Scheduling for dual IVIGs

[kos_mom]

Saw Dr. L with DD, 19. She agrees complicated, but is convinced of Pandas. She had high ASO in July and I got Dr. H at Gtown to prescibe antibiotics first week of August--pupils very dilated, very photophobic. Started myoclonic jerk thing while he was exaamining her. Dr. T saw her last week of August and saw chorieform movements. Good news is that clindamycine seems to have ended pupil dilation and chorieform movements and her OCD (never terribly bad)and agoraphobia have greatly subsided, but jerks not yet under control. Not sure if that is Pandas or something else. Pandas not straightforward--DD seems to have cycled from sinus infection, to strep, to myco p, to sinus,to strep to myco p so many times in the last five years (and all under-treated--I got all her past labs and suspicious myco p was never investigated further or treated), that many of her issues--panic atacks, anxiety, OCD, rages had just become part of the permanent landscape. But we are finally seeing some breakthroughs with the long-term clindamycine so Dr. L quite sure of dx--also her brother is classic pandas.

 

DS, 22, has been scheduled for IVIG and we've had insurance probelms doing it at Dr. L's office because of problem with pharmacy benefits. It should be covered under major medical with United, though, so office is now trying to schedule both of them to be done at same time in G'town. The office told me they had learned today that United will stop covering IVIG for Pandas after November 1.

 

Rest of DD's issues require a lot more testing--she has spasticity in her legs with extreme hyperreflexia, making it very difficult to walk and climb stairs. Neurosurgeon suggested possibly MS or Lyme or some other infection. Neither Dr. L nor Dr. T think MS or Lyme a real possibility, though of course both will tested for. DD to have spinal tap, but because of leg spasticity it will have to be done under sedation (good for her!). Dr. L is also ordering a bunch more blood tests and genetic testing--possible mitochondrial DNA issue as brain scan showing signs suggestive of metabolic disorder (which the radiologist missed--thanks to Dr. T for picking up).

 

I feel we are really on a good track, first with Dr. T, who was a God send, and now with Dr. L, who is local for us. We still have a long way to go with DD's medical mystery and DS's OCD (may consider USF for him after IVIG), but I feel I can relax a bit now that DD is in Dr. L's hands. Such a relief after over three years of taking her from doctor to doctor, who until the hyperfexia showed up kept telling me everything was psychiatric and would chide me for feeding into her psychosomatacism by taking her to yet another doctor. She even ended up twice in a psych ward--I feel awful about that!

[Missmom]

Has it been confirmed that united will no longer cover ivig after November? On what basis? We have united and although not considering ivig at the moment, it was comforting knowing that it was an option if necessary..... Not so comforted now.

Edited September 12, 2012 by Missmom

[kos_mom]

They gave me a copy of an August 2012 United Healthcare "Medical Policy Update Bulletin" that a patient brought in this morning. Under IVIG it reads, "Revised coverage rationale: added language to indicate Pandas is unproven." (Page 20.) On page 24 it lists "Miscellaneoud Uses--Unproven." Among various other things, PANDAS is listed. (Page 24.) The effective date is given as November 1, 2012. I know the current lists puts IVIG for PANDAS as proven.

[1tiredmama]

I'm so glad that you found some answers today, and that you left with a solid treatment plan! I hope that your dd continues to improve.

[Kimflow]

Hi,

So this is disturbing. We have United Healthcare.

In the paper that you have, does it discuss Syndehams chorea for approved use of IVIG?

Thanks.

[kos_mom]

The copy I got went from page to 20 to page 24 skipping the pages in between. At the bottom of page 20 a list begins of "Infectious and Infection-related Diseases--Proven"--I don't have the page after that and it is possible (likely?) Sydenham's on that list. On page 24 there is a list of "Miscellaneous Uses--Unproven" (PANDAS is on that list, Sydenham's isn't and the list is complete), followed by "Neuroimmunologic Disorders--Unproven." Theat list does not appear complete (ie, it must run over to page 25, which I don't have)because it ends with conditions beginning with "L."

 

If Sydenham's was covered before by United, I do not think there is a change--the policy update for IVIG coverage appears to have been issued to revise only the change with respect to IVIG treatment for PANDAS as noted on page 20 of the update.

[thenmama]

I'm sure this is totally an industry-driven move. Other insurers are PO'd b/c the UHC and Harvard Pilgrim policies have been used in appeals for something they don't want to pay for. Add that to UHC maybe noticing hey, there are a lot more of these kids getting dx'd and needing treatment now and it's getting a bit expensive to do the right thing, and those guys don't play fair so why should we?

 

Time for a media blitz, maybe? My angle would be:

 

UHC has covered this as a proven treatment for the condition for X years. There have been no recent studies refuting the evidence UHC's previous policy was based upon and there is no new evidence in the medical literature suggesting the previous results were inaccurate. In fact, support for its use in the treatment of this condition has only increased in the past year, with the NIMH (the govt org overseeing PANDAS research-- important to mention b/c many major health insurers say they consult/follow govt health org's recommendations) recommending at as one of the standard of care treatments for this rare, pediatric condition. Specialists in this condition who treat patients in their clinical practices consider this the standard treatment for the condition (insert expert PANDAS doc quotes here).

 

The dramatic improvement Dr. Expert has seen in her/his clinical practice with the use of IVIG for PANDAS is echoed by the families whose lives have been changed by this difficult illness, and restored through treatment with IVIG-- many of those cases covered by UHC and carried out safely and effectively by the skilled providers in its network. Take Little Johnny for example... insert compelling story of one of our kids--preferably one whose treatment was funded by UHC. After sharing Johnny's story-- finishing of course with the triumphant return to his former self thanks to that UHC paid IVIG (something many of us have experienced) be sure to mention that Johnny and his family are terrified what this new, baseless policy change by UHC might mean for Johnny should he ever fall into the grips of another serious PANDAS episode following an infectious illness-- the type that are common among children his age and to which he may be exposed any given day just by going to school or playing with his friends.

 

Doctors and parents speculate that UHC, which they'd previously thought of as ethical and honest due to its coverage policy that privileged the medical evidence and patients over the cost, may be caving to industry pressure as other insurance companies have been facing increasing pressure to cover the treatment for this condition and being asked to defend their denials of coverage, particularly when other leading insurers, such as UHC and Harvard Pilgrim, as well as the country of Canada, have medical policies that consider IVIG a proven treatment for PANDAS.

 

Then add something about why treatments for peds and rare conditions don't get FDA approval (financial) and how FDA approval does not apply to the practice of medicine. And quote AAP's paper on peds off-label prescribing/use.

 

We asked UHC and they said, "CYA CYA CYA with some jargon thrown in to sound super official and medical and above all y'all..." Dr PANDAS expert responded to this statement by UHC, "Despite UHC's fancy-word sh*& flinging, the fact remains that the evidence still supports this treatment for PANDAS. None of that has changed since UHC last revised its policy. And UHC has not satisfactorily explained how it reached the conclusion that it's previous policy was incorrect, and if it was incorrect, how it happened that its policy supported the use of an unproven treatment, and covered it for numerous children based on some error on UHC's part, over a period of several years."

 

Then finish by returning to Johnny-- For now, Johnny's parents are just grateful that he's well, and are hoping they'll never face a day that they lose him to another bout with his PANDAS, but are unable to afford the treatment he needs to bring him back to them.

 

Or something roughly like that...

Edited September 14, 2012 by thenmama

[kimballot]

Not sure if that is Pandas or something else. Pandas not straightforward--DD seems to have cycled from sinus infection, to strep, to myco p, to sinus,to strep to myco p so many times in the last five years (and all under-treated--I got all her past labs and suspicious myco p was never investigated further or treated), that many of her issues--panic atacks, anxiety, OCD, rages had just become part of the permanent landscape. But we are finally seeing some breakthroughs with the long-term clindamycine so Dr. L quite sure of dx--also her brother is classic pandas.

 

With all of those infections... how is her immune system? Could you get a dx of Common Variable Immune Deficiency? Be sure to have all subclasses of antibodies checked as well as s. pneumoniae titers - not just total IgG levels. If she is CVID or other immune deficient, and has had that many infections then she should be covered for IVIG via UHC. Also - document loss of function such as missed days of school or work.

 

DS, 22, has been scheduled for IVIG and we've had insurance probelms doing it at Dr. L's office because of problem with pharmacy benefits. It should be covered under major medical with United, though, so office is now trying to schedule both of them to be done at same time in G'town. The office told me they had learned today that United will stop covering IVIG for Pandas after November 1.

 

Rest of DD's issues require a lot more testing--she has spasticity in her legs with extreme hyperreflexia, making it very difficult to walk and climb stairs. Neurosurgeon suggested possibly MS or Lyme or some other infection. Neither Dr. L nor Dr. T think MS or Lyme a real possibility, though of course both will tested for. DD to have spinal tap, but because of leg spasticity it will have to be done under sedation (good for her!). Dr. L is also ordering a bunch more blood tests and genetic testing--possible mitochondrial DNA issue as brain scan showing signs suggestive of metabolic disorder (which the radiologist missed--thanks to Dr. T for picking up).

 

I feel we are really on a good track, first with Dr. T, who was a God send, and now with Dr. L, who is local for us. We still have a long way to go with DD's medical mystery and DS's OCD (may consider USF for him after IVIG), but I feel I can relax a bit now that DD is in Dr. L's hands. Such a relief after over three years of taking her from doctor to doctor, who until the hyperfexia showed up kept telling me everything was psychiatric and would chide me for feeding into her psychosomatacism by taking her to yet another doctor. She even ended up twice in a psych ward--I feel awful about that!

 

 

You have the best neurologists on your case! Sounds like more than PANDAS for sure... keep digging!!

 

Best wishes!

[tpotter]

Wow...1TiredMom, that was a great letter you just laid out.

 

Also, I agree with Kimballot about the immune deficiency, but make sure if they do have it, that you get a copy of your insurance policy,and follow the requirements exactly (like Kimballot said, document missed days of school/work, how many days in the past 1/2 year or year your child has had an infection and been treated with abx, antivirals, etc.) This is what we had to do, and it worked.

 

Finally, although I think the world of Dr. L (she is truly fantasstic and caring), neither she nor Dr. T. are lyme specialists (and both will admit to that.) Before ruling out lyme, bartonella, babesia, RMSF, Erlichiosis, and others, I would definitely see an LLMD. Lyme is a clinical dx, because the standard blood tests can be terribly inaccurate (lots of false negatives). Also, bartonella causes the bacteria to hide out in cysts (including lyme bacteria), so it can be very difficult to dx, unless you burst the cysts with a cyst buster (like flaggyl or tindamax, for instance.) Then, after that's done, the blood tests may come back as positive, because the bacteria cannot hide out anymore. Also, there may be parasites that can cause these symptoms, and will not show up on a standard Western Blot (even Igenex isn't perfect, it's a little better than Quest or LabCorp WB, but not perfect.)

 

There is a new test out that is about 80% accurate by Advanced Lab (the doctor has to request a test kit be sent to you, and then you go get the draw, and mail it back.) This actually takes a picture of the blood, and if positive, you will actually see the spirochetes (hard for insurance to argue with that kind of evidence.) But, most insurance doesn't pay for it (it's about $500 or so.) We did it, and our son was negative (he used to have Lyme, and based on his improvement, I tend to believe these results.)

 

There's also another test...I think it's a PCR DNA test (someone correct me, please if I'm wrong). It allows the doctor to get DNA evidence...again hard to argue with. I hear it is about 90 something % accurate. Again, probably paid out of pocket.

 

The fact that you are dealing with mycoP, which can be a co-infection of lyme, just makes be believe that this could be lyme, and if it was my child, I would be going to all extents possible to make certain it's not part of the what is making them sick.

 

One other thing I would at least consider, is the possibility of mold. Is there any chance your children have been exposed to mold? I know the issue came up in the past on the forum, and I only mildly looked into it, but since we are now, personally in the midst of a mold crisis in our house, I am now associating some of my own and my childrens' symptoms with the mold (toxic mold found, we got huge increase in neuropsych and lung symptoms, we left the house for several weeks while remediated (well sort of)...everything calmed down...we came home, and some of symptoms are back again.) I doubt all their symptoms are mold related, but mold will definitely make everything worse.

 

Just some thoughts to look into.

 

Good luck.

[MaggiesMoons]

Saw Dr. L with DD, 19. She agrees complicated, but is convinced of Pandas. She had high ASO in July and I got Dr. H at Gtown to prescibe antibiotics first week of August--pupils very dilated, very photophobic. Started myoclonic jerk thing while he was exaamining her. Dr. T saw her last week of August and saw chorieform movements. Good news is that clindamycine seems to have ended pupil dilation and chorieform movements and her OCD (never terribly bad)and agoraphobia have greatly subsided, but jerks not yet under control. Not sure if that is Pandas or something else. Pandas not straightforward--DD seems to have cycled from sinus infection, to strep, to myco p, to sinus,to strep to myco p so many times in the last five years (and all under-treated--I got all her past labs and suspicious myco p was never investigated further or treated), that many of her issues--panic atacks, anxiety, OCD, rages had just become part of the permanent landscape. But we are finally seeing some breakthroughs with the long-term clindamycine so Dr. L quite sure of dx--also her brother is classic pandas.

 

DS, 22, has been scheduled for IVIG and we've had insurance probelms doing it at Dr. L's office because of problem with pharmacy benefits. It should be covered under major medical with United, though, so office is now trying to schedule both of them to be done at same time in G'town. The office told me they had learned today that United will stop covering IVIG for Pandas after November 1.

 

Rest of DD's issues require a lot more testing--she has spasticity in her legs with extreme hyperreflexia, making it very difficult to walk and climb stairs. Neurosurgeon suggested possibly MS or Lyme or some other infection. Neither Dr. L nor Dr. T think MS or Lyme a real possibility, though of course both will tested for. DD to have spinal tap, but because of leg spasticity it will have to be done under sedation (good for her!). Dr. L is also ordering a bunch more blood tests and genetic testing--possible mitochondrial DNA issue as brain scan showing signs suggestive of metabolic disorder (which the radiologist missed--thanks to Dr. T for picking up).

 

I feel we are really on a good track, first with Dr. T, who was a God send, and now with Dr. L, who is local for us. We still have a long way to go with DD's medical mystery and DS's OCD (may consider USF for him after IVIG), but I feel I can relax a bit now that DD is in Dr. L's hands. Such a relief after over three years of taking her from doctor to doctor, who until the hyperfexia showed up kept telling me everything was psychiatric and would chide me for feeding into her psychosomatacism by taking her to yet another doctor. She even ended up twice in a psych ward--I feel awful about that!

 

 

We also have United Healthcare....

Just got approved for IVIG, 3 rounds of it actually, to be given at 4 week intervals.

Not sure if we will need to or should or will do all 3 rounds yet. We will decide that after we see how the 1st one goes.

Just pulled up the Policy updates on PANDAS and IVIG with UHC and it they will be ending coverage effective 11/1/12 for PANDAS and IVIG.

Since they have already approved us for 3 IVIG's at 4 week intervals I wonder what will happen after 11/1/12!?

To do all 3 if we choose to will take us into the END of November.

We will get the first one the last week of Sept. Could get a 2nd one in before end of Oct.

 

I also read where they have classified acute rheumatic fever as "unproven" eff: 11/1/12 as well Isolated IgA deficiency and Isolated IgG4 deficiency eff: 11/1/12 both also as "unproven"

So they (UHC) has covered their bases and are screwing these kids from IVIG at every angle!

[kos_mom]

Dr. L also thinks some immune deficiency must be going on--but on DD's tests she was lowish (but not out of range) on only one IGG subclass. Her IgE was well out of bounds, but not sure what that counts for. In any case, Dr. L is convinced enough she is re-running all the tests. I almost laughed at keeping track of missed school or work. DD's been home for over a year, mostly in her room and more specifically her bed. She's being tested for many things including hereditary and mitochondrial disease--brain scan apparently indicative of possible metabolic disorder. If we come up empty on this round of tests, we will definitely go full bore into investigating lyme and co-infections. As for mold is it relevant is very allergic to two types--alternaria and aspergillus. I think the latter will be tested for on her spinal tap.

 

As for United, this week it knocked Kraft Foods off the Dow Jones Index, an indication of its weight in the economy. It is the only health care company on the index. Somehow this seems related to the thought that it should be covering IVIG for kids who need it. I really like 1tiredmama's letter. Do we have anyone whose kid could be the poster child for recovery owing to IVIG paid for by United? I really don't understand how they go from proven to unproven with no tests or studies having been released.

[Missmom]

I don't mean to bring politics into this but if this is all starting to happen already, I don't even want to think about how bad it is going to be once Obama-care starts to take effect. Everybody will have to get approval from even more beaurocrats before we can get anything covered, and will probably be forced to use in-state doctors. It will take an act of congress to get to see a specialist. Then, i can only imagine what they will say about pandas/pans..... This is scary. We are just now beginning to scratch the surface of all of these conditions which have an autoimmune response and I am afraid that if our children don't exactly fit into one specific category they will be ignored. All i know is i am going to have to start building my rainy day fund much bigger.

[DeterminedMomVA]

I don't mean to bring politics into this but if this is all starting to happen already, I don't even want to think about how bad it is going to be once Obama-care starts to take effect. Everybody will have to get approval from even more beaurocrats before we can get anything covered, and will probably be forced to use in-state doctors. It will take an act of congress to get to see a specialist. Then, i can only imagine what they will say about pandas/pans..... This is scary. We are just now beginning to scratch the surface of all of these conditions which have an autoimmune response and I am afraid that if our children don't exactly fit into one specific category they will be ignored. All i know is i am going to have to start building my rainy day fund much bigger.

 

Missmom, Please don't bring politics into it. There will be no government bureaucrats involved in the way the rhetoric apparently has you believing. The insurance company bureaucrats are the problem being discussed at the moment. Keep in mind that NIMH is a government agency and all of the clinical studies that have been done on PANS/PANDAS have been government-funded by government researchers. Insurance companies will be under much more pressure to cover IVIG for PANDAS if this second NIMH study also shows that IVIG is effective and is published in a peer-reviewed journal. I'm far more worried about making sure the NIMH continues to be funded well enough to keep doing PANS/PANDAS research. (Paul Ryan is no friend of the NIH -- Cuts to NIH funding) Let's keep the thread and board on point and discuss PANS/PANDAS and our kids' struggle with it, and not throw out inflammatory political opinions --it's a sure way to destroy the welcoming and helpful tone of this board. Thanks.

Edited September 16, 2012 by DeterminedMomVA

[Missmom]

I don't mean to bring politics into this but if this is all starting to happen already, I don't even want to think about how bad it is going to be once Obama-care starts to take effect. Everybody will have to get approval from even more beaurocrats before we can get anything covered, and will probably be forced to use in-state doctors. It will take an act of congress to get to see a specialist. Then, i can only imagine what they will say about pandas/pans..... This is scary. We are just now beginning to scratch the surface of all of these conditions which have an autoimmune response and I am afraid that if our children don't exactly fit into one specific category they will be ignored. All i know is i am going to have to start building my rainy day fund much bigger.

 

Missmom, Please don't bring politics into it. There will be no government bureaucrats involved in the way the rhetoric apparently has you believing. The insurance company bureaucrats are the problem being discussed at the moment. Keep in mind that NIMH is a government agency and all of the clinical studies that have been done on PANS/PANDAS have been government-funded by government researchers. Insurance companies will be under much more pressure to cover IVIG for PANDAS if this second NIMH study also shows that IVIG is effective and is published in a peer-reviewed journal. I'm far more worried about making sure the NIMH continues to be funded well enough to keep doing PANS/PANDAS research. (Paul Ryan is no friend of the NIH -- Cuts to NIH funding) Let's keep the thread and board on point and discuss PANS/PANDAS and our kids' struggle with it, and not throw out inflammatory political opinions --it's a sure way to destroy the welcoming and helpful tone of this board. Thanks.

 

Really sorry, I should not have posted in this context, just really frusterated right now. We have united and have always felt it was kind of a safety net to have this covered should we need to pursue ivig in the future. Now I find out that safety net will be gone. I did not mean to offend anyone just really really scared about what cuts will come next. I know NIMH has funded these studies and is doing a lot of good but at the same time they have also rejected a lot of children for their study that did not fit into the pandas/pans "Box". What happens to some of our children who don't fit into the "box". Just afraid they won't get the treatment they need. I am frusterated with all gov't beurocrats in general not just one political party. I just mentioned obama-care because that is what we will all soon be faced with. I recently had a very bad experience trying to just get a medical vaccine exemption in my state because of govt. rules and regulations and that was not part of obama-care but contributed to my frustrations. The only real point I meant to make is that I guess it's time to start saving $$$$$ because it seems harder and harder to get these people to listen. Unless of course you cut your toe and get to meet the trauma team in the ER.

[minimaxwell]

Running out to work but wanted to Quickly comment. My child only attended 31 full days of school last year. After 2 lVlG's she is 70-80 % better. We will see our immunlogist on thursday to discuss this and report back. She is at MGH and has only done lVlG for 3 pandas kids so far, my dd was one of them. The other specialists may be more knowledgeable on how to take this on. Has anyone called UHC yet to find out how they went from proven to unproven??

Thenmamama, i love your post!