My experience w/ DAN

[peglem]

I wanted to reply to your question w/o sidetracking Bubbasmom's thread (IVIG triggered more symptoms)

 

Hi Peglem,

 

After reading your post I was wondering if you have ever gone down the road of DAN with Allie? I don't really know your history, except that she has autism and pandas, so I am sorry if this has been discussed already. I don't mean to be a nosy mom, but there is so much that can be done for kids with autism beyond treating their pandas.

 

I have both of my kids with a DAN doctor (Scott Smith, PA who is with the Bradstreet group in Melbourne, FL). The DAN approach is what lead us to the dx of pandas in both of my boys. Without it I would still be spinning my wheels with two very wild boys on my hands (2 and 5 yo).

 

Anyway, I would say we started losing my youngest by the age of 4 months and by 12 months the pediatrician and I were really scared. I got him into the DAN protocol immediately ( and DC'd vaccines of course) and he turned around very rapidly (something to be said for early intervention here). One year later he has NO signs of autism but is still speech delayed and has pandas, but is doing ok on antibiotics.

 

As for my 5 yo, he was always a borderline kid with signs of autism. I think PANDAS is what pushes him on and off the spectrum. We have yet to get control of his pandas, but we just started IVIG, so I am hopeful. He used to have quite an auditory processing problem with stuttering and that is 100% gone due to Methyl B12 shots that I give him every 1-3 nights.

 

So, we still have a ways to go with my kids, but we have seen very steady gains with this protocol.

 

Anyway, when I was at our DAN office yesterday for my son's first IVIG tx, I asked Scott (who also has two pandas/autistic boys, one of which is fully recovered from autism)if they had many older kids/adults in the practice and he said they have quite a few. He told me that the most astounding day of his life was when he treated a 32 year old man with "secretin" and as soon as the first treatment was done he looked at his mom and said "thanks, mom". He said those were his very first words ever and they were spoken as clear as day!

 

I'm sure you have heard/considered this many times in your journey, but couldn't help putting in my 2 cents!

 

Stephanie

 

I want to start by saying that I'm thrilled that DAN docs have seemingly helped many children with autism. But.....

 

My experience has not been great. The problem I have is with the whole "protocol" mentality (I have this same problem w/ conventional docs). It seems to me that DAN docs are very prone to fads. By that I mean, it seems like every time some patients have success with a treatment, they all seem to try that treatment for all patients.

Early on in our journey, online correspondence with other parents of autism detailed their treatment regimens and I tried many things with my child, oh so hopeful that she would respond as wonderfully as theirs. Diets, secretin, supplements., etc...there was always something new that didn't work.

I think the problem I had was that they were treating autism as a single disorder and not looking for the individual, underlying cause(s) of my child's symptoms.

We twice saw a local developmental pediatrician who is a DAN doctor. He seemed shocked by my daughter's behavior, like it was unusual even among his patients. His recommendation was a trial of naltrexone. This was before the low dose naltrexone (which I did try last summer), but when I looked up research on it...well it just didn't make sense to me. My daughter was so miserable (at that time she was about the worst she's ever been) and the theory that she was beating herself up in order to get an endorphin high just didn't seem to me like that's what was going on, but also, blocking endorphins on a child who clearly is so miserable...well, that seemed like a bad idea to me. The SIBs have never seemed to calm her.

He did not order any tests to try to find out what was going on with my daughter...just suggested treatments that had worked for others.

We tried the whole Pfeiffer thing as well. I wish I had all the money that was spent on these treatments that were ineffective for my daughter- I could buy an awful lot of Cunningham tests!

 

I've heard many, many of those miraculous recovery stories...I hope they are true.

I wonder how things would have been different if early on, say @ 3yo, somebody had just thought to do a swab for strep...

[mom2gsd]

I tend to agree with you. I think parents have to be diligent with their regular doctors, as well, as a DAN, so they are not pigeonholed with the group. I hate to be treated with the "new and improved" anything, when there is nothing wrong with the tried and true. I have always had a good relationship with my DAN, he is willing to listen and we often try things I want, I wouldn't hesitate to move on if this wasn't so. I'm an older parent and not willing to play games, we've been doing this for way too long. The best doctor makes it a team approach and listens to the parent.

I do believe a diagnosis of autism can often times be a curse, most docs stop looking at them as individuals when they aren't improving, and push them under the umbrella, so from then on...we just blame the asd. Well, autism is not a disease process, it's a clump of symptoms that meet criteria, period. I'm with you, I want to find the underlying cause, where did my child go when he turned two?

[Fixit]

Go Gettum!!!

 

I tend to agree with you. I think parents have to be diligent with their regular doctors, as well, as a DAN, so they are not pigeonholed with the group. I hate to be treated with the "new and improved" anything, when there is nothing wrong with the tried and true. I have always had a good relationship with my DAN, he is willing to listen and we often try things I want, I wouldn't hesitate to move on if this wasn't so. I'm an older parent and not willing to play games, we've been doing this for way too long. The best doctor makes it a team approach and listens to the parent.

I do believe a diagnosis of autism can often times be a curse, most docs stop looking at them as individuals when they aren't improving, and push them under the umbrella, so from then on...we just blame the asd. Well, autism is not a disease process, it's a clump of symptoms that meet criteria, period. I'm with you, I want to find the underlying cause, where did my child go when he turned two?

[Stephanie2]

Peglem,

 

I hear stories like yours a lot on the internet and I just go back to my thought that you/they were simply with the wrong doc, or maybe you were in it at the wrong time (what years were you pursuing this?). I don't know how sensitive you are to all this so I will tread lightly here, but in my experience I have witnessed nothing but success. Here is a little more of my story:

 

First, my oldest is a borderline kid, not in the category of what you describe your daughter to be. However, my youngest was definitely headed for the classic autism with little/no speech, playing in the corner by himself, etc. And then there is my friend's 5 year old who I witnessed make quite a transformation (mild-moderate PDD-NOS, with mild speech delay, hypotonia, etc.). With all of them there was a remarkable improvement.

 

I started out with Andrew Levinson, MD in Miami who I credit for pulling my oldest out of auditory processing disorder and a mild-moderate stuttering problem. I also give him credit for turning around my 2 year old overnight (he was 14 months at the time). He did tons of labs on both kids and I have to tell you their protocol (outside of pandas, of course) is dramatically different as their labs were quite different. The reason I left his practice is b/c he did not: 1. detect pandas in either of my children, 2. know how to treat pandas when I detected it myself, and 3. he completely missed my youngest son's digestive disorder/inability to absorb nutrients, and 4. he does not have a child with developmental issues and I did not feel that he really "got it", ya know? Even with all that said, the man had some serious strengths and a good track record (he speaks at many of the DAN conferences and has patients from around the world).

 

I ended up switching to Scott Smith with the Bradstreet group in Melbourne. They have much experience with PANDAS (scott has two pandas boys himself), each practitioner in the practice has one or two autistic children of their own, and many of their staff have kids with autism. I watched my friend's son (who also sees Scott) turn around dramatically so I knew that they had to know what they were doing. They did more lab work for each of my boys and found some holes in each of their protocols. And I would like to add here that my friend's son has a very different protocol than each of my kids as well. This approach is very much not cookie cutter and I do not get the idea at all that they are following trends with our kids.

 

I get the feeling that you were doing this when the DAN protocol was not quite as advanced as it is now. Yes, I have heard that in the past it was all about chelation (no one has pushed chelation on any of our kids) and mercury poisoning, and the GFCF diet, etc. I think that the protocol has just advanced so dramatically in the past few years. In Scott's words, they recover 50% of the kids who start the protocol before age 5.

 

I also want to add that I would never be able to treat pandas without Scott's help, even if I ever decide to deviate and go to Dr. K for the higher dose IVIG. Many of the autistic kids have a very hard time tolerating antibiotics because it causes yeast/bacteria in their guts that causes other behavioral issues. This could not be any truer than with my boys. With my oldest son, each time we start a new antibiotic he becomes etremely violent/aggressive and we know it is due to yeast/bacteria b/c of some lab work that was done. When Scott treats the yeast (Diflucan, high dose probiotics) and bacteria (vancomycin, high dose probiotics) it goes away and he has a better time tolerating the low dose zithro. Without this back-up support, antibiotics would not be an option for him. And then there is my 2 year old, each time he takes an antibiotic he gets a rash/eczema, bloated belly/gas, and starts waking up and giggling. These are all signs of yeast. When I give him Diflucan it all goes away.

 

Anyway, overall my guess is that your DAN doctor was quite inexperienced, especially since he did not understand your daughters "behaviors". I would never be able to go back to a practitioner who does not have autism at home b/c there is no way they can get it or understand the desperation that we parents feel when we call up and need an antibiotic or diflucan STAT! And not to mention, Scott knows everything there is to possibly know about PANDAS, he is on the medical advisory board with Dr. B for the new website, pandasresourcenetwork.com, he knows Dr. K's protocol, he rubs elbows with Sue Swedo frequently, he knows Lauren Johnson. He is just really on the ball with PANDAS and autism.

 

Anyway, I will stop being a pain, it's just that I hate that there are so many parents out there who have had bad experiences and it is so different from my experience with DAN. I just have to think it is the practitioners...

 

Sincerely,

Stephanie Weeks

[peglem]

I'm not terribly sensitive about it. You can tread heavily if you'd like. I guess we're looking at about 10 years ago that we started desperately trying different supplements and what not, via info from ARI. 5 1/2 years ago was the experience w/ the actual DAN practitioner. He has a fabulous reputation- and a long waiting list for people trying to get in to see him.

Anyway, my intention is not to disparage the DAN doctors or alternative remedies- I think its wonderful that these doctors are at least willing to try- that's a lot more than any conventional doc would do back then. It has not been unusual for professionals that deal with autism on a regular basis (medical/educational/psychiatric) to find that my daughter is an unusual case. Its okay- we're on the right track now and I'm not bitter. It was VERY frustrating back then, however, having nowhere to turn. I got the same kind of treatment from the docs at the local children's hospital as well...nobody knew what was going on-nobody wanted to try to find out, and nobody would lift a finger to help. And yet, I know these doctors do good work and help a lot of kids- just not mine apparently!