Results From Neuropsych Evaluation...

This past Wednesday, we met with the neuropsychologist for the feedback session to discuss the results of Katelyn's recent neuropsych evaluation. The doctor confirmed that, in addition to PDD (autism spectrum), Katelyn DOES have psychosis. She said that it is still too early to determine a specific diagnosis, such as schizophrenia, but that she is definitely responding to hallucinations, or what the doctor preferred to call "extra-sensory experiences" that make Katelyn afraid and do bad things. At this point, she will keep the PDD diagnosis, but her diagnosis could change in the future since childhood schizophrenia and PDD have many overlapping symptoms. The doctor talked about how rare childhood psychosis is, and then when you couple it with PDD, it is even more rare to see this in a child her age (5 years old). She also talked about Katelyn's extreme level of anxiety, which we already were aware of. Who wouldn't be anxious with what she is going through?

Even though this has been suspected for quite some time and I knew in my gut that Katelyn was having hallucinations, it is a bittersweet feeling to finally have confirmation. Having been told by so many "professionals" in the past that, "Oh, that is just autism," it is reassuring and validating to finally have doctors agree that this odd behavior is NOT autism at all. However, it is still difficult to hear that your child truly is suffering from psychosis. It doesn't change anything about how we all love Katelyn and who she is; it just means that we will need to continue to fight harder and harder to ensure that she gets all of the services she needs to reach her fullest potential. It will be a life-long journey for her, but we will all be here to help her navigate through her perceived world and reality.

Thank you to all of you for your support over the years.

Another Video of Katelyn...

Here is another video of Katelyn I put together to hopefully help her doctors to determine what is going on with her. It is less than 10 minutes long, but shows a pretty good amount of her odd behaviors and language. There is no question this is not a characteristic of her autism, but it is becoming more apparent as she gets older that it could be psychosis/hallucinations.

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.

Video of the Press Conference From Today, Plus Q&A About Investigation Results...

Video of the Press Conference discussing possible link between autism and vaccines. Worth watching, regardless of your opinion on the subject. We all need to be educated consumers and be willing to listen to all sides of the story when it comes to the safety of our children...



Q&A about the results of the investigation, as well as link to original research paper...

High Rates of Autism Found in Federal Vaccine Injury Program: Study Says More Answers Needed

Link Between Vaccines and Autism? Press Conference Today, 5/10/11, at noon EST...

Regardless of your beliefs about a possible link between autism and vaccines, please tune in to the live webcast today from the steps of the US Supreme Court, streaming live at the following website:

http://www.ustream.tv/channel/ebcala

Here is some more information regarding what will be discussed, thanks to Ginger Taylor and her blog:
-------------------------------------------------------------------------------------
In 2008 Johns Hopkins Neurologist Jon Poling went public with the news that his daughter Hannah, who regressed into autism following her 18 month vaccines, was paid by the Vaccine Injury Compensation Program.

CDC, in a public statement, claimed that the Hannah Poling case was "rare" and should not be generalized to "normal" children. Days after the Poling's announcement, the Hiatt family also went public with their VICP ruling that their autistic daughter Madison was also a vaccine injury victim. Then the Banks family went public. Finally, CBS News reported finding 7 more vaccine/autism cases that dated back to 1991, the very beginning of the autism epidemic.

So the autism community wanted to know... just how many cases of autism have been paid by the program that was established in 1986, how "rare" is this, and what did the government know about vaccine injury and autism causation that they were not telling the public and the medical community. After being questioned by a journalist, the department of HHS that oversees the VICP issued the following statement on whether this was an admission that the government was now paying children for vaccine induced autism. The "official response" from HRSA:

"From: Bowman, David (HRSA) [mailto:DBowman@hrsa.gov]
Sent: Friday, February 20, 2009 5:22 PM
To: 'dkirby@nyc.rr.com'
Subject: HRSA Statement

David,

In response to your most recent inquiry, HRSA has the following
statement:

The government has never compensated, nor has it ever been ordered to
compensate, any case based on a determination that autism was actually
caused by vaccines. We have compensated cases in which children
exhibited an encephalopathy, or general brain disease. Encephalopathy
may be accompanied by a medical progression of an array of symptoms
including autistic behavior, autism, or seizures.

Some children who have been compensated for vaccine injuries may have
shown signs of autism before the decision to compensate, or may
ultimately end up with autism or autistic symptoms, but we do not track
cases on this basis.

Regards,

David Bowman
Office of Communications
Health Resources and Services Administration
301-443-3376"

This admission of a link to autism, and the disturbing revelation that the government was not even planning on counting how many autism cases it had paid from the vaccine injury fund, made it clear that HHS's claims of concern for the rise in autism rates and concern for vaccine safety were less than sincere, and that it was time for an investigation into the VICP to find out how many of the cases of vaccine induced encephalopathy (brain damage) resulted in "autistic behavior, autistic symptoms or autism" as Bowman had referenced.

[Today] the results of this two year investigation will be revealed and we will get a better look into what the government knows about vaccine/autism causation and how long they have known it.
-----------------------------------------------------------------------------------

My own personal opinion about the possible link between autism and vaccines:
I have a daughter with autism and I do NOT believe vaccines caused her autism. However, I believe, like many others out there, that there could be a link between some children who are susceptible to autism genetically and just need an environmental trigger, such as an ingredient in vaccines, that causes the autism to come out. Just like some of us are more susceptible to diabetes or cancer. Not everyone who gets vaccinated is going to get autism, and not everyone who doesn't get vaccinated is not going to be autistic. It is just if you are one of the "unlucky" susceptible people, an environmental trigger could push you over the edge. People who don't have kids with autism or who aren't directly affected by it need to stop judging others who live with this in our lives on a daily basis. And open up your ears. Not everyone is anti-vaccine, but pro-safer vaccines, and pro-research. And there has NEVER been a study that PROVED there was no link, there just haven't been publicly released studies that proved there were (although I am a believer that there is a lot of data out there showing the government, Big Pharma and CDC know far more than they let on).

‎"A country that requires all children to receive a product - no matter how beneficial - knowing that some children will die and others' lives will be destroyed by the use of that product, risks losing all moral authority." -- James Turner, JD

We're Now On Facebook!

Hi everyone!

Now you can follow my blog on Facebook! You can click on the LIKE button on the right upper corner of this page, or you can visit the page directly by clicking HERE!

Thanks for your continued support! :)

A New Dawn, A New Day...

As usual, a lot has changed since my last post... As time went on, we began to realize that Katelyn needed an educational placement that specialized in children with autism spectrum disorders and other related issues. After having her neuropsychologist visit her preschool classroom, it was determined that an out-of-district placement was necessary in order to provide Katelyn with the most appropriate educational setting. We hired an educational advocate, and subsequently a special education attorney, and we were able to achieve the ultimate goal for our daughter. After an emotionally and financially draining process, the school district agreed to out-of-district placement at a very reputable private day school that specializes in autism that provides ABA instruction all day, which also happens to be the same place where she was originally diagnosed at age 2.5. She also has been receiving home ABA services again through one of the agencies that worked with her a few years ago, and this has been extremely productive for her. We always knew that she responded well to ABA teaching, and we're so glad that she will be receiving ABA instruction on a consistent basis again since it was so successful in the past.

Today was her first day at her new school and it truly could not have gone any better. She was excited this morning to be going to a new school. We had created a social story with pictures of her new school to help with the transition and she really enjoyed reading it. When we arrived at the school, she was very happy and talkative. We were brought to the integrated preschool classroom, which has peer models. When we arrived, the other children were not in the classroom, which made it very easy for Katelyn to get situated and check out her surroundings. After a few minutes, the children returned to the classroom, and I was not sure how Katelyn would react. But she surprised us and was happy to see "new friends" and even asked one little girl her name (indirectly, asking us "What is her name?")! The little girl responded with her name and then I prompted Katelyn to respond that her name was Katelyn, which she did. It was snack time, so Katelyn sat at the table with teachers around her and I made my exit. Katelyn asked me to stay, but did not get upset at all when I told her I had to leave and would be back later after she played with her new friends.

When I arrived to pick her up, I saw Katelyn playing with toys near the other children. The staff informed me that she had a wonderful day and that she was able to spend the entire day in the integrated preschool classroom! The original plan was to have her in another classroom without peer models and slowly introduce her to the integrated setting, if possible, but once again, she surprised us! She went to the cafeteria for lunch, sat independently with her friends at circle time, and even participated by raising her hand during art class! At times, she was taken aside to work on some discrete trial training and assessments, and while she was a little distracted, she did not have to be removed from the room or behind a partition as was expected. Overall, she had an amazing day!

When she saw me, she was very excited and she said she had fun at her new school. She even went over to her new friends and said bye to them. Then she shouted, "Thanks, new school! Thanks, new friends!" and became very happy and clapped when I told her she would be coming back tomorrow.

We are so relieved that she enjoyed her first day at her new school and we feel 100% confident that this was the right decision for her. We can't wait to watch her continue to flourish and exceed our expectations. We are eternally grateful to all of you who provided support and prayers that Katelyn would get what she desperately needs. There is nothing we wouldn't do to help our daughter and we will continue to be vigilant to ensure that she continues to receive the appropriate services that she deserves.

Getting ready for her first day at her new school!

Taking it all in...