Chris, Doctor's, and School: Update

I've been busy on the phone and net today, trying to find what needs to be done. Chris has an appointment next week with the psychiatrist. The first visit is a "therapy" visit, and then they'll go from there. It sounds like they do that first, before deciding on what course of action to take in evaluating for problems.

I also made an appointment for noon tomorrow with Chris's doctor. It's to keep him up to date on what is going on, as well as to ask for a blood test to be done on Chris to test for Fragile X.

I have heard of it before, but never knew what it was. Someone during all this crazy emotional week recommended looking into it, so I marked it down on the list, but until today, hadn't looked -at- it. I am glad I did, because reading the behavior paragraph read like it was written about Chris.

Children with fragile X syndrome often have many positive behavioral characteristics.  They are described as sweet and loving, with a strong desire for social interactions. Children with fragile X often have good senses of humor and enjoy jokes and humorous situations.

Children with fragile X also often have a variety of behavioral challenges. Behavioral challenges are one of the main areas listed on checklists for the identification of persons with fragile X syndrome.

A high number of boys with fragile X (80-90%) are described as distractible and impulsive, with symptoms of attention deficit hyperactivity disorder (ADHD) or attention deficit disorder (ADD). They may have short attention spans and difficulty staying on task. Girls may show less hyperactivity, but still have many symptoms of ADD.

Many boys have unusual, stereotypic behaviors, such as hand flapping and chewing on skin, clothing, or objects, which may be connected to sensory processing problems and anxiety. Sensory processing problems may manifest themselves as tactile defensiveness, such as oral motor defensiveness, sensitivity to sound or light, and poor eye contact. About 90% of boys with fragile X syndrome are reported to have some type of sensory defensiveness.

Anxiety in both boys and girls manifests itself in various ways. Some persons with fragile X become very worried about changes in routine or upcoming stressful events (e.g., fire drills, assemblies). This is often referred to as "hypervigilance". Parents often report that their children stiffen up when angry or upset, becoming rigid and very tense.  Sometimes, they simply tighten up their hands. Tantrums may be a result of anxiety and a feeling of being overwhelmed. Crowds and new situations may cause boys to whine, cry, or misbehave, in attempts to get out of the overwhelming settings.

Many of the behavior problems of both boys and girls with fragile X syndrome overlap with the pragmatic (conversational) difficulties they have in language. The poor eye contact and difficulty sustaining a conversation cause many social weaknesses. Perseverative speech and self-talk may be symptoms of anxiety.

Some behaviors that overlap with the diagnosis of autism are often reported. The majority of children with fragile X syndrome do not have all the characteristics of autism, but about 15% to 33% are diagnosed as autistic. More often, children have "autistic-like" features, such as poor eye contact, hand flapping, and poor social skills.

Girls with the full mutation of the fragile X gene appear to have some specific areas of concern in the area of behavioral and emotional difficulties. Shyness, anxiety, depression and difficulties with social contacts are most often mentioned as characteristics of girls with fragile X.

I  can't believe just how much of that IS what Chris is like. Right down to chewing on skin. Chris chews the skin off his fingers. The doctor has always said it was a tic.

There are some physical characteristics that I feel fit him as well. For instance, he has a long face, and somewhat prominent ears, with soft skin, and a lack of overall muscle tone. Speech problems are also associated with it, and Chris has always had problems with speech.

There are other things that I don't know if they fit him exactly, but could. Either way, this is one of those things I can have tested for and know after a simple blood test. It takes 2-3 weeks to get the answer back, but the blood test is 99.999% accurate. That means, it's nothing like getting tested for all this other stuff.

It means that the diagnosis is accurate- not just a stab in the dark based on the symptoms on hand. That's my favorite part- we can either confirm or disregard it without taking years, medications, and errors to figure it out.

I'm going to bring up Tourette's again as well, and let the doctor know he has an appointment with a psychiatrist next week. Since the place in GR won't accept him as a referral, I'm hoping they can find someone here in Lansing that will be able to.

I talked with the school this afternoon. I called asking for documentation on the problems, and letters from his teachers describing the problems he is having in class, in their own words. I explained that I need it for the doctor's office.

Of course, it won't hurt having one on hand, either.

I wound up being transferred to the principal, who apologized for how things happened this morning. He also told me Chris was welcome back at school (duh- they didn't kick him out, I pulled him out!), and at the concert tonight. I told him we would not be attending the concert, but I would consider the school.

He recommended having me come in with Chris in the mornings, get him settled into class, and keep an eye on him for an hour or so each morning, until he's settled, since he has a hard time getting settled in the mornings.

I told him I'd think about it, but at the very least, Chris would not be in school tomorrow.

I doubt he'll be going back. I just can't subject him to that.

Anyway, there's the newest update. I really hope that a month from today, I'll have actual, real answers.