May 7
Well we're back from the coast and all our appointments. The naturopath (Dr. Bratt) reviewed the France lab tests and discovered a few things Luke is deficient in. Some of the other results seem quite skewed which she is attesting to the chelation process that Luke is going through. We'll continue what we are on, adding Iron and another Folinic Acid supplement. We can decrease his cholesterol supplements from 6 to 2 a day, based on his bloodwork. We can also bring back eggs into his diet, but to do so very carefully and monitor his reactions (if any). We can also bring back bananas and gave him one already (that he wolfed down) without any concerns. We are DEFINITELY doing hyperbaric oxygen therapy this summer as it's the next most beneficial step. The question is where and how much? It will be between $5-7500.00, which we don't have. Luke's dad mentioned a golf tournament to raise funds. We'll look into this and other fund-raising activities; when we get a chance!!
The EEG at Children's went amazing. Luke is quite the trooper. He sat on daddy's lap for the head-marking and paste-applying. Then we (me and Luke) lay down on the bed while the wires were connected. Within about 5 minutes of everything in place, Luke gently fell to sleep. She let him sleep for about 20 minutes then woke him up and cleaned him up (note to self: drink big coffee AFTER the EEG, not before!!). The subsequent meeting with the neurologist was very stressful and frustrating, partly due to Luke's cranky behaviour, the doctor being an hour late, and our lack of sleep. She basically assessed the EEG and said he was still susceptible to seizures and to keep him on the drugs. I was a little upset by this news and proceeded to tell her how we don't think the medications are doing anything, and that the DAN protocol (naturopathic treatment) is responsible for stopping the seizures. (In November 2007, the neurologist had increased Luke's seizure medication to the largest dose possible for a 3 year old and it triggered a grand-mal seizure, so they dropped the dose drastically over a 4 week period—a dangerous way to wean, should be done much more slowly—shortly after that we lost faith in the hospital doctors and went the naturopathic route and within 2 months on the naturopathic treatment Luke's seizures were gone. So you cannot tell me that reducing the anti-seizure medication dose was what stopped the seizures). I started to explain about the typical deficiencies/overloads in children with autism (ie B12, B6, mercury and other toxins), but I felt too stressed to think clearly and to properly explain all these biological inadequacies of children with autism, so I ended up getting flustered and a little angry. Luke's dad also got his back up, mostly about the inconsiderate treatment. It seems that every time we meet with the neurologist we have to suffer through an inquisition about Luke's entire history and what meds he is on and what dosages. They have his file - about 4 inches thick- why not read it beforehand. Maybe that would cut down on the ridiculous wait times. It's like they don't realize or care how tired Luke must be after being sleep deprived for the EEG and then waiting around for hours for the always late appointments.
Anyways, I also asked about recommending hyperbaric oxygen therapy and she said they cause strokes, and we laughed and said, seizure medications seem to cause grand-mal seizures. She also said there was no scientific evidence that it was beneficial, and Luke's dad said it was just on the news last week that double-blind studies have been done and prove that it is incredibly beneficial to children with autism. She wanted to see this report and tried to access her computer which didn't work. I jokingly asked her that if it was proven would she be willing to write out a prescription for HBOT for Luke so that BC Medical would cover it... haha. She just said she would look into it and get back to us. (Speaking of scientific evidence... the one drug Luke is on, called Lamotrigine, says it should not be given to children under 16 years old... there's no way they can study the results of these drugs and the side-effects or damage on these little people. We forgot to bring this up in the meeting of course).
I also told her we have numerous tests from labs in the US and in France that show Luke's deficiencies and how we've been supplementing these and he's improved dramatically over the past year. She was very interested in the test results (this woman needs paper), so we will send her the documents, along with the HBOT study results.
Sometimes I'd like to have these professional doctors walk through a day-at-the-hospital; and I'd also like to know what they would do if it was their child. All we really want is a little more respect and consideration. I'd also appreciate seeing an EEG result and having it explained. I will be requesting all the EEG results from the past 4 years and seeing if I can get another expert to decipher and explain them to me.
I have to admit, on a happy note, that the nurse who assists our neurologist was very nice. She got Luke to respond to her in ways I've never seen him react. She asked him to run up and down the hallway. She asked him to point to his nose (easy), and then use his other hand (he did). She asked him to walk on his heels (he did), and walk on his tippytoes (he tried). He tried to hop (won't let his feet off the floor). She asked him to raise his arms, up and out (he did). She asked him to stick out his tongue, and to move it from side-to-side (he did). It was fun to see him not only comprehend so quickly, but respond correctly so quickly. The very sad part for us is that she was another new nurse... we get a new nurse everytime, so she would not have known that last year at this time he could do NONE of these things.
After this appointment, we decided to cancel our appointment for the following day with the Biochemical Diseases department of Children's Hospital. They were merely doing a follow-up of last year, and that was just a "what are we doing right" information session for us to fill them in on our protocol. We felt the time-consuming wait would end up being fairly pointless for Luke's benefit, so we decided to give the appointment to another child who would need it more. I will, however, be sending a package of test-results and information to this doctor as well as our neurologist, in order to educate them on the natural treatments that are working.
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On another note, the most recent BI we hired is no longer working with us and we are interviewing a new person today (Ms. S). We look forward to a new team, and continue to appreciate all the women who work with Luke!!!
May 12
Dr. Wagstaff appointment: Luke has an allergy to latex so we need to get his nose-pieces changed on his glasses (he had little red bumps on the bridge of his nose). We also noticed red ears on Sunday after feeding him his second banana, and it turns out he's not allergic to the bananas, but to tyramine which is in a number of foods. Luke's dopamine and group sugar levels are still awry so the desensitizing for these things will continue. Also, he needs Chavita 6 and Emvita 20 ("blue bottles") again (on his third round of these). These not only help stabilize his pituatary and adrenal glands, they help his pancreas. A side effect is that they also chelate the heavy metals. The doctor did not test for anything new (like viruses or vaccination damage). Status quo, I guess. I did get a chance to ask about the "teeth grinding", and he said this was related to the dopamine issue. He said Luke may always have a dopamine issue and that he will be studying a new way to test for levels of body chemicals which may actually reveal that Luke is not even producing an efficient amount of dopamine. I gave the doctor copies of the France Lab results which I hope he will review; as well as the latest allergy test results. I asked about the EEGs/medications again. And his response was to request an interpretation from our neurologist about exactly how much activity there is? Big spikes mean seizures... but are they medium spikes? little spikes? microscopic spikes? Is there a change in the level of activity? How many "seizure-like" events are in a given amount of time? (in comparison to the previous EEGs). I will be sending a letter to our neurologist requesting this information. Perhaps Dr. Wagstaff can decipher the results and give us a more informed position as to whether or not the medications are helping or doing nothing at all.
I forgot to mention the two best things that happened: Dr. Wagstaff said at one point: "All your hard work is paying off"; and "He's really, really with us". These comments made my day.
May 14
Just a short note. It's really unbelievable, and I'm sure people think I'm crazy because we are so excited..... LUKE BLEW A BUBBLE TODAY!!!! The bubble wand type of bubbles. You have no idea how long we've been working with him to do this; it's an absolutely huge deal!!! Thank you again God! Way to go Luke!
May 21
A lot's been going on! Got a call from Richmond Hyperbarics and they've offered Luke a spot in their study of the effects of hyperbaric oxygen therapy on children with autism. It will be Monday-Saturday 6-7:30pm starting June 22, and ending July 23. Catch is, of course, that it's in Richmond. So I will be staying in Abbotsford with both boys at my parent's house (they're THE BEST!!) and they'll watch Joel as I commute with Luke to Richmond every day from about 4-8:30pm. The total therapeutic hours would be 40 (which is the minimum recommended) and I go in there with him, along with a couple other families. It will be quite stressful, but it sounds like I'll be surrounded by supportive family and friends and we'll get through the 5 weeks together. The total cost is $2800.00 which is quite the savings off the usual price, so we are relieved.
Our one concern is that Luke will have his ABA program interrupted, but we'll be talking to his Behavioural Consultants about solutions, and our prayer, of course, is that the HBOT treatment will improve Luke's cognition in order to learn at a quicker pace, along with all the other many physical benefits.
May 25
Just a side note about finances: A few months ago a very special person donated a large sum of money for all our naturopathic bills. We just want to acknowledge this individual who is not only generous, but a caring and wonderful person. On that note, just last week Tuesday I realized we'd have to come up with $2800.00 quickly and although we were approved for a line-of-credit with our bank, the money actually appeared more miraculously. Within 5 days we received $300, $1000, $600 and the remaining $900 from a variety of beautiful people. I cannot tell each of you how much you mean to us and your generosity overwhelms us. We have great faith in God, and this just affirms His plans and hopes for Luke. Truly and unbelievably amazing.
May 29
Have to mention that the other day I told Luke that it was "Show and Tell' and I asked him what he wanted to bring. He thought about it for a bit, and then signed "book"... so we picked out a few of his favourites and he finally settled on "Bubblegum Delicious" a collection of wonky poems. Usually I find something and tuck it in his knapsack, so it was really neat to have Luke participate, think on his own and reply.
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OK. Change of plans. We are now heading down to the coast for the HBOT treatments on Monday June 1. Yes, 3 days from now. It works out better this way as we'll be in the smaller chamber with just one other mom (and her twin 3-year-olds) from 12-1:30pm every day. The timing is much better for the commute from Abbotsford to Richmond, and Luke's dad does not have much work in June so he'll be with us to help out as much as possible.
Because of this new schedule, today was Luke's last day of preschool. It was a tough day because it was so sudden and unexpected. We got a little teary-eyed. Ms. M. sure has a soft spot in her heart for Luke and we are very grateful for all she's done and for documenting his journey this past year. Thanks also to the great preschool teachers. Everyone's so impressed with Luke's progress and we look forward to going back to the same school in the fall.
Got a "run-down" on the ABA program and how to incorporate it into Luke's play over the next 5 weeks. Thanks to S. for teaching me!
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