Short post

We're going to Vermont for a week-long vacation this Saturday.

AF agreed that we could give JF epsom salt foot-baths before bed to try to calm him down. (JF has had insomnia, difficulty falling asleep at bedtime for months.) But when he bought a carton of epsom salts, the age-specific directions frightened him. So now I'm waiting for him to call the pediatrician to make sure it's okay to use on a 4-year-old. I'm frustrated because I can't find anything on the Internet that says epsom salt baths have been proven safe for children. It's like trying to find an article on the safety of H2O!

I finally went to the doctor yesterday for myself after two weeks of diarrhea. (You don't mind if talk about diarrhea, do you?) The nurse-practitioner that I saw is a very nice lady who actually listens to me, and anticipates my concerns. She also mentioned that her son has Asperger's. I wanted to ask her more about him, but I didn't want to be nosy. Anyway, she said I might have irritable bowel syndrome. She suggested I get more fiber and water. (I probably have been skimping on the fiber since I started the GFCF diet.) She also had me give some stool samples to the lab.

We took JF to a follow-up visit with the neurologist on Tuesday. She (the neurologist) said we should gradually reduce the Lamotrigine (generic Lamictal) until we start seeing seizures again. This will tell us what JF's dosage should be. During this visit, I tried to persuade the doctor that his epilepsy, autism, allergies, asthma, and frequent illnesses are caused by nutritional deficiencies. Her response was to refer us to a gastroenterologist. Better than nothing, I guess. But the best part of the visit was the doctor's suggestion that we conduct our own blind trial to prove the effectiveness of probiotics on JF. Two out of the next four times that JF is on antibiotics, AF will give JF probiotics without telling me which two times he's doing it. It will be my job to report to AF when I see the negative effects of the antibiotics. Isn't that a great idea?

An update

I've been very busy lately. I'm the rope in a tug-o-war between work and home. Tonight, I have only a half-hour before I must go to bed. So I'll try to keep it brief.

• Cow's milk
• New fever
• Letting go of some things

Cow's milk

We gave JF cow's milk on the Wednesday 7/4/07, as a test. I thought I noticed some new congestion and some new spaceyness. I think he also had diarrhea. However, AF didn't see the spaceyness, and he thought the congestion & diarrhea could have been a continuation of JF's previous illness (bronchitis).

So JF went back to a dairy-free diet for a few days. By Sunday 7/8/07, JF was on Lactaid (lactose-free cow's milk) and he's been on Lactaid ever since. By this point, I have really started to second-guess myself. (Maybe this is the real reason I haven't written a post in a while.) Right now, I honestly can't remember whether I noticed any change in JF after he started Lactaid. But maybe that's because I stopped looking.

There are things that I can fight, and there are things that I can't. AF's refusal to consider a dietary change for JF is starting to feel like a brick wall. So it really doesn't matter what symptoms I see when JF is on dairy. It galls me to have to back down on this, but maybe we can make progress with biomedical treatments for autism in other ways.

AF was planning to call the pediatrician to ask a question, so I suggested that he also ask about going back to regular cow's milk. JF has been diary-free for over a month, and when we tried to re-introduce cow's milk, I saw diarrhea. When we tried Lactaid instead, we didn't see diarrhea. So my question for the doctor was, how do we get him readjusted to regular cow's milk? I was hoping for some kind of schedule, like one ounce per day for a week, then two ounces a day for a week, and so on. When AF finally managed to talk to the pediatrician, AF apparently didn't understand my question enough to ask it. So he suggested that we just try it again when JF is feeling well.

New fever

On Friday night, JF came down with a fever. (It figures, it was Friday the 13th.)

I didn't even bother arguing that this fever might have been caused by a sensitivity to the casein in the Lactaid. There have been too many other variables at play here. We ran out of Zyrtec on Sunday 7/8/07. (I had ordered more at the end of June, but there's been a snafu. We're still trying to resolve this snafu.) We've been using Claritin instead, but by Wednesday 7/11/07, he seemed pale to me, with dark-rimmed eyes, and he was rubbing his eyes and nose.

We've done everything that the allergist recommended (using hot water to wash his bedding each week, removing all stuffed animals, and so on), but it didn't seem to make any difference. He still needs Zyrtec every night! There must be something more going on in his body than just the cat, dust, mold, tree allergies detected with the skin test last August.

Another variable is his exposure to kids (and their germs) at daycare and his summer ESY PEP class. Even before he started attending daycare at age 2 1/2, he was getting sick once a month. Since starting daycare, it's more like once every two weeks. Considering this frequency, this fever arrived right on time.

Here's a summary of this illness:

• On Friday night, JF's temp was 101.5.
• Saturday: 100.2-104.4, lethargy, red ears, red cheeks, nasal congestion, no appetite.
• Sunday: ~100-104.7, puking yellow mucus, still no appetite. (The ~100 means we just felt his forehead & gave him fever-reducer without actually taking a temperature.)
• Monday: ~100-102.1, diarrhea, occasionally sweating off his fever without meds.
• Tuesday: 97.4-98.6, still had a runny, stuffy nose & itchy, dark-rimmed eyes.
• Wednesday: back to daycare & school.

JF fought off this fever in three days (Friday night to Monday night), without echinacea. So that kills my theory that the echinacea had helped him beat his last fever faster than usual.

Letting go of some things

I have to wrap up this post. I've been writing for an hour so far, a half-hour longer than I intended. I intended to write about some of JF's recent accomplishments, but I'll save them for another day.

In my exploration of the biomedical approach to autism, a lot of people have given me their support, here in Blogger, by phone, by e-mail, and in person. I really appreciate it. But the one person whose support I want (need?) the most, isn't cooperating. This is really starting to wear me out.

Here's my analogy: The biomedical approach is a household electrical appliance (literally, an application of ideas) and my husband is an electrical outlet. I can't quite get the power cord to the outlet. Almost, but not quite. I keep looking for extension cords, but I can't find any that will fit.

When my dad joined AA several years ago, he introduced me to the Serenity Prayer. It divides everything into two categories: The things I can and should change and the things I can't or shouldn't change. (It's the wisdom part that baffles me.)

So I thought it might help for me to make a list of the things that I can't or shouldn't change and a list of the things that I can and should change, so that I can focus more on the latter.

I can't or shouldn't:

• Try to find someone to change AF's mind.
• Try to make AF trust people he doesn't trust.
• Try to make AF see the patterns that he does not want to see.
• Consider any dietary change for JF.
• Consider any chelation therapy for JF.

I can and should:

• Continue researching biomedical treatments for autism.
• Propose therapies for JF (other than dietary changes or chelation).
• Back up my proposals with literature from sources that AF trusts.
• Wait patiently while AF considers them.

I might add more as I think of them.

Recovering from a triple blow

I haven't been feeling much like a warrior these days. Three things have hit me in one week:

• My own realization that Dana Laake's recommendations seem haphazard compared to the Yasko approach. (See "Yasko" in my 6/30 post.)
• The consequences of sending Dana an overly long list of questions. (See "Rebuked" in my 6/30 post.)
• My husband suddenly refusing to consider any part of the DAN approach.

However, I am slowly recovering.

Back in '99, when my boss at the time gave me a choice between quitting or being fired, he told me that I'm tenacious. You bet I am. I don't like to give up on any challenge until I have run out of ideas. And that rarely happens.

Today we will give JF some cow's milk as a dietary challenge and see what happens over the course of a day. If nothing happens, my husband will insist that we give up the dairy-free diet. I'm worried that my husband won't see an effect that I see. I'm worried that I don't know enough about the potential physical and behavioral effects of cow's milk to adequately fight this right now.

Then, if and when JF is back on cow's milk, my husband will insist that we give up the probiotics that Dana Laake recommended and use yogurt instead. I know that yogurt, by definition, has at least two probiotics in it. (In Wikipedia's Yoghurt article, search for "probiotics".) Most yogurts have maybe one or two additional probiotics. The Kirkman ProBio Gold that we've been giving to JF has many more types of probiotics and at higher amounts. I believe that antibiotics cause or aggravate problems for JF and I believe the ProBio Gold has helped JF to recover from or avoid these problems. My husband doesn't agree on either point.

Most of my research so far has been from sources that my husband doesn't trust (such as DAN and Generation Rescue). I need to start researching each aspect of the DAN approach, using sources like Medline Plus, Medscape, PubMed, and Google Scholar.

I also concede that I have been somewhat daring about trying things on JF. I could argue that it comes from trusting Dana, and trusting her is no different than trusting our pediatrician, neurologist, or allergist. But perhaps we trust all of our doctors too much. We need to educate ourselves about the things that our doctors are recommending and we need to thoroughly question those recommendations.

My husband wants to use only behavioral therapies on our son. He talks about erring on the side of caution, but either way, we're taking a risk. If we don't try the biomedical approach, we're taking the risk that behavioral therapies aren't enough. If we try it, we're taking the risk that JF will miss out on social interactions because he can't eat the same foods, will lose weight from the dietary restrictions, or will otherwise suffer from something going wrong.

Pizza is a big issue here. Pizza is everywhere, and it breaks my husband's heart to remove pizza from JF's diet. I'm not kidding. He honestly believes that JF missing out on eating pizza with his peers is worse than any effect of the casein and gluten in the pizza. I've tried telling him that we can get or make a GFCF pizza, and bring it with us whenever JF goes to a pizza party, but this statement didn't seem to make any difference. I need to start looking for GFCF pizza in my local stores.

As I said to MWAM in the comments of my previous post, I know that my husband isn't fighting this just to piss me off. He is doing this because he loves our son as much as I do. We've had a lot of tension in the house lately because of this disagreement, but we still love each other. I hope my persistence doesn't sabotage that.

Backing off

My husband has decided we're not doing any of this DAN stuff any more. We might keep JF on a dairy-free diet for the sake of his asthma, and we might keep him on the multi-vitamin, the probiotics, and the fish oils. But everything else is just too much for him.

I could argue with him about it, but I think that would just make things worse. It seems everything I do to support the biomedical approach just backfires. I'm just going to be grateful he's willing to consider the dairy-free diet and a few supplements.

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.