Thursday, July 19, 2007

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.

5 comments:

WarriorMom said...

The time-stamps on my posts are never right. I started this post at 8:30, not 7:30. And I know I have the right time-zone selected in my settings.

mjsuperfan said...

I think the serenity prayer is a good one for moms of kids with autism. My problem is often the part about "knowing the difference" between what I can or can't change.

There are probably lots of biomedical things your husband would be okay with. I ordered some cod liver oil (omega 3's are supposed to be helpful), which people have been giving to kids forever. I don't know how your husband would feel about DMG (it's made from beets), but we think it might be helping one of our boys with speaking.

Hang in there!

WarriorMom said...

The part about knowing the difference is hard for me, too.

And you're right, there are some biomedical things that AF would be okay with. In fact, there are some that we are still doing, including cod liver oil.

In all, JF is still taking:
* Yummi Bears multiple vitamin mineral
* Alternating fish oils (Nordic Naturals ProOmega one day and Xymogen Cod Liver Oil the next)
* A compounded formula (biotin, zinc, TMG, CoQ10, Quercetin)
* Kirkman's ProBio Gold probiotics, during & 1 week after antibiotics.

I have a feeling that AF might pull the plug on any of these, at any point.

Of all of the things that Dana Laake prescribed, we've dropped:
* The dairy-free diet
* Calcium magnesium citrate
* Echinacea drops
* Garlic willow bark ear drops (we never had an opportunity to try it)

Dana also recommended magnesium sulfate (epsom salts) cream, and AF is considering whether we could try it.

I guess I should be grateful that we're still doing some of these. But I have a feeling that this would have been just the tip of the iceberg as far as potentially good therapies for JF.

Mom without a manual said...

I am sorry for all your stress.

I don't know what to say other than hang in there. And know that anything you can do is better than doing nothing!!!!

WarriorMom said...

Thank you, MWAM.