The DAN doctor visit & the aftermath

Last Friday, we finally visited the DAN pediatrician. I'm glad that I never mentioned his name in this blog, because he didn't impress either of us.

I guess I had my hopes up that this guy would impress my husband, and help me persuade him that the DAN biomedical tests and treatments for autism are safe and effective. Maybe that was too much to ask.

Before we met the doctor, we learned that JF has lost four pounds since his last doctor visit. That would have been when he started on his 15-day course of antibiotics, which became a 25-day course. This was day 25, the last day of antibiotics, and in those 25 days, he has apparently lost four pounds. That's a lot, for a four-year-old.

I liked the fact that the DAN doctor started by talking to JF. He asked him his name, how are you, and his age. (JF answered all three questions, but he claimed to be three.) Then the doctor asked us questions and started jotting things down. He seemed disorganized and distracted. When AF tried to ask him questions, the doctor either answered with anecdotes or didn't answer at all. I could tell when AF was ready to give up, so I started asking the doctor to clarify his points.

For example, one of AF's questions was, "JF is currently taking a lot of medications, prescribed by multiple doctors. And now you're adding more." The doctor continued jotting things down without saying anything. (I know, it wasn't technically a question, but it was an implied question and the doctor should have answered him.) AF gave up. I jumped in and said to the doctor, "Are you saying that these medications are so important that we shouldn't worry about how many different things he's getting?" I think his response was, "I bet you'll see an improvement after we start him on this."

I can understand a doctor has to cover his butt, and avoid saying the wrong thing, but this is ridiculous.

JF was well-behaved at first, but as the visit wore on, he became less so. Toward the end of the visit, JF bit my face. Hard. He wanted to go home.

We walked away with:

• A four-page printout of this doctor's typical recommendations for autistic kids, with various items checked, circled, or otherwise marked.
• One page of hand-written instructions.
• A lab form for blood tests.
• A prescription for Diflucan. As I understand it, we're to use this if the test results indicate a yeast overgrowth, but the doctor seemed confident that it would.
• A business card with the doctor's home phone number. If we have questions, we're to call between 7 and 8 AM).

The printout was like a form letter, with spaces for the doctor to fill in specific amounts and frequencies. It had sections on dietary changes, eradicating yeast, eradicating claustridia, normalizing the body chemistry, eradicating unspecified viral infection, downregulating inflammation, aiding digestion, chelation, genetic testing, and hyperbaric therapy. We're already trying some of the items on this printout because they were recommended by Dana Laake. The doctor marked these with "OK" or similar.

Under dietary changes, he put a check mark next to, "Casein free" and "Gluten free." The line for casein free says, "Substitute rice dream, soy." This conflicts with what I've read about a GFCF diet. I've read that Rice Dream is not gluten free. And I've read that we should be careful about using soy, because that is the third most likely offending protein, behind only casein and gluten. There's no point in switching from cow's milk to soy milk, only to switch again later.

Under dietary changes, he also put a check mark next to, "No artificial colors, flavors, and preservatives." I think this might be a good idea, but I'm having a hard enough time selling the GFCF diet to my husband, I haven't put much effort into avoiding these. Maybe later.

Predictably, the doctor's handwriting is awful. I asked him to read back to me what he wrote on the separate sheet, but by the time we got home, it was mostly Greek to me again. I think if I could choose between getting the recommendations immediately in awful handwriting (as we did with this doctor) and getting the recommendations in a Word document by e-mail, after waiting for two weeks (as with Dana Laake), I would rather wait for a Word document.

I had asked the doctor if he had an e-mail address so that we can send him questions. That's when he told me to get his home phone number from the receptionist. The receptionist wrote it on his business card with "7-8 AM" next to it. There's no weekday indication, but I'm guessing he's available only Monday through Friday. I don't know about the rest of the world, but 7-8 AM is my busiest time of day. I'm trying to get JF ready for daycare at that point, and I don't have time to pick up the phone!

On the way home, AF mentioned that he had a splitting headache and his stomach was in knots. Then he mentioned that he's had this for the past two weeks, and it gets worse every time we talk about this DAN stuff.

I didn't know what to say. I don't want to make my husband sick by talking about this DAN stuff, but I don't want to neglect JF by ignoring the DAN stuff.

While I was at work on Monday, AF called me and said, "Do you happen to know what time you'll be home?" I said, "No, I don't know." (I had a deadline on Monday, so there was something I needed to finish before I could leave for the day.) I asked why. He said, "We need to talk." He wouldn't elaborate.

While I was working, trying to meet my deadline, I kept thinking, wondering, what the H*** could this be about? I figured it could be about the DAN stuff, it could be about his mom (who has been near death more times in the past year than I can count), or it could be anything. I thought, "Maybe he's fed up with me. He's leaving me."

I finally got home, some time after AF had put JF to bed for the night. JF was not willing to go to sleep. (He's been slow to fall asleep for the past couple of months.) AF called a neighbor, Liz, and asked her to come over to watch JF for an hour so we could talk. After Liz came over, AF and I went to a bench in another neighbor's back yard.

He started by saying, "You know I love you very much." I waited for that BUT.

It turned out to be about the DAN stuff. I tried very hard to just listen. And when he had said everything he needed to say, I tried to convey that I really had been listening, by rephrasing what he had said.

This DAN stuff scares him. He describes it as being on the roof of a skyscraper, and having someone tell him to just step off the edge. That's why he's been making himself sick for the past two weeks. He's worried that the DAN doctors are just in it for our money. He's worried that the DAN doctors really don't care whether JF gets better or worse. The dietary changes scare him, especially now that we know he has lost four pounds. The list of medications and supplements that we're giving JF, and the fact that it keeps getting longer, scares him. I think what scares him the most is the chelation. Especially with doctors who do the verbal equivalent of patting his head when he asks a valid question about it.

He told me to thank our neighbor, BL, that he wasn't demanding that we stop all of it. BL had talked him out of that. AF did ask that we take chelation off the table. I was afraid to push it, but I was also afraid to completely let it go, so I said, "The only way we'll do chelation is if we both want it." I just hope he will eventually change his mind about it. Maybe after we have tried the diet, supplements, Diflucan, and whatever else the DAN doctors prescribe, maybe he'll see such an improvement in JF that he'll want to try chelation. (If we don't see a noticeable improvement from the non-chelation stuff, even I will be less willing to try chelation.)

AF also asked that we give the diet only two more weeks. I clarified, as diplomatically as I could, that JF isn't even fully on the diet yet. He's been completely dairy-free for three weeks now, and he's been gluten-free at home, but he still gets gluten at daycare and PEP. I was waiting until we had a statement in writing from a professional that said JF must be gluten-free (just like the one from Dana that says he must be casein-free), so that we could give that document to the daycare and PEP. I was worried that my say-so wouldn't be enough. Now, we technically have such a document, from the DAN doctor, but his handwriting is illegible, and he didn't write JF's name anywhere on it. So now I want to wait until we have test results.

After all of that explanation, AF seemed to let go of the idea of limiting the diet to two weeks. At this point, we were both all talked out, and we needed to let Liz go home. I had to say one last thing, though: "You scared me! I thought you were leaving me!" He apologized.

On Wednesday, AF brought flowers to me at work, to apologize again for scaring me. Peach-colored roses.

Wednesday was also JF's last day at PEP. (And I still haven't enrolled JF in any programs for the summer. Mostly because we still haven't sold the house.)

Yesterday, AF took JF to the lab to have his blood drawn. The tech looked at the form and said it would require nine vials of blood. It was too late in the day to ask the doctor about it. He left the lab a copy of the form, but postponed the blood tests.

Dana Laake's office has apparently received results from at least one of the four tests she recommended. The secretary left a message for me to call back to schedule a phone consultation. I called the secretary. (She seemed somewhat scatter-brained.) I asked her to let me know when the results from all four tests are in, and then I'll call to schedule the consultation.

Last night, JF developed a fever of 101.5. It's a good thing we didn't draw blood. I sent an e-mail message to Dana asking her about the Rhino Echinacea drops that she had recommended for any illness. I needed a clarification on her instructions.

She replied first thing in the morning. JF has had three doses of echinacea drops today, so I'm hoping that will help him recover.

Now JF is wheezing. He sounds croupy, which probably means asthma. I took him into the bathroom and ran the shower. It seemed to help a little. AF gave him an Albuterol treatment. I set up the humidifier. I'm going to sleep in his room tonight on the floor.