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Luke's dad was feeding Luke a banana for dinner (Luke's not feeling well), and he put the banana on the spoon and put it in front of Luke on the table (but not on the plate). Luke picked up the spoon and put it on the plate, so he figured if he can do that, he can pick up the spoon and put it in his mouth. So with a little coaching, Luke did it! Woohoo! He did it 3 times, but then the banana fell and the game was over. Hopefully we'll be able to work with this system until Luke learns to feed himself completely. Wouldn't that be amazing.

AND the other day Luke was "tooting" so I asked him if he wanted to go sit on the toilet (kind of joking, like yeah-right). He kept tooting, so I mentioned it again. I was feeding Joel at the time, and he kept bugging me to get up and go with him somewhere, so I said fine, stood up and said "do you want to go sit on the toilet?" and he walked me there (he led). When we got there I showed him how to pull down his pants, and then I lifted him onto the toilet. He kind of fell back in a little bit, and it scared him a little, so I'm not sure if I've ruined the opportunity?!? Oh well, it was still something. I guess we should get an "insert", but I would like to talk to the consultants first on their potty-training methods first (forgot to ask them on Friday).

I picked up a couple more books from the library on GFCF diets, and a book by Temple Grandin (a successful business woman with autism). I'm currently reading a book about a father who's daughter has Asperger's, and Luke's dad's reading about DJ, a young man that was featured in a documentary a couple weeks ago on CNN. By the way, if anyone finds any GFCF cookbooks in the thrift stores, please pick them up for us – thank you in advance!

December 2
I was feeding Luke his snack at the play-table this morning before his nap, and I put the banana on the fork and on the table in front of the plate as daddy taught us yesterday. He picked it up, put it on the plate, and then picked it up again and put it in his mouth all by himself! He did this for the whole banana except two pieces that I had to help him with. Wow. He also did two pieces straight into his mouth, without putting it on the plate first.... I think we're onto a new way to eat! Woo hoo!

December 5
It's early, and my mind is spinning as it often does, so I thought I'd update the blog. Yesterday we interviewed Ms. A., who lives on our street, and after an hour we pretty much all agreed that she is definitely in. She's already working with two other families so she knows what she's doing, and because of her past 2 months experience with other children with autism, she had some interesting and positive things to say about Luke (which is also why we like her :). She mentioned Luke has great eye contact, Luke seems to engage us in play, he can sit for quite a while, he is cute (understood, of course, but had to mention it again!), and she was quite amazed that at one point (takes a bit for him to warm up), he touched her hand and her shoulder. Personally I could tell he was acting up a bit which seems very neuro-typical ("NT" – typical or normal children). He gets a bit goofy when someone new is around and can either act whiny (trying to get my attention away from the new person), or act up (trying to get the person to notice him). Anyways, she mentioned a bit about the program and how positive it is, and what changes she's seen in the other children in a matter of weeks. We have to interview another person this morning. The plan is that once we've selected the two interventionists, they will be trained, and then they will come to our house a few times before Christmas to get to know Luke and build up some "trust". I believe the actual program will then begin in January.

Yesterday also, I had to bring Luke to the Royal Inland Hospital Lab for bloodwork (Luke's dad did this the past two weeks, but he's sick right now). I just want to let everyone know how much it SUCKS to bring your kid into a lab for them to poke a needle in his arm and take blood every week. He has to have this done to test his electolytes while he's on Diamox, and it's important for us to keep him hydrated. I got to pin my son down on top of me (my legs over his, and hold his shoulders back and keep his other arm out of the way) while two nurses tried to get the blood out of his left arm. OF COURSE they couldn't, even though Luke's screams calmed down to huge sobby sighs, so they had to take a break and then do the other arm. Thankfully they got it in this time, and Luke was "over it" in minutes as we toddled back to the car. I am usually a very grateful and thankful person, but some things in life I have to admit are just NOT FAIR. At a time in Luke's life when we're supposed to take him ice-skating, we get to take him to hospitals time after time. Sorry for the rant...

I just wanted to say that I'm also reading a phenomenal book by Karyn Seroussi which I highly recommend to other parents of children with autism. If anyone is on the fence, or anti-diet, they MUST read this book. Putting your child on the GFCF diet may be a little bit of work, but trust me the change in your child will be worth it. I need to let people know the huge difference in Luke since he's been on the diet:
> reduction in absence seizures from 10 to 3 a day
> better coordination, more secure in his footing, less cautious (he sat on the arm of the couch the other day! and he stood up on his chair at the kitchen table without holding onto anything!)
> better eye contact
> calming behaviour
> not prone to tantrums... Luke would be SO UPSET (inconsolable crying for a long time) when food fell on the floor (if food would fall off the spoon while we fed him). The other day when he was trying to put a spoon of rice in his mouth and it fell all over the floor – he laughed (not sure if that's the appropriate response, but it wasn't crying)!
> he would be inconsolable when he tripped or fell, which he hasn't done nearly as often
> Vocalization is up (although we do attribute a big part of that to the DMG).
> Luke can now sit on a chair / at a table for prolonged periods of time
> He is no longer fascinated by lint (used to pick up tiny specks of lint and pass them back-and-forth between his two index fingers)
> Has started to use utensils
> He has begun to know and watch Joel, to touch him more, bring him toys and even kiss him on occasion (Joel, BTW, adores Luke and watches him all the time)

The biggest deal for most parents (that I've read about) is that the diet has helped their child sleep, improved their bowel movements, calmed them down (reduced tantrums), and improved their eye contact. If your child has autism, you owe it to your child to try the diet which is SAFE, and does not need a doctor's permission. (You may want to contact a nutritionist to see that your child gets all the necessary nutrients – we will be supplementing Luke with Calcium). You may actually first want to get a blood test done to see whether or not your child has celiac disease, as they cannot test for this if your child has been on the GFCF diet already (like Luke); otherwise a biopsy will need to be done to confirm the disease (which is controlled by a gluten-free diet).

Karyn Seroussi's child was diagnosed at 19 months, on the diet, and taking nystatin (to remove the body of yeast) along with ABA therapy for a year, and by 3 years of age the label autism was removed completely. Read the book! Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research & Recovery by Karyn Seroussi. While you're at Amazon (they're out of stock at Chapters), get Lisa Lewis' book Special Diets For Special Kids: Understanding and Implementing a Gluten and Casein Free Diet to Aid in the Treatment of Autism and Related Developmental Disorders. We started with this cookbook about diet, so I highly recommend it as well (it's the one with the amazing banana muffin recipe) The Kid-Friendly ADHD & Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet

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We met with our second interventionist, another Ms. A., and are excited to begin Luke's program asap! We've let the consultants know that we are very happy with our two choices and will wait for their training and schedules to be worked out over the next few weeks. Thank you God for these wonderful women, and we ask for your continued prayers that Luke will learn and improve in amazing miraculous ways!

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Luke enjoyed music therapy again today, although he was not as verbal or as quick to use the "more" sign. Some days he's just not himself, and I've been reading that after the child is on the GFCF diet other food allergies may affect his personality. It will be interesting to see in a couple weeks the results of the 96 food panel allergy testing that the naturopath did.

December 12
It's early morning again... just thought I'd update although there's not much to tell. Luke had another fever on the weekend, which we're sure was due to teething again. This time around he kept touching his teeth, and actually let me "rub" them without biting me :). My instinct tells me that for the first time in Luke's life he is actually feeling pain. And I think he's feeling other sensations as he's been touching his "pp" (on top of his clothes)... at first we thought maybe it hurt when he peed, but then I thought maybe he's actually "feeling" when he's peeing. We'll keep an eye on it and see what happens. The difficulty is that because of the fever (and yes, we gave him Advil right away), he hasn't been himself. He does seem to perk up a bit in the evening so we enjoy some quality time with him, but he's been taking long naps again. It seems like his immune system is taking a beating lately so he's looking a little ragged with dark circles under his eyes. Joel, Luke's dad and I have all taken turns being sick as well this past week/weekend, so we're all a little blue. At least this should all pass before Christmas :).

Luke's dad took Luke to the hospital for bloodwork again this week and amazingly Luke did not cry... resisted a bit, but was very brave. I like to think it's because we are both fervently praying before and during the ordeal. And thanking God afterwards!

On a positive note, Luke's been feeding himself (with his fingers) a bit more... although he still looks at his sticky hands with disdain. I've been trying to teach him for years to wipe his hand on his shirt! He's also been a bit more interactive with Joel... I think they're bonding in their bedroom together. Luke's dad also said he heard Luke say "mouse" (mou) when pointing to a picture-book. It was almost like he said it without thinking... but he did not repeat it.

December 14
It's been nice and quiet here... seizure-wise that is. Yesterday we didn't see any at all, and today only one. He's at the recommended dose of Diamox, and we hope we do not need to increase it. Next Friday he will be at the minimum dose of Lamotrigine. Hopefully, at that point, things will be under control with the medications, so at the first of the year we can begin the naturopath's recommendations/supplements (BTW we discovered our naturopath is a certified Defeat Autism Now DAN doctor! Yay!).

Luke is in pretty good spirits lately, and still has a 2.5-3 hour nap every afternoon. He has been coughing/hacking a bit in the middle of the night, and we hope that is just the residual effects of the two back-to-back colds he's been hit with the last 3 weeks. His poor immune system is taking a beating. He looks a little ragged... and for most children with autism, he's got some dark circles under his eyes. We'd like to get him outside for some exercise (ice-skating on the rink!), but not until his health is a bit more stable.

Luke said "hole" the other day, when pointing to the hole where the straw goes in his drinking box :). It was very clear, and he was pointing to it... with great facial expression. He makes us laugh a lot... especially when Luke's dad was teaching him to sit in his cushy Sponge Bob chair, put his feet up on the ottoman, and cross his legs. Two seconds later Luke did exactly what dad asked of him... and it was so funny to see him all relaxed in his chair. This "imitating" and following instructions is so great to see, and it makes him really teachable (good news for the BIs). He's also very steady on his feet, standing on the couch cushions with no support; reaching way under tables to get his toys (used to not be able to understand where the table was, and was afraid to go under for fear of hitting his head – even if there was tons of room for him to maneouver); and he's starting to move larger things out of his way (like big chairs and Joel's carseat).

Luke does seem to have an issue with food right now and we're not sure if it's more of a neuro-typical reaction (gagging when he eats fish or vegetables)... or if there's something going on with either his teeth (sore from his molars coming in), or from the Diamox which can make food taste funny. This is the frustrating thing about having a child who cannot communicate properly. We get enough food into him to keep us happy, but with every bite we also often wonder if we're doing more damage than good. The meeting with the naturopath will tell us about any allergies Luke may have. The other health news that was on tv was the toxicity of certain plastics on small children. We've been using mini "sauce" containers for Luke's medications since he was 8 months old, and sure enough they're labelled a recycled "7" on the bottom (1 and 7 are not good). So we're rethinking his entire diet and dishes and containers. All our dinnerware is hand-painted in China, so the fear of lead-based paints is also top of mind. I think in the new year are going to discuss some of these changes and more, like a gluten-free toaster (to prevent gluten contamination), and canning our own sauces and fruits from organic produce. And we will probably pare down Luke's food choices to the bare GFCF basics for a while, and re-introduce "safe" foods one at a time. But, for the next two weeks we're going to try our best to relax, have fun and enjoy family and friends over the Christmas season.

The Behavioural Consultants called (to be called BCs from now on), and we will have our first "team meeting" on January 3. This coming week our two Behavioural Interventionists (to be called BIs from now on) will be coming by for a total of 2.5 hours each to get to know Luke.

Talked to the nurse at Children's this week as well, and she said we could skip the Christmas day bloodwork since the labs are closed and Luke's levels have been safe. An early Christmas present, yay :).

December 15
Luke had a great day... no seizures, and a blast at ARCS (playgroup). The teachers were impressed with his increase in vocalization, and one was commenting to her colleagues about how easy-going Luke is. When a game is finished (and she signs "finished") Luke gives back the toys or instruments with no problems. When I came to pick him up, he took my finger and walked me around the room, showing me the area like he owned the place :). We're very happy that they will continue the Saturday sessions in the new year.

We were also in the parking lot at a store today and while Luke's dad was buying stuff, the two boys and I were waiting in the car. Luke said "Grandpa", so I looked where he was looking, and a silver-haired man was getting into his truck!

Arrangements have been made with both BIs for next week Monday, Wednesday and Thursday mornings for some one-on-one time to get to know Luke.

BTW, as an aside... for those of you who know Joel, our "baby" son: he actually climbed up two steps the other day on his knees. And he is only 7 months old (today)!

December 28
Lots to tell as it's been a while. We were on the coast with family for Christmas. Luke began having some really rough mornings: Saturday, Sunday and Monday (22nd, 23rd, 24th) just after he woke up; and by rough I mean an incredible increase in seizures... up to 20 just before breakfast. We'd have to let him lie in bed for quite some time before he really "wakes" up, which usually means that he's sitting up in bed and a bit more active. I slept with him in the big bed for the three nights and it was difficult to watch him raise his head and smile, then his head would drop suddenly as his eyes drooped and he "blipped-out" (we call them blippers, rather than seizures, especially around Luke). At one point when he was out and walking around he seized and fell to the ground, totally freaking himself (and me) out. So we took it super easy for those few days. What we did notice is that he would "come around" soon after having a big breakfast, so we would patiently make sure he would eat all his cream of rice-meal (with fruit) to stave off the blippers.

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Saturday afternoon was our much-anticipated meeting with Dr. A., and she revealed some very interesting information. Luke's blood panel (96 food allergy testing) showed that he was "off the charts" (had a high food intolerance) to ALL dairy foods. Everything: yogurt, milk, goat's milk, cheese, cottage cheese, casein, cheddar cheese, mozzarella cheese, and whey. He also has a food intolerance to gluten, spelt, rye, whole wheat as we suspected. The one thing we were not aware of is that he is also intolerant of eggs. So we will begin a new recipe search and meal-planning routine.

Luke's hair toxicity analysis revealed that he was not loaded with heavy metals as most children with autism (mercury is usually the worst). He does have high arsenic (possibly from the air or our water) and silver (which is not a serious issue). He is low in a great number of nutritional elements such as magnesium, calcium, manganese, potassium, selenium, sodium, strontium and zinc. This is being resolved with a multi-vitamin, calcium and B6 with magnesium supplements (started December 24). The good news about the fairly safe levels of toxic elements is that chelation may not be required.

The results of the urine test were astronomical. Luke has a major yeast issue. This is commonly known as candida and we need to replace this "bad" yeast with "good" yeast. Luke will take a Probiotic 2x a day which will cause the yeast to "die-off" and it will have to leave his body... typically in his poop. The other shock was that Luke has a serious bacteria in his system called clostridia (HPHPA). The reference range is 1-150, and Luke's is at 1469!! His fatty acids are also way too high which means that he is peeing them out instead of having them work properly. We will start Luke on carnitine asap to do our best to get rid of the bacteria and to help him digest the fatty acids.

So we began all of the naturopathic treatments on Christmas Eve, December 24. We are staying at my sister's farmhouse for the week so we thought it was a great opportunity to lie low and keep an eye on Luke. He still had quite a few seizures each morning 25th, 26th, and 27th, but today we did not see any at all!?!? AND he woke up with a huge offensive-smelling, everywhere diarrhea... things are working?!?!?

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Here's an idea of Luke's supplements and medications every day:
At breakfast:
Medications: Diamox & Lamotrigine
Supplements: DMG, Fish Oil, Multivitamin, B6 with Magnesium, Calcium, Protein Powder
Snack time:
Supplement: Probiotics
Lunch time:
Supplements: DMG, Calcium, Protein Powder, Carnitine
Snack time:
Supplements: Probiotics
Dinner time:
Supplements: Calcium, Protein Powder
Before bed:
Medications: Diamox & Lamotrigine
Supplements: Fish Oil

So we have a very detailed chart that records all this!

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Just a personal note on our state-of-mind. Luke's dad and I have been really tired and constantly worried lately and it's been a tough Christmas time, although time with family was great and a much-needed distraction. At one point, however, I mentioned to Dave that I was so tired that I felt like the person in the Footprints poem... and that at this point in my life I really needed Jesus to carry me, because I can't seem to walk right now.

The next morning Dave poured himself a coffee and a bit of cream spilled on the counter by his cup. It looked exactly like a foot. We took a photo because no one would believe us. Now I'm not all about "signs", but this one seemed to be pretty timely and extremely specific... so thank you God for letting us know you're there.

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Came home after Christmas on the coast and a we received a message regarding Luke's first "team meeting" with the Behavioural Consultants and the two Behavioural Interventionists. It will be Wednesday, January 2 at 6:30pm, with his first session beginning Thursday January 3 from 9-12.

During the Christmas break we had an opportunity to watch a Knowledge Network video "The Road Back" regarding 3 families in BC and their choices for treatment for their children with autism. Click here for the link. We are happy with the program Gerard Kysela has implemented. This video / weblink should be given to every parent who's child has just been diagnosed with autism. We found it interesting that there is absolutely no mention about diet or supplements.

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