Help4Sky

Hi I get my sons IV covered through BCBSNJ.The 1st iv was covered under some dx related to pandas.We now do IV every 3 weeks through an alt dx of immune defiency. It wasnt easy but we did it.Ask for a pediatric insurance specialist case manager.They seem to be more understanding and helpful. Melanie Thanks for the information. I appreciate all and any input you can give me.

We did 4 days of slow IVIG 5 weeks ago with great success. Not complete eradication of all motor tics, but with a much less anxious child who is now able to do the "normal" things in life like school, sports, and everyday showers without trauma. My son was diagnosed with PANDAS in September after we saw the sort of tics that became unmanageable and a new "side" of our son that was scary to say the least. We tried the antibiotics and they did settle down the behavior a little and helped with the head jerks, but the doctor recommended IVIG. The only down side to the IVIG was that we could not do 4 days in a row, and needed a day off because of a sever head ache. And my insurance has yet to pay. I wasted valuable time trying to get the insurance to pay when I wish I had just been getting my son the IVIG! The positive side was that it has helped in the OCD and ticks. We will do a "booster" dose once a month for the next few months. But, the doctors after seeing him a month post IVIG noted an improvement!!! I will keep posting here after all the IVIG treatments to give you all input an information. Keep up the good fight for your children.

I have a son who is 11 and diagnosed with PANDAS last September from Stanford University's Pediatric Neurology Doctors. I am so thankful for a very thorough exam and diagnosis because I thought my son was going to die when he had an onslaught of OCD and ticks (very fast head jerking and more within a few month--like something taking over his body each day with more force). We have found some improvement with antibiotics, but we needed to give him IVIG. So, we did it without insurance approval. A good lesson from this is that when your doctor tells you to do something that will help your PANDAS child then you need to do it regardless of insurance approval. After the IVIG my son has improved; his anxiety level is down, he can concentrate on math, he is interested in sports again, and he says things like "I feel great." Before we started treating him with antibiotics and IVIG he was "hating himself," failing math and so full of anxiety it was controlling him. He could not play tennis anymore when the PANDAS was at its worst because of the sudden movements. I am so HAPPY to report that the IVIG is working. However, we need some booster IVIG shots and they are about 3,000.00 a pop. Already spent 15,000.00. Has anyone successfully gotten insurance to pay? My insurance is Anthem Blue Cross PERS of California.I have gone through 3 appeals with insurance and they continue to deny payment I'm not going to write about how much time I have spent in researching, letter writing, and calling the insurance company because it is crazy--I could write a book about the horrible things the insurance company has done to deny us the IVIG. I don't qualify for any of the state assistance programs. I am getting ready to write my final appeal to the PERS board. Anyone had success with insurance paying for IVIG due to a PANDAs diagnosis?