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January 2
Happy New Year.

We went away for a few days from December 29–January 1st, and have been increasingly worried about Luke. He has been having horrible yeast-y poops. I can see why some parents stop the treatment, but it is important to continue so all the bad yeast can be purged. We were holed-up in a log cabin for 3.5 days and Luke was quite miserable. Not only is he nauseated and bloated, he caught Joel's cold and his eyes are infected (glued shut every morning), and his nose is constantly running to the point of raw red skin under his nose and and on his cheeks.

Yesterday, his right eye decides to have a blood vessel pop so on top of everything else he has a big red blood dot in his eye. When he woke from his nap yesterday afternoon he was inconsolable for quite a while. He constantly wanted his sleeves up, then down... (a regular "stim" for Luke, but this time he seemed a little crazed about it). He would cry and cry and then stop for a little bit, then start up again. Luke's dad and I were quite freaked out, but being the holiday there really wasn't anywhere we could go or call. We first put lotion on his arms, wondering if they were itchy (kids with autism can be hyper-sensitive). He would hit his head a bit, and then touch his stomach. Finally we decided to give him some Advil. About 20 minutes later he was much more calm. My intuition tells me that since Luke has not felt pain for much of the first two years of his life, he was actually really experiencing the pain of nausea and sickness... headache and upset stomach. I honestly don't think he's "felt" that miserable before. To our relief, he seemed to pick up a bit and seemed in much better spirits for the rest of the night.

He woke up late this morning after what seemed to be a really long deep sleep. He had another huge yeast poop, so we cleaned him up... his bum, his nose, his crusty eyes and his dry cracked and bleeding lips. He still looks a mess, but is laughing a bit and is up to some of his old tricks.

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Last night I finished Lisa Lewis' book Special Diets for Special Kids and I will be creating a monthly meal schedule that we all can follow. Dave did a lot of research on the internet and discovered some interesting things about how carnitine can control seizures. Did I mention we have not seen a seizure since last week Friday?

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I called Children's to let them know we felt Luke was too sick to get his weekly bloodwork done, and they actually said it was okay, despite the fact that we missed last week's due to Christmas.

January 4
So we've had the "team meeting" which was a couple hours long and a detailed plan of what games, toys, songs, etc. are to be used during the 3-hour sessions. There are "Luke's games" for a short time, then "Luke's break" then "Playtime", and these rotate. He has to learn to "Match" and "Scribble" and "Imitate" and "Shape Sort" and "Puzzle", etc., etc. It is quite intense for the 3 hours. I'm sure the BIs are exhausted afterwards, especially since they're constantly positive and happy and praising the whole time. Luke seems to be "smart" and is catching on really quickly (I'm sure they say that to all the parents – haha).

Healthwise, Luke has turned a bit of a corner I suppose. His eyes are still crusty but not too bad; he has a blood vessel burst in his other eye now, but they both seem a bit better; he has a cough in the night that he seems to sleep through. One problem is he's not eating as well as he used to. He's been gagging a lot, and learned to spit the food out with his tongue. We have to be a bit more vigilant about him getting properly fed, with proper nutrition. Also, no poop today... is the bad yeast out? Maybe the good yeast will grow and he'll look more healthy soon?

January 7
Our BI was sick today, so we had a regular day. Luke's dad is working at the university so it was just me and my boys. They are both definitely feeling better, but still have runny noses. Luke continues to fight at meal times which is so annoying; if not time-consuming. Part of me does believe that this is "neurotypical behaviour" which would be a bit of a relief, if it wasn't super-frustrating. I've been trying to teach him to drink from a cup, and he did a bit today (begrudgingly); so we'll keep at that. In the meantime we've been tracking his "diaper" schedule – check if he peed or pooed every half hour...we get to do this for 2 weeks. This is in preparation for toilet-training.

Luke's dad sent off our first "monthly expense report" to the government, so hopefully it was all done correctly — if there's any discrepancy they will not send us monthly cheques, but I'm sure it is just fine.

I've called the pediatrician to request some blood work to check Luke's glucose levels. We requested that the levels get checked when Luke's weekly blood is taken for the Diamox medication. The naturopath was interested in the results, since we've personally noticed that he seems to have less seizures after eating. It's very possible Luke is hypoglycemic (since his dad is as well). He still has not had any seizures that we've noticed since he's been on all the naturopathic supplements, vitamins, probiotics and medication.

By the way, still more yeast-y poops every day (sometimes twice a day – fortunately Luke only poops in his bed during night-time and during his naps). How long does this last? I left a message with my concerns and questions for our naturopath but she's on vacation this month, so I may not hear from her. At least Luke is feeling better. I've read that the die-off can last from 2-3 weeks, so let's hope we're more than half-way over. Apparently if something IS happening (and obviously something's going on!), this is a great sign that Luke will improve once the good yeast has a chance to thrive.

January 8
Ms. A. was here at 9am and, without prompting, Luke went over to his little chair and sat and waited until she was ready. It was so adorable. She mentioned once again that Luke was very smart (I'm starting to believe her now!)... he has already begun matching objects (on cards) and it's only his third session.

Apparently he's become quite smart about eating too. Mealtimes have become painful... I should never have bragged about how well he ate! He sits on his chair and whines and whines, spits food out, keeps it in his cheek and won't chew or swallow for what seems like hours. Normally this would not be a really big issue... take away toys, privileges, straight-to-bed, or whatever great solution would work... but I saw a seizure today again before lunch and I'm quite convinced that if he eats well, he won't have seizures. So we try every trick in the book... and pray that this phase will end sooner than later.

I did speak with Dr. A. (the naturopath) today about Luke's poops and she assured me that we must stay-the-course. Luke's toxic levels were the highest she's ever seen so she said we may see nasty poops for up to 4 weeks (it's been 11 days). She said that both the toxins from the yeast and the bacteria are finding their way out of Luke's body and the feeling is much like a constant hangover. She recommeneded "activated charcoal" from the health food store, as it would absorb a lot of the toxins and make Luke feel better. We bought some but do not think we'll use it quite yet, mostly because it's in capsule form and to divide the capsule powder in two would be a challenge (he needs a half a capsule three times a day), and because it's black it would be difficult to get him to eat it. She did suggest mixing it with honey or sugar.... so as a last resort we may try it. Luke seems to be a bit better since he's almost recovered from his cold, so we'll wait and see. She also assured me that the blood vessels bursting in his eyes was most likely due to his coughing. And the fact that he had a horrible cold with infected eyes was an unfortunate coincidence. We rebooked with her for Monday, February 4 at 9:30am.

Got a call from our family doctor, he wants to see Luke next Monday January 14 at 3pm. Don't know why, but assume it's a yearly checkup as he hasn't seem him in a very long, long time.

Luke's dad brought Luke for the bloodwork today and he was okay. At least they got the needle in first time with a few tears and struggles from Luke, but it could have been much worse. Good news is that the request for blood sugar levels was in, so they should get those results quickly.

Children's Hospital has sent us Luke's file papers as requested – they came in the mail yesterday. Dr. A. requested them and I think she'll be even more shocked by all he's been through as we already gave her a stack of lab tests and letters from our local pediatrician last time we met. Altogether I'm sure the papers are about an inch thick!

So here's to hanging in there... we'll keep you posted, but trust me, this yeast thing isn't for the faint of heart or faint of faith.

January 9
Much better day today. I relaxed about the eating thing... if he has one or two seizures then that's okay, because the fight at mealtimes isn't worth it. He did not eat much today, but I convinced him to have at least 3 bites of each meal, and I provided fruit that he ate with no problems. Perhaps he is just actually acting like a typical 3-year-old?

He sat in his chair right away when asked to by the BI and was pretty good all morning, although snack time at 10:30 (juice especially) gave him some renewed energy to get through the rest of the morning. As before, he starts coughing a bit at the end of the session (towards noon) since he's quite exhausted. Ms. A. took him outside and he's so not impressed with his new boots, so he whined a lot; but it's great that he gets fresh air. She will do this at the end of every session (and she comes 3x a week M-W-F).

He went to music therapy in the afternoon, and Ms. E. noticed he was really great at turn-taking, and laughed that he sat on his chair whenever an instrument was finished.

Nice part about no seizures (and I didn't see any today despite the small amount of food he ate!)... is that I can wake him in the morning and from his nap with no fear of the 10-20 seizures that he had a few weeks ago. He just groggily wakes up slowly like the rest of us. His poops have calmed down just a little bit, so maybe we've turned a corner? His nose is still a little raw and bloody, and his eyes just a wee bit crusty... but I'm certain he's over the worst of it. Luke's dad, however, isn't feeling too great, so hopefully we don't go for Round 4 of sickness/colds this winter!!!

January 11
Just a summary of Luke's successes this week with the ABA (Applied Behavioural Analysis) Sessions. Both ladies have a lot of fun with Luke and are enjoying their time with him. They each got kisses this week, and are both impressed with Luke's ability to "match" pictures of objects. Today he was at the point of "this is getting so old", so they may have to change it up sooner than later. They both teach Luke to clean up his toys, and now we can sing the "Clean Up" song and we just sit back and watch Luke pick up all his megablocks and put them back into the megablock bag! It's absolutely adorable. Today after Ms. A. left, Luke did not want to take a nap and kept wanting to sit in his little chair. He seemed quite upset that the session was "finished"!

As far as the yeast situation, I thought it was tapering off, but last night's poop was a doozy (seriously — it was a laundry-tub cleanup this morning and a "throw out those pajamas" situation). Ayiyiyiyiyiyi. So we continue to hang in there. The whole house totally reeked, so out came the Lysol spray, and the windows were opened wide. You have to smell it to believe it!

One thing to note that is a really big deal, is that I wiped down the plastic tablecloth after dinner tonight and Luke noticed and came over a little upset but did not have the usual tantrum, drama meltdown that he ALWAYS had. This is phenomenal (and those who've witnessed the meltdown will agree!)

The eating thing is still a bit of a worry. Today he did eat all his breakfast, 4 bites of lunch and 6 bites of dinner, so I call it a bonus day. He does eat fruit at every meal, along with his numerous supplements and vitamins (usually in a fruit sauce). He is a wee bit skinny (worried about weighing him at the doctor's on Monday), but the prayer is that this is all a phase and his appetite will increase again soon. I did notice his bottom right molar has broken the skin which, along with feeling crappy from the toxins, is a valid reason for not wanting to chew too much. Unfortunately, we did see a super-brief blipper (seizure) tonight, but he's still not 100% so we'll wait it out.

I contacted Children's Hospital Genetic Testing department. We can wait until they come to Kamloops but the next clinic in early March is full, so we're going to see if they can get us an appointment in Vancouver. We don't know why they called us about this testing, but assume it may be related to the new chromosome findings they've discovered in people with autism.

January 19
Been a busy week, so I haven't had time to get all my thoughts down. Hope I remember everything!

Doctor's appointment was basically a check-up. He wanted to see Luke and had a couple concerns about his Diamox (electrolyte) levels from the weekly blood work, although by the time we met with him the levels evened out so he was less concerned. He did say we could ask Children's if the bloodwork could be done less frequently.

Called Children's Hospital and our very nice nurse, Ms. C., acquiesed and said we could have Luke's bloodwork done once a month, as his levels did seem to be stable. Woo Hoo. She also let us know that Luke's blood sugar levels were fine, which basically means he's not hypoglycemic.

Luke's yeast-y poops have totally tapered off (no pun intended!) and today he had his very first "normal" poop. He is completely over his cold which is great, however the seizures have returned. The last few days he has had 3-5 in the morning (having a tough time getting up again); and I've noticed one or two before his nap and in the afternoon. Having said that, he is otherwise usually quite alert and quick-minded.

Here are the changes we've noticed since all the naturopathic supplements have been taken, including the Probiotics:
> longer eye contact, really trying to understand what we say
> much better listening
> more interaction with Joel, smiles and helping (helps to feed)
> cleans up toys when asked to
> eating better (not all the time, but for the most part); definitely being more vocal about what he does and doesn't like (actually tasting the food?)
> more vocalization; new strange words: doo-wa-doe?
> very obedient when asked to do things (put things in garbage, helps with putting spoons in the dishwasher, puts dirty diapers in garbage, puts things back when asked to ie "put the magnet back on the fridge", picks things up when asked "pick up Joel's spoon that he dropped off the highchair" — he'll do this repeatedly without us asking as well)
> runs to the door (and laughs) when the doorbell rings (never did this before!!!!)
> goes to the stairs when daddy comes home (says "daddy")... been waiting for this for a very, very long time!!!!!!
> is learning the "help" sign
> lets me put him on the toilet seat "insert" (with all his clothes on to get him used to the idea) and takes the insert off afterwards, and then flushes the toilet
> a little more interested in the tv
> comes out of bed by himself when asked (we took the bed-gate away)
> doesn't take off his socks (used to have to put slippers on to keep him from going bare-foot)
> will drink from a sippy-cup with help; brings it to me when he wants a drink of water (always and only drank from juice-boxes)
> he's much more coordinated... actually standing on the back of the couch (it's against a wall), and being a bit more daring (was always very cautious and kind-of shaky/unsure).
> much less fatigued... getting up earlier and his naps have gone from 2.5 hours to 1! Some days he wants to keep going with his sessions, so after lunch he sits back at his table and waits... I have to tell him the session is "finished" and it's nap time. He's not happy about this, and will come out of bed a couple times in protest... but eventually he realizes how tired he is...

The BIs also noticed a few new things: One said that he does say some words sometimes. They are trying to teach Luke to imitate so they say "Do This" and he has to copy them. He apparently said "Do This" over and over again... but not for mom or dad when we tried to get him to say it in front of us! Also, one day we both left the house and we said "Bye Luke"; and for the next hour while we were gone he looked towards the door and said mama and daddy quite a few times. He has never cared when we've left the room so this is a very heart-warming reaction. One BI mentioned that Luke totally imitated everything she did (during the "Do This" session); however he wouldn't do it for the other BI the following day. A couple of days later he did imitate everything; and we realized he was totally playing her. He seemed actually bored or tired; and basically looked at her like "Just move my arms for me today because I don't feel like playing / I know what to do, but I'm not going to".

One funny thing this week is that I had a girlfriend come over for lunch and he kept grabbing her hand and pulling her towards his little "training table" where the BIs work with him everyday. It took a few minutes for him to understand that Ms. D. was my friend and not a new BI?! It was quite cute... and eventually it sunk in.

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Just a late night addition. At dinner time tonight, Luke began to have seizure after seizure. It was so scary, and they wouldn't stop. He'd be fine, and then "fade"... his face goes serious, he stares at nothing, and his head suddenly nods, and then he's back for 1 or 2 minutes, and then he "blips" out again... we stopped counting at 20... and he continued to have them; one after another. We were beside ourselves with worry, anger and fear. It is so difficult because you'd think right away that you would take him to the hospital... but all they do there is dump him full of medications till he's drowsy and doped-up. So I cried, and prayed, knelt my head down on the counter in the kitchen and begged God for help. When I opened my eyes, I saw the big container of Brown Rice Protein powder and I realized that we hadn't given it to him the last week because we felt he was getting ample protein from his meals. So I quickly mixed a teaspoon up with some applesauce and we gave it to him. Believe-it-or-not, about 10 minutes later he was back to his old happy self. So we thank God for not only hearing our prayer, but answering it so quickly. We will continue to give Luke the protein powder three times a day as before... and keep our fingers crossed. It is SO difficult to have such a hopeful stressfree week, only to be kicked down again... especially when it seems there really isn't anyone to call to help... it's all on Luke's dad and me, who know him best, to figure out what to do. Fortunately, as Luke's dad said... I dialed God, and he answered, as He always does.

January 20
Had every intention of going to church, but Luke's seizures were worse this morning than last night. After breakfast (protein powder and calcium reintroduced), it took more than an hour and a half for the seizures to stop. I saw 10 in 20 minutes, so that tells you how many he had... almost one every two minutes. Again, we discussed what and why, and prayed and finally decided to wait it out. He had obviously been without food all night (12 hours) and the lack of food seems to trigger the seizures. I had also read that a lack of calcium (and Luke no longer has dairy products) can induce seizures, so we're making sure he has the recommended dosage (even though the capsules turn everything green and unappetizing). By 10:30ish, he seemed himself again, and was back to his happy self for the rest of the day. There were a few seizures throughout the day, but nothing as alarming as this morning.

The irony of our situation, as Luke's dad so thought-provokingly stated, is that for Luke's epilepsy we need to "give" him certain "foods" (calcium, protein, fats, etc.) to prevent seizures, but for Luke's autism, we need to "take away" certain "foods" (gluten and casein) in order to keep the autistic tendencies in check.

January 21
Luke still had a shaky day... starting with a few seizures and having them sporadically throughout the day. Tough to say whether or not the protein and calcium are the complete answer, but he was better today than yesterday. We've decided to continue to wait it out, and see if he continues to improve each day.

The BCs came to supervise the BI today, and they were unaware of how much Luke's seizures affect his performance, basically because they were unaware of how his seizures "present". So I watched and showed them when he had a seizure, and Ms. A (the BI) realized she had seen many of those! We also noticed that after he has one, he's uninterested in the game or task and gets it wrong. However, when he's "on" and we give him the time to recover, he seems to get the tasks right. Even when he doesn't have a seizure, Luke seems to need a moment to think things through. This was described as a "slower-processing" rate. If you look at Luke, ask him to do something, and then wait a little bit, he will figure it out, and do exactly what we ask.

January 27
Been a very long week, both good and bad. Luke still has quite a few seizures, however when he's "up" he's really up... so attentive and obedient and fun... and the world's alright... and then he begins to "fade" and has seizure after seizure. Last night (Saturday) was deja vu from last Saturday... constant seizures during and after dinner, but no supplements or medications seemed to help, so we put him to bed. This morning he was phenomenal! Alert and happy, and he even ate well. We put him down for his afternoon nap at 1:00 and he got up groggily at 5:00 (was dead asleep for the entire 4 hours). Then he has constant seizures again into the evening. Anyways, we've decided to sit tight, wait it out and talk to the naturopath Monday February 4 at 10am; and get her opinion on the seizures. I have two "instinct" theories, but they could easily both be wrong. A) he's coming down with a cold (again), so he's weaker, and because he can't breathe through his nose, he's not eating enough to stave off the seizures, or B) it seems that most of the bad yeast has left or is on the tail-end (pun intended :) of leaving and his body is now in an "in-between" stage... waiting for the right amount of good yeast to build up in his stomach; which makes him weak and susceptible to seizures. There just seems to be something missing; something he's lacking that we haven't discovered yet. I did a LOT of research at the Google University this week and have printed out some interesting ideas about vitamins, supplements, fish oils being able to control absence seizures. I will bring these to the naturopath to discuss supplement options. Oh, and here's a weird thought... why did he not have seizures during the entire die-off? They basically stopped the day he had his first huge yeast poop, and they started again the day he stopped the yeast poops. What does that mean?

We've also been having a stressful time getting Luke to eat his supplements, so I found a great handout on how to get your kids to eat them. Click here to read about it. (copyright credit: www.nbnus.com — New Beginnings). We've taken the advice and it seems to go a bit smoother (first a bite of supplements, then a blueberry :).

The BIs are impressed with Luke's abilities. Now that they "slow down" to Luke-time, he is much more responsive in every way. They are wonderful women and while I think they must get tired of Luke after 3 intense hours, they insist that they actually really enjoy him and the time flies because he makes it so much fun. Nice to hear about your kid.

On a lighter note... we've begun toilet-training (now there's a reason for me to have an absence seizure –hahaha). Actually, Luke's been great. We've put him in "underwear" (actually training pants), and we take him to the toilet every 3.5 hours (BCs worked out this schedule based on the every-half-hour checks we did for 2 weeks). We have a little stool for his feet to rest on and at first he wouldn't sit (freaked-out), but now we have to take him off after 5 minutes as he's become quite comfortable on his new throne. He still hasn't peed though. Not quite sure if he "gets it", but we'll keep trying. Today we brought him to the toilet at 8:00am after he woke up; and so we started again at 11:30am (every 5-10 minutes). He still hadn't peed by 1:00pm, so we put him in a diaper and put him down for a nap. This kid has strong bladder control, which I guess is a good thing.

Oh, and Luke's drinking juice from a sippy cup (finally). It seems he's not interested in the juice boxes anymore. Only problem: still won't hold the sippy-cup. Dave tried all morning on Saturday and was successful in gettting Luke to hold it himself (difficulty was in getting him to bring his arms up to tip it up). But, of course, after his nap he was so seizure-y, we didn't have the heart to "force" him to drink himself... otherwise he won't take anything in. A daily battle. When he's up, you can teach him anything; when he's down, you erase all the progress... what do they say? Three steps forward, two steps back.... still progress I guess.

January 30
Up and down week, again. Luke was quite seizure-y on Monday the 28th, and so the session with the BI was gentle and less structured. He had a couple meltdowns and was quite cranky, so we all took it easy on him. Tuesday was much better... more sick (fever/cough) than seizure-y, which basically means he's "with-it", just a little under-the-weather, versus "out-of-it" – having a hard time comprehending. He's been lying around on the couches for the last few days, just not feeling that great. Wednesday he was beside himself with sickness, had to give him Advil to get him to perk up a little – enough to finish the sessions with the BI.

So since he's not well, he decides not to drink at all... not juice boxes, not sippy cups, nothing. I spent the day giving him any kind of "sauce" to get some sort of "liquid" into him. He is quite adamant about what he does and doesn't want. I finally got him to eat some things today, although not without a bit of a fight. He fortunately does eat all his supplements (we put them in baby-food prunes). Sometimes he gets upset, but for the most part he's obedient.

Toilet-training is a bit of a bust. The little rotter decides he can hold it for bedtime only (has training pants on). So we try him on the toilet time and time again... until it's naptime... and he wakes up wet. And then he doesn't go until bedtime... basically twice a day. This kid has amazing control. I wonder if his choosing not to drink is related? We'll keep trying, but we may need some more advice from the BCs at our team meeting next week.

OT Ms. S came by Tuesday afternoon and even though Luke was a bit whiny, she managed to get him to touch different textures. We're trying to give him "sensory training" – get him used to feeling things and touching things with his hands (he doesn't like sticky hands). She tried tissue paper, playdoh, spray foam-soap, brushes, and squooshy balls. He liked the squooshy ball (the BIs use them), but would only touch the playdough with two fingers to pick it up and put it away. He refused to touch the spray-foam and got quite upset when she put it all over his favourite toy-of-the-day. We're going to the centre next week to try some other things... especially work on his balance, swing, equilibrium. Ms. S. said she would be wililng to set up a regular schedule with us for the next little while, so that will be great to count on.

To focus on some positives: Luke will crawl into his bed by himself when it's naptime or bedtime (used to have to "bring" him there). He also does seat-drops on the couch now and laughs and laughs. He watches tv with a little more curiousity (not sure if he quite understands, but he used to never look at it – except for the music on the weather channel which used to totally enthrall and delight him). He goes to the top of the stairs every night when he hears the garage door open (daddy's home!): Luke's dad absolutely loves this!!!! He walks backwards a lot, like it's a new skill he's mastered and he's quite proud of himself. He built a huge tower with me the other day (with megablocks) and loved tipping it over (Luke usually plays differently with toys... blocks he usually stands on end, then tips over).

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