Wednesday, June 8, 2011

Biomedical Trepidation

Most of you know that I am a biomedical skeptic.  Alanna is on a gluten-free diet but beyond that, we do not do much in the way of biomedical treatment.

All of that may change next week.  After our failure with clonidine my wife and I decided it is time to give in and go see a DAN doctor.  We feel that we have nothing to lose and possibly something to gain.  After all, the gluten free diet did help with gastrointestinal problems, so perhaps Alanna is sensitive to diet.

I am hopeful because there is some research out there proving some of these therapies can be helpful, but also nervous because of the potential for harm.  However, we have ABA therapy and speech therapy well established now, so any additional huge leaps in progress we would have to attribute to biomedical intervention.

In general I would describe Alanna as generally happy, but sleep deprived and on many days, just "unwell".  She is often lethargic and spacey and I don't know why.  Sometimes she cries for no discernable reason.  I have to wonder if she just feels ill... sort of like I feel when I don't exercise and eat crap for three days straight.

Maybe it will help, maybe it won't.  But before we pump her full of more drugs, we feel we ought to at least investigate it.


  1. Have fun :D We are still where you are right now. Sometimes I wish I was one of those people who just cultishly believe in it all, then maybe I would be doing a lot more treatments.

    But beyond GFCF and other healthy changes (like organic, whole, nothing processed etc) and a few supplements we haven't done much in the way of biomed.

    I would love to keep reading about your experience, you being another skeptic you know, like me :D Not easily sold and all that.

  2. Praying for you all - thanks for sharing so candidly.

  3. For those of us a wee bit unschooled, what is a DAN doctor? Also, can you explain briefly what is meant by the whole biomed theory?
    Love you all lots, and pray for you often. :)

  4. We have spent more time and money on research than most sane people would consider in the pursuit of helping our son (now 7, semi verbal, semi social, physically healthy, generally happy and receptive skills close to peer equivalent).

    We tried dietary changes but since we had him tested by a developmental paediatrician for near everything know to humanity we did not expect any results (no allergies, intolerances, or GI issues) – and low and behold absolutely nothing changed after six months GFCF with more than religious zeal.

    The tests the developmental paediatrician did are the exact same a DAN (Defeat Autism Now) doctor does – the only difference is that the tests were free. We have a supportive family doctor and gladly referred us for any test we every asked for.

    A friend of ours supports DAN but when I look at the some of supplement labels I oddly found that a Flintstones chewable vitamin was better (the contents are a statutory disclosure). Given that our son has no health issues or intolerances the benefit of the suggested supplements would be nil since his diet is very healthy.

    DAN may help some (only anecdotal evidence to date) to “induce” nutrient input for alleviation or mediation of symptoms but I find it extremely hard to see how it can “cure”. I mean really – if it were so great why would not every government support it, it is certainly cheaper (but far from free I agree) than delivering ABA/IBI and would eliminate wait lists globally in a fraction of the cost. Some of the DAN dosages border on toxic and I cannot see how this really can be helpful (at least for our son).

    We have had an ABA/IBI program in place for near five years (three of which were self funded) and this has with most certainty given him his greatest gain in speech (can ask and answer but not “conversational”, he will get there), independence (dress, toilet, eat, get drinks, ride bike, etc), and quality of life (he can communicate and enjoys people). In the beginning this was not even conceptual but he surprises us every day. This is hard work for everyone, especially or son, and though his acquisition rate is getting better slow and steady works for him.

  5. @Anon - thanks for the information. We too believe IBI is the primary intervention, and in our case going GF actually made a difference. I think some kids are sensitive to diet changes and some aren't but until you try you don't know. We will go and listen and this is covered by insurance and see what advice is offered. We'll research and see what is safe and what isn't. Unfortunately we have never had access to a developmental pediatrician due to excessive wait times.

    Frankly I wish diet didn't make a difference because it's a pain in the butt being gluten free.

  6. @Natalie - a DAN doctor (Defeat Autism Now) is a naturopath that specializes in autism. They work on diet changes.

    She is generally unwell and is sleeping terribly, and nothing we're doing seems to work. As Tim's original post said, we've got IBI and speech well established. We've tried clonidine for sleep only to find it made things worse. We need to see if this works for us. A developmental pediatrician is a 1 year wait, so that's not happening. This is covered by insurance so we're going to go for it and see.

  7. Hi! I stumbled upon your blog as I was surfing the web. My heart goes out to you and I hope that with all that you are doing that your daughter continues to make gains. I felt as if I were sitting across the table from you as I read your words of love, frustration, hope, and challenges.

    My daughter starting showing symptoms that I believe are strongly associated with autism when she was a year old and after being totally frustrated and not willing to listen to the typical advice you get from most parents and her doctor, I took her health into my own hands to find answers. She was on some meds for a while that totally changed her personality and I ended up weaning her off of most of them to where she only takes meds as needed now. I focused primarily on making dietary changes and though she is not 100% GFCF, she no longer mumbles or uses short phrases or gets overwhelming frustrated. To help with her communication, I encouraged her to play with my computer and laptop to learn her ABC's, 123's, pictures, songs, etc. Her vocabulary is so much better and clearer now. She is still extremely sensitive to sound and I am looking into sound therapy for her. I am thankful that I became her biggest advocate rather than waiting. Keep on doing what you're doing. Your love is the biggest and greatest gift to your daughter and even though she may not be able to tell you she loves you, she does. If you want some info on the plan I use for her diet, let me know and I'll send you a link. And if you haven't watched Food, Inc, be sure to check it out. You'll be amazed at how the foods and chemicals we are feeding out kids are really affecting their development.