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Where to begin? Know your Treatment Protocols...

Posted Nov 21 2008 4:46pm
When I first started researching autism I had to search the web like a mad woman. I found a lot of information but it was scattered all over the place. I had bookmarks galore and I also relied heavily on many of the listserves. I remember thinking how nice it would be to have all that information in one spot so I didn't feel like I was just blindly searching for something when I didn't even know what to search. I'm hoping this will make someone else's search a little easier.

Not all protocols work for every child. And then there's the understanding that within most protocols are "mini protocols" that could possibly do wonders even thought the overall protocol wouldn't. Finding the right protocol can be time consuming and costly so my suggestion is to not waste 5 years on a protocol that isn't working. Give yourself 6 months to a year on a protocol and then reevaluate. Are you seeing any results worth continuing? Is there something you could be doing that you think would be helpful and aren't? Are there labs pointing you to a direction you haven't gone yet? Constantly reevaluate what you are doing to get the most out of any given protocol and give it a sincere chance. If it's not working, move on down the line to another protocol.

Also keep in mind that sometimes you don't get results from one thing until you do another. I've had many parents tell me that "x didn't work and we gave up on it but then we did y and then revisited x and suddenly it was working." Some things just need a foundation before you can build.

Protocols can be expensive. Many of the doctors don't take insurance and many of the labs aren't covered by insurance. But there is a glimmer of hope. Some do take some insurance but you'll have to search them out. For the rest, you'll find that a lot of parents are one their own trying to do the best they can without help. Medical reform is needed but that's another blog topic. Here are some different treatment protocols below.

DAN! (Defeat Autism Now!)
The most popular and well known protocol is the DAN! protocol. This is the protocol that the recommends much of what you hear about such as the GFCF (Gluten Free Casein Free) diet, MB12, HBOT, chelation and more. It was created by the Autism Research Institute, a non-profit that has been around for 40+ years conducting research. You can read more about ARI and DAN! here.

They focus heavily on metabolic issues, gut and metals but they are starting to grow and implement more on the immune side but it's a slow transition. Not all DAN!s are created equal so ask around for recommendations.

Yes, this can get pricey but if you go slow, you will discover ways to make it more affordable. I'll post a blog on that sometime in the future.

To find a DAN practitioner click here.

NIDS
NIDS (Neuro-Immune Dysfunction Syndrome) is almost entirely immune related. You can find more info here and here. This is the protocol my son had been on for almost 2 years and we've had great success although not full recovery. The basic protocol is antiviral, antifungal, SSRIs and the NIDS diet. There are only 3 places to see a NIDS practitioner. Dr. Michael Goldberg in Tarzana, CA, the Northern New York Autism Center in NY and they also have an office in TX. To my knowledge, if you go to NNYAC in either location you'll be seeing Dr. Russell. There is a NIDS listserve that can be very helpful if you are considering this protocol. Dr. Goldberg does take some insurance and I'm not sure about NNYAC.

Yasko
Dr. Amy Yasko bases her protocol on the expression of certain metabolic genes. It's actually quite hard to understand on your own because if you are anything like me, you feel like you need a doctorate in biogenetics and biochemistry to understand what she is saying! Parents manage to push forward with it, though. It's quite expensive but enough people have tremendous success with it and figure it out via her listserve to which she and other parents communicate and help. I've heard most people have to read her books about 2 or 3 times before they even start but many are thrilled with the results. Dr. Yasko does not see patients anymore so most parents are on their own unless they want to see (or have phone consults with) the few doctors that implement the protocol. Dr. Nancy Mullan in Burbank, CA is one that no longer uses the DAN! protocol and is fully Yasko and Dr. Rachel West in Santa Monica still implements DAN! but now also uses Yasko. A few other Dr.'s use some parts of her protocol. While most DAN!s are familiar with her protocol, most don't use it so there are only a few doctors that actually implement her full protocol.

You can learn more here and her listserve can be found here. The store can be found here.

Pfeiffer Treatment Center
The PTC is similar to DAN! but they tend to focus more on the copper/zinc ratio. Not a whole lot to say here as much of it is covered under DAN! but do understand it is their own protocol, not a DAN! protocol. Very similar, though.

Homeopathy
I must admit, I don't know much about homeopathy. It would be a sad explanation to hear it from me! When parents start talking about homeopathic remedies it all goes right over my head as I haven't even attempted to learn since we just aren't using it but suffice it to say that many find success here. I know that they work under the premise that "like cures like" although it's probably too simple of an explanation. I would caution that if you choose this route, make sure you use someone very familiar with autism. Get recommendations. Here is a link to a reputable place but I'm sure there are others. Google it for more info or a place near you.


Aside from the above protocols, there are many other types of protocols that are little more specialized. Yes, some of them could fall under other protocols as more of a "sub protocol" but they are good to know so I'm adding them.

PANDAS(Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections)
PANDAS, in it's simplest terms, is the overproduction of Strep antibodies. It's based on the work of Susan Swedo and is starting to gain mainstream acceptance although it's not quite there yet. I don't have a PANDAS kid but I know of many so it's always good to at least run the titers to check. More info on it can be found here and here.

Lyme Induced Autism
Some cases of autism are aggravated or even caused by Lyme.
I don't have a Lyme kid so I don't know much about it butyou can find more info on LIA through the LIA Foundation.

NAET and BioSet
NAET (Nambudripad's Allergy Elimination Techniques) and it's offshoot, BioSet, are becoming more and more used within the autism community. No personal experience but I hear a lot of good things.

Gastrointestinal Doctors
There are two doctors in the US that are acutely aware of autism and it's GI issues. Dr. Arthur Krigsman at Thoughtful House and Dr. Buie at MassGen.

Stan Kurtz's Anti-infection & MB12 Spray
This would generally fall under the DAN! protocol but Stan asked me once to put it on my "Introduction to Autism" file that I sent to people so I'm adding it here, too. You can read about it here, here, and here. Stan is also on the Board of Directors for Generation Rescue as the Executive Director.

I want to make sure that I take the time to say that just because a protocol isn't mentioned on here, it doesn't mean it doesn't have value. It simply means that I either overlooked it, forgot about it or just plain don't know about it and no one has ever brought it to my attention. Keep researching, keep learning and don't give up. If a protocol doesn't work for you, try another. And there will always be a section of people that do nothing at all and their children are fine. There's no guarantee that any of the protocols will work and there's no guarantee that if you do nothing your child will be okay. Do what you are comfortable with and do it as best you can. That's all anyone can ask of you as a parent. Don't give up on your children no matter what your choice because they aren't dumb, mentally retarded or unaware. They are people and they do have feelings, emotions, and intellect whether they are able to express them in a way that you understand or not.
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