Curiouser and Curiouser

When you are treating a child biomedically, and at the same time trying other modalities such at therapeutic listening and trying to distinguish what is working and what is not,( i.e. where in the heck the strange behaviors are coming from) you begin to feel like you're talking to these guys all of the time. If THIS is the advising committee in my head, I'm in trouble. I'm afraid this is exactly what it feels like, folks. That's me at the head of the table, by the way. The one filtering and sorting through all of the various opinions of the voices in my head. Can you see the concentration on my face, thinking, "What the heck IS this..."

A Mad Tea Party, indeed. Time to wake up the doormouse and have him tell us a story.

I had posted before about testing Liberty for PANDAS which involves basically having Strep titers drawn. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. Geez Louise. That's enough to scare anybody. Apparently, some kids get some odd symptoms right after a Strep infection. They develop things like tics and obsessive behavior, apparently from elevated Strep antibodies.

On our last appointment, I mentioned to Dr. Bock that Liberty had developed what I felt was an obsession with the seams in his shirts, and the seams in anyone else's clothing. He also had a high pitched barky sound he began to make on occasion, and then recently he began covering his ears (at no sound detectable), extreme sensitivity to light and some new eye blinking which could be seen as a tic. Also, I have posted before about Lib (and me) not sleeping through the night. If you go to the website on PANDAS you will find many of these behaviors including "sleep disturbance" could fit this syndrome.

Oh yes, but today I am reminded once again, that things are not always what they seem!

First of all, after finally getting a hold of a human being at the doctor's office and wrangling with the lab here to fax the results again, I got an answer on the PANDAS - the second part of the test we were waiting for called the "DNASE" was negative!

Meanwhile, Liberty has been in a Therapeutic Listening program since last March. There are a few different kinds of programs out there, this one is through a company called Vital Links. Basically, it involves putting on a special pair of headphones and listening to CDs tailored to the child's needs and all of this being overseen by an occupational therapist. In this particular program, Liberty listens to a CD for 2 weeks (twice a day for 30 mins) for 5-7 days, then switches to another CD for another 2 weeks, and alternates for a period of 12 weeks. Then we stop for two weeks and evaluate any progress or lack of it. The CDs they use in the program are incredible. I mean, who knew you could tailor sound for things like body coordination and social skills? Some of the CDs are Mozart, some are jazzy, some are nature sounds and they are all done in a special recording studio.

Anyway, Therapeutic Listening helps a child with auditory processing problems as well as visual processing problems and I always felt APD was a big factor with Liberty.

Having said all of that, I never dreamed that his symptoms were probably being produced by his Therapeutic Listening. When I saw him begin to cover his ears, I decided to stop the listening program for a little while until I figured out what was going on. Apparently, that was not the right thing to do. It did eventually occur to me that something could be going on with the Therapeutic Listening because the last time we took a break, he developed toe walking and spinning, but when he began again, the symptoms promptly went away and his therapists and teachers remarked on how well he was doing.

Now, I had put in a call to my OT but could never get her to return my call. So in the past two weeks of trying to phone her and get her input, I was spinning in circles with the new possible PANDAS diagnosis, and also wondering if the Diflucan which we are still on might be causing something. Or, if perhaps there was something in his 10 supplements that was the culprit. So, I stopped those and began them over again slowly. Then I wondered if stopping those suddenly did something to mess him up. See where the mind goes? Round and round in a circle game.

When I finally got a hold of my OT, do you know what she said? She said she "spilled a Coke on my phone number" and forgot to call me. Now, she has our records on file. Do you think she might have looked up my phone number? Asked the secretary? We went to see her in the office almost every day last summer. I was left speechless. I cannot imagine saying that to anyone!

When I described to her what was happening to Liberty, including the fiddling with his seams, she casually said, "Oh yes, that is quite common. Remember me telling you about the tactile problems that can develop?" No, I really did not log that into my memory if she did tell me. She said that, many times these symptoms mean that what we are doing is working. She said that he is being bombarded with sensory stimulation. She said that a newborn baby hears sounds all at once and has to learn to differentiate his mother's voice and other sounds that are important and let the others fade to the background. She said Lib is covering his ears because he has this new sensitivity because he is probably processing like he has not done before. The air conditioning that I tune out could be suddenly deafening to him, according to her. She told me to try lowering my voice, changing the bass and treble on the tv, etc. She is great at explaining it all to me but getting in touch with her, for some reason, is difficult. There is only one other person in town qualified to administer the program and she has a waiting list three miles long.

Then I thought, perhaps his CDs helped his body awareness and that is why he suddenly is potty training. His therapists thinks so. Oh did I not shout that one out? LIB IS POTTY TRAINING HIMSELF! One day, he used the potty at school repeatedly and then he did at home. I had him in underwear all weekend, traveling here and there in the car, with only one or two accidents at home. It really is phenomenal. I have to look back in my notes...was it only one week or so ago? Now, he is doing this like he's done it forever.

But, wait, how much of these symptoms and/or progress can be attributed to the antifungal, Diflucan - look at what phenomenal success Jenny McCarthy had with her son and getting rid of yeast. Look at the unbelievable yeast die-off Liberty went through.

Also, there is the MB-12 shots we restarted at the correct dose.

Can anyone really know how it's all playing out?

This is tough work. I feel like a detective and I truly understand now why the logo for autism is a puzzle piece. What is so exhausting about it is, you have to really scrutinize and take notes. When the doctor asks you if you see a correlation between sleeping through the night and the antibiotics his pediatrician just put him on for a blossoming ear infection, you have to be able to say yes or no. I mean, I have pretty great intuition, but not when I'm exhausted. Notes help.

I also now have developed very painful TMJ. Not suprising. A little stored anger and tension.

This afternoon, I spoke with the nurse today from Dr. Bock's office. She told me that oftentimes, covering the ears and being suddenly sensitive to light and sound, etc. can mean that detoxification from metals is happening. Again, one more possibility thrown into the ring.

So, it could be ANYTHING.

Perhaps I need to get a psychic involved in the works, add her to the TEAM of Super Sleuths.

No, wait, they are more expensive than the DAN! doctors.