Adenoidectomy

It's been a while since I've written because I had another deadline at work. I will continue to have these deadlines until maybe the end of July, so my posting may be sparse for a while.

Today I will write about:

• Lamotrigine
• CST
• Dr. Cohen
• Bronchitis
• Yasko
• Rebuked
• Adenoidectomy

When I write, I try to keep things in somewhat chronological order, but I also try to focus on only one topic at a time. Sometimes these goals conflict with each other because events in my life become very intertwined.

Lamotrigine


Back in March, JF's neurologist prescribed Lamictal because he had an abnormal EEG and he often stares off into space. We're assuming that the staring spells are sometimes mini-seizures, and sometimes just normal daydreaming. Then we switched to the generic form, Lamotrigine. We've been increasing the dosage, per the neurologist's instructions.

Then JF was on a 25-day course of antibiotics for his chronic sinus infection.

While JF's school year was still in session his teachers reported that he was increasingly spacey.

As I see it, there were two possible explanations for his increasing spaceyness:

• The antibiotics are causing or aggravating a yeast overgrowth problem, and the probiotics aren't helping, yet. (We started the probiotics long after we had started the antibiotics.)
• The Lamotrigine is making him more spacey, rather than less spacey. I've heard that this is possible. (The cure is worse than the disease!)

I have no idea how to figure out which theory is correct. So I typed up the relevant sequence of events and faxed it to the neurologist. I was hoping to talk it over with her. She left a message on our phone for us. She said to drop back to three Lamotrigine tablets in the morning and three in the evening. (We had worked our way up to four & four by this time.) She also said that she wanted to see JF in July, rather than October.

We obediently dropped back to three & three tablets per day, and scheduled an appointment for July 24th. But I'm annoyed that I didn't get to talk to her. If she had called me at work at that time of day, I would have been able to talk to her, but she chose to use our home phone number instead, and didn't bother to try a different number when no-one answered. I understand that doctors are very busy, but I'm still frustrated.

We continued the probiotics for a week after the antibiotics ended. Day by day, I could see JF becoming slightly more alert and more talkative. But was it because of the timing of antibiotics/probiotics, because of the decrease in Lamotrigine, or because of the other supplements we've been giving him? I have no idea.

CST

My sister (Sister1) has been telling me about CranioSacral (or Cranial Sacral) Therapy. At first, she was telling me that I should try it to see if it helps my scoliosis. Recently, she has been suggesting that we try it on JF for his autism. She sent me this link: http://www.upledger.com/clinic/autism.htm.

The theory behind CST sounds like pure quackery to me: The therapist uses gentle pressure, about the weight of a nickel, on the body. This pressure somehow moves the bones of the skull, which in turn moves the dura mater beneath it, releasing built-up tension. The theory is that the dura mater normally expands and shifts as the brain grows, but in some people, it gets stuck. This theory is used to explain why some autistic kids bang their heads, supposedly to counteract the internal pain of a restricted brain.

What frightened me about Upledger's article was this statement, "The therapy must be continued until the child has reached full growth, because once the dura mater has lost its accommodative ability, it must be physically stretched by a therapist." That raised a red flag in my mind. It implies that you must continue the therapy for years. Maybe it's true, but that makes it sound like a classic scam.

I politely told my sister that I'm very skeptical about this. I'm keeping an open mind about it, but there are so many other therapies that I want to try on JF first, that have more science behind them.

However, I have been hearing about this from different places. The Spring 2007 edition of "New Developments" (a newsletter published by Developmental Delay Resources) has an article about the lymphatic system and lymphatic drainage therapy. It sounded similar to (but much more plausible than) CST. They use gentle pressure to massage the lymphatic system. Sure enough, at the end of the article, there was a reference to the Upledger website.

I have two possible theories about CST:

• Maybe it works only because the people who try it believe in it. Belief can be very powerful. If parents believe that a particular therapy will work, they will raise their expectations, and the child meets those expectations.
• Maybe it really works, but not for the reasons that John Upledger described. Maybe it works because of lymphatic drainage, rather than because of movement of the dura mater. Or maybe it works for some other reason.

I'm keeping an open mind, but this is still at the end of the list of therapies I want to try.

Dr. Cohen

On Monday 6/25, I took JF to see Dr. Cohen for a second opinion about vision therapy. He did the same tests on JF that Dr. Appelbaum had done, in slightly different ways. For example, instead of moving a penlight around to test JF's ability to track it, he used a wand with a tiny cube on the end. The cube had a different picture on each face. He asked JF about each picture while he moved the wand around. I think Dr. Cohen's way of doing things is much better for a 4-year-old.

Also, I didn't get to see what JF's eyes were doing this time. But I guess it doesn't matter.

Dr. Cohen said that he saw no reason for JF to have vision therapy. My jaw dropped. I told him about Dr. Appelbaum showing me how JF's eyes were not tracking the light appropriately for his age. I asked, "What could explain the difference?" He offered two theories:

• JF might have an intermittent vision problem and maybe he just happened to be okay that day.
• The supplements that Dana Laake prescribed may have improved his vision.

There's apparently no way to know which it is for certain. I asked whether we should come back for another evaluation, and he said we can come back in a year.

And now, I've heard from multiple people that Dr. Appelbaum prescribes vision therapy for everyone.

Bronchitis

After JF's visit to Dr. Cohen, it was my husband's turn. He took JF to the pediatrician the same day because JF was still coughing. He had been coughing for several days. The pediatrician diagnosed it as bronchitis and prescribed more antibiotics, Azithromycin.

JF has been off of antibiotics for 16 days, and now he's back on them again!

This time, however, we started him on probiotics the same day. I think it is helping to keep the spaceyness at bay this time, but not the diarhea.

On a happy note, this doctor visit also revealed that JF has gained back three pounds. Maybe this means that adding more nuts and peanuts to JF's diet is helping to compensate for his lack of enthusiasm for rice bread. And maybe this will make it easier for my husband to accept putting JF on a GFCF diet.

Yasko

On Tuesday 6/26, I attended a meeting of a group of parents who are exploring biomedical treatments for autism. Most of the parents at this meeting are trying the Yasko protocol. It appeals to me because sounds like a much more scientific approach, but they said it starts with a $700 genetic test.

I told my husband about it the next morning. At one point I said, "This scientific approach makes Dana Laake's recommendations seem like just throwing supplements at him and seeing which ones work." He said, "That's what I've been telling you all along!"

So maybe he'll decide that the Yasko protocol is worth investigating. I think I should wait for him to bring it up again, rather than nag him to tell me what he thinks about it.

Also, one parent at the meeting championed CST.

Rebuked

When we took JF to see Dana Laake back in May, she gave us four test kits. By 5/24, I had sent all four to the labs with hair and urine samples. We were told it takes three weeks to get any test results returned.

On 6/14, Dana sent me an e-mail message saying that she has gone over test results and we can discuss them the next time we meet. I started saving up all of my questions for that meeting, instead of sending them to her as they came up. I called her office and asked whether the results for all four tests have come back. All of them except the opiate peptide test have come back. I asked them to call me when they get the fourth one.

On 6/19, I sent a message to Dana asking whether the fourth one has arrived yet. Dana said her office will call the lab. I continued to save up my questions.

On Thursday 6/29, I gave up and sent a long list of questions to Dana. (It was pretty long, but not as long as my blog posts.)

She responded, politely explaining that she doesn't have time to respond to all of my questions right now, but we can schedule a phone consultation for the week of July 9th.

I don't blame her for this, but I'm frustrated. (And I'm hurt, but maybe I'm being oversensitive.)

Adenoidectomy

On Thursday 6/29, my husband took JF to the ENT doctor for a follow-up. The ENT doctor said JF should have his adenoids removed.

JF has had surgery before, to have his inguinal hernia repaired. That surgery was unavoidable, because a hernia can quickly turn into a life-threatening situation.

I'm not so sure about an adenoidectomy. I have done a few minutes of research on it, but I've found nothing useful so far.

I guess my fear is that we'll remove JF's adenoids and then someone will tell us, "You should have tried such and such first!"

Feeling hemmed in

Today I will write about:

• Father's Day
• JF is still sick
• Are the supplements effective?
• Looking for a better vision therapy doctor
• Looking for a better DAN doctor
• Knoebel's

Father's Day

Just over a week ago, I sent an e-mail message to my dad asking, "Is there anything that I can give you as a Father's Day gift?" He replied the next day with the title and author of a book that he wanted. I ordered it and specified his address for shipping. That was easy!

Then at some point when AF was away from the house, I grabbed a plain sheet of paper and folded it in half to make a Father's Day card. On the front, I wrote, "To my favorite daddy" in pen. (AF tells JF that he is his favorite child, which is a joke because he is his only child.) On the inside I wrote, "Happy Father's Day" and JF's name. I gave the card and some crayons to JF and encouraged him to draw all over it. (Lately, he has been hesitant about drawing, as if he is afraid of doing something wrong.)

I hid this creation in a kitchen drawer, intending to take it out on Father's Day morning and have JF hand it to his daddy.

Yesterday morning, I woke up before either AF or JF, responded to some e-mail messages and otherwise tried to get stuff done on the Internet. By the time the boys woke up, my brain was in high gear, working on the many challenges of raising an autistic son. I went upstairs and sang Good Morning to You to JF. I asked AF whether he slept well. I asked what time he's planning to leave. (He was visiting with friends that he hadn't seen in long time.) He said 9:30. I asked him to do a couple of things before he leaves.

Suddenly AF was in a bad mood. As usual, he wouldn't tell me why.

It wasn't until noon that I remembered what day it was. I called AF on his cell phone and told him "Happy Father's Day." I apologized for not remembering first thing. He was in a much better mood by this time. He said it was okay, but I still feel like a heel about it.

JF is still sick

Since Thursday night, JF has had a fever/cough thing going on, and it has been consistently worse at night. Yesterday, however, the fever started coming down. I stayed home with him today, and he's been fever-free all day today. He still has a dry cough, and his voice sounds a little hoarse. But I think he can go to daycare tomorrow.

I would like to think that the Rhino Echinacea drops that we've been giving him have shortened the duration of this illness. I think he's usually too sick for daycare for five or more days in a row. This time, he has missed only Friday and today. But I'm not sure. Which brings me to my next subject.

Are the supplements effective?

I was hoping that the diet changes and supplements recommended by Dana Laake would have immediate, unmistakable, positive results. We've been starting JF on them one by one, and we've started almost all of them:

• He has had no casein and a lot less gluten since May 24th. (For details, search for "daycare" in my previous post.)
• He started the ProBio Gold capsules on June 3rd.
• He started the mineral capsules on June 5th.
• He finished his antibiotics on June 8th.
• He started Calcium/Magnesium on June 8th.
• He switched from Gummy Vites to Yummi Bears on June 11th.
• He came down with a fever & started Rhino Echinacea on June 14th.
• He finished the ProBio Gold capsules a week after finishing the antibiotics, on June 15th.
• He started ProOmega last night.
• He started Cod Liver Oil tonight.

The only one that we haven't tried yet is the Garlic Willow Bark ear drops, which we will try the next time he has an ear infection. (Which reminds me, I need to buy an otoscope and start learning how to diagnose ear infections myself.)

I believe that I have seen improvements, but they are very subtle. I think JF has been communicating more creatively and expressively. I think he has been less spacey, clumsy, and aggressive, especially since starting the probiotics. And I think he is recovering from his current illness faster than normal, thanks to the echinacea drops. But it's all subtle. It could all be explained in other ways. (AF suggested that he's recovering faster only because he's getting older, starting to outgrow it.)

I was hoping the effects of these supplements would impress his PEP teacher, but his last day of PEP was last Wednesday. I was hoping they would impress my husband, and help me persuade him of the safety and effectiveness of biomedical treatments for autism. But the only unmistakable effect we've seen so far is that JF has lost four pounds.

As I understand it, a child with autism is a biochemical train wreck. No one single thing is going to solve all of JF's problems by itself. The trick is to find just the right combination of things.

Dana should have the results from the four tests that she recommended by now. As soon as she does, I will call to set up a phone consultation. Maybe the tests will allow us to fine-tune the dietary and supplement treatments, and then we'll see better results.

Also, at some point, I need to research each of the supplements, more than I already have. AF keeps asking me, "How long before these supplements take effect?" I don't really know. Maybe I'll have time to do this research this weekend.

Looking for a better vision therapy doctor

A couple of weeks ago, I wrote in this blog that Dr. Appelbaum recommended vision therapy for JF, and it would cost us $125 per session, two sessions per week, for some period of time between five months to two years. I believe that JF does need vision therapy, but I'm cringing at the thought of shelling out so much money. I can't even wrap my brain around that amount of money.

Dr. Appelbaum said that I should ask my employer for an upgrade to a healthcare plan that covers out-of-network doctors. He made it sound like this was possible. I asked my HR department, and they said to either wait until open enrollment or search for another doctor. I even asked the Department of Labor about this, and they said, "Plans are not required to offer coverage changes between open enrollment periods."

Dr. Appelbaum also made it sound like he had cornered the market on vision therapy. He said that he was one of only twelve doctors in the US who are board-certified in vision therapy. According to his website, the next nearest of these doctors is in New Jersey.

I asked the Rescue Angel that had given me so much guidance back in April about this. She mentioned Dr. Kaplan and Dr. Cohen. I Googled Dr. Kaplan, and found the Optometrists Network. This site has a doctor search that requires some contact info, but it promises to respect privacy, so I filled in the form. One of the results was Dr. Cohen, in Wheaton and Burtonsville. And it says that Dr. Cohen is board-certified in vision therapy!

Are they talking about two different boards? Or two different types of vision therapy? Is Dr. Appelbaum playing with semantics? In any case, he's not likely to have any more of my business.

I called Dr. Cohen's office and verified that he is accepting new patients and participates in my insurance. Then I made an appointment for next Monday.

Looking for a better DAN doctor

As I mentioned in my previous post, we were not impressed with the DAN doctor that we saw a week ago Friday. He was the only Maryland DAN pediatrician on my healthcare plan. I decided to expand our horizons.

On Saturday, I went back to the list of DAN doctors and printed out the list of doctors in Virginia. Then I searched for those doctors in my healthcare plan's list of in-network doctors. Only four pediatricians were in-network: McDonald, Madren, Van Dyke, and Mumper. McDonald is the closest at less than an hour away, Madren is three hours away, and Van Dyke and Mumper (in the same practice) are four hours away.

The name Mumper sounded familiar. I searched my e-mail messages. The Rescue Angel had recommended Dr. Mumper back in April. Back then, I had my hopes pinned on the Maryland DAN doctor, and wasn't even considering a four hour drive.

I Googled all four names. I found very little on Dr. Madren, a website for Dr. McDonald, and a heck of a lot about Dr. Mumper. Even though I had a recommendation for Dr. Mumper, and everything that I read about Dr. Mumper impressed me, I still wanted to avoid the four-hour trip. I was leaning toward Dr. McDonald. So I talked it over with AF last night. To my surprise, he seemed eager to visit another DAN doctor. (I guess he figures I will insist on JF having a DAN peditrician, and he really did not like the Maryland one at all.)

Today it took all morning to feed, medicate, and clothe my boy. By the time we were done, it was time for lunch. After lunch, while JF was happily riding his big-wheel tricycle around and around in the basement, I sat down to make some phone calls.

I called Dr. McDonald's office. They are not taking any new patients.

I called Dr. Mumper's office. They are taking new patients, on the autism side of the practice, but they are no longer participating in any insurance.

I called Dr. Madren's office. They take my insurance, and they are accepting new patients, but the earliest JF could be seen is September 10th. I reluctantly took that appointment.

This is where the title of this post comes from. I'm feeling hemmed in by everything that narrows our list of possible DAN doctors. There must be a better way!

Knoebel's

I mentioned about a month ago in this blog that my husband's family sometimes takes vacations in Vermont, sometimes at Knoebel's. When I heard that they were going to Vermont this summer, I assumed that it was in place of Knoebel's.

When we visited AF's brother's house on Memorial Day, on our way back from Wintergreen, one of my sisters-in-law asked me whether we were going to Knoebel's this summer.

Apparently, AF's family is doing both: Knoebel's in June and Vermont at the end of July. Normally, I would be excited about this. This time, I was dreading it, for two reasons: JF still isn't accustomed to the GFCF diet (or even completely on it yet), and AF is still skeptical about biomedical treatments for autism.

I imagined us walking through the amusement park with JF's cousins/aunts/uncles. I imagined them stopping at an ice cream or funnel cake stand. I would have to explain why JF and I can't have any. I imagined us dragging a wagon or cooler full of stuff that JF and I can eat & drink, because there is probably nothing safe for us at the park. I worry about what AF's siblings and in-laws think of me for putting JF on this diet, and for exploring other biomedical treatments for autism. When they ask about it, I can explain, but I'm not a very good public speaker. (That's why I like to write!) And when they don't ask, I worry about the silent judgements they are making, and what kind of problems that could cause down the road. I wouldn't worry about this so much if AF was on my side about biomedical treatments.

Shortly after Memorial Day, I told AF that he should go to Knoebel's with his siblings & inlaws by himself. I said, "I will probably be too busy at work in June to take time off anyway." JF can attend daycare while I'm at work. AF can play golf with his brother. That was the plan.

A few days ago, AF mentioned that all of his siblings and inlaws are clamoring for him to bring JF with him. They promised to watch JF for him so he can still play golf with his brother.

I started thinking that I would go with them. I started thinking that I should go, if only to make sure JF stayed on his diet. I started telling myself that I need a vacation, too.

Then, today, I realized that this Knoebel's trip starts on June 20th. This Thursday. I haven't asked my boss for any time off for this trip. And I've already taken today off for JF's illness. I can't go.

AF promises that there will be no infractions on JF's diet. I trust him. I just don't trust the circumstances.

I sent an e-mail message to the address on the Knoebel's site, asking about special diets. I guess the only other thing I can do is make sure AF's car is well-stocked with GFCF foods for the weekend.

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.

Very busy

I had to work all weekend for a deadline today. I will write a new post soon about JF's Friday appointment with the DAN doctor.

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.