DAN! protocol anyone?

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We're trying to follow the DAN! protocols to help our 2 1/2 y.o. with ASD. Has anyone else gone through this and found it to help? What have been your experiences with it either as the parent trying to help or the person being "treated?"

I haven't tried it but my son is high funcitoning AS.

I don't think you will find many proponents of DAN here. Most AS (high funcitoning) think it's all quack science.

Myself ... well, since I firmly believe AS is genetic, and can see the history in my own family, I don't buy the underlying theory to start with. Still, I have to acknowledge there could be conditions that mimic AS, or envrionmental influences that make the appearance of it more severe.

But the DAN protocol? I just cannot buy it.

Here is my question, and one of my large problems with DAN: how many children have been tested for metals poisoning and been found to NOT have it? They cannot ALL have it. And yet, it seems, once tested, they all "do." The odds should be against that, don't you think?

HOWEVER, some of the treatments, outside of the expense, do fall into the "cannot hurt" category, so I don't really have an objection to those. If you believe it may help, go for it.

Others treatments under DAN, however, are quite stressful to the child, and AS children have extreme diffculty coping with stress, which means the cost to those questionable treatments is quite high to your child. This is the reason you will hear such strong backlash from AS adults and teens, I believe: they cannot imagine someone subjecting them to these treatments, and are appalled that any parent would ever consider it, especially when the underlying science (which AS are really good at analyzing) is so questionable.

The VERY best thing you can do for your child is to get to know him extremely well, one on one. Know his triggers, know his senosry issues, and help keep mitigate the stresses in his environment. Our kids like routine and need sensory regulation. When you embark on a life of doctor visits, you also embark on a routine that is inherently stressful to most AS. There is a clear cost there, if you have taken the time to know your child. So be cautious, go slow, and remember that you can't trust everything you hear from someone who stands to make a lot of money off of you.

Am I selling a bleak picture? I really don't think so. My son may have burdens, but he is also amazing and wonderful and a gift to this world. By getting to know him, and helping him navigate the world in his own unique way, I have also helped make sure his gifts rise front and center. I have a child who is well respected among his peers, has friends, and is suceeding in school. Is he "normal"? No. But he would not be who he was born to be if he was.

I have a problem with an organisation that refers to ASD as a disease .

"DAN (Defeat Autism Now) is a leading research group centered at the Autism Research Institute. It is the product of a 1995 meeting in a Dallas Airport hotel room. At this meeting, called by NOHA (Nutrition for Optimal Health Association) Honorary Member Bernard Rimland of the Autism Research Institute in San Diego, experts from around the world pooled their efforts in a "brainstorming" session. Some were practicing physicians; some were medical researchers. Many were (and are) parents with a personal interest in battling this disease."

I completely understand parents who try the DAN protocol because we are societally conditioned to believe that children should learn and behave a certain way. I don't really like to get caught up in the semantics of what a disease is or isn't, I only want to do what's best.

In terms of it being "quack" science, that is debatable. Research is usually skewed by whoever is funding and then by who is implementing it, so I take that into consideration anytime I read a "study." But, I do appreciate the science behind it because it's interesting and I really just want to help. Personally, I don't think it's entirely genetic because my daughter is the first person in our family diagnosed, although it could just be no one else ever has been. But, that's neither here nor there. We definitely don't do all the treatments, only the one's that seem like they'd help--like the diet, and like the probiotics, and like the anti-fungals (since the labs came back with high yeast/bacteria values). I would not, however, subject her to anything that is overtly stressful just for the sake of treatment.

As for the heavy metals, well, our daughter came back negative. There's two rules of thought there, either she's not excreting the metals OR she doesn't have any heavy metal toxicity. But, we'll wait to do the hair test.

In regards to things being "bleak," well, I've never felt that way. I really accept her for who she is. She's really smart and pretty funny. But as a parent, I also want to make sure she is given every opportunity to be healthy and happy. So, if I take some negative feedback for her, then that's fine. Feedback is feedback. )

I have wondered if there are conditions that mimic autism, that are entirely environmental ... the school of thought amongst those in forums like this one is that such conditions are not really autism, and are misdiagnosed. It certainly is worth ruling something like that out.

It sounds like you are taking a practical approach to things. It really seems to be the metals theory that riles people. I can buy much about GI issues, etc., because food issues can affect us in so many ways. Curing those won't cure autism, of course, but they will make someone feel a heck of a lot better, and that can by itself make a surprising difference.

I have my own theories on potential environmental aggravating factors, and one of the top ones on my list is fire retardant. While I have no doubts that my son was born mostly as he is, when I read the effects of fire retardant consumption, and pictured my sweet baby chewing on his "approved" sleepwear .... well, I got angry. As if the experts could not have predicted that a baby would chew it's clothes and, thus, consume the stuff?

I also think modern life is inherently difficult for those with AS brain wiring. I've seen my son "trip" from sensory overload. Much like overexposure to certain things can trigger allergies, I believe that overexposure to certain sensory input can trigger sensory integration issues. It's pure common sense.

Mostly, though, I don't think the DAN doctors have all the answers they claim to have. Which, I guess, is the crux of it. There seems to be this wall between those who follow DAN, and those in the high functioning community that speak for themselves, and it is such a shame. Those on the high end of the spectrum can tell you what it is like, they hold the window. The other day my son was trying to explain something to me, and he said, simply, "well, I think in pictures, so ...". We had NEVER talked about that being a part of AS. He had no idea about Temple Gradin's book. He was just explaining his world.

I don't have my son on the full protocol, but he is on the GFCF diet and some supplements, and within a month of starting the diet, his language gains were just staggering. He went from having almost no receptive language to understanding everything said to him and following instructions. His expressive language also took a huge leap forward, and he's sleeping through the night consistently for the first time ever. There's more, but it would take me forever to list it all out. It makes sense for us - I have a lot of food allergies, and most of my family can't handle milk. My son clearly inherited some of these problems.

I know I'm liable to get flamed for this, but we're seeing a DAN next month just to see what he can do for DS. I grew up with terrible digestive problems and would have had a much easier time of it had someone gotten to the bottom of all my food allergies and sensitivities. My son can't tell me when his tummy hurts, so if the DAN doc can help, I'm going to let him!

I think there is a lot to be said for the theories about digestive issues. And while it's a difficult protocol, it's in the "can't hurt" category. Who can function at their best when their tummy hurts? Not all AS have these issues, but clearly many do. Note that while DAN doctors may now be applying it, it wasn't their theory. The original DAN premise was all about the mercury and the vaccines, as I understand it. What bothers me most is that they really do seem to be opportunists. Which doesn't mean some good stuff can't seep in there, but you do need to wear your "buyer beware" glasses.

I don't think you'll get flamed by parents for trying to understand all your options and what might and might not make your child function better. That is part of being a parent. We look at everything. Just, from what I've read and come to understand, I wouldn't buy everything these folks say hook, line and sinker, and I think it's important to not lose the forset for the trees when you start down the road of treatments for issues related to AS (gut issues are not AS itself, just related): your child needs a lot of "down" time, needs someone to understand and respect his sensory issues, etc. He needs you, one on one, understanding him and respecting his needs. I just worry that this very important aspect, what I know has made the biggest difference for my child, can get too easily lost in a world that makes money from therapies, appointments, and difficult protocols.

Last edited by DW_a_mom on 17 Sep 2008, 11:35 am, edited 1 time in total.

You know, I never really thought about the fire retardent. But it makes sense to me.

As for the DAN doc we see, he's an Osteopath so most of his methods are natural and non-invasive, which we like quite a bit. He'd much rather prescribe us Elderberry tincture as opposed to antibiotics. So, I appreciate the angle he's taking and because he's not an MD, he's not skewed by organizations like the APA, CDC, and the pharmacutical companies that plop pills in their laps.

Thinking in pictures is so interesting as well. Because our daughter is non-verbal, she uses PECS and she is very, very good with them. In fact, I wouldn't be surprised if she recognized words. But, even so, she is very intuitive with them and can approximate if she doesn't find the exact PEC she wants. For example, the other day she wanted an orange, but since we don't have a PEC with a picture of an orange, she brought me the color orange PEC. Luckily I know her well enough to understand what she wanted. )

Ah, that is so cute.

The whole non-verbal thing is interesting to me, when talking about a 2 year old. When I was growing up, plenty of kids were non-verbal until 3 or 4, and no one thought too much about it. I remember spending a weekend with my friend's son, who had developed his own system of gestures and seemed to communicate just fine. Around age 4 he suddenly started speaking in full sentences. This was simply accepted as the way some kids are. As long as there was evidence the mind was alive, you weren't supposed to worry. The neighbor boy didn't speak until 5, and he has since made millions in Silicon Valley.

Today my friend's son would have been subject to so many treatments by then that everyone would have believed one of them caused that sudden language ability. When, in fact, it was wired to happen that way all along.

I often wonder now if her son is HFA. But he such a fantastic, hands on family, that I don't think it would matter much to have a label. I spent holidays in college with my friend's family. Quirky, fun, loving and calm, steady. What a great and natural way for an AS child to grow up, don't you think?

I do hope your daughter is wired to speak someday. I know that not all non-verbal children are. It's a little early to tell, but it is good to know that her mind is alive and that she can communicate in her own way. Those are very positive signs.

Last edited by DW_a_mom on 17 Sep 2008, 2:26 pm, edited 2 times in total.

I have no clue what DAN is, but on the verbal issue...
My two sons were both late in talking. One picked up language very readily around 3, the other has had years of speech therapy and still mispronounces some words. He can't say the "pl" sound for one thing. He says "pr" instead. His vocabulary is excellent. My youngest daughter is verbal now but I truly think she's on the spectrum. I taught her a few signs when she was a baby. Her dad, who was her primary caretaker, would hold up a bottle, or a diaper, or something else she might want. She did a happy wriggle when he got the right one. Kids can communicate far earlier than we know, even if it's not in words.

If your daughter is communicating that is indeed a good sign. Does she have any words, even if it's not a "proper" word? My boys both had a fair vocabulary of jargon words they used.

The only word she actually has said with regularity and context is, "dad" or "dada." )

At about one year she was saying, "no" and "mama" and "baba," but those all got lost, she quit clapping and shaking her head too. Now she can say "baba" sometimes when she really gets upset and we're withholding. She's also starting to say "all done" instead of using the sign. I also have noticed that when we introduce probiotics her babbling becomes more frequent and intelligible. The diet has helped as well. I have hopes that she'll talk, but I'm kind of preparing myself mentally for her not to. Kind of the "prepare for the worst and hope for the best--but expect the unexpected" theory.

Personally I feel like this isn't necessarily a neurological disorder entirely. Given that the gut and immune system are intrinsically tied together, and after seeing how these issues affect our daughter, I'm a firm believer that ASD has several causes beyond "simple" genetics. As for the beginnings of DAN!, I believe they were out of good intentions from a scientist who happened to have a kid with ASD. (Although, I must say that I definitely believe that the immunizations we gave our daughter had a detrimental effect and contributed to her ASD) Like any good science, it progresses with research and feedback (especially feedback from parents). After reading the book by Dr. Jepson, "Changing the Course of Autism," I really felt that parental reports are starting to become more and more accepted by doctors, especially DAN! doctors. He really goes in depth into the research dating back to the 1930's, and he does it as objectively as possible.

Of course there are monetary predators out there. We were lucky to avoid one in our area as a matter of fact. It just took a bit of research, and luck, before we took a course of action. That's why we went with our Osteopath, I contacted quite a few parents who gave me feedback about the docs, and he was highly recommended both for his compassion and care, as well as the fact that he keeps his prices low and works with you to find treatments and labs that you can afford and work with.

Personally, I don't ever think she'll be exactly like a "neurotypical." I don't think her parents are even like the rest of the "neurotpicals." That's all well and good for me. I like hanging out with her and spinning her in her blanket and taking her to the park and all of those things she loves. But, I feel I wouldn't be serving my purpose as a parent and guardian if I didn't fight the fight for her. Maybe someday I'll find it all to be a bunch of hullabaloo, but I'd rather that than not try at all. ;o)