Wednesday, June 10, 2009

The Doctor's Office

Call me crazy but I actually went to the doctor for ME today.  As I handed over a fresh 20 to the receptionist, I listen in on  2 pharmaceutical reps pumping each other for information in the waiting room.  Irony.  I fantasized handing THEM my $20 co-pay instead.  Then I scream at them in a Michael Moore fashion how they are ruining our kids.   Then walk out.  That was a nice 30 seconds.  

Tuesday, June 09, 2009

CT Behavior Therapy Bill Passes the Senate

Waiting on the governor to sign this bill and the HB 6200 Lyme bill.  This is amazing news! Pretty surreal to think that insurance would finally cover it.  Maybe the world isn't as insane as I think it is.  My two worlds have collided - what an interesting time.  On her desk the fate of my past and the fate of our future.

Autism Speaks last night joined Connecticut families and other autism advocacy organizations in applauding the members of the State legislature for passing Senate Bill 301, which requires insurance companies to provide coverage of evidence-based, medically necessary autism therapies. The bill was passed late last night in a vote of 140 to 2 and now heads to Governor M. Jodi Rell’s desk for signature into law.

The Connecticut bill requires insurers to provide coverage for behavioral therapy up to a yearly benefit of $50,000 for a child who is less than nine years of age and $35,000 for a child who is at least nine years of age and less than thirteen years of age. The bill specifically covers Applied Behavior Analysis (ABA) therapy, which is recognized as an effective, evidence-based treatment for children with autism. SB 301 was sponsored by State Senate Majority Leader Martin M. Looney (D-11) and Speaker of the House Christopher G. Donovan (D-84).
We specifically want to thank Senator Joe Crisco, Senato r Jonathan Harris, Senator John McKinney, Senator Len Fasano, Representative Lawrence Cafero, Representative Themis Klarides for their herculean efforts on behalf of this bill and all those touched by autism. We ask each of you if you have a moment to thank these members. To learn more about this historic bill passing and how to contact local representatives visit

Sunday, June 07, 2009

End Of School Year...Almost

It seems forever since I've posted anything.  Leo can't wait for school to be over!  Things are status quo, really even keel and life is good for my sweet boy.  True, nothing is perfect, and for him his parents are pretty taken up by his sister's Lyme disease.  But all in all, things are great.

Leo's friendships are even deeper and more meaningful with the same boys he's known for years in elementary school.  They talk a lot about nothing, kind of like Seinfeld.  It's really cute and so grown up.  He had a sleepover recently, and for the first time I could tell he didn't share everything that went on, especially their talks before bed.  I see that the world sees my baby boy differently as well.  Other Dads will see Leo and say "Hey what's up."  The restaraunt hostess won't give him a kids menu.  

He's had a great baseball year in AAA.  He is known to pitch well and is now a strong batter.The games seem a little bit more exciting than last year.    His coaches are amazed how he can keep his composure, even when they've switched pitchers, bringing him in to "close" an inning if the bases are loaded.  Must be that linear mind of his. 

I still don't have the stomach for sports because I still remember how much harder everything has been for him and how far he has come.   I worry when something big changes, or if it rains or if the field changes how Leo will handle it.  So far so good.  He has turned out to be very confident and upbeat as a player.  He is known to rile up his teammates, getting them clapping and cheering when they are in a slump.  Emerging leadership qualities (both his teacher and his coaches have said this more than once).  

Leo is amazingly even keel throughout a garden variety day.  No peaks and valleys as in the past.  Ideally, "quiet time" as a break in the afternoon (on weekends) and regular snack breaks would be nice, but we are no longer owned by them.  Maybe not as even throughout the day as the next kid, but very close.  I am sure my kids still go to bed earlier than most (8:30pm??) because they'd certainly fall apart if we regularly kept them up after that.  He can go without a break all day and stay up late and even eat late with no consequence.  

We continue to be strict with food at home (GF, organic, whole foods) and with lunches, but when we are at parties, sleepovers, field trips, or at friends houses I let him partake and make his own choices.  He is very compliant with his supplements so I honor his good care of himself with this.  And his body can handle it which continues to amaze me.  The only difference I insist upon is having a snack during a field trip - going from 8am to 1 or 1:30 with no food is just idiotic.  

We determined finally through testing that another bacteria, Mycoplasma Fermentans is a causative factor to Leo's minor tics that wax and wane along with the Strep we've been addressing.   This knowledge has made a big difference since we are able to target this bacteria through Rifing.  I am sure Lyme is in there somewhere, but for now it as a manageable level. Perhaps we caught it early enough through Rifing. I continue to use blended homeopathy and nutrition support for detox and die-off from Rifing.  A night and day difference from the winter where they got so bad.  

Leo has also been a trouper when it comes to all the attention Sydney has required this past year.  It hasn't been easy for him.  He has an almost adult-like understanding of the big picture of chronic illness and has empathy for us and for Sydney.  He could easily be the kid that you could ignore and he'd plug along doing the "right thing", his chores, his homework, etc.  I appreciate his steady character and maturity in handling his irritable, emotional, and sensitive younger sister.  So, I try to make an effort to spend special time with him, which doesn't always work out as the pill-pusher  chief medical officer of Sydney.  One day I'll make it up for him.  

Globally Sydney is better but has a long way back to recovery.  I can only hope that she can get there.  Applying what I've learned from the Autism battlefield has helped exponentially that's for sure.  

My DH is still out of work.  We are hopeful that he will find employment back on the west coast away from endemic Lyme areas.  I welcome bad air, bad water, and a higher cost of living with open arms.  I say bring it!  (Sure that may be dated slang but I just love it).

As for me, I am all about Lyme.  Lyme Lyme Lyme.  So many kids are not diagnosed and undertreated.  Yet another category of illness that makes up the now typical fabric of the American classroom.  

For "fun", a fellow Lyme mom and I took out the class directory and counted how many "regular" kids there were in 4th grade.  Between the 2 of us, we knew every kid.  I have a boy and she has a girl in this grade, so we really had it covered.  There are about 108 kids - an average of 5 per class of 22 had no health or learning issue.  I mean asthma, allergies, learning disability, ADD, ASD, OCD, diabetes, obesity, Lyme Disease, P.A.N.D.A.S. like disorder, Psychiatric disorder, Behavioral disorder, or some other IEP related issue.  

Just 5.  FIVE KIDS on average that had no problems.  The next day I stared at this very group during the Spring Recital.  There they all were, all lined up on stage singing.  I started to tear up but not for the reasons most people would think.  A picture of health?  No, a scary, devastating picture of the future.