Oh, My, How Things Have Changed...

It has been almost 2 months since my last post, but not due to lack of things to talk about. On the contrary, there is far too much to even begin to describe what has been happening in our lives lately. Unfortunately, I do not have a lot of time right now to give a lot of details, but I will do my best to expand on this at a later date. I just wanted to share a brief synopsis since many of you have been inquiring on what has been going on with Katelyn...

Katelyn's presentation of symptoms has really changed drastically over the last few months. Every professional who has come in contact with her recently has agreed that she no longer seems to be presenting like autism, but instead like a psychiatric disorder. Our family now believes that she is experiencing some sort of hallucinations, including command hallucinations that prevent her from eating, make her hurt herself and others, and more. While she is far too young to be given a diagnosis, pretty much all of her symptoms meet criteria for early child-onset schizophrenia. It is extremely rare for a child of her age to present with schizophrenia, but after what we have witnessed over the last few months, we are convinced that she has some sort of psychosis. And like I always say, just because something is extremely rare does not mean it doesn't exist. I don't care if the odds are 1 in a billion...if you are that 1 person, statistics have no meaning.

We are in the midst of trying to advocate for our daughter as we always have, but now we are facing many brick walls since we are entering the realm of mental illness. While autism is gaining more and more awareness and supports, unfortunately there are not many resources for childhood mental illness. Despite being kicked when we are down in what appears to be an uphill battle, we will not let this stop us from continuing to fight to get help for our beautiful little girl. Through no fault of her own, or anyone else's for that matter, Katelyn was dealt a difficult hand in life, but we will not sit back and watch her suffer. It may take years, and many bumps and bruises along the way, but we have faith that we will eventually find answers and appropriate treatment for what is causing our daughter so much pain.

Thank you all for your support throughout this extremely difficult time. Whenever I find the time (so probably never, haha), I will be revamping this blog since we most likely are facing something other than autism. However, I will continue to support autism research and awareness.

It's Good to be Back...

Katelyn was officially discharged from the PPHP program on Monday. The staff had a little going away party for her while I met with the doctors to discuss her discharge plan. The kids sang a goodbye song to her and then it was time for her to leave her permanent mark in the form of a yellow painted hand print on the wall. After four and a half weeks in the program, it was now time to complete the transition back to her preschool.

The week went fairly well overall. Her teacher reported that Katelyn seems very happy to be back, but that she definitely requires constant attention, which we completely expected. Because of this need, the school has provided her with a 1:1 aide in the classroom. I am also driving her to and from school because we are concerned that taking the bus could cause more anxiety for Katelyn at this point, despite the fact that she really enjoyed it in the past. We will be meeting with the school on Tuesday for her IEP meeting to further discuss her current needs and to make sure that all appropriate services are in place.

Her teacher and other support staff are very happy to have Katelyn back, and we are so glad that she is back in her preschool classroom that she loves so much!

Here are some photos from her last day at the PPHP program:

Let the Transition Begin...

Katelyn has been in the partial hospital program for 4 weeks now. She seems to be adjusting well to the Prozac, so the doctor decided to increase the dose slightly, which we did on Tuesday night. Her level of anxiety is still quite high, but it has only been a little over two weeks since she started the medication, which can take much longer to reach full effect. It does, however, seem to be helping with the depression aspect. So far, we have seen some significant improvements in terms of her ability to enjoy things, laugh, and smile, and she is now showing some interest in previously cherished objects, including Giraffe (although not anywhere near the extent that it was before). She is slowly becoming more tolerant of other children it seems. Normally, she would lash out and hit another child for getting too close to her, but now she is occasionally allowing another child to give her a toy or even a hug. She is also smiling at other children a little bit and saying "hi" spontaneously.

We are seeing an increase in spontaneous screaming, and she has been getting very hyper and overstimulated lately, so we are going to keep an eye on this because it could be a side effect of the medication. However, if we have to choose between a hyper child and a depressed child, we would much rather have the hyper child who is able to laugh, be silly, and enjoy things once again, as long as it doesn't interfere with her ability to function at home and school.

Because we are starting to see some improvements, we have decided to attempt to begin a transition back to her preschool. This past Tuesday, her teacher came to visit her at the day program. Today, she is going for a half-day at her preschool and her therapist from the day program is going to be there to assist in the transition, and the same will happen on Monday. If all goes well, she will be discharged from the hospital program on Tuesday. We will be meeting with the school the following week to discuss her current needs (since they are very different than they were previously) and write up a new IEP to ensure that all of the necessary services are in place for her as soon as possible. We are looking forward to getting her back to her preschool with her wonderful teacher, principal, and therapists, who have all given us a tremendous amount of support and guidance throughout this whole ordeal. They truly love and care about Katelyn and we couldn't be more grateful to them.

Although we are seeing some positive changes, she still has a lot more to overcome. It is going to be a long road, but with support from professionals, family, and friends, we are confident that we will get our beloved Katelyn back to where she needs to be.

So Far, So So...

Katelyn has been in the partial hospital program for almost 3 weeks now. She likes the staff and seems to look forward to going there, but she is still struggling in many ways.

After observing her and collecting data from her family, teacher, and diagnostic tests, it has been determined that she is suffering from a severe anxiety disorder and most likely depression as well. There is most likely something else going on here in addition, but right now the focus is to alleviate some of her anxiety since she is in an insurmountable amount of distress, which is making it impossible for any other behavioral interventions to have an effect at this time. Therefore, last Tuesday, after careful consideration by her psychiatric team and family, and weighing the pros and cons, we agreed to a trial of low-dose Prozac to hopefully help get her level of anxiety to a more manageable state. This was an extremely difficult decision for us, but at this point, all other avenues have been exhausted and it is clear that nothing is going to be able to help her until we get her anxiety under control. Now, we just have to wait and see if it has an effect, which could take weeks.

We have seen some improvement in certain areas, but she still has a very long way to go. She has shown some interest in activities lately, such as doing puzzles or building towers with giant Legos. However, she still requires a significant amount of adult direction and encouragement to become engaged in most activities. She also has been smiling and laughing more, and even showing some interest in being silly with Ashley, although she is still aggressive towards her at times. Unfortunately, she is still perseverating constantly, even worse than before, asking for things over and over and over and over again for hours on end, and then screaming or becoming aggressive when she does not get immediate gratification.

Because she is so unstable at this time, we have decided to postpone her reevaluation at the May Institute until she is better able to demonstrate her true potential and capabilities. At this point, we honestly are questioning whether she truly has autism or if this is something entirely different masking itself as autism because some of the behaviors that she is demonstrating (i.e. her awareness of how her actions affect others, doing things "out of spite," etc.) are not consistent with an autism diagnosis. Even the director of the program stated that he does not feel that she presents with classic autism symptoms at this time, which is what her diagnosis currently is. Although she does exhibit many "red flags" for autism, he feels that we will have to wait and see over time how it all plays out to determine if she truly has autism or just some characteristics. So we will definitely be having her reevaluated at the autism diagnostic center when appropriate.

At this time, it is unclear how many more weeks she will be in the program, but we are trying to be optimistic that she will continue to make improvements. We are hoping that we will see significant progress once the Prozac takes effect since she is still being tormented by the level of distress that her little body and mind are experiencing on a constant basis, which is also taking its toll on our entire family. I'll continue to provide updates when I can. Thank you all for your continued support, love, and prayers.