Winter Update

Hello from our mini Winter wonderland here in Waxhaw, NC! We got a piece of a winter storm that passed through this weekend. Not much snow to speak of, but we did have some sleet and freezing rain. It was just enough to cover the ground so that the neighborhood kids could go sledding on the little hill across the street from our house. Adam and Charlie went sledding yesterday for a bit.

We've had a busy 3 months since my last post. We had a fabulous Christmas this year, celebrating with Adam's family in Ft. Wayne, IN. We finally got to see Che Jacobs (aka the new house on Big Long Lake). It is just beautiful, and we really did not want to leave. :) Charlie and Addison just love spending time with their big cousins George, Alice and Sophia. Charlie, in particular, has always taken a liking to George. Addison was quite smitten with Alice who just showered her with attention. (A sure way to win over Addison's attention seeking heart.)

Over all, Charlie did seem to be excited about Christmas although he never spoke about it (beyond a few attempts at singing what sounded like Christmas carols). He did a great job at sitting through church on Christmas Eve and enjoyed a few of his presents, including an array of sensory balls and a slinky. However, he was not a fan of opening presents. In fact, it seemed to almost upset him or make him nervous at first. He got more used to it, but never got into the act of ripping open wrapping paper. Guess it just makes life easier for me for future gift giving occasions if I don't have to wrap. :) Addison was more than happy to open presents her big brother did not care to open himself, as you can imagine.

Charlie has continued to do well at his (not so) new school. He is now sitting through circle time all on his own. In the past, he had to be repeatedly prompted and reinforced to sit through circle time. Now, he has learned that this behavior is expected and does so all on his own. That's a big development for us! He has even clapped along with music all on his own as well. Another big and exciting development for us. To me, this shows he is more aware of his surroundings and what is expected of him in a school environment. He's doing really well, and I am very proud of him.

Charlie's tummy issues are much better now. For the first time in a long time, we are seeing some solid BMs. After the last OAT test, we were delighted to see that Charlie's clostridia levels were in the normal range. We are still working on potty training. He will pee in the potty, but no poop yet. And, to be frank, he will just as readily pee in his pull up as the potty. So, we have to try to stay on top of him and put him on the potty regularly if we want to go an extended period of time with a dry pull-up. I have been reading a little about potty training a child with autism. I'd like to work on this over the summer when Charlie will be home with me a little more. It is not going to be an easy task.

In the last month, we have added some homeopathic remedies into our treatment protocol. I met a wonderful doctor of natural medicine through a local on-line autism web group. She contacted me for some legal advice. At the same time, I was reading up on homeopathic and natural remedies so I was very interested in her practice. She recommended some new supplements for us. We started 3 new ones -- GabaFlo, AcetylFlo and NeuroTrans Active. All of these are sprays which we spray in Charlie's mouth 2-3 times a day. We have seen some changes since we started these supplements, most notably an increase in language. Granted it is mostly echolalia, but I'll take any increase at this point. His teachers at school even commented that he was more talkative than he had been. (Apparently he recited a line one of his teacher's likes to use quite often: "That's the bottom line." Around our house, he repeats "That's enough" and "Knock it off" which are two things I say daily around here.) He has also spontaneously requested things like "water" and "chip." A couple of times it really sounded like he said "thank you" when I handed him something to eat or drink. His pronounciation is not always clear so sometimes it is kind of hard to tell. But, it gets a little clearer every day. However, we have also seen some increased stimming, mostly spinning. This isn't too surprising as any new supplement can cause increased stimming or other behaviors until you get used to them. So, for now, we will just keep our eye on the frequency of the stims.

We are also extremely excited to be starting HBOT tomorrow!!! We have wanted to try HBOT for some time now. When Charlie was first diagnosed, we took him to see a neurologist on the advice of the developmental pediatrician who diagnosed him, mainly to rule out any seizure activity. The neurologist recommended HBOT as a helpful treatment. Also, Charlie's DAN doctor highly recommends it and actually runs a HBOT clinic out of his office. The downside is that HBOT is EXTREMELY expensive, average of $90-$100 a "dive" with 40 dives each round being typical. So, you're talking about $4000 for a round of HBOT, and usually repeated rounds are recommended. It's a very promising therapy, but it's a hefty price to pay, especially when there is no guarantee your child will respond to it. But, as fate would have it, the doctor that I met has a hyperbaric chamber in her office and is going to allow us to try this treatment for Charlie. I cannot even express how grateful we are and how lucky we feel to have met this woman.

So, Charlie starts HBOT tomorrow. Either Adam or I will have to go in the chamber with him as, almost certainly, he will not want to go in there by himself (and certainly will not want to stay in there for an hour by himself). In the beginning, it is recommended that Charlie go every day if possible for the first 40 days to see if he responds favorably. So, we are going to try to make this happen. It won't be easy juggling Charlie's school and therapy, a feisty 2 year old, a husband who travels a lot for work, my meagher work schedule, and traveling up to Cornelius for HBOT. . . but we are going to make it work!!! My mom is coming down this week to help while Adam is away. The second week of February, Adam's mom will come down to help out, and the next week Adam's dad will be coming. We couldn't do this without our families so we are, again, ever so grateful.

I am anxious to see how or if Charlie responds, but I am cautiously optimistic. I know not all children respond, but many do. And, like other interventions, some respond in dramatic ways while others show only small improvements. You never know until you do it. I am just so glad that we get the chance to try this therapy for Charlie as many parents never get the opportunity. Please keep your fingers crossed for us and say a little prayer. We'll keep you posted on our progress.