Williams treatment and medical expenses

William B. Annin is my eight year old nephew. He is an intelligent, caring and playful boy who loves to build model airplanes and legos and teach younger children how to make things.

William is experiencing physical and neurological symptoms which doctors cannot explain, after trying all remedies. His psychiatrist believes he might have PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), due to some new and re-occurring symptoms that are linked to PANDAS  and recommended he see doctors who are experienced with this and related disorders, and take further action from specialists.

PANDAS is a newly-discovered disorder. Many doctors are unfamiliar with it, which is making diagnosing and treating William very difficult and prolonged. His symptoms are worsening each day. William needs to see doctors who specialize in PANDAS and other neuropsychiatric disorders so he can receive the correct treatments, and start to lead a \"normal\" life.

The treatment for PANDAS is called IVIG treatment (Intra Venous Immunoglobulin) which is a type of infusion that helps the body's immune system. This treatment is very expensive and often children need more than one treatment, with additional follow-up treatments. The average cost is between $5,000"“$10,000 per treatment.

A 30-day shot of Penicillin was given to William after testing 99.9% positive on a Rapid Strep Test. The tics slowed down for one day and immediately started back up with other tics presenting themselves, as well as Separation Anxiety and mild age regression. There is one other form of treatment which is steroids. \"Steroid burst\" (used to test possible future effectiveness of IVIG) tend to control PANDAS symptoms effectively brings it into consideration as a possible treatment for PANDAS. Since the short-term steroid treatment only controls the symptoms temporarily, the prolonged use of it might have rather serious side effects - corticosteroids have not been (and should not be) used as a treatment in PANDAS.

In a carefully selected group of patients the effectiveness of the IVIG treatment in PANDAS patients appears to be excellent. There has been experience that a complete and lasting recovery can and should be expected within days or weeks following the treatment in 90% of patients. Unfortunately the serious drawback to this treatment is its cost and the fact that many insurance companies have not covered it until just recently. It is a very controversial disorder and treatment plan with many people shying away from it.

PANDAS can be caused by untreated Strep infections, where the typical Strep symptoms are not present. William had a Rapid Strep test that came back positive and a throat culture that showed past history of infection that went undetected. His most recent blood test came back with two abnormalities consistent with PANDAS.

In May 2011, William began experiencing motor dysfunctions, also known as "tics" or involuntary and uncontrollable muscle spasms where his leg crosses over the other whether sitting or when walking. He has issues with bed-wetting, day time accidents, behavioral problems, separation anxiety and defiant behavior. His tics have begun to worsen- he has recently developed a "body bounce" which causes his midsection to jerk forward, and also diaphragm tics that affect his stomach and breathing. And now into his eyes with \"hard blinking\". This means the infection has most likely traveled to his brain and/or something is not reacting correctly in his basil ganglia.

William has been to many doctors, psychiatrists and neurologists. He has undergone an MRI and Echocardiogram (ECG), been in and out of Immanuel Medical Center for evaluation twice, become a lab rat for two different anti-psychotics that are not safe for children. He has been diagnosed with BiPolar, PTSD and Oppositional Defiance Disorder (which all link back to PANDAS) but by different doctors, who disagree on each others observations. He has been diagnosed with many different things that are not explaining or matching up to his symptoms. Every week the diagnosis changes, which means that every week William continues to suffer and the proper treatment is not being taken.

After exhausting all steps to find an answer, our next step is to see a specialist that offers knowledge and experience with this disorder and others similarly related who is not located in Omaha to find out (and treat) what is causing this to happen to William. If the treatment works and the symptoms vanish, then it\'s obvious that PANDAS was the underlying issue. But we can\'t find out for sure until William sees these specialists for tests and treatments.

William needs to see doctors and specialists who have experience working with children with PANDAS and other pediatric neuropsychiatric disorders. These doctors are located out of state. William lives in Nebraska, and the  PANDAS specialist lives in Illinois.

William's mother Julie is a single parent currently receiving zero assistance from William's father. In the past she has received child support occasionally but has only gotten TWO payments of support in the past two years. She has had to take FMLA time (Family Medical Leave Act) from her job. FMLA does not provide the employee with any income, but provides the security that her job will be there when she returns to work. This means that, until she can return to work after William's proper care has been received, she will have no method of income. On top of medical expenses for doctors' visits and treatments, Julie will struggle to pay rent and utilities. However, her decision to take FMLA time was important and appropriate so that William gets the treatment he needs.

Please help William get to the right doctors and receive the proper treatment for his condition. Anything will help and be appreciated. Please keep him in your thoughts and prayers.

If you have any questions please feel free to contact me at [email redacted]. If the questions are for Julie or William, I will forward them on immediately. Also, please be aware that your donation is not tax deductible at the end of the year. The IRS defines this as a \"gift\" and unless your donation exceeds $13,000, it is non taxable.

Thank you,

~The Annin Family

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Jodine Ellen Annin 
Chicago, IL
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