French Immersion

The ultimate litmus test for the effectiveness of Charlie's treatments is whether or not he can thrive in a mainstream public school in a french immersion program.

Last week he started full day senior kindergarten.  25 kids in his class, one teacher, one ECE. No extra special needs support.

So far, we are thrilled. He's making friends, he's having fun. Most importantly, he loves it.

The only issue we had was on Friday afternoon. He fell and had a big meltdown. The factors preceding the meltdown are completely explainable.

It was a very hot and humid afternoon. He was wearing shoes and pants for the first time, after a summer of crocs and shorts.  For kids on the spectrum, a change in seasons and wardrobe can be problematic. The shoes are too heavy, the clothes to hot and itchy. They were playing in the playground, his friend hurt his toe and was bleeding, so he ran to get the teacher. He tripped and fell and hurt his hands and knee. He couldn't calm himself because he was hot, thirsty, tired and overwhelmed with emotion.

He's eating his lunch, but he won't drink water from his water bottle.  I'm going to meet with his teacher on Tues after school to show her some documents and reports and talk about charlie.  I think if he is encouraged to drink from the water fountain.

Supplement-wise, we have noticed an improvement when using only Kirkman brand products. Even Thorne and Metagenics had some impurites that were causing some headaches.

He is doing so well on just:

mB12 shots every 3 days
gfcf probiotics
folinate
oral mB12
Calcium
Vit D
B6
P5P
zinc
selenium

The Dentist

When Charlie was 2 1/2 he had 8! root canals. His food intolerances and weak immune system caused him to vomit a lot. All the stomach acid wore away his enamel. He also wouldn't let us brush his teeth. He needed general anaesthetic for the procedure, and it was very expensive.

It is now two years ago. After 15 months of biomedical and occupational therapy, including oral wilbarger protocol to desensitize his mouth, he is able to brush his own teeth, with the typical amount of protest that can be expected from a 4 year old boy.

We took him to the dentist yesterday. He was anxious, worried that it would hurt.  His teacher told him a funny story about the giant teeth and toothbrush that dentists have.  In the waiting room they had a Dora goes to the dentist book. It perfectly prepared him for the visit.  He was calm, co-operative through the entire cleaning, check-up and x-rays. The dental hygenist, dentist and Dan and I were really surprised.  He was excited to get his three gifts from the treasure box, and then he said "I like the dentist" as we left!??

Unfortunately he has more cavities in his back teeth.  This could be an unfortunate side effect of all the juice with melatonin before bed. Plus the early years of not brushing. It could also be related to dysbiosis and salivarypH? I'm ready to have a no juice after teeth are brushed rule. We'll switch to water at night....see how it goes.

Updates

SO many wonderful breakthroughs to report!

Immune Function and GI Health

This week, my 20 month old daughter contracted viral gastroenteritis.  She barfed 13 times on monday, and 7 times on tuesday. Its now saturday and she is starting to eat solids, and have regular bowel movements.  My son on the other hand started showing symptoms on tues night, at the same time as myself. We both barfed, slept all day wed. However, by thursday, his appetite and bowel movements were back to normal, he was hungry and ready to eat. I could only tolerate jello and ginger ale (I know, I know, don't judge me for the HFCS/red dye).  So, before Feb 2011, all through Charlie's infancy, toddler and preschool years he was constantly ill (average 2X per month) frequent vomit and loose stools. Now, when a really bad GI virus hits the family, he only showed symptoms for 24hrs, and recovered to full health, while the rest of the family suffered for 3-5 days!  I've got the rest of the family on a modified supplement program to boost our gut health and immunity (probiotics, anti-fungals, B vit, vit C, vit E, Selenium, Omega 3s).  I'm kinda jealous of how amazing his immune and GI systems are functioning!

Eye Contact, When Autism Disappears

The next morning after his MB12 shot and his methylation supporting supplements, we get to see this sweet, sensitive, caring, funny, happy, social boy.  These are my favourite momments. These are the times when I start imagining the possibilities for him.  This is the kid I want everyone to see. This is the poster child for early biomedical intervention.  Yesterday, at the park when his sister was sad after she had fallen, Charlie brought her a toy doll to cheer her up.  Autism disappeared. That is empathy and concern for his sisters feeling and wellbeing.  Yesterday, he shared his last sushi roll with me, instead of hoarding it.  Autism Disappeared. Sometimes he'll have a long conversation with me, and maintain eye contact for the entire time. Autism Disappears. Its eerie, I'm not used to it.  His eyes are so big and green, and just like mine. I wish everyone could see those eyes.

Mainstreaming

This year for March Break we took a risk and put him in a Parks and Recreation camp without an aide. Charlie has been doing gymnastics though Parks and Rec for several years, so he was used to the space, and the routine and activity.  He did so well without an aide. He made a new friend. They played together in the park after, and last week he went to a birthday party and his new friend was there. They stayed for hours playing.  The only time Charlie became upset at the camp was when his friend was late showing up on the last day. 

He's attending gymnastics without an aide this session, and its going really well. I've signed him up for French Immersion at Humewood in September.  I will request an EA until he becomes familiar with the space, people and routine, then he may not need one.

Current diet and supplements

I've backed off the huge supplement list, for now. Just to give him a break, and to focus more on diet. At school(Canadian School of Natural Nutrition) we learn to promote the NAG diet first. Natural Alive and Good Quality.  I'm receiving an organic produce box on fridays. We dig into that box, he loves the apples.  The strawberries were amazing too, and brocolli and asparagus are his favorite vegetables.  He's becoming very structured with his eating habits. Its frustrating for us, but I'm proud of how much control and ownership he's taking over his diet. When we go grocery shopping at Fiesta Farms, he insists on having his own cart.  I let him choose what ever he wants.  He usually picks watermellon, bananas, cucumber, brocolli, cauliflower, frozen mixed veg, beef, turkey, juice. Sometimes I'm realy grateful for his choices. Like last week he wanted to buy us some portobello mushrooms. I usually don't buy them anymore cause the kids won't eat them, but I was so thank full he thought of us. They were delicious grilled with a striploin steak.  He eats a LOT of sushi. He'd eat maki and hand rolls for lunch and dinner if we gave into it. I need to start making more at home, cause its getting expensive.  His other faves are mini-pizzas (made on gf tortillas/english muffins topped with sauce meat, mixed veg and brocolli) smoothies (coconut yogurt and milk, fruit), gf oatmeal, eggs, oatmeal pancakes, almond butter sandwiches, Rowe Farms breakfast sausages, fried rice, gf pasta, fish, turkey esp legs, chicken legs/wings, lamb, mini burgers.  I keep everything very simple at home. Minimal ingredients, minimal processing, minimal cooking.  Its easier, healther and quicker. Also if there is an herb or spice he doesn't like, it will turn him off the whole meal, so I keep it super simple. 

We go out to eat maybe 1-2 times per week. Our current faves are sushi, of course. He likes Ajimi at Yonge and Davisville, the all you can eat lunch is very good and affordable. We also love the neighbourhood spot Mazz. He orders the maki boat, with dynamite rolls and rainbow rolls. I'm not thrilled with the amount of farmed salmon he's eating, so I'll try to steer him towards green dragons instead, and cucumber/avocado maki and rolls. I'm also encouraging him to choose brown rice rolls. Which he likes. I order the seaweed salad when we go for sushi. Amazing source of minerals, vitamins, and n antioxident rich liver loving food!

He also likes Vietnamese. We went to Golden Turtle last night and it was perfect. He'll eat spring rolls and pho. I love the dish with grilled shrimp, veg and rice vermicelli with a sweet/sour vinagrette and cold rolls.

We also go out for South Indian Dosas.  Dosa Hut at Bloor and Landsdowne makes an egg dosa the kids love. My fave is the Masala Dosa. They also have a gluten free chickpea/lentil fritter that Charlie really likes. Their samosas are super cheap, but I know they are made with shortening/margarine. I'm avoiding north indian, because casein is a major trigger for him. he'll gorge on Naan and ignore the other dishes, and if I don't order Naan, he'll just eat pappadums. So, we don't bother, I'll just make pappadums at home for now.

Last week after swimming and the park at Trinity CRC, we were hungry and went out for Fish and Chips at Chippy's. Bad move, I think they put buttermilk in the batter. He was miserable the next day. Headache, crying, bad behavior, stomach ache.  A little bit of gluten in a batter (like a tempura shrimp) won't ruin the day, but any casein and we see such a regression!

His supplement routine is now:

MB12 shot every 3 nights, he's been on it for a year....15months is the suggested duration...I'm starting to worry about what we'll do when his scrip runs out. I want to keep going.

oral mb12 on day 3 or 4, SISU 1000mcg

fish oil at night when he's sleeping, we can't get it in any other way

1st juice daily

1/2 SISU magnesium (50mg)

1Kirkman folinc (800mcg)

1/2 P5P (25 mg)

1/3 SISU super B complex, this one has MB12, and P5P

2nd juice

probiotics

Last juice

melatonin - though he doesn't need it everynight, he's sleeping through the night, has consistent wake times!

Occationally- I've been focusing on methylation, so reducing the following, so not everyday anymore

SISU calcium chewable stars

Vit C

Vit D

Zinc

Selenium

Vit E

*NOTE* I've gone back to my product development job I had before Charlie was born, but part time in the early mornings while he's at school, 6am-10:30am.  I take the SISU  Super Bcomplex and folinic and feel wonderful, without caffeine I have energy, clarity.  I'm sure that I have MTHFR and methylation mutations, and they are partly responsible for Charlie's Autism, in combination to the genetic predisposition from his father's side.

Dr. Yasko

I've taken the plunge and ordered Dr. Yasko's genetic test kit.  Her testing will reveal which specific mutations and parts of methylation biochemistry require support. I'm eager to take his methylation support to the next level, now that his gut and immune function is superb, I'm ready to focus on methylation and detoxing. For more info, her book is published on her website.

http://www.dramyyasko.com/

Accepting Other Caregivers and Kids!

Charlie has been asking lots of questions about Daycare, and watching Toy Story 3. Yesterday he asked if he could go to daycare!!! This is the kid, who one year ago attempted and refused 4 preschools, and would not accept any other caregivers beside myself, Dan and my mom. A few weeks ago he let me leave him with Clara's nanny while he played with some friends.  He wants to go to school or daycare full day so he can have 2 recesses, and more time to play outside. This is the same kid who would cry and scream in the playground in the fall and was afraid of any playground that had children in it up until now.  I have to thank the amazing teachers at Holland Bloorview. His teacher Allison is the most caring, loving, smart, calm, experienced, brilliant teacher a kid with ASD could hope for.  She helps him build, create, socialize, imagine, plan, play, create, communicate, laugh, and most of all she accepts him, includes him and celebrates his successes.  

Charlie will continue to go to Holland Bloorview for camp this summer and for afternoon kindergarten next year, then camp the summer after that.  

At times, when he hasn't had any diet offenders, and his supplements are on track, and its day one after MB12, he is not autistic, no one would be able to tell. My hope is that he loses his diagnosis, everyday. 

Good bye agression

Charlie has lost most of his aggressive behaviors. He has become a sweet, sensitive, social, gentle kid. We are thrilled. He rarely becomes aggressive with other kids. I can finally sit down when we are at playgrounds and relax.  The next challenge is helping him navigate the complex rules of friendships.  Lately he has been getting upset with other kids exclude him, or won't play with him.  He'll also get upset if he can't run fast enough or keep up with older ones.  He also comes on too strong, he'll hug other kids when they aren't really into it.

He's making friends though. He's initiating and sustaining play.  This week he played an entire afternoon with another boy, doing things like pretending to go on airplane rides, pretending to be cats and playing hide and seek.  The other mom was just as thrilled as I was at the duration and quality of play the boys were having.

I'm amazed by how far he's come in one year. The combo of biomedical treatments, excellent preschool and occupational and behavioral therapy have turned this kid around.  I can't wait to see how much he's improved in another year.  Feb 2013!

Social Skills

This fall Surrey Place received millions of dollars in funding to expand services to kids who have moderate to mild autism.  Charlie now qualifies to attend this excellent facility!!  He's in a social skills group with 6 other boys his age (4-6) who are higher functioning.  He loves this class.  They have a marble run and trains, and other boys who share the same interest.  He asks to go everyday!  We are thrilled that this service came along at the right time.  They also offer classes on advanced social skills (how to deal with bullying) and also daily life skills (handling money).

Dan, Clara and I enjoyed a dinner out while Charlie was in class. This will be the closest we get to a 'date' for now.

Specific Carbohydrate Diet

Before Christmas I had hit a plateau in Charlie's treatments. Despite being organic, Feingold and gfcf since Feb and giving him all the recommended enzymes, probiotics and supplements, his gut issues were not goof away.

The only treatment left was to try the specific carbohydrate diet. This diet was designed by a dr. Haas and popularized by a university of western on researcher named Elaine gottschal. The diet was originally designed for people with crohns, colitis, IBS etc. However since around 2005 it has been used in the autism community with amazing success. The theory behind the diet is that an inflamed illeum, or lower intestine cannot digest disaccharides, or molecules with two sugar groups. So undigested lactose from milk, sucrose from refined sugar and maltose from grains gets fermented by yeast and yeast overgrowth is responsible for g.I. Disorders.

In order to transition to the diet I had to cook 3 meals a day. Also had to say goodbye to white and brown sugar, and say hello to honey. Goodbye to all the gluten free flours, baking mixes and crackers, cookies and pretzels that were costing us a fortune and hello to baking with almond flour from scratch. I made almond flour muffins and cookies and used it to bread fish and put in meatballs.

After a month on this diet full of organic fruits, veg, meat , eggs and fish, nuts and seeds and healthy oils. My son has lost all of his intestinal symptoms. No more gloating, gas. His.
bowel movements are perfect, healthy. He has finally toilet trained!
I wish I had of done it sooner, but very glad that it worked.

Fave recipes and current supplements

Here are some recipes he likes

Lamb Kofta
1 lb lamb
chopped onion
minced garlic
chopped mint
cumin
paprika
salt
pepper

roll into balls and bake

date and nut balls
1/2 cup of pumpkin seeds
2 cups pitted organic medjool dates
1 cup of organic unsulfited apricots
2 tbl oil (coconut, safflower)
1 tbl water
pinch salt

pulse the seeds in a food processor until they are finely ground
add remaining ingredients and pulse until mixture holds together
roll the mix into little balls and coat them with cocoa, coconut or sesame seeds

He's loving all the meat I got from the Kawartha Ecological Growers Co-op, especially the chicken and lamb

His supplements include:

mB12 ever 2 nights
3-5ml ProEFA every night
5-10drops Sanum Pleofort every night

1st juice (1/4 juice and 3/4 water with stevia)
digestive enzyme
1/2 vit C
1/4 taurine
1 vit D
1 Cal/Mag/Pot/Zinc

2nd juice (same dilution as above)
3 Natren probiotics
1 Culturelle

Final Juice
1 3mg melatonin
1 culturelle
1/2 vit C
1/4 taurine

I'm going to trial more things this month:

folic acid
CoQ19
B6
DMG