Next Sunday 11/13 marks the 1-year anniversary of the extraordinary successful community fund raising event where we raised all the thousands of dollars we needed for Lance’s IVIG treatment. It has been a miracle year of healing for Lance and he is doing so very well, the treatment literally saved his life and opened up an entire new trajectory for him and for me.
It's so hard to believe its been an entire year since Lance received the IVIG treatment. It has really taken this entire year for the treatment to settle in. We had the expected ups and downs and a major symptom flare over the summer months that totally stressed us out for awhile, until I remembered Diana Pohlman telling me something about kids having major flares somewhere around 6 or 7 months post-IVIG. Just knowing that helped us to get through it expecting the symptoms to abate, which they have for the most part.
To put it in Lance's own words (more or less...) "It's not that I never have tics anymore, its just not foremost in my life anymore". How HUGE this was for me to hear, because it had been foremost in our lives for years, sucking up all the life we had, dealing with the tics and all the other PANDAS symptoms and issues all those years. So now, Living Life is foremost in Lance's life. And that is so excellent.
And here is a testimony to the improvement of Lance's PANDAS - last week he had a strep throat (positive rapid strep test) with a fever and the whole thing, except - he had no Major PANDAS symptoms flare. It was extraordinary. There were no major tics, OCD, worry and anxiety and sleep disruption and bad moods and terribleness although i was prepared as soon as I saw the glazed over feverish look in his eyes. No, there was none of that, except there was some behavioral regression and baby talk, alot of baby talk, for a couple of days.
What are we still working on in terms of Lance's health? The GI problems, mostly. The very severe celiac disease wrecked havoc in Lance's intestine and we believe he has some intestinal adhesions that create pressure whenever he eats anything. We have been doing alot of deep abdominal and visceral work with Lansing and Jane Gresham at Integrative Awareness, and it appears to be helping. The constant use of antibiotics makes it hard for the intestine to fully heal up. This is why i had taken him off the antibiotics for a couple of weeks before the strep throat, just to give his gut a rest from it. I won't be doing that any time again soon.
As we head into the 2011 Holiday Season, I am counting my blessings.
I continue to be so very grateful for the both the extraordinary network of parents and parent bloggers who are literally up all night on the internet looking for answers and helping each other find answers; for Diana's tenacity, courage and constant support through pandasnetwork.org; and for the unprecedented integrative medical care by Dr. Schweig and staff at Hill Park where I am incredibly honored and fortunate to be working. I believe that it is because of the kind of comprehensive medical care Lance has had - treating the entire child and not just the PANDAS - that he is where he is today. Plus I am grateful for all of the children and PANDAS treatment providers that have come before us and continue to break ground.
This weekend was the FIRST EVER PANDAS PARENT MEETING in Indiana. I will do a separate posting about this amazing event. I really believe that we the parents are the ones driving the medical system to diagnose and cure our children, and that we have to push on for policies that support this. More to come, very soon.
THANK YOU TO EVERYONE who cares enough to read this blog.
Please consider making a small donation to either www.pandasnetwork.org that serves as an information clearinghouse and conduit for the many PANDAS minds to meet up, or to Lance's Fund (on the right side of this page) which is used 100% as TREATMENT DOLLARS for PANDAS children receiving care at Hill Park Medical Center.
More to come soon. Happy Holidays.
With Love
Amy
