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.