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.

Right Back Where We Started From...

It has been quite a while since I last posted and a lot has happened since (including the birth of our baby boy, Trevor Kyle, in January!)

In December, Katelyn had a bout of pneumonia and it really set her back. Up until then, she had been really progressing well. However, being very sick for over a week, coupled with then being out of school for winter recess, she really regressed in terms of her behavior and willingness to do things independently. Her control issues also escalated and she became even more demanding than before.

After doing some research and talking with other parents of children with autism, we decided to try a course of Nystatin since she was on amoxicillin for the pneumonia and antibiotics often can cause an overgrowth of yeast in the body, especially in children with autism. We have yet to see any improvement. In fact, as time goes on, her behavior has been getting far worse, both at home and now at school.

We are now suspecting that something else is going on in addition to her autism that is causing her to behave this way. Her teacher and therapists have never encountered a child like Katelyn and they are as baffled as we are. We have tossed around the idea that perhaps it is obsessive-compulsive disorder (OCD) or even depression that is causing her to be so demanding and controlling, but now we are leaning more towards oppositional defiant disorder (ODD). I had heard of ODD way back when I first read about autism, but at the time I did not feel that Katelyn fit that profile whatsoever. Now, however, she seems to fit it to a tee.


Here is a brief description of oppositional defiant disorder:

In children with Oppositional Defiant Disorder (ODD), there is an ongoing pattern of uncooperative, defiant, and hostile behavior toward authority figures that seriously interferes with the youngster’s day to day functioning. Symptoms of ODD may include:

• Frequent temper tantrums
• Excessive arguing with adults
• Often questioning rules
• Active defiance and refusal to comply with adult requests and rules
• Deliberate attempts to annoy or upset people
• Blaming others for his or her mistakes or misbehavior
• Often being touchy or easily annoyed by others
• Frequent anger and resentment
• Mean and hateful talking when upset
• Spiteful attitude and revenge seeking

We have been seeing an increase in aggression both towards herself and to others, especially to her sister, Ashley. Thank God she has not directed any of this towards Trevor, but I worry that it is only a matter of time before the novelty wears off. She is also starting to hit other children at school without any reason other than the fact that they walked by her. She has been increasingly demanding and controlling, and she deliberately seeks to annoy or upset others, especially me unfortunately, probably because I am the main disciplinarian since I am with her the most. She will purposely defy us, even if it means forfeiting privileges that she earned, and begged for, moments earlier. If we say yes, she says no. If we say no, she says yes. Every single aspect of our lives with Katelyn has become a constant battleground. She cuts off her nose to spite her face.

Because this is interfering with her at school and at home, we have decided to pursue psychiatric evaluation for Katelyn. Our first step is going to be getting her re-evaluated by the same doctor who diagnosed her autism. This will take place in March and we will get the results of the evaluation mid-April. We also put her name on a waiting list for a local center specializing in children's behavioral health, but they said that we will most likely not hear from them for at least two months to book an evaluation.

So now the waiting begins once again...the not knowing...the hoping that getting a diagnosis will offer some sort of help for our child and our family as a whole. We are right back where we started from when we first began this journey back in 2008, but this time it feels much different to me.

When receiving the diagnosis of autism, I threw myself into advocating for my child and learning as much as I could about autism, but this is really affecting me to my core. I cannot express how difficult it is to deal with the fact that your child may have a disorder that causes her to want to purposely upset you, or that creates such turmoil inside of her that she no longer enjoys things that she used to because she is in a constant battle within herself. I am often reminded of the nursery rhyme line: "And when she was good, she was very, very good, but when she was bad, she was horrid." And what makes it worse is that I know in my heart that this is NOT my child...this is not who she was just a few short months ago. And I will do everything in my power to ensure that this is not who she will be forever.

Sensory Overload...

When we first started to suspect that Katelyn had autism, we didn't really think that she had sensory issues. However, all of a sudden it has become very apparent that she definitely has a lot of sensory needs. She becomes overstimulated and will get herself all worked up and then crash hard. She will go from being hyper, laughing and talking a mile a minute, and then all of a sudden she will start crying out of nowhere.

It is very common for kids (and adults) with autism to have difficulty regulating their sensory needs and emotions. A lot of these sensory issues can come about due to environmental factors, such as loud noise or bright lights, but the cause is not always obvious. We are still trying to figure out the triggers for some of Katelyn's behaviors and sensory needs.

There are many ways in which to help a person with autism regulate themselves. For instance, sometimes deep pressure helps, which is the case for Katelyn. She likes hard squeezes and squishes, and to be thrown into the couch or covered in pillows and blankets. For this reason, we have implemented a weighted vest, which helps her to remain calm and focused. We have also ordered a weighted blanket, which is supposed to help with this as well. Katelyn also craves activities such as swinging, jumping on the mini trampoline, bouncing on a large exercise ball, and playing with Play-Doh and beans.

Last Thursday, I began implementing a brushing program to help with Katelyn's sensory regulation. It involves brushing her arms, back, and legs every 2 hours with a special brush, and then following this with joint compressions. So far, it seems to be working wonders! Last week, she was having frequent meltdowns and was unable to focus on her therapy, but this week, she has been doing great! She is sitting at the table and attending once again and is remaining much calmer throughout the day. I also believe that it could have to do with the fact that she is now getting used to her much more demanding schedule.

With autism comes many challenges, only one of which is sensory needs, but by educating ourselves and being willing to try new and different methods, we will find what works for Katelyn.

Happy World Autism Awareness Day!

What is World Autism Awareness Day?

"World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe. By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope."

http://www.worldautismawarenessday.org/atf/cf/%7B2DB64348-B833-4322-837C-8DD9E6DF15EE%7D/WAAD%20Brochure%20English%20Formatted%20for%20Web.pdf

Facts from the Autism Speaks Website:

Did you know…

1 in 150 children is diagnosed with autism
1 in 94 boys is on the autism spectrum
67 children are diagnosed per day
A new case is diagnosed almost every 20 minutes
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
Autism is the fastest-growing serious developmental disability in the U.S.
Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade
Autism receives less than 5% of the research funding of many less prevalent childhood diseases
Boys are four times more likely than girls to have autism
There is no medical detection or cure for autism

The Red Flags of Autism...

(The following red flags may indicate a child is at risk for atypical development, and is in need of an immediate evaluation.) In clinical terms, there are a few “absolute indicators,” often referred to as “red flags,” that indicate that a child should be evaluated. For a parent, these are the “red flags” that your child should be screened to ensure that he/she is on the right developmental path. If your baby shows any of these signs, please ask your pediatrician or family practitioner for an immediate evaluation:

No big smiles or other warm, joyful expressions by six months or thereafter
No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
No babbling by 12 months
No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
No words by 16 months
No two-word meaningful phrases (without imitating or repeating) by 24 months
Any loss of speech or babbling or social skills at any age

http://www.autismspeaks.org/whatisit/index.php

Click here to view the World Autism Awareness Day Brochure.

What are you going to do to spread awareness about autism?

Boston Medical Center, Here We Come...

I was not expecting to hear from them this soon, but the hospital called this morning to get the ball rolling for Katelyn's 24-hour EEG. It will take place next Wednesday! We have an appointment for a neurological evaluation at 10am and then she will be admitted for the procedure. The pediatric neurologist who will be doing the procedure sounds wonderful, and he has experience specifically with autism, which makes me feel very comfortable.

We started Katelyn on the low-dose Keppra and so far she seems to be tolerating it. She actually seemed to be able to focus more and was actually interested in playing and interacting today, which is a very good sign. She also did not appear to have any of the strange facial movements that we suspect could be the seizures, but she did cry spontaneously and thrash around a little bit from time to time, for no reason that was obvious to me. I really hate the idea of having to medicate her, especially since we are not even 100% sure that she is having seizures, but we have put our trust in the doctor. Hopefully we will be able to get some answers after the testing next week.

Seizures or Stims? Let the Fun Begin...

Now that we officially have the autism diagnosis, it appears that the "fun" is just beginning. Katelyn originally had a neurology appointment scheduled for the end of February to simply rule out seizures since they can be common in children with autism. When I made the appointment, we really did not suspect that she was having seizures, but we knew it was imperative that we rule it out. However, she has been exhibiting some concerning behaviors lately, so I mentioned them to the doctor at the autism diagnostic center on Monday when she went over Katelyn's diagnosis. She recommended that we get Katelyn evaluated by a neurologist sooner, if possible, since she said that some of the symptoms she is experiencing are concerning to her.

So, being the proactive mother lion that I am, I called the neurologist's office and told them that we could not wait; she needed to be seen ASAP. They gave us an emergency appointment today, but unfortunately it was with an adult neurologist, not the pediatric doctor that we were originally going to see. Regardless, we felt that it was more important to get her evaluated as soon as possible.

We met with the neurologist today and explained the different things we have noticed lately with Katelyn, including strange mouth and tongue movements accompanied by staring spells, crying and confusion, as well as what appears to be regression (she has lost many skills that she used to do independently; for instance, she is refusing to eat unless we physically put the food in the back of her mouth, and even then she will push it out like a 3-month-old does when first learning to eat; she wants to be carried everywhere and will no longer walk down stairs; she no longer has any interest in her toys, TV shows, etc., and basically just calls for "mama" all day long, even when I am holding her; and she will not enter certain rooms anymore.)

The neurologist seemed quite concerned, but admitted that she is not a pediatric neurologist, so she consulted with a pediatric epileptologist from a top Boston hospital. After she explained our concerns to this specialist, he said that Katelyn needs to be started on a low dose of Keppra, an anti-epileptic drug, right away in case she is having seizures. They also will be scheduling her for a 24-hour EEG study to look for any seizure activity, and also to rule out Landau-Kleffner Syndrome. Unfortunately, there are waiting lists to get 24-hour EEGs scheduled, often more than a month, but in accordance with the Boston specialist's recommendation, Katelyn's order was filed as urgent, and we are supposed to receive a call from the hospital within the week to schedule the EEG.

So, needless to say, we are now in the midst of what feels like an autism tornado. It is quite obvious why the symbol for autism is the puzzle piece. Unfortunately, putting together this puzzle, and searching for the missing pieces, is going to be a lifelong project. It's a good thing that Kevin and I enjoy puzzles. Katelyn sure is a mystery, but we wouldn't trade her for the world.

An Oldie But Goodie Movie...

Well, not too old. This is from October 2008, right after we first started to suspect autism.

Katelyn, the Movie Star...

Katelyn's evaluation is coming up soon and I decided to take some videos of her to bring with us in case she doesn't show her "true colors" at the evaluation. She definitely shows more of her stims, etc., at home, which is why some friends and family members who do not see her in her home environment do not understand that she is most likely on the autism spectrum. This is also why it was difficult for us, her parents, to even suspect anything until we really started looking.

I feel that these two videos capture some of her symptoms (certainly not all, by any means) and I am hoping that it will be enough to demonstrate that she is on the spectrum. Some of the things that you will notice on the videos are perseverations, stims, and strange head, eye and body movements. The first video is 8 minutes and the second is 10 minutes.

What We Saw When We Started Looking...

Once we knew what to look for, the signs started jumping out at us. Since she is our first child, we just assumed that many of the signs were typical of a 2-year-old. And many of the signs ARE present in NT (neurotypical) children, but it is when you put them all together that it starts to look like autism.

There are way too many things for me to list here, but here are just a few examples of why we believe she is on the spectrum:

• Significant speech delay
• Occasionally appears deaf; does not react to her name being called; in her "own" world; she stares off into space and "has a conversation" with things that are not there, and she often will laugh at "nothing" and go into hysterics
• Self-stimulations ("stims") -- i.e. hand flapping, finger flicking, toe walking constantly, and other "odd" body movements, as well as verbal stims (suddenly saying, "Car, roll, roll, roll, hot, mama, dada, up, up, up, ding, ding, wow" and pointing all over the place)
• Perseverations (repetitive actions) -- i.e. she has an "obsession" with pointing to the stove and saying, "Hot, hot, hot, hot, hot" over and over. She also likes to go back and forth from one object to another if there is more than one of something
• Extremely visual/detail-oriented -- she will notice the smallest spec of dirt or a spot and become obsessed with it. She also is obsessed with the letter M and will find it in a pattern on the rug, the wood grain of a door, etc. She loves wheels, trains, cars, and clocks also.
• She likes to line up her toys or put them in piles and gets upset if they are not all in place.

Like I said, there are many other things as well, but this gives a rough idea. Before we knew the signs of autism, we assumed that many of her behaviors were just her being a cute 2-year-old -- the hand flapping, toe walking, saying the same word over and over and over and over. But once we started really paying attention, it became very clear.

I then pointed out these things to her Early Intervention team and her pediatrician and they agreed that she needs to be evaluated.

Now That I Know, I Finally See...

I never really knew what the autism "spectrum" meant. When I thought of autism, like most people, I had a certain image in my head of a child rocking back and forth, banging his head, completely nonverbal, having no social skills whatsoever. Many people also think of Rainman; however, he is definitely NOT a typical example of what autism is.

Ever since she was a baby, I always felt like something was "different," especially after we thought she was deaf at 4 months old. She also was delayed in reaching some milestones. She didn't walk independently until 16 months, although she had taken a few steps before her first birthday. She also started talking late, although she "jargonized" and "sang" constantly (she still does!). She was saying Mama and Dada, but not always in the right context...just babbling mostly. She had said "kit" for kitty and had said "car" when we would get in the car, but then she stopped saying both of those words. Her pediatrician told us at her 18-month appt to just "wait it out" until she was 2 years old. She didn't start really saying words until she was 22 months or so, with the help of Early Intervention. She also didn't point at objects until she was close to 2 years old. Still, we never suspected anything other than a speech delay.

Fast forward to October of 2008. Katelyn had her 6-month evaluation for Early Intervention. They noticed that she sometimes took a little longer to process what was asked of her, but once she got it, she sure got it. They suggested it could be an auditory processing delay and that we may want to get her evaluated further. I casually mentioned autism (not even sure why) and they said they didn't think so, but it could be a possibility, so it would be best to get her evaluated.

That night, I went online and started googling "auditory processing delay" and ended up stumbling onto some autism information. I also found an online test on http://www.childbrain.org/, which suggested that she may have mild PDD (pervasive developmental disorder, which essentially means that she would be on the autism "spectrum"). I then began researching more and more and discovered that she had many symptoms of autism. I was shocked. It became so obvious to me and my husband that she had certain behaviors/characteristics of autism.

How was it that we never noticed this before?????? We just didn't know what to look for.

Now that we know, we finally see.

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.