Getting Some Sleep! Solving the Night-Waking Problem in Autism

I have tried really hard to erase from my mind the painful memories of years of being woken up in the middle of the night by my son who was born with autism.  He would wake multiple times during the night, every night, with the first time usually being about 1:30-2:00 a.m. – just shortly after I had just fallen asleep.  Three years later, my body is still paying for three years of very little sleep!  I believe it is so important to get to the root of night-waking for our autistic children – so their growing bodies can get the sleep they need, and so that we parents can be rested to take care of them!

Sumio8 submitted the following question regarding night-waking in autism:

“What a wonderful website! Thanks for the resources and invaluable information! Your dedication really is helpful to so many people..I just had to say that.

I do have a question. We recently used Culturelle “dairy free” version and for over a month couldn’t figure out why our son was nightwaking (2am till 6am). We have been GFCF for months and he was exhibiting the same behavior prior to going CF. Unbeknownst to me my friend told me her DAN said it STILL contained casein. I came across a website that claims it has trace amounts (15ppm whatever that means). The day we removed Culturelle he slept through the night (just like when we removed his milk). I find that to be more than coincidental. When I emailed Culturelle the rep reassured me that they send it out to a another company for inspection etc. but I’m not buying it. 4 days later my son is STILL sleeping through the night and the past month he exhibited the same “caseo morphine” high. Thank goodness my friend enlightened me..It really bothers me they are denying it because beyond how it affects my son neurologically, he’s highly allergic to it and has broken out in hives.

Is there a good probiotic you could recommend that is indeed casein free?? Seems like many still have trace amounts.”

Hi Sumio8,  I am glad you found information here helpful!  I am so sorry to hear the problem your son had recently. 

We have never used the Culturelle product (dairy-based or dairy-free), so I cannot comment from personal experience on that particular product.  I would say that any product that causes your son to break out in hives is definitely NOT a product that is appropriate for him!  He is obviously allergic to it.  Certainly, casein intolerance and/or an allergy to a food or product can cause night waking.  Again, I cannot say whether the dairy-free Culturelle contains any casein because we have never used the product. 

We have, however, dealt with night-waking episodes, so I can share from my experience with that. I have found that there can be many causes of night-waking.  For example – gluten and casein intolerance, allergies (both food allergies, airborne allergies, allergies to mattress materials and materials in the room), serotonin and melatonin imbalances, yeast overgrowth, bacterial overgrowth, elevated ammonia levels, going to bed too late, toxicity of the body, pinworms, and gastric problems can all cause night waking.  There could also be several of these issues working together to cause the night waking. 

For instance, we linked my son’s night-waking to serious bacterial and fungal intestinal overgrowth, which produced toxic metabolic byproducts (including elevated ammonia levels).  When we aggressively treated the bacterial and fungal overgrowth, he was able to sleep through the night.  One caveat – his nights became significantly worse for about two weeks before they got better.  As the harmful bacteria and yeast died off, his sleep became severely disrupted for a short time.  We used activated charcoal (several hours apart from any supplements or medicines!!!) to help reduce the symptoms.  We worked with a DAN/Yasko MD through this process.  If you are not working with a doctor with this type of training, it may be better to deal with bacterial and yeast overgrowth in a slow but steady way, to reduce the die-off symptoms.   
We have been very happy with the probiotic we chose for daily use – it is by Neocore Spectrum – called GI Maximizer.  You can order online at www.neocorespectrum.com  They are completely gluten-free and casein-free (and also free from FOS, which can be extremely irritating to those with GI issues in autism).  I find that Neocore Spectrum’s 25 + BILLION capsules are actually more effective than another product we had used that was labeled as 75 billion. 

One last thought – after three years of my son waking up multiple times every night, I really needed to know WHY he was waking up in the middle of the night.  At that point, I really prayed that the Lord would give me specific direction on what was at the root of the problem and what to take for it.  I am so thankful for the answers I received!  I pray for guidance for you and for health and healing for your entire family! 

Be blessed!
“For everyone who asks, receives, and he who seeks, finds, and to him who knocks, it shall be opened.”  Luke 11:10 NASB

Making Progress in Autism – Probiotics and more!

Thanks Alex for the following question about progress through probiotics: 

My 5 yr old son is on the gf/cf/sf diet and I’m just about to order lots of supplements online. After reading your Press On! it sounded like us, however we haven’t started any probiotic yet. My son’s “disagreeableness” (made sense to me!) is pretty bad right now, without any supplement. How long roughly was the “rough part” for you?

Did the new line of probiotics that you mentioned come out yet?

Thanks!
Alex

Alex,

Yes, the probiotic product (and other products we use) have been released and they are fantastic! The company is Neocore Spectrum, and the website is http://www.neocorespectrum.com. The probiotic is very high-potency with 25 + Billion CFUs (colony forming units). It is gluten-free, casein-free and also free from FOS (a prebiotic in many probiotics that feeds bad bacteria). It also is formulated so that the probiotics survive the stomach acid and can actually colonize in the intestines – where they can do their job.

We also use all the products offered by Neocore Spectrum – the multivitamin/multimineral, enzymes (both chewable and capsules), omega-3 fish oil (small gelcaps), liquid antioxidant extracts (my sons LOVE the Blueberry), and the Silver Renew gel. The Silver Renew skin gel has been wonderful for us – we use it on bug bites, skin irritations, eczema, and even used it on a viral rash called Molluscum. I recently had some horrible eczema flare-ups on my arms and used the Silver Renew and saw relief within minutes, and complete resolution in only a few days.

The thing I love best about the Neocore Spectrum products is that I really feel I am getting a value for my money. For example, the multivitamin/multimineral is very complete and is reasonably priced. It is well-suited for our autistic children. (I use the products for myself too!) It is free from copper and iron, it uses many natural forms of vitamins. It also contains the active forms of folic acid, vitamin B 12, B-6 (it contains P-5-P), which the information published by the DAN! doctors and the Autism Research Institute shows that autistic children have difficulties processing these vitamins and need the more active forms. There are even bioflavonoids for extra antioxidant protection. A multi like this is truly hard to come by!
Alex, to answer your question as to how long the most difficult part lasted – I must say that it took several months of working on the yeast imbalance before I noticed that my son’s behavior and mood improved and the “disagreeableness” began fading away.

As I mentioned, he was so toxic when we began the probiotic supplementation, that we saw his behavior worsen for the first few weeks. He even had some nights of rough sleep where he would kick and scream out at night. I now know that was the bacterial and yeast die-off. Now I know that activated charcoal pills can help alleviate some of the die-off reactions. (Make sure not to take the activated charcoal within 2 hours of eating or taking any supplements.) Also, it is important to stay away from sugar – even excessive fruit sugar (ex. we avoid dried fruit) and moldy foods. It’s also important to work on the overall health of the body – supplying the vitamins, minerals, essential fatty acids, and nutrition that the body, and specifically the immune system needs.

It is a lot of effort, but I must say it is worth it! Tonight as I was giving my boys a bath, I was thinking back a couple of years. I was remembering how difficult it was back then to give my son a bath. He would throw a constant fit during bath time – he didn’t like the water over his head, he didn’t like the smell of the soap (which was totally unscented!), he didn’t like the towel, he didn’t want his hair dried, and on and on! By the time I got him to bed, I would be in tears! Now our bath and bedtime routines are a joy! My boys hug and kiss each other goodnight and say “I love you!” to each other and to me! It is what I hoped, worked, and prayed for, and I am truly thankful! I pray for that same joy for you!

Blessings!

Article by David Kirby “Government Concedes Vaccine-Autism Case in Federal Court – Now What?”

Unfortunately, it seems federal law has virtually eliminated the right of children injured by vaccines to have their cases heard by a jury of their peers.  Instead, vaccine injury cases are heard before a federal Special Masters court, commonly referred to as “Vaccine Court.”  Recently, in one vaccine-autism case, the government conceded a causal link between a vaccine and autism.  David Kirby, author of Evidence of Harm – Mercury in Vaccines and the Autism Epidemic, A Medical Controversy (St. Martins Press 2005) gives a thought-provoking account of this concession in the following article which is posted here, by permission, in its entirety:     

Government Concedes Vaccine-Autism Case in Federal Court – Now What?

Posted February 25, 2008 | 12:42 PM (EST)

By David Kirby The Huffington Post

http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html

After years of insisting there is no evidence to link vaccines with the onset of autism spectrum disorder (ASD), the US government has quietly conceded a vaccine-autism case in the Court of Federal Claims.

The unprecedented concession was filed on November 9, and sealed to protect the plaintiff’s identify. It was obtained through individuals unrelated to the case.

The claim, one of 4,900 autism cases currently pending in Federal “Vaccine Court,” was conceded by US Assistant Attorney General Peter Keisler and other Justice Department officials, on behalf of the Department of Health and Human Services, the “defendant” in all Vaccine Court cases.

The child’s claim against the government — that mercury-containing vaccines were the cause of her autism — was supposed to be one of three “test cases” for the thimerosal-autism theory currently under consideration by a three-member panel of Special Masters, the presiding justices in Federal Claims Court.

Keisler wrote that medical personnel at the HHS Division of Vaccine Injury Compensation (DVIC) had reviewed the case and “concluded that compensation is appropriate.”

The doctors conceded that the child was healthy and developing normally until her 18-month well-baby visit, when she received vaccinations against nine different diseases all at once (two contained thimerosal).

Days later, the girl began spiraling downward into a cascade of illnesses and setbacks that, within months, presented as symptoms of autism, including: No response to verbal direction; loss of language skills; no eye contact; loss of “relatedness;” insomnia; incessant screaming; arching; and “watching the florescent lights repeatedly during examination.”

Seven months after vaccination, the patient was diagnosed by Dr. Andrew Zimmerman, a leading neurologist at the Kennedy Krieger Children’s Hospital Neurology Clinic, with “regressive encephalopathy (brain disease) with features consistent with autistic spectrum disorder, following normal development.” The girl also met the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) official criteria for autism.

In its written concession, the government said the child had a pre-existing mitochondrial disorder that was “aggravated” by her shots, and which ultimately resulted in an ASD diagnosis.

“The vaccinations received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder,” the concession says, “which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of ASD.”

This statement is good news for the girl and her family, who will now be compensated for the lifetime of care she will require. But its implications for the larger vaccine-autism debate, and for public health policy in general, are not as certain.

In fact, the government’s concession seems to raise more questions than it answers.

1) Is there a connection between vaccines, mitochondrial disorders and a diagnosis of autism, at least in some cases?

Mitochondria, you may recall from biology class, are the little powerhouses within cells that convert food into electrical energy, partly through a complex process called “oxidative phosphorylation.” If this process is impaired, mitochondrial disorder will ensue.

The child in this case had several markers for Mt disease, which was confirmed by muscle biopsy. Mt disease is often marked by lethargy, poor muscle tone, poor food digestion and bowel problems, something found in many children diagnosed with autism.

But mitochondrial disorders are rare in the general population, affecting some 2-per-10,000 people (or just 0.2%). So with 4,900 cases filed in Vaccine Court, this case should be the one and only, extremely rare instance of Mt disease in all the autism proceedings.

But it is not.

Mitochondrial disorders are now thought to be the most common disease associated with ASD. Some journal articles and other analyses have estimated that 10% to 20% of all autism cases may involve mitochondrial disorders, which would make them one thousand times more common among people with ASD than the general population.

Another article, published in the Journal of Child Neurology and co-authored by Dr. Zimmerman, showed that 38% of Kennedy Krieger Institute autism patients studied had one marker for impaired oxidative phosphorylation, and 47% had a second marker.

The authors — who reported on a case-study of the same autism claim conceded in Vaccine Court — noted that “children who have (mitochondrial-related) dysfunctional cellular energy metabolism might be more prone to undergo autistic regression between 18 and 30 months of age if they also have infections or immunizations at the same time.”

An interesting aspect of Mt disease in autism is that, with ASD, the mitochondrial disease seems to be milder than in “classic” cases of Mt disorder. In fact, classic Mt disease is almost always inherited, either passed down by the mother through mitochondrial DNA, or by both parents through nuclear DNA.

In autism-related Mt disease, however, the disorder is not typically found in other family members, and instead appears to be largely of the sporadic variety, which may now account for 75% of all mitochondrial disorders.

Meanwhile, an informal survey of seven families of children with cases currently pending in Vaccine Court revealed that all seven showed markers for mitochondrial dysfunction, dating back to their earliest medical tests. The facts in all seven claims mirror the case just conceded by the government: Normal development followed by vaccination, immediate illness, and rapid decline culminating in an autism diagnosis.

2) With 4,900 cases pending, and more coming, will the government concede those with underlying Mt disease — and if it not, will the Court award compensation?

The Court will soon begin processing the 4900 cases pending before it. What if 10% to 20% of them can demonstrate the same Mt disease and same set of facts as those in the conceded case? Would the government be obliged to concede 500, or even 1,000 cases? What impact would that have on public opinion? And is there enough money currently in the vaccine injury fund to cover so many settlements?

When asked for a comment last week about the court settlement, a spokesman for HHS furnished the following written statement:

“DVIC has reviewed the scientific information concerning the allegation that vaccines cause autism and has found no credible evidence to support the claim. Accordingly, in every case under the Vaccine Act, DVIC has maintained the position that vaccines do not cause autism, and has never concluded in any case that autism was caused by vaccination.”

3) If the government is claiming that vaccines did not “cause” autism, but instead aggravated a condition to “manifest” as autism, isn’t that a very fine distinction?

For most affected families, such linguistic gymnastics is not so important. And even if a vaccine injury “manifested” as autism in only one case, isn’t that still a significant development worthy of informing the public?

On the other hand, perhaps what the government is claiming is that vaccination resulted in the symptoms of autism, but not in an actual, factually correct diagnosis of autism itself.

4) If the government is claiming that this child does NOT have autism, then how many other children might also have something else that merely “mimics” autism?

Is it possible that 10%-20% of the cases that we now label as “autism,” are not autism at all, but rather some previously undefined “look-alike” syndrome that merely presents as “features” of autism?

This question gets to the heart of what autism actually is. The disorder is defined solely as a collection of features, nothing more. If you have the features (and the diagnosis), you have the disorder. The underlying biology is the great unknown.

But let’s say the government does determine that these kids don’t have actual “autism” (something I speculated on HuffPost a year ago). Then shouldn’t the Feds go back and test all people with ASD for impaired oxidative phosphorylation, perhaps reclassifying many of them?

If so, will we then see “autism” cases drop by tens, if not hundreds of thousands of people? Will there be a corresponding ascension of a newly described disorder, perhaps something like “Vaccine Aggravated Mitochondrial Disease with Features of ASD?”

And if this child was technically “misdiagnosed” with DSM-IV autism by Dr Zimmerman, how does he feel about HHS doctors issuing a second opinion re-diagnosis of his patient, whom they presumably had neither met nor examined? (Zimmerman declined an interview).

And along those lines, aren’t Bush administration officials somewhat wary of making long-distance, retroactive diagnoses from Washington, given that the Terry Schiavo incident has not yet faded from national memory?

5) Was this child’s Mt disease caused by a genetic mutation, as the government implies, and wouldn’t that have manifested as “ASD features” anyway?

In the concession, the government notes that the patient had a “single nucleotide change” in the mitochondrial DNA gene T2387C, implying that this was the underlying cause of her manifested “features” of autism.

While it’s true that some inherited forms of Mt disease can manifest as developmental delays, (and even ASD in the form of Rhett Syndrome) these forms are linked to identified genetic mutations, of which T2387C is not involved. In fact little, if anything, is known about the function of this particular gene.

What’s more, there is no evidence that this girl, prior to vaccination, suffered from any kind of “disorder” at all- genetic, mitochondrial or otherwise. Some forms of Mt disease are so mild that the person is unaware of being affected. This perfectly developing girl may have had Mt disorder at the time of vaccination, but nobody detected, or even suspected it.

And, there is no evidence to suggest that this girl would have regressed into symptoms consistent with a DSM-IV autism diagnosis without her vaccinations. If there was such evidence, then why on earth would these extremely well-funded government attorneys compensate this alleged injury in Vaccine Court? Why wouldn’t they move to dismiss, or at least fight the case at trial?

6) What are the implications for research?

The concession raises at least two critical research questions: What are the causes of Mt dysfunction; and how could vaccines aggravate that dysfunction to the point of “autistic features?”

While some Mt disorders are clearly inherited, the “sporadic” form is thought to account for 75% of all cases, according to the United Mitochondrial Disease Foundation. So what causes sporadic Mt disease? “Medicines or other toxins,” says the Cleveland Clinic, a leading authority on the subject.

Use of the AIDS drug AZT, for example, can cause Mt disorders by deleting large segments of mitochondrial DNA. If that is the case, might other exposures to drugs or toxins (i.e., thimerosal, mercury in fish, air pollution, pesticides, live viruses) also cause sporadic Mt disease in certain subsets of children, through similar genotoxic mechanisms?

Among the prime cellular targets of mercury are mitochondria, and thimerosal-induced cell death has been associated with the depolarization of mitochondrial membrane, according to the International Journal of Molecular Medicine among several others. (Coincidently, the first case of Mt disease was diagnosed in 1959, just 15 years after the first autism case was named, and two decades after thimerosal’s introduction as a vaccine preservative.)

Regardless of its cause, shouldn’t HHS sponsor research into Mt disease and the biological mechanisms by which vaccines could aggravate the disorder? We still do not know what it was, exactly, about this girl’s vaccines that aggravated her condition. Was it the thimerosal? The three live viruses? The two attenuated viruses? Other ingredients like aluminum? A combination of the above?

And of course, if vaccine injuries can aggravate Mt disease to the point of manifesting as autism features, then what other underlying disorders or conditions (genetic, autoimmune, allergic, etc.) might also be aggravated to the same extent?

7) What are the implications for medicine and public health?

Should the government develop and approve new treatments for “aggravated mitochondrial disease with ASD features?” Interestingly, many of the treatments currently deployed in Mt disease (i.e., coenzyme Q10, vitamin B-12, lipoic acid, biotin, dietary changes, etc.) are part of the alternative treatment regimen that many parents use on their children with ASD.

And, if a significant minority of autism cases can be linked to Mt disease and vaccines, shouldn’t these products one day carry an FDA Black Box warning label, and shouldn’t children with Mt disorders be exempt from mandatory immunization?

8 ) What are the implications for the vaccine-autism debate?

It’s too early to tell. But this concession could conceivably make it more difficult for some officials to continue insisting there is “absolutely no link” between vaccines and autism.

It also puts the Federal Government’s Vaccine Court defense strategy somewhat into jeopardy. DOJ lawyers and witnesses have argued that autism is genetic, with no evidence to support an environmental component. And, they insist, it’s simply impossible to construct a chain of events linking immunizations to the disorder.

Government officials may need to rethink their legal strategy, as well as their public relations campaigns, given their own slightly contradictory concession in this case.

9) What is the bottom line here?

The public, (including world leaders) will demand to know what is going on inside the US Federal health establishment. Yes, as of now, n=1, a solitary vaccine-autism concession. But what if n=10% or 20%? Who will pay to clean up that mess?

The significance of this concession will unfortunately be fought over in the usual, vitriolic way — and I fully expect to be slammed for even raising these questions. Despite that, the language of this concession cannot be changed, or swept away.

Its key words are “aggravated” and “manifested.” Without the aggravation of the vaccines, it is uncertain that the manifestation would have occurred at all.

When a kid with peanut allergy eats a peanut and dies, we don’t say “his underlying metabolic condition was significantly aggravated to the extent of manifesting as an anaphylactic shock with features of death.”

No, we say the peanut killed the poor boy. Remove the peanut from the equation, and he would still be with us today.

Many people look forward to hearing more from HHS officials about why they are settling this claim. But whatever their explanation, they cannot change the fundamental facts of this extraordinary case:

The United State government is compensating at least one child for vaccine injuries that resulted in a diagnosis of autism.

And that is big news, no matter how you want to say it.

NOTE: Full text of the government’s statement is posted here http://www.huffingtonpost.com/david-kirby/every-american-should-rea_b_88558.html.

David Kirby is the author of “Evidence of Harm – Mercury in Vaccines and the Autism Epidemic, A Medical Controversy” (St. Martins Press 2005).   

Gluten-free/Casein-free Snack Time Recipes

Snack time can be a great opportunity for sharing with your child in a few moments rest from a busy day.  And, if you share in baking a fun gluten-free/casein-free snack, it can also be a time for promoting communication, building social skills, and working on gross and fine motor skills. 

A couple of our favorite snacks are gluten-free/casein-free biscuits and gluten-free/casein-free blueberry muffins.

GLUTEN-FREE/CASEIN-FREE BISCUITS 

1 1/3 cup brown rice flour

2/3 cup tapioca flour

¼ teaspoon xanthan gum (if you don’t want to use this, then reverse the proportion of brown rice flour to tapioca flour)

1 Tablespoon sugar (I use turbinado sugar)

1 Tablespoon aluminum-free baking powder

1 teaspoon salt

½ cup coconut oil (note – if melted, put in refrigerator or freezer for a few minutes.)

¾ cup rice milk or almond milk

 Mix dry ingredients, then cut in coconut oil using pastry blender or mix on low in mixer until mixture is crumbly.  Slowly stir in rice milk or almond milk until dough leaves sides of bowl.  (Dough will be soft and sticky.)  Lightly knead dough approximately 10 times on floured surface (use mixture of tapioca and rice flour).  Roll or pat dough until approximately ½ – ¾ inch thick.  Cut with floured cookie cutter and place on ungreased cookie sheet.   Bake in 450 degree oven for 10-12 minutes. 

Let your child help you in measuring ingredients.  I let my son stick his fingers in the flour, sugar, and salt.  It’s wonderful tactile stimulation for him.  Let your child use the rolling pin to roll out the dough – it’s a great gross motor exercise.  Let him roll small pieces of the dough into balls between his palms or with his fingers for a fine motor exercise. 

Try using cookie cutters in shapes relating to your child’s interests.  If your child loves outer space, he’ll love star biscuits.  If he’s an animal lover, try finding a dog bone cookie cutter, then use the baked “dog bone” biscuits for a game of pretend. 

GLUTEN-FREE/CASEIN-FREE BLUEBERRY MUFFINS 

¾ cup rice milk or almond milk

¼ cup coconut oil (if melted, place in refrigerator or freezer for a few minutes)
1 egg

1 cup brown rice flour

1 cup tapioca flour

¼ tsp. xanthan gum

¼ – ½ cup sugar or honey (I use only ¼ cup and add extra sweetness with stevia)

Stevia – to desired sweetness (you can actually replace all of the sugar in this recipe with stevia if you like)

2 teaspoons aluminum free baking powder

½ teaspoon salt

1 cup fresh or frozen blueberries

 Beat milk, oil, and egg.  Stir in flour, sugar, stevia, baking powder, and salt and stir only until flour is moistened – batter will be lumpy.  Gently fold in blueberries. Bake 20-25 minutes in 400 degree oven.   

Both of these make great snacks that are easy to carry along when you are out of the house. 

I have great memories of cooking both of these recipes with my son, but especially the biscuits.  I look back now and see how much social progress it has brought him.  And baking together always brings a shared joy, a smile, and a time for relationship building.  We are making so much more than just bread!  Be blessed!

 John 6: 35 “And Jesus said to them, “I am the bread of life; he who comes to Me shall not hunger, and he who believes in Me shall never thirst.”  NASB   

Substitutes for Casein in Gluten-Free/Casein-Free Diet

When eliminating casein from the diet, many parents naturally turn to soy because it has become so popular in mainstream culture – soy milk, soy ice cream, soy cheese, etc.  While I must admit that soy milk and soy ice cream taste really great, unfortunately, soy is not a good substitute for casein in a gluten-free/casein-free diet.  Many doctors and healthcare professionals effectively treating autism encourage soy avoidance.  (See Children with Starving Brains by Jaquelyn McCandless, M.D.)  In many autistic children, the protein in soy causes problems similar to those caused by casein.  Also, food allergies are a common problem with children with autism spectrum disorders, and soy is a very frequent food allergy.  Soy should especially be avoided with boys because soy encourages the production of estrogen. 

Instead of milk or soy milk, try almond milk or rice milk.  Blue diamond brand makes an unsweetened almond milk (original or vanilla), which is great for those trying to keep sugar intake at a minimum.  It can be sweetened with a bit of stevia.  Watch out for hidden gluten in rice milk – one brand does not list any gluten containing ingredients in the ingredients list; however, on the side of the box is a statement that there is some gluten in the product.

I have not found a cheese substitute that is casein-free and tastes good.  (Watch out for casein, caseinate, and also for whey.) 

As far as a substitute for butter in baking – solidified coconut oil works very well.  It will melt when the temperature approaches 80 degrees, so you may have to put it in the refrigerator for a little while before using it to firm it up a bit. 

Experiment with your recipes, and you will find what works best for you.  Remember that the extra effort really is worth it!   

Gluten-free/Casein-free and Specific Carbohydrate Diet Legal Recipes – Breakfast and Dessert

When we first began the Gluten-free/Casein-free (GF/CF) diet and then later the Specific Carbohydrate Diet (SCD), I easily adapted our lunch and dinner menus to comply.  However, I found the two most challenging areas to make GF/CF or SCD legal were breakfast and desserts.

Breakfast

I believe it is important to eat protein in every meal, and for breakfast, I wanted my son to eat some eggs.  Scrabled eggs, gluten-free toast, and fruit seems like a good breakfast to me, but my son gags at even the sight of eggs, so I have to hide them in pancakes.  The only problem is that most pancake recipes are very high in carbohydrates and low in egg and protein content, so I began experimenting and created the following recipe for a high-protein, lower carbohydrate pancake.  When we began the Specific Carbohydrate Diet, I modified the recipe and came up with the Banana Pancakes/Cake recipe and the Zucchini Pancakes/Cake recipe.

HIGH PROTEIN PANCAKES (Gluten-free/Casein-free)

2 eggs

2 Tablespoons buckwheat flour OR tapioca flour and rice flour combination (1/2 of each)

1 Tablespoon melted coconut oil or grapeseed oil (or other mild oil)    

1/8 tsp. baking soda 

Pinch of salt      

Stevia or honey to taste

Beat  eggs, then add remaining ingredients and mix well.   

BANANA PANCAKES/CAKE (Specific Carbohydrate Diet legal and Gluten-free/Casein-free)

I make a large batch and use the batter to make pancakes for that day and then the remaining batter for banana “cake” to have for breakfast for the next day or two.

6-8 ripe bananas     

12-16 Tablespoons almond flour or pecan flour     (note – I use 2 Tablespoons for each banana in the recipe, but experiment with this depending upon the number of eggs you use)   

9-12 eggs (experiment to see how many eggs you can “hide”)

½ tsp. baking soda

1/8 tsp. salt

2 Tablespoons melted coconut oil or grapeseed oil (or other mild oil)

Stevia or honey to taste (I use KAL brand because it has no added fiber or other ingredients.) 

You can make your own almond flour or pecan flour by blending in a food processor for several minutes.  Thoroughly mash bananas.  Beat eggs and add to bananas, then add remaining ingredients and mix well.  Cook enough pancakes for that day, then put remaining batter in greased glass baking dish and bake at 350 degrees for approximately 25-30 minutes for Banana “Cake”.

 

ZUCCHINI PANCAKES/CAKE  (Specific Carbohydrate Diet legal and Gluten-free/Casein-free)

This is a great way to hide both eggs and zucchini.  Vegetables for breakfast – I love it!!!!

4-5 large zucchini (put in food processor until turns into a soft puree’) 

8-10 eggs   

14-20 tablespoons pecan flour (note – almond flour is okay, but does not work as well in this recipe)                         

½ tsp. baking soda      

1/8 tsp. salt   

2 Tablespoons melted coconut oil or grapeseed oil (or other mild oil)  

Stevia or honey to taste

You can make your own almond flour or pecan flour by blending in a food processor for several minutes.  Beat eggs, then add remaining ingredients and mix well. Cook enough pancakes for that day, then put remaining batter in greased glass baking dish and bake at 350 degrees for approximately 25-30 minutes.

Easy Dessert Options

My favorite desserts are easy ones.  I spend lots of time in the kitchen preparing GF/CF or SCD legal meals, so I don’t have much time left for desserts.  But it seems the simpler, the better.  These are some of the best desserts I have ever tasted.

FLOURLESS MACAROONS

4 egg whites    

3 cups Unsweetened coconut   

¾ cup honey    

1 ½ teaspoon pure vanilla extract   

½ teaspoon pure almond extract 

(Note – do not use imitation vanilla or almond extract)Combine all ingredients, drop with tablespoon and bake on cookie sheet lined with parchment paper at 325 degrees for 20-25 minutes.   

NO-BAKE DATE COCONUT ROLLS

2 cups dates 

1/4 – 1/3 cup Unsweetened coconut  (experiment with more or less, depending on the consistency you like)       

1 Tablespoon grapeseed oil

Mix ingredients in food processor for 1-2 minutes, until smooth.  Form into 2-inch rolls and enjoy! 

Have fun experimenting with some of your favorite recipes to make them GF/CF or SCD legal.  Most children love to cook and to experiment with food, so the baking should be as fun as the eating!   

Blessings to you and your family! 

Proverbs 3:13 “How blessed is the man who finds wisdom, and the man who gains understanding.  For its profit is better than the profit of silver, and its gain than fine gold.” NASB 

Omega-3 Fatty Acids – Feeding the Brain

Omega-3 fatty acid supplementation is quite popular in the treatment of autism.  A study performed on the effects of Omega-3 supplementation on autistic behaviors showed improvement in sleep, cognition, overall health, social interaction, and eye contact. 

Three types of Omega-3 fatty acids are a-linolenic acid (ALA), docosahexaenoic acid (DHA) and eicosapentaenoic acid (EPA).  Omega-3 and Omega-6 fatty acids compete with each other and it is important to keep them in the proper ratio: the ideal ratio of Omega-6 to Omega-3 is 1:1.  Primary sources of Omega-3s are fish, flaxseeds, and walnuts, while Omega-6 fatty acids are found in vegetable oils such as corn, sunflower, soy, and safflower and in margarine.  Most Americans consume far too many Omega-6 fatty acids and not enough Omega-3 fatty acids, disrupting the balance of Omega-6 to Omega-3.  Many experts believe that the ratio of Omega-6 to Omega-3 consumed by most Americans is 20:1 and some up to 50:1!  We are in desperate need of Omega-3 supplementation!

Flax seeds, walnuts, and some dark, leafy vegetables contain ALA.  Cold water oily fish such as wild salmon, cod, and sardines are excellent sources of DHA and EPA.  (Note, only wild fish should be consumed – farm raised fish are problematic for many reasons, including their high levels of Omega-6 and lower levels of Omega-3s.)  Cod liver oil and fish oil are very concentrated sources of DHA and EPA.  These oils should be purified to be free from detectable levels of mercury, lead, PCBs and other contaminants.  They should also contain vitamin E to prevent oxidation of the oils.

The list of benefits of Omega-3s is quite extensive.  Particularly relevant to the treatment of autism is the ability of Omega-3s to promote proper cellular function, and specifically the function of brain cells by enhancing brain cell membranes.  Omega-3 fatty acids have also been shown to promote the growth of neurons in the brain and strengthen myelin sheaths, the layer that surrounds parts of neurons in the brain. 

Omega-3s are also beneficial in maintaining energy levels, normalizing blood sugar, assisting concentration and mental clarity, promoting healthy skin (eliminating eczema), and reducing inflamation. Strong evidence shows Omega-3 supplementation helps ease anxiety and depression.  Research also establishes that it is helpful in treating ADD/ADHD and aggression.  Immune function is also benefitted by supplementation with Omega-3 fatty acids. 

The list of benefits goes on and on…..With so many health-promoting factors, certainly Omega-3 supplementation should be a part of a foundational nutritional supplementation program for us all, and particularly in treating autism. 

 

Treating Autism with Nutritional Supplements

Nutritional supplementation can bring dramatic change for many children with Autism Spectrum Disorders (ASD). 

There are several reasons for treating Autism Spectrum Disorders with nutrient supplementation.    Many children with autism are deficient in digestive enzymes, resulting in poor digestion and inadequate absorption of nutrients.  Research published by the Defeat Autism Now! Project (DAN!) on the “Nutritional Status of Autistic Children”, and also by Tim Buie, M.D. of the Harvard Pediatric Gastroenterology Department, and others shows that most autistic children have a number of nutritional deficiencies.  For example, low vitamin B6, zinc, vitamins A and D, folate, vitamin B12, biotin, low B1, B3, and B5 function, low methionine levels, and low levels of essential fatty acids such as EPA (eicosapentaenoic acid, a component of omega-3 fatty acid) and GLA (Gamma Linolenic Acid), abnormal mineral levels, and many others. 

Additionally, exclusionary diets may make nutritional supplementation necessary.  Many autistic children benefit from exclusionary diets such as the Gluten-free/Casein-free diet and the Specific Carbohydrate Diet; however, care should be taken to ensure adequate nutrient intake.  Furthermore, many autistic children are very picky eaters and self-limit the foods they eat, causing nutritional deficiencies and the need for supplementation. 

Nutritional deficiencies can cause neurological and immune system impairment.  Supplementation with vitamins and minerals is an important part of maintaining proper function of these body systems.  Jaquelyn McCandless, M.D., an expert in biomedical intervention for autism and author of “Children with Starving Brains”, reports that the vast majority of ASD children she treats show enormous benefit from vitamin and mineral supplementation – greater speech, more eye contact, and better behavior and sleeping patterns. 

There are a great number nutrients which may need to be supplemented.  By way of example, we’ll discuss a few of them here. 

Supplementation with the B vitamins helps maintain healthy nerve function, skin, and muscle tone.  The combined supplementation of Vitamin B6 (as Pyridoxal 5-Phosphate) and Magnesium has proven to be of significant benefit to autistic children.  B6 is necessary for normal brain function.  There have been numerous studies on B6 use in autism.  A double-blind, placebo controlled study proved supplementation with B6 and Magnesium led to increased eye contact, less self-stimulatory behavior (“stimming”) fewer tantrums, improved speech, a calming effect, and more normal behavior.  Vitamin D, a powerful antioxidant, is needed for proper brain development.  It is also helpful in increasing glutathione levels (which assists in detoxification of the body). 

Additionally, vitamin and mineral supplementation is needed to address the immune system impairment and oxidative stress experienced by many children with autism.  Supplementation with Vitamins A, C, and E promote healthy immune response.  Vitamins C and E are powerful antioxidants which fight free radicals and protect vulnerable brain cells from oxidative stress.  Zinc and Selenium are also essential for peak performance of the immune system. 

Supplementation with essential fatty acids is also beneficial for those with autism or attention deficit problems.  Fish oil and cod liver oil are rich in Omega-3 fatty acids, which are essential for normal brain development.  Omega-3 fatty acids further help behavior and learning by supporting proper levels of neurotransmitters in the brain. 

Most professionals recommend adding one supplement at a time in order to keep track of the child’s progress.  Take detailed notes of dates, dosages, and behavioral changes.  This supplement diary will offer encouragement as the child’s improvement is charted.  A note about nutritional supplements – not all are created equal, so do your homework to make sure you are getting high quality supplements. 

A final reminder – generally, the treatment of autism is a “marathon” and not a “sprint,” so be patient, be consistent, keep going, and look ahead for the brighter tomorrow!

Autism – Keeping Families Together

Added pressures…Families dealing with autism have added pressures that can strain relationships.  Pressures to help your child get better, to navigate through biomedical treatments and therapies…pressures of special diets, anxiety over change or novel situations, pressures of managing tantrums.  Pressures of working through problems with speech, social impairment, sensory integration.   Pressures of judgments and opinions of others – many times of other family members or extended family.  

How do families with an autistic child (or children) cope with these added pressures?  Recent information suggests that the divorce rate in families with an autistic child is about 80 percent!!!  This is much higher than the general divorce rate in the United States (about 1 divorce for every 2 marriages).

How do we reclaim hope for struggling families?  Maybe part of the answer can be found in figuring out how we got off the path in the first place.  Struggles can begin even prior to a child being diagnosed with an autism spectrum disorder.  Conflict and confusion can arise over dealing with the unique health and behavioral challenges of a child with autism.  When behavioral or social issues first become noticeable, parents may have conflicting ideas about the causes and how to handle these issues.  One parent may accuse the other of giving in to difficult behavior or “spoiling” the child, while that other parent might feel their spouse is too harsh or overly-critical.  So, each parent may handle things their own way, and a lack of unity in the family develops.   

There it begins - going down two separate roads.  

But then, more challenges come - dealing with therapies, obtaining services, IEPs, biomedical treatments.  Families can become singular in their focus – to help the child get better.  However, we can get so focused on making sure we have done everything that we can to help our child get better, that we forget one very important thing:  creating a family atmosphere of love, belonging, stability, and peace that acts as a foundation for all the therapies, services, and treatments.  This type of family environment doesn’t just happen as we work our way through life and, in this case, through the challenges of autism.  A strong, stable, loving family comes when family relationships are priority and a focus. 

In our concentrated striving for healing from autism, let’s not forget to focus on building strong families.  I know that autism doesn’t leave much time or energy left for anything else.  And sometimes it seems impossible to even think about anything else.  But even the smallest effort to create unity of purpose can work to bring families back on the same road.    

Increase Non-Therapy Family Time      

When is the last time we did something together as a family that was non-therapy, non-autism-treatment related?  This concept seems so basic, yet, when confronted with the daily challenges, many times I actually forget to make the effort for our family to go to the park, the children’s museum, the playground, a day trip, or a weekend away.  

Laughter – the Greatest Medicine

Have you ever noticed how great you feel around someone who makes you laugh?  When I was a child, my elderly grandmother was in the hospital and was gravely ill.  My brother and I were too young for the hospital’s visitation policies, so my dad snuck us in.  When a nurse caught us, my dad begged the nurse to let us stay.  He said something I will never forget:  “They make her laugh, and laughter really is the best medicine!”

Even though my child with autism has an unusual sense of humor, when I try to share in what makes him laugh, he looks me in the eye – we get a moment of connection!  A unity between us in a shared moment of joy.  I notice a spark in his eye…a glimmer of hope!  Better than any other treatment or medicine!

Family Projects

I think most children, especially young ones, like fun projects.  Putting together a swing, hanging Christmas lights, making a craft project can bring many children out of their shells.  Doing these things as a family also brings a joint sense of purpose and accomplishment when the task is completed.  Family projects also cultivate a sense of ownership and belonging.  Even if the understanding of the project and skill is limited, each family member participating, on his or her own level, allows a feeling of teamwork.

On the road together 

Let’s continue to focus on healing and supporting our children with autism.  But let us also remember to focus on creating strong, united, and loving families where we are walking down the same road – together.    

Colossians 3:12-14:  And so, as those who have been chosen of God, holy and beloved, put on a heart of compassion, kindness, humility, gentleness and patience; bearing with one another, and forgiving each other, whoever has a complaint against anyone; just as the Lord forgave you, so also should you.  And beyond all these things put on love, which is the perfect bond of unity.  (NASB)

Resources:

National Autism Association – Family First www.nationalautismassociation.org/familyfirst2.php

www.nationalautismassociation.org/press061207.php

Enzymes – Helping in Autism

Many children with autism benefit greatly from using digestive enzymes.  Digestive enzymes break down foods so that the nutrients in the foods can be absorbed and utilized by the body.  Studies show that large numbers of autistic children are deficient in one or more necessary enzymes.  This deficiency in digestive enzymes prevents food from being completely broken down, which can irritate the lining of the gut, lead to food allergies and autoimmune responses, cause malabsorption, and manifest in a variety of behavioral difficulties.   

Different types of enzymes work on different foods, so it is important to take the right enzymes for the foods being eaten.  There are many different types of enzymes, but generally, enzymes should contain proteases (to break down protein), peptidases (to break peptides apart), lipase (for fats), amylases (to work on starches and carbohydrates.)  There are also other enzymes (glycoamylase and disaccharidases) which further break down dietary starches on a cellular level – these can be helpful if there is difficulty in digesting carbohydrates.  Also, DPP-IV (a peptidase) has been shown to be helpful in autism. 

I witnessed the benefits of enzymes firsthand with my son – within just a few weeks of starting enzyme supplementation, I noticed (and other people noticed!) my son was not stimming as much, threw fewer tantrums, showed drastic improvements in speech, and showed improvements in bowel function. 

Enzymes should be taken at the beginning of the meal, and the amount of enzymes needed depends upon the amount of food to be eaten.

One note – Some parents note an initial regression (where behavior seems worse), which could be due to the reduction of dysbiotic gut flora.  However, most parents (56%) noticed their children got better within a short time of starting the enzymes.