Rett syndrome nutrition & the big second brain (your tummy)

Good nutrition is the building block of a healthy brain.

New research is telling us really important stuff about the gut and Rett syndrome nutrition.

How it is now seen as our second brain and also as a window to our brain health.

The army in your tummy - Rett syndrome nutritionOur guts are incredible things; they’re also one of the most important cogs in how our body interacts with our brain. 

[The second brain in our stomachs – BBC News]

New studies have shown that tummy health helps mind health.

We have identified that gut health is even responsible for our behaviour. 

[Anxiety and depression caused by stress linked to gut bacteria living in intestines, scientists find | The Independent]

It should be no surprise then how Rett syndrome affects the tummy health of girls (and boys); it should also be no surprise that our scientists and researchers are identifying the gut as an avenue to treatment.

What are the issues that are affected by tummy health?


One of the leading issues in Rett syndrome is anxiety, which has been linked to the health of your gut by recent studies. Not just anxiety, but depression.


I think this paints a picture of behaviour for many of the girls, who seem to cycle through bouts of depression.  


Your gut health also aids your immunity, so taking care of nutrition is like a multi pronged attack on Rett and a great starting point to ensure your child is healthy and happy.


As previously pointed out, we have found direct correlations between Neurohealth and gut health. As Rett syndrome predominantly affects Neurohealth, this is seen an important target.

Studies have shown that good guts affect BDNF (Brain-Derived Neurotrophic Factor). Where have I heard about that? Well BDNF is intrinsically tied to MeCP2 and plays a key role in neuronal development.

Why’s he telling me this?

Well quite simply because a good tummy affects BDNF too.

[Prebiotic feeding elevates central brain derived neurotrophic factor, N-methyl-d-aspartate receptor subunits and d-serine]

A living approach to gut health

We have known for some time that nutrition is vital to the health of the girls, but how much more should we be focussing on this method as a direct and possible treatment?

Things as simple as modifying gut bacteria could alleviate and reduce stress in the girls.

[Link Found Between Gut Bacteria And Depression | IFLScience]

What can we do to establish the best possible balance for good bacteria in the gut of our girls?

Probiotics or Prebiotics

Probiotics are the “gut flora”(good tummy bugs) that live inside you. Prebiotics are carbohydrates that humans cannot digest, but are like fertilizer for probiotics. Prebiotics help the gut flora that are already there grow.

Introducing probiotics and prebiotics into a diet is something every parent can do, both are available off the shelves.

This is something that is achievable for every parent of a child with Rett syndrome; nutrition is something you should be in control of. Speaking to your doctors to get you, and her (him) in front of nutritionists should be a reasonable request.

It’s also something that collectively Rett syndrome organisations should be targeting.

Why do I say this? Because it’s achievable, it’s low cost and it’s a valuable resource.

Let us target the things we can change right now, those little percentages that keep our children healthier. Little percentages that accumulate into effective encouraging treatments. Treatments that keep your child healthier.

So what else does this mean?

It’s not just good nutrition that helps, it also gives us treatment targets.

What else stimulates BDNF?

Let me just reiterate here, please never self prescribe medication. 

There is a reason drugs go into prolonged studies, so I’m going to avoid talking about drugs that are not officially in a Rett related study. 

There are however other things that stimulate BDNF.

Social enrichment

One of the best ways to stimulate BDNF is through social engagement, enrich them socially, involve them and encourage them. This also has a positive effect on their anxiety issues.

Here are some links :

• [Early social enrichment shapes social behavior and nerve growth factor and brain-derived neurotrophic factor levels in the adult mouse brain.  – PubMed – NCBI]

• [Early social enrichment augments adult hippocampal BDNF levels and survival of BrdU-positive cells while increasing anxiety- and “depression”-like …  – PubMed – NCBI]

How Ketamine helps

What I found interesting in some recent studies, is their is research into using Ketamine to help with anxiety and depression.

[Ketamine tested as severe depression treatment – NHSUK]

I know someone who’s spent a lot of time with Ketamine, and not for all the reasons above, but as a pain killer. I also know that she is incredibly responsive for a child with Rett syndrome, her tracking is amazing, her hand control is incredible. 

I’m not saying this is because of Ketamine, but I do wonder if Ketamine has an affect on her, because we noticed changes once she went onto it. She was also part of the initial discussion that got the Ketamine study started.

So what’s that got to do with Rett syndrome?

Well, quite a bit actually.  Ketamine is not only used as a pain killer, it’s not only being tested as a solution to depression and anxiety.

Ketamine has also been shown to stimulate dendritic growth, which is crucial to brain development, as well as stimulate BDNF expression and translation of synaptic proteins.

That’s a long way of saying that Ketamine has a positive affect on things that Rett syndrome alters.

Here is a more information about Ketamine possible affect on Rett syndrome. [Could Low-Dose Ketamine Help Patients with Rett Syndrome? – Consult QD]

So what other good stuff you got for me?

Well lots actually, turns out there are lots of things that affect BDNF.

Sunlight (Vitamin D)

Yeppers, get her in the sun and catch some rays.  A study in the Netherlands found that BDNF increased during summer and spring, researchers discovered it was a direct correlation to how much time they spent in the sun.

[Serum BDNF Concentrations Show Strong Seasonal Variation and Correlations with the Amount of Ambient Sunlight]


Another things we are looking into in Rett syndrome that affects BDNF is Ampakines. Ampakines have had positive results in studies of mice with neurodegenrative diseases.

Ampakines are a class of compounds (drugs) that interact with your glutamatergic AMPA receptor. The easiest way I can describe it is like the telephone line between two telephones. It helps the messages get through.


Crystamine is a drug used to elevate BDNF in other neurodegenerative diseases  by stimulating the vesicles (fluid-filled pockets) that contain BDNF. 

So what is Crystamine? You probably know it as Vitamin B12. Another space that is being targeted for a possible positive result.

[A Study of the Treatment of Rett Syndrome With Folate and Betaine]

SSRI’s (Selective serotonin reuptake inhibitors)

These are typically used as antidepressants, and are currently prescribed to Rett syndrome patients. In the current case they are used to try and control self-abusive behaviour, such hair hair pulling, biting and head banging.

There has already been a study into using antidepressants as potential treatment for Rett syndrome.

[Lithium and antidepressants potential treatments in Rett syndrome]

Omega-3 Fatty Acids

Remember fish oils? 

Well it turns out there’s some sense in that, as these essential fatty acids have something called DHA (Docosahexaenoic acid) responsible for increasing levels of BDNF in in rodents with traumatic brain injuries.

[Dietary omega-3 fatty acids normalize BDNF levels, reduce oxidative damage, and counteract learning disability after traumatic brain injury in rats.  – PubMed – NCBI]

[Therapeutic use of omega-3 fatty acids in bipolar disorder.  – PubMed – NCBI]


There were more things that contributed to an increase in BDNF. Access to refined sugars and saturated fats are BAD.

This is an issue for people who are trying to get their child to carry as much weight as possible, but the truth of it is that these two things are not only smashing those good guys in your tummy, but their are also directly impacting efforts of the body to increase BDNF.

So what’s all this mean?

This is a long journey of potential treatments in the fight against Rett syndrome, it’s also something we can directly target as parents and revolutionaries in the Rett resistance.

So get that good stuff in your tummy, go probiotic and prebiotic 😉 Get to your nutritionist/dietician/nutritional therapist and get a strategy going.

Good nutrition is the building block of a healthy brain.

It’s also something you can affect.

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