Friday, November 13, 2009
Wow..I just finished a book called Saving Sammy by Beth Allison Maloney. What a wonderful book. I just joined her fan page on facebook. She is the national spokesperson for the PANDAS Foundation. I am highly impressed by her book and the journey that she and her three boys went on for several years of their life.
Patrick's doctor gave me a verbal diagnosis of PANDAS about seven months ago right before we started the IVIG. I feel like we have really found a link to explore with PANDAS and after reading Beth's book it really shed light on so many symptoms and issues involved with strep infections and PANDAS. I also firmly believe that not only Group A but also Group B strep is involved in these infections.
It was really exciting to read this book. I highly recommend it to all parents who have children on the spectrum.
Overall, we have had a typical week. He was up last night and couldn't sleep very well but is really seeking me out for attention. Which is always a great thing!
I will share more PANDAS information as I do a little more research. I knew that the IVIG would help treat it but there is so much more to the whole issue. Patrick has his 7th IVIG this week in Nashville so be sure to keep him in your prayers.
Tuesday, November 10, 2009
We have seen some great language gains lately with Patrick.
He will be completing his Seventh IVIG treatment next week in Nashville with Paige Adams. He started using the HBOT again and we are getting in a consistent regiment. I also used Nov 1 as the date for really making sure that everyone who is with him was making sure that his GF/CF was really tightened up with no slip-ups.
I have to credit these bio-medical interventions for his gains in unprompted language. He also appears to have better cognition too. I inserted a photo from Halloween (he is the little fireman) and he was so excited the week before Halloween! He kept asking me about "trick or treat." He has never shown an interest in this before.
Last night, he told his sister and I that Angel (a german shepherd we have) is "Packy's dog" and "first dog" which he eventually put together as "Packy's first dog." When I asked him "who is Packy's first dog?" he promptly told me "Angel."
The only thing about this that didn't excite me is that Angel is for sale as a therapy dog. :) Her mother is our long time therapy dog so I started getting him to name and talk about some of our other dogs. But we shall see. :) Anything for our kids, ya know?
Saturday, November 7, 2009
When I first found out Patrick had autism....or actually, way before I found out officially, I became the queen of Internet research. I looked up everything possible, had large notebooks running with strange diagrams and charts drawn that only I could understand. I bought books from Amazon by the large box full. I read and watched...learned, sought out information, learned some more.
Some where around Year 4 into the learning experience, I became burnt out. Wasn't sure if what I was doing was the right thing to do or where Patrick was really at in his program. It has taken me a couple of years to get over this burn out.
Hopefully I have shaken it off. I just got some great new books in the mail, am following some great Twitters on autism, and basically researching new things and keeping my eyes and heart open for the rainbows and forgetting about the storm clouds.
We are back to looking into Stem Cell therapy either in Costa Rica or Germany. We are also tough on our diet and recommitting to some serious time in the HBOT. Patrick also started massage therapy two weeks ago and I can already see some positive benefits from it.
My greatest hope for Patrick is to be a happy and healthy little boy. I feel like the health is such a big improvement already...so many gut issues are finally cleared up after years and I feel like treating the PANDAS has and is continuing to make such a huge difference.
As we look into Stem Cells and other options I will continue to keep everyone posted.
He attended his sisters 8 year old birthday party a few weeks ago and got to roller skate for the first time. He did so great too!!! I just had to include this photo.