Sunday, June 21, 2009

Biomed: What It Did and Didn't Do for Us

This post is extremely hard for me to write. I wish I was writing something other than what I'll be saying but since I finally said some of these words out loud for the first time this week, I'll fess up and make it more real today.

The truth is, I can not tell if biomedical treatment is working for me. I really just can't and this is unacceptable to me because we've been at it for almost a year. I know I'm not the most observant person in the world but still I have to see some change. For those of you who don't know what biomed is, please click onto the link because I am not smart enough to explain it. What I can tell you is that I had heard such great things about it, I felt like I was witnessing the beginning stages of a new medical discovery like occupational therapy for the new diagnosis of sensory processing disorder (less than 40 years ago). To me, the theory of biomedical treatment (biomed) was completely plausible and that naysayers from the medical community stating that biomed wasn't proven bla, bla, bla were probably not doing enough.

Even though, we're taking a break from biomed, I still don't believe the medical community is doing enough. Perhaps for ADHD, there is more attention but what about autism? Many biomed specialists feel that ADHD is part of the autism spectrum disorder and for me, that's not hard to believe. I think that is why it's so easy for me to befriend a mom of a child on the spectrum. If you have a child with ADHD and don't believe me, you should read Look Me In the Eye and you'll see what I mean. With autism, you can barely get one medical discipline to claim it as their own- another unacceptable situation.

Okay, getting angry here..... not productive... will stop.

Back to biomed: I tried really hard to stick to the rules. After trying a "Special Needs" Nutritionist for a couple of months, I decided to go for the gold standard and hire a DAN! doctor. He was expensive, was an actual MD, and a pediatrician too! If he can't fix this then no one can, right? I remember telling my developmental pediatrician about our move. She had already been Logan's doctor for a whole year and I was at the brink of begging her to drug my 4-year-old before the promise of biomed blew the breath of hope back into me. She wished me luck and always left the door open for us to come back.

We went back through that door this past week. We were talking about Logan's current medications and vitamins and she said the DAN! doctor should do the prescribing of medication for Logan (ADHD medication) since he was giving him other medicines as well. However, in the softest of voices, I quietly told her that I wanted her to do the prescribing of medication from now on. It was at that moment, I let myself face why I was really in her office that day. I was saying goodbye to biomed for Logan, at least temporarily.

You would think that my husband and I would have talked this over and decided together about such a change but we barely did. Both of us had invested so much in this protocol (diet, days off from work to go to the doctor, lab tests (lots of blood), very involved allergy testing that takes hours and multiple visits, enormous bills from the DAN! doctor, vitamins and supplements, and biggest expense of all, grocery shopping and time... time is money too). Kai and I never had the courage to even talk to each other and firmly acknowledge that biomed had not shown us much improvement but at the doctor's office, I couldn't let our reluctance to face reality get in the way of finding a better path for Logan.

For the record, our DAN! doctor is accomplished and well-known, I think perhaps even nationally within DAN! circles. From our very first meeting, even before taking any blood, he challenged us to give up everything, not just casein and gluten but also soy, corn, peanut, eggs, citrus, chocolate, peas, alcohol, and caffeine, food dye and preservatives. It was difficult but we actually managed to carry out this diet for a long time but still we saw no significant changes.

Additionally, our doctor gave us other things including the B12 shots (there's a lot more but I won't go down that lane). We saw no changes with that either. But we kept going, hoping that time would help the healing but we had to ask, how long is long enough?

I think our visit to the city the other day sort of said it all. A year ago right before we started the diet, I took Logan to a traditional allergist and spent the day similarly to the day I previously wrote about when Logan was uncontrollable. The only difference between that day last year and the one this past week was that he was one year older.

I also want to say that my DAN! doctor knows I'm taking a break from things. We aren't dropping everything and I'm still keeping him in our life, possibly just for allergies.... I don't know. We will also still steer clear from gluten and some other foods because tests and some GI reactions indicate problems in this area. We'll still keep him on those VERY expensive vitamin supplements and B12 shots but it won't go beyond that for now. If we see him worsen, that will be the sign saying that things were working and we just didn't know it!

By the way, since stimulant medications still scare me to infinity, I will never rest for the search to help Logan with alternative methods if I have some evidence that it has helped others. I'm going to try cranial osteopathy soon. I actually found someone that takes my insurance! Others call it cranial sacral therapy but the osteopaths say that they've had more training and the sacral therapists have not. I have a friend who is a professor of osteopathic medicine who assures me that it can not harm my son which was my greatest concern. I am not exactly sure how it works but I'm going to try it and see.

Believe it or not, even though I have apparently suffered major defeat with DAN!, I worked up enough nerve to tell my developmental pediatrician that I was going to try another alternative method. I can only guess what she was thinking but I will never know because she was very gracious and even told me not to try any ADHD medication while I was trying out this new treatment. I like doctors like this, don't you? She might have her own thoughts but maybe she's letting me find my own path while possibly silently acknowledging that she doesn't know everything either. The osteopath was humble too. Not once did he say he could change Logan.

On a final note, for my GFCF sisters (especially the master chefs of the GFCFrecipes Yahoogroup) out there, I want to say thank you for your guidance and support. I will still continue to seek your advice because the diet is important to us. More importantly, I want to tell you that I only wish I had the same good experiences that you are having and that I support you fully in what you are doing for your children. No matter what happens with this break that I'm taking, I will never regret trying out this tremendously difficult task. My kids eat so much healthier than they ever did and I'm proud of myself for baking the boys' bread and cupcakes. I also want to say that in defense of the GFCF (and other things F) diet, I maybe a bit blind about it because Spencer has been making a lot of progress. I attribute a lot of this to ABA therapy because as soon as he started ABA therapy, I saw a lot of changes, especially in speech but we can not say for sure that his diet and supplements didn't have anything to do with it. We'll never fully know how much it helped until we are fully able to let it all go. I don't have the audacity to do that so that is why we are not dropping everything but I am ready to take a partial break and try something new. I'll let you know how it goes.

Pictured: Mother's Day 2008. Our last gluten cake as a family was a mocha cake from a local Filipino bakery. Filipino cakes are amazing.


John Robison said...

If I were you, I would proceed very cautiously with approaches like those.

While they may be effective for some kids, things like chelation can be dangerous and should not be undertaken without proper testing and knowledge.

The difficult truth is, most kids grow and change at such a rate that it's impossible to attribute changes to any specific process.

I'd offer you this thought: Most kids in my parent's generation grew up fine. Those kids had all the ADHD and other issues moms like you face today, but since no one knew what they were, they grew up like any other child.

And you know what? Most ended up fine.

Unless yo have reason to believe your kid is suffering from brain damage, or some unique modern phenomena, that example of the past is worth keeping in mind.

Sue L. said...

This post was very brave. I truly appreciate your honesty and your ability to focus on your primary goal: helping your children.

A clinical psychologist who stumbled upon your blog said...

I want to concurr with what the above poster, this is indeed a very honest post. You approached these interventions with an open mind, and now you are trying to evaluate them honestly. Don't second guess yourself and assume that your failure to notice results is due to any deficiency of your own, such as inattentiveness. Researchers have done scientific studies on those procedures and also failed to find any empirical support. It looks like there is a reason for this.

When you have time, please look at this post. It is a review of a book on biomedical treatment for autism as well as an account of the poster's own experiences with autism in her family.

Liz Ditz said...

Here's a similar post from a California woman, Not a Huge Fan: Autism and Biomedical Interventions and here's her Letter to Any Parent Who Thinks Their Child May Have Autism

Karen Griffith Gryga said...

I really appreciate the information and the honesty within this post.

I am with you -- I will keep an open mind towards any approach that potentially helps my child -- with a framework and a realistic assessment.

Thank you for sharing.


Kim said...

As a parent who has had success with biomed I too appreciate your honest assessment that it may not have worked for your family. That is the reality of ANY treatment for ANY disorder or illness -- chemo unfortunately does not help all cancer patients, ADHD drugs don't help all ADHD kids, ABA does not help all ASD kids... and biomed is no different. I think parents need to assess biomedical treatments as they assess any treatment they would consider for their children and, like anything, else, hope it helps but understand it may not.

However, I also have to take issue with "A psychologist who stumbled upon..." and the link she posted -- that link contains a great deal of misinformation (and clearly prejudicial views) about biomedical treatments, not the least of which is that biomed treatments are not scientifically based. There a number of books available that provide extensive citations to peer reviewed literature demonstrating the scientific bases for these treatments. It is simply false that they are not scientifically based but an easy statement to make (and for those who do take the time to look beyond these pat arguments, easy to accept). I assume the "death" referred to in that link was the unfortunate death of a child who was given the wrong medication (not a medication used to treat children on the spectrum biomedically) by a doctor inexperienced in treating ASD children. There are many many well trained doctors and other medical professionals who are well-versed in treating ASD kids and parents should carefully choose a biomed practitioner if they choose to go that route as they would carefully choose any doctor they see.

Many children who did not receive relief from so-called conventional medicine (or many who frankly have been refused treatment for conditions such as serious GI problems simply because "that's the way autistic kids are" -- which parents still are told all the time) have had success with biomedical treatments. Again, it does not work for all but that does not mean it won't work for some.

I know you will continue to explore all avenues of treatment for your boys and I applaud your efforts!!!

Unknown said...

We did biomed for a year. I didn't notice too many results. Then, we moved on to a more extensive biomed program. Dr. Amy Yasko's protocol has done wonders. It's more detailed and expensive, though. My main problem was that my son was physically ill. Most autistic children are, as well. I'm treating his physical symptoms, to heck with the behaviors. Good luck in your journey...hang in there! It can be a rough ride. :)

Anonymous said...

My child has SPD and biomed has helped...with constipation, behavior, dark circles around eyes, etc. It hasn't "cured," but it helped. So have some other things, like OT. Craniosacral helps, but he doesn't like it right now, and we're respecting that.ABA, on the other hand, never helped, and usually made things worse. Everybody's different. You'd think more biomed folks would be respectful of that, given their own journeys with their children.Best of luck...

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