It Works!

Now and then we get some surprises.  This time, it was a mixed blessing, but still a blessing overall.  Stay with me and I’ll show you what I mean.

Doctors are finding surprising results from medications traditionally used for other purposes.  In this case, the medication is Cycloserine, a generic of a drug (formally under the name Seromycin) manufactured by Eli Lilly.  This drug is an antibiotic that does not carry with it the same risk factors as antipsychotics, SSRI’s, etc.  It was traditionally used in the prevention of tuberculosis.

There is a more in depth description of Cycloserine, here, where it also describes some uses.  For our part, our psychiatrist has used it for people on the autism spectrum, where it has, in his experience, worked to “open up” the verbal channels and promote speech in the non-verbal.

My 9 year old son has struggled with expression his whole life.  He has trouble connecting feelings with language and has always reacted to triggers without us knowing that he was even upset about something.  His affect has always been quite flat so it has been hard to see into his feelings, whether happy or sad.  He has never been able to verbalize any of what has bothered him appropriately, and has always historically resorted to meltdowns and unsafe behaviors without warning.

After a little more than a month on Cycloserine, there is a stark, remarkable difference.  All of a sudden he is keeping a “feelings” journal (what?!? really?!?) and speaking at length with his therapists about what bothers him at school, at home, with other kids, on the bus, you name it!  Here, you will have to understand that we had actually suspended outside therapy because we were making no progress with CBT (Cognitive Behavioral Therapy). My son could give all the “right” answers and talk the talk, but he could not speak about his own feelings or internalize anything that was being taught to him.  Even though I new very well there were sensory issues, the degree of severity with which some of these affect him are now becoming more clear.

This progress has been amazing and very helpful to all of us.  However, there has been a downside and I wanted to be transparent about that, too.  Even with other mood stabilizers in place, his mood has gone back to rapid cycling.  He is having meltdowns and some aggressive behavior.  Right now, we are tweaking his other medications to alleviate those symptoms.  Still, this result is not only what we hoped for, it is something I had almost given up on hoping would ever happen.

Thankful to doctors like our psychiatrist, who are always keeping abreast of the latest treatments, as well as really listening and understanding what we as families experience. Very grateful.

Peace,

Jenifer

Internalizing disorders

I had actually intended on writing something else today, but this has been at the forefront of our lives for quite awhile, so I think this is the post for today.

Both of my boys are heavily internalizing.  This presents many challenges on many fronts.  One of the biggest issues that face my boys is others (including therapists and psychiatrists) not understanding what is really going on.  Internalizing tends to not be “believable”.  By that I mean, when others don’t “see” it, they assume it doesn’t exist.

When psychosis, processing deficits, anxiety and other traits are present, there is a good chance all of that will be internalized rather than externalized.  Many kids have a combination of both internalizing and externalizing behaviors, but those who are heavily internalizers do not often present as “behavior disordered” in public settings, generally.  They reserve all of that behavior for the safety of home (and family members).  One of the reasons that the family dynamic is so difficult for those with bipolar disorder/schizophrenia and the like is that most of the chaos and bad behavior occurs at home.  This also leads to “blame” in the form of others criticizing parenting techniques, manners, etc.  The reality is that when kids are able to “hold it together” in public, it ALL comes out at home.  This stress on the family is overwhelming for the parents, siblings and the child with the issues.

Imagine this scenario: Child A with X illness has had a “wonderful” day at school.  According to the teacher they displayed “model” behavior in the classroom, had fun at recess, ate their lunch appropriately and did all of the required classwork.  Perfect.  Then, said child comes home.  You ask how their day has gone and they say, “fine.”  Little brother walks into the room and says, “Hi, Child A!  Look what I made for you with this play-doh!”  Child A turns around and sees the creation and pushes little brother over, screaming, “Why did you use that Play doh!  I was going to use it to make something special for Dad!”  To a parent of a child without a disorder, it looks like just absolutely unacceptable behavior.  While I won’t say that the behavior is acceptable, I have had experience with why this occurs.

What the teacher didn’t know, or see, was that Child A had a very difficult day.  The classroom, at a certain point, was very noisy and it induced some sensory overload.  It took an inordinate amount of concentration to keep Child A focusing on their work and not reacting negatively to the excess stimuli.  When a small argument broke out with two classmates that took up quite a bit of the teacher’s attention and distracted the class from a favorite exercise, Child A’s frustration was rapidly growing.  In order not to become a behavior problem too, Child A ripped a piece of paper over and over into pieces to keep calm.  When another child having a bad day was frustrated and crying excessively, Child A’s anxiety grew and it took a large amount of energy to keep calm and not start crying as well.  During practice in one of their more challenging subjects, Child A’s processing issues were making it hard to do the work properly, which made Child A angry.  Instead of showing the teacher anger, Child A said they had a stomach ache and spent a large amount of time in the bathroom.  During recess, Child A couldn’t find anyone to do the same thing they wanted to do, so Child A spent time alone on a swing and felt very lonely and sad.  On the bus ride home, Child A was so tired they fell asleep and the bus aide got angry when it took too long to wake Child A up.  Child A arrived home thoroughly done with a very trying day.

Children with internalizing disorders often have days like this. Sometimes, every day.  When they are non communicative or non verbal, it makes it all the more difficult to be helpful.  This is a perfect example of, “what you see is not often what you get.”  There are educators, professionals and administrators out there who refuse to acknowledge that this exists.  I know because I spent months and a lot of money battling some.  I have spent the better part of eleven years dealing daily with internalizing disorders in my family.  It is chaotic, overwhelming, sad, difficult and exhausting.  What families need most is support and to be heard and understood.  This is not always readily available or an easy task.  Online forums available for families of children with mental health challenges can be helpful.  Sometimes just having a willing ear is enough.  Other times, respite is necessary.  Some mental health agencies have mentor programs which are very helpful.  Local NAMI agencies have groups to attend that are helpful, and http://www.thebalancedmind.org/ is a great forum to relate with other families going through similar challenges.

Peace,

Jenifer