suspect toxic mold.

Toxic mold is somewhat of a health niche buzzword these days. We’re seeing it everywhere, and watching as it is blamed for ailments from sinus and respiratory conditions to chronic full-body disorders. There are differing opinions on exactly what type of mold will affect you; is it the stuff you find in the shower, or is it the more sinister fungus that hides behind drywall and invades air ducts?

Exposure to black mold can cause a wide range of health problems for some people, while others may not respond at all. The toxic mold symptoms depend on the individual and how their body reacts.

How is it possible that something so small can cause problems that are so large?

The impact of toxic mold on your health

Naturally found outdoors, mold spores can easily enter your home through doorways, windows, and HVAC systems. Spores in the air can also hitch rides on people and animals, which spreads the mold indoors and compromises shoes, clothes, and furniture.

These spores are always in the air, and they grow and thrive on moisture.

When they land on places where there is water or water damage, they will grow. Mold can grow on anything that is damp and porous, such as paper, cardboard, ceiling tiles, wood, drywall, and carpet.

Even brand-new homes can harbor mold, as builders hastily install water-damaged materials like drywall, which is then covered by plaster and paint, hiding its dirty secret.

But the impact of toxic mold goes beyond the black stuff growing inside damp spaces.

The real culprit is the nanoparticle mycotoxins that are released by the mold spores. These toxins are considered a “natural poison,” and their dangerous effect will vary by the individual.

The severity of health decline due to mycotoxins depends on the duration of the exposure, age, health, and sex, and also genetics, vitamin deficiency, and even infectious disease status. If your body is strong, effects may be minimal.

But if your body is already weak, or fighting something like an autoimmune disease, it could affect you greatly. Those with certain genetic mutations may also be more sensitive to mold.

How do you know if mold is making you sick?

Mycotoxins, specifically trichothecenes, aflatoxins, and ochratoxins, can be found in urine samples of people who have been exposed to a moldy environment.

So if you suspect that your house or workplace is moldy, you can see your doctor for testing.

Yes, you can test for a mold allergy. Allergy testing will show you if you have an allergic response when exposed to mold.

However, a negative mold allergy test does not mean that you won’t feel the noxious effects of toxic mold if you’ve been living or working in a moldy building. Having an allergy to mold just means that you know you’ll have a reaction, and you should do everything you can to avoid being exposed.

One of the best ways to find out if you’re living in a moldy environment is to take a trip. Leave home for a few days. Do you feel better? Do you start feeling sick again upon returning? You just might have a mold problem.

Toxic mold symptoms to look for

Some black mold symptoms can be serious. And many of them mimic chronic Lyme disease. Some of the more common toxic mold symptoms are:

Fatigue and weakness
A headache, light sensitivity
Poor memory, difficult word finding
Difficulty concentrating
Imbalanced hormones and thyroid disorders
Diabetes
Joint pain
Unusual skin sensations, tingling, and numbness
Shortness of breath, sinus congestion or a chronic cough
Appetite swings and blood sugar deregulation
Poor body temperature regulation
Increased urinary frequency or increased thirst
Red eyes or blurred vision
Hot flashes or sweats
Mood swings, depression, anxiety, and other mental or emotional disorders
Sharp pains
Abdominal pain, diarrhea, bloating
Tearing
Disorientation
Metallic taste in the mouth
Static shocks
Vertigo, feeling lightheaded

Many children diagnosed with PANDAS/PANS and even autism spectrum disorders may have an underlying infectious mold problem.

How to manage toxic mold symptoms

The most important part of managing toxic mold symptoms is getting out of the moldy environment. You cannot begin to treat this issue while still continually being exposed to the mold and mycotoxins.

If there has ever been a leak in your home, and you’re experiencing any of the above symptoms, consider that toxic mold could be at the root of your illness, even if there is no visible mold.

If you rent, then get a mold test done and take it to your landlord; they are required to provide a safe place to live or let you out of your lease. If you own the home, then get a mold test done and find out if your homeowner’s insurance will cover remediation.

The best way to test the air in your home is using an ERMI- environmental relative moldiness index – you can pay less than $200 to find out if your home is harboring toxic mold. Order the test here by calling the appropriate customer service number.

If you do have toxic mold:

Get rid of all porous items that were exposed to the moldy environment. This means blankets, pillows, clothes*, papers, books, and furniture that is porous. These cannot be cleaned of the mold and will risk contaminating a new home if you bring them with you.

*You may be able to save some favorite or special clothing items by washing them in this mold-fighting laundry additive.

How long your mold illness will last will greatly depend on your body’s unique abilities to detox.

If your detox pathways are open and functioning properly – or if you make a point of supporting them – then you will be able to rid your body of these toxins much faster than someone whose body isn’t detoxing quickly.

Ways to decrease mold exposure

Fix plumbing leaks and other water problems as soon as possible.
Discard absorbent or porous materials, such as damp ceiling tiles and carpet, if they become moldy. If walls grow mold, the drywall must be cut out and replaced.**
Clean mold off hard surfaces such as solid wood furniture with vinegar and essential oils like clove and tea tree, or this mold solution concentrate and dry completely.
Clean and repair roof gutters regularly.
Keep air conditioning drip pans and drain lines clear.
Keep indoor humidity between 30 and 50 percent, as this minimizes mold growth.
Do not install carpeting in areas where perpetual moisture problems may develop.
Lessen the amount of mold toxins in your home’s air by diffusing clove and tea tree essential oils and installing air purifiers that remove mold. This purifier destroys mold rather than trapping it like most air purifiers.

**If your home has mold, you must hire a professional remediation company to get the mold out. Do not try to remove the mold yourself, as disturbing mold spores will only result in releasing mycotoxins (the poisons released by mold spores) into the air, which will then re-contaminate everything in your home.

Natural remedies for toxic mold exposure

There are several natural ways to try to minimize mold damage in your body.

Use binders, such as bentonite clay, activated charcoal, or even cholestyramine (a prescription medication) to bind the mycotoxins and help them to leave your body.
Do sinus rinses using natural salt and a drop or two of iodine, at least twice a day.
Eat detox foods like beets or this detox salad.
Eat a GAPS or paleo diet; most importantly, eliminate gluten and dairy.
Use an infrared sauna.
Take detox baths.
Remove toxins and help your liver keep up with the toxic load.

Additionally, a high-quality air purifier can be helpful in removing mold spores and mycotoxins from the air, but this only helps if the source of the problem has been remediated.

While toxic mold isn’t a good thing, the severity of response depends on the sensitivity of each person. Make sure you are vigilant about properly repairing leaks in your home, getting rid of damaged materials, and installing high-quality air filters.

Ultimately, if you’re taking care of your body and eating the right foods, your body will be stronger and better able to manage threats like toxic mold.