Obvious symptoms of PANDAS/PANS began in Jan. 2010, where a strong departure of Carly’s “normal” self-went away quickly. Numerous testing and repeated blood draws point to the lengthy duration of the disease and multiple infections driving it. They are: Lymes, Strep, and Black mold. It helps us understand why she has grown increasingly worse over her lifetime.
Over the last 8 years, we have sought answers through Eastern and Western Medicine: OT, Antibiotics, homeopathic, Cranial Sacral, Gene Mapping and nutritional supplements to name a few. Most recently Moleculara Labs (the only lab in the country testing for these answers)diagnosed this horrific disease, referred us for treatment at the Mayo Clinic in Minnesota and started us on the path to the IVIG Treatment. We have hit a wall and the need is stronger now, more than ever.
Research regarding this disease is still regarded as the beginning stages and the country offers a small network of Doctors who truly understand it and how to treat it, especially in Carly’s case where it has gone undiagnosed for so long.
Both of these sites help with understanding this horrific disease.
· Great Video story on PANDAS Families: https;//mykidisnotcrazy.com/
While there are many doctors practicing IVIG here in Minnesota, none specialize in the treatment of PANDAS IVIG. Dr. Elizabeth Latimer in Washington, D.C. has great success and notariety in the treatment of PANDAS/PANS – her success rate is something we pray for. While IVIG is a treatment covered by some insurances, IVIG for PANDAS/PANS is not yet covered. The medical community agrees this is the best, and possibly only, option left in hopes of curing Carly of this. None of the clinics offer payment plans or funding. We are hoping to raise $38,000 in order to assist with the back to back IVIG treatment Dr. Latimer proposes. Costs include the $15,000/treatment fee as well as other travel and ancillary costs. These costs have to be collected before we travel. While we wish we could pay for this ourselves, our finances do not allow.
We have an appointment on February 13, 2018 for back to back IVIG treatments necessary to alter her immune system. http://www.pandasnetwork.org/understanding-pandaspans/ivig/
If you are able and lead to donate, we appreciate this more then you can ever know, however, just passing this along to friends and family will help to bring awareness to PANDAS/PANS. Thank you so much in advance for your kindness and care!
The Ness Family
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