Suffering from blog deprivation

Wow! I haven't written a post in over a month.

Part of the problem is that I now have a long commute, 45-90 minutes each way. I spend all of my time just surviving now.

The other part of the problem is my Internet connection at home. It took over a month for Verizon to give us a dial tone at home. Then it took me a week or so to call my Internet service provider and inform them of my move. That's when I learned that I can't have DSL at our new house. We can have dial-up or cable.

As I understand it, if we get cable, I would have to change my e-mail address and then maybe I'll be able to import all of my old messages into the new e-mail account. I want to avoid that if I can, so I wanted to give dial-up a chance. So, theoretically, we now have dial-up Internet access.

However, when I tried to use it, it wouldn't work because our phone line had the stutter sound to indicate that we have voice mail. And we couldn't check our voice mail. (Murphy's Law?)

I called Verizon a week ago and solved the voice mail problem, so now we should have dial-up access. I just haven't had time to try it. (I'm posting from work. Again.)

I'm worried that I've lost all of my readers with my long absence, but just in case, here is an update:

• The appointment with the counselor went well, I think. AF still had not read the Starving Brains book, so the counselor suggested that we put off scheduling the next visit until after he has read it. Her reasoning is that once he has started reading some of the things that I've been reading, then we can discuss it more easily. The problem is that I read fast and he seems to think that he has to keep up. AF promises to read the book, a little every night, but I'm not sure whether this is happening.
• We drove up to Rhode Island on Friday 9/7/07. It took over nine hours. JF called it "road trip island" and seemed to enjoy the long ride. We shed some tears at the service for AF's mom. JF played with a boy cousin who is two years older and has only one arm. The boy couldn't understand why JF wouldn't answer his questions or pay attention to him. (How do you explain autism to a six-year-old? I didn't bother to try.) We drove home on Sunday 9/9/07.
• On Monday 9/10/07, we drove down to Virginia Beach, to visit a new DAN doctor. We had been under the mistaken impression that it would be only three hours each way. It was five and a half. Doing this immediately after a long road-trip weekend was traumatic. However, AF actually accepted this DAN doctor enough to go along with his suggestions. We are planning to try a magnesium-B6 supplement, a melatonin supplement, a urine/stool test, and a blood test.
• On Monday 9/17/07, JF started attending a Howard County special education preschool program. (I hate the acronym that they use: RECC.) It's two and a half hours per day, five days a week, so he's getting less time than he did in Montgomery County (3 hrs x 5 days), but I told them I would wait and see how well he does.
• We settled on the new house on 9/21/07.
• JF is off of Lamotrigine (generic Lamictal, the anti-seizure medication). Back in July, the neurologist had said that we should gradually reduce the Lamotrigine. If we saw any seizures (mini or otherwise), we were to go back to the previous week's dose and that would be his dosage henceforth. We've reduced it to nothing and have not seen any seizures. (I'm worried that we're missing something, because he did have an abnormal EEG earlier this year.) We have an appointment with the neurologist sometime this month.
• I asked JF's new teachers to evaluate whether he needs occupational therapy. Wednesday 10/10/07 was the IEP meeting. Both AF and I attended. They decided that he is eligible. Yay! Accomplishment! (But I think they are squeezing the OT time into his existing 2.5 hr schedule.) At this meeting, I asked the teachers what they think of our plans to start giving JF a magnesium-B6 supplement and a melatonin supplement. His new teacher said that she's seen many students benefit from melatonin.
• I haven't had a chance to start job-hunting yet.
• AF bought a new toilet for the new house. Years ago, a guest at our old house had clogged the toilet. Apparently, this had been traumatic for him. So he has spent $200 on a toilet that was advertised as being able to flush an entire bucket of golf balls.

On that note, I think I should sign off. On my way home, I'm stopping at Barnes & Noble to spend a gift card that AF & JF gave me for my birthday. Wee!

We've moved!

The settlement on 8/24 went well! Yay!

We weren't sure that the house would sell until we were in the settlement meeting, and the title company representative came in the room announcing that the buyers were fully funded. Then we had two days to move. My family & AF's family helped, and it wasn't an organized move by a long shot, but we got all of our stuff out of the old house just in time. We're still trying to sort out the aftermath at the new house.

Buying the new house hasn't happened yet. AF and his brother are still making arrangements, but they hope to have a settlement by the 16th. Until then, we're technically renting from AF's brother. We had to create a contract showing that we're renting so that I could enroll JF in school. We're still waiting for a placement meeting, to figure out which program JF should attend.

JF came down with a fever soon after we moved, and it went as high as 105.3, but it actually blew over in only two days. He's attending a new daycare now and he apparently loves it as much as the old one. I think he misses the old house, daycare, and school because he keeps talking about the "blue house" but he doesn't seem to be traumatized by the sudden move. He's good at going with the flow, I guess.

We still don't have Internet access at home, so I'm posting this from work. Maybe the next time I post, it will be from home.

Upcoming events:

• Second appointment with the counselor will be this Thursday evening. (This was postponed from 8/30.)
• The memorial service for AF's mom is this Saturday in Rhode Island. We will drive up on Friday and drive back on Sunday (at least six hours each way).
• JF has an appointment with a DAN doctor on Monday in Virginia Beach (three hours each way). This is an appointment that I had made back in June, before AF said "no more" to the DAN stuff.

There are other things that I want to write about, if only just to vent frustrations, but I don't quite feel right about doing so at work. (I'm doing this on my own time, but anyone could walk up to my cubicle at any moment and look at my screen.)

Friday at 10 AM

The settlement date has, in fact, moved to Friday 8/24/07. However, this time, we have a time-slot! Our settlement is scheduled for 10:00 AM.

This is huge! Until now, the time has always been TBD. I've been told that they don't schedule a time until everything is approved and they are certain there will be no surprises. Even so, we're still doing a 2-day rent-back to avoid moving our stuff before settlement (which would be a risk).

Other updates:

• I think the fiber and/or the probiotics are starting to help me with what I assume is IBS. I've had two good days in a row!
• In case you are wondering, we have not tried the probiotics blind-test on JF yet, and we will not be able to try it until he gets sick enough for antibiotics. And I won't be able to post the results of our blind test until after he has been on antibiotics four times.
• I gave JF a full bath with a half-cup of epsom salts in the warm water (rather than just a foot bath). I put his nebulizer mask on him to deter him from drinking the bathwater, and that helped. (I still had to stop him from dipping his face, mask and all, in the water.) Based on just two uses of epsom salts on him, I think it makes him sleepy 12-36 hours later, reduces the effect of mosquito bites, and maybe improves his immunity. But I'm not sure.
• My computer is working again. Fixing it involved three separate calls to the number that came with our 3-year coverage, ~$90 at BestBuy, the purchase of an external drive housing, my work laptop's virus-scanning software, and my work laptop's CD-burning capability. I now have all of the files under My Documents backed up on CD, and I plan to back up files every time I do my finances, so if this ever happens again (God please forbid!), I will be able to fix it much more easily.
• I should clarify something I wrote in my previous post. For most students in Montgomery and Howard counties, school starts on Monday 8/27/07. However, for the Montgomery County PEP class starts on 9/4/07. I'm hoping Howard County also delays the start-date of their equivalent pre-school special education class. (I'll call tomorrow to find out.)
• This evening, AF bought a two-wheel bike with training wheels for JF. It seems like just yesterday, he was unsteadily trying out the big-wheel tricycle. Could he really be ready for a bicycle? Already? Apparently so. He hopped on and started pedalling as if he'd been doing it for years.

Insomnia, for many reasons

I woke up at 3:00 AM. After about a half-hour, I gave up trying to get back to sleep. I made myself some chamomile tea, ate some peanut butter, and started making a to-do list to get things off my mind. That woke me up even more.

So here I am, attempting to write about everything that I've been wanting to write about for the past few weeks:

• My body is not cooperating
• Epsom salt
• Settlement date
• Marriage counselor
• Computer failure
• JF's accomplishments

My body is not cooperating

Over a month ago, I decided to take myself off of the GFCF diet, but I have not been able to do so. Why not? Because I think I should reintroduce gluten and milk one at a time and watch for any reactions, just in case. After four months on the GFCF diet, I may have made myself lactose-intolerant. Also, I've read that many people have celiac disease (gluten intolerance) and don't even know it. So it would be silly of me to just dive back into the world of cheese cake, pizza, and buttered toast.

But what reactions would indicate a problem with gluten or milk? Diarrhea. And what have I been struggling with for the past month? Diarrhea. If I try gluten or milk now, I won't know if it causes a problem for me.

I went to the doctor's office on July 25th. I told the nurse practitioner about the GFCF diet, the stress in my life, and the diarrhea. She told me to give stool samples to the lab, suggested I increase my fiber & water intake, and said I might have irritable bowel syndrome. I also mentioned to the nurse that I had tried taking probiotics for a couple of days just to see if that would help. She said, "Well, you'd have to take it longer than that to see any effect." I think she said a week or two.

The lab results were negative (meaning they found no problems). I've been taking Metamucil, gradually increasing my dosage. I'm currently taking 2 capsules in the morning and 2 in the evening. I'm also taking probiotics (Kirkman's Pro-Bio Gold) once a day. I'm not sure whether these are helping, yet.

In the meantime, I am getting increasingly frustrated about having to stay on the GFCF diet. One co-worker brings in Dunkin doughnuts every Friday. I'm worried that he'll stop bringing them in just as I manage to get myself off the diet.

I've told a few friends about this frustration, and each one has asked, "But what if it's the diet that is causing your diarrhea?" The only way that the diet could be causing it (I think), is if it has caused a deficiency, such as a deficiency of fiber. I probably have been getting less fiber since I started the diet. And I'm working on that. Otherwise, I think the nurse practitioner would have told me to quit the diet.

The more I read about irritable bowel syndrome, the more I believe that's what my problem is. I've had symptoms of it for years (such as abdominal pains just before needing to use the bathroom), maybe even as far back as grade school. I never went to the doctor about it though, because it was never this bad. Maybe I've just never had this much stress in my life before!

Epsom salt

We finally did give JF an epsom salt foot-bath at bedtime (on Friday July 27th, I think), with a quarter-cup of espom salt (magnesium sulfate) in it. My hope was that (a) the magnesium would help calm him down and help him fall asleep at bedtime, and (b) the sulfate would help him to detoxify himself. (If I can't put JF on a diet to avoid toxins, let's help his body to deal with those toxins!)

That night, it was as difficult as usual to get JF to go to sleep. Maybe a quarter-cup wasn't enough? Maybe a foot-bath wasn't enough?

I think the sulfate may have helped, though. After that night, when JF got mosquito bites, they didn't develop into huge welts like they usually do, and they seemed to disappear faster. I think even AF noticed this, but he probably wouldn't agree with my theory that it was because of the epsom salts.

Also since that night, JF has gotten sick once, while we were in Vermont. This was right on schedule, based on his previous frequency, but it wasn't as bad. We were expecting three days of fever, ranging from 100 to 104, day and night. This was a lower fever (100-101), for only two days, and only at night!

Again, AF probably wouldn't agree with my theory that it was because of the epsom salts.

And we haven't tried the epsom salts again (on JF) since then. Maybe I can persuade AF to let us try it again, maybe with a half-cup in a full bath this time, sometime soon. And maybe we can deter JF from drinking the bathwater, by having him wear the mask from his nebulizer.

I have also given myself an epsom salts bath. It was relaxing. I've been taking showers rather than baths for so long, I had forgotten how nice it is to soak in hot water. Otherwise, I'm not sure if I noticed any beneficial effects.

The red bumps on my lap seem to be less pronounced these days, but I don't know whether to thank the sulfates or the probiotics for that.

Settlement date

Our house is still under contract, but the settlement date is a moving target. The original settlement date was yesterday (8/17/07). Now the settlement date is Wednesday (8/22/07). And we already have a heads-up that it might move to next Friday (8/24/07). This is all because the buyers have shaky financing and the mortgage lending industry is in upheaval right now.

As I understand it, the buyers have nowhere to live right now. I don't know whether they are living with friends, or living in a hotel, or what. Maybe they're camping in a park somewhere. This business is stressful enough for us; I can't imagine what it must be like for them.

Our contract also specifies a two-day rent-back after the settlement date. This is to protect us. We don't want to start moving our stuff until we're certain, and we won't be certain until it's a done deal. If settlement is on a Friday, that would make it easier for family members to help us move. If settlement is on a Wednesday, that would make it easier for us to contact utilities. I'm not sure which one I prefer. I just want to move!

On Monday, AF and I will take time off work to visit some daycares in the area where we want to move. We'll pick one, and pay the registration fee or whatever it takes to reserve a spot for JF, just in case our house sells. We're risking the money it takes to reserve the spot, but I'd rather have the peace of mind. We should have done this weeks ago. Better late than never!

Marriage counselor

AF and I saw a marriage counselor yesterday. She is a psychologist on my healthcare plan and she was recommended by our next-door neighbors. I wish we'd had more than an hour with her. It's difficult to explain the whole situation in just one hour.

I tried to explain the DAN approach and where I stand as far as wanting to try more biomedical stuff on JF. AF tried to explain where he stands. He complained about my persistence. He said I've been dismissive about his concerns. He said that in most things, I tend to consult with everybody about every detail, but with this DAN stuff, I started behaving differently. I had told people, "This is what we're going to do, and I need your support." (This is my attempt to describe how AF sees me, but I'm not sure how well I'm doing it.)

I think what AF doesn't realize is that I've always had this worrier/warrior dichotomy. When I don't have enough information, I worry. So I start gathering information, sometimes by asking friends and family what they think, sometimes by reading books, sometimes both. After I have gathered what I perceive as enough information, I take action. AF may be wondering why I didn't consult with friends and family about autism the way I usually do about many other things.

And that's a good question. Before I read the Starving Brains book, why didn't I ask friends and family about autism? I guess it was because I didn't think any of them knew much about autism, not even the sister-in-law who is a nurse. People don't tend to learn about autism until someone close to them is diagnosed with it. Nobody in my family and none of my friends had kids with autism. Except for my friends here in Blogger. And one of those friends recommended the Starving Brains book.

I didn't really get to explain the above two paragraphs during the counseling session. AF mentioned that a friend has suggested he read my blog (this blog). The counselor agreed with that suggestion. So maybe it doesn't matter that I didn't get to explain everything to him in the session. I've always felt more comfortable with writing rather than speaking anyway.

The counselor suggested that AF try to read what I've been reading. AF said that he started to read the Starving Brains book, but it had so many uncertain statements (maybe, probably, most, some) in it, he stopped reading it. The counselor suggested that he try again, but this time with the goal of explaining it to her at our next visit.

The counselor suggested that we try to agree ahead of time on parameters whenever we try something new on JF. We should try to track JF's behaviors (eye contact, cooperation, or whatever we're trying to change) so that we can see better when something is having a positive or negative effect. I thought this was a good idea, but I don't see how we can track JF's life in any more detail than we already are. We both work away from home and the spreadsheet that we're keeping takes enough time out of our lives as it is. In trying to explain this, I was afraid that I was about to cry and stopped talking. The counselor changed the subject. I never did get to explain this.

Maybe I will get a chance to explain at the next visit on Thursday 8/30.

Computer failure

After the counselor visit yesterday, I came home and tried to turn on our computer. Apparently, \Windows\System32\Config\System is missing or corrupt. Great. Just what I need right now!

We bought this computer on 6/1/05. (Wow, it's been over two years already?!) We also paid for a 3-year warranty, which comes with a phone number that we can call for technical assistance. We've used this number at least a few times in the past two years. It's great that I can call a number and someone will help me troubleshoot our computer. But it's always a very frustrating process and it's never quick. I didn't call last night because I don't know how long I'll be on the phone. I'm going to try to call today and I hope it doesn't eat too much of my day. Or week.

In case you're wondering, I'm using my work laptop to write this post. (Shh, don't tell!)

JF's accomplishments

I've been wanting to write about JF's accomplishments for a long time now. I think I should start including a section on his accomplishments in each post. However, it will be harder for me to remember them without access to our spreadsheets on the (currently) defunct computer. I will do the best I can from memory:

• JF can cut up soft meats (like chicken) with a knife and fork.
• He can drink from an open cup, but we let him do so only at the dining room table. Everywhere else, we give him a sippy cup.
• He is a lot neater about eating than he used to be. I still have to change his clothes after some meals, but only a few times a week, rather than after every meal. I can give him cereal without cringing!
• He is a little more thorough about brushing his teeth. (I still do it for him, too.)
• He's more reliable about telling us when he has a canker sore. Usually just before I brush his teeth.
• If I hold his underwear or pants for him, he steps into them and pulls them up. If I hand him a sock, he usually puts it on by himself and might need my help only to turn it around. If I put his shirt over his head, he pulls it down & shoves his arms through. He tries to slip his shoes on by himself, but he is more successful when I loosen the laces for him. He tries to loosen the laces by himself. He tries to tie the laces, crossing and recrossing them until they're completely twined.
• He can button buttons and snap snaps!
• He can take off any article of clothing by himself, except for his shirt. (He apparently doesn't have the arm strength and coordination to pull his arm out of his sleeve.)
• He cooperates better if I sing to him. In this way, he has been learning to sing Amazing Grace, Oh Say Can You See, Oh Beautiful, and Little Boxes.
• On Thursday evening, after I had started heating vegetables in the microwave as part of dinner, JF said, "Thank you Momma for making dinner." (The "Thank you Momma" part is a script, but I had never before heard him adding what he is thankful for!)
• Yesterday morning, when JF woke up, I told him Daddy's home. (AF had been in New York visiting his dad.) I told JF to go wake up Daddy. He ran to him and said, "Wake up, Daddy!" AF started tickling him and wrestling with him, as usual. I said to AF, "He missed you." JF said, "I missed you, Daddy." (Notice the pronoun switch! And the appended name!)

Oh, and school starts on Monday, August 27th. We still have no idea whether it will be in Montgomery County or Howard County, but at least we know the date. (It's the same in both counties.)

Rest in peace, NHF

My husband's mom died yesterday. Her decline began a year and a half ago, when she went to the doctor for a sore throat and difficulty breathing. It turned out to be a cancerous tumor in her throat. They removed it and started a treatment of chemo and radiation therapy. She's been bouncing back & forth between hospitals and nursing homes ever since.

Just over a week ago, my husband learned from his siblings that his mom was getting worse. She wasn't eating as much. She was tired of fighting for survival. They started giving her hospice care. As I understand it, this means they gave her drugs to make her more comfortable, drugs reserved for the terminally ill.

Yesterday, AF called me at work and said just two words: "She's gone." I knew what he meant.

I think the treatment (chemo & radiation) was worse than the disease.

AF drove up to New York this morning, to visit with his dad. He'll be back tomorrow evening.

I asked him whether he'd like to go to church this Sunday. I figured, it might be a comfort to him. He thanked me for the suggestion, but he said that the golf course has been his church these days.

There will be a memorial service, but I don't know when. I didn't really get to know her very well, but I want to do everything that I can to support my husband and his family while they grieve. I'm even thinking about singing Amazing Grace at the memorial service, but only if no-one else wants to do so.

Death kinda puts things into perspective, doesn't it? There were several other things I wanted to write about, but I think I'll save it up for next time, because I think NHF deserves a post all to herself.

Back from Vermont

We came back on Saturday, and I haven't had time to blog. I'm stealing time for this post.

Our vacation was great. We had fun playing in the lakes (Rescue and Pauline). We also enjoyed nearby Bromley, especially the Alpine Slide.

In the comments to my previous post, there were questions about the probiotics blind test. I'll do my best to answer them:

• We haven't done the test yet because JF hasn't needed any antibiotics yet. It might be months or years before I can report the results, but I will (if I can).
• The doctor didn't recommend any specific kind because we already had some from Dana Laake's recommendations: Kirkman's ProBio Gold. This is in capsule form, but we open the capsules and mix it into JF's morning beverage.

The house is under contract, but I'm trying to not get my hopes up that it will all work out.

AF and I still have not been able to work out our differences about biomedical treatments for JF's autism, and the stress is starting to disrupt other areas of our lives. So we're planning to see a counselor. We're hoping the counselor can help us work things out. I'm trying to keep in mind that the counselor will have suggestions for both of us (not just for my husband).

I'd like to write more, but I gotta finish getting ready for work.

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.

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.

Wintergreen

We're going to Wintergreen, Virginia this weekend. A neighbor couple has a house there, which they normally rent out, but they generously invited the three of us and two other neighbor couples to spend the weekend there. So I thought I should give a quick update.

After almost two weeks, Dana Laake (JF's nutritionist) has finally sent us her recommendations for JF: six pages of pure gold, in my book. We have also finally collected hair and urine samples for the test kits that she gave us:

• Urine for organic acid analysis
• Hair for mineral analysis
• Urine for porphyrin profiling
• Urine for casein/gluten peptide measurements

I mailed the hair sample yesterday, two of the urine samples this morning, and the last sample this evening. (I had to wait for it to freeze.)

Now that that's done, we can change JF's diet, starting with removal of all dairy. I need to call the daycare and his PEP teacher about this.

I need to go to Village Green Pharmacy and pick up what the nutritionist recommended:

• ProbBioGold
• Rx Formula I
• Cod Liver Oil
• Nordic Naturals Ultimate Omega
• Yummy Bears Multiple Vitamin Mineral
• Liquid Calcium Magnesium
• Rhino Echinacea Liquid
• Garlic Willow Bark Ear Drops

I've never had a grocery list like this before!

I've also sent a long e-mail message to many family members outlining what I've learned over the past few months about biomedical treatments for autism. A few responded with words of support. Some haven't responded yet. My dad responded more than anyone, with polite support, but also his opinion that, "this business about mercury in vaccines might be a paper tiger."

I pounced on that. (No pun intended.) I sent him some links to articles describing just how dangerous mercury in vaccines really is, including http://www.generationrescue.org/misinformation.html and http://www.autismwebsite.com/ari/dan/deth.htm. I don't fully understand the detailed chemistry article, but I thought he might understand it because he has a PhD in chemistry. (He was a university chemist over thirty years ago.) I hope the articles impress him.

So that was my quick update. Well, it was relatively quick.

In memory of my mom

This post is dedicated to my mom (1943-1993). This Monday will be the 14th anniversary of her death.

She was raised on a dairy farm in Pennsylvania. She milked cows in the morning before school, and once forgot to change her shoes in between.

She had four brothers and four sisters. They were descended from Irish immigrants.

She was very pious, and seriously considered becoming a nun.

She went to college. She met my dad at a beach party, where she was babysitting someone's children. My dad approached her and said, "Your children have the same beautiful blue eyes that you do."

She raised two sons and four daughters. The fourth daughter died as an infant of a liver problem. There were also miscarriages between the last daughter and the last son. She taught me how to change a diaper. When one of her children had a minor injury, she would rub it and say, "Beana beana basharoo." She taught me how to sing lullabies, including,

• "Tora lora lora"
• "When Irish eyes are smiling"
• "I gave my love a cherry without a stone"

For many years, she was a stay-at-home mom, tending the kids, the house, the laundry, and a vegetable garden, all without the benefit of the Internet, a microwave, a clothes dryer, or a telephone. She taught me how to hang clothes on the line, take them down, mend them, and fold them. She encouraged me to help her bake. She took me on long walks to visit neighbors.

Later, she worked as an assistant to elderly patients in their homes, in a hospital laundry department, in a newspaper advertising department, and in a grocery store. I eventually worked in the same grocery store, to earn money for college.

She was shy, focused on the needs of her family, and didn't have very many friends. One friend was a neighbor, NS.

Mom was almost 50 when she died in a car accident, on May 21, 1993. She and NS were on their way home from a grocery store. NS was driving Mom's car, and Mom was in the passenger seat. Two drivers were speeding along the highway, apparently drag-racing. One sped past. The other tried to avoid hitting my mom's car by swerving onto the shoulder, but NS had apparently moved to the shoulder at the same time.

Mom was pronounced dead at the scene. NS was in a coma for a few days before she died. We will never know exactly what happened that day.

I attended the last day of the trial with Dad. Both drivers had fled the scene, but one came back. The one who came back was the defendant. There was no evidence of alcohol. There was discussion about where on the road Mom's car was at the moment of impact, to determine whether any responsibility for the accident was on the part of NS.

The defendant's side of the story was this, as far as I can remember: He was a teacher, or was otherwise employed by the school. He had heard that a student was planning something, which involved driving out of state. He was worried, and followed that student, trying to catch up with him. When he caught up, they rolled down windows and had a conversation while speeding down the road. The older driver wanted the younger driver to pull over so they could talk. The younger driver refused to pull over. The older driver continued the high-speed conversation.

Hearing all of this, I was very angry. What could be so important that you must disregard the rules of the road and the safety of other drivers on that road? Why couldn't you just let the younger driver go? Why did my mom and her friend have to die?

After the trial was over, Dad approached the defendant and said, "For what it's worth, I forgive you." The man seemed grateful and gave Dad a hug. I'm proud of Dad for doing that.

Over the years, my anger has melted away. I still miss her dearly. I wish she could have attended my wedding. I missed her advice when I was pregnant and then when I was breastfeeding. I miss her now, as I consider what to do about my son's various illnesses. I still have dreams about her. The pain never goes away, but I've learned how to deal with it.

Recently, a friend of mine was involved in an accident where the other driver died. My friend had apparently been drinking. This accident brought back painful memories for me, but I wrote a post in support of my friend. I received some angry comments from friends/relatives of the deceased. I hope I responded appropriately.

On television, there is usually a good guy and a bad guy. It's black and white, with no gray in between. The bad guy is evil, through and through. The good guy is innocent of any wrong-doing. Both fictional programs and news programs portray people this way. The news about my friend's accident portrayed my friend as the bad guy, because he had killed someone by drinking and driving.

I believe that drunk driving is irresponsible and morally wrong, whether it results in an accident or not. I believe that the laws against it need to be stronger, to save more lives. But my friend is not evil, and I thought that someone should stand up in his support, to counter the news media. He is just like you and me, except that he made a deadly mistake. I'm hoping that he has learned from this mistake. I believe that he is paying for his mistake.

I hope that the friends and family of the man who died can someday find it in their hearts to forgive my friend.

House for sale, and other news

Today I will write about:

• House for sale
• Brain MRI
• Official diagnosis
• DAN! Nutritionist
• GFCF shopping
• Potty training progress

House for sale

Last Friday (5/4), we finally put our house on the market: www.107Chestnut.com. So now we have exchanged one source of stress in our lives for another. Instead of scrambling to prepare the house for the market, we are trying to live in the house without leaving any evidence that we live here. Every morning, we must de-clutter and arrange things just so. For example, in the bathrooms, we hide the towels that we're actually using and put up pretty, new ones. It irks me to hide such tokens of our existence, but I must swallow my pride.

We're both hoping the house will sell quickly, but for AF, it's even more important. He invested a lot of time and effort on this house over the past couple of months, for the express purpose of making it sell quickly. Our original goal was to sell the house (and buy the Jessup house from AF's brother) by April. We all know how well that worked out.

But now it's on the market. Now we cross our fingers and wait. (Do you know anyone who's looking for a house in the Gaithersburg area?)

Brain MRI

JF had his brain MRI on Tuesday (5/8). Typing this reminded me to check our phone for messages just now. The pediatrician had left a message this morning about the MRI. (Drum roll please.)

He looks normal...

except for a chronic sinus infection. (Is that all? And how can you tell it's chronic?) The doctor's message continued, saying, "That would explain his frequent illnesses. Let's put him on a 14-day course of Augmentin and take him to an ear/nose/throat doctor."

I am relieved to hear that JF's brain is normal, but I'm a little surprised. I had imagined that there would be something physically amiss in there, to represent the autism and staring spells.

I'm also surprised to get the results from JF's primary care doctor, rather than the neurologist who ordered the MRI. Will she call us separately, with her interpretation of the images? Will her interpretation be different than the pediatrician? Or is the pediatrician reading her interpretation of the images?

Yes, I worry too much. But this is my child's brain. And I don't trust doctors enough to just take the pediatrician's message at face value.

Official diagnosis

As you may know from my previous post, we took JF to see a developmental pediatrician on 4/26. We waited over a week to hear from her about our visit. Finally, I sent her office an e-mail message on Monday (5/7), asking for an official diagnosis. The office staff responded, saying that she is on vacation, but will answer my question by Wednesday (5/9). On Tuesday, she called me and said that she agrees with us that JF is on the autism spectrum. I asked whether she could be more specific. Which spectrum disorder does he have? She said something about PDD-NOS, but it sounded as if she didn't like that label. She said she would send us the letter that she had already sent to JF's primary pediatrician.

This diagnosis does not come as a shock to me. It gives me closure, of a sort. It's a tool, a magic word that will allow us to make progress in helping our son to reach his full potential. For now, as I see it, the benefit of having this diagnosis is mostly psychological, for us as his parents. I didn't start reading all of the books and web sites that I've read about autism, until I came to grips with the possible diagnosis.

My husband hasn't had time to do any reading about autism, yet. He's been very busy with the house. But now, now that the house is on the market, and now that we have the official diagnosis, maybe AF can start to explore resources with me. And maybe then we'll start to see more eye-to-eye about the biomedical treatments.

And later, maybe we'll need the diagnosis in order to fight for what he needs at school.

Nutritionist

One thing that the developmental pediatrician did for us was to recommend two nutritionists: Kelly Dorfman and Dana Laake. I could hardly restrain my glee when I found out that both of them are DAN! doctors!

However, neither one participates in insurance, and my insurance does not cover out-of-network doctors at all. So I asked for rates from both. The staff for Dana Laake seemed more responsive than that of Kelly Dorfman. The lady representing Dana quoted $180 for an hour and a half. So I made an appointment with her.

The staff faxed forms to me, and I filled them out as well as I could. I was impressed with the amount of information these forms were asking for. One page was a diet diary, which we faithfully filled in every day leading up to the appointment.

There are only a few things that I could complain about the appointment with Dana: She had so much to tell us, it was hard for us to get a word in edgewise. And at the end of the visit, I had to pay $360. We had stayed an extra hour, and she gave us test kits, so maybe it all works out.

In addition to the test kits, she also gave us a packet of information about nutrition. She asked us many questions and looked at every page of the forms I had filled out. Her advice started with removal of all dairy from his diet, and continued with a wide variety of supplements. She was typing as she gave us advice, apparently typing all of it into her computer. She promised to send us all of her suggestions in writing. I assumed she meant "send" in the electronic sense, so I gave her my home and work e-mail addresses.

She also tested JF for zinc deficiency on the spot, by giving him a taste of Zinc Tally. She said that it should taste awful if his zinc levels were high enough. When he tasted it, he briefly made a slight face, and went on with what he was doing. When offered more, he calmly said, "No." I take that to mean that he could taste it, but it wasn't as awful as it should have been.

She described the dangers of long-term use of Pulmicort, and gave me hope that his asthma might go away after we take him off dairy. She said that milk causes people to generate more mucus.

We told her about his frequent fevers, and how we sometimes alternate Motrin and Tylenol every four hours because we're afraid the fever will spike too high. She said that from now on, instead of Motrin or Tylenol, at the first sign of illness, we should give him a supplement. (I think she said zinc and echinacea.)

At one point, AF mentioned that I've been frightening him with talk about government conspiracy theories. I clarified that I had been talking about the CDC being unwilling to admit the possible connection between mercury/vaccines and autism, and I mentioned the Simpsonwood cover-up. Dana responded by saying that a CDC official recently made a statement about the possible connection. (I need to look this up.)

She gave us three test kits and promised to send us a fourth in the mail. She wrote the cost of each one (because it's better to pay up front and try to get reimbursed by insurance) and prioritized them with numbers, in case we couldn't afford to pay for all four. She said that we should collect the samples from JF before we make any changes in his diet.

After we left, I asked AF what he thought of her. I was worried that he would be unwilling to follow her advice, because of his skepticism about biomedical treatments for autism. He said, "I guess we can't trust the government to take care of us. We have to take care of ourselves." I breathed a big sigh of relief. We still don't see eye-to-eye on the DAN stuff, but we're getting closer.

GFCF shopping

I have been reading Karyn Seroussi's Unravelling the Mystery of Autism and Lisa Lewis' Special Diets for Special Kids. Both of these authors recommended DariFree, a potato-based milk substitute. One of these authors, I can't remember which, said that when you order DariFree online and in bulk, the price is equivalent to cow's milk, because it is in powdered form. I was intrigued. I looked at receipts going back a few months and I looked at prices of DariFree on www.vancesfoods.com. I calculated the costs of various beverages, per quart:

• Cow's milk from Giant = ~$0.75
• Almond milk from Safeway = $2.42 - 3.35 (depending on brand & flavor)
• DariFree from My Organic Market = ~$1.60 - $1.86 (depending on flavor)
• DariFree (original flavor) canisters online = ~$1.50
• DariFree (original flavor) bulk box online = ~$1.20

So, in my area at least, I can't get DariFree at a price comparable to cow's milk. But it's cheaper than almond milk!

I'm hoping that ordering DariFree online will save me from having to drive to My Organic Market in Rockville, which is apparently the only store in my area that has it. (It's only a few miles from where I work, but traffic always sucks when it's convenient for me to go to that store.) So I ordered 6 cartons of DariFree from www.vancesfoods.com. (After I had done my calculations above, and decided to buy the DariFree online, then I found out that there was a $13.09 shipping charge! This adds $0.36 to the cost of each quart!)

Today after work, I finally returned to Whole Foods. I was able to find a whole cart-full of GFCF groceries this time. I think when I visited the first time, I was so intimidated by the concept of finding GFCF stuff, that I didn't really try. This time, I've had more experience, and I had a gluten-free product list and a dairy-free product list printed from www.wholefoods.com. Having to look for unfamiliar products in an unfamiliar store, combined with checking for those products on two lists, made it quite an ordeal. But I did it.

Of the many things I bought were GFCF cake mix and frosting mix, because my little boy will be four years old this month!

Potty training progress

Since the beginning of the year, JF has been pooping on the potty about once a month. Suddenly, at the end of April, he pooped on the potty two days in a row. I started making a note of it in his medication log. Then, he took a break for about a week.

This week, from Sunday 5/6 to today, JF has pooped on the potty six days in a row!

Not only that, but he suddenly seems to understand that he should use the potty ring for when he needs to sit and poop, and that he should lift the seat up when he needs to stand and pee. This was a difficult concept for him, just a few weeks ago.

I wish I had been keeping a detailed log of what he is eating and drinking all along. I'm tempted to say that his successes coincided with decreases in dairy, but I'm not really sure. Oh, well. I'm just happy that I've had a break from cleaning poopy underwear.