Any luck getting insurance to pay for IVIG?

[Help4Sky]

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?

[ShaesMom]

Have you tried contacting the manufacturer of the IVIG shots that he will be receiving? Some companies, like Baxter, have programs to help patients who can't get approval through insurance.

[melanie]

Have you tried contacting the manufacturer of the IVIG shots that he will be receiving? Some companies, like Baxter, have programs to help patients who can't get approval through insurance.

 

 

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

[sf_mom]

Wow, just shocked you made headway and were treated at Stanford Children's.... We've seen three different immunologist there and they said they would re-treat our son if he had a relapse. Plus they've been running labs and helping to diagnose our twins. Unfortunately, they told us the use of IVIG would be an off label treatment that would most likely NOT be covered by insurance. We have Anthem Blue Cross PPO with a $5,000 deduct per child per year. We originally went to Dr. K with our older son and he has since retreated him twice. We had a primary TIC presentation and it looks like he is finally pulling out of this with only occasional rapid eye blinking and cough.... no OCD. We are praying that the last treatment holds and the last remaining symptoms fade. BUT, so far it is looking like we 'MIGHT' get some money back for the second treatment once we meet our deductable. In our situation, we had RF and Kawasaki's history and Dr. K coded in accordance with RF Chorea.

 

I would also think about doing another larger two day dose verses small monthly boosters. Dr. K is having great success with the treatment because it shuts down the bone marrow and reboots good antibody growth. At least spend the $350 to consult with Dr. K prior to spending $3,000 per shot. I would hate for you to spend the money and not get the proper benefit from them.

 

Where are you located? We are about 2 miles from Stanford University and had to go ALL the way to Chicago!

 

-Wendy

 

 

 

 

 

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?

[Help4Sky]

Have you tried contacting the manufacturer of the IVIG shots that he will be receiving? Some companies, like Baxter, have programs to help patients who can't get approval through insurance.

 

 

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.

[Help4Sky]

Wow, just shocked you made headway and were treated at Stanford Children's.... We've seen three different immunologist there and they said they would re-treat our son if he had a relapse. Plus they've been running labs and helping to diagnose our twins. Unfortunately, they told us the use of IVIG would be an off label treatment that would most likely NOT be covered by insurance. We have Anthem Blue Cross PPO with a $5,000 deduct per child per year. We originally went to Dr. K with our older son and he has since retreated him twice. We had a primary TIC presentation and it looks like he is finally pulling out of this with only occasional rapid eye blinking and cough.... no OCD. We are praying that the last treatment holds and the last remaining symptoms fade. BUT, so far it is looking like we 'MIGHT' get some money back for the second treatment once we meet our deductable. In our situation, we had RF and Kawasaki's history and Dr. K coded in accordance with RF Chorea.

 

I would also think about doing another larger two day dose verse small monthly boosters. Dr. K is having great success with the treatment because it shuts down the bone marrow and reboots good antibody growth. At least spend the $350 to consult with Dr. K prior to spending $3,000 per shot. I would hate for you to spend the money and not get the proper benefit from them.

 

Where are you located? We are about 2 miles from Stanford University and had to go ALL the way to Chicago!

 

-Wendy

 

We live on the Central Coast about 3.5 hours from Stanford. We went to Pediatric Neurology, and they did a very intense exam the first time when the tics became uncontrollable and my son's OCD was showing itself while we were there. This is all before I had a name for what was happening; all I knew was that my son was rapidly changing and he was no longer himself emotionally or physically. I thought he had a brain tumor. I could go into greater detail, but I think if you have a child with PANDAS you know enough about that pain already. Anyways, his diagnosis was complete with a strep infection taking place a few months before all the changes.

 

My insurance keeps saying things like, "he doesn't have PANDAS, IVIG is not recommended for PANDAS." So, every time I send them more information refuting their denial they change the denial to something else. More than anything, it has infuriated me because of the time I have to spend appealing, and the way in which the insurance company is allowed to operate in the denial situation. During the entire last 6 months all I have done is hoped for a cure to the PANDAS, and dealing with the insurance company made it seem impossible for hope. That is wrong on many fronts.

 

Thankfully, we did the IVIG. I can't tell you how much calmer and tic free my son is--more like his old self. It is really only now, seeing recovery, that I have been able to write anything here. I would read other peoples comments and research while trying so hard to find hope. It was terrible. I am now ready to continue with the insurance battle, and I hope to continually post good news about my son. Thanks for your replies.

 

I wish you success in your endeavor to help your son.

 

 

 

 

 

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?

[sf_mom]

One thing you might want to consider is a health care advocate to help fight the insurance battle. We had great success for a prior issue with Kevin Flynn http://www.healthcareadvocates.com/president.html In total he was about $500.00.... and our insurance issue got resolved.

 

-Wendy

[mom2gsd]

We have gotten Anthem BCBS to pay, you might join this yahoo group below, they were very helpful to me:

 

http://groups.yahoo.com/group/autism_insurance_information/

 

OR.... contact Christina Peck: blessedwithautism@yahoo.com

she was the most help