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.

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.

"Where There Is Great Love, There Are Always Miracles"...

Since my last post, Katelyn has had significant ups and downs. Back in June, she was again admitted to the PPHP program due to her severe aggression and self-injurious behavior. She was placed on Zoloft and her Risperdal was increased. She was then discharged in mid-July and she returned to her preschool for the last few weeks of the summer program. During this time, she had significant difficulties both at home and at school.

After the summer session ended, there was a 4-week break, during which time she was showing significant regression in terms of her behavior. It was quite apparent that she could not deal with breaks in her schooling, as evidenced by her PPHP admissions and 3-week stay at Children's Hospital, all occurring after school breaks. At this point, we were considering out-of-district placement to a school that would specialize in dealing with children similar to Katelyn, exhibiting both characteristics of autism as well as psychiatric issues. Her psychologist, developmental pediatrician, primary care physician, and neuropsychologist were all in agreement that there was sufficient reason to believe that she could no longer function in a public school setting, and out-of-district placement was recommended.

I met with the school to discuss our concerns, and they were very concerned as well. They have been wonderful to Katelyn and her family throughout all of our struggles, and they truly care deeply for her. The school psychologist and adjustment counselor became part of her team and we decided that it was worth giving it another shot at her preschool since that is the ideal place for her, if possible. Her teacher suggested that all members of her team be included on an email list so that we can all be on the same page and communicate about Katelyn's treatment, which has helped tremendously. And, boy, did Katelyn surprise all of us!

Expecting the worst, we were shocked to hear that she did well the first few days of school, and even enjoyed taking the bus again! We were still cautious, wondering if the "honeymoon period" would end like it almost always did, but it has continued! And I am so happy to report that she has drastically improved ever since! She is now playing with Ashley on a daily basis -- they are like best friends now, with the occasional fight, but nothing out of the ordinary for "typical" sibling rivalry. Just weeks before, she wasn't even able to be in the same room as Ashley, and sometimes not even on the same level of the house, without having a complete meltdown. Now she gets upset if she can't be with Ashley!

Who knows what the reasons are for her significant improvements -- perhaps her medication, perhaps the hard work and dedication of her family, school staff, and therapeutic supports, perhaps the fact that we turned our dining room into a play room, perhaps a sudden developmental growth on her part, perhaps all of the prayers and love that so many people have shared with us -- whatever the cause, it is a true miracle.

We have seen what Hell is like, believe me. But having gone through all of the difficulties over the past year, and coming through them alive and intact, we've grown stronger, and we will never, ever give up hope, no matter what obstacles may come our way in the future. We now have a taste of Heaven and we will never let it go.

(Quote by Willa Cather)

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.

And a New Journey Begins...

On Thursday, I received a phone call from the principal of Katelyn's preschool (another amazing advocate for Katelyn), asking if it would be possible for me to meet with her and Katelyn's teacher and ABA therapist on Friday. They are aware that I am taking Katelyn to her first appointment with a child psychologist on Monday, so they wanted to provide me with some more input from the school to share with the doctor. Without hesitation, I rearranged my schedule and met with them yesterday. (To see a list of her most concerning behaviors put together by the school, click here.)

As I arrived at the principal's office, she informed me that Katelyn was having the most challenging day yet, and that she wasn't sure if her teacher and therapist could even leave the classroom to come to meet with me because Katelyn needed extra supervision. Luckily, another therapist helped manage Katelyn so that they were able to attend the meeting.

The school and I have had an ongoing dialogue, almost on a daily basis, regarding Katelyn's current issues in the classroom as well as at home, so there were no surprises on either end. Almost immediately, the principal mentioned that they feel that her current preschool classroom and therapies in place are no longer beneficial to her, in that they are pretty much spending the entire day trying to get her to follow the routine of the classroom safely without hurting herself and others. She then explained that, while Katelyn will always have a place at their school, they feel that Katelyn may temporarily benefit from an outpatient psychiatric evaluation and treatment program. She handed me a pamphlet for a Pediatric Partial Hospital Program (PPHP) and reviewed the details with me. Given the current circumstances, I immediately agreed that this was the right road to take at this time.

About the PPHP...
(copied from the pamphlet) "The PPHP is a highly specialized day treatment program that provides comprehensive evaluation and intensive treatment for young children ranging in age from early infancy through 6 years, and their families ... The primary goal of the program is to help children safely live at home while offering children and their families the opportunity to work on behavioral, emotional and social difficulties that occur at home and in the community."

The program offers family therapy, milieu therapy, behavioral therapy, group treatments, and psychiatric medication, if necessary. The PPHP staff includes therapists, nurses, psychiatrists, psychologists, pediatricians and support staff.

Basically, what this means is that Katelyn will be attending this program Monday through Friday from 8:30am to 4pm anywhere from 3 weeks to 2 months, depending on her needs. She will then return to her current preschool setting once she is ready to be discharged from the program, and appropriate followup treatment will be arranged. (Unfortunately, transportation is not provided, so I will be crossing state borders twice a day during rush-hour traffic to get her to and from the program, but hopefully it will be worth it!)

While it is definitely not an easy decision to make to enroll our 3-year-old child into a psychiatric program, we feel confident that this is the best course of action to help Katelyn, as well as our family. Anyone who knows me can testify that I do not do anything lightly when it comes to the well-being of my children. It has been absolute torture on all of us as her parents, family, friends, teachers and therapists, to see her suffering the way that she is, especially since she had been doing so well just a few months ago. However, we are hopeful that this program will be able to provide not only an answer as to what is causing this behavior, but also the appropriate method of treatment in order to help our beautiful daughter return to us as soon as possible.

Thank you to all who have offered us the love and support that we need to sustain us throughout this emotionally exhausting ordeal. We never envisioned this happening, but we are prepared to begin yet another journey to get our beloved daughter back. And of course, I will continue to share our story each step of the way.

Looking Back...

When Katelyn was a baby, she was extremely colicky and suffered from severe acid reflux. Because of the pain, she screamed and cried all the time. It broke my heart that she was in so much pain. She was put on soy formula at 6 weeks old, which seemed to help, but not 100%. She was put on a high dose of Axid and we had to keep upping the dose to finally get it right. They thought that she had pyloric stenosis. She could not be horizontal at all and she would instantly scream uncontrollably if she was put on her back flat. We had to put inclines in her crib and on her changing table. Finally at 6 months old, she was able to stop her medication and appeared to be reflux-free.

After Katelyn received her 2-month shots, she began projectile vomiting a lot. The next day after the shots, I was upstairs for a few minutes while she was sleeping in her swing downstairs. All of a sudden, I had a gut feeling that something was wrong. I ran downstairs and saw her slumped in her swing with her head to the side. I tried to wake her and she would not respond. I was terrified. Finally, she woke up and started screaming uncontrollably. She ended up being admitted to the hospital for ALTE (apparent life threatening event) testing. They did EKG, EEG, and other tests. Everything was normal. The doctors were baffled as to what caused the unresponsiveness. They said that the projectile vomiting for 3 days straight after the shots could have been a "normal" reaction to the immunizations. They denied, however, that her unresponsiveness could have been a reaction. I was not convinced.

A week later, she was readmitted to the hospital because she stopped breathing after a coughing fit, which caused her to choke. She was gasping for air and looked so scared, but she couldn't cry since she couldn't breathe. This was the second time in a week that we had a "life-threatening" issue. They did all sorts of tests and everything appeared normal. They said that she probably had "floppy airway," which means that her trachea walls were floppy or weak and were blocking her airway. I wasn't sure what to think.

At her 4-month appointment, they were asking us about milestones and they asked if she responded to her name. The nurse called her name...nothing. The doctor then slammed the door loudly and Katelyn didn't even flinch. When we got home, we banged pots and pans so loud that it hurt MY ears, but she didn't react at all, not even a blink. We ended up getting her hearing tested and everything was normal, although the people doing the testing really expected there to be a problem since she was not responding to the loud bicycle horn in her ear, etc. We were just relieved to know that she was not deaf.

Shortly after, I had mentioned this to my chiropractor just out of the blue. He told me that it sounded like a reaction to her shots (the unresponsiveness at 2 months and now the appearance of being deaf). I researched further and found some websites where other parents had shared their "reaction" stories. Some of them sounded exactly like what we went through with Katelyn. From then on, we decided not to vaccinate her until she was at least 2 years old because we believed that it was a reaction to the shots.