big bites

I've been really quiet here, and I don't really have one good reason for it. We started a new biomed program for Grant about 6 weeks ago, given that's how this blog started, you'd think I'd be sharing the experience. Grant has been doing fantastically well on his bike, given how much I've written about that, you'd think I'd be sharing the experience. Grant has been talking more, and has been communicating well at school with his Alphasmart, again you'd think I'd be sharing the experience. Why? I suppose it's just been a private time for some reason. I sit down to write and nothing comes out. I've also been a bit autismed-out; I haven't been keeping up on the news and I haven't been keeping up with peoples lives via their blogs.

But tonight, Grant ate all of his meat. HA - that is such a funny sentence to write. Seriously though, my hands were clapping in the air at the dinner table and we were cheering. When we started on this diet almost 2 years ago, we knew it would be tough but we were genuinely concerned about what he would eat. We were one of those "he'll never eat that" parents. But he has, and tonight, he did.

Early on, it was tiny, tiny pieces of chicken. He would gag. He would fight. He would cry. But, he didn't get any of the stuff he actually wanted (fruit, bread, etc) until he took some bites. Even with the tiniest of bites, he would gag. He just had no experience with that texture and he was really upset about having to eat it. Time, though, is an amazing ally. Night after night, he had to take bites. Gradually, he tried new types of meat and stopped gagging. Bigger and bigger bites, less and less struggle. Tonight, we had BBQ'd turkey burgers and he ate 1/2 of a burger - every single piece that was on his plate! Big bites, no problems.

I should mention that Grant doesn't have any motor issues with regards to food. It's purely a taste, texture, smell, sensation, experience - like it is for all of us, just more so.

It can be done. Don't give up if it seems impossible. Tiny bites with no options. Every time, be consistent and don't give in. You'll all be better off for it.

Patience

Grant, there is long-term patience and short-term patience, and tonight evidently I have neither.

I am so sorry that I lost my patience with you tonight. I know it's tough for you to fall asleep on your own and you do best when you've got a warm body next to you. Tonight, my patience gave out after you had gotten up several times and then couldn't keep the light off. I jumped up and let you know how frustrated I was. I went downstairs to let off steam so I'm not sure when you fell asleep. Hopefully it was soon, but I'm sorry. Your daddy tries to understand where you are coming from but as you know, many times I fail and tonight was one of those times.

As for long-term, one of the most frustrating things about your diet and supplements is the length of time it takes to see what works and what doesn't. To truly see what an addition or subtraction does, it can take days, weeks, or months. You don't really know this, but we had some more tests done to help determine the best supplements for your body. While we were waiting for the results, we let some of the old supplements run out since they cost some money and we didn't want to spend that money if it wasn't necessary. But, as we did that, we noticed some changes in you - you weren't responding as much to us and the "fog" seemed to be thickening again. We bought all the supplements and got back to the every night routine and it has really made a positive difference - the supplements clearly make a difference in your life.

Now, as you are very aware, we've let you eat pizza again. It has been so fun to watch you eat it! We are testing a few of the foods that have been restricted from you for over a year now, and the first is dairy. You seem to be doing well, but one of the issues has been your trouble getting to sleep. It seems like we've gone back to the way it was a few years ago when you HAD to have someone next to you to fall asleep. Is it the dairy? Or, is it because we were out Friday and Saturday night and you didn't get your supplements? Or is it totally unrelated? I can only imagine how frustrating it must be for you to feel changes in your body and not be able to tell us about them. I wish we could just change everything in a week and be done with it, but unfortunately it just takes a lot of time to see what things are affecting you. Tonight, I don't have the patience to plan that out, to wait for the results.

I'm sorry that I'm having such a hard time being patient, Grant, but I sure am glad you are patient with me!

Psssssssssssst!

Don't tell anyone - this is just between you me.

We gave Grant cheese pizza last night. And he ate it.

You see, this is a big deal at our house. It's been well over a year that Grant has been on the eat-nothing-you-could-possibly-find-in-a-store-or-that-is-simple-to-make diet. Since the first few months, he's been positively fantastic about it, better than we could ever hope or expect him to be.

Previous to the diet, he didn't even eat pizza. He wasn't interested in it in the least. But, in the past few months he has wanted pizza when we had it at home. Even more recently, he's been saying "pizza" when we pass by pizza places. He even throws in a "yum yum" for good measure.

But last night we were all on the way home from Cassidy's basketball game when we passed by 2 pizza places and heard the familiar words from the back seat. We had just had that "it's too late to cook anything but what can we pick up that's somewhat healthy, not to mention, what will Grant eat" conversation. And then, in a knowing glance that only 16 years of marriage can make, we looked at each other as if to say "it's time". We're essentially done with standard chelation as it has stopped being effective at pulling out metals. He's still taking various supplements and we've stuck to the diet based on the allergy test results. After a year though, it's time for the double-blind study, the test and response.

And so, we stopped at the 3rd pizza place, our favorite - Sal's Pizza. Grant's response might as well have been that of Christmas morning, he jumped out of the car and ran to the door. Somehow he knew he wasn't going to be denied this time. He looked like one of those cartoons where the boy starts smelling something incredible and it lifts him off the ground and toward the prize. Once home, we were just as excited to see what he would do as he was to actually get to pull the pizza slice out of the box and put it on his plate.

He picked it up and bit in, savoring the bite like we savor the chocolate at La Fondue, eating with a slow passion like the first kiss after a long time apart. Grant continued to eat purposefully until it was all gone, including the crust. Our amazement in watching quickly broke, however, when Owen started to cry. "He can't eat that. It's going to hurt him!" Tears flowed as Grant's younger brother pleaded, "No, Grant, stop eating that!" We did our best to explain to Owen that it was OK and Grant was not going to be sick (we hoped). He took little solace and then turned his eyes up to us and said "I want Grant to talk like us." If ever a 5 year old showed love for his 8 year old brother this was it; we were witness to it and it was truly a memorable moment.

So now we wait and look for signs, changes, behaviors. We won't tell anyone, except you, so that we can get honest and unprovoked reports of positive or negative changes from his teachers and therapists. If there is nothing negative, we'll continue to introduce other items from the banned list, slowly and carefully. Out there, somewhere on the horizon, a boy finds popcorn, ice cream, and birthday cake and he smiles.

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.

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.

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...