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!"

IEP meeting

I have the impression that many IEP meetings are frustrating and painful experiences. Well, maybe I'm doing something wrong, because the IEP meeting that I attended today was a relatively pleasant break for me, compared to all of my pain and frustrations at work!

There were only four attendees: myself, JF's teacher, JF's speech teacher, and the chair of the meeting from Program Support. As I may have mentioned before, I really like JF's teacher. I've met both of the other two women before, and haven't had any problems with them.

During this meeting, I raised a few concerns:

• Number of hours per week
• ESY
• Pre-kindergarten

And then there were miscellaneous discussions, too.

Number of hours per week

I was worried about the number of hours of instruction for JF. I asked whether it could be increased from 15 hours per week to 20. They asked why. I told them about the recommendation in the DAN! website for 20-40 hours of ABA per week. The first response was that JF doesn't need intense ABA therapy. He does well with some ABA, but if that was his only therapy, he would actually make less progress than he is making now. They said ABA isn't ideal for higher-functioning kids like JF. I think they also said that ABA would reduce his ability to generalize what he is learning. They suggested that I look into Applied Verbal Behavior (AVB). They also mentioned something about a Pre-K Autism program.

I said, "I'm not worried so much about what type of therapy as I am about the amount of time." They asked why. I said, "Because more is better." They said that they don't have a program for kids like JF with 20 hours per week. The program that he's in, PEP-INC, has the longest amount of time per week. I asked whether it should be about what resources the county has, or what JF needs. They agreed that it should be about what JF needs.

Then JF's teacher made the point that having JF in daycare with his (neurotypical) peers is crucial. One of his strengths is his tendency to imitate what he sees and hears, and a large part of his week should be spent with his peers, so he can observe how they talk, behave, and interact. This was persuasive for me, because the more time he spends in a preschool program, the less time he would have with neurotypical peers.

His teacher continued, asking whether we know about the autism waiver. We don't. She explained that it is money (from the state) to explore outside therapies. However, there is a long waiting list, and higher-functioning kids are less likely to get it.

ESY

I wanted JF to receive ESY services. Fortunately, the team determined that he will. The reasons included:

• Presence of emerging skills or breakthrough opportunities: He "is beginning to have more spontaneous speech and decreased echolalia. The team is concerned that he might lose those skills over the summer break."
• Special circumstances that require ESY: He "has missed a lot of school due to illness." (For each of the past two illnesses, JF lost a week from school. Someone at the meeting mentioned that he has missed about a month, total.)

The ESY dates are 7/2/07-8/3/07. Right away, I asked whether there is any wiggle room in these dates, because the last week of these dates conflict with our family vacation in Vermont. The answer was, "There is no wiggle room, but you should go ahead with your vacation plans anyway. It will be good for him to be with his family on vacation, even if it means that he'll miss a week of ESY."

I asked whether this decision to give JF ESY services would transfer to Howard County when we move. (I mentioned that we are still planning to move, but we don't know when.) They said yes, with the new state IEP form, any other county in Maryland should honor this decision. I speculated that Howard County might not have the same dates for ESY. JF's teacher said that it's usually in July, because that gives the school time to hire and train new teachers before the new school year starts.

Pre-kindergarten

I asked whether JF should be enrolled in pre-K in the fall. (He will turn four in May.) JF's teacher said that the Montgomery County pre-K program is a special program under Head-Start, with enrollment based on income. The goal of the program is to help the less-advantaged kids. It's five days per week, but only 2.5 hours per day. There are about 20 kids in each class, with one teacher and one aide. The PEP-INC class is a much smaller ratio, and JF still needs that smaller ratio.

On the other hand, they said he might attend a normal class by kindergarten!

I don't remember how they worded this, but it made my heart skip a beat. I pictured JF as a completely "normal" five-year-old, playing and conversing with his classmates. It wasn't until I typed the above statement just now that I realized, they weren't making any promises about JF outgrowing his developmental delay. They were merely talking about including him in a regular kindergarten class. Oh, well. Even that is progress.

Miscellaneous discussions

JF seems to be learning a lot of Spanish. He apparently likes to say, "No mas, " to one of his PEP classmates.

JF has days where he makes progress on a skill, but then one day he'll seem to forget the skill. His teacher called these his "ups and downs." I asked whether this was normal. She said, "No, but we have to address it."

JF's speech teacher mentioned that he sometimes seems afraid to be wrong. He knows the answer, but hesitates about answering. She suggested, when we're working with him at home, if he gets something wrong, we should respond gently, as in "Yes, it looks like a chicken, but it's a turkey." I told her that we generally do respond that way to JF's mistakes at home, but I admitted that I might be responding too strongly when he makes a mistake getting dressed. I speculated that this might be where he's getting his fear of making mistakes. The speech teacher suggested a book by Boynton called Oops. And we should let him see us making mistakes. She also suggested, when we're waiting for him to answer a question, sometimes it helps to look at him expectantly.

I mentioned that JF bit my chin last night and then laughed at me when I screamed in pain. Both teachers offered a series of suggestions that I've probably mentioned here before. Once we were past that, I reminded JF's teacher how she had responded to JF once during a home visit, when he spat on the table. I told her that AF and I still haven't figured out how to duplicate that tone of voice. She has a knack for making him nearly cry when he's done something bad. When we try it, he just laughs at us. She said we should use a deep, stern voice, authoritative without being angry. The speech teacher said sometimes it helps to get down on the child's level first. She said this suggestion came from "the Nanny book" (related to the Super Nanny show on TV).

So that was JF's IEP meeting. I really don't know whether I did a good job of getting my son what he needs. Maybe I'll be wiser and more confident about these things the next time.

Meanwhile, AF took JF to Dr. Buck, the surgeon who repaired JF's hernia, for his follow-up appointment at 4:00. AF called me a short time ago complaining about the long drive to get there, and the long wait to see the doctor. And after all that, the doctor looked at JF briefly and said he's fine. Of course, he was relieved that JF is fine, but annoyed that it wasn't a big deal to the doctor.

Then, AF took JF to the pediatrician's office. JF was out sick all last week, with a fever, runny/stuffy nose, and a cough. The fever went down by Friday, but the congestion and cough continued throughout the weekend. On Saturday night, his cough had started to sound like asthma, so we gave him albuterol. It seemed to help him enough so that he could sleep. We gave him albuterol again last night, too. So today, AF called the pediatrician and asked for an appointment sometime today after the 4:00 appointment. The best they could do was 7:15 PM.

AF just called me with the results of that visit: bronchitis and antibiotics. Go figure.