Visit with Dr. Bauman & John's Diagnosis

On Tuesday, John, Bill and I visited Dr. Margaret Bauman, who is an Autistic Specialist in Child Neurology out of Massachusetts General Hospital. She works with Children's Services at Casa Colina and travels every quarter to visit. We had an hour-and-a-half appointment with her for a second opinion/diagnosis and next steps.

First of all, I want to say that it was a pleasure to talk to her. She does research into the causes of autism, as well as treating patients with Autism and has a good understanding of the development of children. She suggested so many things and gave us such a good analysis of the situation.

To see Dr. Bauman, an exetensive packet of information must be supplied that includes birth records, hospital records, any testing scores, analysis, or assesments, etc. She also met with John's teachers at Casa Colina and spoke to them about their observations. When Bill, John and I arrived, we went into an office with lots of toys to keep John occupied. (6 months ago, they wouldn't have kept his attention, but today, John was able to play most of the time without being re-directed. During the last half hour, he became more 'needy' of my attention and even started to do things like climb on the table and laugh after I told him to stop)

Dr. Bauman talked to Bill and I a long time, asking us questions about his development, behaviors, things we've noticed, therapies we've done, improvements we've made, etc. After our discussion, she gave us her assesment of John.

She believes that John has PDD-NOS. To understand this, let me break it down.

PDD is the category, which is Pervasive Developmental Disorder.
There are 5 disorders that fall under the PDD category. They include Autism, Asperger's, Rhett Syndrome, fragile X syndrome, and PDD-NOS.

In simple terms, the NOS, means Not Otherwise Specified, meaning that many symptoms are present that resemble those other 4 disorders, but not enough to receive a diagnosis.
Now, to make it clear, PDD is the autistic SPECTRUM, so all 5 of these diagnosis are on the spectrum, but to a varying degree, with PDD-NOS being the one that shows the least amount of symptoms.

There are a few things that she pointed out that are a cause for concern. A few that we talked about are:
- his lack of interest in people, limited eye contact
- his play skills (allows others to set the framework of play and then he 'learns' play, rather than naturally picks it up)
- his irregular sleep patterns
- sensory issues
- eating issues

In moving forward, she would like to find out WHY John is showing these symptoms and if other things are wrong. She is sending us to 3 other specialists to begin with.

1. a developmental optomitrist - She wants visual perception, visual tracking, and depth perception looked at. Not what he sees, but how he sees. This could lead to an explanation of limited eye contact or limited social interaction. (From PubMed.Com: The role of the optometrist in treating children experiencing learning disabilities embraces numerous areas beyond the customary optometric services. Etiological, diagnostic and therapeutic factors are discussed stressing visual functional disorders, perceptual-motor and developmental lags and cognitive style.)

2. a Gasteroentologist, which will test him for acid reflux, which could explain his poor sleeping patterns, resulting in tired, lazy, and poor concentration/attentive skills. She also wants them to confirm or rule out a lactose intolerence, so we know if we should keep him on or off dairy.

3. a Neuro Psychologist that would look at cognitive skills and agree/disagree with the diagnosis. A neuropsychologist is a psychologist who specializes in studying brain behavior relationships. Neuropsychologists have extensive training in the anatomy, physiology, and pathology of the nervous system. (Sensory issues & problems deal with the brain's inability to process the information correctly that the nervous system is sending it) This person can also be involved in the IEP (Individualized Education Plan) meetings with the School District. She can help to be an advocate for John's Educational Needs.

After seeing these 3 specialists, we will then re-visit Dr. Bauman in January.

The other thing that is recommended to do is at Casa Colina. We are getting a swallow test done with a speech pathologist. The teachers at Casa think he is aspirating while eating. (inhaling food/debris into the wind pipe or the lungs) This is caused by apraxia or low tone in the mouth. Basically, poor oral motor skills causing his muscles within his mouth to not work together while eating. (She also told the START teachers that we may want to consider a sleep study because if he is truly not sleeping well, it would explain many of the symptoms John shows during the day from lack of sleep.--although she didn't mention it to Bill & I)

Now, as far as moving forward with his "education", she gave us a bunch of advice. She says she does not want to see him in an autistic class or a class with kids who have behavioral problems because she believes John needs models in the classroom to teach him how to interact socially. She is afraid that it will hinder his development to "learn" by picking up on autistic behavior and not have a model that he can raise up to. She said that Katie has been John's best teacher and helps to structure his play.

So, she recommends that he be put in a preschool program that is "integrated" with children who are "normal" , as well as slightly delayed, but not with kids that have behavioral problems for fear he'd model the behavior. She wants him in the bottom or the middle, as far as skill set, but not at the top. She says other states have wonderful programs for this, but she doesn't think California has anything set up like this. She said that the integrated class would have 2 teachers and then a one-on-one aide for John to be guided back into participation if he wanders.

For me, Dr Bauman's words, diagnosis, and advice validated all the feelings that I have had --- some days feeling like it's "textbook autism" and then other days that seemed like the diagnosis was wrong. But, to be clear, the diagnosis was never wrong. 6 months ago John was a different kid. He had no speech, his cognitive level was very immature, he had no joint attention (ability to point out objects), etc. After understanding this disorder, the only diagnosis he should have received 6 months ago was autism. The fact that we are at PDD-NOS is an indication that early intervention is working, that Neurofeedback is working, and that with prayer, hope, hard work, and a battle plan, there is a chance for healing.