question about a DAN doctor | Autism PDD
I have a friend who has a child who has autism, and who also happens to be a physician. She has been following the DAN protocol with her son, including chelation, with limited results. Anyway, she went to a one day DAN workshop for practitioners about a year ago, and said that at the end of the day they had a list that those who had attended the workshop could sign if they wanted to be added to the DAN practioner list on ARI. So, just because someone says they are a DAN doctor, and just because their name is on the DAN practioner list, it does not mean that they have a vast amount of knowledge about autism and treatment, alternative or otherwise. The only thing being on the DAN practioner list means is that person has gone to a workshop for one day (although sometimes the workshops are for more than 1 day) and signed their name on a piece of paper. It does not mean that they are competent practioners in any way.
I have had personal experience with a DAN doctor who did seem to be more interested in making a profit than I thought he should be. Also, this same doc promised cures and significant improvements. For instance, he told me my non-verbal son would start talking, which despite trying the GFCF diet, yeast treatment, digestive enzymes, and many other different supplements, he did not start talking, and is still severely autistic. So yes, if anyone promises a cure, run very fast in the opposite direction.
I would definitely do your homework before going to see one or these docs. Ask as many parents as you can about the DAN docs in your area. Also, read the book "Children with Starving Brains" by Jacquelyn McCandless which details the DAN protocol. This will give you a very good idea of what should happen before you even see the doctor. Remember, that there is absolutely no proof that any of these treatments work, or even that the theories behind using these treatments are true. Furthermore, although some of these treatments may work in some kids, even those who are convinced they are helpful, say that they don't work in all kids. I am convinced, as are many others who are much more knowledgable than myself, that there are many different types of autism with different underlying metabolic pathologies. So I would not believe anyone who tells you that any medical treatment, whether it is mainstream or alternative, will work for all children with autism.
The last thing I want to say, and then I'll get off my soap box, is that one of the things that really bothers me about DAN, is that you start trying the diet and or supplements, and they don't seem to be working. Well, then they say, you need to remove more things from your child's diet like soy and all sugar, because there must be something else in the diet that is causing the problem. Then you need to do more supplements, you need to try this other thing, and that other thing. So, you just keep getting in deeper and deeper, and when things aren't working they don't say stop the treatment, but just keep adding more to it. It just seems to me that it is a HUGE leap of faith. I say try the things that are not harmful, both to your child's health and to your family's finances, and make sense to you and your family. Keep your individual child's issues in mind and try the things that seem to address his or her particular problems. Ask lost of questions, and keep your expectations low.
[QUOTE=gabu]one of the things that really bothers me about DAN, is that you start trying the diet and or supplements, and they don't seem to be working. Well, then they say, you need to remove more things from your child's diet like soy and all sugar, because there must be something else in the diet that is causing the problem. Then you need to do more supplements, you need to try this other thing, and that other thing. So, you just keep getting in deeper and deeper, and when things aren't working they don't say stop the treatment, but just keep adding more to it. It just seems to me that it is a HUGE leap of faith. I say try the things that are not harmful, both to your child's health and to your family's finances, and make sense to you and your family. Keep your individual child's issues in mind and try the things that seem to address his or her particular problems. Ask lost of questions, and keep your expectations low.
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As you had already said, and I want to strongly emphasize, that this is why it is so important to research your DAN doctor. As gabu indicated, it appears that it doesn't take a lot for a doc to become a DAN doctor so each DAN doctor has his/ her own views on how to apply the procedure for biological treatment. The ARI website also indicates what the doc is able to and not able to do.
I don't agree with the general statement that DAN docs will keep having you remove things from your diet for no reason. They perform regular tests on the children they are treating. The purpose to heal the child internally (physically) before doing other therapies, such as speech, if it is needed.
I can tell you that the 2 women I know whose children are almost done w/ the biological treatment are doing very well and have not had behavioral therapies while starting the process 2 yrs ago. Their sons are not cured, but they are more responsive and interative with their environment.
Thank all of you so much for responding. We did go for our first visit today. And it was costly and we have to go back next month, again another 300 and something dollars. My husband and I agreed that we are going to atleast 3 visits to give it all a try. We had already done the GF/CF diet for a year and saw no change. We tried B6/mag, from Kirkman (super Nu thera) with no change. So we are by passing those things. We are going to have specific test done that he suggested, but even with family helping, financialy speaking, we can only take this so far. but we are trying.
Again, Thank you so much. I stay so leary of doctors now, I tend to have a bad attitude towards all of them. I really needed your imput.
Thanks
Are you guys saying that insurance does not cover this even though they are licensed doctors?In my case, the doctor will not bill the insurance. We have to pay him then he gives us the paper work to file with our insurance ourselves. He is also a primary care pedi, but I can't afford him for that. I think it is a very sad thing about the insurance. I have heard that a few doctors are going that route. Our developmental pedi that did the testing and autism diagnoses, did the same thing. WE had to borrow/ take from our parents to get it done. It was about 1000 dollars 6 years ago. Everything seems so expensive for these kids now. I wish the medical community was a little more understanding with our families. Sometimes I feel like they are just making money off of our pain, and play on our emotions. Our insurance company BC/BS will not pay for any OT or ST therapy, now they decided they will not pay for my sons allergy medicine Singulair. It's 100 dollars a bottle at Walgreens. Thats what they quoted me. I'm sorry, just rambling and got the money woes.
[QUOTE=awagner]Are you guys saying that insurance does not cover this even though they are licensed doctors? [/QUOTE]
I have no doubt that insurance companies won't pay for this treatment. I think the reason is that there is no concrete proof that this treatment benefits or improves autistic children. That could be that maybe there has not been enough studies. I know of 1 dr group in Fla that have been compiling info over the years on the treatment of their patients.
Every parent I know who are going to DAN docs do it out of pocket...and everyone of them say they have seen improvement. I know that my insurance co will cover some of the expenses in the blood tests, ie testing for peptides.
I really believe that the way some of the DAN docs (I have heard of) apply the treatments (vitamin supplements, diets, etc) to fit a particular child does benefit the child in some way.
Hi everyone,
I've been comming to this message board for a month or twonow and have never posted anything.
I have 3 children, my youngest, my son is 9 and was first diagnosed at 3 with moderate to severe autism, now they say PDD-NOS but , the spectrum is the sprectrum to me after all this time.
I have never taken him to a DAN doctor. I have tried the GF/Cf diet. We have done the vit. from Kirkman labs. B-6/ mag. WE never had the money to try secretin so I just never took my son to a DAN doctor. But one was just brought to my attention that moved into the area, well about an hour away. I'm a little nervous, I've heard some people say that they are scam artist and bleed you dry of every dime you have. But I've also read about the miracles that they say are happening with Chelation therapies that they are providing. Does anybody have any suggestion on what I should look out for and not be caught up in?
a DAN dr is a dr who follows the Defeat Autism Now protocols for treating autism as a biological disorder, along with a mental/nuerological disorder. you can go to www.autismresearchinstitute.com to find out about the protocols and also locate a dr in your area. I'm fortunate, my Dan dr is also our new pediatrician. He's a licensed MD, and ND. Not the friendliest guy on the planet but so knowledgable and never pushes my son to do something he's not comfortable with. All of our appts are covered by insurance.I also wanted to add that any Dr worth his salt would never tell you that this disorder is curable, there is always room for improvement but never a cure. Use the old saying, if it sounds to good to be true, it is !!I am curious-what is a DAN doctor?
Kathy
The only thing I can suggest is to do your research. I personally believe in DAN doctors and the progress that is made with the specialized diets, vitamin therapies and chelation. I know of a group of women who are seeing DAN docs, 2 boys (of 2 moms) are currently undergoing chelation since last fall, 3 are at the phase of the special diets/ vit. supplements to heal the child's body and 2 have just started the process. The Autism Reasearch Institite has info about the process, as well as, some descriptions of the doctor in your area. See if you can find other people who are sending their child to that doctor and interview them. Also, there is a message board on yahoo...I think it has thousands of members who all have their kids doing chelation and/or seeing DAN doctors. I can't remember the name, but it is definately a good place to start in your research.
Good luck.
Hi Kellie,
We have only been once so far. We are doing some testing, you know, stool, urine, and blood work that has not been done before. The test are not back yet. As soon as we know what they say (the test), then we will know what to do next. We would really like to try chelation.
This doctor that we are seeing has being really nice, trying to help out with the schools and writing letters, etc.
So far this year the school has lost my son twice, let him go all day without eating and drinking. When I complained, they had him drink alot and then did not take him to the bathroom. Then they told us he had an aide but I found out that was a lie. The list goes on. So this doctor is helping to fight the fight we us for my son. It's more than any other doc has done or even offered to do.
Atleast he has ordered some testing that I had wanted my son to have done and the other docs would not do it. The yeast, peptide, and heavy metals, etc.
PS. I too, was thinking that a boob job and lipo may come in handy
Dr. Neubrander is the consulting physician for the MIND institute which is running a pilot double blind placebo controlled study results to be published in 2 years. Then 1 year to get grant and IRB approval for the full study and 2 more years before the results are released and mainstream medicine will than be able to acknowlege what mb12 can do. Until that time, the only studies are clinical studies of which dr. Neubrander has more pure data than anyone. We are trying to keep putting up the stories so that parents can see it is not a little subset of patients that respond, but a major subset. (I know since I work with him and do the database, you will take this with a grain of salt, but 9 out of 10 respond to the point that parents will not stop the shots as they see benefit) We are hoping to put 20-30 videos up a each month that I am in NJ. I spend every other month in NJ and when in Florida, I do not film. Notice, we put up the side effects, and even a failure. But as you can see, the majority of parents see benefit. I also forgot to add (a long time ago) that depending on your insurance and the docs, your child's insurance company may be able to pick up some of the expenses, such as a few of the blood work and supplements. For instance, BCBS of Florida will pay for a lot of the blood work and the vitamin B-12 shots. They will also pay a portion of the doctor's visits if you have a PPO and the DAN doctor is willing to bill BCBS. For parents who want more info on the process, Jaquelyn McCandless, MD wrote Children with Starving Brains - A medical Treatment Guide for ASD. You can purchase it on Amazon for . srs-mom, The MIND studies are 6 years out. Jims studies are complete but as they are not double blind placebo they will not be published. Thus, we put up the videos on our site. The statistics from Jims studies are 9 out of 10 respond to mb12 enough that parents will not stop the shots as the benefits outweigh the drawback of administering a shot. 20% of the responders have remarkable results in 1 year or less while 80% of the responders go at the slow steady pace as mb12 seems to build on itself. 20% have side effects which usually last between 1 & 6 months before subsiding. 10% have no side effects and actually have a calming or better sleep effect. 90% have an immune system boost (less colds, flu, fevers) 80% have an increase in cognative ability. 70% in affection and socialization and language. 20% will potty train within 2-3 months of the shots. The best source of information is the parents videos. We have 100 videos (about 11 hours). We asked the parents to not hide anything. Tell the good & the bad. This is the only way you as a parent can really see what mb12 does and does not do for children on the spectrum. Ok, had to chime in. As a whole DAN is the Biomedical approach to treating autism. Most treat by diet, supplementation and MB12. Most docs are very reputable but some just show up and get the label DAN and really do not adopt all the practices. That is the one aspect of DAN that really bugs me. It means that the parents must do the reasearch to find out if a doc is a good one or not. In most cases, you will get a doc who will work on treating the immune imbalances or disruptive biochemical pathways rather than drugging the child. Also, for those who do not think the biomed approach is real, you can check out what 98 parents say on video of what has worked for them. Check out www.drneubrander.com and click on the video link. There is more to treating kids on the spectrum than drugs and therapy. I have no child. I am the one who did all the filming for the website. And since April, we have not been accepting new patients. Again, do not take my word or the doctors word for it. Check out what 85 parents in 98 videos say. You may not be able to trust a doctor and I can understand that from what has happend to many of you, but I do think you can trust other skepticle parents who have posted their story. I currently film 3-4 parents a week. We will not stop filming the MB12 story till we have 200 videos on site. As it is, there is now 10+ hours fo video for your viewing pleasure. We started going to a DAN doctor. It was quite a wait for our first appointment, but we wanted to wait until dd was settled in a normal routine in school before we started the changes so we could easily document her improvements. We discussed the insurance earlier in this thread. Even thought the insurance company has the final say, I think it is very important for the parents to have a good open relationship with the child's doctor because the doctor is the one that will be able to help find the appropriate codes to use in order to get some of the stuff covered. For instance, when your child receives B-12 shots, the doc will know how to work the system to get the shots approved by the insurance co if the insurance co indicates that it might cover it. Kinda like getting OT services. Insurance cos. won't provide OT if your child is classified as having autism, but they will if the doctor indicates that the child has Sensory Integration Dysfunction. I know several parents who have children going to DAN doctors and I have noticed that the doctors of the children can really make the whole experience horrible if they don't agree with what you are doing. We have a family doctor because we have had problems w/ finding pediatric doctors who have a wholistic approach to medicine in our area (this was before I was enve considering DAN treatment). Our family doc agrees that it couldn't hurt to try and get our dd healthier. I am still not sure about doing the oral chelation, but we (the DAN doc, family doc, DH and I) will make that decision at a later date. We have included our family doctor in this process and have asked him to monitor our dd's health since the DAN doc is out of town and since he has been treating our dd for some time and knows her over all health. It will also ensure that we have a second opinion and an objective opinion about the procedures being performed on our dd. I trust our DAN doctor, but as a parent I also have to make sure that our dd gets the best care and that includes the advice of our family doctor. Hi A great book to read Biological Treatments For Autism and PDD By William Shaw Ph.D. It is up to date, comprehensive and easy to read. We read it thoroughly then approached our pediatrician with the information. He ordered the tests. He did not put autism as the diagnosis for the tests because that is not the cause of the symptom. The symptom ie diarrhea, feeding problems, rashes, reflux etc. can be used as the reason for the test. In fact, they are the reasons for the tests. It is true that many autistic children suffer from the same problems, but so do "normal" children. You can get most of the tests covered by insurance. It will give you a basis for implementing diets, supplements etc. Please read the book especially if you have limited funds because you will be knowledgeable. Knowledge is power to treat and help your child. The Great Plains Laboratory will give free consultations regarding the tests. My child had become completely non verbal, and he is now saying words again after using methyl B12 injections. We are at the beginning of our journey. Our speech therapist has seen in her practice children that have followed the recommendations in this book with great success. I do believe some children recover if treated early enough and aggressively enough. Others will see great improvement and better quality of life. A good website to visit is Sashas Recovery. I ran across it on the internet one night when I was looking for something. When I interview for a DAN! doctor I ask why they became a DAN! provider. I have found a doctor with a child that has autism, relative with autism etc. is usually in it for the right reasons. Make the calls. Ask the amount for consultations, follow ups, and for their general protocol for treating autistic children. If the doctor starts with a high cost treatment 1st without bloodwork, urine samples etc. I would go the other direction. Be Blessed in your journey. Okay, I am a family doctor turned SAHM who wants to be a DAN! doctor one day but now I don't have the time or $$$ to go to the conferences. Anyway, my son started with the PA, Lisa, at Dr. Neubrander's office in December 2006 and we started the M-B12 shots in January. He is definitely improving. We are adding supplements one by one, and I have been documenting everything that I can since the beginning. DAN! docs are like any other specialists in any profession...A few bad apples can spoil the bunch! Do your research as Little Byrd said, and read the starving brains book to get a running start. In terms of cost, my in-laws are helping us, and I'm not planning on stopping at this point even if we go even further in the hole. In terms of research...It's hard to do a placebo controlled double blinded study on autistic children because someone's child will NOT be getting the treatment! It is always difficult when research is being done involving children! Anyway, I just felt compelled to post...Happy Mother's Day, all!
I'm thinking of taking up 'exotic dancing' to make more money for all
this. Do you think anyone would pay a 37 yr old woman (in good
shape, mind you) to dance 'exotically'?! 
Maybe I could put a hat out in front of me with a sign saying that I
need to support my autistic child's medical care ... maybe people would
have pity and throw a few bucks in there?! LOL 
I no it can work and feel people see it as a scam. I met a lady who you can email who has done it but it takes a lot of time for sucess. Now here son is getting cell changes. She says Autism is the same symptoms as Mercury poisoning. My only thing is he learning to except what has happened to him. I just wanted to say that the DAN people no longer allow just any dr to put their name down as a DAN doctor. They actually have started researching each dr to be sure that they are using the DAN protocol. This is something new for them so I am sure that there are still alot of dr's out there currently saying they are DAN dr's even though they aren't. It will probably take years before DAN weeds them all out.
The results from the M-B-12 do appear promising. Is Dr. Neubrander
planning on doing a study-randomized, blinded, placebo-controlled?
This study would be very helpful for 2 reasons-if there is definitive
data out there to support this treatment then parents can get health
insurance companies to pay for it. Also, if such a study would show
undisputable data then it would become the standard of care and
thousands of children across the country would benefit from it.
I don't have a problem with DAN! doctors or the protocol per say. I do
have issues with individuals who take anecdotal evidence and then
charge vunerable parents thousands of dollars for a protocol that is
based on hypothesis. Now that hypothesis may be vaid-so why not prove
it?
You could video tape a thousand patients but that wouldn't accomplish
the same thing. I agree you have to start somewhere- but at some point
you will have to move from anecdotal evidence to the next step.
That's great. I look forward to seeing those study results.
I live in San Diego and I take my sons to the Osteopathic Center for Children, Dr. Shawn Centers is the Clinical Director there....he is his website..... http://members.cox.net/drshawn/ ....let me know if you need any more info!!!Daydreams, it has been 3 years yet no followup post on this.
Could you please share your experience with your DAN? Progress?
thanks
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