Friday, April 30, 2010

Yes, I did it...

.....I took Alex to a DAN! doctor (holds arms over head and ducks).

What is a DAN! doctor? Basically, a doctor who believes autism has a biological cause and can be treated biomedically - with special diets (usually the GF/CF diet), supplements, detoxification, and sometimes even chelation. This is the protocol endorsed by Jenny McCarthy. More info can be found here.

However, I didn't just go to "any" DAN! doctor. (And there are many questionable ones out there; some aren't even real doctors - they are nutritionists, chiropractors, etc.) I went to a developmental pediatrician who went to a real medical school (and a good one at that). She is familiar with autism from her background apart from the DAN! protocol. I had to wait 9 months for the appointment. I was impressed with her answers to my questions and by the questions she asked ME. I am a nurse and told her point blank I was skeptical of the "whole DAN! thing". She said she appreciated that and told me she had once been skeptical of it too and that there are some parts she is still skeptical about. She told me to "have an open mind mind but not so open your brain falls out." Perfect way to put it as far as I am concerened!

I have generally followed sites like this and this because the fact that autism can be treated or even reversed using special diets and supplements is just crazy, right?? I did decide to try the GF/CF diet with Alex last year and honestly didn't see much difference after 9 months. He seemed less out of it but the changes were not worth all the effort this diet requires. So I took him off it and he immediately started drinking tons of milk, specifically Carnation Instant Breakfast. My son turned into a zombie, I am not kidding. I couldn't get his attention, couldn't "reach" him unless I was yelling or tapping him. I took him off just casein (dairy) and he has been more alert ever since. And funny thing...his frequent diarrhea stopped. So we have been casein-free for about a year now. Did it "cure" him? No, but he is more alert and less apt to be in the bathroom with diarrhea and those are GOOD things even if it was achieved in a "wacky" way. I will take it! So, I thought, what if there IS something to this DAN! bullshit?? What if I went to a REAL doctor, a doctor who specializes in pediatrics who just so happens to practice this protocol? What could it hurt other than my wallet? (And God knows we have spent plenty on more conventional therapies like speech, OT, and RDI). I decided to make an appointment figuring I could always cancel it (and sort of assuming I would). Then I read this post by Goodfountain, a blog I have followed for some time. I admire her positive, yet realistic (and often funny) way of describing living with a child on the spectrum and her daughter seems a lot like Alex. Her point that there can be a "Middle Ground" hit home with me immediately. Because that's where I am. I will never consider chelating (in my opinion, that's some crazy shit) and my kids are fully vaccinated although I do forgo any vaccine with Thimerisol and most "optional" vaccines. However, I am willing to keep an open mind with some of this "stuff". Why not? It just may help. And it's not like ANYONE has all the answers, quite the opposite. It is becoming more and more apparent, in fact, that autism, like cancer, may manifest due to many factors. Who's to say nutritional deficiencies and/or difficulties with detoxification have no part in it? Kind of like 2 people who smoke for 30 years - one gets lung cancer at age 40 and one lives to be 90. Every BODY is different.

She did examine Alex in pretty much the same way all the other doctors have examined him but asked me additional questions about diet, rashes, GI symptoms, etc. We talked a while about Alex's propensity to lick metal things like bleachers, railings, etc and the fact that he has swallowed 3 coins. When I went back for the follow-up appointment, she told me she doesn't think Alex has autism or is even on the spectrum. She said she sees him sitting right at the edge of it (could I have picked a better title for my blog!!???) However, if he were to fall off the "fence", she feels he would fall off on the non-autistic side (meaning he does not have HFA, Asperger's or PDD-NOS).

She sees autistic-like symptoms but said he has too many strengths that kids on the spectrum simply do not have. Some examples were appropriate eye contact (although his is diminished, it was very socially appropriate), joint attention ("hey look at this!" said WITH eye contact), ability to transition with no difficulty, good pretend play skills (although generally diminished, he did play really well in her office and showed he is CAPABLE of good pretend play), took part in back and forth communication, displayed a sense of humor - basically she was thrilled to see he made appropriate 6-year-old boy jokes about "poop". She did see a lot of problems with language but felt the problems were not typical of autism, but rather another problem like an expressive language disorder. She saw a lot of sensory seeking and movement, decreased attention, etc.

Other doctors have told me this. The difference is they all diagnosed him with ADHD, which never seemed to fit. And I know many kids on the spectrum are first diagnosed with ADHD. This doctor said she doesn't think it is ADHD (I certainly don't). She thinks he has "significant" sensory processing disorder (sensory seeking), visual processing problems and an expressive/receptive language disorder. She admitted she has never seen a child with his language pattern/difficulty before. If you met Alex, you would notice immediately that his language is just "wrong". You are often left wondering "WHAT??!!" She told me his odd body movements are not true stimming, but are instead sensory seeking movement. I'm not sure of the difference, but whatever. She also noted his nasal stuffiness, dark circles under his eyes, and watery eyes, which quite frankly, he pretty much always has, not just during allergy season. I'm so used to it, I barely notice it anymore. Now I am wondering how I could be so blind! blood drawn this AM and need to send in some urine. From there, we decide on "treatment". I will never consider chelation, will always vaccinate, will not load him up with a million pills and supplements, but WILL keep an open mind and try what she suggests. I am a "middle-ground" mom.


  1. Ok, let me preface by saying I'm waaayy out of my league here commenting. But, I'm interested, and concerned.

    This post made me think of a Phil Donahue show I say a zillion years ago about allergies and how this boy who had outbursts of anger or something (it was a long time ago) ended up being allergic to oranges. Fact? Fiction? I dunno, but, I do think about foods causing the body and/or mind issues. In fact, I need to look it up again but I for sure saw something about lactose intolerance and depression. Something with enzymes etc.

    I think this diagnosis must be promising for you and your boy? Also, I looked up chelation and it sounds..scary : |

    Hey Kris, when you have a chance, would you mind telling me your take on this post and comment reaction?

    I like much of what the blogger/poster has to say about attachment therapy and parenting in general and the people that comment on her blog are always highly critical. This particular post is about autism and blame. I see she's removed the comments that don't address the post but rather her criticism of attachment therapy, but she's (so far) left the others.

  2. How I wish I could find a doctor with a a mind like this....

  3. Campbell, I looked at the blog and the comments. I have only read this one post by her so I don't know what she usually writes about. Her point (I think) is that we should stop trying to "blame" someone for autism and the commenters are saying there is indeed someone to blame - namely vaccines, the medical "establishment" etc. That autism is caused (in part) by exposure to toxic substances in the atmosphere, in food, from medications (like antibiotics which can cause yeast overgrowth) and vaccines. Many people feel psychologists have no business dealing with autism because they feel it is a MEDICAL problem, not within the expertise of a psychologist. The diagnosis of autism is made from a symptom checklist with no regard as to the CAUSES of these symptoms and this is a problem for many people. That's why autism is often misdiagnosed - other causes can cause the same symptoms.

    The doctor we saw feels that since we all have different vulnerabilities (like for heart disease, cancer, diabetes,etc) that it is entirely possible autism is simply a vulnerability. That some children are not able to detoxify themselves as well as others or are more susceptible to the proteins in milk and gluten, etc and the result is autism. Psychologists tend to look at autism as something one is born with and if you have a certain pattern of symptoms, you have autism.

    Since no on is sure what causes autism , I take the stance that we should be considering all possible causes within reason.

    There is also the controversy of whether autism is actually increasing or not. The psychologist says it isn't - that these kids were merely given a different label 30 years ago. The commenters are saying it IS increasing due to so many more vaccines, environmental pollutants, etc. I again take a middle ground opinion. I think there are many kids labeled autistic today (mostly higher functioning kids) who NEVER would have been called autistic 30 years ago. I also think many kids who were actually autistic were labled mentally retarded 30 years ago. (So there actually were a lot of autistic kids 30 years ago but they weren't labeled as such.)However, I do think the numbers are increasing. It is astonishing to me how many people I know IRL who have kids on the spectrum or with other autistic-like disorders. Why, I don't know and neither does anyone else, despite what they say.

    Yes, the doctor did say Alex's outcome is promising. She thinks he will be OK in the long run but we do need to continue OT and speech therapy and that he will continue to need special ed support in the classroom for the forseeable future. All in all, I feel good about it.

    Thanks for your interest! Most people who do not have a child on the spectrum are not at all interested.

  4. wish I could find a doctor with a head like that

  5. Thank you so much for taking the time to write this reply Kris. I appreciate it.

  6. I am glad to read this post. "Notes from the edge of the spectrum" is a great title for your blog! Our eldest son has "atypical neurologiocal development" that is similar to high functioning Autism (PDD-NOS, Apserger's and mild intellectual disability), but also different and so much more than that. Pay attention to the other symptoms that just don't fit and are all too easily dismissed. You are making a difference and blazing a trail for Alex.

  7. We are doing EXACTLY what you are
    Sensible DAN

  8. So great to see you have a blog! I can't wait to do some back reading.

    As you know, I'm so with you on that middle ground. I'll try some basic stuff, but I won't load my kid up on a bunch of supplements and I'd never consider chelation.

    I wish I could have found a better DAN doctor. The main concern I have for my kid is her infrequent BMs, and so far I've gotten no decent help from regular pediatrician, the DAN we saw, and the Naturopath we saw. You are very lucky to have found your own middle ground doctor.

  9. Oh, I love Good Fountain, too! I've been reading her for years. The Tongginator does not have autism, but she does have sensory issues. She's more mainstreamed now, but wasn't always quite at the place she is now.

    Anyways, I stopped by to tell you that I am so glad to know we weren't the only clueless adoptive parents! It feels good to have company.