1st Round of HBOT down. . .

Whew. We have been a busy crew over the last 40 or so days. As my previous post indicated, Charlie started HBOT on February 1. What an interesting experiment it has been. Of course, because he is so young, either Adam or myself had to do every "dive" with him. Since Adam is working and traveling during the week, I did the week day dives, and Adam covered the weekend shifts. We tried our best to do 40 days in a row, but did have a few missed days due to illness, weather, etc. Over all though, we stayed on target very well I think.

The first few dives were interesting for me. As you can imagine, being in a small, confined space with a very hyper 3 year old can make for challenging times. There weren't a whole lot of things for Charlie to play with in there, so he took to "playing" with mommy. I got poked, scratched, pinched, kicked, rolled on, kneed in every possible part of my body. Needless to say, it was no fun for me the first couple of times. . . except for the rare moments when Charlie would calm down and let me cuddle with him.

But, after a few dives, Charlie got the hang of it and even started sleeping through most of them. I must admit, part of me looked forward to our daily HBOT dive, because, if Charlie was asleep, it meant some assured down time for me to either just veg, or, usually, to read. Like most busy moms, I don't really do down time. However, when you are laying in an HBOT chamber with a sleeping 3 year old, you have no other choice.

Near the end of our 40 sessions, I took Addison in with us when I had no one to watch her. That is an exercise in patience if I have ever had one. She was ALL over the place. . . and ALL OVER ME. After about 10 minutes she was asking to get out and then crying because I told her we could not get out. She did get better, but I earned my mommy salary that day. She will be going back in with us for the second rounds. . . I am feverishly searching for our portable DVD player so as to have something to distract my busy little 2 year old.

So, on to the most important part of this post. . . what changes have we seen since Round 1 of HBOT??? Well, I think, quite a few. Most notably, we have seen a nice increase in language. And, more importantly, appropriate use of this language. Sure, we still have lots of random repeating and words out of context, but increasingly more appropriate use of words. For example, and perhaps my favorite, Charlie has been using "oh shit." Okay, oops. . . that is my fault. BUT. . . he uses it appropriately. One day, he dropped some grapes in class and said "oh shit." As his teacher said, he certainly won't be getting into any trouble for using appropriate language. . . no matter what that word may be. That same day he also stole another student's shoe and made the little boy cry. Charlie started crying, too and said "I'm so sorry." He has also manded (or requested) lots of items, particularly food items, such as "waffle," "chip," "baked beans," "melon," "juice," and "water." His echo has gotten stronger and he will repeat more things he has heard right after he hears them. On another occassion, he told the secretary at the school's front office "good morning" right after she said it to him. In addition, he mands with signs more frequently. He most often signs for straw, chip or sandwich. This is the first time I've really seen him sign without having to be prompted for it first. What I consider to be a HUGE development for us, Charlie has answered a few questions with "yes" or "no." This is a very big deal, because it is the first step to conversation. He acknowledged he was being asked a question, and answered it. This is not an easy concept for lots of people with autism. (Come to find out, he has also answered "yes" in class -- when they asked him if he wanted to wear his squeezy vest).

I was very excited a couple of weeks ago when we went to the park one day after school. It was a beautiful day, and I had a major case of Spring fever. At first, Charlie was quite upset. I'm not sure why except that I knew he was very tired. I think he may have also been confused about why we were at the park and not at HBOT since this had become the routine. He calmed immediately, though, as we started walking. We made our way to the playground, and as I pulled the stroller up to the play area, Charlie started wiggling and trying to get out of his seat (he was strapped in) saying "go slide, go slide!" Let me tell you, I could not get him out of that seat fast enough so he could "go slide!" Then, while at the swings, he heard one child tell his father "go faster" and he turned and immediately repeated the phrase to me. I was pushing him as fast and as hard as I could to oblige him and encourage the use of language. It was a good day, even if Charlie was quite agitated . . .the park was very crowded and a little overwhelming for him that day.
He also just seems to be more aware and in tune. He listens fabulously to instructions and seems to understand everything that is said to him. On at least two occasions when I asked for a hug/kiss, he put his lips out to mine and threw his arms around me, as opposed to the ol' lean in of the body to let ME hug him. (And, believe it or not, the pucker manuever to kiss someone is quite hard for many autistic children). When he did that, my heart felt like it would leap right out of my chest.

We have seen some other changes, too. Some not quite as good. Mostly, increased hyperness and stimming. We were told to expect this, and everything I read also indicated this was a possibility through the first few dives. The first couple of weeks, Charlie was spinning A LOT. And we definitely saw increased laughing spells, night waking and "jibber jabber" (the constant background talking Charlie can do at times). This did get better over the course of 40 dives, but it did remain an issue, especially the sleep, or lack thereof. Charlie has taken to getting up at 4:00 a.m. at least 2 or 3 times a week.

I also feel like we saw increased moodiness and fussiness. I'm not quite sure what is going on here or how much it may or may not be related to HBOT. Or, is it just that Charlie is becoming more aware of his surroundings and realizing how hard it is for him to communicate?? His teacher thinks it may just be a natural progression and not necessarily a bad thing, and, in fact, a good thing. That may be, but it ain't easy to deal with. He gets frustrated more easily now, and seems to be more vocal about it. In fact, one night he downright scared me. It was bed time, and, as usual, I was having a hard time keeping Charlie in bed. He came out of his room, and I caught him trying to climb up in our bed. I sternly told him "no" and he screamed/growled very loudly while running at me. Louder and more intense than I had ever heard him do before. He ran to me, but immediately put his arms up so that I would pick him up and comfort him, which, of course, I did. He was absolutely trembling like he was scared to death. I'd never seen anyting like this before with him. I walked him back into his room and talked to him. He seemed to be freaked out by his aquarium night light so I turned it off. The trembling subsided and he went to sleep. I, on the other hand, was freaked out for the rest of the night and could barely sleep at all.

The next night, I could not get the child to go to sleep for the intensity of his giggling fits. He sat in his room and laughed non-stop and, for the most part, uncontrollably for over an hour and a half. I have seen and heard many giggling fits over the last year or so, but this one was different. I went in to tell him to quiet down, and I couldn't get any words out over the loud giggling. It may sound like it was cute and funny. . . but it was anything but. It was downright freaky, to be honest. I still have no idea what that is about.

Just over a week ago, I received a call from Charlie's teacher one Friday morning. She asked if Charlie had a history of panic attacks. My immediate response was "NO. WHY???" She told me that he had been at the table eating snack. He was very happy, eating a yummy snack and holding a straw (which, for those of you that know Charlie, you know how much he loves straws). Out of nowhere he started pouring sweat and got very red in the face. She said it sounded like he was hyperventilating, and she actually got nervous that he was choking. He started to scream loudly over and over. She said it sounded like he was in pain or being tortured. Other teachers came in and saw what was going on. None had ever seen anything like it. . . and this is a school and group of teachers that are experienced with autism and have seen many seizures and strange behaviors. Once the screaming stopped, he was dazed and confused, like he didn't know where he was for a while. When he "came to," he started saying "daddy, daddy." He had 2 other minor spells where he seemed to get agitated again. I was freaked out about this, but, I admit, at first I thought it was just another tantrum of some sort. Until I called the doctor.

The doctor started asking me all of these specific questions and, after I told him everything I knew, he said it sounded very suspicous of a seizure. I went online and, unbeknownst to me, it's not uncommon for people to scream bloody murder when they are having a seizure or, for that matter, giggle uncontrollably.

Naturally, my mommy brain just started spinning out of control at this point, now feeling assured that my child had at least one seizure. (I don't think the giggling incident was a seizure because of the long duration and, more imporantly, because he was totally aware and did everything I asked him to do during it. He just laughed the whole time. Nevertheless, it will be discussed with the neurologist.)
I asked the doctor if HBOT could be the cause of the seizure. I had read that HBOT may not be recommended for children who have seizures because it may increase the frequency of the seizures. The doctor said he had never heard of mild HBOT (which is what we are doing) contributing to seizures in any way, and he does not think it is related. He did, however, think it was possible that our evil nemesis, gluten, may have been the culprit. (Not a certainty, but he said he has seen gluten cause seizures.) Charlie had gotten hold of gluten (a roll and a cupcake) the previous Saturday at a party. I swear, the child can sniff it out from across the room and makes a beeline for it. I was planning on doing another gluten challenge next month, but I decided we'd just try it early since Charlie had helped himself. So, that entire week he got gluten filled products -- regular pizza, regular chicken nuggets, etc. And, in fact, we did see strange behaviors all week. I admit, I still have a hard time wrapping my head around the notion that gluten could cause all of this, the increased tantrums, giggling, seizures, etc, but ya just never know. Needless to say, gluten has been removed once again.

I called around frantically on Monday to make an appointment with a neurologist for an examination after Charlie's seizure. (This was after a weekend where Charlie slept every night in our bed because I was too afraid to leave him alone all night.) The first available appointment I could get was October 1!!! Yikes. . So it is with the unbelievable rise in autism that the pediatric neuros here are booked out for MONTHS. I did talk to the nurse. She made me feel much better. She told me it is not uncommon for children to have one seizure and then never have another. If he were, by chance, to have another, we were to go straight to the ER and the doc on call would see us right away. She said one seizure does not raise a red flag for the doctor, but two, and they start wondering what is going on. We spoke a little more, and she sent me some paperwork to have Charlie re-evaluated for ADHD. She also said I would be placed on the waiting list and would likely get in much sooner than October. Let's hope.

So, all in all, it's been an extremely busy time for us. Between taking Charlie to school, OT and HBOT, (and my very meagre work schedule) I practically live in my car. But, I am not complaining because I feel like we are doing the right things for our little man.

Our second round of HBOT starts this Tuesday. Once again, we are going to make every effort to go 40 days in a row (or as close to that as we possibly can). I am so proud of the things Charlie has accomplished in this short span of time. I look forward the endless possibilities.