everywomanover29 blog

Food, Mood and Women's Health – Be your healthiest, look and feel great!

adolescents

Alice in Wonderland Syndrome – is there a pyroluria connection?

By Trudy Scott 48 Comments

alice in wonderland syndrome

I first learned about Alice in Wonderland Syndrome (AIWS) during one of the Anxiety Summits. I’m surprised at how many queries I get about this syndrome and the fact that everyone who has reached out also has the social anxiety condition called pyroluria or suspects they have it.

This 2017 paper, Alice in Wonderland Syndrome: A real life version of Lewis Carroll’s novel, describes it as follows:

Alice in Wonderland Syndrome was originally coined by Dr. John Todd in 1955. The syndrome is named after the sensations experienced by the character Alice in Lewis Carroll’s novel Alice’s Adventures in Wonderland. Alice in Wonderland Syndrome consists of metamorphopsia (seeing something in a distorted fashion), bizarre distortions of their body image, and bizarre perceptual distortions of form, size, movement or color. Additionally, patients with Alice in Wonderland Syndrome can experience auditory hallucinations and changes in their perception of time. Currently, there is no known specific cause of Alice in Wonderland Syndrome. However, theories point to infections such as the Epstein-Barr virus, medications such as topiramate and associated migraines.

You can read about all the types of visual and non-visual distortions in this paper: Alice in Wonderland syndrome – A systematic review. This paper also includes a list of conditions in which Alice in Wonderland syndrome has been described in the literature, with infections and migraines being very common. The authors also feel that what we see in the published literature may only be the tip of the iceberg:

Since 1955, no more than 169 case descriptions of AIWS have been published. The literature indicates that this may be only the tip of the iceberg, with many individual symptoms of AIWS being experienced (albeit occasionally and only fleetingly) by up to 30% of adolescents in the general population.

The published case numbers have increased slightly (this paper was published in 2016) and it’s reported that many of the 30% of adolescents with AIWS experience non-clinical symptoms i.e. they are not severe enough to need treatment.

I still find “up to 30% of adolescents in the general population” to be very surprising for a syndrome which was once considered very rare and is frequently misdiagnosed.

Read on to hear from some folks in my community who have reached out and described their AIWS episodes. They all have pyroluria and I’d love to know if there is a possible connection.

Everything either looks really far away but massive or really close up but tiny

Sallie, a mom in my community, shared about her son and what he experienced in the comments section of the pyroluria prevalence and associated conditions blog. During his episodes, everything either looks really far away but massive or really close up but tiny:

I believe he has Alice in Wonderland syndrome. I have taken him to GP’s, pediatricians, optometrists, opthamologists and no one knew what was wrong. I spent about 6 months researching the possibilities myself and came across AIWS. When I showed him some of the journal articles, he was so relieved to finally have an answer. Since then, I have had a gut feeling that pyroluria and AIWS may be linked somehow.

She believes his AIWS may have been triggered by an infection when he was around 6 years of age. He developed sudden onset of vomiting, fever and delirium:

Still to this day, he distinctly remembers this night and recalls (like it was yesterday) not being able to stop looking at his hands because they were changing size and how far away/close up they were.

Once he was old enough to articulate what he was experiencing, he was able to tell me he feels weird, like he needs to go to a pitch-black room and lie down. Sometimes it coincides with a headache.

Everything suddenly appears as if far away then everything either looks really far away but massive or really close up but tiny. He feels dizzy while this happens also. Stress definitely increases the number of AIWS episodes.

Infections are reported as one (of possibly many) root causes of AIWS: “Reported causes include infection (especially with Epstein Barr virus), migraine, epilepsy, depression, and toxic and febrile delirium.”

Infections are common mental health triggers. Strep as a trigger for PANDAS/PANS is a classic example. I blog about Bartonella and sudden-onset adolescent schizophrenia here.

He has pyroluria and stress increases the number of episodes he experiences. My question is this: is there a link between the dumping of zinc and vitamin B6 during these times of stress and episodes of AIWS?

The feeling of being extremely small somatically (or physically), like how you feel when in a football stadium

Mike is a 21 year old male and thinks he may very well have pyroluria based on the questions. He also shares this in the blog comments about his AIWS experiences:

I have experienced sensations similar to Alice in Wonderland Syndrome throughout my life, more so during periods of stress. The feeling of being extremely small somatically (or physically), like how you feel when in a football stadium.

Again, he has pyroluria and his symptoms are worse during periods of stress. Keep in mind that stress makes pyroluria symptoms more intense too.

She usually experiences objects/people smaller than what they are but her more pronounced symptoms are sound distortions

Brenda, another mom in the community, shared this about her daughter’s dreams and PMS on the pyroluria questionnaire blog:

I’m quite certain that my 17 year old daughter has pyroluria. I counted 23 symptoms that she definitely exhibits. Her dream recall is so poor that she insists she doesn’t dream at all. I’m going to start her on zinc, B6 and evening primrose oil right away. Her PMS/premenstrual syndrome is so severe that I had decided to see a gyno to discuss birth control pills. Of course I won’t after listening to your interview with Karla Maree (on the Anxiety Summit).

She also asked if I was familiar with Alice in Wonderland Syndrome and if so do I think it may be connected to pyroluria?  She shares this about her daughter’s AIWS experiences:

My daughter has experienced occasional Lilliputian (trivial or small) hallucinations since childhood.  She usually experiences objects/people smaller than what they are but her more pronounced symptoms are sound distortions. She hears voices/noises (real, not imagined) much louder than they are in reality.

She does not have migraines, has never had mononucleosis or any of the other conditions listed as possible causes of Alice in Wonderland Syndrome. That’s why I’m thinking it may be caused by nutritional deficiencies.

This was my introduction to this syndrome and I appreciate her for asking the question. I did some reading of the research and the word “hallucination” got me thinking that a pyroluria connection was possible. The original work by Dr. Carl Pfeiffer with pyroluria was with individuals with schizophrenia.

However, the second paper mentioned above does state that “AIWS is characterized by perceptual distortions rather than hallucinations or illusions and therefore needs to be distinguished from schizophrenia spectrum and other psychotic disorders.”

We clearly have much to learn and I’m still curious to find out how often these two conditions do overlap – pyroluria/social anxiety and Alice in Wonderland Syndrome.

Resources if you are new to pyroluria

Pyroluria is a social anxiety condition and the physical and emotional symptoms are caused by deficiencies of vitamin B6 and zinc. When you experience high levels of stress, vitamin B6 and zinc will be further depleted, so you may notice worsening symptoms and more anxiety. Here is the symptoms questionnaire and additional resources if you are new to pyroluria:

Have you (or a family member) had episodes of Alice in Wonderland Syndrome? And do episodes coincide with times of added stress?

Do you also suspect pyroluria and has the pyroluria protocol or other nutritional interventions helped to reduce or stop the episodes?

I’d love to also hear anything else you’re willing to share: age at onset, age AIWS stopped, do you suspect an infection as the trigger (or a medication or toxins or something else?), do others in the family have AIWS episodes and how would you describe your AIWS episodes?

Feel free to post any questions here too.

More kids are showing up in ERs with anxiety, depression and other common mental health problems: why isn’t nutritional psychiatry part of the discussion?

By Trudy Scott 23 Comments

This article on NBC news, More kids are showing up in ERs (Emergency Rooms) with mental health crises, reports large increases across the country.

Dr. Anna Abrams, a pediatrician and researcher at Children’s National Medical Center in Washington, finds the numbers both shocking and disheartening.

In the 5-year period from 2012 to 2016, when looking at ER mental health admissions in 45 children’s hospitals, they found the following increases:

  • 48 % in white children
  • 64% in non-Hispanic black children
  • 77% increase in Hispanic children

with about a 55 % increase overall.

Dr. Abrams and her colleagues presented these findings at the American Academy of Pediatrics conference in earlier this month.

Other than the very large increases, there is something else to be concerned about: the researchers say they aren’t sure why we are seeing these increases, speculating it “could be due to the scarcity of mental health professionals who can help children” and “People are also talking more openly about depression, anxiety and other common mental health problems and that may make parents feel more comfortable about seeking help for their children.”

While these are very valid reasons, we really do need to be incorporating nutritional psychiatry (a term coined in 2015) and functional medicine (Dr. Mark Hyman is one of the leaders in functional medicine) into these discussions, studies and conferences. Other than poor diets and nutritional deficiencies we need to be considering stress, exposure to toxins, poor gut health and increasing Wifi exposure, to name a few.

If we look at diet alone, there is so much recent research supporting the connection between diet and mental health. Here are two of many new studies:

Despite some contradictory results, overall there was support for an association between healthy dietary patterns or consumption of a high-quality diet and lower levels of depression or better mental health. Similarly, there was a relationship between unhealthy diet and consumption of low-quality diet and depression or poor mental health.

These data suggest that Iranian adolescent females eating a pro-inflammatory diet…had greater odds of having at least moderate depressive symptoms.

And here are just a few other factors to consider:

How do we get this nutritional psychiatry research and case studies into the hands of those who can change actually policy and the way mental health is addressed? I believe it has to be a grass-roots effort from the bottom up and I have these suggestions:

  • share this blog and the research with your doctor and/or allied health practitioner
  • reach out to study authors, journalists and legislators and share research and success stories like the above, and your own personal results
  • if you’re a practitioner, write blogs like this sharing the good results you see with your clients and patients – with researchers, journalists and legislators
  • share in forums and on social media, and with your neighbors, friends and family
  • comment on blogs like this – with success stories in your family or with clients – so more people get to see what really is working

Every little bit helps! I’d love to hear your ideas too.

The Anxiety Summit – Anxiety in children, adolescents and young adults: an integrative psychiatric approach

By Trudy Scott 23 Comments

Zendi Moldenhauer_Anxiety4

Dr. Zendi Moldenhauer, PhD, NP, RN, is interviewed on the Anxiety Summit by host of the Anxiety Summit, Trudy Scott, Food Mood Expert and Nutritionist, author of The Antianxiety Food Solution.

Anxiety in children, adolescents and young adults: an integrative psychiatric approach

  • The incidence of anxiety in children: official stats and real life numbers
  • How to identify anxiety in children and the IBS-anxiety connection
  • Medication over-prescribing, hidden side-effects and electroshock
  • Food, toxins, gut health, the adrenals and an integrative approach
  • How to use calming theanine and GABA

Here are some gems from our interview:

…anxiety disorders in children are probably the most common psychiatric disorders that start in childhood.  And depending on studies and depending on how anxiety is defined the rates are anything between 10 to 30 percent.  Less common in younger ones and more common in teenagers.  But really the lifetime prevalence of that is a child or teenager developing anxiety sometime up to age 18 is somewhere between 25 and 30 percent. That means one in three to one in four children or adolescents at some point during that time period which is very high.

…when somebody has an anxiety disorder they’re more like to have more than one anxiety disorder because they could have generalized anxiety disorder or social anxiety disorder or separation anxiety or panic disorder.  So it’s really very common like up to 60 percent of patients with anxiety disorder can have another anxiety disorder or depression or ADHD. 

And that’s just sort of more the mental health disorders.  There’s also an incredibly high association between anxiety and IBS.  In fact nearly half to three-quarters of children with IBS can have anxiety.  So there’s a huge relationship between anxiety and other mental health disorders but anxiety and other physical disorders like gut issues or headaches for example.

Here are some of the studies we discuss related to IBS and anxiety:

Dr. Zendi shares that children can’t necessarily identify that they’re anxious: 

Children with anxiety can often not express that they’re anxious.  And if you can imagine a five or six or seven year old they don’t necessarily come to us and say mommy, I feel anxious about whatever is going on in their lives.  So often with children we see it through their behavior.  So children who are either nonverbal at all or haven’t yet developed the emotional language to describe anxiety act out anxiety.  So you might see a child that’s more withdrawn and doesn’t want to participate, doesn’t want to leave the house, doesn’t want to get on the school bus, doesn’t want to go to school, doesn’t want to participate in activities.  There’s a lot of avoidance kind of behavior. 

We discussed this article in Scientific American – The Hidden Harms of Antidepressants: Data about the true risks of suicide and aggression for children and teens taking these drugs have been suppressed

And this one about ECT: American Psychiatric Association Lobbies FDA to Electroshock Children  https://www.cchrint.org/2016/05/05/apa-lobbies-fda-to-electroshockchildren/

We covered organic food and the EWG dirty dozen list for fruits and vegetables

Dr Zendi’s go to nutrient for anxiety and adrenal dysfunction is theanine:

which is an amino acid derivative from green tea and it’s thought to really cross the blood brain barrier and exerts a variety of neurophysiological and even like pharmacological effects on the brain in terms of its anxiolytic and calming effects because it actually upregulates inhibitory neurotransmitters like GABA and possibly modulates serotonin and dopamine in specific areas of the brain.  It actually also increases alpha wave activity.  So children can either sleep better because they’re sleeping at a deeper level or they feel more calm and focused during the day without feeling drowsy so there’s no side effect to L-Theanine which is great. 

Here are two of the theanine papers we discussed:

Here is Dr. Zendi’s digital gift: Practical Tips for Parents of Children and Teens with Anxiety and Irritable Bowel Syndrome (IBS) 

 

If you are not already registered for the Anxiety Summit you can get live access to the speakers of the day here: www.theAnxietySummit.com

Missed this interview or can’t listen live? Or want this and the other great interviews for your learning library? Purchase the MP3s or MP3s + transcripts and listen when it suits you.

You can find your purchasing options here.: Anxiety Summit Season 1, Anxiety Summit Season 2, Anxiety Summit Season 3, and Anxiety Summit Season 4.