Discussing Autism

When we went to visit our Pediatrician last week because AJ has bronchitis I asked her about the new Autism Screening and what she thought about it. Her response was that they had been doing it for years…so why come up with a new plan? (more…)

The Gluten and Casein free diet has been getting a lot of press from Jenny McCarthy. The diet has never been proven but thousands of parents know that it works, including us.

Allen Lewis M.D. wrote in the Autism Society of America publication, Advocate, “Controlled studies of the GFCF diet and the ketogenic diet have indicated improvement. A dietary trial is safe and the best way to determine if dietary restrictions are of benefit.”
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The National Autism Association (NAA) announced November 1 that they are supporting and encouraging a nationwide initiative to encourage schools to implement the “Greening the School” program run by the Environmental Center for Pediatric Oncology.
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My son LOVES to eat Hamburgers and French Fries. In fact, he LOVES McDonalds but is it safe for him to eat on a GFCF diet?
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The past few weeks have been difficult around here. On a personal note, we have been dealing with our second adoption and the issues with Guatemala. We have decided to cut ties with Guatemala and head down the domestic path and we have turned in everything to our local home study agency and are well on our way. It is difficult though, to imagine having an infant in our home now instead of a toddler.
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At first the idea of “drugging” my child really scared me especially when cases like the one Dateline covered Monday Night.

Clonidine is a drug typically used to treat hypertension in adults but it has been found to effectively treat ADHD, tourettes, and even sleep disorders in children. Children with Fragile X Syndrome have been successfully treated with Clonidine and with Clonidine and CNS stimulants like Methylphenidate, or Ritalin. Because medication can be important in the treatment of behavior disorders we made the best decision we could…but it was hard.

When I realized that we had no other choice because of the amount of sleep he was getting and his severe aggression I was conflicted. Should I give my son a medication that will help him and that he needs or should I keep him drug free?

We chose to use Clonidine to help Little Pickel sleep. The first night he used it was the first night in over a year that we and more importantly, HE, had a full night’s sleep.

But why would we even consider medication in the first place? Since adopting AJ he had not gotten a full nights sleep…and it had been almost 1 and a half years. It took him almost 3 hours to fall asleep and then he would have horrific night terrors that sometimes lasted up to an hour. Of course, he was not awake, but it meant that he was not passing over in to deep sleep properly, thus not getting good REM sleep. Then, after his night terrors, he would wake 10-12 times a night sometimes for only a second to roll over, sometimes because of a wet diaper, and sometimes for hours.

We tried Benedryl on really tough nights and he would sleep for almost exactly 4 hours. We also used Melatonin but that effect had started to wear off and we could not increase the dosage because he would get insomnia at 2 in the morning. The next day he would then nap in the afternoon for two to three hours and I would as well…getting much needed sleep.

When we talked to his new pediatrician about his sleep issues and she noticed his aggression (due to both sleep deprivation and copper toxicity) she instantly thought of Clonidine. However, she did not want to prescribe it until he adjusted to his new school and home. When we saw her 2 months later and we were still in the same boat…she prescribed it.

Clonidine is in a group of medicines called alpha-agonists. By regulating brain activity, it has a calming effect in children with attention deficit and hyperactivity disorder (ADHD). It can also be used for other conditions, such as tics, aggression, or sleep problems.

I will cover more tomorrow on the dangers of over-medication of children.

Can Shamans and Horses unlock the mysteries of autism?

Read this fantastic article by Tim Rayment from the Sunday Times.

Word Press, Technorati, autism, shamans, horses, love, Tags

My very first post here at Discussing Autism was that Autism can not be cured.

I came across this documentary, Finding the Words, about children recovering from Autism.

In FINDING THE WORDS, we watch parents of children once considered hopeless describe the amazing journeys they’ve taken to bring their sons and daughters back - fighting the prevailing view of autism as a disorder that is “incurable and untreatable”; battling the effects of what they describe as a “complex, multifactorial illness”.

The film also covers the scientist and doctors searching for answers.

View the trailer here
and read the press release here.

Should I bite my tongue?

Word Press, Technorati, finding the words, autism, recovery, cure, Tags

Originally posted on My Two Boys
I received an email today from a FRUA friend dealing with food issues in her daughter. With all of our food issues with Little Pickel and all of our recent experience I told her that I would respond here instead of by email so that all of my readers could benefit.

We first knew something was wrong with Little Pickel’s digestive system when he had horrible gas problems, diarrhea mixed with constipation, unexplainable rages, and parasites and stomach bacteria. The orphanage initially told us that he was allergic to milk when he was a baby but that he had grown out of it. We took precautions and decided to use soy formula as a supplement instead of milk formula (as per our international physician). It was a great idea because we soon found out that ANY amount of casein/lactose gave him problems.
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I wrote yesterday about how I believe that Little Pickel’s chelation treatment has done wonders for him. But, how can I tell if it really has worked?

The DAN (Defeat Autism Now) Autism Research Institute has an Autism Treatment Evaluation Checklist (ATEC) that they recommend completing each month for several months after treatment.

Little Pickel is still struggling with some of the issues on the checklist but has improved in the areas of temper tantrums, sensitivity to other’s feelings (actually gave an unsolicited “I’m so sorry” yesterday!), less violence and repetitive speech, much more physically able to eat a variety of foods, more affectionate and responsive (unsolicited “I love you’s”!).

Find out if your current treatment is working!

Word Press, Technorati, Defeat Autism Now, DAN, Autism Research Institute, Evaluation Checklist, Tags

The start of this summer, as many of you remember, was very difficult for us, as we were beginning our chelation with Pfeiffer Treatment Clinic. Little Pickel had an extremely difficult time with his initial toxin die-off and then again when we introduced the Nystatin, a yeast treatment it got even worse. We had days of constant, literally constant screaming.

However, his improvement this summer, has been dramatic. In fact, we are so enthusiastic about his progress that we are going to keep him on the chelation protocol for several more months because it is a vitamin and amino acid therapy and can do no harm to his system…only good. We realize that this can be costly to us but we see such a different kid and we love it.

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Sometimes teachers don’t take into account special diets when it comes to classroom supplies. As a parent I am not complaining because I am also a teacher and know that I was not cognizant of those things.

Sure, I looked at all of the medical forms but then I filed them away and never looked at them again.

However, some of them can be very important.

What if your Gluten Free/Casein Free student eats Play Doh or finger paints and then licks their fingers? Yes…it does happen.

Here is a handy list to get you started.

From TACA Now

* Paints — six colors (Crayola, Palmer, or Lakeshore brand)
* Crayola
Washable Markers (large and small sizes)
* Crayola First Crayons or regular crayons (two pkg.)
* Crayola Model Magic in several colors (Do not use Playdough or Crayola Dough or any substitutes unless sent from home! Model Magic dries out after several uses–include baggies)
* Crayola brand chalk in white and colors
* Elmer’s or Ross Brand Liquid Glue (old fashioned paste contains wheat)
* Elmer’s or Ross Brand Glue Sticks (2)
* Scotch brand clear tape, 1 roll
* Craft supplies (small baggies filled these items):
Corn elbows, corn rotelli, rice, black-eyed peas, lentils, rice spaghetti, colored rice or lentil noodles–remember, your child cannot use regular pasta for crafts or in a sensory bin

From the GFCF Website:

* Palmer Paint Products, Inc. (Can be found in Walmart, Michaels, also S&S World Wide Arts catalogue)

Prism Brand Acrylic Glow in the Dark
Prism Regular Acrylics
Prism Model Paints
Prism Pearls
Palmer Nature’ Hues
Palmer Liquid Tempera (contains corn starch)
Palmer Washable Liquid Tempura
Palmer Face Paint
Palmer Glitter Paint

* Crayola
(Binney & Smith, Inc.) 1-800-272-9653 www.crayola.com/index.cfm

Palmer Dry Tempura (contains corn starch)
Washable Markers
Model Magic
Markers
Chalk
Silly Putty FREE Silly Putty with purchase of $15 worth of Total Tools products! Use promo code TOOLS07 at checkout.

Jumping Colors
Mess free Color Wonder
3 D Markers
Oil Pastels
Powder Paint
Water Soluble Oil Pastels
Note: NO Crayola dough it contains Gluten!

Elmer’s Washable Glue is also GFCF www.elmers.com 1-888-435-6377
School Supplies/Glue - Conros Corporation, Canada 1-800-387-5275 www.conros.com/RossAdhes-KangGlu.html
Ross White Glue
Ross Glue Sticks
Ross School Glue

Also, make sure to include your child’s favorite treats; Dum Dums, Tropical Source Lollipops, Farley’s Jelly Bird Eggs, Peeps, etc.

I also make sure I send products like these listed below;

* Unpowdered plastic gloves or Liquid Glove (if needed for other activities–soap play, cooking, etc.)
* Colored page reinforcers or pony beads (there are no GFCF Cheerios, so for crafts/activities that involve gluing cheerios, use colored page reinforcers, Gorilla Munch cereal, or plastic pony beads)
* Baggies of Gorilla Munch (Kix-like GFCF corn cereal)
* Colgate Shaving Cream (for OT activities); do not use Nickelodeon Floam, Goop, etc.
* Silly Putty
by Crayola is GFCF (for OT activities)
* Palmer face paints or Hello Kitty products can be used for makeup for dress-up activities/plays
* Ivory soap, Johnson and Johnson Baby Soap, shampoo, and lotion are GFCF; avoid other lotions used in physical therapy unless you know they are GFCF
* Toothettes and lemon-flavored cottonball sticks used by speech therapists are GFCF

If you need to provide medications for allergic reactions make sure those are gluten free/casein free as well. Here is the most recent list but always make sure to verify.

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A few days ago Kerry Ng at The Autism Blog wrote an article on how vitamin D deficiency is related to autism. The Telegraph was the first to report this article Telegraph in England where they have had the worst midsummer weather on record. But why does that matter?

Because sunlight gives us Vitamin D. Without Vitamin D our bodies can suffer from rickets, multiple sclerosis, diabetes, and possibly, autism.

Children from orphanages like Little Pickel are at a great risk for a vitamin D deficiency due to lack of sunlight as well as proper nutrients. Additionally, according to the Telegraph they are at a greater risk for Type 1 diabetes and MS.

However, the risk of MS, diabetes, and possibly autism, can be decreased by having birth mothers take vitamin D during pregnancy and by giving infants vitamin drops that contain vitamin D.

The Vitamin D Council tends to agree with the UK theory.

The theory that vitamin D deficiency, during pregnancy or childhood, causes autism is just a theory. However, the theory has a plausible mechanism of action, explains all the unexplained facts about autism, subsumes several other theories, implies simple prevention, and is easily disprovable—all components of a useful theory. A genetic lesion (abnormality) in some component of the vitamin D system—a lesion vitamin D’s unique pharmacology could overcome—would explain why monozygotic (identical) twins are highly affected while fraternal twins are not. Varying brain levels of activated vitamin D during later life would explain why some identical twins get severe disease while others are barely affected. Falling vitamin D levels over the last 20 years due to sun‑avoidance explain autism’s rapid increase in incidence during that same time. The very different effects estrogen and testosterone have on vitamin D metabolism may explain why boys are much more likely to get it than girls are. Lower vitamin D levels in blacks may explain their higher rates of autism. The vitamin D theory has tenable explanations for all the epidemiological features of autism.

What is interesting is that when the American Medical Association Council on Scientific Affairs told the American public to start avoiding the sun (specifically pregnant women and young children) they also did not warn us of the potential vitamin D deficiencies that would cause.
Currently, they still recommend the same daily units of vitamin intake. Dietary Reference Intakes: For Calcium, Phosphorus, Magnesium, Vitamin D, and Fluoride (Dietary Reference Series)

Why is vitamin D so important?
According to the Vitamin D Council it aids in normal brain development, stimulates brain cell growth, and maintain normal blood levels of calcium and phosphorus. It also helps to maintain strong bones, thus the connection to rickets.

Major Food Sources
Cod Liver Oil
Salmon, Mackerel, Tuna (although children are not advised to eat fish, especially salt water)
Fortified Milk
Margarine
Pudding prepared with fortified Milk
Ready to eat cereals fortified with 10% of the daily allowance
Eggs (vitamin D is in the egg yolk)
Liver
Swiss Cheese

When does a Deficiency Occur?
The Office of Dietary Supplements states that a deficiency can occur for 1 of four reasons.
# when usual intake is below recommended levels (Milk allergy, lactose intolerance, vegetarianism, and strict breast feeding without supplementation)
# when there is limited exposure to sunlight
# when the kidney cannot convert vitamin D to its active hormone form
# when someone cannot adequately absorb vitamin D from the digestive tract

In this case, my son had 3 strikes against him when we adopted him; he was not given the proper nutrition and had a lactose intolerance and no vitamins, he had limited sun exposure, and he had a stomach bacteria called H Pylori which damaged his intestinal lining and caused a “leaky gut”. When we brought him home from Russia at the age of 26 months he had a mild case of rickets (seen only in his protruding forehead), and was also very anemic.

Do children with rickets show signs of autism?
Personally, YES. Little Pickel, my son had mild rickets and he showed many signs of autism, albeit Institutional Autism, but only upon getting adequate nutrition. Before that he was quite calm and sedated. Once he started eating he was able to “come out of his shell”.

This is Mangan’s answer from Vitamin D Council:

If vitamin D deficiency caused autism, then children with vitamin D deficient rickets would be at greater risk for the disease. To the best of my knowledge, no studies have looked at the psychiatric profiles of children with vitamin D deficient rickets to look for evidence of autism. However, children with rickets are more likely to be hypotonic (flabby muscle tone), display decreased activity, and have developmental motor delays. Hypotonia is common in children with autism, as is decreased activity, and developmental motor delays are the rule

All that said, does Vitamin D link to Autism or is this just the new fad in theories?

Word Press, Technorati, Vitamin D, deficiency, autism, institutional autism, rickets, developmental delays, Vitamin D Council, sunlight, H Pylori, Multiple Sclerosis, diabetes, orphanages, Vitamin council, pregnancy, children, blood cells, brain development, Tags

What Causes Autism? (from http://www.springboard4health.com/notebook/health_autism2.html)

A great deal has been learned about the etiology of autism in recent years. The physiological abnormalities that occur in autism appear in most cases to be due to a combination of genetic propensity and environmental insult.

The theory that best accounts for most of the abnormalities in autism is that of methylation dysfunction, however many other biochemical abnormalities have been found in increased frequency in autistic individuals, and a number of these will be discussed in this chapter.

The Genetic Propensity
What Is Methylation Dysfunction?

1. Methylation dysfunction: In February 2000 William Walsh, Ph.D. of the Pfeiffer Treatment Center discovered that “most autistic patients exhibit evidence of diminished metallothionein (MT) activity and (that)…many of the classic features of autism can be explained by a compromised metallothionein system.”

The metallothionein family of proteins is found throughout the body. They are short, linear, S-shaped chains of amino acids and are rich in cysteine, a toxic-metal-binding amino acid. Each metallothionein can bind up to 7 zinc ions and 13 copper ions.
They function to:

1. Regulate zinc and copper levels in blood.
2. Detoxify Mercury and other harmful metals.
3. Regulate the development and function of the Immune System.
4. Regulate the development and pruning of brain neurons.
5. Prevent yeast overgrowth in the GI tract.
6. Produce enzymes that break down casein and gluten (DPP IV).
7. Respond appropriately to intestinal inflammation.
8. Produce stomach acid.
9. Regulate taste and texture discrimination on the tongue
10. Normalize hippocampal function and behavior control
11. Normalize the development of emotional memory and socialization.
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What exactly is the Pfeiffer Treatment Center that we went to? Our pediatrician thinks its a quack center wanting to get our money.

Ped: Never listen to anyone telling you about chelation. All they want is your money. There is no reason to chelate unless they come into your house and find toxic levels of lead or arsenic. Then you obviously need to do IV chelation. Anyone else is just a quack.

Me: (dumbfounded, as I thought she was somewhat on board) Well, we are doing this naturally through vitamin chelation…Vitamin C, selenium,

Ped: (she cuts me off) You can get those things naturally through fruits and vegetables.

Me: (okay, conversation useless) Yes, but there are so many foods that he can not tolerate.

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