Sunday, February 1, 2009

Time to Assess the DAN!


It's been almost six months since we met our DAN! doctor and he's been treating Logan for about five months now. In the beginning, we took a ton of blood tests (15 vials!) and he spent hours trying to explain to us what the results meant.

I still am unsure what is going on with Logan biomedically that makes him act the way he acts. He is really quite the classic ADHD kid. According to the DAN! doctor, he has a genetic mutation that doesn't allow him to fully "take out the garbage at the cellular level." The toxins remain in his body and do him harm. The treatment they provide is supposed to heal his mitochondrial issues and as a result his neurological issues will improve and Logan can be the boy he wants to be. The treatments include a very strict diet although through our doctor's special allergy testing, we've allowed some foods back in and we also do B12 shots, vitamins, and some medication (not psychiatric).

Five months later, have we made progress? Maybe you can help me decide. It's not as black and white as I had hoped it would be. Before he started the diet and the DAN! treatments, he was hyper and very impulsive. I remember at the clinic where he received occupational therapy, they could barely get him to cooperate and many times, he would allow himself to be treated for just 15 minutes. He also had a really hard time playing with my friends' typical children. They often looked as though they wanted him to go home.

We had to change schools in September when we started the DAN! treatments so his teachers didn't really know the pre-GFCF Logan. However, an OT that did know the pre-GFCF Logan, had quit for a few months and came back to him this month. She was surprised after she first treated him because she felt he was a different boy who did a lot better at listening. My friends, who also knew the pre-GFCF Logan saw him recently and believed his behavior really improved. Lastly, my own little observation, a couple of months after starting our DAN! treatments, he started drawing and stopped scribbling. I always knew he could draw pictures but those moments were few and far between and many of those times, I had to stand over his shoulder and ask, "Ok, where are his ears, and his hands? How about some feet?" Now he likes to draw train tracks and New York City subway trains with names of the trains and their corresponding colors. ie. A,C,E trains are all blue. 1,2,3 trains are all red.

Other than this, I do not see any changes, he'll still hyper and impulsive. I don't know what to make of it. I question if the improvements he has made are due to him just maturing or if is it the DAN! treatments. Even my DAN! doctor couldn't answer me.

Recently, we were very tempted to give up. My husband and I were going to try psychiatric medication for educational purposes but if we gave him Ritalin or Strattera, how would we know if he was really healing? I couldn't let all of our investments in money and energy go to waste. Logan, himself has been through a lot as well.

We decided to stick to our original plan: give the DAN! doctor one whole year to make a difference. We even started Spencer with the DAN! doctor this month even though we haven't seen many results with Logan because we didn't think it was fair to Spencer to make him wait. This type of therapy is also supposed to work better with younger children anyway.

So there it is. Our progress is not black and white but clearly there is some progress, whether we can attribute it to the DAN! is still in question. I would appreciate any comments on this post, even, "Jenn, you are royally stupid," or "you picked the wrong link for mitochondrial issues." Whatever. I'd love to hear from you, especially those who have experience in this area as I have a feeling that many of this blog's readers are not GFCF.

addendum: After a reader asked for more info, here it is:

1. His diet prior to allergy testing- no soy, gluten, citrus, casein, chocolate, peanuts, eggs, caffeine, alcohol, artificial food coloring, MSG, preservatives like BHT, nitrites, no big fish like salmon or tuna
2. His vitamins are a mix from his doctor, they include a bunch of stuff. He's also doing fish oil.
As for his meds: I feel weird writing them all out here, if you want to know, email me personally.
3. His allergy test showed he was highly allergic to wheat but somewhat for soy and less for corn and milk. This test is called serial endpoint testing.
4. His blood tests did not indicate that he needed to chelate or anything like that.

(pictured: Logan tries to show me that he can wait patiently for his game to load up on the computer. Last year, when I wasn't supervising him, he ripped out a bunch (10+) of the keys. I still have no idea what motivated him to do that.)

12 comments:

Jackie said...

Hi i've been following your blog for a few weeks. I just wrote a thing on my blog about going off the diet. We are GFcf and starting Soy free this week...My daughter is autistic. I will tell you if you want to see how the diet is really affecting your son, go off for four days. I didn't think the diet was helping my daughter much, but when we went off, I had a devil child and i had no clue how good it was with the diet. If you want to check out my blog, it mentions the diet a very little its www.beitlerfamily.blogspot.com We also are going the DAN! route, and I must say while I just want the quick "fix", it is reassuring to know that someone at least cares about my daughter! Good luck to you!

Michelle said...

Five months is not alot of time, so I think you are right in giving it more time. When we started recovering our son, the beginning was very slow. We saw progres, but it was slow-moving. Now, we see progress constantly - every week there are new things our son says and can do - it is just amazing to watch!
Also, I realize you are with a DAN, but are you also researching and testing supplements to see if they help with your son? We have seen a few DAN's and the results that we have seen have mainly been because of my research. Yes, they are helpful at helping you put together the pieces of the puzzle, but you cannot rely on them 100%, it has to be a team effort. Look at your DAN as being a part of your team to heal your son.
Also, a blood test is not going to tell you whether or not heavy metals are an issue for your child. Go to labbio.net and request a kit for a urinary porphryns test (kit is free - test does not need rx) and have that run. Then call directlabs.com and request the Hair Elements kit (ask them for the autism discount, the test should be around $75) - Finding Hidden Hair Toxicities from noamalgam.com will help you read the hair test -- it is not black and white, so you will need help in deciphering the test results.
There is no quick fix for autism or adhd. It does take time -- and the payoff in the end is all that matters.
Also, gluten takes 9 months to completely rid the body, so you need to give the diet more time to do it's thing as well.
Hope this helps!
Michelle

Kim said...

Jenn - Glad to hear that you are seeing positive changes in Logan, regardless of the reason. I think you are wise to give the DAN! doctor a year and even to add Spencer as a patient. Like everything, every kid reacts differently so even if Logan doesn't get a great response, Spencer might. And a lot of what DAN! docs do does not work "overnight". It sounds like you found a doctor who also treats kids really individually which is great since DAN! should not be one size fits all (definitely some common things most kids try but there should be a lot of customization!) It would be great if this approach worked for everyone but like anything, it doesn't, however, you don't know until you try. I often point out to people that many many conventional treatments for a variety of illnesses don't work for everyone but that doesn't mean you just give up and don't even try! Hopefully both Logan and Spencer will see good things from this treatment!

Jenn said...

Thanks, I think I did the urinary porphryns test but not the hair test. I'll ask my DAN! doc about that. Thanks everyone for your two cents. It's so hard to keep the faith.

Margie said...

So is he still gluten, soy, dairy, crap free?

Ok a few things to think about with food.Gluten, dairy and soy those proteins are so much alike but you are off those items. Eggs and chicken are connected so chicken may be bugging him? Now in the lectins world gluten, dairy, soy and corn are connected. So corn could be bugging him. I would bet money on corn. We took out all the corn we could and what I didn't take out is not organic corn and that is a BIG difference here.

http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=220319567410&fromMakeTrack=true&ssPageName=VIP:watchlink:middle:us

Great dvd.

Now your son's gut is a mess, he needs to be off all these foods for awhile it could be 6 months it could be 3 years. What you do is take your child off the food for one year, you retest and add back in the food that no longer shows up on the test. I would never put a kid back on gluten, dairy, and soy. And I will always limit corn, just because of all of my research on these items.

Now supplements I have found my fish oil had soy in it. What you should do is sit down and email every single company and make sure they are safe for your son's diet. I just got done doing this because something was setting off my son. It was the fish oil. But 90% of the companies came back saying no soy but it's corn. So I will work on changing those. I just added protein here I think Hemp BIG difference. If you have not added vitamin D or magnesium and b-6 I would. I would also stop b-12 shots for a bit until the gut has had a change to heal.

Now you said blood test for detoxing? NO you need a heavy metal test we did the urine one there is also a hair one. You need one of those. Your son does have heavy metals in him that is not even a question. I think that would help TONS it did here. Also get a yeast test done. A yeast test will also check for parasites. Now metals, yeast and parasites will cause hyper, lead alone will cause your child to be really hyper.

Now you can detox metals with supplements, we don't do anything strong. Like buffered vitamin c for the lead, it took a few months to kick in but a BIG difference.

Please do not give up. This is why the board is here. I just tossed a lot at you. I think corn is a big issue, I think metals are a issue and yeast could be a issue. And just because corn didn't show up on the allergy test does not mean it is not bugging your son. Same with rice if you are subbing a lot with rice. But corn is really bad for a body that is having trouble with other foods.

Another great dvd I just watched is The future of food. I got it from the library, I am so cheap.

Others should have more, but please think about everything I mentioned. This diet does take time and if things are still bugging him it will take much longer, it could be one thing I mentioned it could be all of them. So please think, please google, please read, please email every single company.

One more final question are you using Rice Dream Milk?

Marcie Dingerson
Burger Professionals
REALTOR
Your Home Buying Specialist
www.MarcieDingerson.com
360-292-2569
http://threeboysandglutenfree.blogspot.com

Amy said...

Jenn: Your DS sounds very much like mine and your situation is very similar too (we've been on DAN about 6 months, no major improvements). You commented that the blood tests don't point to a need to chelate,
but did you do a hair elements test with Doctor's Data or a urine porphyrins test with the French lab? (I mention the French lab
because we did initially use Great Plains but that test came back with nothing remarkable.) For us, we saw the most improvement with the
diet - GFCFSF and Feingold (no artificials or preservatives) and very little improvement with the supps/medicines. However, the hair
elements test did show elevated Aluminum (could be from vaccines), Silver and Lead (could be from the toys or old house) and High Copper and Low Selenium which are usually indicative of mercury exposure.
The French lab also came back with a mild mercury toxicity and other xenobiotic toxicity. We also recently did the Dr. Yasko genetic tests, but haven't received the results back, to check for underlying
genetic mutations. We're trying to get the yeast under control andwill try chelating next month. I feel at this point that there must be some underlying heavy metal issue.

BTW, you can order the porphyrins test yourself w/o having to go thru your DAN. Here's the website: http://www.labbio.net/ or you can e-mail them at contact@labbio.net. The test costs $120. Here's also a great article to use to help interpret the test results: http://www.icdrc.org/documents/Rossignol%20porphyrins%20medical%20veritas%202007.pdf.

Karin said...

Jenn,

A few thoughts (just my opinion, others might disagree):

You might want to consider changing DAN doctor. Some are pro-medication. The DAN protocol works on core issues that take a long time to correct. Easily years. Five months is not much. You could continue DAN and at the same time use medication to help functioning immediately, with the hope that later, as the body improves with DAN, you'll be able to remove medications.

I have often heard that medication helps a lot short-term, but that problems tend to worsen over time and eventually they stop working because medications are not solving the root-causes.

My son is only 4 so we are not using meds yet, but I would be open to them in the future. So is our DAN. We see a developmental ped who suggested stimulants but I think it is too soon. I am open to trying them when my son is older. I am myself functioning a million times better with SSRIs so I know that medications are not necessarily evil, as long as you understand that they are band-aids (very useful ones) that don't go after the root cause.

Just my opinion.

Chris said...

Jenn,

I hadn't even figured out the GFCF diet 5 moths into this thing. I was still making mistakes in picking out allowed foods. We were GFCF for 1 1/2 years. It was our first intervention.

Medications and BioMed do not need to be an Either/Or choice. That is a false assumption. If you have a kid with symptoms that are making it hard to learn then treat the symptoms. Our kids don't have the growth and development time to loose.

But medications do come with risks that are unknown with children this young. Stimulant meds have been the most used but Atypical Antipsychotics are a very commonly the first recommendation. These meds do not have good studies, unless you count the 100,000 kids that are on them as study subjects. All of these medications can have side effects some include tics, sleep and eating issues, Parkinson like movements and hallucinations. Read about medications carefully, our kids typically need lower doses and will show side effects sooner than ADD and ADHD kids. One med may lead to two or three to balance all the issues out. This balancing act can take years to perfect and in most cases takes months with several tries at several meds till the right med is found. There are no lab tests to guide you, you are treating symptoms and are looking for symptomatic relief. At some point you will still want to try to treat the underlying cause of the symptoms if you can.

My son is almost 7. He is on no medications, we have done DAN for 3 1/2 years and low dose AC chelation for 2 1/2 years. This past month I did testing for Sean. His hair test is still a mess but on every thing else he looks exceptionally good. I mean real good, no bacteria, no yeast, no ammonia, no protein problems, no dysbiosis, no inflammation. Still has oxidative stress markers but they are down. This took 3 years of steady slow not chasing after every new fad BioMed intervention. We are no longer on a special diet. (his gut healed)

Sean is still autistic, he comes off as a shy to adults but kids know. He has significant verbal delays. (Tested at age eq of 4 yr 8 mos this past mo also for Verbal Skills.) He has some friends and some kids have rejected him. He throws "typical" temper tantrums and gets "typical" time outs. He has jobs to do around the house that he will do if asked yet still needs supervision to get dressed on a school day. He doesn't like school, says it is hard. I suspect it is the social aspect because he is doing OK in math and reading.

There will be those that will tell you recovery is a myth. I suspect they haven't met someone who is recovered. I haven't but I know that my child has gone further and progressed faster than any other child that his set of therapists ever have worked with. We don't put any one idea above another, OT, SLP, ABA, School Supports, Medications if needed for Concentration and help in school, BioMed are all should be avail bale for a child. What to use and how to use them is what being the parent is all about.

It isn't easy. Not a soul in my family understands and that is just the way it is.

Elizabeth said...

I think for me, the dichotomy of all this work is: kids age, mature, develop and grow all on their own. How much of the bio-medical intervention is actually adding to his growth, or may in fact be hindering it? Since there is no blind test or placebo effect with my child - how do I compare his natural development to what I see.

We went on holiday recently and I left the DMG at home, and I can tell you I will never, ever do that again. I second someones opinion above, give some of it a break and see the outcome.

Our questions were answered. Perhaps not all his supplements are necessary, but for now, something is working, so we keep at.

A clinical psychologist who stumbled on your blog said...

You should definitely consider giving the DAN treatment a break. You've already given it five months and have failed to see any changes. It doesn't surprise me that you haven't found the DAN treatment helpful. DAN approaches are based on pseudoscience. Those who promote a biomedical approach to autism point to Andrew Wakefield's work on immunity and gut dysfunction in autistics as evidence but that guy has been found to be a complete fraud who basically fabricated data (google his name for news stories if you don't believe me). Meanwhile you, your children, and your husband are being deprived of lots of good foods and are developing anxiety about how so many things are harmful for you. I know that there are a lot of parents who swear by the DAN approach, but have you ever head of the placebo effect? Also, like the poster above said, so many of the changes they attributed to DAN are a result of the normal maturational process. The best thing you can do for yourself and your children is to relax and focus on being with them in the present. DAN might give you a sense that you are doing something to help thme but it is a false kind of hope.

AUTISMOMMA said...

I don't really have anything to add that others have not already said. I did want to tell you how envious I am that you are so far along with you DAN! doctor and the treatments. In Indiana, there are only five DAN! providers to choose from and we are can't even get in until October....and that appointment was made in January. Unless I want to drive several hours, that is the only choice we have. Oh yeah, and we are also GFCF, soy-free, CRAP free (as Margie mentioned), and we try to eat organically as well.

Jenn said...

Autismomma,
Thanks for writing.
Is it possible to see if you can see a DAN! doctor via long distance? I have heard of a friend that lives in NY but "sees" a DAN! doctor in California. They do blood tests and urine tests and the doc reads the results and makes his recommendations. I know it is probably not optimal but having to wait until October would probably frustrate me to no end. BTW, before we did the DAN! doctor, we saw a special needs nutritionist named Dr. Maile Pouls, you can look her up online. We sent her our urine and she also wanted to do a hair/metal test too. We didn't stick with her because we decided to go with an MD., but just letting you know that that is an option too.