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.

The Verdict Is In...

Kevin and I met with the doctor at the autism diagnostic center today to discuss Katelyn's official diagnosis. She has been diagnosed with Autistic Disorder (classic autism), and she is considered in the moderate range right now. In order to be diagnosed with autism, a child must meet 6 of the 12 criteria, and Katelyn met 9 out of 12. However, the doctor did explain that meeting more criteria does not necessarily mean that the child is more severe; it depends on which of the criteria is met.

The doctor feels strongly, as do we, that Katelyn will be very successful with intensive therapy (25+ hours per week, including ABA, speech, OT, and more), and that she will most likely improve significantly. She said that she would not be surprised if Katelyn is considered mild within a year.

What happens now?

The next step will be getting her set up, through her current Early Intervention provider, with a specialized team that will provide the intensive therapy. When Katelyn turns 3 in July, her services will then be provided through the public school system. When I asked whether Katelyn would be in a regular pre-school classroom with an aide, the doctor explained that, because of her speech issues, Katelyn would benefit most from a 1:1 or 1:2 ratio, and then once her speech improves significantly, she could be integrated for part of the school day in a regular pre-school classroom with a 1:1 aide. I also asked about what will happen over the summer since she turns 3 in July, but pre-school does not start until the fall. The doctor said that Katelyn will need to receive year-round services (so there will be no gaps in her therapy), so she will need to be involved in a summer program through the school as well.

The doctor also highly suggested that Kevin and I become involved in a support group for parents of autistic children, which is something that I plan to look into further. I already frequent an online support forum (www.autism-pdd.net/forum), which has been unbelievably helpful.

Thank you to everyone who has been following my blog. This is going to be a lifelong journey for us, and having friends and family (and even internet "strangers") who offer support, experiences, hugs, and more, really means the world to us.