Wednesday, July 30, 2008

2 weeks

Today marks the 2 week point of our little experiment! Today also marks the day she goes from half a pill to a full dose - oh boy! I can now say that I am not imagining the changes in our daughter. She is using far more words and is more interactive with us. When I say interactive, I mean of her own choice! We are not forcing the interaction, she is seeking it out. That is new. Other things that are new - she will say 'thank you' to me without prompting. When I enter her line of vision, she will say "hello Mummy", again without prompting. Last night, she blew my mind!

I tucked her into bed and left the room to get something. When I came back she was lying her bed reading her book. I had a basket of laundry in my hand and went to her closet to put her clothes away. When I came back out, she asked me "What are you doing?" I said, "I just got done putting your laundry away, now I am going to go and make a cup of tea" Then I realized that she had asked a question so I asked her "What are you doing" and she thought for a second and then said "I am going to go to sleep, goodnight" Oh it was a beautiful thing!

Other people have noticed things too. A neighbor came to the door on Sunday and Alex greeted her with a "Hello Miss Jo" which is something she would never have done before. Before, she would not even have acknowledged her existence.

So it is still early days, but I am feeling happy and optimistic right now. We shall see what happens now she is switching to a whole dose. I hope she can handle it!

Stay tuned

Monday, July 21, 2008

5 days!

It has been 5 days since she took her first pill. When I say 'took her first pill' I mean had her first pill shoved down her throat while she screamed, punched and basically fought with the strength of a thousand men! By day 3, it was impossible to get the half pill anywhere near her. After much trial and error, my husband finally hit on something that has worked thus far! Crushing the pill and sprinkling it on a thin layer of Marmite and then covering it with another thin layer - she licked that stuff up!

Apart from the actual pill taking, it has been hard for me to gauge any differences in her. I believe I see them, but I know I am more than a little susceptible to a placebo effect. I hear more words and see more interaction, but is it really there? Or is it just wishful thinking? I have not told any of her teachers that she is taking this medication so I am hoping they will be better able to detect a real difference in her.

So that is where we stand right now. She is at summer school right now and seems really happy to be attending. Probably not as happy as I am, but happy nonetheless!

Oh and if anybody has any idea on how to get an autistic child to take a pill, please send them my way!!

Thursday, July 17, 2008

A New Adventure

It has been a while since I posted anything on this blog. I think I find it hard to write when there seems to be nothing super exciting going on. However, if I was to just wait for big stuff, I would be missing out on all the little tiny minutiae that makes up a life with Alexandra. She has so many fabulous little moments during the course of a day.

That being said, I do have some major news to write of and it has been some time in the making! A little backdrop:- more than 3 years ago, Alex went to have a hearing test at Portsmouth Naval Hospital in Virginia. They wanted to ensure that her hearing was ruled out before they gave a complete diagnosis of autism. They also needed to do this under sedation as they could gather a more accurate test that way. After repeated attempts of putting an IV into her failed, they asked permission to use ketamine which would calm her enough to allow the IV to be put in. We agreed, the test was done and after an hour or so, we got to take her home. The strangest thing happened the rest of that day. Alexandra was not autistic! For the rest of that day, the she was social, happy and talking like she had never done before. The fog of autism slowly returned but for 24 hours, we had a daughter that was not autistic. I reported this to her Developmental Pediatrician who was excited and told me she would research this and let me know any findings within her community! Years go by and we are now on the West coast. 6 weeks ago, this Doctor tracked us down and called me. It was more than 2 years since she had seen Alexandra but she had never forgotten. She called to tell me that she had finally found a study that matched the experience we had had with the ketamine. She sent me all the research findings, the medicine information and told me that I would have to get our new Developmental Pediatrician on board. This would be no mean feat as she errs on the side of caution when it comes to medications.

Long story short (or shorter than it could be) after much research of her own, our Doctor prescribed Alexandra with a drug called Namenda and she took her first pill yesterday. The study on this is amazing and it is so hard to not let myself get caught up in the possibilities. This has so much potential but I know I have to stay on an even keel and not get too ahead of myself. So that is where we are at right now. I am going to use this blog as a diary and a way to report anything that happens while she starts off on this adventure! I will post a link to the initial study later today but I need to go get the lovely lady ready for school - god bless summer school!

Stay tuned!