Autism is a Zero-Sum Game

Today I decided to reactivate my blog not as a research and experiential blog as it was in its first Avatar, but as a place i can vent…ponder…and hopefully celebrate occasionally. I am the mother of 14 year old Sahil, a boy on the spectrum.  Today  is a vent.

I have been reading, living and breathing autism for the last twelve and a half years. We have had highs and lows and many many plateaus. I have learned slowly who my son is…and learned to appreciate his character, intellect and love for me. I have learned to count my blessings. The fact that despite being severely impaired in many aspects of his life his cognition is relatively intact. The fact  that despite the physiological challenges and many invisible medical issues my son grapples with he has a wonderful positivity and even more amazing implicit trust and faith that I will finally make things better for him . The fact that my son has learned to use the written medium to communicate his deepest feelings and thoughts. That from somewhere…I am usually able to dig very deep within myself and find the strength to continue to NOT accept his impairments as carved in stone and look for solutions with the same intensity as I did twelve and a half years ago.

But sometimes this sanctum I and Sahil exist in is violated…. Yesterday we were going on a family visit to the Greater Cleveland Aquarium. He had worn his shoes and jacket and was waiting impatiently for me at the door of our apartment. I was locking up and then remembered that I had forgotten my camera inside. I re entered my apartment to retrieve it and in the meantime Sahil made off to the lift. By the time I  reached the lift lobby he had already gotten into a lift and disappeared. This has happened before, and normally he always comes straight back to the sixth floor where we live. I pressed the lift button waited patiently for a lift door to open on our floor. A lift arrived and the door opened…the lift was empty. I let the door close and pressed the lift button again to call the second lift…convinced he would be in it. The lift door opened and my neighbour emerged. He said “Hi your son is in the lobby and taking down the Christmas tree”

All you need to destroy a balloon is a pinprick…this was my pinprick.

When I reached the Lobby sure enough Sahil had denuded the apartment Christmas tree of all the ribbons decorating it. I grabbed the ribbons mortified and placed them on the table.

I forgot about all the intelligent things he had ever typed, the fact that his school principal thought that one day he might go to college…

All I can think is what a friend of mine had said to me once ….that autism is a zero sum game…you are either functional or you arent. Cognition doesnt make the cut alone…its only a small part of the puzzle…a contributor to functionality…perhaps important but there are so many other important skills that make human beings functional enough to live in a society…social understanding…impulse control..emotional balance..and many many other prerequisites.

And why did he pull the ribbons off the tree instead of coming back to the sixth floor? Perhaps because he is obsessed with stringy objects and because of his irritation at being made to wait, and the fact that he knew he was unsupervised, he succumbed to the urge to get at the ribbons.

I had argued with my friend that in terms of her binary analogy autism was a journey where we moved from the zero to the one.

But finally you have to decide whether you are at zero or at one

2012-12-03 18.35.20

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Cerebral Folate Deficiency Syndrome

                                         

The test for this condition looks at antibody titers in the blood against folate receptor alpha. Those receptors are located on the brain, at the interface between the blood and the cerebrospinal fluid, and ensure the transport of folate from the blood to the CSF. If there are antibodies against those receptors, then the transport of folate from the blood to the brain will be impaired. As a result, you will see low levels of folates in the brain, even with normal levels in the blood. The higher the antibody titers, the lower the brain folate levels.

There are several negative consequences of low folate levels in the brain, because folate in one of the basic bricks to make many things: neurotransmitter, methylation, glutathione, detox, etc… As a result some brain functions and central nervous system functions will be impaired, depending on individuals, additional insults, age of onset, etc… So obviously the relevance to autism is that cerebral folate deficiency causes brain dysfunction, so could be responsible for part of the autistic symptoms. Also, the doctors who’ve been treating hundreds of patients for this condition for over a year now (Rossignol’s practice and Scott Smith’s), say about 75% of children with autism have it, as well as many parents.

The good thing is that this is treatable: by giving high doses of oral folates (typically 100 times the RDA), one can reach a high enough level of folate in the blood (higher than normal) so that enough folates can cross the BBB even with folate receptors blocked by the antibodies. Another key element of the treatment is a dairy-free diet (no milk, yogurt, cheese, whey, colostrum, butter, ghee, etc…), because dairy products from any mammals (humans included) include a folate binding protein that is very close to the folate receptor alpha and thus flares the autoimmune response. So a dairy free diet allows to decrease the titers, and high doses of oral folates allows brain folate levels to be restored.

The main problem is depending on individual weaknesses in metabolism, some have trouble handling all this extra folate circulating through the body.

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The Journey

Source unknown but had to share:

My
name is
Stefani ..
I have Autism. ..
This is my Mummys favourite
poem♥

I am going on a journey,
…Won’ t you come along?
I need someone to help me .
A person big and strong.
I’ m  walking on my journey
But my feet are very small .
Can you stand beside  me,
And catch me if I fall ?
At times when I can ‘t keep up With life
and all its fears ,
Can you put me on your shoulders
And wipe away the  tears ?
When the steps I take are not big enough
And it ‘s hard for me  to grow
I know I can depend on you
To let me take it slow.
I’ m going on a journey,
Please, won’ t you walk with me ?
I need someone who  understands
The place where I should be.
I promise when the road is tough
And you want to turn back home .
I will hold your hand real tight,
So you won’ t feel so alone.
I’ m going on a journey I don’t
know where it ends ,
But if we walk together,
We can always be best friends .
And when the journey’s over
And we find where we should be.
I know that you will be so glad,
You took this path with me.
I’ m  going on a journey,
Please, won’ t you come along?
I need someone to guide
me  A parent —big & strong. ♥
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Gluten Free Vs Gliadin Free Diets

Corn contains proteins called Corn gluten(which is extracted as a processing
byproduct and used as a weedkiller)

Celiac and autism forums
generally allow corn in GF diets – why?

Well turns out that the protein
that the immune system predominantly reacts to
generally in gluten is called
“gliadin” and is present in the wheat, barley and
rye glutens but not in
corn/maize etc

http://www.medterms.com/script/main/art.asp?articlekey=11381
http://en.wikipedia.org/wiki/Anti-gliadin_antibodies
http://en.wikipedia.org/wiki/Gluten
http://foodintoleranceinfo.com/gluten/hidden-gluten-in-your-food

However
some people do react to corn also.

Posted in Diets-GFCF | Tagged , , | 1 Comment

The Surge of the Super Special Entrepreneurs

A new trend is emerging in the “Special” family community. I feel privileged and happy to see this happen. Parents now want to “Be the change” they wish to see for their children…

It started many years back when my friend and special parent “C” started an ABA based therapy centre in Delhi. Though she let go of the reins because of personal commitments the centre is thriving, has helped many children and parents from all over Delhi and has spawned many branches in the national capital.

Another friend “G” unhappy with the jingoistic and exclusive attitude of many “inclusive” schools, and the lack of adequate resources/ performance standards  in less expensive schools, opened a school for children on the spectrum, providing inputs from the best specialists in the city, and the best resourcing, at a fraction of the cost that the most exclusive schools were charging.

Yet another daughty parent “S” brought NACD to India from Utah making it one of the very few international chapters in the world, to do this she tirelessly worked to arrange to get the founder of NACD Bob Doman to come to New Delhi to meet with parents,educators and doctors , hold seminars.

Another parent “M” decided to start a sunday leisure group for children with autism and special needs to play football, do aerobics and other fun activities

Over and above this I have been delighted to see  two new schools sprout up, in the last 6 months, sponsored by parents who wanted to provide world class facilities to special children…Another parent is talking about setting up a daycare type program with a slant at socialisation. These parents may not have the expertise in themselves but they know what they want for our children and are willing to invest in it.

We also have parents pioneering therapies like “Yoga for Special Needs”

Photo - Mimi

The best part about this is that unlike institutions sponsored by the government, adherance to performance norms is going to be a guiding criteria for these startups to be self sustaining. The other thing we are going to see is that unlike clinics set up by treatment providers, where the high charges for services are based on including a profit…it is unlikely that parent sponsored initiatives will have profitability as a guiding criteria…if it were to be so then by that very basis they would be unlikely to obtain the very essence  which would lead to their success i.e. the involvement/synergy and support of other parents…

Parents nowadays are willing to dream of a structure for their children and then they get their bricks and shovels…

Posted in Parent Support/Advocacy | Tagged , , , , , , | 5 Comments

Vitamin B12 forms, Folate and Autism

This is an interesting/informative post on B12 vitamins from Metagenics/Dr Mercola’s :

In a broad sense B-12 still refers to a group of cobalt-containing vitamer compounds known as cobalamins:

these include

1)cyanocobalamin (an artifact formed as a result of the use of cyanide in the purification procedures),

2)hydroxocobalamin (natural precurser form),

and finally, the two naturally occurring cofactor forms of B-12:

3) 5-deoxyadenosylcoba lamin (adenosylcobalaminâ”AdoB-12), the cofactor of Methylmalonyl Coenzyme A mutase (MUT),

4)Methylcobalamin (MeB-12), the cofactor of 5-methyltetrahydrof olate-homocysteine methyltransferase (MTR).

Methylcobalamin supporters state its superiority as it is the primary circulatory form and acts as a methyl donor. Adenosylcobalamin, however, accounts for 70% of cobalamin stored in the livert the major storage site for B12, while methylcobalamin accounts for only 1% to 3%. It is also argued that cyanocobalamin is poorly converted into its active forms and releases cyanide into circulation-neither of these statements is supported by research.
Since the cyanocobalamin form of B-12 is deeply red colored, easy to crystallize, and is not sensitive to air-oxidation, it is typically used as a form of B-12 for food additives and in many common multivitamins.  Research findings have demonstrated that oral cyanocobalamin is safe and easily and rapidly converted to both methylcobalamin and adenosylcobalamin during absorption and at the target cell, and does reverse B12 deficiency signs and symptoms.

Oral cyanocobalamin has a long history of use worldwide. In Sweden, oral high-dose cyanocobalamin is the major treatment form for B12 deficiency and maintenance and has gained widespread popularity since its introduction in 1964. More than one million patients and years of data in Sweden support the use of oral cyanocobalamin to correct and prevent B12 deficiency signs and symptoms and it is considered a standard of care for most patients.  In virtually every aspect of B12 activity oral cyanocobalamin has demonstrated benefits, including psychological, neurological, and hematological.
A key function of B12 is its participation in methylation reactions. Foremost of these processes is the reduction homhomocysteine.

While methylcobalamin does participate in homocysteine reduction, it is secondary in significance to folic acid. Methylcobalamin receives its methyl group from folic acid (methyltetrahydrofo late). The body ârecyclesâ methyl groups and cobalamin. In the homocysteine cycle, as an example, cobalamin donates its methyl group and is then converted back to methylcobalamin, receiving a methyl group from 5-methyl-tetrahydro folate. The primary methyl donor is folic acid along with other methyl donors, whereas cyanocobalamin provides the vitamin B12 component for the cycle. Â In patients with end stage renal disease, a condition associated with hyperhomocysteinemia cyanocobalamin was demonstrated to be equipotent in reducing plasma homocysteine levels in a comparison to hydroxycobalamin.

In a 2001 study  printed in JAMA, Tice et al. reported oral cyanocobalamin to be a cost-effective method of reducing plasma homocysteine levels in multiple population groups.  Â  B12 deficiency has been associated with alterations in cognition in the elderly. There is a known connection between elevations in homocysteine and age-related cognitive decline. The relationship must certainly include deficiencies of both folic acid and B12.

Oral cyanocobalamin is capable of reducing serum methylmalonic acid concentrations, an indication of B12 repletion. Therefore, increasing the intake of B12 as cyanocobalamin may provide protection against cognitive decline in older populations.

No toxic effects of oral B12 consumption have ever been reported at any level of intake. In a 1991 JAMA report, Hatchcock and Troendle reported no concerns with the oral use of B12. Cyanide release from oral B12 was said to be toxicologically insignificant. The lack of reported B12 toxicity is a testament to the effective and safe use of this oral compound.
http://en.wikipedia .org/wiki/ Vitamin_B12

In humans, only two corresponding coenzyme B-12-dependent enzymes are known:

-Methylmalonyl Coenzyme A mutase (MUT) which uses the AdoB-12 form and reaction type 1 to catalyze a carbon skeleton rearrangement (the X group is -COSCoA). MUT’s reaction converts MMl-CoA to Su-CoA, an important step in the extraction of energy from proteins and fats. This functionality is lost in vitamin B-12 deficiency, and can be measured clinically as an increased methylmalonic acid (MMA) level. Unfortunately, an elevated MMA, though sensitive to B-12 deficiency, is probably overly sensitive, and not all who have it actually have B-12 deficiency. For example, MMA is elevated in 90-98% of patients with B-12 deficiency; however 25-20% of patients over the age of 70 have elevated levels of MMA, yet 25-33% of them do not have B-12 deficiency. For this reason, MMA is not routinely recommended in the elderly.[11] The “gold standard” test for B-12 deficiency continues to be low blood levels of the vitamin. The MUT function cannot be affected by folate supplementation, and which is necessary for myelin synthesis (see mechanism below) and certain other functions of the central nervous system.

Other functions of B-12 related to DNA synthesis related to MTR dysfunction (see below) can often be corrected with supplementation with the vitamin folic acid, but not the elevated levels of homocysteine, which is normally converted to methionine by MTR.
5-methyltetrahydrofolate-homocystei ne methyltransferase (MTR), also known as methionine synthase. This is a methyl transfer enzyme, which uses the MeB-12 and reaction type 2 to catalyze the conversion of the amino acid Hcy back into Met.[12] This functionality is lost in vitamin B-12 deficiency, and can be measured clinically as an increased homocysteine level in vitro. Increased homocysteine can also be caused by a folic acid deficiency, since B-12 helps to regenerate the tetrahydrofolate (THF) active form of folic acid. Without B-12, folate is trapped as 5-methyl-folate, from which THF cannot be recovered unless a MTR process reacts the 5-methyl-folate with homocysteine to produce methionine and THF, thus decreasing the need for fresh sources of THF from the diet. THF may be produced in the conversion of homocysteine to methionine, or may be obtained in the diet.

It is converted by a non-B-12-dependent process to 5,10-methylene- THF, which is involved  in the synthesis of thymine. Reduced availability of 5,10-methylene- THF results in problems with DNA synthesis, and ultimately in ineffective production cells with rapid turnover, in particular blood cells, and also intestinal wall cells which are responsible for absorption. The failure of blood cell production results in the once-dreaded and fatal disease, pernicious anemia. All of the DNA synthetic effects, including the megaloblastic anemia of pernicious anemia, resolve if sufficient folate is present (since levels of 5,10-methylene- THF still remain adequate with enough dietary folate). Thus the best known function of B-12 (that which is indirectly involved with DNA synthesis and restoration of cell-division and anemia) is actually a facultative function which is mediated by B-12 conservation of active folate which can be used for DNA production.

Posted in Biomedical | Tagged , , , | 1 Comment

Post 5 days of Camel Milk; Degeneration…Quest and…Discovery…

Degeneration…

My supply of 2 litres of imported Dubai camel milk  finished in 6 days. Some of the effects of camel milk appear to be unfortunately immediate and impermanent. We were on vacation in Goa while the camel milk trial was on. The day after his last dose of camel milk my son got severely sick, he had been suffering from a mild cold however this intensified and he felt warm to touch, he vomited a bit and was listless. I was not worried because I had many healthful things to give him which his body responds well to. He was given a half liter of ganoderma tincture(a potent anti inflammatory, antiviral medicinal mushroom extract) and about 400 ml of coconut kefir.

What actually worried me was the return of the soft tissue injury on his foot…the swelling was back, along with such a bad limp that he could not walk at all. All this had been absent while on camel milk.With the bumper doses of Ganoderma and kefir he started doing a little better and was atleast able to start walking a little bit, and eat some food. Unfortunately his toiletting regression also returned. I realised that we needed to get him back on camel milk as soon as possible and this seemed like an impossible task, since it was only available at Bikaner and Jaisalmer, both destinations atleast more than 10 hours drive from Gurgaon where I lived.

Quest…

When I researched the internet, I discovered to my dismay that pasteurised camel milk had been supplied to Delhi upto about 14 months back. It was discontinued in the absence of demand. When I called up the centre in Bikaner they told me that this had been handled by a dairy which had since discontinued the distribution of camel milk. It was no longer sent to Delhi, Jaipur or anywhere. The person from the centre further clarified their role to be research and not distribution. I enquired  the point of researching its health benefits if it was not being made available to the general public and he depressed my spirits further. He added that they were trying to encourage herders to extract camel milk as this was being done very seldom and camel milk was generally fed to the target God had probably intended i.e. baby camels.

Discovery…

When we got back to Gurgaon I immediately started my quest for local sources of camel milk. I had seen a small camel grazing in the rural hilly villages at the outer edge of Gurgaon, when I had been for a trail run in the Aravalli hills. I drove down the hilly road and was finally able to locate the owner of the camel. Disappointment awaited…the owner of the camel said that their camel was just a baby and no where near producing milk. Not one to give up, I asked if there were any other camels kept in the neighbouring areas. We were directed to another village a little further away. Travelling down the broken roads I didnt have much hope of finding lactating camels and when we finally found the herder…I was amazed when I saw the group of camels…about 20 of them and about 10 baby camels. The elder was sitting on a charpoy  and smoking a hookah. Heart in my mouth I enquired of him whether they could provide me camel  milk and was astounded when he smiled and answered that I could get as much as  I wanted. They had two milking times 8 in the morning and 6.30 pm.

Camels at feeding time

I started bringing Sahil for a glass of fresh and raw camel milk at 6.30. The balance was frozen and put out to thaw about an hour or so before he  consumed it. Since research had confirmed that boiling camel milk destroys the protein based immunoglobulins and hence the immune modulating properties of camel milk, we had it raw for 4 days. I would give him one glass immediately, and then the balance would be frozen and then either thawed before use or made into smoothies. Sahil was having about 3 glasses or 750 ml per day.

Visible Benefits…

  • The first visible effects were ofcourse related to his foot injury…the inflammation again started to vanish and the limp completely disappeared.
  • The other thing I noticed was an immediate reduction in stimming after drinking the milk and general quietening down. However this would last for about 2 hours only.
  • His toiletting again improved dramatically.
  •  His play with the ipad improved he started exploring new applications on his own rather than perserverating on his few favourites.
  • Finally  we saw improved self awareness and/or executive function in terms   of responding to environmental cues like Sahil going and changing his pants himself without prompting when he observed that they were dirty, or when he went to wear his sandals when I mentioned to someone that it was time for me to go.

Raw…

I was very happy with the progress but the nagging doubts about the risks of persisting with raw unpasteurised camel milk of untested rural camels hovered over me. I consulted the experts on camel milk on the online camel milk for healing group which I had joined. What appeared critical when having raw milk from any animal source were the following factors:

1. Health of the camels to be ascertained through regular testing by a veterinarian

2. Testing of the milk for pathogens

3. Hygiene of the process of milking i.e. washing/sanitising of the udders, hands and vessels involved in the milking

4.Time period elapsed between the milking and the consumption not to be more than half an hour

I was pretty unconvinced about whether any of the top 3 points being adhered to and was only ensuring the one in my control i.e. giving fresh milk immediately and then freezing the balance

Someone had likened having raw milk in such conditions to playing Russian roulette with my son’s health. Pasteurised unboiled milk was largely said to possess almost the same level of healing because the delicate proteins were relatively undamaged as compared to when boiled. Pasteurisation involved heating the milk to 72deg C for 15-16 seconds and then cooling it down fast so that the heat killed all major pathogens without cooking its componants.

Home Pasteurisation

I  received some specific advice for pasteurisation from an expert on camel milk as follows “Dear Harshita, pasteurising milk at home is not difficult and doesn’t need a machine. Take a pot with water and insert a smaller pot with the camel milk. Heat the water. This will heat the milk. Take a lab thermometer which goes up to 100 degree Celsius. Stir slowly the milk and measure its temperature. Once 72 degree Celsius milk temperature are reached take both pots from the heater, cover the milk pot with a lid and let it cool down. Best regards”

And another expert added ” If you go as high as 72°C, you don’t want to let the milk cool slowly on its own, as it will remain hot for a long time and cook too much. Either stop at 65°C and leave it to cool, or heat until 72°C and put it in ice water after one minute. Quite enough. Don’t worry about the hot pan, if it is in a pan of water as (first expert) suggests it will not damage the milk.”

So this is what I am following… I have two pans…the outer pan contains water and the inner one camel milk, I heat them both while stirring continuously monitoring the temperature through a laboratory thermometer. As soon as the temperature reaches 72 deg I remove the pans from the heat cover for a minute and then cool them down in cold water. After the temperature comes down a bit the camel milk is put in the freezer to freeze.

Am also planning to get both the fresh and the home pasteurised milk tested for pathogens from a laboratory. However this will take a few days as I need to find a laboratory willing to conduct such a test.

These are minor issues and it is still difficult for me to fathom that I have succesfully found a closeby source of this milk, so scarce in its availability, and which seems to be something my son reacts so positively to. AND I have been able to make this milk relatively safe for consumption without drastically reducing its therapeutic benefits.

The best thing yet…the other day I reached when the camels were returning from their feed. What do they feed on? the healing herbs, shrubs and leaves from a nearby forest…untouched by man…  There is joy when the road opens out and the barriers start to fall…

Posted in Biomedical, Camel milk | Tagged , | 25 Comments

5 Days of Camel milk

Camel Milk sounded like another unlikely therapy that a “somewhat less sane” “obsessive-compulsive” or just simply “nuts”parent like myself would get embroiled in. Or so my husband thought when I requested him to carry back 2 litres of Camel Milk from a business trip in Dubai
However after doing a 5 day trial I felt it was definitely worth writing an update on the results I am seeing and the research available on the subject.
There is quite a bit of peer reviewed research of the properties of this substance as well as some reputable Governmental organisations doing work in this area. (1)
Why does it work? I give below an extract from Prof R Yagil’s paper covering its many unique characteristic properties that cause the “healing”

“Research on milk of the one-humped camel has been done in greater detail than thatof the two-humped camel (Yagil & van Creveld, 2000).Dromedary milk is pure white as the fats are finely homogenized throughout the milk; the milk is low fat -2% (Yagil, 1985) and the fats consist mainly of PUFAs – longchained poly unsaturated fatty acids (Abu-Lehiya, 1987); it has a relatively low pH(Yagil et al, 1984) probably caused by the high concentrations of ascorbic acid -vitamin C (Yagil, 1985; Farah, 1996); proteins are present at 3.2% but lack theALLERGENIC !beta lactoglobulin and have a different, “new” beta casein (Beg etal, 1986); there are bacteriostatic and viricide activities of the milk (Barbour et al,1984; El-Agamy et al, 1993); lactose appears in similar percentages to cow milk but lactose intolerant people do not exhibit the typical signs after drinking camel milk(Jack Hanna’s Animal Adventures).
Camel milk has high concentrations of calcium and iron so the low pH of the milk(from the ascorbic acid – vitamin C) allows enhanced absorption from the duodenum.
INSULIN IN MILK:
(a) Camel milk contains large concentrations of insulin – 150 U/ml (Zagorski et al,
1998);
(b) Fasted and dehydrated rats and rabbits had a decline in blood sugar after receiving camel milk. As fasting nullifies insulin secretion, the drop in blood sugarindicates insulin activity.It must be noted that fasted rabbits used to be the bioassay for insulin – the
concentration of insulin given as rabbit units.
(c) Streptozotocin induced diabetes in rats was controlled and cured with camel milk.
(d) Although human, cow and goat milk contain insulin, it is degraded in the acidenvironment of the stomach. This does not occur with camel milk which does notreact to acid (Abu-Lehiya, 1989) and no coagulum is formed. Personal observation in a calf which died 2 hours after suckling: no coagulum was present in stomach although it was filled with milk.
PROTECTIVE PROTEINS:
Camel milk contains various protective proteins, mainly enzymes which exert antibacterial and immunological properties (Kappeler, 1998).
The presence of these proteins help explain some of the NATURAL HEALING properties of the milk. The known protective proteins, and their immunological action, in camel milk are:
Lysozymes
• participates in primary immune system, which is based on targeting ofstructures common to invading pathogens.
Immunoglobulins
• These give the immune protection to the body against infections.
Lactoferrin
• iron-saturated lactoferrin (from second week lactation) prevents microbial growth in gut.
• participates in primary immune system, which is based on targeting of structures common to invading pathogens.
• Camelid milk apparently contains much more lactoferrin than in ruminant (cow, sheep and goat) milk (Morin et al, 1995).
Lactoperoxidase
• lactoperoxidase is found in milk, tears and saliva. It contributes to the nonimmune host defense system.
• exerting bactericidal activity, mainly on gram-negative bacteria.
• has growth promotion activity.
• has anti-tumor activity (Ueda et al, 1997).
• has a close relation (71%) to human thyroid peroxidase, which is involved in iodination and coupling in the formation of the thyroid hormones.
Peptidoglycan recognition protein (PGRP)
• the highest concentrations of this enzyme is in camel milk.
• was first discovered in camel milk
• has apparent effect on breast cancer (Kiselev et al, 1998) by controlling metastasis (Kustikova et al, 1996).
• stimulates the host’s immune response
• broad antimicrobial activity.
N-acetyl-§-glucosaminidase (NAGase): The milk enzyme NAGase is an accepted test for mastitis in cows. When it was first documented that camel milk was rich in NAGase it was assumed that those camels suffered from subclinical mastitis
(Abdurahman, 1995). However after checking milk of hundreds of camels (Chaffer et al, in Press) and llamas (Morin et al, 1995) all with high NAGase levels another conclusion was reached. It was concluded that NAGase has an antibacterial activity and so strengthens the antibacterial-antiviral activity of the milk. It is noteworthy that the NAGase activity is similar to that in women’s milk, confirming the nutritional advantages of camel milk over cow milk.
In Israel (RY) a number of diseases have reacted positively to drinking camel milk:
CLINICAL OBSERVATION DATA BASE:
Insulin Dependent Diabetes Mellitus (IDDM):
In India a comparison between conventionally treated juvenile diabetes with those also drinking camel milk showed that the group drinking the milk had significantly reduced blood sugar and reduced HbA1C levels (Agrawal et al, 2002). The amounts of injected insulin were also significantly reduced.
In Israel diabetics drinking camel milk showed similar results as in the clinical trials. A case in particular was a young girl who started drinking camel milk within 2 weeks of the diagnosis of IDDM. After 8 weeks she was getting minimal dose of insulin while blood sugar declined to 80mg% and HbA1C to 7.
IT IS NOTEWORTHY THAT HYPOGLYCEMIA IS A COMMON FINDING WITH THE MILK, PROBABLY DUE TO THE REDUCED FEEDBACK OF GLYCOGEN.
Milk allergies:
The fact that camel milk lacks lack β−lactoglobulin and a “new” β−-casein (Beg et al, 1986), two powerful allergens in cow milk, makes the milk attractive for children suffering from milk allergies (Makinen-Kijunen & Palosvo, 1992). Phylogenetic differences could be responsible for the failed recognition of camels’ proteins by circulating IgEs and monoclonal antibodies (Restani et al, 1999). Children with severe food allergies improved rapidly with camel milk.
Crohn’s Disease: Crohn’s disease is becoming an epidemic in many countries. Lately increasing evidence points to a primary bacterial infection by Mycobacterium avium – subspecies: paratuberculosis (MAP). This mycobacterium could spread via cow milk as it is unaffected by pasteurization.
IT IS POSIBLE TO GET MORE INFORMATION FROM THE INTERNET BY SEARCHING “PARATUBERCULOSIS”.
Apparently MAP enters the mucosa as saprophytes and only become active when the person is in severe stress, leading to a secondary autoimmune response. As the bacteria belongs to the family of tuberculosis and as camel milk has been used to treat tuberculosis (Urazakov & Bainazarov, 1974,) it becomes apparent that the powerful bactericide properties of camel milk combined with PGRP havea quick and positive effect on the healing process. In addition, immunoglobulins attack the anti-DNA and restore the immune system.
Autism: As a malfunction of the immune system causes an alimentary enzyme inhibition, causing the breakdown of casein, not to aminoacids, but to casomorphine. The casomorphine is a powerful opioid, much more potent than morphine itself. Autistic children drinking camel milk have had amazingimprovements in their behavior and diets.
CONCLUSION:
Camels’ immune system is stronger than that of humans’ and the small immunoglobulins pass from the camel milk into the human blood. As immunoglobulins are found in camel milk throughout lactation, drinking milk willprovide a ‘tool’ for combatting autoimmune diseases by rehabilitating the immune system rather than is depression.”

Quick summary of all that i have observed in the last 5 days since beginning Camel Milk
1. Healing of a soft tissue foot injury in the first two days including the mysterious overnight disappearance of swelling which had been prevalent for the last 20 days healing at the “hindu rate of growth”(read real slow)
2. Amazing bowel movements
3. COMPLETE Reversion of a toileting regression that had been ongoing for a few months (origin unknown)
4. Improvement in play
5. Reduction in impulsive behaviour
6. Improvement in compliance
7. Improvement in speech(Yes… but not yet in quality or clarity but more in terms of quantity)

He has been given about 300 ml of Camel Milk per day for the last 5 days in 3 divided doses. The brand I used came from a Dubai Supermarket called Camelait. It came pasteurised, but I have not heated it and it has been stored in the refrigerator.
The beneficial effects of Camel Milk are pretty rapidly observable…and so have put them down in this note…however it will be interesting to see whether they persist even when I run out of Camel Milk which is going to be the day after tomorrow!!!!
I give below a variety of links to studies and blogs on the subject for those who wish to find out more.

For local Indian sources of camel milk…get in touch with me!!!!!

http://carinsmit.co.za/blog/autism/benefits-of-camel%E2%80%99s-milk-for-children-with-autism-and-neuro-integrational-immunological-challenges/

http://www.camelmilkforhealth.com/admin/uploads/pubs/Camel-milk-autoimmunity.pdf

http://www.camelmilkforhealth.com/admin/uploads/pubs/ar05dec-12.pdf

http://webcache.googleusercontent.com/search?q=cache%3AEVbEExqkXM4J%3Awww.nrccamel.com%2Fintro.php+NATIONAL+RESEARCH+CENTR+FOR+CAMELS&cd=2&hl=en&ct=clnk&gl=in&source=www.google.co.in

http://lppsindia.blogspot.com/

http://en.wikipedia.org/wiki/Camel_milk

https://www.facebook.com/TreatAutismNow#!/groups/225663314116369?ap=1
(1)National Research Centre for Camel, Bikaner

Posted in Biomedical, Camel milk, Diets-GFCF | Tagged , | 14 Comments

Minocycline Experiences

Minocycline is a promising treatment for autism because of many reasons. It has already got positive results in fragile x cases and is being tested in autism because of its neuroprotective qualities as well as it strong anti inflammatory action on the brain, and elsewhere.

It is a weak broad spectrum antibiotic which is used generally in the treatment of acne and is supposed to have a positive effect in mild RA.

“As an anti-inflammatory, minocycline inhibits apoptosis (cell death) via attenuation of TNF-alpha, downregulating pro-inflammatory cytokine output. This effect is mediated by a direct action of minocycline on the activated T cells and on microglia, which results in the decreased ability of T cells to contact microglia which impairs cytokine production in T cell-microglia signal transduction .[24] Minocycline also inhibits microglial activation, through blockade of NF-kappa B nuclear translocation.”(wiki)

Here are a couple of important recent articles/studies on minocycline:

1.Minocycline attenuates T cell and microglia activity to impair cytokine

production in T cell-microglia interaction

2. John Hopkins Study

Our trial with minocycline continues since we have not seen any adverse effects beyond impaired balance of intestinal pathogens. Many families have had to abandon use of this medicine because of skin and teeth discoloration etc.

This medicine is inhibited by iron,zinc and calcium supplementation and should not be taken within two hours of these nutrients.

We started seeing beneficial effects after about 6 weeks of being on the drug which included increase speech usage and reduction in hyperactivity.

Impairment in gut environment also happened within a couple of weeks, specifically clostridia type overgrowth; which resolves only with heavy daily probiotic supplementation i.e. we are ok on the days that we drink atleast 300-500 ml of coconut kefir. The good part about this was that the behaviors normally associated with these infections(aggression, screaming, destructiveness, impulsivity) did not manifest themselves - leading one to hypothesize that perhaps reduced inflammation in the gut was leading less leakage of toxins through the intestinal walls.

However the improvements due to minocycline appear to have tapered off and since we are now using classical homeopathy, minocycline is on our list of supplements to wean. Planning to do this after having a sleep EEG done, in consultation with both our DAN and homeopath

Posted in Autism Intervention Therapy, Autism research | Tagged , , , | 2 Comments

Sahil and the Monster Machine

MRI

MRI machine

Someone from the National Brain Research Institute got in touch with me a while back asking if I could enroll Sahil in an MRI/fMRI  study on the processing of music vs speech in persons with autism. I was pretty interested as I read a lot on the brain and have always been curious about Sahil’s brain and how it is so different from mine. Not worse, infact definitely more efficient in some areas of functioning.

They would also share all test results- a structural MRI, f MRIs and latest psychological testing results. Now, I do know that these things cost an arm and a leg if i try to get them done myself, and if i could even get a single piece of information on how to access seemingly inaccessible parts of his brain it could be a potential dealbreaker in our current equilibrium. The icing on the cake…they would do it without sedating him so a) he would learn how to have a VERY difficult test done b) we would be able to see his brain response to anxiety(definitely not visible when doped to sleep) c) his brain response to speech / music (the actual objective of the study)

So I readily agreed.

Our first visit Sahil took an instant dislike to the MRI scanner.  Two hours were spent in trying to make him lie down in place. He just knew that this thing was evil…but he did lie down for all of 30 secs at the end of 2 hours because he loves me(actually irrelevant) and he knows I never give in (more to the point) and there were GFCF cookies waiting if he did it (even more germane).

Ok so now i knew it wasnt going to be easy (I still lived in a world where wishing it were so made things happen effortlessly) Thinking cap on I figured that he needed to realise that an MRI machine was nothing too great, a piece of furniture albeit hi tech… just a nice cosy bed…

So I told Megha who was coordinating the effort to send me videos of kids going into the machine, each aspect of the procedure. We set up an appointment a week later and voila the watching of the video worked. Sahil lay down in the machine wore the headphones and the rest of the paraphernalia and allowed the monster to whizz him inside and…. then came the noises.

The noises were like a cross between loud jarring banishee and someone banging cast iron pots and pans in your ear. They made the claustrobhobic ride even less bearable. These noises were not something I or Sahil had been prewarned about or bargained for. We were not able to go through with the full fledged five MRI sessions. We did however by the end get a 5 minute structural MRI done albeit slightly blurred because he moved a little at the closing stages.

Third day Sahil was amazing and brave and ofcourse greedy. He knew that if he got it right even a bit, he got chips and cookies and juice. With a display of an amazing amount of self control we got 4 more MRIs done. In each case there was a slight movement after a few minutes of the MRI. Megha checked them out and a few days later told me that two would have to be repeated. Since we wanted absolutely accurate scans I took Sahil a couple of days later and he repeated the two scans, he even did the structural MRI which had been a bit blurred on day 1 and we finally did an extra MRI which would give information on connectivity of the various parts of the brain. And yes, again we saw the victory of greed over anxiety!!!

Still waiting for the results to come in. Megha will help me interpret them and then am planning to also show them to a neurologist. Hoping that this will be a pivotal piece in the puzzle we are trying to put together.

The learnings from this for all you guys:

Be prepared in all aspects- flying by the seat of your pants does not help either the parent or the child with autism, in a difficult situation.

Prepare your child using the best materials  possible (Photographs, videos, drawings, stories)

Have your reinforcers ready (This has to be stuff he would willingly die for)

Be patient (I didnt use this- but if this was an ideal world…)

Be positive and reinforcing for the slightest movement in the right direction.

Do not, repeat not use force(even if I had wanted to…Sahil is 5’7″ at 13 and I am 5’2.5″ at 43). He is only going to get bigger and me.. I’m only going to get smaller.

Posted in Autism research | Tagged , , , , | 4 Comments