FOLLOW UP 5/20/12:
Taking steps to understand PANDAS From the Office of State Sen. KEVIN WITKOS “While this bill passed unanimously in the State Senate, it unfortunately did not see a vote in the House of Representatives.”
Original Post:
We have ground breaking news to report! The State of Connecticut Senate has UNANIMOUSLY passed the bill “AN ACT CONCERNING A STUDY OF PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDER ASSOCIATED WITH STREPTOCOCCAL INFECTIONS”.
This bill requires “The Commissioner of Public Health…to do a study on PANDAS to learn how it’s diagnosed and treated in this country and others and an evaluation of the level of recognition of the disorder in the medical community. The report is to be finished no later than January 1, 2013”.
Further information can be found on the State of CT General Assembly website.
Thank you to those who helped this bill become reality, including parents Jim Carson, Lynn Johnson, and all others who submitted testimonies to show how devastating this disorder is.
Hopefully they will also consider the IVIG treatment to be effective and no longer experimental. My daughter is struggling to get this treatment! If it works, it should not be experimental. Let’s get these people the help that they need
I am fighting with the insurance company Blue Cross the denial of the payment of our child’s IVIG treatment… and YES their argument is that it is experimental…
but his WBC (white blood cells) were very low, mainly his Neutrophils never went higher than 600 and the count should be in between 1500-8000 cell count. This was leaving my child in jeopardy, threatening his life minute by minute…
GUESS WHAT??? BINGO!!! AFTER THE IVIG HIS NEUTROPHILS WNT UP TO 2,140 count… now after more than 2 years he is in range… and can fight any disease like any other normal kid or human being.
We live in Florida but it really doesn’t matter we need to get together in this…
I fill so bad for the parents and children that have to go through this terrible,horrific ordeal..
TO YOU INSURANCE CO> “STOP BUREAUCRACY, STOP MAKING BILLIONS OF DOLLARS AT PEOPLE EXPENSES AND FOCUS MORE IN CURING PEOPLE, SVING LIVES”