Wintergreen

We're going to Wintergreen, Virginia this weekend. A neighbor couple has a house there, which they normally rent out, but they generously invited the three of us and two other neighbor couples to spend the weekend there. So I thought I should give a quick update.

After almost two weeks, Dana Laake (JF's nutritionist) has finally sent us her recommendations for JF: six pages of pure gold, in my book. We have also finally collected hair and urine samples for the test kits that she gave us:

• Urine for organic acid analysis
• Hair for mineral analysis
• Urine for porphyrin profiling
• Urine for casein/gluten peptide measurements

I mailed the hair sample yesterday, two of the urine samples this morning, and the last sample this evening. (I had to wait for it to freeze.)

Now that that's done, we can change JF's diet, starting with removal of all dairy. I need to call the daycare and his PEP teacher about this.

I need to go to Village Green Pharmacy and pick up what the nutritionist recommended:

• ProbBioGold
• Rx Formula I
• Cod Liver Oil
• Nordic Naturals Ultimate Omega
• Yummy Bears Multiple Vitamin Mineral
• Liquid Calcium Magnesium
• Rhino Echinacea Liquid
• Garlic Willow Bark Ear Drops

I've never had a grocery list like this before!

I've also sent a long e-mail message to many family members outlining what I've learned over the past few months about biomedical treatments for autism. A few responded with words of support. Some haven't responded yet. My dad responded more than anyone, with polite support, but also his opinion that, "this business about mercury in vaccines might be a paper tiger."

I pounced on that. (No pun intended.) I sent him some links to articles describing just how dangerous mercury in vaccines really is, including http://www.generationrescue.org/misinformation.html and http://www.autismwebsite.com/ari/dan/deth.htm. I don't fully understand the detailed chemistry article, but I thought he might understand it because he has a PhD in chemistry. (He was a university chemist over thirty years ago.) I hope the articles impress him.

So that was my quick update. Well, it was relatively quick.

In memory of my mom

This post is dedicated to my mom (1943-1993). This Monday will be the 14th anniversary of her death.

She was raised on a dairy farm in Pennsylvania. She milked cows in the morning before school, and once forgot to change her shoes in between.

She had four brothers and four sisters. They were descended from Irish immigrants.

She was very pious, and seriously considered becoming a nun.

She went to college. She met my dad at a beach party, where she was babysitting someone's children. My dad approached her and said, "Your children have the same beautiful blue eyes that you do."

She raised two sons and four daughters. The fourth daughter died as an infant of a liver problem. There were also miscarriages between the last daughter and the last son. She taught me how to change a diaper. When one of her children had a minor injury, she would rub it and say, "Beana beana basharoo." She taught me how to sing lullabies, including,

• "Tora lora lora"
• "When Irish eyes are smiling"
• "I gave my love a cherry without a stone"

For many years, she was a stay-at-home mom, tending the kids, the house, the laundry, and a vegetable garden, all without the benefit of the Internet, a microwave, a clothes dryer, or a telephone. She taught me how to hang clothes on the line, take them down, mend them, and fold them. She encouraged me to help her bake. She took me on long walks to visit neighbors.

Later, she worked as an assistant to elderly patients in their homes, in a hospital laundry department, in a newspaper advertising department, and in a grocery store. I eventually worked in the same grocery store, to earn money for college.

She was shy, focused on the needs of her family, and didn't have very many friends. One friend was a neighbor, NS.

Mom was almost 50 when she died in a car accident, on May 21, 1993. She and NS were on their way home from a grocery store. NS was driving Mom's car, and Mom was in the passenger seat. Two drivers were speeding along the highway, apparently drag-racing. One sped past. The other tried to avoid hitting my mom's car by swerving onto the shoulder, but NS had apparently moved to the shoulder at the same time.

Mom was pronounced dead at the scene. NS was in a coma for a few days before she died. We will never know exactly what happened that day.

I attended the last day of the trial with Dad. Both drivers had fled the scene, but one came back. The one who came back was the defendant. There was no evidence of alcohol. There was discussion about where on the road Mom's car was at the moment of impact, to determine whether any responsibility for the accident was on the part of NS.

The defendant's side of the story was this, as far as I can remember: He was a teacher, or was otherwise employed by the school. He had heard that a student was planning something, which involved driving out of state. He was worried, and followed that student, trying to catch up with him. When he caught up, they rolled down windows and had a conversation while speeding down the road. The older driver wanted the younger driver to pull over so they could talk. The younger driver refused to pull over. The older driver continued the high-speed conversation.

Hearing all of this, I was very angry. What could be so important that you must disregard the rules of the road and the safety of other drivers on that road? Why couldn't you just let the younger driver go? Why did my mom and her friend have to die?

After the trial was over, Dad approached the defendant and said, "For what it's worth, I forgive you." The man seemed grateful and gave Dad a hug. I'm proud of Dad for doing that.

Over the years, my anger has melted away. I still miss her dearly. I wish she could have attended my wedding. I missed her advice when I was pregnant and then when I was breastfeeding. I miss her now, as I consider what to do about my son's various illnesses. I still have dreams about her. The pain never goes away, but I've learned how to deal with it.

Recently, a friend of mine was involved in an accident where the other driver died. My friend had apparently been drinking. This accident brought back painful memories for me, but I wrote a post in support of my friend. I received some angry comments from friends/relatives of the deceased. I hope I responded appropriately.

On television, there is usually a good guy and a bad guy. It's black and white, with no gray in between. The bad guy is evil, through and through. The good guy is innocent of any wrong-doing. Both fictional programs and news programs portray people this way. The news about my friend's accident portrayed my friend as the bad guy, because he had killed someone by drinking and driving.

I believe that drunk driving is irresponsible and morally wrong, whether it results in an accident or not. I believe that the laws against it need to be stronger, to save more lives. But my friend is not evil, and I thought that someone should stand up in his support, to counter the news media. He is just like you and me, except that he made a deadly mistake. I'm hoping that he has learned from this mistake. I believe that he is paying for his mistake.

I hope that the friends and family of the man who died can someday find it in their hearts to forgive my friend.

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.