Conference Post 4-Behavioral Issues…What? Why? and What’s being done.

Dr. Kaufmann’s presentation,”Behavior Issues and Management,” was  a must go to for me. In my previous post, I concentrated on how behavioral issues affect the caregivers and family. Now, I’d like to talk about the key points he made in regard to behavior in our children.


There were six key “behaviors” he touched upon-

  1. Disruptive/Aggression/SIB (Self injury behaviors)
  2. ADHD
  3. Mood Abnormalities-depression
  4. Anxiety like (represents differently than in general population)
  5. Autistic behavior
  6. Stereotypic/repetitive/OCD like behaviors

Not all children will exhibit all of these behaviors nor in the same combination nor in the same ranking.

For instance, I would rank Anxiety like behavior #1 for Katie, with SIB #2, I rank SIB’s so high because even though they are not nearly as frequent as they once were, they are very serious when they occur-the chance of true injury becomes high. And this “ranking” is something that Dr. Kaufmann and associates are working on-a universal ranking system for clinicians so that our children are not subjected to multiple interpretations of what the issues are and their severity. He lost me a bit here as he began talking about some of the electronic devices that could be/are being considered for use in an effort to get information- a bathing cap with electrodes, some sort of stimulator that goes on your tongue, in addition to things similar to “Fitbits”. All I know, though, is that he is committed to helping our children; I knew it from the moment I met him and that view solidified over the years he was Katelin’s doctor (plus he has a soft spot for Fox, so that really sealed the deal there).

But, what ARE the some of the causes of these behaviors. Unfortunately, as we ALL know, sometimes we never discover the reason. Our children just have to suffer through until it’s over, because despite our best efforts, testing  and more testing, a known cause cannot be discovered. I hate this about Rett syndrome. However, Dr. Kaufmann touched upon several common factors-pain, sleep disruption, inability to communicate, frustration, and boredom. Now, what do we DO about them.

Pain is always the first possibility to address, especially if there are serious behaviors going on that are not common. Dr. Kaufmann freely admitted that we, as parents, need to trust our instincts and bring our kids in when we suspect something is wrong, and he also felt it was the medical community’s responsibility to do testing, even though it was often inconclusive and extremely expensive.

Sleep disruption is a big one for our children and families, I see posts about it all the time on the forums. As a parent, I recommend talking to your child’s doctor about a sleep study to evaluate for sleep apnea and requesting an EKG to rule out prolonged QT syndrome.

The last three are issues that are difficult to affect in the short term, but with increased speech therapy, the use of adaptive communication devices (both low and high tech) eventually (hopefully) behaviors associated with those concerns will decrease.

One of the few actual therapies that Dr. Kaufmann mentioned was hippotherapy (horse therapy). I can’t vouch for that, but I have seen MANY families rave about the results in their children due to hippotherapy. And, it’s only been the expense that has kept me from trying it with Katelin.

In the end, there is no easy answer, but there are ways to deal with behaviors. From personal experience, in-home behavioral therapy has helped Katelin quite a bit. Medication has as well. Communication remains a focal point for us and telling her to “use her words” instead of crying actually helps her calm down as she “tells me” and I commiserate. I don’t usually understand what is being said, but being sympathetic goes a long way. Yet, what works for one may not work for another, so for those families faced with severe behaviors, I urge you to reach out to others for suggestions and support. That’s what your fellow families and professionals are here for…YOU.

*Disclaimer unless Dr. Kaufmann is specifically stated as saying something, the remainder of input is my personal opinion*


This entry was posted in anxiety in Rett syndrome, Communication, Dr. Walter Kaufmann, Education, Rett syndrome conference 2016, Talking, Trail to a Texas Trial and tagged , , , , , , . Bookmark the permalink.

2 Responses to Conference Post 4-Behavioral Issues…What? Why? and What’s being done.

  1. Paula says:

    I have TBI due to chronic hypoxia, sleep is a big problem for me anxiety is the greatest presentation of the TBI. The best solution I’ve found for sleep is running a playlist of relaxing music. I go to sleep focusing on the music, not my worries. Celtic harp is my favorite, but I also like Rachmaninoff, cello solos, Paganini. My computer is hooked up to the stereo in my bedroom and it just runs all night. Blessings on you and Katie, I found your story by researching Retts as I am an Anavex stockholder and I am hoping that they have a solution that will help many people dealing with CNS disease.

    • melelllan says:

      Many parents use music therapy and Katie has a playlist specific for anxiety moments as well as one for general use. 🙂 I am hopeful that what proves useful it Rett syndrome will have meaning for other neurological issues. Perhaps of some interest to you would be Neuren’s NNZ-2591. Best of luck and thank you for the good wishes.

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