Step 1: Parent Interview at the Autism Diagnostic Center...

This morning was the first step in Katelyn's reevaluation process, the parent interview at the autism diagnostic center. Kevin was up all night sick, so I ended up going on my own. Thankfully, I was also armed with a very informative letter from Katelyn's amazing preschool teacher, explaining in detail how Katelyn's behavior has affected her at school.

I mentioned how far Katelyn has come since her diagnosis in terms of her autistic symptoms, and that, aside from the behavior piece, sometimes it seems like she doesn't even have autism, but the doctor pointed out some things to me that demonstrate that she is definitely on the spectrum, which actually was reassuring to me. (I know that must sound strange, but lately I've been going back and forth on an emotional rollercoaster wondering if she is indeed autistic or if this is something entirely different going on.) She said that although Katelyn has shown significant improvement in many of her symptoms, Katelyn is still exhibiting signs of autism. For example, although her speech has dramatically improved, her pragmatic language is not there, and it sounds to her like Katelyn is sometimes using delayed echolalia and scripting to communicate. She is also still labeling and listing things (for example, I told her how she talks about school and she will go down the list of kids, teacher/aides, etc. "I ready to see Olivia, I ready to see Jason, and Ryan, and Miss Lauren, and Sabrina..."), she cannot have a back-and-forth conversation yet, etc. Also, her social skills are still way behind. She also pointed out that even though she is not flapping anymore, she is turning that into something else, like her fingers overlapping (what I call the lobster claw hand --a strange thing she does with her index and middle finger) or clenching her fists like she is upset or anxious.

In terms of the behavior issues, she asked if we've had a functional behavior analysis (FBA) done before and I said no. She said that Katelyn's behavior is out of her realm (and she's a top expert on autism!) and that we definitely need to get an FBA done as soon as possible. This will involve having a team come to the home and school environments to observe what is going on and take data and attempt to implement some strategies for us to use. She agreed that Katelyn's behavior is very puzzling and hard to figure out. She suggested possibly negative attention seeking behavior, but also recommended genetic testing because some genetic disorders can cause regression like this, especially the all of a sudden not showing interest in previously enjoyed things or activities. I told her that some genetic testing was done around the time of suspected seizures back in Jan 2009 and she said she would like to see the results from the neurologist. She does not think it is a yeast/bacteria issue related to the pneumonia/antibiotics because she said, in her opinion, that there is no way it would last this long. She emphasized the importance of consistency on the part of her parents, teachers, and caregivers. She even mentioned that this is serious enough that if we do not get help for her now, Katelyn could end up having to go to a special school or even in a residential program somewhere, NOT because of her autism or lack of cognitive skills, but because of her behavior. If that isn't serious, I don't know what is. She did agree that it sounds like this is something other than the autism going on in addition to, and probably made worse by, the autism.

So, that is where we are at so far. Now we have to wait until April 1st (date was changed) for her evaluation. I also got her an appointment with a child psychologist for next week, so hopefully she will be able to help us in the interim with how to try to deal with her behavior at home, as well as at school.

Thanks for all of the good thoughts and prayers in this difficult time. I will be sure to keep you all up to date on what is going on in this reevaluation process.

More Than We Bargained For...

It is a good thing that I did not bet money on how Katelyn would respond to getting the electrodes stuck to her head because she did way better than I had anticipated! Of course, she was not happy about it, but after the first few minutes, she did great and no sedation was required. The nurses and doctors were all amazing throughout our stay. They brought in some toys for Katelyn, one of which was a tube with beads that sound like rain when they fall. This became her "go-to" toy whenever anyone was going to mess with her head (no pun intended). She would shout, "Beads! Beads!" and we would quickly distract her with the bead tube. They also wheeled in her very own DVD player so she could watch Dora as much as she wanted to, much to our chagrin :)

Things definitely did not go as planned from the get-go; there were some good and some bad surprises. They did allow Kevin to stay with me, which was a huge relief for me. Even with the two of us there, it was still not easy to be stuck in a tiny hospital room with a 2.5-year-old who demands 24-hour attention from Mama and Dada. The food was obviously not meant for human consumption, so that was quite disappointing. We ended up living on ice coffees and donuts for the most part since there was a Dunkin' Donuts in the building, thank God.

Our 24-hour EEG turned into an exhausting 72-hour EEG because, despite the fact that Katelyn was exhibiting concerning behaviors multiple times a day prior to hospitalization, she did not demonstrate even ONE single event while admitted. Isn't it ironic (insert sarcastic smiley face here). The neurologist wanted to be sure that he did all that he could to attempt to witness any seizure activity, but unfortunately it never occurred. Therefore, we are still not 100% sure that she is not having seizures, but it certainly is promising that she did not show any signs of seizures while under observation. We were really hoping that she would do that strange behavior, even if just to rule out that it is a seizure so we would know for the future, but the good thing is that she has not had one of those events since, so we are optimistic for the moment.

As if being in the hospital for three nights with a 2.5-year-old wasn't enough, the worst was yet to come. Shortly after we put her down for the evening on the last night, Katelyn started throwing up all over herself. Even poor Giraffe got his fair share. She continued to be sick until around 1 a.m., but then finally slept the rest of the night. The next morning, the doctor told us that they wanted to keep her for a few hours after her electrodes were removed, just to be sure that she was okay since she had vomited the night before and there was a GI bug going around the floor. Right as we were about to be discharged, the nurse checked her temp and it was 102. The doctor said that he would keep her if we chose, but we were so sick of being in that hospital that we decided to take her home. Unfortunately, she threw up all over herself in the van when we were only a few minutes from the house.

The next morning, I ended up becoming violently ill, and by that evening, Kevin was also extremely sick. Neither one of us were in any condition to take care of ourselves, let alone Katelyn, but we did what we had to do, even when she woke in the night vomiting again. Luckily, Kevin's parents were gracious enough to keep Ashley so that she would not get sick too. We finally seem to be on the mend now, and Ashley is finally home with us after being at Grammy and Papa's for a week.

So, all in all, it certainly was not a dream vacation, and we didn't get any concrete answers, but at least it was memorable. I'm sure we will look back and laugh at this some day.

Giraffe and Dada got "hats" too...

Katelyn lined up her animals and played with balloons...

With Mama when we arrived/with Dada on the last day...

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.