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Need Multiple IVIG but Insurance denied-HELP!


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Hello, my son, 8 years old, has severe deblitating OCD. His ocd got so severe after 2 weeks of onset that he had to stop going to school and recieve homebound services. He had his first ivig 10 weeks ago after months of multiple antibiotics and steroids. Our insurance covered the ivig (we have United Health Care). Four days after ivig we saw drastic improvements. We still see improvements here and there but he is still unable to do daily things or really function normally at all. He will not be able to go to school next month and will recieve homebound school. We need more ivig's but our insurance denied us stating that there is no literature to support the use of repeated treatments with IVIG for PANDAS. Any ideas? We are desperate for help.

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Hello, my son, 8 years old, has severe deblitating OCD. His ocd got so severe after 2 weeks of onset that he had to stop going to school and recieve homebound services. He had his first ivig 10 weeks ago after months of multiple antibiotics and steroids. Our insurance covered the ivig (we have United Health Care). Four days after ivig we saw drastic improvements. We still see improvements here and there but he is still unable to do daily things or really function normally at all. He will not be able to go to school next month and will recieve homebound school. We need more ivig's but our insurance denied us stating that there is no literature to support the use of repeated treatments with IVIG for PANDAS. Any ideas? We are desperate for help.

 

 

Get a printout of their actual IVIG policy for the dx. Then, follow it step by step. For instance, if it says that you have to prove how it is affecting your son, list:

1) what he was like before IVIG.

2) how he was after IVIG.

 

Include supporting documentation...# of missed school days, how many visits to the dr. during a short time period (before, after, and then when it got worse again), what the diagnoses were at the dr (in our case they were always bacterial infections that needed abx...9 times in 6 months, which is quite excessive.) Take video if you can (and if you can dig up any from before, after, and then now.) Document, document, document.

 

If getting it for PANDAS repeatedly is not an option, because there's no supporting documentation for multiple IVIGs, does your child have an immune deficiency (such as specific or primary immune deficiency?) There is supporting documentation for those, and you may need to add those as co-diagnoses. Again, find out what the requirements are to prove for either of these, because the requirements may be different.

 

Finally, if your child is continuing to get sick, I would recommend (from personal experience with 2 kids, and multiple IVIGs) that you look for additional infections (lyme, bartonella, babesia, erlichiosis, rocky mt. spotted fever, viruses, etc.) All our kids have an autoimmune disorder, so they are susceptible to getting anything they are exposed to, and many also have difficulty getting it out of their bodies (my children turned out to have a single MTHFR gene mutation, and I ended up have a homozygous, which keeps the body from getting these things out of their bodies, but is very easy to remedy.)

 

Personally, I am very grateful that my kids got the multiple IVIGs, but had I known what I know now, I would be also doing all the other investigation.

 

Good luck.

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Hello, my son, 8 years old, has severe deblitating OCD. His ocd got so severe after 2 weeks of onset that he had to stop going to school and recieve homebound services. He had his first ivig 10 weeks ago after months of multiple antibiotics and steroids. Our insurance covered the ivig (we have United Health Care). Four days after ivig we saw drastic improvements. We still see improvements here and there but he is still unable to do daily things or really function normally at all. He will not be able to go to school next month and will recieve homebound school. We need more ivig's but our insurance denied us stating that there is no literature to support the use of repeated treatments with IVIG for PANDAS. Any ideas? We are desperate for help.

 

 

Get a printout of their actual IVIG policy for the dx. Then, follow it step by step. For instance, if it says that you have to prove how it is affecting your son, list:

1) what he was like before IVIG.

2) how he was after IVIG.

 

Include supporting documentation...# of missed school days, how many visits to the dr. during a short time period (before, after, and then when it got worse again), what the diagnoses were at the dr (in our case they were always bacterial infections that needed abx...9 times in 6 months, which is quite excessive.) Take video if you can (and if you can dig up any from before, after, and then now.) Document, document, document.

 

If getting it for PANDAS repeatedly is not an option, because there's no supporting documentation for multiple IVIGs, does your child have an immune deficiency (such as specific or primary immune deficiency?) There is supporting documentation for those, and you may need to add those as co-diagnoses. Again, find out what the requirements are to prove for either of these, because the requirements may be different.

 

Finally, if your child is continuing to get sick, I would recommend (from personal experience with 2 kids, and multiple IVIGs) that you look for additional infections (lyme, bartonella, babesia, erlichiosis, rocky mt. spotted fever, viruses, etc.) All our kids have an autoimmune disorder, so they are susceptible to getting anything they are exposed to, and many also have difficulty getting it out of their bodies (my children turned out to have a single MTHFR gene mutation, and I ended up have a homozygous, which keeps the body from getting these things out of their bodies, but is very easy to remedy.)

 

Personally, I am very grateful that my kids got the multiple IVIGs, but had I known what I know now, I would be also doing all the other investigation.

 

Good luck.

Thanks:) We had him tested before his first ivig for coinfections. He tested negative for lyme, but positive for mycoplasma. He was tested for mycoplasma after ivig and was still positive. His strep titers were high since diagnosis, and went down to normal levels after ivig. He doesn't have an immune defficiency. On a side note, we believe that our son had PANDAS before. He had a mini version of this a couple of years ago. We didn't realize at the time that this was PANDAS of course. It only lasted a few months and then vanished. I chalked it up to a phase. He is taking clindamycin ped 75mg/5ml sol and takes 5.5ml 3x a day, and has been since may 15th when we realized he was allergic to clarithromycin. He has been on different antibiotics constantly since Feb. I appreciate all of your help. I feel very overwhelmed. The doctor who diagnosed him and is treating him is a friend of ours and has been very proactive in helping us get our appeal. We have just had no success as of now. It is so hard watchig him saying he hates his life and wants to die:(

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