February 5
Been away for a few days....
Since last week Thursday, Luke's seizures have almost stopped. We've probably seen one or two each day. He looks healthy (over the cold); and is quite active and aware. He was really well-behaved at my relatives over the weekend... and his appetite has increased. He is becoming more and more aware of the foods that we eat, so we need to begin changing our diet to GFCF as well.
Went to the naturopath on Monday the 5th and we're happy to report that the seizures have stopped (for now?!). She mentioned that things often get worse before they get better, so hopefully he's "better". Luke did have a couple "yeast-y" poops again last week (Thursday and Saturday), so she said he is still probably getting rid of the toxins and to keep at the Probiotics and Carnitine. Luke has a bloated belly after every meal which means he is still not breaking down the food properly.
She also started him on a few other supplements: Taurine (known to help with digestion, calms the nervous system, supports the body's yeast defense mechanism). It may help with the seizures as well. She also recommened Digestive Enzymes to help with his bloatedness. When I mentioned the research I've done on fish oil being a "cure" for absence seizures, we realized that we had not been giving him the proper dosage; so we can increase the amount to a level that may be much more effective.
We also voiced concern about Luke's liver taking a beating from the chemical medications he's been on since 8 months old, so she recommened Milk Thistle which would help repair and restore the liver.
I also mentioned Ambrotose and gave her information on it and she realized it was a brand name for an immune-support. She said we would not be doing that quite yet for Luke, perhaps later.
I asked about a formula option for Joel because I was not sure how long I would be able to breastfeed (plan to breastfeed before and after work when I go back full-time in April). She recommended a low-allergen formula. We also asked how soon Joel's blood/urine/hair should be tested and she said we should wait until he's 2 years old.
We asked her opinion on the muscle biopsy, whether we should go ahead with it or not (scheduled for April 17). She advised us to ask more questions regarding the treatment if they do find something. We will call Children's to get some more information.
We had read about Epsom salts and their ability to gently detoxify. She said it is a great idea for Luke and we can put 2 cups of Epsom salts in a very warm/hot bath for him... let him soak in it for at least 20 minutes.
We are concerned about a possible neck issue with Luke, as a result of birth trauma. He often had seizures when tilting his head back to drink when he was a baby (8-12 months). He also is not very willing to raise his arms to tip the sippy cup contents into his mouth. She recommended a chiropractor who specializes in children, and perhaps to get his neck x-rayed.
Craniosacral therapy (energetic therapy to re-align the energy of the spinal-fluid throughout the body) can be helpful... we will look into that maybe later in the year. Also recommended is HBOT (Hyperbaric Oxygen Therapy) which we will research as well, but later on this year.
We mentioned that Luke has very cold hands, assuming he has poor circulation and she said we may want to have a MD test his thyroid (thyroid function test). We will mention this to Dr. C. (our pediatrician) when we see her next week.
Luke's dad was also going to look into the local water supply. If it does not meet the requirements for levels of lead, aluminum, etc. we may need to have Luke drink only "reverse-osmosis" bottled water. (Kamloops has a brand-new water membrane filtration system so it may be acceptable quality).
We will be increasing the DMG (doubling the dose) over the next couple weeks to see if his speech will increase/improve.
She also felt his muscle strength which is very, very weak so some of the supplements will hopefully help build his muscles.
All of the new supplements will be started once a week (one at a time). We began the Taurine yesterday, and will increase the Fish Oil next Monday.
*********************
Left a message for the Speech Therapist. Haven't seen her since December, so we're hoping to set up a regular schedule with her asap.
*********************
The BI today said Luke did so well today; he got a perfect score on all the matching games.
February 10
No news... is good news... Luke has been doing so well, I just tell everyone we're on the high of the roller coaster ride. He is so amazing. He follows simple commands (bring me a diaper for Joel, put this back in the cupboard, bring me the remote, let's go to the toilet, fold your hands to pray, time for a nap). He is very obedient and looks intently at us as to comprehend our words. The best part about this is his processing time has sped up incredibly. He no longer has to "think hard" about what we're asking... he does it pretty much right away. He has not had many seizures in the last week and a half, and I've only seen one or two before and after he wakes up. Waking up is great... when I come into the room I tell him to go to the toilet, and it doesn't take him long to get himself out of bed and toddle off to the bathroom (used to take up to an hour to coax him out of bed... groggily with many seizures and he'd want to be carried). He still has not peed on the toilet, but diligently places the insert on and sits there for as long as we ask. We're using training pants, and have unfortunately discovered that he does not mind the wet feeling, so we may step it up to only underwear. At church today he let the pastor's wife take off his coat, and he gave her a hug when asked.... this was a first.
He got his first professional haircut yesterday. Luke's dad took him. I expected them to return home in tears with long hair intact, but they came home successful. Luke looks adorable with his short, layered hair. It wasn't too stressful as he sat by himself in the chair and daddy constantly distracted him with toys. He had to have two combs (one in each hand) and then he seemed to relax a bit. The haircut was free and came with a certificate and an envelope with a lock of his long blond hair.
Made some blueberry muffins (gfcf and egg-free); and crossed my fingers as my baking skills are so crappy lately. Fortunately these turned out and Luke has been devouring them (could be because they contain 1.25 cups of brown sugar?). My bread-making trials are over, for now. After 4 attempts (straight into the garbage), I found a pre-mix at Superstore that works out the best. It looks white and fairly spongy, although it is quite dry. Joel and Luke eat it, so we'll stick with this recipe for a while. It nice to see that Luke's appetite has increased and he really enjoys his new gluten-free corn flake cereal... likes to eat it plain as a snack. Lays Plain Potato Chips are a fun snack that he likes as well.
He has decided he prefers to drink water out of a water bottle (like mommy), however we still have to hold it for him. We had a team meeting on Friday with all the BIs (2) and BCs (2) and we've set new goals for Luke; one being holding a cup. The BCs were very impressed with Luke's progress as he's perfected the matching skill, so now they change it up on him. We will also begin videotaping a session with each BI for review, and for our records.
Wednesday afternoon Luke had music therapy and once again Ms. E. was in awe of Luke's behaviour... how well he listened and obeyed. And he's continuing to comprehend the purpose of the instruments (banging the drum, pressing the piano keys, strumming the guitar); ever so gently and lightly. She was also impressed with his turn-taking skills.
Luke had an hour session with the OT at the Family Therapy Centre on Thursday afternoon and she was so amazing! With much gentle, persistant persuasion she got him to finally go into the big ball box (huge box filled with little balls). She also got him to lay on a huge lumpy pillow for a short time. She sat him on a peanut-ball (peanut-shaped large yoga-type ball), which helps with his balance. She tried a number of different steps, slides, and bumpy half-balls to stand on. It's called Sensory Integration Therapy, and we're trying to help him discover, strengthen and trust his body... to teach him body confidence, balance and coordination. The next appointment with her is for the end of February which is a little disappointing, but then we had the team meeting and some of Luke's new training will involve similar therapy (yay). They have a box full of beans that Luke will have to sift through to find "toys", just like the OT had. They will try different touch sensations like foam spray, playdoh, etc. to get Luke to adjust to different textures. We've also starting putting Luke on a big yoga ball to get him to work on his core strength and at first he hated it (whined and tried to get off), but now I ask him "Do you want to sit on the ball?" and he walks over to it, I put him on and roll and play with him while laughing and he stays on for longer and longer (still a little unsure, but doesn't "hate" it).
Got in touch with the Speech Therapist and she will come and see Luke on Monday, February 18 at 3pm.
February 13
Been a great week for autism, bad week for epilepsy. Luke still continues to have seizures... mostly upon waking (a few in the morning). We leave him in bed to take his time waking up again... and by the time we get him he seems just fine with a residual seizure or two. By the time breakfast is done and the BI arrives, Luke is in top form. He has become almost bored with the "matching" game, as he's pretty much perfected it. After his 1-2:15 nap, however, he tends to have quite a few seizures and it takes a while for him to shake them. It made him quite out-of-it for both the pediatrician's appointment Tuesday afternoon, and this afternoon's music therapy session. It's a shame these two women couldn't see Luke at his best.
Accomplishments:
> One of the BIs began putting Luke on the yoga ball. She discovered (with her other children) that the most difficult position was sitting on the ball and holding him just barely by his feet. So she decided to aim for this with Luke. Two weeks ago Luke would not even go on the ball, and was totally unbalanced and shaky. Today he accomplished this most difficult position, laughingly, with no fears about falling... totally in control of himself and his body. This is amazing.
> Luke is beginning to let us "know" when he's peed in his training pants. We continue to sit him on the toilet, stepping up the skills to having him put the insert in, pull the stool up, step up onto the stool, teach him to pull his pants down, and sit backwards down onto the toilet. He is getting this bit by bit. To me, it does not matter how long it takes to toilet-train... it matters that he progresses every single day in some small way... that's the way it is with Luke and suddenly he's totally mastered the skill and we get to move on to a new lesson.
> Luke is drinking from a cup!!! I talked to him about it the other night, then bought him his own special plastic orange cups (4) and gave them to him. Last night he wanted to drink from it, and he has been ever since. We do still have to hold it and he drinks quite slowly, but we remembered that we often had to hold his juice boxes (seemed like forever) and he was slow to drink at the beginning. This is so HUGE. No more drinking boxes (which contain tin which is toxic)... you have NO IDEA how great this is. We can buy regular juice! I'm positive that he will eventually hold the cup himself and drink faster as he slowly masters the skill.
>
Luke loves to help put the dishes in the dishwasher
> When Luke's at his best I can tell him multiple requests and he obeys quickly... like tonight he was at my feet while I was cleaning in the kitchen and I said "go downstairs and daddy will lift you over the gate" (baby-gate for Joel to block the stairs) and he immediately went downstairs and waited for daddy. This quick response to our requests is PHENOMENAL. It's like talking to a neuro-typical kid!
>
Luke has been looking at Joel a lot, sometimes laughing at or with him. He laughs when Joel tries to crawl over him. 6 months ago Luke did not know Joel existed... no eye contact, completely ignored him. Luke often grabs my hand to get a spoon-ful of food and pushes my hand towards Joel... to feed him.
>
95% of the time when we tell Luke it's time to pray he folds his hands... when he had the autism assessment late September he did this only 10% of the time.
> Luke was interested in the camera today... I showed him the photos I took (the display on the back) and he pointed to them, pressed the buttons to change images and was very intrigued.
> Every time we sat down for a meal, Luke has insisted that we turn the music on. For the past couple weeks, Luke has not requested the music, as this "ritual" does not seem to be that important anymore.
> Luke will put all the pieces in Mr. Potatohead in the correct spots, when asked, and take them out one at a time. And Luke will put up to 4 shape puzzle pieces into the correct openings (circle, rectangle, diamond, star...). Luke's is also begining to imitate more and more.
> Luke will sit and listen to a book being read and actually look at the pictures and seem interested in the stories
> Luke will now hold hands when walking, not just our index finger like he used to do.
************************
Bloodwork at Royal Inland Hospital still sucks (have to hold Luke down) but at least it went quickly... they got the needle in first try (helps if you close your eyes and pray the whole time). At least it's only once a month.
************************
Met with the pediatrician who was unaware of anything that had happened since our last November visit (including Luke's grand-mal seizure and our visit to Children's for the "second opinion"). I gave her a business card that I designed with a photo of Luke on one side, and his logo and web-blog address on the other. She's having her baby at the end of the month, so hopefully she'll have some time to read it. She was shocked by the amount of seizures that Luke has had (especially the days he had 60+ seizures) and she wondered who we call when that happens. I said "no one"... if we take him to the hospital they'll just dump him full of drugs, so we pray and wait it out and rethink/review his diet. She understood our naturopath plan... we're "treating" the autism right now and hope that the seizures abate as a result. If they eventually really worsen we will call her office and discuss alternative medications. In the mean time we continue our naturopath plan.
I mentioned his neck/chiropractor; she warned against having a chiropractor do anything to Luke's neck, and suggested we discuss options with a physiotherapist instead... thankfully the PT is coming Thursday afternoon. I asked about HBOT (Hyperbaric Oxygen Therapy); she did not know much about it (we'll research it for Luke when he's older if we have to). I asked her about the muscle biopsy in April, whether we should go ahead or not; she responded as our naturopath did: our decision, and it's a tough one. I asked about his cold hands/poor circulation and that the naturopath suggested a thyroid function test; she filled out a lab form that I could take right away to the lab since we were headed there for Luke's Diamox bloodwork afterwards. I asked for the latest copies of Luke's file; she gave them to me.
She also looked up Diamox and was unaware that it was used as an anti-convulsant. It sounded familiar to her, and she realized they use it for premature babies to help them pee?!?
February 14
Luke's physiotherapist came over today... and our new goal is to teach Luke to jump. She gave us a peanut-shaped ball for Luke to sit on, and we will show him how to "bounce" on it. She also recommended that we get Luke to reach up high for a puzzle piece so he can practice going on his tippy toes, and then to "squat" to put the toy in the puzzle (so he can learn to bend his knees). Luke has trouble bending his knees to "step down". He also has weakness in his shoulder area, so her other recommendation is to hold Luke in the wheelbarrow position so his upper arms get stronger. She is a great help and we're happy to know she may be starting a swim class for kids with special needs that we can enrol Luke in this spring. She will also look into booking a time at the local kid's gym so Luke can have some private time on the trampoline and other gymnastic equipment. It's so great to have someone help Luke in a physical way... he really seems ready to learn, and is becoming more and more confident/aware of his body. She will be coming to our team meeting March 5 (9-11) to meet the ABA team members, along with our Speech Therapist. It's wonderful to have all these amazing people come together and work together for Luke! So appreciated!!!!!
February 18
Here's Luke's "quirk" list from late October 25... and the updates in bold
> likes "bottoms" of cups, bowls; no longer does this
> likes to drape blankets or towels everywhere; no longer does this
> has to have the linen closet open, and the DVD doors open; no longer does this
> likes to swing things on the wall (pictures); no longer does this
> does not like to have a blanket over him in bed; doesn't mind but we still have to put the blanket on after he's asleep, and sometimes we still find him "blanketless" at night like he purposely crawled out from under them
> usually likes to have something in one hand; yep, still does :)
> likes to turn the light on and off while eating his meals; no longer does this
> likes to turn cars and trucks upside down and spin the wheels; no longer does this
> likes to put spoons/pens down the register in the dining room; no longer does this
> prefers to "roll" pens and crayons than write/draw with them; still rolls them on occasion, but is being taught in ABA therapy to "scribble"
> likes to drop objects behind furniture (beds and couches); no longer does this
> hates the sound of us wiping the plastic table cloth; doesn't mind at all
> is super-sensitive to the words "no", "electrical", and "careful"; is still sensitive, but appropriately... when I say "ow" that hurt, or he's upset when we make him give a toy back to Joel
> gets really upset when he trips/falls; comes back quicker, sometimes is not upset at all
> likes to spin baby food jar lids; no longer does this
> likes to play with the salt shaker; still likes to play with the salt and pepper shaker but only when we sit him on the counter
> likes to balance things (ie hockey stick on couch); no longer does this
> does not call us to come get him out of bed (won't come out himself); still waits for us, but will come out on his own when asked, or when we say "toilet" he gets out and walks to the bathroom
> loves his toothbrush (can brush all day); still likes it, but not as obsessively
> won't drink from a cup; drinks from a cup! but we still have to hold it
> won't use utensils to eat; we STILL feed him, but he will feed himself dry corn flakes all day
> often won't use fingers to eat (doesn't like to get hands dirty); not as obsessive about this... will eat Corn Flakes and non-sticky stuff, and will (sometimes) wipe his dirty hands on his sleeve, or point the dirt out to me for me to help him wipe his hands
> loves music, especially Raffi CD; no longer obsessive about music
> likes to play with a hairbrush or comb; still does, in the bathroom when he sees it; had to have 2 combs in his hands at the hairdresser
> likes to open/close DVD/CD drives on computer, and tap on keyboard; no longer does this
> likes to stand books on end (pages spread out) ; no longer does this – actually looks at the images in the book
There you have it... 4.5 months on the GFCF diet, and 7 weeks on the naturopath/DAN protocol, and 6 weeks of ABA Therapy. Pretty amazing if you ask me.
************************
Lukes still has a few quirks; some of which I'm repeating just so I can see the progress months from now...
> does not like the sound of the garage door opening and closing
> is not a big fan of being outdoors (winter)
> likes to sit on mommy's lap for ALL meals (okay I'm partly responsible for this one :)
> won't pee on the toilet, but will sit there
> likes to stand mega-blocks on end
> likes to play with lids/caps
> won't wave or say hi/goodbye
> won't feed himself from a plate or use utensils
> doesn't watch tv
> doesn't dress himself
> doesn't talk much... few words but very sporadic
> doesn't play with playdoh
> doesn't jump
> has a "thing" for pens
> plays with the kleenex box (puts it on end and tips it over, like the mega-blocks)
> likes to have something in one hand
************************
Luke is still having a few seizures, but only when he wakes and when he's tired.
***********************
Speech Therapist cancelled today, so we've rescheduled for next Monday, February 25 at 3pm.
***********************
ABA BI this morning said Luke is getting bored fast and is starting to "play her". We've got an email in to the BCs to step up his program if that's what they recommend... these ladies are all amazing.
February 22
It's been such a great week. Luke is really doing well, eating well (sometimes two helpings of meals!), and looking so much healthier. He's trying to sign, although he seems to get confused by the few that use both hands together ("more", "pray", "help"), but he does try. Luke is fun and happy and surprising us everyday. Yesterday he waved goodbye (a slight rise of the arm) to Ms. A; today he dug his fingers into the bin of beans with no sensory qualms, digging for the toy; he has learned the art of turn-taking; and he understands "matching" (they used brand new images today and he matched the appropriate ones on the first try); and he's actually enjoying the winter-walk outdoors (hated/whined about it two weeks ago).
***********************
As you know, food has been a bit of a struggle, especially for me to create edible lunches. On Saturdays I make some kind of GFCF muffins, GFCF pancakes, and a loaf of GFCF bread (keep in mind all of these cannot have eggs either!). These last us the week, so we are managing. Today, however, Dave and I were tired of cooking and desperately wanted to have "restaurant" food. We called the best Indian food place in town and sure enough he had some GFCF food items on the menu! So we picked up their butter chicken, biryani, vegetable pakoras, and beef samosas. The biryani (rice with chicken and vegetables) and vegetable pakoras (vegetables battered with chickpea flour and deep-fried) are GFCF! I wondered whether Luke would like them, but yay, he ate some of both. This is very exciting for us!
February 26
Signed Luke up for preschool in the fall in the close-by Montessori program (at the elementary school). Was a little nervous about bringing my "autistic" son to a neuro-typical environment, but Luke was so well-behaved, you wouldn't know there was anything different about him, except, of course, that he still does not talk. He went straight-away to a toy and played with it while I chatted up the teachers... and then he obediently followed me (hand-in-hand!!!!) to check out the rest of the room. We weren't 100% sure about the decision, but had to leave a deposit to secure one of the 3 morning spaces open. It will be from 8:30-11:00 M-F starting September 2. Luke is eligible for a (free) assistant to work with him during the preschool hours. I was so relieved to have none of the women bat an eye at Luke's autism. It was not an issue for them at all, and they thought he was very sweet. The Montessori program is ideal for Luke since it allows the child to develop at their own pace and everything is visual teaching. We will have to work his ABA training around this new schedule.
Monday afternoon the speech therapist was here and she began showing Luke written words on paper with a small picture (ie "circle", "square" and "triangle"). She had 3 wooden shapes that Luke could choose and she also had the written words "in" and "out" so Luke could perhaps visualize the words. She would show him two of the "cards" and he would choose which one he would like and she would give him that block; and then she would show him "in" or "out" and he would put them in their shape-hole. She also pressured him to say the words. He would try so hard sometimes, even saying a babble word that was three syllables in his best attempt to say "triangle". We got him to say Grandpa, and he said "Yaaaaaaa", and a few other somewhat obvious words, and a few other not-so-obvious word sounds. It was quite exciting, and quite interesting to hear him really, really trying to talk with his limited sounds. We will continue to listen for Luke's words. Ms. L. will be here for the team meeting next Wednesday and we look forward to some pre-scheduled times with her over the next two months. We really appreciate her expertise, it's so great to begin working on Luke's speech again! She has known Luke the longest and was SO impressed with his eye contact!
To Luke's dad and I, Luke has been quite incredible lately. He understands so much, and I know that sounds vague... but it's hard to explain. Here's an example: I explained to Luke that we wanted to strengthen his upper arms and shoulders so I needed him to lay down on the floor on his belly so I could pick up his legs and he could walk around on his arms. He looked at me, and then waited a little while and I became distracted by something else. When I looked back he was lying on the floor on his belly, but started laughing – got up and ran away. I couldn't believe he understood my lengthy request! Three months ago Luke would just look at us totally blankly and there would never be a response. Other neurotypical behaviours: Luke is now spitting his food out if he doesn't like it. He NEVER did this before... it's almost like he has taste now and is exerting his opinion. I show him things once and the next time he does it... for example I showed him how to rinse his toothbrush this morning, and tonight I turned on the tap and he put the toothbrush under the water WITHOUT PROMPTING. Prompting is when we move Luke's hands to do what we want him to do (key training during ABA therapy!)... so to have him respond without us prompting is HUGE. Also, I have been reading Luke a book every night before bed... and Luke looks at all the characters. Tonight he was pointing to individual things in the book (fireplace, mouse) and I would name them for him. He would turn the page when asked, and when it was finished he would close it and put it on the shelf. Three months ago Luke would only put a book on end (flared out to stand balanced), with absolutely no interest in the inside pages. Luke has also initiated playing with his hotwheels and hotwheel track that we gave him for his birthday last year. Luke's dad set it up the other day and showed it to him, and today Luke wants us to play with it. Luke has never played with toys appropriately before, but now he seems to understand.
***********************
Children's Hospital called and an appointment for Luke with Biochemical Diseases has been scheduled for Wednesday March 26 at 1:30pm.
|
