House for sale, and other news

Today I will write about:

• House for sale
• Brain MRI
• Official diagnosis
• DAN! Nutritionist
• GFCF shopping
• Potty training progress

House for sale

Last Friday (5/4), we finally put our house on the market: www.107Chestnut.com. So now we have exchanged one source of stress in our lives for another. Instead of scrambling to prepare the house for the market, we are trying to live in the house without leaving any evidence that we live here. Every morning, we must de-clutter and arrange things just so. For example, in the bathrooms, we hide the towels that we're actually using and put up pretty, new ones. It irks me to hide such tokens of our existence, but I must swallow my pride.

We're both hoping the house will sell quickly, but for AF, it's even more important. He invested a lot of time and effort on this house over the past couple of months, for the express purpose of making it sell quickly. Our original goal was to sell the house (and buy the Jessup house from AF's brother) by April. We all know how well that worked out.

But now it's on the market. Now we cross our fingers and wait. (Do you know anyone who's looking for a house in the Gaithersburg area?)

Brain MRI

JF had his brain MRI on Tuesday (5/8). Typing this reminded me to check our phone for messages just now. The pediatrician had left a message this morning about the MRI. (Drum roll please.)

He looks normal...

except for a chronic sinus infection. (Is that all? And how can you tell it's chronic?) The doctor's message continued, saying, "That would explain his frequent illnesses. Let's put him on a 14-day course of Augmentin and take him to an ear/nose/throat doctor."

I am relieved to hear that JF's brain is normal, but I'm a little surprised. I had imagined that there would be something physically amiss in there, to represent the autism and staring spells.

I'm also surprised to get the results from JF's primary care doctor, rather than the neurologist who ordered the MRI. Will she call us separately, with her interpretation of the images? Will her interpretation be different than the pediatrician? Or is the pediatrician reading her interpretation of the images?

Yes, I worry too much. But this is my child's brain. And I don't trust doctors enough to just take the pediatrician's message at face value.

Official diagnosis

As you may know from my previous post, we took JF to see a developmental pediatrician on 4/26. We waited over a week to hear from her about our visit. Finally, I sent her office an e-mail message on Monday (5/7), asking for an official diagnosis. The office staff responded, saying that she is on vacation, but will answer my question by Wednesday (5/9). On Tuesday, she called me and said that she agrees with us that JF is on the autism spectrum. I asked whether she could be more specific. Which spectrum disorder does he have? She said something about PDD-NOS, but it sounded as if she didn't like that label. She said she would send us the letter that she had already sent to JF's primary pediatrician.

This diagnosis does not come as a shock to me. It gives me closure, of a sort. It's a tool, a magic word that will allow us to make progress in helping our son to reach his full potential. For now, as I see it, the benefit of having this diagnosis is mostly psychological, for us as his parents. I didn't start reading all of the books and web sites that I've read about autism, until I came to grips with the possible diagnosis.

My husband hasn't had time to do any reading about autism, yet. He's been very busy with the house. But now, now that the house is on the market, and now that we have the official diagnosis, maybe AF can start to explore resources with me. And maybe then we'll start to see more eye-to-eye about the biomedical treatments.

And later, maybe we'll need the diagnosis in order to fight for what he needs at school.

Nutritionist

One thing that the developmental pediatrician did for us was to recommend two nutritionists: Kelly Dorfman and Dana Laake. I could hardly restrain my glee when I found out that both of them are DAN! doctors!

However, neither one participates in insurance, and my insurance does not cover out-of-network doctors at all. So I asked for rates from both. The staff for Dana Laake seemed more responsive than that of Kelly Dorfman. The lady representing Dana quoted $180 for an hour and a half. So I made an appointment with her.

The staff faxed forms to me, and I filled them out as well as I could. I was impressed with the amount of information these forms were asking for. One page was a diet diary, which we faithfully filled in every day leading up to the appointment.

There are only a few things that I could complain about the appointment with Dana: She had so much to tell us, it was hard for us to get a word in edgewise. And at the end of the visit, I had to pay $360. We had stayed an extra hour, and she gave us test kits, so maybe it all works out.

In addition to the test kits, she also gave us a packet of information about nutrition. She asked us many questions and looked at every page of the forms I had filled out. Her advice started with removal of all dairy from his diet, and continued with a wide variety of supplements. She was typing as she gave us advice, apparently typing all of it into her computer. She promised to send us all of her suggestions in writing. I assumed she meant "send" in the electronic sense, so I gave her my home and work e-mail addresses.

She also tested JF for zinc deficiency on the spot, by giving him a taste of Zinc Tally. She said that it should taste awful if his zinc levels were high enough. When he tasted it, he briefly made a slight face, and went on with what he was doing. When offered more, he calmly said, "No." I take that to mean that he could taste it, but it wasn't as awful as it should have been.

She described the dangers of long-term use of Pulmicort, and gave me hope that his asthma might go away after we take him off dairy. She said that milk causes people to generate more mucus.

We told her about his frequent fevers, and how we sometimes alternate Motrin and Tylenol every four hours because we're afraid the fever will spike too high. She said that from now on, instead of Motrin or Tylenol, at the first sign of illness, we should give him a supplement. (I think she said zinc and echinacea.)

At one point, AF mentioned that I've been frightening him with talk about government conspiracy theories. I clarified that I had been talking about the CDC being unwilling to admit the possible connection between mercury/vaccines and autism, and I mentioned the Simpsonwood cover-up. Dana responded by saying that a CDC official recently made a statement about the possible connection. (I need to look this up.)

She gave us three test kits and promised to send us a fourth in the mail. She wrote the cost of each one (because it's better to pay up front and try to get reimbursed by insurance) and prioritized them with numbers, in case we couldn't afford to pay for all four. She said that we should collect the samples from JF before we make any changes in his diet.

After we left, I asked AF what he thought of her. I was worried that he would be unwilling to follow her advice, because of his skepticism about biomedical treatments for autism. He said, "I guess we can't trust the government to take care of us. We have to take care of ourselves." I breathed a big sigh of relief. We still don't see eye-to-eye on the DAN stuff, but we're getting closer.

GFCF shopping

I have been reading Karyn Seroussi's Unravelling the Mystery of Autism and Lisa Lewis' Special Diets for Special Kids. Both of these authors recommended DariFree, a potato-based milk substitute. One of these authors, I can't remember which, said that when you order DariFree online and in bulk, the price is equivalent to cow's milk, because it is in powdered form. I was intrigued. I looked at receipts going back a few months and I looked at prices of DariFree on www.vancesfoods.com. I calculated the costs of various beverages, per quart:

• Cow's milk from Giant = ~$0.75
• Almond milk from Safeway = $2.42 - 3.35 (depending on brand & flavor)
• DariFree from My Organic Market = ~$1.60 - $1.86 (depending on flavor)
• DariFree (original flavor) canisters online = ~$1.50
• DariFree (original flavor) bulk box online = ~$1.20

So, in my area at least, I can't get DariFree at a price comparable to cow's milk. But it's cheaper than almond milk!

I'm hoping that ordering DariFree online will save me from having to drive to My Organic Market in Rockville, which is apparently the only store in my area that has it. (It's only a few miles from where I work, but traffic always sucks when it's convenient for me to go to that store.) So I ordered 6 cartons of DariFree from www.vancesfoods.com. (After I had done my calculations above, and decided to buy the DariFree online, then I found out that there was a $13.09 shipping charge! This adds $0.36 to the cost of each quart!)

Today after work, I finally returned to Whole Foods. I was able to find a whole cart-full of GFCF groceries this time. I think when I visited the first time, I was so intimidated by the concept of finding GFCF stuff, that I didn't really try. This time, I've had more experience, and I had a gluten-free product list and a dairy-free product list printed from www.wholefoods.com. Having to look for unfamiliar products in an unfamiliar store, combined with checking for those products on two lists, made it quite an ordeal. But I did it.

Of the many things I bought were GFCF cake mix and frosting mix, because my little boy will be four years old this month!

Potty training progress

Since the beginning of the year, JF has been pooping on the potty about once a month. Suddenly, at the end of April, he pooped on the potty two days in a row. I started making a note of it in his medication log. Then, he took a break for about a week.

This week, from Sunday 5/6 to today, JF has pooped on the potty six days in a row!

Not only that, but he suddenly seems to understand that he should use the potty ring for when he needs to sit and poop, and that he should lift the seat up when he needs to stand and pee. This was a difficult concept for him, just a few weeks ago.

I wish I had been keeping a detailed log of what he is eating and drinking all along. I'm tempted to say that his successes coincided with decreases in dairy, but I'm not really sure. Oh, well. I'm just happy that I've had a break from cleaning poopy underwear.