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August 9
Luke continues more spontaneous talking which just makes us more and more relieved that he understands what's going on. He points out familiar numbers and letters whenever he sees them (on newspapers, telephones, tv). When something is "empty" he looks at me and says "buy more" (ie juice jug). He is incredibly clingy to me and has been quite cuddly lately. He is still quite slim, despite almost a whole bottle of apple cider vinegar... but we'll get his exact weight when we see his pediatrician tomorrow. He constantly wants "help" with everything, so we're encouraging him to do it himself. He's quick to say/sign "sorry" when he's done something wrong and he's getting really great at "taking turns" and "trading" toys. He's still a little emotional and tends to scream or cry out when he wants something, so we work hard at calming him down to "talk" and "tell us" what he wants or what's upsetting him.
I received a whole bunch of books on autism this week and have just finished Leeann Whiffen's story of recovery of her son Clay. Her story is very similar to ours except her son was diagnosed at an earlier age (age 2) and he was no longer considered autistic by age 4... 2 years of intense therapy, research, diets, supplements and appointments. We're reaching our 2 year mark with Luke (diagnosed at 3.25 yrs September 28, 2007) and while we're in awe of the changes we've witnessed, Luke still has a ways to go. I still pray for full recovery and will continue to work towards this, but I'll admit it has been an exhausting and overwhelming ride. Since Luke turned five, there seems to be a sense of urgency as the large amount of funding will end on his 6th birthday; and it is reduced drastically, as the shift of responsibility goes from the privately-hired early interventionists to the public school system.
August 12
Had an appointment with the pediatrician on Monday morning and she was impressed with Luke's progress, particularly his speech. She willingly refilled our anticonvulsant drug prescriptions and also the request from our naturopath for cholesterol and pre-albumen levels. I was thrilled to receive an email directly from her later in the day:
Hi Sandra and Dave,
It was great to see you and Luke today and I just wanted to say that I love the blog. I had not looked at it since before maternity leave so now I am up to date. It is hard to really appreciate Luke’s progress in the office setting so it is nice that I can look at the website and get a better appreciation of what he is accomplishing. It certainly was obvious today that his speech has improved significantly and I love his sense of humor. Also, I find the naturopathic treatments to be a fascinating part of medicine.
All the best and I hope to see you in a year or so.
She is also willing to give my blog to other parents who have children with autism and has been referring patients to Dr. Wagstaff as well.
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On Tuesday a good friend of mine drove Luke and I to see Dr. Wagstaff. Here's my list of questions and his answers, which are always impressive and I appreciate his knowledge and time:
1. How is Luke's yeast? It's high again so we need to give him some new homeopathic drops to control it. We discussed why it would be high again as he knows Luke does not have any excessive sugar in his diet. He was a bit concerned about the "apple cider vinegar" which, given the dose, should not be a problem, but to be safe we are stopping it. It is a fermented product, even in it's miniscule amount; so until we have the yeast back in control, we will stop giving him any vinegar product. (After coming home and wondering where the yeast was coming from I remembered reading that HBOT can stimulate the yeast in some children and cause problems again... I wonder if this is how it increased???)
2. How are his dopamine levels? They are still high, however they are decreasing more and more (each time we go)... we're back on the "blue bottles" (Chavita 6 and Emvita 20) which not only chelate, but work to control Luke's repetitive tendencies. The fixation with "lights, doors, and screws" has actually slowed down a bit in the last couple weeks. The blue bottles are also somewhat responsible for Luke's "hands-in-pants" fixation to stop completely. Excessive dopamine can also be the cause of his teeth-grinding, but we should also check for a left-back lower molar beginning to erupt. I've felt his teeth and there are certainly big bumps just below the surface. Grinding can also be because of a lack of magnesium.
3. What's the deal with wheat infractions? Last week, Luke had a couple small bites of a wheat cracker for the first time in almost 2 years. Dr. W. said it was nothing to worry about, and that if Luke has "a little" bit every week or so it would not be a problem. We will continue to be vigilant about his diet, but will not stress when he accidentally cheats. I am also allowing myself to purchase products now that "are manufactured in a plant containing soy, wheat, etc."
4. Can I give him the other foods now as well? (Corn, soy, chocolate, banana). Yes, except the list of foods that contain tyramine that Luke was treated for last time we were there. This time it showed that he no longer had a reaction to tyramine, but Dr. W. advised to stay off these foods for a while.
5. What else can we do? Chinese herbalist/acupuncture; Sacrocranial Therapy; Magnets; Dirty Electricity filters? He said what he does covers the acupuncture, etc; Yes, sacrocranial but make sure the person knows what they're doing... our local practitioner was highly endorsed by him so I'll make an appointment with her (Dr. W. says she'll give an honest evaluation and let us know if or what we can do for him); Do not do magnet therapy: we, as humans, are used to magnetic fields in the air and to exposing ourselves to solid magnets can be very hard on our bodies... short-term there is some effectiveness, but long-term there could be damage; "dirty electricity" or "electrosmog" suggests the portable phones, tvs, microwaves, electrical appliances, etc. give off toxins that can cause "interference" for children with autism... Dr. W. tested Luke's geopathy and he is not negatively affected by electrosmog. He did recommend "earpiece" phones in lieu of portable ones; but we're not on the phone much.
6. What about Luke's swollen reaction to mosquito bites? Apparently this year the venom of the mosquito is unusually toxic... we should take a wait-and-see approach as to if Luke continues to react badly. If it gets worse, or if doesn't get better.
7. What do I do "naturally" for scrapes, cuts and bruises? We can put "Calendula Cream" on open cuts and use something called Tramil (sp?) for bruises. He also affirmed the Richmond Hyperbaric people's recommendation to rub a bruise right away to massage the blood vessels.
8. I told him about HBOT in June? We've seen very positive results, so he said let's keep an eye on Luke and see if he regresses before we schedule another set of 40 sessions. There appears to be a maximum ("cap") on the effectiveness of the oxygen per individual. Luke may or may not benefit from more sessions, so we'll make that decision later. We've been considering doing another 40 hours in March 2010.
9. How was his studying of brain chemical testing this summer? He said it was fascinating and they will (within the next month or so) be able to test a person's brain chemicals via a urine sample. He is also starting a new biofeedback service at his clinic. Biofeedback is where they can find exactly where in the brain a person needs help and then there are computer programs that will train that specific area and help it progress. This time of therapy was available at Dr. Larre's office (Bosco Centre, Tomatis Hearing); however this specific testing/treatment is going to be the first of it's kind in Canada because it will all be done on-site... test results will not have to be sent to the US for interpretation. We may look into this, or at least have Luke evaluated... but the thought of driving to Winfield (1.45 min) on a regular basis seems a bit daunting/exhausting to me right now. The other new therapy is an injection into the butt of lamb fetal tissue (stem cells) which has seemed to work phenomenal wonders in children with Downes Syndrome and Autism. We did not get into this too much, but this is potentially something we could do for Luke. Luke's dad and I will need to discuss this when we get more information. It is $400/injection, one every 6 months and usually only 1 or 2 are needed. Something to pray about.
10. The Silver Birch is almost finished, so what now? The Silver Birch (plant stem cells) was used (2 bottles) to increase Luke's amygdala which is the fear or anxiety centre of the brain. This stuff has phenomenally helped with Luke's anxiety. The next step, according to Dr. W. is have Luke stay off the Silver Birch for a few months and we'll see where he's at. He MAY need one more bottle, but it's highly unlikely as the max is usually 2, but we'll see in November when we're back. The new treatment we'll be doing is for Luke's frontal cortex, the area of the brain where cognition and memory live. We'll be giving him a supplement (in the morning, 1 a day) called "Ortho-Mind 1.0" (from the same company as the Neuro-Pro from Dr. Bratt). This will act as "fertilizer" on the front are of his brain.
11. What about Irlen Syndrome and Luke's eyesight? He said he would not be surprised if Luke had Irlen Syndrome... which is slangily called "SuperSight". White is a combination of all the colours and Irlen people can see some or all of the colours in white. They need special lenses to detract the colours from the white so they can see like everyone else. They can also tend to see letters and words floating, ie off the paper. Or they cannot see perspectives like typical people do. This is a key issue for those who suffer migraines... sometimes they are born with this eye anomaly, and sometimes it comes about from a head-trauma (in either case they are disturbed by bright white lights and driving at night). This is how he treats his migraine sufferers. To discover if this is a problem you need to do a series of visual (easy) tests. Luke is not at a level yet where he can perform this test, so we won't know until he's older and more capable. One interesting thing to note is Dr. W. mentioned that people with this supersight have strong colour recognition: ie. if a person with Irlen Syndrome has a pair of red pants, and they go to the store to buy a blouse, the visual picture in their head is so clear that they can find a blouse to exactly match the pants. Interesting, hey?
Couple more things to note:
I thanked him for resolving the latex allergy as Luke had a latex seal tight around his neck during HBOT and had no reaction. Also, next time we are asked to bring all his supplements and Dr. W. can test them and see if Luke's built up a sensitivity to any of the products.
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Luke has been talking quite a bit lately, all in context and meaningful. Yesterday morning, with the BI, he was the best he's ever been (according to her)... they played and he dressed up as a dog— Luke has never been impressed with the costumes—and he sniffed and barked and rolled the ball with his nose. He played with the cars/garage and made noises while he filled the cars up with gas; and loved to crash the cars. When we drove to the doctor he said from the backseat "Where going?" — Wow! Also, my friend who drove us was amazed by Luke's talking especially and also his giggliness. He was happier and giggled a lot, whereas he's usually quite somber/quiet. We have a few discipline issues with Luke as he's trying to push our buttons and so we will continue to teach him that "No" means "No". It's a very difficult thing to do because of all he's been through and we're often in shock that he's acting "typical" in so many ways. It's so great to see, but we have to make sure he quickly learns to behave. He said to me this morning "Play Little People", so we did. It's great to have him initiate what he wants to do. He'll often come up to me and say "Luke's turn"... when Joel has something he wants.
August 27
Luke has been regressing and it's been a little disheartening. Ever since we were told the yeast is back I noticed he has been doing behaviours that he did 2 years ago like rolling and dropping things off the table or chairs. And he's been putting his hands in his pants again (not as bad as before, but he had stopped completely). He also seems to need something in one hand again, and likes to have "2" of everything... fortunately he comprehends that this makes no sense to his little brother, so "one each" is fair and he'll give one up for Joel. This is nice to see. Overall Luke is great, and although I was a bit blue for a couple weeks about these regressive actions I tried to tell myself that when you're in a bad way it can only get better. It has somewhat. He's stopped the rolling off tables, just yesterday actually... he looked at me and was going to roll something off and he said "fall, off" and I said yes it would fall off; and he seemed to finally be satisfied that this is what would happen and he did not have to do it again. Luke's dad read a book about how they just do these things over and over again because they want to see what will happen... and then will it happen again? will it happen again the same way? and again? Maybe that's not the best way to explain it... so I hope to get Luke's dad to write on here about his readings lately. He's totally fascinated by Mel Kaplan's book about prism glasses and visual issues. We pick up Luke's prism "therapy" glasses today and are very excited about trying them out. Some of these children's visual perceptions are very bizarre and can be corrected by different lenses.
Luke has been attempting to jump off things, which is great because Joel's been doing "really big jumps" off the couch and stairs. Luke is trying to jump as well but jumping from higher up (1 foot or more) he still needs a steady hand to hold onto.
The physiotherapist was here the other week and we're interested in trying a "weighted vest" on Luke. He seems to respond to some deep pressure and one of the BIs played "hotdog", rolling him up in a blanket and squishing mustard and ketchup all over his body... he seemed to need this after being a bit hyper after snack. He enjoys the pressure and it seems to calm him down... not that he's overly hyperactive, but sometimes he can get a bit worked up. Also with physio, we will be borrowing a tricycle which has the pedals moving when the wheels moving... hopefully Luke will begin to understand to move his legs around and around to get the bike going. The PT was also so impressed with Luke's jumping... especially on the trampoline. She'd like him to "hop" more, so we'll work on that.
The occupational therapist was here as well and she got Luke to undo zippers and do up buttons and fasteners. He seemed focused on this so hopefully we can incorporate this into his program.... zippers he can do, but the buttons still needs a little helo with. We're going to focus on both upper body strength, left foot coming down the stairs (Luke still does right foot only, one step at a time - going up is no problem). We need to get him more used to "wet" so we'll do some more bath games and get his fine motor skills working with bath squeeze toys and sprayers. He will attempt to dry his hands now, and I've been telling/teaching him to dry his toys or juice cup when they're wet (he complains and runs up to me with a towel and says "dry").
We've bumped up Luke's sessions to include another 3-hours on Friday afternoons starting asap. We want to take advantage of the time we have until Luke turns 6 and the funding is decreased. Our BCs are looking for someone for Saturday mornings as well. From what I hear, Luke's doing really well in his programs. He's been "pretend-playing" a lot with the costumes (he's surprised me in a dog, fireman and cowboy costume lately). He'll pretend to be a dog (roll a ball with his nose, sniff things and bark), and he's saved the stuffed animals from the burning tent with his firehose. How adorable is that!
His writing has been improving slowly. The other day we were presented with a "connect-the-dots" and Luke drew a line from A-B-C-all the way to R and it made an anteater! He actually drew the lines himself with no prompting! This is so great. We've been focusing on his ability to draw lines and cirlces so he can learn to print letters and numbers soon... actually purchased the "Handwriting without Tears" package and are eager to start this program when the BCs feel Luke is ready.
August 31
So, Luke STILL rolls things "off the table" but is checking with me first; I tell him he knows it will fall off and that we're "finished" with that game, but he still plays it... but not as often. He's had diarrhea the last few days, so I'm really hoping it's a yeast die-off and he'll be turning a corner soon! On the positive side, I must admit my heart melts when I look at him and smile, and he really sees me and smiles back! He's done this a few times in the last couple weeks and it makes me smile, smile, smile! Luke and Joel are also AMAZING at sharing and using "Please" and "Thank You", with encouragement of course, but still I'm very pleased that they're quite well-behaved. Joel's getting a little bossy, so we'll try to nip that a bit... Luke's so passive and takes a lot of guff, but he's also super-pesky lately too... he keeps poking the "Joel" bear, until Joel yells "Stop it" or "Get away, Yuke!" So there's a lot of typical fighting and whining and even more jumping and noisy crashing of cars, but it's all quite nice because it almost seems typical.
Today I briefly watched as one of the BIs had Luke standing at the easel copying her. She would draw a line and Luke would draw a line freehand all by himself!!! This is such a great big deal, I was beaming with pride. He also drew a "circle" after she did.
Good news about preschool! Luke's assistant from last year, Ms. M., will be with him again this year. We're looking forward to continuing Luke's progress and it's so nice to have consistency and have someone who's already knows Luke so well.
I just finished Jenny McCarthy's latest book and am quite relieved to not only comprehend it all (all the biomedical treatments and science!), but to also know that we are totally on the right track. I've dog-eared a number of pages with suggestions of treatments that I will run by our naturopaths. Overall, I am very comfortable with where we are at.
I did, however, book an appointment with a local woman who does sacrocranial therapy. We'll go Friday afternoon at 3pm and see what she has to say.
I'm looking forward to the team meeting tomorrow as there will be so much to talk about!
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The NBC Dateline Matt Lauer special "A Dose of Controversy" on tv this past Sunday night was a huge disappointment (to me) as it was quite biased and frustrating. For a truer picture of the situation please watch this youtube video, and/or go to www.thoughtfulhouse.org for a follow-up statement from Dr. Andrew Wakefield and the Thoughtful House people. As an aside... we have decided not to give Joel any more vaccinationsl (he had 2 and 4 month and that's it)... we may review this at a later time, but he's 2 years old and full of life... talking in full sentences and absolutely charming with lots of expression!
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