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November 2
Luke's dad signed the papers this morning for the account/funding, but we still have no idea if we have to set it up, or if the government does. We put it aside to look at later.. sometimes all this paperwork can be a bit frustrating.

I forgot to mention on Wednesday that during music therapy, Luke said "Mo" (more) twice! He's been signing "more" and "eat" lately... although I'm still not sure he quite understands. GFCF cooking today was a bit of a bust. Made some pumpkin chocolate chip muffins which we don't hate. Also made some home-made pizza, but not a big fan of the GFCF crust OR the vegan mozzarella (yucko)... we'll keep trying...Did finally complete my "artistic" inspiration. Thought you all might like to see the world as Luke does... so here's a short insight into how he "plays"... click here: autismaubjects.

November 9
On Monday November 5, we went to see the naturopath in Vancouver and spent 1.25 hours with her. She requested quite an extensive profile of Luke prior to the meeting, so we were not only impressed with her comprehensiveness, but also her website was extremely informative. When we met, I instinctively felt confident in her, and liked her immediately. She quickly went through Luke's profile, and wrote recommendations on a sheet:
> start the DMG, 125mg a day for 2 weeks, up to 250mg a day for 4 weeks... if no changes noticed within these 6 weeks we can take him off the product
> continue GFCF diet, and as Luke's poops (sorry everyone, poop is very important to a child with autism :), while regular, were often quite hard (we called them chocolate-covered almonds)... they have been sticky and multicoloured since the diet began. According to the naturopath, this means it's working!
> start B6 + Magnesium (1 a day)
> to supplement the lack of dairy, Luke needs to take calcium (with Magnesium + Vitamin D) 100-150mg 3 times a day
> start a multivitamin without copper
> continue "Cod Liver Oil" pills (aka DHA + EPA Total Omega 3s)... we've been giving him Nordic Naturals strawberry-flavoured liquid since early September, however we need to increase the dose from 1 pill to up to 4 pills a day
> refrain from all mercury-containing foods: no tuna
> try to refrain from tetra-pak boxes as they contain aluminum (this is going to be a problem as Luke will only drink from juice boxes)
> I may still have partial mercury fillings in my teeth, which contributed to Luke's toxin problem. I thought I had all my "mercury" fillings replaced quite a few years back, but it seems the replacement also probably contains some metals that may be toxic to children with autism

*Please note: these dosages are prescribed specifically for Luke by a certified ND (Naturpath Doctor); please consult an ND before administering any of these supplements

She also cut a lot of Luke's hair (a lot) – but took chunks from underneath the back. I had been under the impression they could test one strand of hair – haha. She will send this off for metal-toxicity analysis. Then we had to prick his finger and squeeze enough blood for three "test-strips". Thankfully Luke's dad was there, because Luke is very, very strong and although it was a bit difficult, he was not her worst patient (she's been bitten before!!!). The blood will test for allergies (96 food panel). Last, we were given a "take-home" urinary test kit (organic acid test); Luke must not have certain foods 24 hours prior and we must take a sample of the first morning urination.... pack it up, freeze it, and ship it FedEx to Kansas. Ayiyiyiyi...

Then we paid the bill (!)... I will see if part of it can be covered by my work insurance.

The best hope we heard from her was that if we've seen improvements since the GFCF diet has been implemented, it is a great sign that other nutritional changes recommended will help Luke progress as well.

She was great. We both felt comfortable and that this was the right thing to do. The other thing that I've been praying for is simple signs, and I know this might sound silly but I was praying for a parking spot, as finding one in the middle of the morning in Vancouver can be a nightmare. There was one right in front of her office. I take this as a good sign.

We started the DMG that afternoon, and that evening noticed Luke was much more social with Luke's dad's parents; much calmer; slept deeply and was quite a bit more vocal.

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Tuesday morning at 10:30am was the EEG at Children's Hospital. Also prayed for a parking spot and the underground parking garage said "FULL" and there's was horrible back-up with construction all around the hospital. We finally decided to go in the garage anyway, and found a parking spot right by the elevator. Another good sign, I think.

The EEG went as well as can be expected. Luke was fairly calm, but we also made sure he was SO tired as required (sleep-deprived). He screamed a bit again as they strapped him to the bed, but this time it did not take as long to calm him down as they pasted the nodes onto his head. Daddy was with him the whole time, and I'm not saying it was easy, but it was easier than before. He fell asleep quite quickly, and waking him up was not as difficult (they've had trouble getting him to wake up before as they usually only allow him to sleep 10-20 minutes – they monitor seizure activity at it's most active when people are sleepy, falling asleep, sleeping or waking). We went for a quick burger at the cafeteria and then waited to meet with our neurologist at 1pm. She has been known to be up to 3 hours late for her appointments, so we settled in for a long afternoon. Her nurse (new one every time we go there) showed me to a room for the routine run-down of silly questions (read the file!!!). But shock of all shock, Dr. J. came in shortly after! Wow! Was it the fact that the last time I called I said I was interested in a second opinion? It was great to receive the service we received that day. Dr. J. was with us for almost an hour... reading Luke's autism assessment, reviewing his tests. I was concerned that the anomaly discovered on one of mine and Luke's chromosomes was the one recently linked to autism (Chromosome 11)... however mine and Luke's anomaly or "polymorphism" was on Chromosome 2Q and there is nothing unusual about it. Almost everyone has a "polymorphism" on one of their chromosomes. Dr. J. did promise to look into the genetic results (that were done two years ago) and review them with the geneticist. EEG results showed no seizure activity, however there was underlying electrical activity that shows he is "prone" to seizures; and the activity was more frequent than the last EEG in June. We see a few "blips" (seizures) now and then... his eyes just droop so briefly. She mentioned that Luke had a perfect EEG in November of 2006 when he was on Clonazepam, which is why she originally recommended putting him back on it... however we requested that she look into other medications as Luke totally bloomed and seemed to "emerge from a cloud" after we took him off Clonazepam. We discovered it is quite the "sedating" drug, and delays development. Fortunately, Dr. J. understood and recommended Diamox, which works differently than Clonazepam. We filled the prescription and will start it in a week or two, depending on the success/improvement shown by the DMG. As parents, we need to try one thing at a time, and give it time to work otherwise we're dumping so many different things in this tiny boy's body and we may not know what is exactly working.

What Dr. J. kindly informed us is that the only way the epilepsy and autism are linked is that they are symptoms of an underlying brain "cause" or problem that we have not yet been able to discover. She recommended that we once again pursue investigative testing. She will schedule an MRI, as well as a muscle biopsy. For both of these, Luke will be sedated, and unfortunately they can't do them at the same time. She will also refer us to biochemical diseases (whatever that means); and she also requested more bloodwork and another urine test. She also promised to speak to her colleagues about Luke's case.

We mentioned the decrease in seizures due to the GFCF diet, and that we would possibly be interested in the ketogenic diet. She called a nurse to come and talk to us about the diet. It is something we may consider if the Diamox does not control the seizures (which we will know in 6 weeks time). The nurse was so nice and helpful, and answered all our questions. For those that don't know, the ketogenic diet is 90% fat / 10% protein and is made of up lots of whipping cream, believe-it-or-not. I asked if they could administer it without dairy (as the dairy-free diet has been working for Luke), and they said it would be possible. It is very, very strict, a lot of work and we would need "training" at the hospital for a 4-day program when we choose to begin it. There are some recommended books that we will read to learn more.

We also met with the BC Epilepsy representative, who gave us some more information on their services. She's very nice. She recommended requesting respite services so we could make more time for each other through everything (good idea!).

One interesting note is that Dr. J. explained what "above the threshold" meant in Luke's autism assessment. There were three methods used to assess Luke and in two of them, he was "above the threshold". She explained this meant he did not meet the criteria for autism. And while it may not be necessary to exactly label him "autistic"; it is a blessing to be able to receive autism-funding and services for his delay in development. All I care about is that there is hope, and that even more hopefully, Luke may be able to shake the label of "autism".

We left her office to go to the lab, and the lab nurse who had to put the urine bag on Luke was snappy and mean. After a great day of service and friendly, wonderful, concerned people (this was a real treat for us – thanks for everyone's prayers)... it was hard to have the last contact of the day be such a bag. She almost ruined the day, but we chose to remember all the positive things that happened, and felt sorry that someone in a children's hospital had to be so mean. I suppose everyone has a bad day, but I believe that the parents and children at the hospital need to always be treated with tenderness and respect.

*************

Wednesday was Luke's music therapy and he was extra-shy and extra-tired. I had to wake him up from his deep-sleep nap to get there on time. He had to sit on my lap again a bit, but he did drum a little. According to Ms. E., he was much more focused on her (did not look past or through her as most children with autism do). He also said "More", and often put his hands together with the sign for "more" when he wanted her to play more music. It was a gentle day as he wasn't in top form – catching up from the sleep deprivation of the EEG the day before; as well as any sleep lost while sharing a twin bed with daddy for two nights at G&G V's house :).

*************

Ms. S. called today to say that she and Ms. K. will be here Tuesday at 9:15 to meet our OT and ST, and stay a little longer to play with Luke.

*************

Luke's dad and I actually have a babysitter lined up for Saturday night, so we will go on a much-anticipated date!

November 10
Luke attended ARCS (music playgroup) this afternoon from 1-3pm which is usually his naptime, but he had an early nap (10-12pm) so he was ready to go in the afternoon. We left him there to play with 3 other children and 2 wonderful teachers (I went grocery-shopping with Joel; while Luke's dad watched some informative videos on autism in another room). One teacher led, while the other sat with Luke and helped him "join" in as the children took turns, sang songs, wrote numbers on the chalkboard, etc. I don't know exactly what all transpired (very difficult for me not to be involved!) but the the music therapist, Ms. E., said Luke is a very happy kid – she could not get over how happy he is! and at one point he looked around for his parents, and was heading for a meltdown, but ran to Ms. E. with arms out wide – so she returned his hug and then he seemed fine. He did this again at the end of the session (I witnessed him hugging her!). We totally appreciate these teachers' enthusiasm, expertise and passion in helping Luke and these children interact and learn together. This is a program that will continue on Saturday afternoons for the next five weeks.

I'm writing this as we returned from "date-night" at a local downtown restaurant... we have the best babysitter, and enjoyed a worry-free evening of connecting, talking, relaxing and enjoying a delicious dinner. This is something we will try to do at least once a month. It is so amazing when we communicate and stay on the same page as parents.

November 14
Monday was a stressful day as we had strapped a urine test bag onto Luke the night before, and he woke up with a huge poop. Ayiyiyiyi. Long story short, we got a minimal sample, froze it and shipped it to Kansas for analysis. Hopefully it will be fine; we should have the results from the naturopath in a few weeks.

Yesterday (Tuesday) the OT and ST came by with great suggestions; the OT brought a new "fat-handled" spoon with the thought that Luke would feel more comfortable and confident holding it. He was a bit leery. She also brought a blue foam tube that she put over top of the metal spoon. He was not impressed with either and would not eat any more oatmeal, until FINALLY when he had no choice but to choose between the two... he choose the fat-handled one. We gave him a small piece of blue foam to touch and get used to, and we will try both options this week. Dad's been working hard to get Luke to say or sign "more" or "eat" before he gets a bite of any food. Luke also said quite a few "words" just to impress the ST. The ST also brought a few samples of "PECS" (small laminated squares with images on them: ie banana, grapes, raisin). I will be taking photographs of the familiar items and create our own "PECS" for Luke this week. She demonstrated the process: Luke must take the picture/image and hand it to me or dad in exchange for the item. We will practice this with just a few images over the next two weeks. We rescheduled with them both on November 22 at 10am.

The behavioural consultants were supposed to join us, however due to Kelowna's power outages, they had to unfortunately cancel. They did mention that they would be conducting interviews that afternoon, so we will wait until we hear from them to reschedule.

This morning we were supposed to go to Luke's first day swimming as a "Crocodile" but we chose not to go as he's still getting over a cold. It was a very good decision as he was way too tired and cranky and had to be sent to bed for his nap much earlier than usual. In the afternoon he enjoyed music therapy again and Ms. E. noted that Luke was more interactive than ever.

We've noticed over the last week or so that Luke has been using sign language a lot more, saying a lot more "words/vocalization", and when he seems quite tired and "prone to seizures" we can usually prevent them by giving him an extra snack.... gives him energy to keep going and we're down to one, maybe two seizures a day (they are just a millisecond of an eye-droop, so they are difficult to detect although Luke's dad and I are with him all day and can sense when he's "prone": he's usually sitting, quiet and staring). He's been quite fun lately and much more interactive with Joel. Hopefully we continue to see improvement.

November 15
Luke had to go to RIH for blood work and we're not sure if he screams from the actual needle or from being restrained! Unfortunately this will be a weekly thing for a while.

Luke also said "JoJo" tonight (our nickname for Joel)... although it did kind of sound more like "DoDo" — haha.

November 17
Luke had his 2-hour session (music playgroup) this afternoon and the report from the teachers was: "Great job Luke! Spent time observing the other children; a lot of close proximity play. He appeared to want to stay in the same area as peers. Was imitating some actions. Independently did some glueing after modelling!! Lots of vocalizations." His worksheet showed that he glued a blue square on the paper... not where it was supposed to go, but the point is he "independently" modelled what the teacher demonstrated. Yay Luke!

Tonight we got him to imitate "Dada", "Mama", "JoJo"; and introduced a new one "Papa", just on a chance, and HE SAID IT! It's supposed to mean "Grandpa"... we're working on it so he can say it for his Grandpas at Christmastime. Okay it kind of sounded like "Baba" but the fact is he really tried and he's imitating!!

He plunked around on the piano quite a bit tonight; and he's "toying" with his new cup with a straw, but has yet to use it (so we're still giving tetrapak juice boxes until we can convince him otherwise).

I made him his own PECs tonight (click here to see them): banana, music (CD player), apple, juice, bath, diaper, granola bar, toothbrush, tv, piano, uremol (lotion for his eczema), sauce... I've printed them onto magnets, cut them into their individual squares, and put them on the fridge. It's called "Picture Exchange" so Luke must take a picture from the fridge, give it to me, and I give him the object in return. We'll see how it goes :).

November 21
Went swimming on Monday, but he was in the wrong class so we decided to just spend the time getting used to the water. Luke was quite nervous/anxious and clung to me pretty much the whole time. Towards the end of the half-hour he was on his own a bit.

Tuesday morning Luke was quite lethargic and wouldn't eat his breakfast. We put him down for an early morning nap and went to check on him around 10:00 to find out he had puked in his bed. We cleaned him up and went to see Dr. C., our pediatrician as we had an appointment already scheduled. We updated her on the latest and requested a copy of Luke's files. We also asked her to fill in her part of the Disability Tax form. She was wonderful and surprised us with the news that she will be going on maternity leave in March (Congratulations!). We booked a follow-up appointment for February.

Tuesday afternoon Luke was still very warm, tired with really rosy cheeks. He had a very long afternoon nap, but we roused him for some liquids and fruit. In the evening just after Luke's dad left for a church meeting, Luke was sitting on my lap resting. Suddenly his knee began to shake, then his arms and then he arched and I realized right away he was having convulsions – a febrile seizure. I put him on the floor on his side, and waited for the convulsions to stop and for him to come-around, but he remained unconscious with his eyes rolling and his tongue clacking/smacking. I called his dad twice on his cell-phone but it was on vibrate so he didn't answer. Then I realized Luke was not coming out of this right away so I called 911. The lady called for an ambulance and told me to take off any of Luke's clothes to get his temperature down. She told me to unlock the front door and turn on the porch light. She waited with me on the phone until the ambulance arrived. I called the church on my cell-phone for his dad to come home. The paramedics arrived quickly and asked a few questions, and in the meantime Luke was starting to come around. He was so disoriented, dazed and eyes-glazed-over. He sat up, and let the paramedic hold him. I explained about his seizure disorder and the autism diagnosis, so they were aware that he does not communicate and may show resistance. While they were heading to the ambulance with him, his dad arrived and went with Luke. I showed up later with Joel and some toys/clothes. Luke puked in the ER once and after that dozed off a bit while we waited for the ER doctor. Slowly Luke came "out-of-it" and he seemed well enough to take home. We put him in our bed right away and crawled in with him for the night. He slept for a good 4 hours, but then seemed quite restless and his eyes would roll unnaturally as he went in and out of sleep. We all made it through the night and in the morning Luke seemed more like his old self... just a bit weak, a little tired but not as warm, and his cheeks were not as red. I called off all appointments today (swimming, music therapy) and informed both Children's Hospital and our local pediatrician. The advice we received was to give Luke and any or all children with seizure-disorders some Tylenol or Advil at the first signs of a fever as it can prevent a febrile-seizure. While it seemed like a very scary situation, I was very calm and had read so much about these, that I was not hysterical or fearful. Luke was still breathing and that was the most important thing. Many, many, many children have fever-seizures, and now we know that we must be more vigilant/aware of Luke and his temperature whenever he seems quite warm or lethargic. We thank God that in the big picture, this will hopefully be a one-time incident and was not life-threatening. We are grateful to the woman on the other end of the phone (911 call), the paramedics, and the nurses/doctors in the ER.

When I spoke with Children's Hospital they mentioned the regular Thursday bloodwork is required only after we begin the Diamox, which we have not yet decided to start.

Ms. S., the behavioural consultant called to reschedule. She and Ms. K. will be here Friday November 30 at 2:30 in the afternoon with resumes and to spend some time with Luke.

The local pediatrician also called to say that there is a one-year waiting list for Dr. Y., the opthamologist in Kelowna. We decided that was okay as we're not panicked about his eyesight issues quite yet (he has a stigmatism on one eye, and is myopic – near-sighted). They will call in the spring with an appointment.

Dr. F.'s office called from Children's and we set up appointment with him. I asked him who he was? and the reply was: he's a pediatric neurologist and a second opinion on Luke! We'll take it!

November 23
It's been a scary couple of days since Luke's seizure as he's been extremely weak (unsteady walking), shaky, and has been having quite a lot "mini-blip" seizures (I saw almost 10 in a half-hour period when he seemed quite sleepy yesterday). For the last 3 days, he's been waking up late in the morning (9), has a good breakfast and is back in bed by 10:30 and doesn't come out until 3:30-4pm... and then he has a big snack and an even bigger dinner, and seems to perk up and is back to his old self all evening. We realize this is not unusual when a person is recovering from a seizure... it seems to take quite a bit out of them, and some may need to sleep for hours, some for days afterwards.

We've decided, after much agonizing, to start him on the Diamox. So many "what-ifs"... what if he had been on the Diamox a week ago when first prescribed by the neurologist? Would this febrile seizure have happened? We can only follow our hearts and intuition, and keep communicating and agreeing together on each decision. We've stopped all naturopathic nutrients just for the meantime and will begin introducing them one at a time over the next few weeks. He is still on DMG twice a day (naturopathic nutrient) which we strongly believe has been the source of his increase in vocalization.

On top of everything Luke has been through this week, we think that he is teething... a molar must be coming in as his cheeks are rosy-red and he had a "teething-poop" this morning. He seemed to be chewing his dinner a little more carefully tonight. Just as an observation: he seems to have been getting quite a few molars in the few last weeks; the coincidence being that the teeth began to come in fast and furious ever since we started the GFCF diet. Not scientifically sure if there's a connection, but my intuition tells me there is.

When he's "up" he's a hoot, and tonight he brought Joel a toy with no one asking him to. He also has been trying (while laughing) to pick up 2 objects with one hand (and has one in the other hand). He's succeeded a few times and is quite proud of himself. He said "bed" last night, while lying in bed. I asked him if he wanted to sleep some more, and he actually, feebly, put his hands together to make the "more" sign! He also tried desperately to say "Grandma" today but it still comes out sounding quite funny. Lately he has been allowing me to touch his hand and guide it somewhere (like on the piano keys, playing Do-Re-Mi). He has always resisted when we touched and tried to manipulate his hands, so this is a blessing. He's also learned a new sign "sit" (first two right fingers on top of the first two left fingers)... and he uses it whenever we say "sit" (especially "sit on your chair!").

The OT & ST were here on Thursday and were surprised to hear about Luke's febrile seizure and concerned about his shakiness, so they played with him for only a little while... he actually had a little energy to engage in some of Ms. L.'s toys/activities. He only lasted 20 minutes or so, and we put him to bed. The OT mentioned that we should try to do "hand-over-hand" with Luke's eating habits, and start first with a snack that he really, really likes... have some on a plate a little ways away and two spoonfuls close by. He has to try by himself with the spoon first before he can have the rest. We will try this as soon as we feel he is fully recovered from the seizure.

We received 5 resumes for our behavioural interventionists. We look forward to talking to our behavioural consultants next Friday about their recommendations. Then we will set up the interviews and hopefully find some great teachers for Luke. Interestingly enough, there is one that seems most experienced and actually lives on our street! What are the odds of that?

We are looking forward to an appointment next week with Dr. F. at Children's Hospital, Thursday November 29 at 3:30pm. Another trip to the coast, so we pray for good road conditions!

November 24
Another shaky morning, but we decided he would go to ARCS (playgroup) so made sure he had a big breakfast and an early morning nap (10:30-12:00). According to the teachers, Luke's attention was amazing, and the music therapist, Ms. E., said his attention has improved so much since she first saw him 7 weeks ago. This was his report: "Luke attended to group activities and was looking to see what other kids were doing. At free play, he and Quinn played beside each other. Luke watched each time Quinn dropped a marble down the structure; then dropped marbles in the structure with Ms. E. He's very interested in what others are doing and seems to be learning in that way. Luke sat in his chair at the table for longer than previous weeks."

When he came home his cheeks were flushed from overstimulation, but after a short nap he was back to his totally fun self. Our latest games, that we usually play every evening, are: I sit on the floor in front of the couch, and I lean far forward (saying "forward"); and then when he signals (pulls me back), I lean backwards (saying "baaaaaaaaaaaaaaaaack" in a creaky voice). He loves it; especially when I lean back and trap him against the couch. Today when we started, I wasn't saying anything and he touched my mouth to get me to talk :). The other game he loves is he'll pull my legs apart in a Vee formation, and then he'll stand between them and wait for me to shut them closed and "trap" him in. He laughs and laughs. He also loves the poem Ms. E. taught us: "Pizza, pickle, pumpernickel, I think Luke-y needs a tickle; On his nose, on his toes, on his tummy where the hotdog goes." He's learning to anticipate the tickle and starts laughing long before I've touched him. BTW Joel loves this game too :).

He let me look in his mouth at his teeth (if I use my fingers he has a tendency to bite down hard). I noticed a new molar top left!

Also, Children's Hospital called to let us know that Luke is scheduled for a muscle biopsy on April 17.

November 29
Sunday was super-scary for me, as Luke was shockingly shaky and had almost constant "eye-blip" seizures. I stayed home with the boys while Luke's dad went to church and I watched Luke for almost 2 hours shake and stumble. I actually took out the video camera to capture his actions in case we had to show someone (if his condition didn't improve). When Luke's dad came home, we talked about what we should do. We thought that perhaps the "reactions" happened right after he had his "concoction" of seizure meds and nutrients/supplements, so we chose to take one thing away at a time and see if he improved. We had been giving him 2 DMG capsules a day, so we did not give him the afternoon dose. He seemed fine all afternoon and evening. Monday morning we did not give him the DMG again, and he seemed so much better than the day before. So now, of course, we're not sure if it was the DMG, if he was just finally improving from the febrile seizure, or if the Diamox was kicking in (started it on Friday night). Anyways, as "they" say... who cares what works as long as he's not having seizures.

Since then he's been amazing, and because we are big believers in the DMG we introduced it again as an afternoon dose (but only one a day) and he's still been fine.

Monday afternoon we realized we were quite stressed out, overwhelmed and losing a little hope/faith, so we decided to pray together (we pray often, but needed to take a moment together). After giving our little boy back to God's control again, we were blessed by not only (and immediately) a phone-call from the naturopath, but also (minutes later) some large cheques in the mail (from clients of our home-based business). God is good.

The naturopath set up an appointment with us for 1:30pm December 22 (Saturday) in North Vancouver (her new office location). She did mention briefly on the phone that Luke had a lot of things going on, and alluded to some viral issues as well. We are curious about the results, but are okay with waiting as it's only 3 weeks away, and we have a lot on our plate with introducing additional supplements, interviewing interventionists, and getting ready, relaxing and enjoying the Christmas season.

Today, Thursday, we are at my parents... getting ready to head to Children's this afternoon to meet with Dr. F., our "second opinion" pediatric neurologist (he's also the resident expert on the ketogenic diet).

Update on Luke: Luke has been playing with small wooden blocks, so I learned the sign for "block" and have been showing it to him just a few times. Yesterday he actually did the sign! This was the quickest he'd ever learned a sign (we had started to teach him the "more" sign – on and off – since he was 6 months old, and he just started to use it often in the last month!). Grandpa and Grandma loved hearing Luke say "Grandpa and Grandma", which sounds a little funny but close enough to be definitely understood! Today we have not yet seen a seizure.

*****************

The appointment at Children's was very strange. We did not quite know why we were called there; one secretary said for a "second opinion" and the other said it was a referral for potentially putting Luke on a "ketogenic" diet.* The doctor was interested in answering our questions, so we gave him our list. He took his time to view all of Luke's EEGs and the following are what we got out of his response (despite having two fussy kids in the room, trying to take in all the new information!).
> Luke's seizures are classified as "absence", not myoclonic.
> The Lamotrigine that he's been on since July 2005 is not working, and may possibly be making his condition worse (may have triggered the fever seizure), so we're taking him off in drastic increments (usually takes 4 months to slowly wean him off, but we're doing it in 4 weeks)
> The seizure Luke had cannot be called "febrile" as that is a term used only for those people that have one or two fever-induced seizures. It is a separate "seizure-disorder" than what Luke currently has, and the odds of him having both disorders is 5-10%. The fever-induced tonic-clonic (grand-mal; or convulsions) seizure is a manefestation of his absence epilepsy. He could very possible continue to have tonic-clonic seizures in the future.
> We will continue to increase the Diamox to half a tablet, twice a day (should be there within 2 weeks). If Luke has a tonic-clonic seizure during this medication change we will notify our local pediatrician and will have a choice of three new medications (each with their not-so-great side effects). If he just continues to have one or two absence seizures, we could live with that.
> Luke's seizures are not a cause, they are a symptom, and not our greatest concern at the moment. The priority concern is communication and autism.
> The doctor thought it was interesting that Luke's seizures decreased while on the GFCF diet, and mentioned celiac disease (which can cause seizures), however we cannot test Luke for the disease as he's been on the GFCF diet (would not be accurate).
> The doctor respected our "passion" for the naturopathic route (for autism) and said it would make sense that after the medication has been switched, and the levels maintained for a couple weeks with minimum absence seizures, we should pursue the naturopathic nutrients and supplements. One course of action at a time (medication first, then naturopathic route) so we know what works.
> He mentioned a couple other possible diseases that they may test for, and said we've been referred to the biochemical diseases expert at the hospital and she is a highly capable and intelligent doctor.
It was quite the overwhelming meeting and it took us a while to digest all the information.

* I have since found out that the referral to this doctor was written up in a letter from our neurologist and he was to be our consult on the ketogenic diet.

November 30
Friday afternoon Ms. S. and Ms. K. came by to watch Luke eat his meal. They were both impressed with Luke's signing ("sit", "eat", "music") and that he ate his whole meal, and brought his plate to the counter. Ms. S. had to look away often as she had a hard time not smiling at how cute Luke was, especially when he was "smirking" and "playing" me by disobeying me, sneaking off his chair while we were talking, and dropping his toys on purpose to get a rise out of me. We discussed the PECS that I made, and how Luke was familiarizing himself with them, but we had not yet implemented the "exchange" concept. At one point when I was disciplining him for something, he picked up the "diaper" PEC (picture) and said "diaper"... we all laughed because he was totally trying to impress me with his saying the word so I would be distracted from his bad behaviour. We went over the resumes of the behavioural interventionists, and they made their recommendations. After lunch they "played" with Luke in the living room, and although it took a bit of time, eventually Luke did everything he was supposed to with the Duck River toy (a whole lot of ducks go around and around in "water" and it makes noise – with a big red on/off switch in the centre). Luke had to learn to turn it on and off, to put the ducks on while it was moving, and to put the ducks on a piece of paper that had circles on it (put the ducks on the circles). I'm not sure what else they were testing him for, but they said he did great. They played a couple more "games", one with a crocodile that they said he liked, and he attempted to put puzzle pieces into a wooden puzzle (fish with a magentic fish hook). Apparently all these games are their way of assessing Luke to see where to start his learning. They said his "eye-contact" was amazing... they usually have to start there with most children; and they said his "joint-attention" was amazing as well... which I think means that he looks at me to get my attention to help him name something, or help him with something. They were both very patient with him and I appreciate their positive-ness. Both are very encouraging and praising of Luke. Oh, and at one point Luke did the sign for "more" when he wanted another duck. I had said that he signs "more" all the time now (whenever I say the word – you'd be surprised how often we say it without knowing!!!); but I wasn't certain if Luke "understood" what it meant... they witnessed that he does understand which is wonderful. Ms. S. and Ms. K. then went through all our toys to make sure we had appropriate developmental ones that they can integrate into Luke's play therapy. They made a few new toy suggestions that I will pass on to our families for Christmas gift ideas. In 2 weeks time the consultants will begin training the two interventionists that we choose (we will be doing interviews next week). We did see a couple of seizures today, but he often gets them when he's tired and today his loud brother Joel interrupted Luke in the middle of his much-needed nap, so Luke wasn't in top form.

Two other signs Luke learned are: "block" (he played with lots of blocks at G&G Bs house); and "pen". I showed him a couple times and he tried it himself. He's so cute when he tries, because he usually has something in one hand, so he makes a deliberate attempt to put it down and then do the sign and look at me with pride. And then I look back at him with praise. Proud, proud, proud!

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