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.