IRIS HOUSE Children’s Hospice

“We provide holistic, loving, professional, free community and Hospice based respite, overnight and end of life care for special needs children with life-threatening illness and or life-limiting conditions in the Western Cape. We also provide holistic support for their families.  We train our care team to a high standard and continually strive to train parents on ways to improve their child’s quality of life.  We promote the concept that every life is a gift and valuable no matter how short that life maybe.”

Visit Iris House and support a good cause.

Listen to some stories of the parents and staff of Iris House, click here.

Stimming!

What is it and why do people do it?

This video says it all. Enough said.

Levels of Autism

I have seen this statement a lot on some of the support pages I follow and heard the questions asked amongst parents:

“What level of Autism is your child?”

I almost want to say level 40, but I think it would just cause more confusion.

According to the article in the link below, there are three levels. The level of your child dependant on the amount of support your child needs with day-to-day tasks.

What are the three levels of autism?

There are also other labels like High or Low functioning – again, how much help does your child need with everyday tasks.

My advice: Focus on the strengths of your child and support the places where help is needed.

Please note: The content of this post is my own unless the technical terms are too hard to explain, then the content is copy and paste. I am not a medical professional and thus the post is my point of view. But the content is science-based and credible. Just because it is a new science, does not necessarily make it quackery.

Oxalate Metabolites

Oxalic acid is one of the most acidic organic acids in bodily fluids. This organic acid is derived primarily from fungus (Aspergillus and Penicillium), Candida, or your metabolism. Excessive consumption of high oxalate foods and deficiencies in vitamin B6 can contribute to elevations in oxalic acid.

Many of the foods very high in oxalates are healthy foods. High oxalate foods include spinach, beets, chocolate, peanuts, wheat bran, tea, berries, and nuts (cashews, pecans, and almonds).

Testing oxalate levels are important because high oxalates can be very dangerous. Oxalate crystals have a sharp physical structure that can cause oxidative damage, increase inflammation, cause pain, and damage tissues.

Oxalate crystals may form in joints, blood vessels, muscles, kidneys, lungs, heart, thyroid, eyes, and even the brain. High oxalic acid can hinder the proper function of vital bodily functions, poison the mitochondria, and contribute to kidney stones.

High oxalates in the GI tract may significantly reduce the absorption of essential minerals such as calcium, magnesium, zinc, and more. Oxalates may form in the bones, crowding out bone marrow cells. This can lead to anaemia and immunosuppression. Identifying elevated oxalate metabolites is significant for people with chronic pain, joint issues, kidney stones, and other health issues.

Please note: The content of this post is my own, unless the technical terms is too hard to explain, then the content is copy and pasted. I am not a medical professional and thus the post is my point of view. But the content is science-based and credible. Just because it is a new science, does not necessarily make it quackery. Always consult your doctor first before trying a new treatment.

Do you want to see which genes are involved in influencing Homocysteine? 

MTHFR C677T is the culprit. And if it is homozygous it is the worst.

We all have 2 MTHFR genes, one inherited from each parent. Some people have a genetic mutation in one or both of their MTHFR genes. People with mutations in one MTHFR gene are called “heterozygous” for the MTHFR mutation; if mutations are present in both genes, the person is said to be “homozygous” for the mutation.

The most common MTHFR mutation is called the MTHFR C677T mutation, or the “thermolabile” MTHFR mutation. Another common mutation is called MTHFR A1298C. To have any detrimental effect, mutations must be present in both copies of a person’s MTHFR genes. Having only one mutation, ie, being heterozygous, is, from a medical perspective, irrelevant. Even when 2 MTHFR mutations are present (eg, 2 C677T mutations, or one C677T mutation and one A1298C mutation), not all people will develop high homocysteine levels. Although these mutations do impair the regulation of homocysteine, adequate folate levels essentially “cancel out” this defect.

In an paper published by Dr Joseph Pizzorno, ND, Editor in Chief called “Homocysteine: Friend or Foe“, he list the following:

Genes Directly and Indirectly Involved in Homocysteine Metabolism

We are complex beings, with complex systems.

Alex is currently taking Methyl Care from Metagenic:

This question was asked on an Autism Facebook group:

Q: Anyone else have issues with getting their kids to try new foods?
My son has such a limited range of foods that he will eat. We have been trying for two years to get him interested in veggies, meat, rice and pasta other than 2-minute-noodles. We have tried everything they say you must do: “smell, and one bite”, bite and spit out, try a food for 20 days, stop for 20 days then try again, eating together, eating together at a table, eating without the TV, eating while watching his favourite program, and even have his teacher at the day care try. We have involved him inbthe cooking process to, he will make the food but not eat it.Nothing has worked. He eat mixed textures, so it is not textures. There is no medical issue, he does not gag when he eats. Supper takes almost 2 hours to complete, sometimes we just give up. Sometimes he will eat, play and come back to his food. But dispute being on a limited diet and just above the underweight line he is healthy. But he has very little fat around his important organs, which is not good should he ever get injured.
Any suggestions?

A:  If you’ll allow me, I’d like to help you understand your son’s food aversions better, as an autistic adult who has major sensory issues, because I know that it’s probably incredibly difficult for you to comprehend how things that seem utterly benign to you can be SO PROBLEMATIC for him.

The best analogy I can give you with food is the one I gave the dental hygienist a few months ago when he wanted me to rinse with a blue anti-bacterial solution and I said no. He insisted, and assured me that it didn’t taste bad, and I refused again and explained about my sensory issues. “But it’s just for a moment and then you spit it out,” he said. And that’s when I started to cry.

Because you see, when I looked at that solution, my BRAIN said, “That is NOT FOR HUMAN CONSUMPTION.” I apologize for this extreme wording, but . . . the hygienist might as well have been asking me to sip on a cup of urine. And that is how your son feels when he looks at foods that he cannot eat. His BRAIN is telling him, “Those things are NOT FOR EATING.” They might as well be . . . well, poop. And so it doesn’t matter if Mum and Dad say, “But they’re lovely, and they taste nice, and they are completely healthy and good for you.” Because, not to put too fine a point on it, but . . . if you looked at what was CLEARLY a poop sandwich and someone told you it was lovely and healthy, would that make YOU want to eat it any more than you already did? Probably not. Your brain would STILL be telling you: “NOT FOR EATING!!” with big flashing lights, no matter what they said.

And this is what parents need to understand about autistic kids with sensory issues around food. They are NOT “picky eaters”. They have brains that are showing them something COMPLETELY DIFFERENT from what you are seeing, and it is actually cruel to force them to eat these foods if they’re telling you that they can’t. And yes, we are painfully aware that this can lead to nutritional deficits and gastrointestinal problems–most of us have had both at some point or another throughout our lives. Which is why it is a struggle, and it DEFINITELY is a good idea to talk to your kids about what flavours and textures they DO like (crunchy? soft? bland? tart? sweet?) and try to work within those to introduce what variety you can, and talk to their paediatrician to make sure they’re getting a multivitamin and possibly others to supplement if necessary. It’s awful and definitely NOT the ideal . . . but neither is traumatizing them over food, because the OTHER really common thing in autistic adults is lifelong eating disorders over having been made to eat things we couldn’t cope with.

 Q: I just need to understand, and I am sorry if thing sound blunt or disrespectful, how do you go from eating everything to “I cannot eat this”. When you have had a previous experience with the food item, you know how it tastes and smells and feels and you liked it – all of a sudden it is like you have never eaten it before and not going to try it. What causes that switch?

A: It’s an excellent question! I wish I had a better answer, but I’m guessing that it has to do with the neurological aspect of autism, and the fact that these things are literally “chemical” and filtered through our brain’s synapses–as opposed to being “psychological” like a behaviour.

To be more clear: I think what you’re looking at is the rare, but not completely inexplicable opposite of when a persons brain learns to “get used to something new”; which is that some weird chemical or synaptic switch has flipped in their brain that is suddenly telling them that this smells bad or tastes funny when it didn’t previously . . . but it IS an actual SENSORY PERCEPTION rather than just a behavioural decision.

Again, an example of this happening is that I started a new medication a while ago for my migraines, and it actually affects the chemical makeup of my blood in a manner similar to chemotherapy. My doctor didn’t warn me about this, but suddenly all kinds of foods started to taste bad!! I thought there was something wrong with my tastebuds! Things that I loved–chocolate, Coke, ice cream–suddenly tasted weird and terrible! It turned out that it wasn’t my tastebuds, it was literally a side effect of the medicine and my blood chemistry!! It has totally changed the way I eat (and I still don’t like Coke anymore, LOL).

In your son’s case, I’m assuming he’s not on any new meds, but over time sometimes things just change. Just like you learn to like different foods as you grow up, unfortunately, he may come to dislike some as well–a smell may start to seem unpleasant to him, or a texture, for no real reason except that his body is changing and growing and his brain is doing the same. Sometimes this can work in your favour (I had a sweet tooth as a young child, but by the time I was 5 would have a meltdown if someone even ate a hard candy near me, I was so sensitive to the smell of artificial flavours).

The good news is that he may also start to be interested in other foods as he gets older–it just takes time and patience, and I would for sure let him lead the way, and just make stuff available to him and talk about what YOU like and are eating.

Projected amount of people attending – 100

Thank to Braveheartz MCC for the support

More pictures to follow

On the eve of the new school year, we are excited about what tomorrow will bring…

… to what the rest of the year will bring, and that it would be a good year.

We ended 2017 by saying goodbye to Alex’s teacher, Sindy Furley, as Broad Horizons Academy closed its doors one last time. Alex does not realize it yet, he does not comprehend what has happened yet, but I hope that he will soon learn to realize emotions like loss and sadness. But he has grown a lot, in many ways.

So what is happening tomorrow?

Tomorrow is a new school with new friends and old friends.

Very excited for the new opportunities for Alex to experience.

And then later this year he might even get to go to Big School.

Occupational Therapy

What is the purpose of Occupational Therapy, especially for children?

“Occupational therapy (OT) treatment focuses on helping people with a physical, sensory, or cognitive disability be as independent as possible in all areas of their lives. OT can help kids with various needs improve their cognitive, physical, sensory, and motor skills and enhance their self-esteem and sense of accomplishment.”

Kids Who Might Need Occupational Therapy

According to the AOTA, kids with these medical problems might benefit from OT:

• birth injuries or birth defects
• sensory processing disorders
• traumatic injuries (brain or spinal cord)
• learning problems
• autism/pervasive developmental disorders
• juvenile rheumatoid arthritis
• mental health or behavioral problems
• broken bones or other orthopedic injuries
• developmental delays
• post-surgical conditions
• burns
• spina bifida
• traumatic amputations
• cancer
• severe hand injuries
• multiple sclerosis, cerebral palsy, and other chronic illnesses

Occupational therapists might:

• help kids work on fine motor skills so they can grasp and release toys and develop good handwriting skills
• address hand–eye coordination to improve kids’ play and school skills (hitting a target, batting a ball, copying from a blackboard, etc.)
• help kids with severe developmental delays learn basic tasks (such as bathing, getting dressed, brushing their teeth, and feeding themselves)
• help kids with behavioral disorders maintain positive behaviors in all environments (e.g., instead of hitting others or acting out, using positive ways to deal with anger, such as writing about feelings or participating in a physical activity)
• teach kids with physical disabilities the coordination skills needed to feed themselves, use a computer, or increase the speed and legibility of their handwriting
• evaluate a child’s need for specialized equipment, such as wheelchairs, splints, bathing equipment, dressing devices, or communication aids
• work with kids who have sensory and attention issues to improve focus and social skills

We took our son to Sensory Kidszone to find out what his sensory needs are and to help with some behavioural issues.

You can watch the video here.

For the report, click here.

Please note: The content of this post is my own, unless the technical terms is too hard to explain, then the content is copy and pasted. I am not a medical professional and thus the post is my point of view. But the content is science-based and credible. Just because it is a new science, does not necessarily make it quackery. 

Say What?

Is it not enough that you are not methylating properly, now you need to worry about under or over methylating? What does that mean? But there is more. What about Copper overload, Pyrrole Disorder, Glucose dyscontrol and Malabsorption?

Before running to the pharmacy to pick up a B-vitamins supplement, you have to understand that if you have the MTHFR mutation that you can be either over or under methylated and the B-vitamins supplement will not help you much.

OVER methylation

Overmethylation (Histapenia): Too much methyl (a carbon group with three hydrogen atoms). This causes an overproduction of serotonin, norepinephrine, and dopamine in the brain.  In many cases, high serotonin levels can cause psychological problems including reduced motivation, reduced libido, weight gain, and confusion. If you are overmethylated you might also have low levels of histamine, and likely a low count of absolute basophils. Additionally you may discover high levels of copper, but low presence of zinc and histamine throughout the body.

Overmethylation Characteristics

Below is a list of possible characteristics that you may experience during overmethylation. Understand that overmethylation will not necessarily cause every single symptom on the list and that severity of each symptom is highly subject to individual variation.

• ADHD: Those who are overmethylators may have attention deficits and may have been previously diagnosed with ADHD.
• Anxiety: In some cases, the overmethylation can lead to increased levels of anxiety and susceptibility to panic attacks.
• Artistic: Some sources have suggested a link between artistic and musical pursuits and overmethylation. Whether this is accurate is subject to debate.
• Depression: Those with overmethylation may become depressed as a result of high levels of serotonin, lack of motivation, and accomplishment.
• Dry skin: It has also been speculated that in those who are overmethylated tend to be more susceptible to bouts of dry skin.
• Food sensitivities: If you are an overmethylator, you may notice that you are highly sensitive to certain foods and/or chemicals.
• Frustration: Another sign among overmethylators is rampant frustration or becoming easily frustrated in seemingly benign situations.
• High pain threshold: Unlike those who are poor methylators, overmethylation is associated with a higher pain tolerance.
• Low libido: Another symptom of overmethylation is that of a decreased sex drive. They may be considerably less interested in sex than average.
• Low motivation: The general tendency among overmethylators is that of deficient achievement in workplace or competitive settings. This is often a direct result of the motivational deficit that may be a byproduct of overmethylation.
• Nervousness: This ties into the generalized anxiety that a person may experience as a result of the overmethylation.
• Obsessions: Some have suggested that individuals with overmethylation may demonstrate clear obsessions, but they aren’t usually accompanied by compulsions.
• Overweight: Those who are overmethylated may be more likely to pack on weight in part due to motivational deficits and depression.
• Paranoia: Among those who are strongly affected by overmethylation, paranoid thoughts, and possibly auditory hallucinations may emerge.
• Restless legs: Another possible symptom that you may experience if you’re dealing with too much methylation is restless legs.
• Self-imposed isolation: Those who isolate themselves from others may do so in part as a result of depression and or anxiety from overmethylation.
• Self-harm: Researchers believe that among those who commit acts of self-harm and mutilation, overmethylation tends to occur.
• Sleep disorders: Those with sleep problems may be more likely to have overmethylation.

Supplements for Overmethylation

The goal is to gradually reduce the amount of methylation that occurs with targeted nutritional interventions. Below are some supplements that someone may take if they are overmethylated:

• DMAE
• Folic Acid (Folate) or Folinic acid
• Niacinamide (Vitamin B3)
• Omega-3 fatty acids
• Vitamin B6
• Vitamin C
• Vitamin E
• Zinc

Medication Outcomes

If you are taking a medication and have a mutation of MTHFR that leads to overmethylation, below are some likely reactions.

• Antihistamines: Since you already have low levels of histamine, you are going to respond poorly to any antihistamine drug. People who are overmethylated tend to have less allergic responses than usual as a result of the low endogenous histamine.
• Benzodiazepines: Favorable responses have been noted among those with overmethylation to taking benzodiazepines.
• Lithium: The mood stabilizing agent Lithium has also been thought to yield noticeable improvement among those who are overmethylated.
• Oestrogen therapy: Should you engage in oestrogen therapy as an overmethylator, you are likely to experience an adverse reaction.
• SAM-e: This supplement should be avoided by any individual that is dealing with overmethylation. Adverse reactions are likely to occur as this will further increase methylation.
• SSRIs: In general, people who are overmethylated already have high levels of serotonin and don’t require an SSRI. Further increasing serotonin levels may be problematic and may yield unwanted side effects or adverse reactions.
• Many persons who are over methylated might have adverse reaction to serotonin-enhancing substances such as Prozac, Paxil, Zoloft, St. John’s Wort, methionine.

Under Methylation

Undermethylation (Histadelia): Too little methyl (a carbon group with three hydrogen atoms). Essentially they have low levels of SAM-e, which donates methyl. This can lead to perfectionism, high accomplishment, and high achievement. Now why would this be problematic? This can lead to low levels of serotonin, making them susceptible to depression.

The undermethylation can lead to a number of deficiencies in nutrients throughout the body: High histamine, low zinc, low copper, high Basophil count, high homocysteine and high heavy metals.

Undermethylation characteristic

Keep in mind that if you are suffering from undermethylation, you may not experience every symptom on this list. There are different genetic polymorphisms of the MTHFR gene as well as other factors that may dictate your experience. Below is a collective list of symptoms that people with undermethylation tend to exhibit.

• Addictions: Those who are considered undermethylators may be more likely to battle addictions and/or have addictive personalities.
• Competitive: It is believed that many undermethylators are extremely competitive in sports, business, and other facets of life. Competition is a notable signal that a person may not have a sufficient methylation process.
• Concentrative endurance: Some individuals who are suffering from undermethylation may have a difficult time maintaining focus for prolonged periods of time. In other words, their concentration ability may wane quicker than average.
• Delusions: Certain individuals that fall into the undermethylation diagnosis may experience delusions or beliefs that aren’t based in reality. While these generally are not severe, then can interfere with the accuracy of a person’s perception of reality.
• Headaches: Some researchers believe that undermethylation may cause physical symptoms such as headaches.
• High achievement: One characteristic (rather than symptom) of people with low levels of methylation is that of accomplishment and achievement. Many individuals considered top athletes, CEOs, and professionals may be fueled in part by undermethylation.
• High libido: A person may be highly interested in sex and/or have a higher than average “drive” compared to others.
• Obsessive compulsive: Undermethylation may provoke symptoms of OCD or other obsessive tendencies. In fact, someone may actually get diagnosed with obsessive-compulsive disorder as a result of their methylation deficiency.
• Oppositional defiance: Another common finding is that those displaying signs of oppositional defiant disorder(ODD) tend to also have undermethylation. While this isn’t a very common diagnosis, it is thought to be related to undermethylation.
• Inner tension: While a person who is an undermethylator may appear to exhibit a calm demeanor, they may be filled with inner tension.
• Low pain tolerance: Individuals with undermethylation tend to have a poor tolerance to any sort of pain.
• Perfectionism: Another trait of undermethylators is that of perfectionism. They aren’t satisfied unless tasks are completed in accordance to their specific methodology. They may be intolerant to less-than-perfect outcomes.
• Phobias: Certain phobias or irrational fears may be caused in part by undermethylation.
• Ritualistic behavior: Those who are undermethylated may engaged in ritualistic behavior with rigid schedules. They may have specific daily rituals to which they must adhere.
• Seasonal allergies: It has also been suggested that allergies may be stronger among undermethylators, particularly during seasonal transitions. This may be related to naturally elevated levels of histamine, leading to more pronounced reactions.
• Self-motivated: A person who is undermethylated may be highly self-motivated in both school and work functions. They may not need any outside inspiration or encouragement to complete their work, they are fuelled internally by themselves.
• Social isolation: Some individuals with undermethylation may isolate themselves from others and prefer to be left alone, especially during the completion of work.
• Strong willed: Another characteristic that is found among those who are undermethylated is that of a strong will.

Undermethylation Treatment

Generally treatment doesn’t yield drastic improvement overnight, and in some cases it can take 8 to 12 months before a person feels noticeably better. However, it is also important to realize that nutritional intervention can be highly effective and successful over the long-term.

Since undermethylation results in low levels of calcium, magnesium, methionine, and Vitamin B6 – it’s important to consider these for supplementation. Additionally it may be important to avoid folic acid as levels may be abnormally high throughout neurons. Correcting nutritional imbalances is considered an important step towards improving undermethylation symptoms.

Supplements for Undermethylation

Work with a professional to determine what quantities of vitamins and/or “stack” you should be taking.

• Choline
• Calcium
• Magnesium
• Methionine
• Omega-3 fatty acids
• SAM-e
• Vitamin B12 (methyl B12)
• Vitamin C

Medication Outcomes

If you plan on taking a medication, some researchers have noted that outcomes among individuals with undermethylation are considered specific based on the type of drug utilized.

• Antihistamines: Since those with undermethylation tend to have high levels of histamine, using an antihistamine may result in favorable effects.
• Benzodiazepines: People taking benzodiazepines like Xanax tend to have unfavorable responses if they are suffering from undermethylation.
• SSRIs: Those dealing with undermethylation tend to respond well to selective-serotonin reuptake inhibitors. These are antidepressant drugs that specifically increase the amount of extracellular serotonin. These are considered helpful among undermethylators because they have low levels of serotonin.
• Vitamin B Complex: Those taking Vitamin B Complex may experience adverse effects. This is because the person already has high levels of folic acid (Vitamin B9) and the complex serves to further elevate it.
• These undermethylated persons may benefit nicely from Paxil, Zoloft, and other serotonin-enhancing medications, although nasty side effects are common.  A more natural approach is to directly correct the underlying problem using SAMe, methionine, calcium, magnesium, amongst others.  Although most undermethylated patients thrive on folates, supplements of folates must be avoided for patients whose problems are dominated by low activity at serotonin receptors.  Folic acid, folinic acid, and methylfolate all reduce serotonin/dopamine neurotransmission by an epigenetic mechanism, and this effect overwhelms the folate benefits of improved methylation and serotonin synthesis.

Enzyme polymorphisms (genes)

• MTHFR
• COMPT

For a more comprehensive list of Over and under methylation characteristics click here.

Click on the link for more on Methylation: https://www.youtube.com/watch?v=W14kkO61Ano&t=2741s