Hey everyone, I just need some input from those of you that have been to a DAN Dr or are waiting to get in with one. I guess I lucked out, just called yesterday and have an appointment on Nov. 15 for my 4 yr old. My question is do they help or is it hype? Those of you that have seen my posts know that I am a single Mom of 3, two of whom are on the spectrum and we are struggling, but as you all know we will rob peter to pay paul another day to get our kids what they need. The kids are on medicaid and will not reinburse for this visit. I am also worried that even by going to this appointment I am not sure that I will be able to afford treatment or other visits. I can only take the older boy right now, he is the more severe one. So any input would be greatly appreciated.
Kim
I think it depends on what you are looking to get out of the dr and what you would be willing to do.
Some questions to ask yourself...
Are you willing to change your childs and possibly your entire diet, meaning buying specialfoods,
Do you have the money to do other treatments such as supplements or creams that the dr might suggest
I may be the wring person to ask because I dont have a child I am a teacher. One of my students went to a DAN dr and i went with the family and found the dr to be very informative and very expensive. The stuff the mom had to do for the child was time consuming and expensive and made minimal changes inhis learning process and behavior.
Just my 2 cents hope ithelps
Both of my kids are being treated through a DAN doc. We actually switched DAN docs because the first one we were with wasn't aggressive enough (in my opinion). The Autism Research Institute website actually has a page where they list questions to ask the DAN doctor: http://www.autism.com/dan/ques2ask.htm A good DAN doc will work with you to find the best approach with in your budget. Just ask the doc what he or she feels is the most important intervention that you can try. You have complete control in how often you wish to see him/her and what treatments you are willing to try w/your child.
It can be time consuming, but it has been worth it to us. Both of my kids responded quickly to the biomed intervention and are doing very well.
We took our sons to a DAN doctor in May. Your doctor will likely recommend a battery of tests, the cost of which can definitely add up. In our case, the tests revealed that one of my sons had a parasite (!) growing in his intestines, and the other one had a bacterial infection. They also had yeast overgrowth. All of these conditions had to be treated with prescription medication.
I'm certain their regular pediatrician would not have discovered these conditions, so that in and of itself made all the testing worthwhile to me. We have seen slow, steady improvement since the treatment started.
Your doctor is likely to recommend the gluten/casein free diet, which is very difficult to get started on, but fairly easy to maintain once you're on it. If you live in a big city, that will definitely help because you will probably have a greater variety of gf/cf foods to choose from.
I suggest you read "Children with Starving Brains" by Dr. McCandless. It will help you understand where your DAN doctor is coming from and will provide a wealth of information. It was a revelation to me. Below is a link to Amazon if you want to read more about it. You can also order it direct from her site, and doing so will grant you an invitation to join her private discussion forum where she participates. Below is a link to her site.
Good luck!
Thanks everyone!
I am more than willing to change his diet, have had to do that back in May because we discovered a dairy and egg allergy, so the diet should not be a drastic change for him. I am still not very familiar with the Chelation treatments but will do my research.
Kim
Kim,
Not every child will have to do chelation. The treatment to the child is based on all the lab results. If his tests show he has elevated heavy metal burden, then chelation is an option....but it isn't the only one. As a parent, you make the final decision on what to do. You may opt for more natrual methods to get the body to eliminate the toxins. But something to remember is that in many cases, kids w/ elevated heavy metals have a difficult time excreting the metals because the metals impair the very methylation cycle the body uses to get rid of it. The www.autism.com website has more information about supplements, chelation, etc.
I'm with you on the expense issue. We have a DAN doc in our area and i had an appt set up for my son but had to cancel due to $$$. My son is doing alot better than he was when he had the appt scheduled(last year). One of the things I was wondering was from some of the other parents who have used the DAN doc is whether the idea of taking enzyme supplements was ever introduced instead of the diet? The enzymes are sold at any health/vitamin store and I have read that they work if your child has that issue. Seems better to me than actually going thru the whole restriction process, especially if your child will only eat less than 10 foods and they all would need to be eliminated. If they refuse the foods they are allowed what the heck do you do? let them starve?
Good luck!
I think that this is what frustrates a lot of us, we simply cant afford to help our kids and I dont know what to do about it. I will let everyone know how our visit goes next week. This is my last straw out of the basket because his behavior has gotten so progressively bad that they have cut his hours at school, so I pray this will help.
I really wrestled with whether to go to a DAN Dr. or a naturopath, and ended up choosing a naturopath. For a variety of reasons, I wanted to take a gentle, gradual, natural approach to my daughter's healing journey, without using medications. We're just getting started, but so far we've been very happy. The fact that a naturopath costs a fraction of what a DAN dr. charges is a bonus. Our initial visit was 90 minutes and cost 5. In many states (not ours, unfortunately) naturopathic services are covered by insurance.
If anyone's interested in finding a local naturopath, here's their national association: http://www.naturopathic.org
One point that helped me make my decision: apparently all you have to do to become a DAN dr. is go to a DAN conference, then pay a fee to be listed on their website. The level of experience varies a lot, and I'm not sure how much quality control there is?? One local mom told me, "Go to Dr. X, he'll start you on chelation right from day one!" That didn't sound like a positive thing to me.
I believe my daughter's gut and immune system are a wreck and that's the first place we need to focus our efforts. That's what we're working on with our naturopath right now, then we plan to address her yeast issue and consider natural chelation methods.
We go to our first DAN! doctor appointment this Friday, the 16th. I'm also a single mom and DEFINITELY don't have the $$ for what lies ahead, but am looking into any and every possible way I can raise money - garage sales, moving a family into my home to help with expenses, family members, etc. I was able to attend the last DAN! conference and let me tell you - there is no way you could walk away from one of these conferences and NOT pursue biomedical treatments. We started the diet three weeks ago and my son is going through the withdrawals and life has been pretty miserable for both of us, but I know the end result will be worth it. Even if the diet doesn't help his symptoms, it's forcing me to feed him healthier alternatives so it's good for him either way. For those who can't afford the DAN! services - check with your local Autism Society. I was able to get a 0 scholarship from them. Every little bit helps! Good luck to all of you on this journey!
our dan dr is on our ins. Shots are covered by ins. They sent them to our home at which I gave to Daniel. Do a test as you can afford it is what ours told us. Our dan is a md. Daniel has no gi problem strange .I am also thinking about a dan doctor but am so scared to see how much its going to cost. I am a single stay at home mom currently. I totally understand why you would choose this at the current time. I don't use a DAN currently. I would love to be able to afford it. I know many people think they can't do the diet. It is easier then it seems. I live in a very small remote area. I can find food in the store. I do give one word of warning. The diet can bring about difficult behavior. Detoxing is not fun from anything that is not good for you. I wish I had tried the Diet right out of the gate. It took me 7 or so months to finally take the plunge. There is so much they can have. The thing about a DAN is they will order the testing you need. I have trouble getting David's Dr to do a simple CBC panel. She flat out refused to do a stool test. Even though he had worms more then once. She still would not do the test. These are test you INS will pay for. I buy all his medication out of pocket some of it is pretty aggressive stuff. I am thinking about taking it all into her and saying "here is what I am giving my kid will you do some test" figure if she see's all the stuff she will get freaked out and run some test just to make sure I am not killing him. Not that I am he is doing great. Figure making myself look like a idoit might make her help me help him.Just wish someone would really trully help parents and take insurance. really! I have not gone because of the cost. Honestly if I know it would reverse the symptoms I would lay out the cash. Since there is no guarantee, I can't justify the cash outlay. We already do most of the things anyway.
Concernedpa.
I took ds to DAN doc once. We paid more than 0 just to talk to the doc (although we were there a couple of hours). We got the test kits but never used them because of the cost. Doc said if we ran them all at once we get a discount to about 00 or maybe it was a little more. I wish we could afford that. We did finally get some allergy tests done that were covered. We watched the movie Sicko last week. Now we want to move to a country with free health care. I feel the dev. ped. is not much help other than getting clonidine.juls35inva - We left the GFCF diet with enzymes with great success. Check out www.enzymestuff.com and the book Enzymes for Autism (the author's website is enzymestuff.) There is also a yahoo group for enzymes.
We still did many of the other interventions while on the enzymes (yeast, probiotics, CLO). Unfortunately we did not have any success with the GFCF diet which we were on for 6 months solid, but know many families that it helped tremendously.
Jennifer
[QUOTE=Genuine]juls35inva - We left the GFCF diet with enzymes with great success. Check out www.enzymestuff.com and the book Enzymes for Autism (the author's website is enzymestuff.) There is also a yahoo group for enzymes.
We still did many of the other interventions while on the enzymes (yeast, probiotics, CLO). Unfortunately we did not have any success with the GFCF diet which we were on for 6 months solid, but know many families that it helped tremendously.
Jennifer
[/QUOTE]
How do you know which ones to use and where to start? Should I get him tested first to see if he is even sensitive to Gluten or Casein? if he isn't then we don't need the enzymes right?
[QUOTE=shellymn44]I really wrestled with whether to go to a DAN Dr. or a naturopath, and ended up choosing a naturopath. For a variety of reasons, I wanted to take a gentle, gradual, natural approach to my daughter's healing journey, without using medications. We're just getting started, but so far we've been very happy. The fact that a naturopath costs a fraction of what a DAN dr. charges is a bonus. Our initial visit was 90 minutes and cost 5. In many states (not ours, unfortunately) naturopathic services are covered by insurance.
If anyone's interested in finding a local naturopath, here's their national association: http://www.naturopathic.org
One point that helped me make my decision: apparently all you have to do to become a DAN dr. is go to a DAN conference, then pay a fee to be listed on their website. The level of experience varies a lot, and I'm not sure how much quality control there is?? One local mom told me, "Go to Dr. X, he'll start you on chelation right from day one!" That didn't sound like a positive thing to me.
I believe my daughter's gut and immune system are a wreck and that's the first place we need to focus our efforts. That's what we're working on with our naturopath right now, then we plan to address her yeast issue and consider natural chelation methods.
[/QUOTE]
also check w/ your dan about where you could get scholarships, donations, discounts, etc.
Hi Juls -
In my experience the testing that mainstream doctors do for celiac or an allergy do not show if there is a sensitivity or an intolerance. I believe there is a urine test that may be helpful though. You can try Great Plans Lab website http://www.greatplainslaboratory.com/home.htm for more information.
For a good overview of where, what and how to start enzymes check out www.enzymestuff.com as mentioned above. I started with the book Enzymes for Autism, referenced the website and utilized the enzyme list on the yahoo groups endlessly. It is alot to take in and learn about but for us it has been very worth it.
DAN! docs can be VERY expensive and I agree with the previous poster that a naturopath can be just as valuable and effective.
Jennifer
Jennifer