Tuesday, June 28, 2011

Lemons into Lemonaid

I've been faced with the dilemma of how to go back to work while keeping Charlie's diet and supplement and therapy schedule going. Here is a solution. Instead of feeling like I'm disadvantaged, unable to return to my former career. I've decided to turn Charlie's disability into a career change.

I've created a Food Coaching business. I will help other parents make the dietary changes required to follow biomedical treatment of autism, ADHD, asthma and allergies. I made a website, business cards are due to arrive as soon as the mail strike is over. I signed up to attend the practitioner seminars at the Las Vegas ARI conference in October. This will provide me with the tools to become a DAN nutritionist. I'm registering at the Canadian College of Natural Nutrition to become a Holistic Nutritionist.

Here is my website:

http://JanineMosley.yolasite.com/

Here is the conference information:

http://www.ariconference.com/

Here is the holistic nutrition school:

http://www.csnn.ca/

Today is going well. The first juice had:

1/8 ASD multi
1/8 GABA
1/8 taurine
1/2 probiotic

The babysitter noticed an improvement in attention during stories and patience.

His second juice was as above but without taurine and with P5P.

He had a fruit and veggie tray and chicken broth for lunch.

The third juice had:

1/8 asd multi
1/8 taurine
1/8 GABA
1 probiotic

He just kicked his sister and he's complaining of a headache. Tomorrow I won't add the third dose of multivitamins.

The morning was good. Tomorrow I see Dr. Clack. I need to get his test results from Great Plains Labs.

Monday, June 27, 2011

Breakthrough

This afternoon has been amazing. No stimming, no aggression. He wanted to help me garden and cook. Dr. Sears is a miracle worker.

I just made a diluted calcium and vit d oj with

1/8 ASD multi
1/8 GABA
1/8 taurine
1 cap 50mg P5P
1 cap HMF forte probiotic

No complaints of dizziness or headache or stomachache.

We played a sustained game of eye spy in the park. I suggested a bath and he eagerly came home and jumped in.

Now I have daydreams of going to Europe next year.
I need to figure out what is causing his vestibular 'attacks'. This morning it was bad. He complains of a headache, feels cold then gets dizzy and spaced out. Now he is fine? I'm wondering if it is diet?
Last night we gave him an mB12 shot and fish oil while sleeping.

This morning he had:
Coco rice cereal
Almond milk
Banana

Oj with
1/4 ASD multi
1/4 GABA
NOW probiotic

He was hyper and crashing all morning

Then apple juice with
1/8 ASD multi
1/8 GABA
1/8 taurine
1/2 now probiotic

He's calm now and watching YouTube.

For lunch he's having hamburger, sausage, sweet potato fries and a banana

I've given him a third juice with:
1/8 asd multi
1/8 GABA
1/8 taurine
1/2 Genestra probiotic

I think this will be the standard dose for now, I don't think he can handle any more of that multi vitamin without crashing and getting hyper.

Can't wait for the Kirkman multi to arrive along with the digestive enzymes.

Sunday, June 26, 2011

New books, new supplements, new naturopath

I'm making an appointment with a new naturopath.  His name is Dr. Clack and his practice is in the Touchstone Naturopathic Centre. The clinic supplied a big information packet.  I like information.  I recieved a list of reccomended reading.  I picked up two books on Thursday, and I just ordered two more today. 

On Thursday I picked up at Indigo:

Healing Our Autistic Children by Dr. Julie Buckley
Healing the New Childhood Epidemics by Dr. Kenneth Bock

I've pretty much blown through them this weekend.

I've also ordered from Amazon.ca

Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder
Jaquelyn McCandless, et al

 Changing the Course of Autism: A Scientific Approach to Treating Your Autistic Child
Bryan Jepson, Jane Johnson

I read today that Carnosine could cause hyperactivity.  Its suggested for seizure patients, its also the second last supplement on Dr. Bock's list. I'm going to cut it out.  Both of the new books contain supplement schedules and dosing.  Here is Dr. Bocks suggestions:

Tier 1
Vit C
Vit E
Zinc
Cal/Mag
Vit A
EFA
Probiotics
Tier 2
digestive enzymes
b-6
taurine
melatonin
Mb-12
folinic acid
n-acetyl-cysteine
leucine, isoleucine, valine
TMG or DMG
vit D
Q-10
transfer factor
selenium
iron
chromium
multi

Dr. Sears suggests:
1-digestive enzymes, esp DPP-4
2-taurine
3-fish oil
4-multivitamin(A,C,D,E,B1,B2,B3,B6,B7,M12,Cal,iodine,Mag,Zinc,Selenium,Manganese,Chromium,Molybdenum,folinic acid,choline, inositol,glycine, DMAE, n-acetyl-cysteine,taurine)
5-probiotics

I picked up some more supplements at QI:
Genestra HMF Forte probiotic
Natren Healthy Starter Kit probiotic
NOW Taurine powder
stevia

I've put together a new plan for next week. The goal is to reduce sugar intake, hyperactivity, and agression. 

Here is the supplement plan:

First Juice (diluted with stevia)
1/4 asd multi
1/4 GABA
1/8ts taurine

Second juice
1/8 asd multi
1/4 GABA
probiotics (genestra)

Night Time
d drops
1ts pro EFA fish oil
3mg melatonin
1/4ts GABA
mB12 shots every third night

From the new naturopaths website I learned about an online store for supplements called:

http://www.spectrumsupplements.com/content.asp?node=384

From them I was able to order Kirkman SuperNuThera plus P5P and a Kirkman Digestive Enzyme.

These past few days have been especially difficult. Both kids picked up a bug.  They had GI and Respiratory symptoms.  Interestingly, Clara was hit first and suffered longer.  This to me is a sign that Charlie's immunity is strengthening, it could also be a sign that Clara's immunity is weakening and she is heading down the same road.  We had a huge GI set back with Charlie as the bug just wiped him out, after 3-4 days of normal poop.

I have to focus on the positive, and remember that he had 3-4 DAYS of normal bowel movements.  That is the FIRST time in his life. 


I'm not happy that the order of supplements has been disjointed because they are based on what I've been able to get my hands on, instead of the recommended proper order.  However, again, focus on the positive.  We have started the process.  Dr. Clack suggests that the process should take 2 years.  On the 2 year anniversary of starting the biomedical protocol, Feb 14, 2013, I hope to look back on these posts and congratulate myself on a job well done.  My hope is that he'll be in French Immersion with his neurotypical peers, and his diagnosis will be removed.

Wednesday, June 22, 2011

Improved GI, social, language but vestibular and proprioception suffering

We've had a few days of stability. I haven't adjusted any dosing. He complains of a headache, feeling cold and he starts crying when it's time for the next supplement. He needs more b12. he seems to only last 2.5 days and then it runs out and the screaming starts again.

I can't wait to see the naturopath again.

His OT noticed that his vestibular issues are worse now, he got really dizzy. He also crashed into Clara. It's the first time she saw him crash. She recommended the 'how does your engine run' program for self regulation.

Even with the bowling marble incentive he is not able to control himself. He crashed and tackled kids at the Storefront today.

The school board is trying to find a placement for him. They want to know if I want a small class with partial integration. I don't know what to ask for. There isn't expertise surrounding Aspergers in kindergarten. I just want him to enjoy school and I want the other kids to be protected from him.

Saturday, June 18, 2011

GAPS diet

Some of the moms on ASD and SPD newsgroups have moved from GF/CF to the GAPS diet.  I just checked it out, and it made sense to me.  GAPS stands for Gut and Psychology Syndrome. 

http://www.gaps.me/preview/?lang=en

This is a diet that aims to heal the gut in people afflicted by the following:

Did your child have normal development in the first year of life, and then in the second year became autistic, hyperactive, defiant, oppositional, aggressive, obsessive, compulsive or developed other abnormal behaviours?

Did your baby suffer from colic, loose stools, constipation, eczema, asthma, ear infections or chest infections treated with antibiotics?

Did you or your child have digestive problems and allergies, was a fussy eater, then in late teens become anorexic or bulimic?

Did you or your child suffer from tummy aches, dyslexia, dyspraxia, was anaemic or vegetarian, and then developed psychotic episodes and was diagnosed with schizophrenia?

Did you or your child have urinary infections or acne, treated with numerous courses of antibiotics, and then developed bloating, abdominal pain and was diagnosed with IBS (Irritable Bowel Syndrome)?

Has your baby been diagnosed with Failure To Thrive?

Were you not breast fed as a baby and were prone to colds and infections, and then developed an OCD (Obsessive-Compulsive Disorder)?

Did you have food allergies / intolerances, painful or irregular menstruations accompanied by migraines, and then developed depression?

Do you suffer from chronic cystitis, mood swings, anxiety, poor memory, difficulties to concentrate, are underweight and just cannot put any weight on?

Do you suffer from Crohn’s disease, ulcerative colitis or any other digestive disorder?

The diet is really extreme.  However, I think I am already partially there, especially after making two pots of stock this week.  The diet emphasizes homemade organic stocks, soups and stews (we're already there).  Homemade fermented unpasteurized dairy (yikes, we'd have to move to a farm and buy a cow or source some raw milk from that guy who sells from his truck at the GO Train station). Fresh pressed juices (crap, we sold the juicer!). Meals consisting of meats, fish, eggs, veggies and snacks can be baked foods made from dried fruit and nut flours or fresh organic fruits.

Makes total sense, except for the raw milk issue (big contentious one in Canada).....if I cook full time, I can probably pull it off, especially if it means I no longer have to change my 3.5 yr olds frequent messy diapers, care for an autistic child and worry about my daughter developing autism, allergies etc.

The catch is, that I need to start working more.  I need to figure out a way to continue to treat and heal Charlie while working too.  Yikes.  Especially when you factor in a possible cause of his autism was the fact that I was working full time in the food industry while pregnant.  The diet, environment and exposure to chemicals and pesticides was not so great.  It could also be the rennovation we did while I was pregnant.  Or the medicated hospital birth.  Or that I couldn't stomach the prenatal vitamins.  Or hyperthyroidism. Or gestational diabetes. Or the kidney infection that I medicated with antibiotics. Or living near diesel trains. Or wearing new pyjammas with brominated flame retardants.

Or, simply genetics. 

An article that is circulating the media that blames a lack of prenatal vitamins on autism is really bothering me.  It doesn't seem much better than the trend 50 years ago to blame 'cold mothers' on autism.  How convenient and helpful to the makers of Materna for autism to be blamed on the mother because she didn't take a vitamin supplement.  Why do our foods NEED to be fortified in the first place.  Why don't they contain the nutrition we need as a species after 200,000 years of evolution.  What has changed in the past 50 years to explain the recent explosion of diet related disorders and illnesses.  Of course, you can't address these issues in 100 words or less.  The take home message for mothers will be, buy more Materna and your child might not become autistic.

There are many probable hypotheses to the cause of autism, but no definitive cause has been identified.  It's the canary in the coal mine.  Once the cause is discovered, it will be a major blow to modern western society.  Especially if the causes include; impact of industrialized agriculture (pesticides, grains, sugars, dairy, unhealthy animals, imported foods), food processing (food packaging, processed meats, combining grains and dairy with sugars, colours, flavours, and additives and preservatives that are attractive to children yet impact gut flora and brain function) pharmaceutical industries (antibiotics, vaccines), oil and gas and the massive chemical industry (paints, flame retardants, etc).  Quite frankly it is making my head spin when I add up all the things I might have done wrong.  I can beat myself up for not changing factors that had the potential to harm him, or I can just try my best to help him heal and move forward.

Missed an mB12 shot

After the last posting, he regressed into autism.  He spent the afternoon screaming, hurting his sister, watching repetitive clips on Youtube, ignoring us, not communicating and refusing to go to the park.

My mom was over and witnessed the whole thing.  I realized I'd forgotten to give him a mB12 shot the night before, because I fell asleep before he did.

While he was watching the computer, I grabbed him and gave him an injection.  He didn't cry, he just said "I don't like that".

Within 20min, he began to socialize.  He began to make eye contact, comment on the Youtube clip, and displayed a shared interest in the narrative.

We asked him if he wanted to go to the park again.  He looked at our eyes, and pleasantly agreed.  We walked to the park, he was walking ahead of us, and turned around to make eye contact and smile.

At the park, he climbed the slide, got to the top of the slide, and turned to make eye contact with me and said 'I love you'. 

I can't think of a more compelling or convincing scenario which shows the need for universal nB12 injections in all kids with ASD. 

Thursday, June 16, 2011

Routine

I worked yesterday , so can't comment on the details. He was not aggressive in the park. He earned his bowling marble, so Dan took him to Kipling Bowlerama and then to a park. He scored a strike in 10 pin. He was thrilled.

Both kids stayed up way too late, despite his 4mg of melatonin. I blame the lunar eclipse.

This morning he had a 'normal' routine. No screaming or asking for special interests. He went 1&2 in the toilet! Brushed his teeth and got dressed. He still demands to be fed. He had rice cereal with almond milk.

No meltdown when the babysitter came to pick him up, he was reluctant, but eventually went and had a good time.

The first juice had:
1 capsule carnosine
1/4 multi
1/4 GABA

I made organic veg soup with:

Roasted chicken stock
Parsnips
Carrots
Celery
Fennel
Cabbage
Zucchini
Parsley
Basil
Thyme
Navy beans
Basmati rice

I had 3 bowls and the kids each had one.

His second juice had

1/4 asd multi
1/8 GABA
1 capsule probiotic

He is watching YouTube clips that he was obsessed with a year ago and screaming a lot this afternoon. I thInk he's tired, I'm certainy exhausted.

My mom is coming to look after him. He screamed for 2 hours on Sunday when she was here.

I'm tempted to sneak in his methylb12 shot in this afternoon, so that his behavior improves. He'd probably be traumatized by the needle. I don't want him to see it until he is mature enough to tolerate me administering it. That may never happen...needle phobia certainly runs in his family.




He had organic veg soup for lunch with:

Tuesday, June 14, 2011

GABA For social anxiety

I reduced the total GABA today to 1/8 in the morning and 1/8 after lunch. Not enough, he was very socially anxious at the park today. Crashing, wrecking kids sand castles if they wouldn't be friendly with him.

He needs maybe 1/8 in the morning and 1/4 after lunch.

I also increase the probiotics to 1.5 capsules, I'll go back down to 1 a day, split up.

Imagination, Social communication, Story telling, Shared attention, Theory of mind

He had a small tantrum this morning before going out with the babysitter. This was separation anxiety. He said he wanted to stay home with me and Clara. The significance is that he is prefering the closeness of his family, he didn't initially ask for computer.

He came home in a good mood. Told me he was gentle with the other kids in the park.

He had apple juice with:
1/4 ts ASD multi
1/8 ts GABA
1 capsule carnosine

He had soup made of:
Organic veg broth
Rice pasta shells
Stahlbush org mixed veg
Org chicken

And a cucumber

I just gave him another juice with 1/2 capsule probiotics.

He said 'when you close your eyes, you see pictures'. I asked him what pictures he sees. He said he sees trains. I asked him if they were the same trains on the tv or that he just saw on the tracks. He said that he sees pretend trains that aren't moving. This is amazing, he has the ability to describe his 'thinking in pictures' as Temple Grandin describes it.

I went to get the laptop for his YouTube reward for being gentle. He was talking about smoke coming out of the computer cables and going into the neighbours house. This is a great first sign of imagination, and eventually he'll have the ability to invent a narrative or tell a story. Dan will be thrilled.

As we watch tv and YouTube this afternoon, it's easy for him to respond to my communication. I asked him if he wanted more soup. Before treatment, he would ignore such a request, I would have to try different ways to get his attention and help focus on my language. After asking him once he made eye contact and said 'I don't know'.

He is constantly shifting his gaze from the computer to my eyes, asking me if I like the clip, commenting on it and just now, he encouraged me to get myself some apple juice. This us shared attention and theory of mind! He is interested in how I am experiencing the video AND he cares that I might be thirsty.

Or maybe apple juice is the new code word for 'treatment for anti-social behavior and anxiety management'. In which case, there are a lot of people in this city who could benefit from some of his 'apple juice'.

Monday, June 13, 2011

The worst is over

Last night he ate a lot of roast chicken.

In his last juice I put:
3mg melatonin
1/8mg GABA
Probiotics, I think?

He drifted off late, but without tantrums.

This mornings first juice had:

1/4 ts multivitamin
1/4 ts GABA
1/2 capsule probiotics
1 cap carnosine

He was calm, wanted a lot of YouTube. I noticed that O'Doughs bread has soy. He's been eating it for 2 days. That could explain some of the stimming and agression.

I made a pot of organic veg broth and a pot of organic chicken stock.

Veg broth

Onion
Celery
Parsley
Leeks
Potato
Carrot
Kale
Pepper

Chicken stock
Roasted chicken carcass
Onion
Leeks
Celery
Carrots
Pepper

He had veg broth with carrots and rice pasta. For a treat he had Annie's gummi bunnies, he ate the red ones, I ate the orange ones.

His second juice had the same supplements as the morning. He was pretty good in the park. No pushing, kicking. lots of social communication. When I wasn't looking, he tried to wrestle with a kid. I 'll tell that's not allowed, he always takes it too far.

This morning he told me he's going to be a gentle boy today. I sighed a big sigh of relief after 2 years of anxiety over his aggression towards his peers.

He used the potty for 1&2 again today. MORE PROGRESS!

He's drinking the vegetable broth. He had a snack of organic rice bread with almond butter and blueberry jam, org tomatoes, org blackberries, org cucumber and org carrots.

That b12 shot is the easiest, simplest autism treatment. I want to become a methylb12 fairy, visiting all autistics every 3 nights to inject it into their bum!

Sunday, June 12, 2011

Do Toxins Cause Autism?

I'm watching the webcasts from the 2010 ARI conference and here are some referenced articles.

From the NY Times, a great piece on the link between environmental toxins and autism

http://www.nytimes.com/2010/02/25/opinion/25kristof.html

'autism and other ailments are, in part, the result of the impact of environmental chemicals on the brain as it is being formed'

Kenneth Bock MD of Reinbeck NY, who cares for 2000 kids on the spectrum supports the hypothesis that

1. The primary genetic vulnerability appears to be, in many children, an impaired ability to detoxify
2. Environmental insults include toxins, such as  heavy metals, pesticides and other chemicals, aswell as food sensitivities or allergies and infections.
Turning a corner.

This morning he woke up cold, and wanted us to lie down with him and warm him up.  This is a great sign, It means he prefers human comfort and is becoming more sensitive to temperatures. His old habit was to demand that we accompany him while he engages in a repetitive special interest.  For example 'come downstairs and play trains/dominoes/marble run/bowling'.

He was social all morning.

I gave him diluted apple juice with:

1/8 ts super ASD
1 capsule carnosine
1/4 ts GABA

He drank it no problem. He pushed a kid at each park we visited. But he only had one small tantrum.  His anxiety level is diminished.  GABA is working.  Now we need to work on his impulse control in social situations.  Now that he is gaining the independent and imaginative play skills typical of a child his age, I have decided to use tv and computer, and iPhone time as the reward for good and consequence for less desirable behavior.

I sprinkled the digestive enzyme on our food, it spoiled the taste.  I need to find a digestive enzyme with DPP-IV that has the mildest flavour.

I made a smoothie with:

Banana
Blueberry
Strawberry
Spinach
Almond milk
Probiotics

He didn't drink it.  I did, it's a REALLY strong probiotics. I'm feeling horrible today as every yeast cell and pathogenic bacteria in my body is imploding.

He used the potty and went 1 and 2!!!!

PROGRESS!

He ate a blueberry almond butter sandwich on O'Doughs rice bread.

After lunch I gave him a juice of:

1/8 ts GABA
1/8 ts super ASD multivitamin

I'm going to stop giving flax for now, it's too much fibre. I'm going to start treating for yeast. Start moving towards. An SCD and Candida diet.  Also going to look at grapefruit seed extract.

He asked for books today, told Clara he loved her, asked her to go on the slide with him. He socialized with his peers, even younger boys. He pushed an 18 month old. He set up dominoes by himself.

He had separation anxiety for the first time in his life.  He cried when Dan and I rode off on our bikes for date night, he wanted to join us.  He has NEVER cried when I leave.  This is another Postitive Negative. He cried for 45 min after we left. Passed out from exhaustion. Woke up and cried more. He should have done this when he was 9months old, not 3 years old.

I gave him another diluted apple juice with 1/4 capsule of probiotics.

He pinched his sister a couple of times, so I took away computer. He's at the park now. If he can refrain from aggression at the park today, he'll get to watch Hero of the Rails.

I put an Organic chicken in the oven. Clara is crying lots cause her incisors are coming in.

I'm exhausted, but encouraged.

I'm going to make an appointment with the DAN doctor in Mississauga. Just to get the final CDN DAN! Perspective. Then it's time to turn to US practitioners and watch all the ARI conferences on the web.

The diet was so easy. This is the hardest part. I find it amazing that most of the parents at the Burlington conference thought that a diet change was harder.

Saturday, June 11, 2011

GABA for anxiety and aggression

No problem getting 5ml of fish oil in while he sleeps by syringe. I think I should use the syringe method for more supplements.

I made a smoothie this morning with
Org blurbs
Org Strawbs
Org banana
Org spinach
Almond milk
1/2 scoop super ASD
1 capsule carnisine

He only drank 1/2 the smoothie

I'm torn with whether to reduce his juice consumption to prevent yeast growth, or use juice to hide supplements.

He had org rice and millet cereal with raspberries and almond milk. To it I added its of ground flax.

He did well the whole morning. The first meltdown happened when waiting to go for a kayak ride at Sunnyside for Paddlefest.

He didn't show aggression to the one kid he encountered at the park so we awarded him a bowling marble, took him out for sushi and the boys went out bowling.

Clara and I went shopping and I picked up NOW probiotics and digestive enzymes. I also picked up some GABA which is supposed to help with anxiety and aggression.

I made a smoothie with

Banana
Strawberries
Choc almond milk
Probiotics
Digestive enzymes
1/2 scoop multi vitamin

He didn't drink it, the flavour was not great.

I just read that you shouldn't mix probiotics and digestive enzymes. Also read that multivitamins should not be given at night because of sleeplessness and hyperactivity.

I just gave him 3mg of melatonin and 1/4 ts GABA, and the aggression/hyperactivity has stopped.

Here is my plan tomorrow:

In juice:
1/4 scoop ASD multivitamin
1 capsule carnosine
1/4 ts GABA
1 capsule digestive enzyme

In smoothie:
Probiotics

In breakfast:
2 ts ground flaX

This way I only make 1 smoothie for the whole family, if he doesn't drink it, I will.

At night he can get his melatonin with more GABA if needed

Friday, June 10, 2011

1 week down

I gave him his 3rd shot last night. I put the liquid fish oil in a syringe with a feeding tube and while he was sleeping, injected it into his cheek.

His first words when he woke up were 'I love you Dandy'. No tantrums this morning. I made him a smoothie with:

Organic blueberries
Organic strawberries
Banana
Almond breeze
Organic spinach
1 capsule carnosine
1/2 scoop of Asd multi vitamin

I made him scrambled organic eggs with organic ketchup and organic grape tomatoes.

He behaved well through the morning while at the waterfront with friends.

His first meltdown happened when we decided to stop on the waterfront path for a picnic. He has trouble with eating with people. It's too social for him. He had repetitive vocalizations 'I want to go home' and I was starting to pack up and throw in the towel, when a GO train passed by and saved the day. For the rest of the afternoon the sight of GO trains calmed him and seemed to re-set his composure. He showed some agression, pushing/tackling/kicking/spitting. When I tried to remove him to protect the other kids he did something he's NEVER done before. He turned the aggression to me and started hitting me in the face.

His eye contact has improved, he had sustained conversations with his friend. He initiated appropriate social contact with other kids and actually outlasted a 5.5 yr old in conversation, the kid turned to me, looking perplexed and asked 'how old is he'.

That is such a complex question. He's got the expressive and receptive language of a 5 year old. The body of a 4 year old, the emotional maturity of a 2 year old and the special interests of a 50 year old(bowling, golf, fishing and trains).

I said 'Charlie, tell him how old you are'. The answer, 'I'm 3 and a half'.

I'm going to cut back on sweets.

He had rice pasta, baked snapper. peas, asparagus and diluted orange juice with the other half scoop of multivitamin.

He then became very hyper and communicative and then violent with Clara. Huge meltdown, then he fell asleep watching Hero of the Rails after drinking chocolate almond breeze and 3mg Melatonin.

Tomorrow I might leave out that second 1/2 scoop at night.

Tonight I need to give him the fish oil through the tube.

I wish there was a way to tame the aggression.

Thursday, June 9, 2011

After 4 months on the gfcf and Feingold diet, I'm still not seeing the improvements in his digestive health. The new probiotics should arrive soon, we are out of Culturelle, which is Lactobacillus GG. The strain is supposed to be great at surviving the upper GI tract and colonizing the intestines. I'm ready to try the SCD diet. Today all he injested was 2 cups of juice, a little bit of cereal, a few rice crackers and some chocolate almond milk. The SCD diet is supposed to help people with bowel disorders, like Celiac, IBS etc. Allowed Foods- Quantities are not restricted if you eat a balanced diet Sugars: Honey is the only allowed sugar product. Not everyone can tolerate it, so use with caution. Veggies: Most vegetables, fresh or frozen and raw or cooked, are allowed including: asparagus, broccoli, cauliflower, artichokes, beets, Brussells sprouts, cabbage, carrots celery, cucumbers, eggplant, zucchini, summer squash, rhubarb, peppers, garlic, lettuce, spinach, mushrooms (unless you have candidiasis), onions, turnips, and watercress. Be careful of raw vegetables when diarrhea is present. Legumes: Dried navy beans, lentils, peas, split peas, unroasted cashews, peanuts in a shell, all natural peanut butter, lima beans, and string beans. Meats: All unprocessed meats such as: beef, pork, chicken, turkey, quail, ostrich, fish, shellfish, lamb, venison, rabbit, and eggs. Some processed meats are allowed, but many require writing letters to manufacturers to verify the absence of restricted foods. Many processed meats contain sugar, starch, corn products, and other disallowed foods. Dairy: All natural cheeses except those listed above are allowed: cheddar, colby, swiss, havarti, dry curd cottage cheese, etc.. Homemade yogurt that has been fermented for a minimum of 24 hours is allowed and encouraged. Fruits: Most fruits are allowed such as: avocadoes, apples, tomatoes, olives, apricots, ripened bananas, coconuts, dates, berries, cherries, citrus fruits, peaches, pears, tropical fruits, and grapes. Nuts Almonds, Brazil nuts, walnuts, chestnuts, filberts, and pecans. Misc: The following foods are allowed: olive oil, coconut oil, soybean oil, corn oil, weak tea, weak coffee, unflavored gelatin, mustard, vinegar, saccharin, and juices with no additives.

Positive Negative

This except is from the TACANOW site describing the effects of methylB12 It is important to understand how to interpret a “true negative” side effect from what I call a “positive negative” side effect. For example, all aggression, biting, hitting, kicking, and tantruming are not bad though it is always undesirable. The reason I say this goes back to one of the main benefits of Methyl-B12 therapy, increased awareness. Soon after initiating Methyl-B12 therapy, most children are suddenly more aware of their wants and needs. They are more aware of what they can and cannot do. They have lived in a state of social void for several years not being able to get what they needed, nor possibly even knowing what they needed. Now the world and all it has to offer is suddenly presented to them and they are overwhelmed, they cannot speak or make their wants and needs known , so therefore they act out inappropriately. The same line of reasoning applies when children may be found crying, moody, or sullen. Suddenly they are more aware of their social needs as well as their social inadequacies. Because methylation affects all parts of the brain including the hippocampus and limbic system, for the first time in their lives, or at least to a stronger degree than ever before, they not only feel their emotions but act appropriately upon them and cry. As a general rule, “positive negative” side effects also diminish or disappear within 2 to 6 months. So today we are oscillating between stimming (watching marble runs on YouTube), appropriate social communication where he looks at my eyes and maintains a conversation not related to his special interests for several sentences and the 'positive negative' side effect of vestibular dysfunction or crashing and emotional dysfunction or tantrums. He took all his supplements, including letting me do a castor oil massage, but won't eat. He had bad diarrhea too, but he looks less bloated. This is exhausting.

Aspie boy meets Aspie girl

Yesterday was a heatwave. 40C with humidex. He woke with repetitive vocalizations 'I want to go bowling' over and over. He was hyper in the park, but the first splashpad of the season is pretty exciting. He's trying to socialize with almost EVERY kid he sees. I still need to follow him around because he can become aggressive very suddenly. There were a group of boys that all knew eachother and were playing too roughly. For example one kid was hitting everyone with a broom on top of the slide, and another wouldn't let him go down. Charlie ended up pushing a girl, I think this was out of frustration. I had to go up and pull him down and sit him down, but he gets so worked up. I also glared at the lazy moms and one of them came to monitor their brats. One of them told me he wanted to hit Charlie in the head with a baseball bat. In these circumstances I always want to scream at the parent. 'My kid has Autism, that is why he has some challenging behaviors, what's your excuse?' The answer of course being lazy parenting. Once the Lord or the Flies left and things quieted down, a girl came with her grandmother who showed a lot of the signs of Aspergers. Hyper aware of animals, water, hand flapping and odd grunting combined with an advanced use of language for her age and an odd prosody. Charlie never showed any aggression, he did tip over her sandcastle when she left the sandbox, but after wards the had the most interesting conversation. Aspie girl 'I was telling you to not touch my sandcastle, and you were not listening' repeated a few times It was like they were speaking the same language, Aspergeese. They had the longest sustained conversation I've ever seen, she understood everything he said. They had no problem with turn taking and seemed really calm with eachother. I wish there was a school for Aspergers. Or a school that partially integrated them in younger grades. It was so sweet seeing him connect with another one of his kind! I now put the carnosine and 1/2 a scoop of his ASD vitamin in diluted apple juice. I must be either Allens or PC or Compliments organic, or he won't drink it. I'll never buy Tropicana again. Then a second juice gets the probiotics and the second scoop of vitamins. I can get the 2-4 ts of ground flax in his cereal or pancakes and waffles. I can't get the fish oil in. I still have the syringe and feeding tubes from when they were newborns. I'm going to try to squirt it in his mouth at night. Yesterday he had 2 bowls of rice crisp cereal and almond milk. I made huevos rancheros for lunch, Clara and I loved it, he just had scrambled eggs with ketchup. I'm going to try to make my own ketchup. For dinner I made hamburgers on Kinnickkinnick buns. He ate a whole one! Plus sweet potato fries and green beans. Motts has a natural juice freezie. After dinner we took some to our park. No behavior problems at all because the kids were all older than 6. He socialized so well with kids 6-10. I wish we could just put him into grade 1 next year! My hope is that he will outgrow this aggressive stage, by the time he is ready for school. He said he thinks he can earn his bowling marble today. He said he'll be gentle with us today. Fingers crossed.

Tuesday, June 7, 2011

Milk Chocolate Infraction

Last night after bowling he had some milk chocolate. Honest mistake dh thought he'd bought dark chocolate and needed to lure him out of the bowling alley. He fell asleep in the car on the way home, so we didn't get a chance to give him Melatonin. I gave him his b12 shot around 10pm. Never again will he EVER have milk. The combo of milk and b12 was brutal. He woke up at 3 am totally hyper and aware of his environment. He wanted to play with toys he hasn't touched in years. He didn't request any repetitive tv or YouTube clips. He read, built with blocks, gave us kisses, said I love you to Clara and us. Today however was brutal, almost like he was hung over. He tantrumed all day. Wouldn't eat his breakfast, wouldn't drink his supplements mixed with orange juice, then didn't like the brand of apple juice I bought. He seemed to understand my new reward system. I brought the bowling marble with me and used the promise of a trip to the alley as a way to prevent him from being aggressive with Clara, the cat and especially other kids. All that I succeeded in doing was creating a massive tantrum in the park. After he tackled a girl and ran into a boy it dawned on him that he wouldn't be able to bowl. Tantrum for at least 20 min. Then when we got home he finally ate his quinoa and brown rice pancakes, drank the apple juice and he was back in the house and calmed down,he watched bowling, marble runs and screaming eggs on YouTube. Once Dan got home and the realization that he wasn't going bowling hit him again another tantrum ensued. I left to go and get another brand of apple juice for his night supplements of melatonin and Culturelle. I made cucumber maki rolls, oven roasted wild salmon, broccoli, and Ians chicken nuggets. Charlie is now calm, creating imaginary marble runs and machines and has accepted that he'll bowl downstairs. The good news is that he is aware of his surroundings more, he's searching for critters in the yard, wants to read books again, is asking us questions about parts of the house and sounds hears, he's noticing other babies. He hasn't asked for or played with trains all day, although they are being eclipsed by bowling and marble runs. I wasn't expecting b12 to produce such huge developments and challenges at the same time. I suppose most parents go through these challenges and it must be progressing towards a more typical path in development.

Monday, June 6, 2011

Day 3 of methylB12

So he's regressed back to his horrible park behaviors from last year.  Last night he tried to push a little girl off the slide.  Dan removed him kicking and screaming and took him back to the house.  Later on I asked him why he did it.  He told me 'it feels good when he pushes kids'.  BINGO!  He's now got the communication ability to explain why he is aggressive.  The good sign is that he is noticing all the kids in the park, and trying to socialize, but when he doesn't get a warm response, he resorts to physical connection, cause it feels good.  He's not mad at the kids, he just needs to connect and provoking them physically gets a response, but he doesn't have the empathy to be concerned about a negative emotional response.

He wanted to go to Hillcrest Park today. I prefaced our visit with a clear consequence.  If you touch/push/throw sand we will go home. Just use your words to ask kids what their names are, and if they want to play with you.

I followed him around to facilitate social interactions, and he was pretty good, except he threw sand at one girl.  When I had my back turned and was putting Clara in the stroller.  He punched and spat at a kid.  The dad totally freaked out at me.  I asked Charlie why he did it, and he said he wanted to go home.  DOUBLE BINGO!  I suddenly realized that I've been unknowingly re-inforcing his agressive behavior.  What I thought was a consequence (home or quiet time on the bench with me) is actually a reward. Home is his favourite place on earth.  Sitting on a bench with me is also a big reward, away from his peers.

As I walked home from the park, I wondered, WWGCD, (What Would Geneva Centre Do).  The answer is a reward system. One that rewards good behavior with things he enjoys.  After lunch, I told him that if he could be gentle, and not hit/push/crash/throw sand/spit other kids and his sister, he could go bowling. 

He immediately wanted to return to Hillcrest Park (yikes the scene of the crime) to earn his bowling reward.  For the afternoon, he did not show any agression, and when he was ready to leave, came up to me and asked to go home, so he could go bowling!!!

While Dan took him to Kipling Bowlerama (it was a special needs bowling league night by co-incidence), I came up with a reward system.

He will get one marble for everyday without aggression towards other kids and his sister.  If he gets 5 marbles in his container, then he gets to choose from a selection of special activities.  I cut out pictures from the Toronto Parks and Rec FunGuide, and the MEC catalogue and the Globe and Mail Travel section.  Pictures of bikes, rock climbing, canoeing, fishing, hiking, Ontario Place, The Zoo,  bowling, yoga etc.  I laminated them, added some velcro and made a choice board on a small accordion file folder.

Dan has selected 4 activities he is willing to do this weekend, so Charlie gets to choose his reward for being a gentle friend who uses words not his body to interact with kids.

Sunday, June 5, 2011

Day 2 methylB12

He woke up today at 4am, complaining about needing a diaper change. This is a good thing. That means he is now aware of the sensations of peeing himself at night, and is finding it a discomfort.  The only problem is that after going to bed at 8pm, he'd already had 8 hours of sleep (thank you 3 mg of Melatonin) and cannot fall asleep again.  So he asked to watch Mighty Machines (repetitive special interest that helps calm his brain enough to sleep). It took him 2.5 hours to calm down enough to sleep, then slept from 6:30am-8am when Clara woke up.

I will give him 2 mg of melatonin tonight at 8pm.  Try to get him on the potty before he passes out. Then he should sleep 9pm-5am, and wake needing to pee etc. I'll put the remaining 1mg of melatonin in his water by the bed, so that it will help him fall back to sleep.

He woke up and had excellent eye contact.  However, he awoke in a meltdown.  He wanted to go bowling(another special interest).  He would not have breakfast, or accept that he had to go to Grandpa Trudeaus first.  He is complaining about being dizzy. However, he is making eye contact and expressing himself very well.  He has nice long sentences and is telling stories from the past few days.  He is crashing more.  I think the dizzyness and crashing is a vestibular issue.  Dan hung him upside down and did wheelbarrow this morning and he has been rolling and lying down the past two days. 

So in summary, methylB12 has done great things for eye contact and social communication, but his vestibular issues, GI and emotional regulation are worse.

Perhaps this could be a die off effect. As the probiotics kill yeast they release more toxins into his body?

Ill give it one more day, then contact the Naturopath.

Saturday, June 4, 2011

Today was his first day on methylB12. Not great. None of us were in good moods though. We might have exhausted ourselves yesterday going to the ROM then hosting friends and family till around 9:30pm. The weather was bad and cold, maybe the change in the weather had something to do with it.

He had lots of meltdowns today, he crashed into a little 1 year old than was over. He also complained of being dizzy. He wouldn't use the toilet, he had 2 episodes of diahrrea. Hopefully things settle down for him and these side effects are temporary.

The b12 shot was easy to administer. He woke up at a decent time I gave him the same breakfast and supplements as the day before. Today I added ground flax to his breakfast and lunch. For lunch I made the Sunday morning pancake recipe from ADHD/Autism cookbook, plus bacon, fruit salad. He was a handful. Hopefully the effect of methylb12 will mellow out tomorrow on the second day after the shot and he will behave like yesterday. Or I read in the Dr. Sears book that he might have a hyperactive metylation cycle. I'll see what tomorrow brings.

Friday, June 3, 2011

Today we started implementing the treatment protocol recommended by a Naturopath named Sonya Doherty who specializes in treating autism and ADHD. Her website is http://www.treatautism.ca/ She has some fantastic info and links on her website.
I was able to purchase most of the supplements through her, but not the Natren probiotics she suggested. I found the probiotics on amazon.com, but they are also stocked at:

Second Nature, 2170 Bloor St. West, 416-915-8269
Supplements Plus,  2304 Bloor St. West,  416-766-2084
Whole Foods, 55 Avenue Road, 416-944-0500

While I wait for the Natren Healthy Starter kit to arrive, I picked up Culturelle from Habers compounding pharmacy at 1584 Bathurst St. Just north of St. Clair. This pharmacy supplies methylB12 injections. 

For the past three nights we've given him 3mg of Melatonin in some juice at 9pm. Today he woke up very quickly, was alert not groggy, he remained upright and made eye contact while calmly communicating.

I was able to get a urine sample in the potty, which is very hard to achieve first thing in the morning. The urine sample will be shipped to Great Plains Laboratory in the U.S. for an Organics Acid Test.

http://www.greatplainslaboratory.com/home/eng/full_oat.asp

'The Organic Acids Test (OAT) provides a metabolic “snapshot” based on the products the body discards through the urine. These small, discarded organic acid molecules are byproducts of human cellular activity, the digestion of foods, and the metabolism of gastrointestinal flora. At certain levels, organic acids in urine may be indicators of toxicity or “markers” of metabolic pathways. Metabolites of yeast or gastrointestinal bacteria appear against the background of normal human metabolites and provide an assessment of yeast and bacterial activity.

For breakfast I gave him organic strawberries, Van's gfcf waffles and maple syrup.

I made a smoothie with 2 organic bananas, almond milk, organic strawberries, frozen blueberries. To it I added:

1 500mg capsule carnosine
1 scoop of ASD multivitamin
1 teaspoon of Nordic Naturals ProDHA liquid in lemon
1 capsule of Culturelle probiotic

He wouldn't drink it because of the lemon flavour.

I gave him some strawberry ProEFA capsules, but he chewed them, instead of swallowing them, then spat them out.  I need to get the Nordic Naturals Children's Chewables, I know he likes them from the sample he tried from Dr. Doherty's conference.

I added the carnosine, multi and probiotic to his apple juice and he drank it without any complaint.

I noticed an increase in eye contact today, a decrease in repetitive behaviors, an improved emotional regulation.  He had 1 meltdown at the ROM, because it was 3pm and he was tired and ready to leave.  He did not display aggressive behaviors in the park today at all.  For the past week, he had been chronically aggressive, needing constant behaviour interventions.  On Monday he hit or pushed every child in the park.  Today he did not show aggression to anyone!  He had a very healthy well formed poop in the potty.  No diarrhea.  He also went pee in the toilet three times today.

For lunch I packed some rice crackers, gfcf cookies, turkey bites and juice.  He actually requested to join  us in the cafeteria.  I had assumed he wouldn't want to sit and eat with us, so I made plans for him to stay with my mom. 

I made bbq chicken and antibiotic-free ribs with Asian slaw and potato salad for dinner. He ate the unsauced chicken, ribs and potatoes.  He chose to sit with the group outside, even though another child was inside playing.  He played with two other children for  the rest of the evening without requiring  adult behavioral intervention.  Just last night, while playing with the same child, he could not be left alone, and required constant behaviour intervention. He hit him and crashed his trike into him. 

A very significant event occurred after dinner.  He asked me to cut his hair.  He sat down outside for about 5 min and allowed me to give him a complete haircut.  I have not been able to cut his hair while he is awake until now. Occasionally he would let me bribe him into letting me snip once while he watches YouTube.  Requesting a haircut then sitting through one is enormous progress.

Tonight I gave  him his first methylB12 shot while he slept.  I can't wait to see the child that greets me in the morning!
Charlie is on a diet free of gluten, casein, corn and soy. In addition, we follow a Feingold diet, so no food colours, preservatives, flavours, msg etc.   For more info on these diets, check out the research.

Dr. Dohan was the first to discover a connection between celiac and schizophrenia. Or the first to suggest a gut-brian connection.
http://www.uthsc.edu/neuroscience/faculty/C_Dohan.php

Dr. Feingold discovered a connection between additives, colours, flavours and artificial sweetners and ADHD
http://www.feingold.org/

This is the most comprehensive guide to the gfcf diet.
http://www.gfcf.com/

A Canadian reseracher has discovered a connection between proprionic acid and autism, this acid is produced by enterobacteria and also added to many foods as a preservative to inhibit mold and bacteria growth.
http://psychology.uwo.ca/pdfs/autism/MacFabe%20etal07.pdf

This research group from Sunderland University are conducting double blind controlled studies on the gfcf diet.  They support the opiodpeptide theory.  This is similar to the leaky gut hypothesis, or that a damaged intestinal wall and unhealthy gut microflora are allowing partially digested proteins, or peptides into the blood stream.  The peptides from gluten and casien mimic morphine and have a drug-like effect on the brain.
http://www.espa-research.org.uk//

I cook everyday from scratch, but often rely on baking mixes and store bought baked goods.

I implemented the gfcf diet the day after we received an Aspergers diagnosis on Feb 13 2011. The behavior change was immediate. Less aggression, especially towards us before and after meal times. His social communication improved, he started to toilet train, and stopped craving baked goods. The most amazing thing happened when I took him grocery shopping for the first time after the diet change. Instead of demanding cupcakes he requested radishes and fish. Even now when I go grocery shopping he asks for fish. I've been using the Seachoice iPhone app to help me select fish that has the least toxins, and is environmentally sustainable. This week I bought some wild pickerel from the Dupont Christie Loblaws and pan fried it with rice flour and made a gfcf mushroom sauce served with zucchini, carrots and rice. He loved it and had seconds.