Middle Ground

Today brought disappointing news on the chelation front. The latest test results show that the chelating process is not as effective as it was during the first 6 months. It seems he's hit the proverbial wall and now the question is, what do we do about it? We'll have the more formal review w/ the doc on Monday at which time I'll have plenty of questions for him, but in preparation the doc has suggested we look into nutrigenomics as the next step.

Nutrigenomics? Sounds like a mix between breakfast cereal and math class if you ask me.

A quick Google search yields 347,000 results. What? How could I have not heard of this before? Ok, let's narrow that down to only include autism results - we're down to 37,500. Hmm... I should be done looking through all that by the end of the year.

It doesn't take long, however, to see that this approach is, much like chelation, a no-middle-ground approach. You have the biomed camp which is 100% positive about it, and you have the neurodiversity crowd which treats it (and every biomed approach) as akin to child abuse.

I could read all those web pages and I don't think I'd find out much more than that last paragraph said. It's become a war out there between two extremely vocal sides, and there seems to be absolutely no middle ground. Well, here we are. We are in the middle. Who's got the real answers? Is it quackery? Is it a new effective, but as yet statistically unproven, approach? Is it cutting edge or a slippery slope?

Now for more black and white... Has the chelation helped? There is no doubt that Grant is in a much better place than he was when we started. His ability to communicate has increased greatly - both by written word and with his speech. We're still nowhere near conversation, but he is using his words so often now on his own and the list of words continues to grow. His drawing skills have really taken off, and even just in the few weeks he's taken that to a new level. But has it been the chelation? Or was it just school? Was it the diet? Was it the supplements? Nobody knows...

On the home front, the news today was tough as well. Staci and I see things and interpret things in such different ways, with today's news being a perfect example. Staci was heartbroken to hear the results today; she had such high hopes that Grant would be talking soon. I took it more in stride as par for the course; to me, it's just another approach to help get him talking and to help him understand the world around him. We're going to do whatever we can to help him live his life to the fullest extent possible, but the ebbs and flows along the way definitely take their toll. Regardless, we're going to ride it through and we're not going to fall into the ugliness found on either side of the biomed and neurodiversity crowds. It's about what's best for Grant, even when we have to make up the answers ourselves.

Mercury proof?

The first article in the latest Schafer Autism Report, with a study showing that the autism population has a consistently higher mercury level, certainly appears to be a silver bullet. However, a quick Google search revealed no background info and it would appear a bit too good to be true. It'll be interesting to see how this plays out over the next few weeks as the 2 "sides" fight it out.

The article does remind me, though, that I am way behind in my chronicling of Grant's chelation process. While the 1st 4 months went very well, we started to see improvements level off around mid-February, and we also started to see him starting to hit more, we saw his clapping/stimming increase, and his teachers reported that he was, at times, hard to reach. Since this was so different from the previous 4 months in which we consistently heard from multiple "partners" - "whatever you are doing, keep doing it!". So, we did not hesitate and we contacted his Dr.

The Dr. suggested that we immediately stop all chelation and supplements. Either he was reacting to something new in the supplements, or his body was reacting to it differently. We went off everything for about 2 weeks, and have since started slowly reintroducing the supplements to see what might be the cause. In the past 2 weeks, the negative behaviors have gone way down and his vocabulary has started increasing again, so it's pretty clear that something about the supplements, or the combination of them, was not doing him well. It's going to take at least a month to get him back on everything, but we'll see what happens. The only thing I can think of that changed was we introduced Malic Acid earlier in the year, and I believe the brand of Magnesium had also changed.

Today was so exciting though, watching him participate in the Easter egg hunt. There were about 12 kids present, so there were lots of eggs! Each child had their own color to look for, and we are so fortunate to have understanding friends and family who accomodated our request not to have candy in the (plastic) eggs. I never heard one complaint from the kids or the parents - thank you!!

Grant's color was purple, and he understood quickly that he was to only pick up purple eggs. He did great, looking only for his eggs and not giving up till he had all of them. It's so exciting when he stays with a task that long!

In addition, he's been putting more words together to communicate. For example, last night at bedtime he asked (said) water (wa-wa), juice (ju), and then cup (cuh). Yes sir! I did my duty and brought back his requested item. He took a look and then said ice (i). Fantastic communication - 4 distinct words, all used to communicate his needs/wants and they were said clear enough that I had no issue understanding his request. What an incredible feeling that must be for him to get his point across without struggling!!

Chelation update

Yesterday we had our first follow up chelation appt. since early September. The appt. consisted of tracking Grant's progress, discussing any changes to the diet/regimin, making changes to his supplements, and giving him an IV course. Since the last appt., he has had 2 topical treatments weekly (at home).

Overall, the process has gone smoothly, certainly more so than we had expected. For a boy who has hated having extra things (stickers, layers, etc.) on his body, hated dr's appts, hated taking medicine, the list goes on..., he has adapted amazingly well. We would never have believed anybody who told us Grant would allow himself to be strapped on a doctor's table and given an IV, would take supplements twice a day, would keep his sleeves up for the chelation cream twice a week on his inner arms, and would allow us to collect urine for the various tests. Now, it didn't start out like this right away, that's for sure, but he has adapted. We try to explain that we are trying to help, that this is good for him, and I think he understands this at some level.

Even better, because of his very strict diet, we simply had to get him to eat new foods. Grant was the classic autistic boy who would live on chicken nuggets, french fries, and bread. For years, we had tried to get him to eat new things, but until this process, we had not been "forced" to make it work. Over the past 4 months, we have progressed to a point where Grant will eat chicken, beef, and pork. The suprise and excitement never gets old at our dinner table; I can't imagine that any boy in America gets more praise for eating a bite than Grant does. :) He is also a little more willing to try new things on his plate, although we have a long way to go. A few weeks back, Cassidy bet Staci $10 that she could get Grant to eat a baby carrot. We laughed - ha, sure go ahead, no chance in the world he will put that in his mouth. She walked over, picked up the carrot, said "Grant, here, eat a carrot." He took it, put it in his mouth and chewed it up!

We'll have the test results from this appt. (and the urine collection after) in a week or two. In addition, he will now be taking 1800mg of "Phosphatidyl Choline" twice a week. This is a combination of Omega 6 / Omega 3 that is designed to help the cell walls secrete the metals being removed by chelation.

I should also add that we've been pleasantly surprised by the office and staff. We weren't quite sure what to expect when we started all of this, but everything has been beyond reproach. Any office could learn from the care and comfort given by this staff to our son.

Chelation and Christmas

Somehow I fell out of the blog "habit" back in October; not only have I not been writing, but I haven't been reading either. I can blame it mostly on the kids being back in school and work being busier than ever, but I simply haven't made it a priority. I miss it greatly, and resuming this "habit" will definitely be a New Years resolution for me.

This blog started out as a way to keep track of Grant's progress with his dietary changes and his chelation. He's been a real champ through it all, I don't think the rest of us would have fared nearly as well. He's become used to the foods he can eat, and has learned that he just can't have most of his favorite foods any longer. When it started, it would take 40-60 minutes to get him to take his supplements. We tried many different methods, but there's no getting around the fact that it's very unpleasant to taste. We've had frustration with giving him medicine previously, but this was twice a day! We thought it would never get better, every night was such a battle, so draining and defeating. But now, he's always done in less than 5 minutes! We are so thankful! Over time, we've found the following have made the biggest differences:
- changing a few of the supplements, mostly the calcium
- mixing the powders w/ just enough fruit syrup to mix it up, but only so much that it takes 3-4 spoonfuls to get it down
- letting him choose his reward. Some nights, he doesn't even ask for anything, he just takes and it and goes on his way. At first, it was the Rice Dream ice cream that was the great motivator. He's burned out on that a bit and of course it's colder now as well. He's done it for a couple of "hidden" DVDs (Teletubbies and Spongebob) that he only gets to watch for rewards. And lastly, he's asked for "fire" - well not verbally, but by getting the propane lighter and handing it to me, then pointing at the fireplace. The last month or so, he has enjoyed watching the fire start, then putting the beanbag in front of the fireplace and wrapping himself in a blanket to fall asleep in front of the flames.

Next month, we have the first follow-up test from this first round of chelation. We'll find out whether the metal levels (lead and mercury in his case) have gone down, or whether they are going to take longer. Overall, there is no doubt that his eye contact has improved greatly, and his attempts at speech have greatly increased. He truly has many more words but the best part is that he is trying to speak on his own more often. He wants to make his desires known, it's so hard to watch him try to form his words, knowing that the wheels are spinning in his head trying to put them together correctly.

Grant has been so excited about Christmas this year. It was only a few short years ago that he had no interest in presents, no interest in the family gatherings to open them together. Last year was definitely an improvement, but this year when we started decorating the tree, he said "presents" completely unprompted. Unlike last year when he would just start opening presents he found under the tree (way before Christmas), he now understands when we tell him he has to wait.

Owen and Cassidy, of course, have such a deeper understanding. Cassidy has been making presents and buying presents for everybody under the sun. Owen has become Mr. Calendar Watcher and fully understands the concept of time and days now. He has been making his Christmas list for some time now and will share it with anybody who will listen.

With tomorrow being Christmas Eve, it's very unlikely I'll have another post before Christmas. We'll head over to the in-laws for homemade soup and family time and then we'll get home late, wrap the remaining presents and prepare to be woken up way too early!

Have a merry Christmas everyone!

Leaking Metal

Although the progress on the pool today was exciting, it didn't compare to the news we got about Grant today. Today was our Dr's appt. to review the results from the 1st round of chelation. The results were very, very encouraging.

The original test results back in July reported high, although not extreme, levels of mercury, very high levels of lead, and high levels of tin and aluminum in his body. The results of the first round of chelation showed that these very same elements are now leaving his body! The results exhibit these encouraging signs:

• Grant has had no adverse reactions to the chelation treatment.
• Grant's body is not "blocking" the metals from leaving his body.
• We will not need to try/research further methods of chelation (whew!)
• Any hoped-for results will be seen in the next few months.

The process now continues for the next 3 months with a twice-weekly application of DMSA (cream). Assuming there is no negative reaction, we will run a full battery of tests after the 3 months to see if metals are still leaving in large doses. From there, who knows!?

Drip, drip, drip...

It's official, no turning back now.

Last month, I started this blog with the intention of tracking our son's progress with chelation. It's been relatively uneventful as we've completely altered his diet and now have him loaded up with vitamins and minerals as well. Don't get me wrong, it's been a major struggle most days, but I think it's been less painful than we thought it would be.

Today, though, was the turning point. And it's from here on out that we find out whether this is going to help or not. After preparing his body with the diet and biomeds, he got his first IV dose of DMSA today. He did an absolutely amazing job during the procedure and I could not be more proud of him. He climbed right up on the examination table, let us wrap him up, and pretty much let the dr. insert the needle and insert the fluid.

Now, since I'm at work, my wife gets the job of trying to get him to drink 6-8 oz of water every 30 minutes and collecting the next 6 hours worth of urine. Fun!

Once we get the results of the metals (if any) in his urine, we then work out a schedule for the chelation over the next few months.

Happiness between bribery and discrete trial...

In general, ABA has not been the best treatment for Grant. I do give the therapy credit for the early days in bringing him out when he was completely lost in his own world. At that time, he did not respond to us, and the repeated trials eventually got him to pay attention and look around. However, as time went on, he did not respond well at all to discrete trials; he hated it. If anything, discrete trial became its own "aversive" to his behaviors :)

What does that have to do with today and our path towards chelation? Well, let's see... the boy who we were convinced would starve before he would eat foods outside of his tiny menu of acceptable items is now on a diet which pretty much bans all of the food he used to eat.

No dairy (cheese, milk, ice cream, the list goes on forever.
No corn.
No soy.
No oats.
As little sugar as possible.
No pears
No peanuts

And, we are now up to 5 supplements - Drainage complex, nistatin, zin, vitamin b6, and dmg... with 6 more to add over the next 10 days - enzymes, vitamin c, cod liver oil, calcium, magnesium, and alpha ketoglutaric acid. All this for a kid who would fight any kind of medicine in the past.

After a week or so of struggling to find something, anything he would eat, we are getting somewhere. He ate some steamed carrots and fried chicken. He is also taking all of his supplements. How? Why? Believe it or not, our arch-enemies the Teletubbies have something to do with this. Grant is obsessed with the tubbies; when they are on TV, he loses control. The rewinding goes out of control (not that it ever is in control), the arms and legs go wild, the squealing, everything we are trying to teach him to control goes out of control. So, we do not let him watch this show. We do however USE the tubbies in other ways - we use them to communicate with Grant, to draw with Grant, to write his letters, and on and on.

But, to eat this food and take these supplements, we've had to break down a bit and use the tubbies as a last resort; he gets to watch them if he eats the food and takes the pills. AND HE DOES! Amazing, simply amazing. Watching him eat a carrot or take a capsule is like waking up and suddenly remembering you are on vacation for a month. Elation and unbelievable, all at the same time.

thx Teletubbies! Ouch, that really hurt to say that...

Chelation... the beginning

So, after 4+ years since Grant's diagnosis, we have decided to try chelation. We had tried the gluten/casein free diet (gfcf) a few years ago w/ little success, but we had also done it blindly; we did not have any tests done before or after.

Now, we've gone through a full battery of tests - hair, blood, etc. The tests report that his mercury content is low, although lead is relatively high. He is just now beginning the supplements needed to carry him through the process. In addition, we need to begin a new diet based on the food allergy tests. FORTUNATELY, the tests show no reaction to gluten (wheat)!

So, I will try to document the entire process, along with our successes and failures.