A little bit of Autism with a little bit of Magic

Welcome

This blog is about a small boy who was diagnosed with Autism at the age of 3.

He and I have embarked on the GAPS Diet as one of his primary treatment options; which excludes all grains, sugars, starches and other foods that damage the gut lining.

Other key interventions that we employ are:

  • Probiotics (to introduce friendly bacteria)
  • Coconut Oil (to starve the bad bacteria)
  • Occupational Therapy
  • Speech Therapy
  • Social Skills Groups, and
  • ABA Therapy (Pivotal Response Treatment).

Due to the growing number of visitors, I also occasionally post about research that I’ve found particularly interesting or relevant…. but if you click on any of the categories below, you can filter content to what’s most interesting or relevant to YOU :)

Fully Recovered at 5!

I just looked at the date of my last post and realised that it’s been nearly 2 months since I updated everyone on our little guy’s progress. Things have been going so well, that there hasn’t been much to say other than ‘he is totally awesome!!’ – and that would get a bit repetitive after a while.

So, onto our latest news….The Little Dude had his fifth birthday last week and, well, I think this picture says it all really…. :)

Image

This is my happy, chatty, inquisitive, affectionate son – being able to enjoy a chocolate mud cake made with lots of wheat and loaded with real cream – and have no reaction to it! Yes, my friends, I think it’s safe to say that his gut is healed and Autism is a thing of the past in our household. (Of course, I wouldn’t let him eat this kind of food every day but it was a special occasion and it’s wonderful that he can now have the odd bit of wheat and dairy without any noticeable affect on his cognitive function). I also continue to be very vigilant with the probiotics… we won’t be giving them up for a very, very long time.

There are plenty of other indicators of his recovery too, some of which are:

  • His kindergarten teacher recently prepared his transition statement for school next year. On all psychological and social measures he is demonstrating school readiness, with ZERO delays or deficits identified! (At the start of this year, he didn’t have the confidence to engage with his peers at kinder at all).
  • His Speech Therapist said that he is now on a par with his peers in terms of speech and language, and actually further ahead than many with his vocabulary.  (At his first assessment, 18 months ago, he was scored as ‘severely’ delayed and, at the time, he was eligible to apply for a specialist Autistic school. He has since been taken off that enrolment list!!)
  • His Occupational Therapist is confident that his sensory processing is typical for a child of his age, and that he shouldn’t have any serious challenges in a classroom environment. (Until around 4 years of age, he would regularly – almost daily – experience such a high degree of sensory overload that he would vomit. He often had his hands cupped over his ears whenever we left the house and was terrified of anything that might emit a loud noise).
  • This weekend just gone, we celebrated his birthday in a big indoor play centre, with LOTS of screaming kids and general chaos. He took it all in his stride, threw himself into all the games, chatted happily to all his friends and had an absolute ball. (This is in contrast to his Big Bro’s party last year, where The Little Dude needed an adult with him at all times, had to wear ear muffs when he was amongst the kids, could barely converse with them, wouldn’t make eye contact with anyone and had to have quiet time in his room every 15 minutes or so).

I could also rave on about how impeccable his memory is, how advanced his drawing, reading, writing, and analytical skills are, how conversant he is with computers and skilled at using them to source information as well as play creative games at a level well beyond his years… He is clearly a very clever kid who, without early interventions, may never have emerged from the fog of Autism.

It’s not my intention here to brag about his accomplishments or his abilities, and I apologise if there is any hint of that tone here – I just want to highlight how ABSOLUTELY CRITICAL it is for parents to access early interventions for their children with Autism; and to point out how much of a difference it can make to their lives.

If your child has a diagnosis, then I particularly encourage you to explore the possibility that a damaged/unhealthy gut could be a major contributing factor. I believe that the changes to The Little Dude’s diet have had the greatest affect on his progress, and allowed him to gain the most benefit from other therapies. There are hundreds of thousands of other parents who will say the same.

This will probably be my last post for a long time, but I’ll leave this here as a resource to any families that may need some direction. If you happen across this blog and you have any specific questions, I’d be happy for you to send them to shanwillalex@gmail.com .

All the very best!

Week 4 & 5 Progress Report

We had back-to-back visitors for the last 2 weeks, so routine got a bit lost & I forgot to check in here. But I did manage to stay on course with our diet.

All good progress to report. The Little Dude has been joining groups very confidently at kinder, and his speech is becoming more and more fluent every day. Specific feedback from his teacher in the last fortnight is that he thoroughly enjoyed acting as a superhero with the other kids, using lots of expression and theatrics that they’ve haven’t seen him use before. His teacher also showed me his drawings, which she said were very advanced for his age.

Tomorrow, we’re off to our first playgroup to meet kids that he’ll be going to school with next year. I’ll try to remember to get some footage afterwards to add to the Videos here.

That’s all the news, sport and weather for this week. (I suppose no news is good news!) Over and out :)

Another compelling video example of why dietary interventions are so, so, soooooo critical for kids to emerge from the fog of Autism.  And another reminder to me not to slack off! All the planning, cooking, researching etc is short term pain in return for life-long gain.

Holly Riley is the parent of a fully recovered autistic child, her son Quinn. Quinn was diagnosed with Autism around the age of two and yet in a just a few short years, through the use of biomedical treatment and traditional autism therapies, Quinn was able to come out of the Autism fog. In this video Holly shares that:

• Quinn was fairly normal in his infancy, until about 1.5 years
• After his first birthday he exhibited unusual behaviors including spinning
• He wasn’t talking, even at two years of age
• Holly figured out that Quinn had Autism after reading a book, and then confirmed the diagnosis with the State Department of Education
• By 2.5 years of age Quinn was receiving speech therapy, occupational therapy and Applied Behavior Analysis
• At 2.5 years his first words were, “up, up, up”
• Holly and her husband researched Autism on the Internet and read what other families did, and one of those things was the removal of dairy and gluten; also called the Gluten Free Casein Free Diet
• They discovered Generation Rescue, a website devoted to helping parents understand biomedical treatment and what therapies help reverse Autism
• There are multiple medical problems with most children who have Autism, including severe gut issues as well as heavy metal poisoning
• Removing dairy and gluten from the diet created major improvement for Quinn, including more eye contact and social interaction
• They found a DAN! Doctor – Defeat Autism Now Doctor
• Quinn had constipation and diarrhea, and the DAN! Doctor treated those medical issues
• Quinn went through various detoxification protocols, called Chelation Therapy, using various forms of chelating agents and delivery methods
• They treated the gut dysbiosis (bad microorganisms in the gut) with anti fungal medications and Probiotics (friendly bacteria for the gut)
• They used mild hyperbaric oxygen therapy
• They gave Methyl B12 injections, and they found that the B12 improved speech, and gave him daily doses of the B12 injections
• They rented a hyperbaric oxygen therapy chamber, which helped Quinn immensely
• They did the specific carbohydrate diet
• They did Network Spinal Analysis and Somato Respiratory Integration
• Quinn had huge developmental spurts after doing the biomedical treatment.
• Quinn started Catholic Kindergarten and excelled immediately. In fact, he scored 98th percentile for speech in first grade whereas at 3.5 years he was in the 2nd percentile (via IBS Testing).

For more biomedical treatment for Autism resources, please visit: http://www.biomedicaltreatmentforautism.com

For anyone looking for Autism Treatment Options, this is a very comprehensive and impressive list.

There is no way that I could (or want to) employ all of these interventions, but here are those that I do for The Little Dude so far. (This list doesn’t include non-dietary interventions such as Occupational Therapy, Speech Therapy, ABA, Social Skills Groups etc).

Rotation and Variety in Diet. The rotation diet helps reduce allergy reactions. However, this makes fewer foods available for use each day. Thus you may tend to serve only one or two foods at each meal. This is not good. If at all possible, it is best to employ a wide variety of foods at each meal. This will help cut down on food allergy reactions. Use different combinations of foods. The body can become sensitive / allergic to specific combinations of foods. By changing the combinations served at each meal, you are adding in more variety.

Mold in Food. Many times it isn’t the food that is causing a reaction, but it is the mold in it. Usually, canned vegetables and fruit have more mold in them than frozen. Frozen food usually has more mold than fresh. So use fresh fruits and vegetables whenever possible. Even condiments like catsup and mustard may have mold. Spices often contain mold.

GF/CF Diet.A gluten-free and casein-free diet has helped many of the autistic. (Gluten is a protein found in grains. Casein is a protein found in milk.) However, the diet needs to be started gradually. Otherwise, the withdrawal symptoms can be too severe. After being on the diet for a while, you can consider adding in DPP IV enzymes. These enzymes have helped many children. Don’t try DPP IV before starting the GF/CF diet. There could be a strong reaction. Even those who have been on the GF/CF diet for months will sometimes experience an initial poor reaction to the DPP IV enzymes. If this poor reaction is too harsh or continues for any length of time, then the use of DPP IV needs to be reevaluated for your child. The DPP IV enzymes can be purchased from Kirkman labs. (http:// www.kirkmanlabs.com) phone (800) 245-8282) or Houston Nutraceuticals (http:// www.kirkmanlabs.com) phone (866) 757-8627). After being on these enzymes for a while, some of the children have been able to tolerate casein and gluten again.

GAPS/SCD diet. The Specific Carbohydrate diet allows the intestines to heal. Only carbohydrates that are easily digested are allowed. No grains or potatoes. Fruits and vegetables are to be peeled. In the beginning, the fruit and vegetables are also to be cooked. Nuts are allowed. However, be careful with the amount and quality of nuts in this diet. Nuts, especially peanuts, can be moldy. A child might also have an allergy to a particular nut. Additionally, most nuts are too high in linoleic fatty acids to be healthy in large quantities. To implement this diet, get the book Breaking the Vicious Cycle by Elaine Gottschall, BA, MSc. Then join one of the Internet discussion groups that will help you implement the diet. http://www.scdiet.org

Soy. This should not be part of the diet. It is too closely related to casein and gluten. Also, the phytoestrogens in soy will put an additional load on the PST enzyme.

MSG (monosodium glutamate), Modified Food Starch and hydrolyzed vegetable protein. These are very hard on a person who has been subjected to yeast overgrowth. Don’t feed them to your child. Coenzyme B6 may help reduce the reaction to these substances.

Chicken. If at all feasible, use organic chicken. Arsenic is legally fed to chickens to get rid of parasites. Some of the arsenic ends up in the meat.

Pork. This may be necessary to add variety to the meals. However, the fat from pork should be avoided. The fat from corn or grass-fed pigs is too high in polyunsaturated oils from the corn and grass that they have been fed. (Pigs are not designed to eat grass like sheep and cattle. Sheep and cattle have bacteria in their stomachs that converts unsaturated fats into saturated fats. Pigs do not. Therefore, the fat profile of pigs resembles that which they have been fed. )

Beef. If possible, use grass-fed beef instead of the normal supermarket beef. There should be less estrogen and pesticides in the fat. If seizures are present, organic chicken may be safer than beef (assuming there isn’t an allergy or sensitivity to chicken).

Coconut oil. The lauric acid found in coconut oil will convert into monolaurin in the intestines. The lauric acid and monolaurin together will kill off some parasites, yeast and viruses (including measles). Give the body a chance to get used to this change. Start with no more than a teaspoon of coconut oil per day for an adult. (Less for a child.) Mix the oil with some fiber (eg a grated carrot) so that some of the oil will make it to the last part of the intestines. When using coconut oil, it can increase metabolic rate. This increases the need for B6 and other B vitamins. More zinc and other minerals may also be needed. Therapeutic doses for an adult are three tablespoons of coconut oil per day. If there is an allergy to coconut, try palm oil instead. This is also high in lauric acid.

Linoleic fatty acids. These are elevated in many of the fatty acid profiles of the autistic. Too much linoleic fatty acid in the diet will decrease IgA, which is needed to protect the intestines. The linoleic fatty acid will also increase free-radicals and will increase yeast growth in the intestines. Oils that contain a high proportion of linoleic fatty acids are safflower, corn, soy, avocado and many of the nut oils. Avoid these. Common sources of excessive dietary linoleic fatty acids are restaurant French fries, oily pizza crusts, and commercial salad dressings. If you are looking for a safe substitute, olive oil has a low percentage of linoleic fatty acids. Don’t be taken in by the advertisements that compare Canola to olive oil. Canola oil is not a good substitute for olive oil. Canola is much higher in oxidized omega-3 oils.

Flax oil. Flax oil has some benefit. It helps to balance out the excessive linoleic fatty acids found in the typical American diet. Perhaps this is why some people feel better with a little flax oil in the diet. However, if we were eating a more natural diet, without all the linoleic fatty acids in it, then there wouldn’t be such a need for the flax oil. Many of the autistic are getting too much flax oil. They test high in linolenic fatty acids, which are the predominate fatty acids found in flax oil. The best strategy is to limit the intake of both linoleic fatty acids (corn oil, safflower oil, soy oil, etc) and limit the intake of linolenic fatty acids (flax oil). Be especially vigilant with kids that have migraines or seizures. They may not tolerate flax oil.

Flax seeds. The mucilage in these helps with bowel regulation. However, there is also a downside to flaxseeds. Flaxseeds contain a chemical that interferes with iodine entering the thyroid gland. Without iodine, the gland cannot produce thyroid hormone. Three tablespoons per day of flaxseeds has been known to cause thyroid goiter. Instead of flaxseeds, consider trying a small amount of prickly pear cactus leaves for their mucilage content. They will help sooth the intestine. However, they also can interfere with the absorption of fats and carbohydrates. So only a small amount is appropriate. You will find prickly pear cactus leaves in many Mexican markets and some ordinary grocery stores. Scrape off the thorns with a knife. You don’t have to remove the green covering. Then chop the leaves and include a little bit when you cook your eggs or other dishes. The leaves have anti-viral properties. Mucilage is not recommended on the SCD diet. So a judgement call will have to be made here. Observations are your best friend.

Fish Liver Oil. Keep cod liver oil or other fish liver oils refrigerated or in the freezer. If it develops a strong fish smell, it has gone bad. The brand Nordic Naturals has a good reputation for freshness and purity. They add in some vitamin E to help keep the oil fresh. (website http://www.nordicnaturals.com and phone 800-662-2544)

Fish liver oil is very important for its fat-soluble vitamins A, D, E, and K. These vitamins reduce inflammation. In particular, enough vitamin A is critical to the health of the intestines. Yet vitamin A may be low due to diarrhea or a measles infection. These deplete the body of vitamin A. Unfortunately, fish liver oils are not always tolerated. If fish liver oil is not tolerated, try separate supplements of these vitamins. You can also get some of these vitamins in a water-soluble form, which may be better tolerated. Like everything else, be prudent in the amount used. Too much or too little of these vitamins is not good. If you are going to use high doses of these vitamins, make sure your doctor monitors this with blood tests, and make sure you are very observant of the changes in your child.

Fish Oil. Keep refrigerated. This isn’t as high in the important fat-soluble vitamins as fish liver oil. However, like fish liver oil, it does help keep platelets from clumping together. Although some fish oil in the diet may be helpful, too much of it can increase free-radical activity and contribute to seizures. It can also increase the permeability of the capillaries and contribute to “leaky gut.” A small amount of fish liver oil may be a better choice than plain fish oil for this reason.

Butter. This has very little casein in it. Ghee, which is clarified butter, would have even less casein. Raw butter, or at least butter from pasture-fed animals is considered the best quality. Butter and ghee are soothing to the intestines.

Household Chemicals. Perfumes, cleaning products and paints contain many irritating chemicals. Baking soda and vinegar are good substitutes for many cleaning products.

Salt. Dr. Mary Megson suggests letting autistics have salt . If there is a G protein defect, three of the channels that remove calcium from the cells are blocked. The only other major means of removing calcium is with salt.

Probiotic supplements can be bacteria, yeast or even transient parasites. These supplements alter the flora of the intestines. Probiotic supplements generally don’t overwhelm the existing intestinal bacteria with their numbers. They change the environment. This shift in environment changes the type of bacteria that are able to survive in the intestines. As the environment changes, the bacteria mixture shifts. Where it ends up doesn’t depend just on the type of probiotic taken. It also depends on what bacteria, viruses, and parasites were there at the start. This is why each person’s reaction to a probiotic is so different. Examples: One person may find that bifidus makes them bloat, and yet another person will adamantly insist that bifidus is the only probiotic that is gentle enough for their system. Another person might say that soil-based bacteria were wonderful at first, but then it seemed to make things worse. Acidophilus may increase D-lactic acid too much in one person, but in another, the acidophilus may replace some harmful bacteria.

Rotation and Variety in Probiotics. The body has an immune response to probiotics. One way to realize the benefit of this immune response is to rub some of the probiotics into the gums. This way, the probiotics don’t have to make it past the stomach acid. Yet, you still get an immune response. (Do this after the teeth have been cleaned.) Another way to get the best immune response is to start and stop the probiotics. It takes 2 to 4 weeks for the body to set up an immune reaction to the probiotics. After introducing the body to the probiotics, stay on them for 2 to 4 weeks. Then take a break for a similar amount of time. Or better yet, every 2 to 4 weeks, change the type of probiotic employed. This will improve the body’s immune response to the probiotics.

Week 3 Progress Report

Just a quick wrap up of Week 3.

I’m doing so well with sticking to the GAPS diet guidelines EXCEPT for bread.  We still have a dependence on one sandwich each day and I’ve gone back to the gluten-free varieties. (Nut-based breads just weren’t cutting it for us, unfortunately).  I’m baking the bread myself, so it has no additives or preservatives, but I do feel guilty that The Little Dude and I are still eating some grains. But it’s early days, and I need to give myself time to transition. Maybe I’ll get the grains eliminated next week… sigh. Still lots of broth, vegies and probiotics though, so we’re mostly tracking really well.

We had a meeting with a new Occupational Therapist to discuss The Little Dude’s sensory issues and what we can do to set him up for success at school next year. Some early ideas are to make sure he has a space in the classroom that he can go to for a little solitary ‘adjustment’ time before the lessons get into full swing; and to give him a seat at the front of the class so that most of the activity is behind him. The Little Dude’s kinder teacher and I have both completed a sensory profile to identify exactly what he has trouble with in all the different areas – audio, visual, kinetic, vestibular, olfactory etc. It’s such a great exercise to go through and I reckon all kids would benefit from it, whether they are on the Autism Spectrum or not. My little man is really lucky that he gets all this extra support in making sure that he can cope in a school classroom next year. I’m meeting with the OT again next week to review the profiles, and then we’ll meet with his kinder teacher to set goals for the rest of this year; and his school teacher to implement strategies for 2013. Very cool.

The Little Dude also had an excellent session with his Speech Therapist, showing marked improvement in the fortnight since his last visit. His Speech Therapist, was really impressed!  He has gone back to constant gnashing of his jaw, though, and I’m not sure if that’s because we’ve reverted to grain bread, or if it’s because we’ve had a few visitors and a lot of unfamiliar activity. Thankfully he no longer grinds his teeth while he’s doing it (I had to knock that on the head early – I really don’t want to be looking at a big dental bill when he’s a teenager!!).

That’s all the news, sport & weather for this week. Oh, if anyone is interested in joining up, I’ve started a directory on Facebook for ABA Therapists/Trainees and families needing to hire someone. There is no such directory anywhere else on the internet, so hopefully this will make it easier for therapists and families to find each other.

ABA Therapy Australia – Facebook Group

We already have over 30 members in under a week. Yay! :)

 

 

 

Probiotics For Autism

The Little Dude and I have been on a high potency probiotic for a week now. This article gives me reassurance that it’s money well spent!

From Autism-Nutrition.com

A medical study on probiotics for autism has proven so successful that the study ‘failed’, according to a New Scientist report on September 9, 2006. The study, by Prof Glenn Gibson at Reading University, UK, found that autistic children vastly improved their concentration and behavior when given probiotics, or ‘friendly bacteria’. It involved 40 autistic children, aged 4 to 8, half of whom were given the probiotic bacteria L. Plantanum while the other half received a dummy ‘probiotic’.

It was supposed to have been a blind study, where the participants were not told who were taking the actual probiotics and who were taking placebos or dummy medicine. As part of this probiotics for autism study, parents were asked to record their children’s mood and behavior in a diary. The results were too obvious. Parents whose autistic children were taking the actual probiotics saw such great improvements in their children’s behavior that they knew their children were taking the real thing.

Thus, problems arose during the ‘crossover’ point of this probiotics for autism study, where the two groups were supposed to switch medicines. Many of the parents whose children were taking the actual probiotics refused to make the switch as they wanted their autistic children to continue their improvement. One parent said it was “heartbreaking” to have to stop their child taking it.

It was really challenging for us and the parents,” said Prof Gibson. “The trial ultimately failed because of the large number of drop-outs.” Due to the high drop-out rate, Prof Gibson was not able to draw any firm, ‘scientific’ conclusion from his probiotics for autism study. Prof Gibson noted, however, that autistic children often suffer bowel conditions and a previous study had found high levels of a “bad” bacteria called clostridia in their gut.

The probiotics for autism study was designed to reduce the levels of clostridia and promote “friendly” bacteria instead, to see what effect this would have. Prof Gibson said the children appeared to show fewer signs of autistic behavior when taking the probiotics supplement, which was given in a powder once a day. “Very subjectively, we asked the parents to fill in diaries about the mood of the children. We got very positive feedback generally,” he said.

Prof Gibson said that certain kinds of clostridia produced neurotoxins, which potentially could be the cause of autism or a contributory factor. However, he said this was speculation. The apparent improvement which the parents observed could also simply be because the children had felt better. “If your gut is not behaving yourself, you feel rough,” Prof Gibson said. The first bacteria in the gut is received from the mother during birth. Later, more bacteria comes from the outside environment, especially from the diet.

By the time a person reaches adulthood, he or she would have about 100 trillion, or 100,000,000,000,000 bacteria in the intestines – which is more than 10 times the number of human cells in the body. Most of the bacteria in the guts are probiotics or “friendly” bacteria but when a person develops an infection, the proportion of harmful bacteria increases. The use of antibiotics destroys both friendly and harmful bacteria. It often causes more harm than good by creating an ‘empty’ environment whereby harmful bacteria, as well as yeast, can multiply more quickly and easily.

In recent years, there has been growing interest in the use of probiotics as a natural way to restore the balance of friendly bacteria in the guts. This has many benefits including enhanced immunity, but also positive effects on mood and behavior. Many parents of autistic children have reported vast improvements in their children’s behavior with the use of probiotic supplements. We recommend a special, ultra-high potency probiotics supplement specially formulated for children with autism.

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