The usual brain dump

Today I will write about:

• The real estate market
• Dietary changes
• Wintergreen
• Eye doctor
• Supplements
• Antibiotics
• Autism to-do list

The real estate market

We still haven't sold the house. Several people have come to see the house, and this is very high traffic, considering the market right now. But it's all just a big tease.

Dietary changes

Last Thursday, after gathering hair & urine samples from JF for the tests that Dana Laake recommended, we finally started changing his diet. At first we we were planning to remove only casein (dairy), because Dana didn't say anything about gluten. But then I realized that the wheat bread in our fridge has dairy in it. I've been on the GFCF diet for two months now, and I've managed to stock our pantry with items that are free of both gluten and casein, but I would have to start all over to find items that are just casein-free.

We decided to compromise. At home, JF is now on a GFCF diet. At daycare and PEP, he will be on just a casein-free diet, until we get a recommendation from a medical professional to remove all gluten as well. JF's appointment with the DAN! pediatrician is next Friday, June 8th. Maybe he will provide that recommendation. I will remain on the GFCF diet until then, too.

I forwarded Dana Laake's recommendation document to JF's PEP teacher. Over the next few days, we discussed the snacks and beverages that JF gets in PEP class. I also told her my impression that the public school system is required to provide appropriate items, when a diet is medically necessary. She disagreed. I told her that I will research the question, and in the meantime, I would be happy to send in a few snacks. She said that she has enough to last until the end of the year, and that I should plan what to send in for ESY.

When I dropped off JF at daycare last Friday morning, I told the teacher that we are removing all dairy from his diet. She asked whether it's an allergy. I sent an e-mail to Dana asking whether it's an allergy, intolerance, or hypersensitivity. She responded the same day, saying that it is an intolerance, and it is harmful to his body. When I dropped off JF at daycare on Monday, I also dropped off a pitcher full of DariFree.

Wintergreen

Our long weekend at Wintergreen was everything that I expected to be: Constant anxiety about various things (on my part), punctuated by moments of bliss, sandwiched between hours of driving each way.

The only interesting part of my anxiety was the birthday cake. I had brought a cake mix and frosting mix with us and attempted to make a GFCF cake for my son's birthday. With help from the neighbors who came with us, I succeeded in making a delicious cake, but it wasn't entirely GFCF. The frosting called for margarine, but the only margarine that we could find in a nearby store had whey in it. I decided that we would cheat on the diet this once, for my son's birthday, but only because we are just starting out on this diet. I chalked it up as a learning experience.

One of the moments of bliss was wading in a lake with my son and watching him splash about.

On the way back home, we stopped at AF's brother's house where they were having a cookout. They respected our diet, but they weren't prepared for it. After my brother-in-law poured BBQ sauce all over the chicken on the grill, I found unacceptable ingredients listed on the bottle. I asked for some chicken without sauce. My brother-in-law happily grilled more chicken for us, plain. I thought about asking him to clean the grill cooking surface before using it to cook our chicken, to avoid contamination from the sauce already on it, but I decided to save it for another day.

They also had birthday gifts for JF. Two of JF's cousins (3 months older and 6 months older) helped him open his presents. Then they argued with each other about how they were going to play with JF's new toys.

Eye doctor

Last Friday, I took JF to an eye doctor. I've been going to the same office (a different eye doctor, but the same practice) twice a year for several years. At every visit, I've seen newspaper articles on the walls and books on the shelves about visual therapy for kids with autism and ADD. But it wasn't until my last check-up that I considered bringing JF in. It was as if I was seeing all of this stuff about autism for the first time!

The eye doctor who saw JF on Friday was Dr. Appelbaum in Bethesda. First he tested JF's eyesight by asking him to identify numbers of various sizes, 20 feet away. JF did very well on that test.

For the next test, the doctor moved a penlight slowly side-to-side across JF's face. JF moved his head and body rather than moving his eyes. The doctor asked JF to hold his head still and, to my amazement, he complied! JF held his head still while the doctor moved the light side-to-side. Then I could see that JF's eyes did not move smoothly with the light. They jumped!

For the last test, the doctor moved the penlight slowly toward JF's nose. As he got closer, JF closed his eyes. Once, however, they stayed open just long enough for me to see that they jumped again, this time outward.

Dr. Appelbaum explained that JF's eyesight is fine, but his vision is immature. The test with the numbers 20 feet away measures eyesight. The tests with the penlight measure vision development. JF's current level of vision development is normal for a one-year-old, but not for a four-year-old. He has a visual developmental delay, and he is probably seeing double.

The doctor recommended vision therapy, in 50-minute sessions, twice a week, for $125 per session. He said that the best-case scenario is that he will need this for five or six months. The worst case scenario is one to two years. This is not covered under my vision plan at all, and my medical plan does not cover out-of-network doctors at all. And Dr. Appelbaum is not in the network.

Dr. Appelbaum said that I should ask my employer for an upgrade to a plan that covers out-of-network doctors. I thought this was only possible during open enrollment at the end of the year, or when there's a "family status" change. I tried e-mailing HR today, but they said to call the insurance company or wait for open enrollment. I will keep trying.

Dr. Appelbaum also recommended indoor bifocals, to help JF see a little better until the therapy starts to work. If I can't arrange for insurance to pay for the vision therapy, I might just get JF the bifocals.

Supplements

Last week, I decided to order the eight supplements that Dana Laake had recommended, rather than try to pick them up myself. The Village Green Pharmacy's weekday hours are not convenient for me, and I couldn't squeeze in a trip to the pharmacy on our way to Wintergreen on Saturday. I had to order the Rx Formula separately from the other seven supplements, because it was a compounded prescription.

On Wednesday, a package arrived from Village Green Pharmacy, with seven supplements. Everything was fine except that the calcium/magnesium supplements were in pill form, rather than liquid, and the ear drops were grapefruit and mullein rather than garlic willow bark. And I thought it was strange that the ProBioGold was not sent with an ice pack, even though the bottle and the invoice said to keep it refrigerated.

I called the pharmacy yesterday. The guy who answered the phone said that the ProBioGold is okay without refrigeration for three days; they did not have any garlic willow bark ear drops, but they could order some if I gave them the brand name; and I can exchange the calcium/magnesium pills for the liquid. I sent an e-mail to Dana Laake asking for the brand name for the ear drops, but I haven't seen a reply yet.

Tomorrow morning, I'll go to the pharmacy in person to pick up the Rx Formula, and to exchange the calcium/magnesium supplement.

I want to start all of it, all at once. However, Dana's recommendation document advises, "Start all new supplements one at at time at a much lower dose and increase gradually to a full dose." This document doesn't say how long to wait between starting each supplement, or how much lower the dose should be at first. I've just sent her another e-mail message asking these questions.

I think we'll start with the probiotics. I wanted to start him on them right away, but AF wanted to ask JF's regular pediatrician about them first. However, he kept forgetting to call, so tonight he told me to go ahead. Tomorrow, JF willl start taking probiotics!

Antibiotics

JF has been on antibiotics for 18 days now, because of his chronic sinus infection. This is the longest course of antibiotics that he's ever had. The original prescription, from JF's primary pediatrician, was for 15 days. The ENT doctor added another ten days.

During this time, we haven't seen any signs of infection. Normally, JF gets sick about once every two to four weeks. He was due for an infection when we started the antibiotics, but they have apparently kept the infections away. In that respect, antibiotics are magical.

However.

Based on my observations during this course of antibiotics and the last course, I think I'm starting to see a pattern. I think antibiotics cause the following symptoms in my son:

• More spacey, shorter attention span
• More easily frustrated
• Less expressive language
• More aggression (when combined with dairy)
• Diarrhea (when combined with dairy)
• The mystery full-body contact rash (My theory is that he had fungal metabolites in his urine, he wet his bed at night, and we forgot to change the sheets before naptime.)
• Occasional odd statements about colors that aren't there

These effects could all be explained in other ways, so I'm not sure about any of it. But I'm relieved that he has been off of dairy for a week and will start probiotics tomorrow. Also, I'm trying not to get my hopes up that the probiotics will help persuade AF and the PEP teacher that the biomedical treatments for autism have value.

Autism to-do list

I want to make sure we are doing everything that we can for our son, but it's hard to keep track of everything:

• Behavioral therapy: JF has been attending PEP-INC since September, and he has made wonderful progress. He will also have ESY services this summer. But we need to sign him up for something (or some things) for those weeks during the summer when he's not going to ESY. I'm worried that daycare isn't enough during those weeks. But we don't know when we'll be moving, so it's hard to make any plans.
• I want to investigate the ABLLS (verbal behavior program) that Mom without a Manual uses.
• We've started tracking more details about JF's life. When he was born, I started a breastfeeding log in a spiral notebook. By the time he was weaned at a year, it had become a medication log. Now, we're tracking medications, foods, beverages, poops, behaviors, and new phrases in a spreadsheet.
• I want to read more books about autism. I've just finished reading the book about vaccinations by Cave. I need to return it to the library tomorrow and buy my own (more recent) copy. I need to find out what vaccinations are remaining for JF, and consider the pros & cons of each one.
• We took JF to an eye doctor, and we're figuring out whether we can afford the recommended therapy.
• JF had a hearing test last summer, and they said his hearing is fine. But I wonder whether this is one of those "standard" tests that only skim the surface, like the eyesight tests that overlook vision problems.
• Dietary changes: JF has been casein-free for a week. At home he is also gluten-free. Maybe the DAN pediatrician will recommend that we remove all gluten when we see him on the 8th. I need to continue looking for GFCF products. I still haven't found a bread that I like, but JF seems to tolerate the rice bread, somewhat. I need to find out what the laws are about public schools providing appropriate foods.
• Supplements: I want to research each one, but until I get a chance to do that, I trust Dana Laake's recommendations.
• Biomedical tests: We spent nearly $400 to have JF's hair and urine tested, using the test kits that Dana gave us. I tried asking JF's primary pediatrician and the developmental pediatrician to approve these tests, to improve chances that insurance will reimburse us. But they both claimed that their approvals wouldn't help. Two of the invoices arrived in the mail today. I need to send them to insurance with claim forms, and cross my fingers.
• I'm wondering whether the DAN! doctor will ask for more lab tests, perhaps blood tests, since we've already done hair and urine tests.
• JF's PEP teacher suggested we ask JF's developmental pediatrician whether any of his current medications can be consolidated. She's worried that these meds, especially in combination, have side effects, including making his autism symptoms worse.
• On top of all of this, I've realized that we've been neglecting something very important. We used to read books to JF, a few times a week at least. We had never managed to make it part of his bedtime routine, but we still found time to do it occasionally. Now? Not so much. I tried reading to him recently, and he seemed bored and wandered away. We must make time to read to him, EVERY DAY.