Up, Up, Up and Away...

We met with Katelyn's developmental pediatrician yesterday to discuss medication options. Her doctor decided to try one more increase of the Risperdal, stating that this will probably be the last time and we may need to try another med if this is not effective. She increased her morning dose to 1-1/2 tablets and kept her evening dose at 1 tablet (0.25 mg). We are hoping this does the trick since she has not had any adverse reactions to the Risperdal so far.

This Saturday, Katelyn will complete the last 2-hour session of her neuropsych evaluation and we will meet for the feedback appointment on 12/7.

"This Is Not Autism" (videos and phrases)...

As I've mentioned before, Katelyn presents not only with symptoms of autism spectrum disorder, but also of some other possible co-morbid psychiatric condition, quite possibly a psychosis of some sort. We have seen a recent increase in this odd behavior and recent increases in her Risperdal medication have no longer been effective as they were in the past.

Here are some recent videos of Katelyn that show some of what we are seeing at home. What we observe is usually far "worse" than this (difficult to capture on video), but it gives a rough idea of some of the things we are seeing, no pun intended...

And here are some recent phrases Katelyn has said when describing what she sees/hears (pardon the poor grammar, as these were just quick notes I jotted down):

11/10/11
Sitting with me at table while I did work...saying voh, webs, etc., then told me the webs were talking to her and laughing at her. Difficulty with feeding at dinner. Spitting out, looking up, talking about ock, etc., being defiant saying no, but could tell did not want to act that way.

11/11/11
Looking up at wall, taking shoes off as asked, then said No to putting them away. Looked up and said she saw Ew. I repeated, “You see Ew?” She said yes, Ew is climbing up the wall right there and pointed. She then said he was in a purple web with a sprinkle in it. Then she said Ew is yucky looking and that he is green. She said he talked to her and told her No about putting her shoes away.

11/14/11
In mommy’s room, talking to herself saying “Where is Ew?” over and over. I asked her what Ew looked like and she again said he is “Yucky.” I asked what color is Ew and she again said “Green” – with the odd mischievous look on her face. Then began blowing my hair and whistling and laughing hysterically saying Ew while doing it even though I told her I did not like that.

11/18/11
Getting dressed in living room, kicking me, laughing hysterically while looking off, talking about Ew, then Waw, saying Waw over and over and then she said she sees Waw and that Waw is a blue curl stuck up on the ceiling. Got extremely manicky and uncontrollable and defiant while talking about Waw.

11/25/11
In mommy’s bed with me and Ashley. Looking up at ceiling, saying Yaw and Yock. Then said I see Yock. She said Yock is not nice. Yock is in a purple web. Yock is naughty to me, Yock is always naughty to me. Then talked about seeing colorful bugs in her bed and on her sheet. She said they were red, green and blue. Said she saw them in the web with Yock. Got upset when I told her I didn’t see the colored bugs. Started talking in weird words, saying Yock is Guckak and Bocka and other strange words. Lots of talk about Yock throughout the day, even at stores, etc.

Placement, Re-Placement...

Once again, it has been a while since my last update. We have spent the last few months having meetings and discussions with our district school system and Katelyn's current private school regarding the appropriateness of her placement. There are a few issues that have developed since she started at her current school. The biggest is that her profile has significantly changed, so her needs are vastly different from when she first began there. The original plan was that she would be in a substantially-separate classroom without peer models since it was felt that she would not benefit from peer models and that she needed intense 1:1 instruction in an ABA environment, but she would have opportunities down the road to integrate with the peer models if appropriate. She continues to demonstrate that ABA is the appropriate method of learning for her, but she has proven all of us wrong in that she IS benefiting significantly from being with the peer models in the integrated preschool classroom. In fact, she has never even been in the sub-separate classroom as planned since she did well with her first exposure to the peer models on day 1!

So we've been presented with a challenging situation since we all agree that a sub-separate classroom is NOT appropriate for Katelyn. However, her current private school only offers peer models in the preschool classroom, so once she ages out (max is age 5 and she is currently 5), her current school will not be able to provide an appropriate environment for her.

This led the district school system to propose her return to district to a brand-new kindergarten program that they felt would be most appropriate for her. However, after a lengthy meeting this morning to discuss observations of the proposed program, as well as her current presentation of symptoms and complicated needs, we are in agreement that the district also cannot provide an appropriate program for her at this time.

So where does that leave us? We are now looking for a new placement for Katelyn that can meet her unique needs. Since she is quite complicated in her presentation (displaying characteristics of not only autism, but most likely a co-morbid psychiatric illness, such as psychosis) and her needs are unique, it is going to be difficult to find a school that is appropriate for her. She will require an environment that can offer not only intensive ABA instruction with highly trained staff and BCBA supervision, but also one that can offer opportunities for inclusion with peer models, something that many schools around here only offer until preschool age like her current placement.

So at this point, we are in agreement to look at a handful of schools in the area to determine whether they can offer an appropriate program for Katelyn. We are also in the process of completing another neuropsych evaluation to get a better understanding of what her current needs are, especially since we are seeing an increase in the odd behaviors (what appears to be psychosis/possible hallucinations) despite the fact that her medication has kept this at bay for the past year. Therefore, a new medication trial may need to be attempted.

We are thrilled with her current placement and the progress that she has made there, but we all recognize that Katelyn's needs cannot be met once she ages out of the current program. So the next leg of our journey with Katelyn begins...

Too Young To Diagnose...

People often say we need to treat the cause of a disease rather than the symptoms, since treating the symptoms without knowing the cause is like putting a band-aid on the problem, not solving it. We need to get to the root of the problem, what is causing the symptoms? Well, this doesn't apply to childhood mental illness. Too young for an official diagnosis, all we can do is treat the symptoms that the child presents and hope that they are effective, and if not, make necessary adjustments along the way until the child is old enough to determine an "accurate" diagnosis.

A few weeks ago, I took Katelyn to see her developmental pediatrician for her routine followup appointment. We have a great system of communication and I regularly update her via email on how Katelyn is doing. I had described some recent concerning events, including what appeared to be mood swings (going from rage/aggression to hysterical laughter), hyperactivity and uncontrollable laughter episodes where she does not seem to be in touch with her surroundings, and some odd signs that we had not seen since starting her current medications roughly a year ago that made us suspect she could possibly be seeing or hearing things that are not really there.

Since she is now so much more verbal than in the past, she is able to articulate her thoughts a bit more clearly, which does sometimes help, but at her young age of just shy of 5 years old, it still leaves us questioning how much is "normal" and how much could be signs of mental illness? For instance, many children have imaginary friends or have great pretend skills. In fact, one of Katelyn and her sister's favorite things to do is pretend they see Swiper the fox from Dora the Explorer and yell, "Swiper, no swiping!" and run away, laughing. However, the difference in my opinion of what is "normal" imaginative play and abnormal behavior is when the child becomes visibly frightened and goes into a complete meltdown, over what could otherwise be perceived as pretend play. I am not a mental health professional, but it doesn't seem normal to me that a child would be terrified by "normal" pretend play or imagination.

Below is a video from April 2011 that shows just one example of what I'm referring to. I will fully admit that I did not know what the proper response would be in this situation, to tell her that what she thinks is a little girl is not real or to pretend that I did see the little girl too. I was not prepared for this and was caught off guard.

At the appointment with her developmental pediatrician, we discussed the symptoms and changes in detail. At that point, the doctor said that she feels that Katelyn may be displaying psychotic features as we have suspected for a while, and that we should slightly increase her atypical antipsychotic medication to see if it helps. She further stated that if this is the case, Katelyn may not be able to distinguish what is reality and what is not, and that we need to provide her with as many positive, happy moments in her life in order to help her discern in the future what is real and what isn't when she is an adult. She will possibly need medication for her whole life to help her with this as well.

The doctor said that she is not ready to diagnose schizophrenia or something similar at this time due to Katelyn's young age, but she does foresee her receiving a mental health diagnosis down the road once a more definitive diagnosis could be reliably achieved, if possible. At this point, PDD-NOS is the closest diagnosis that seems to fit Katelyn's profile, although she demonstrates many atypical signs as well.

The good news is that Katelyn continues to thrive and improve at her new private day school. She could not be happier at her new school and she is responding very well to the ABA approach, which further demonstrates my argument that it doesn't matter what she is diagnosed with -- call it "XYZ" or "ABC" -- if it is working, then it is an appropriate method of treatment!

So, until we get an official, reliable mental health diagnosis for Katelyn, we will continue to treat her symptoms instead of trying to determine the cause, despite how difficult it is to not know what exactly is going on with your child. For now, we'll hold out hope that one day in the not-too-distant future, we will have the answer we are looking for. And whatever that answer is, we will deal with it, and do everything we can to empower Katelyn to deal with it as well.