Help Solve a Mystery

My son Cody, who has an Asperger’s diagnosis, has been regressing in several areas over the last year. The first thing I noticed was his handwriting. The first photo is from the beginning of last school year. The second photo is from a few weeks ago. I took him to the eye doctor thinking it may be his vision as he requires a new prescription every six months due to the deterioration of sight in his left eye. They said it was definitely not due to his eyesight. Then I met with his teacher this week on another matter, and she told me his coloring is atrocious. This was shocking. If you look a few posts back, you will see examples of the amazing art he was creating just a couple of months ago. Also noticeable are the loss of his ability to spell even the most basic words, and the loss of his ability to do simple addition and subtraction. This is so troubling because he has been an excellent speller since age three and has been doing addition and subtraction since that age, too. When he was 18 months, he experienced a regression that left him unable to walk and talk even though he was doing both by ten months. He never fully recovered from the regression, but has made tremendous progress including gaining back his speech and ability to walk though he does have to wear orthotics. I am really concerned something like that is going to happen again.

You might wonder why I’m sharing this with you rather than a doctor. Well, I have shared this with his doctor and she has told me to ask another doctor and so the circle begins. This is typical of Cody’s doctors as none of them have a clue what to do with him. I have always had to figure things out on my own and that is why I’m sharing this with you and asking for your help.

Have you ever seen anything like this before? Do you have any suggestions on what it might be? For those of you who have children on the spectrum, is this a common occurrence? I thought he should see a neurologist, but his primary thinks he should go back to his psychiatrist. If this were your child, what doctor would you take her or him to?

I would really appreciate it if you would pass this post along so that maybe someone will see it and can help me figure out what steps to take to get my son to the right doctor rather than traveling around the usual circle without ever getting an answer.

Thank you!

This entry was posted in Daily Life and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

6 Responses to Help Solve a Mystery

  1. It is interesting to me to see that his logical reasoning while numbering is good. I would collect more data as an isolated activity can show variations of effort that may only reflect the mood he was in or his interest in the topic. Can he read it back and remember what he was trying to write? If I was looking at the two, I would point out that the second example shows a clear improvement in the amount of content he is trying to process. 🙂

    • Sarah Joyce Bryant says:

      Thank you! The regressive behavior is consistent across all moods and environments. They aren’t isolated incidents. I had thought that originally and just observed for a while, but it keeps getting worse. Earlier this week he could no longer figure out how to count on his fingers. Also, the majority of the time he cannot read his handwriting or remember what he wrote. I’m learning to decode it.

  2. Jamie says:

    If he’s regressing in many areas – especially something like counting on fingers), I would take the primary’s advice and see what the psych has to say. But I would keep pushing for a neuro consult. That doesn’t seem like a psych-type issue to me. I would allow the primary to see that it isn’t by taking the examples to hi/her to more or less prove my POV. And allowing the doctors to ask him to read what he wrote, to count on his fingers, etc. should also be a good sign that there could be something else going on. I don’t know if he’s on any meds for anything, but there are a lot of meds that interact with each other in strange ways – sometimes in the cognitive areas which show themselves in examples like you’ve given. I know an older woman here who’s entire personality has been “changed” due to a crazy (read: quack) doc who doesn’t seem to be interested in doing anything more than prescribing more meds when more issues come up. Just a thought. Good luck getting him taken care of. It can be frustrating to be our child’s advocate, but it’s also amazingly fulfilling to know you’ve gotten something taken care of for them. 🙂

    • Sarah Joyce Bryant says:

      Thank you so much for responding, Jamie. I will definitely be taking him back to his psychiatrist, but I agree that it seems to be some kind of neuro issue. Unfortunately, he was on seven medications at the beginning of this summer. Each time he was hospitalized for aggression, they added another one. In the past two years he has only gotten worse, so I made the decision this summer to take him off of all meds. I had to put him back on Risperadol, though, because he has auditory and visual hallucinations and they were much more severe off the meds. His handwriting was deteriorating prior to taking him off meds (when I started to notice the change in his handwriting he had been on the same meds for about six months). The spelling and math has been slow like the handwriting; but the coloring and inability to count on his fingers is new.

      Thank you for the encouragement. After several years of failures, I had several successes over the summer. It is definitely a wonderful feeling to know I followed my gut instinct on something, even though it went against professional advice, and it worked. His behavior is the best it has been since his regression in 2006.

      • Jamie says:

        He just needs his Mommy to believe in him. 🙂 It’s good to watch your concern and the way you fight for him. Those are things he will always remember.

  3. Melissa says:

    My son regressed when he was in 5th grade and it turned out that his needs were not being met at school. He was isolated in a crowd and could not communicate to me how terrible lonely and uncared for at school! It became so unbearable that we had to MOVE to an entirely new school district! The great news is now he is completely supported and gets lots of attention and is a very happy young man! His communication to me was his regression. He could not tell me in words.
    Hope this help… He must feel safe and cared for all day. Does he act up when he has to go to school? This is the first sign… or is he happy to go?

    hope this help… best wished on your journey!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s