Autism and DAN Doctors

[floridafam]

What do you think? If you had an appointment with a DAN Dr. would you go?

Sometimes they seem really worth listening to and other times they seem like they are just out to make a buck.

We have an appt. for DD and we are thinking about forgetting the whole thing. We are not willing to try chelation and we have tried the GF/CF diet and we did see some results with that but she is no longer on that diet and is making huge strides in gross motor, language, eye contact and she potty trained this week.

She does have a local Pediatrician that she sees on a regular basis and she has some other medical issues going on that are being addressed right now.

If you have taken your child to a DAN Dr., what did they tell you to do? What worked, what didn't and what was your overall opinion of the situation?

Thanks!!!

 

[Eeyores Butterfly]

I am not familiar with DAN doctors so I can't help you there.

The GF/GC can work for some children, I knew one that it greatly reduced episodes of aggression. Some childre have deficiencies in the glucosamine receptors in their brains and these are the children that do well on the GF/GC diet. Not every child will respond to it. As for chelation, well, that's just quackery in my book.

How old is your daughter? What kind of education program does she receive? I have worked in a classroom that used Early Intensvie Behavior Intervention (EIBI) which is a form of ABA. The results were amazing. I was a sub so I only did maintenance with the kids and was only in there once a month or so, but it really showed me the difference it made for those children. The last time I came back it was like entirely different children. They were even engaging in associative play! It's not a cure, but many children become indistinguishable from their neurotypical peers after going through EIBI, or at the very least are able to be mainstreamed for a good portion of the school day once they are school age.

 

[LisaR]

We took our son many years ago. I was skeptical but willing to listen - plus I was desperate to help my son. He had me for awhile. I actually thought it might be worth trying. However, right towards the end of the visit, he lost me. This happened about 9 years ago so I don't remember the exact conversation but the guy basically said that his treatment would be so successful that my son didn't even have to go to the appointments! He said I could go, hold this vile of stuff and my son would see results. I tried really hard not to laugh as I walked out.

My SIL has taken her son to one for a few years for allergy problems. She swears it has helped. I rarely see their family because we live in different states but DH was there on business last month and visited with them. He said their son had big shiners under his eyes (classic allergy sign) and his nose poured the entire time.

 

[aristocatz]

What do you think? If you had an appointment with a DAN Dr. would you go?

Sometimes they seem really worth listening to and other times they seem like they are just out to make a buck.

We have an appt. for DD and we are thinking about forgetting the whole thing. We are not willing to try chelation and we have tried the GF/CF diet and we did see some results with that but she is no longer on that diet and is making huge strides in gross motor, language, eye contact and she potty trained this week.

She does have a local Pediatrician that she sees on a regular basis and she has some other medical issues going on that are being addressed right now.

If you have taken your child to a DAN Dr., what did they tell you to do? What worked, what didn't and what was your overall opinion of the situation?

Thanks!!!

It doesn't hurt to give them a listen, as long as you are honest about what you are willing and not willing to try. There is ALOT of research out there right now about biomedical treatments working in conjunction with behavioral treatments, and DAN doctors have more to offer than just GFCF & chelation.

Just remember that what works for one child might not work for another. Do the research before you try anything & be aware of the pros and cons.

I would also never give up your regular pediatrician-even if you do decide to see the DAN doctor. Keep your pediatrician regularly informed if you decide to give the DAN doctor a try.

 

[aristocatz]

I am not familiar with DAN doctors so I can't help you there.

The GF/GC can work for some children, I knew one that it greatly reduced episodes of aggression. Some childre have deficiencies in the glucosamine receptors in their brains and these are the children that do well on the GF/GC diet. Not every child will respond to it. As for chelation, well, that's just quackery in my book.

How old is your daughter? What kind of education program does she receive? I have worked in a classroom that used Early Intensvie Behavior Intervention (EIBI) which is a form of ABA. The results were amazing. I was a sub so I only did maintenance with the kids and was only in there once a month or so, but it really showed me the difference it made for those children. The last time I came back it was like entirely different children. They were even engaging in associative play! It's not a cure, but many children become indistinguishable from their neurotypical peers after going through EIBI, or at the very least are able to be mainstreamed for a good portion of the school day once they are school age.

Just wanted to add about the chelation: it is actually a very successful and legitimate procedure, approved by the FDA, that has been around for a long time to treat (non-autistic) people with legitimate heavy metal poisoning.

The "quackery" part is whether heavy metals are causing autism for autistic individuals & if removing the metals will reverse the autism-that aspect of chelation is not currently scientifically supported as a treatment for autism.

EIBI is just intensive ABA. Research shows that intensive hours of ABA (30+/week) when a child is younger will lead to more positive outcomes, as opposed to starting behavioral treatments when they are older. Many school systems are now finally following the research and creating ABA classrooms for preschool-aged/kindergarten aged children. They offer several hours of intensive ABA teaching per week. "EIBI" no different than "ABA" though-same procedures, these classrooms are just ensuring longer sessions of treatment & just as you mentioned, if the ABA programs are done correctly, these children can have amazing results!

I used to have a client who got diagnosed at age 2, became involved in an intensive 35 hour/week home-based ABA program (no diet, no chelation, no DAN doctor), & was taken off the spectrum at age 5. A key factor with this kid was he started ABA services within a few weeks of being diagnosed and began at a very young age.

 

[Eeyores Butterfly]

I mentioned EIBI because it is the specific program I am familiar with, although certainly any well done ABA program will yield similar results. You are right- for best results it needs to be started immediately after diagnosis and while the child is still preschool aged. That's why I mentioned it would depend on the age of her daughter. I have seen it yield results when started after the child is school aged, but they were nowhere near as dramatic. That's true of most interventions for children with special needs- the earlier that treatment is started the much better the outcome. Some kind of early intervention is critical.

 

[Forevryoung]

I used to have a client who got diagnosed at age 2, became involved in an intensive 35 hour/week home-based ABA program (no diet, no chelation, no DAN doctor), & was taken off the spectrum at age 5. A key factor with this kid was he started ABA services within a few weeks of being diagnosed and began at a very young age.

I would bet big bucks that this particular child was incorrectly diagnosed at age two. I'm not saying something wasn't going on and that they didn't need early intervention services just that the diagnosis was wrong.

Early intervention definitely works but ABA programs are not for every child on the spectrum. There are significant, inherent flaws in the majority of ABA programs and I encounter many young children (3-5 yr olds) who spend 5-6 hours a day running trials (NY is the ABA capital, for better and worse).

 

[Eeyores Butterfly]

Not every ABA program is perfect and many people have issues with ABA because in the beginning many ABA programs relied on the use of adversives which gave it a bad name.

I can't speak for the NYC programs, but the program I worked in the kids did discrete trials all day, but it wasn't non stop. There was plenty of time for play and we took our cue from the kids. If they started to appear overwhelmed we stopped. So while it would appear that the kids were doing trials for 8 hours, they really weren't. The trials were mixed in with opportunities for individual and group play, snack time, nap time, etc.

I have seen kdis with classic autism go through this program and come out indistinguishable on the other side. Not every child has that outcome, but in the time I was with the classroom every child who went through the program made tremendous gains.

 

[Forevryoung]

I can't speak for the NYC programs, but the program I worked in the kids did discrete trials all day, but it wasn't non stop. There was plenty of time for play and we took our cue from the kids. If they started to appear overwhelmed we stopped. So while it would appear that the kids were doing trials for 8 hours, they really weren't. The trials were mixed in with opportunities for individual and group play, snack time, nap time, etc.

I have seen kdis with classic autism go through this program and come out indistinguishable on the other side. Not every child has that outcome, but in the time I was with the classroom every child who went through the program made tremendous gains.

It's not just the City, it's the entire state is in love with ABA

The full day preschool programs for children with autism (that are ABA programs) are 6 hour days. They do not have nap time but there is time for lunch and playground and other programs... However, I'm talking about kids who have data taken all day every day and every aspect of their lives is driven by that data... and these aren't kids who have play skills so their down time is minimal at best. I know programs are all different, but even some EI kids have 5 hours of ABA built into their day (entitled to 25 hours a week). Yes, there is a 10 min break here and there of course but still.

And I'm not disagreeing with the gains made through ABA, and I continue to question the autism diagnosis if ABA is "curing" a young child- significant gains, certainly. Indistinguishable from neurotypical children means that ABA could be considered a cure for these children and it is far from such. I would be questioning the individuals providing the initial diagnosis and examining if possibly these children were simply significantly speech/language/communication delayed.

I'm not saying ABA is horrible or useless, just that careful consideration must be made when considering the goals of an educational program (which should than drive the instructional method not the other way around!).

 

[KirstenB]

OP, I asked a similar question about 6 mths ago over on the Disability Board and several parents who had tried DAN answered. You may want to post your question there too. For now, I've decided not to pursue the DAN route, but our dd has made big strides this year in special ed preschool, too. If she weren't making progress my answer would be different.

 

[Mouse House Mama]

I think DAN doctors are like any other doctor. Some are good some not so much. I know people who have had great success with their DAN doctor. Of course this doctor is one of the best in his field and actually speaks at conferences etc. The problem is that no two autistic children are the same. What works for some may not work for others. Can I ask why you are against chelation? I know many people are but I am curious why you have written that off?
There are many things a DAN doctor can do to help you. Also, something to look into is a pediatrician that specializes on autistic children. They are out there but are few and far between. A regular ped is good but if you can find one who knows more about your child's diagnosis it might offer you some more suggestions.
DAN doctors treat the whole body, not just the "quirk" if you will. They find out why you have XYZ and treat that. They don't just treat the problem, they find the cause.
Ultimately you have to do what you find to be the best for your family. Look at more than one doctor. Check their credentials. Don't be afraid to ask questions and do your own research.
Good luck!

 

[jodifla]

It's not just the City, it's the entire state is in love with ABA

The full day preschool programs for children with autism (that are ABA programs) are 6 hour days. They do not have nap time but there is time for lunch and playground and other programs... However, I'm talking about kids who have data taken all day every day and every aspect of their lives is driven by that data... and these aren't kids who have play skills so their down time is minimal at best. I know programs are all different, but even some EI kids have 5 hours of ABA built into their day (entitled to 25 hours a week). Yes, there is a 10 min break here and there of course but still.

And I'm not disagreeing with the gains made through ABA, and I continue to question the autism diagnosis if ABA is "curing" a young child- significant gains, certainly. Indistinguishable from neurotypical children means that ABA could be considered a cure for these children and it is far from such. I would be questioning the individuals providing the initial diagnosis and examining if possibly these children were simply significantly speech/language/communication delayed.

I'm not saying ABA is horrible or useless, just that careful consideration must be made when considering the goals of an educational program (which should than drive the instructional method not the other way around!).

Yeah, especially with some NIH studies now saying that up to half of all children DXed with PDD-NOS actually never had it at all. The stability of that DX at a young age is highly questionable.

I was talking to one researcher and she said that will all the wrong labeling going on, some young teachers really have no idea what true autism looks like anymore.

 

[Forevryoung]

Yeah, especially with some NIH studies now saying that up to half of all children DXed with PDD-NOS actually never had it at all. The stability of that DX at a young age is highly questionable.

I was talking to one researcher and she said that will all the wrong labeling going on, some young teachers really have no idea what true autism looks like anymore.

I would be interested in reading that research- I am a "young teacher" (speech therapist) and while I know what true autism looks like, it is simply because of the environments that I have placed myself in.

These are statistics that make me question the diagnosis process- A mother of one of my students was told that there are 500 incoming kindergarteners. 190 of them have been diagnosed on the spectrum. I understand that our school district provides great services. BUT 38%??? (this figure came from the school district)

I see students that have a PDD-NOS diagnosis that I don't agree with but I keep my mouth shut. As long as a child is receiving services that are appropriate, I don't care what a piece of paper says. However, it does matter when it comes to the cost (not just monetary) of the diagnosis to the child, the parents and family unit, as well as society overall.

 

[Mouse House Mama]

I think unfortunately parents fight to get a DX so their child can get the help they need. Meaning that the child may have delays etc. but not enough that the school will help, but with the DX they have to help. Does that make sense?

 

[ez]

as the mother of an almost 5 year old child with "classic" autism...I would like to chime in and agree that autism is being way overdiagnosed......lots of these kids that get an autism diagnosis are neuro typical late bloomers, or maybe on the adhd side. I think the kids with true autism is more like 1 in 10,000 than 1 in 150. Please don't flame me just what I see each and every day. My oldest is 25 and lives a fabulous life....great girlfriend great career...but if you saw him at age 2,3,4...by todays standards I'm sure he would have easily gotten a PDD diagnosis at least...he barely said a word till he was 4 years old.... had a few what could be considered stimmy behaviors...kept to himself. Back then we just rode it out and everything turned out fine.
The school system doesnt know what to do with my autistic son cause...as an earlier poster said...it seems like they don't know what real autism looks like and how to accommodate it. Just my 2 cents.

 

[jodifla]

I think DAN doctors are like any other doctor. Some are good some not so much. I know people who have had great success with their DAN doctor. Of course this doctor is one of the best in his field and actually speaks at conferences etc. The problem is that no two autistic children are the same. What works for some may not work for others. Can I ask why you are against chelation? I know many people are but I am curious why you have written that off?
There are many things a DAN doctor can do to help you. Also, something to look into is a pediatrician that specializes on autistic children. They are out there but are few and far between. A regular ped is good but if you can find one who knows more about your child's diagnosis it might offer you some more suggestions.
DAN doctors treat the whole body, not just the "quirk" if you will. They find out why you have XYZ and treat that. They don't just treat the problem, they find the cause.
Ultimately you have to do what you find to be the best for your family. Look at more than one doctor. Check their credentials. Don't be afraid to ask questions and do your own research.
Good luck!

You definitely hear of kids having some successes with DAN doctors. But so many charge so much money -- they absolutely price-gouge the parents. I'm always incredibly skeptical of that....it plays off vulnerable, disparate parents who will do anything for their kids.

 

[Mouse House Mama]

You definitely hear of kids having some successes with DAN doctors. But so many charge so much money -- they absolutely price-gouge the parents. I'm always incredibly skeptical of that....it plays off vulnerable, disparate parents who will do anything for their kids.

I agree that it is so expensive. The reason is because the health insurance companies will not pay for this kind of treatment. They do not believe there is any merit to it and it is not endorsed by the AAP or the CDC so they refuse to cover it. Yet they will cover Chiropactic care. The terrible thing is that not all DAN doctors are equal so unfortunately there are many parents that are being taken advantage of because the doctor simply does not know enough. It really does make me so angry that they (doctors) do not tell parents of autistic children all of the possible treatments that are out there. Parents should be able to make an informed decision based on facts and options. Too many people (doctors) don't know enough about the DAN protocol and never let the parents know that there are things that might work. It just seems so unfair to the children and the parents.

 

[floridafam]

I just had a huge reply typed out and lost it.

We have already seen another DAN Dr. in Melbourne, Florida and were not impressed. He seemed very nervous and unsure of himself.

This appointment is with Dr. Kartzinel (the same Dr. who has been all over the tv as he treats Jenny Mcarthy's son.)

We aren't sure what to think. DD seems so good most days-she does talk, is potty trained now, smiles, etc.

I don't know what we would do. How do we know these Doctors are on the up and up? Why do all the labs have to go out of the country?

DD was in an ABA program until recently but they said she wasn't getting enough hours so they stopped. She did make gains in ABA but also seemed very unhappy there and has blossomed since stopping the program. It's almost as if they were trying to teach her in a way that she didn't want to learn.

What types of tests do you think a DAN Doctor will do? She's been tested and tested by our other Doctors-she had an MRI, all kinds of blood work for by the Neurologist and tons of other tests because she has a possible metabolic disorder.

 

[jodifla]

I just had a huge reply typed out and lost it.

We have already seen another DAN Dr. in Melbourne, Florida and were not impressed. He seemed very nervous and unsure of himself.

This appointment is with Dr. Kartzinel (the same Dr. who has been all over the tv as he treats Jenny Mcarthy's son.)

We aren't sure what to think. DD seems so good most days-she does talk, is potty trained now, smiles, etc.

I don't know what we would do. How do we know these Doctors are on the up and up? Why do all the labs have to go out of the country?

DD was in an ABA program until recently but they said she wasn't getting enough hours so they stopped. She did make gains in ABA but also seemed very unhappy there and has blossomed since stopping the program. It's almost as if they were trying to teach her in a way that she didn't want to learn.

What types of tests do you think a DAN Doctor will do? She's been tested and tested by our other Doctors-she had an MRI, all kinds of blood work for by the Neurologist and tons of other tests because she has a possible metabolic disorder.

I think it tells you a lot that she was so unhappy there, and blossomed after she left ABA.

This is just me, but I'd run from any doctor Jenny McCarthy used.

Have you seen the book The Mislabeled Child? Pretty fascinating book by a pediatric neurologist and her internist husband. They go through disabilities like Dyslexia, ASD and ADD and ADHD, talk about why they are often misdiagnosed and then how to get help for each issue.

I can't remember how old your daughter is, or what you believe her issues are.

I flew home last year with two women....one had an autistic daughter and was describing that they were just pulling her off the GF/CF diet because it had no effect after a year, and her doctor advised her it doesn't work for many children.

 

[Forevryoung]

I think unfortunately parents fight to get a DX so their child can get the help they need. Meaning that the child may have delays etc. but not enough that the school will help, but with the DX they have to help. Does that make sense?

Nope it doesn't make sense for ONE major reasoning with theory-

Before the child reaches kindergarten, if they are "below average" (on a bell curve, standardized testing), they receive services in either early intervention or as a preschooler with a disability. To receive these "young child" services in the United States, you do NOT need a diagnosis of any kind.

By the time the child is entering kindergarten, under IDEA (special education law), the child simply has to fit into one of 13 "classifications." Specifically, one of the classifications is Speech and Language Impaired (which most of these children could fall under to receive services). Again, no specific diagnosis is required, only significant delays.

Of course, if a parent chooses to take their child for evaluations to receive a diagnosis, they are more than welcome to. And many parents would want a diagnosis for many reasons... I'm not disagreeing with that. BUT getting the incorrect diagnosis of autism has a high potential to be harmful in a majority of situations.