Mom23boys

I know this is an older topic, but the easiest way to get IVIG approved is to read your policy and to go with what your policy says. PANDAS/PANS is almost always excluded. Immunodeficiency is almost always included in some way, shape or form. Whether your son meets the guidelines and what dosage he will qualify for depends on what your policy says and what your doctor orders. It may well be if he qualifies under an immunodeficiency section of the policy that your doctor can get them to approve HD IVIG on the basis that he also has an underlying autoimmune condition that would contraindicate low dose IVIG. Most IVIG policy provisions are updated yearly and there should be a date on the written IVIG coverage provisions to ensure you are dealing with the latest one.

Switch doctors. Syndeham's chorea is a well established illness accepted by mainstream medicine. It is also a major criteria for diagnosis of rheumatic fever. Rheumatic fever requires antibiotics til 18 or 21 depending on who you ask. If your child did in fact have rheumatic fever, he needs to be on antibiotics til he is at least 18. I think you need a second opinion.

Cigna actually does cover PEX for syndenham's chorea that is severe under their current policy. I ditto the alternate infections route. What have you tested for? Viruses? Mycoplasma? I see some viruses have been tested. Can you test for others? Would Dr. L do a trial of acyclovir (very benign in the scheme of past and proposed treatments)? I would leave no stone unturned in the active infection camp before I did PEX. Having said that, when denied, appeal. With failure of 3 IVIGs you have a strong case that they have failed other treatment. You can look up other health care provider's positions on IVIG by typing in IVIG policy "X insurance company". Be sure you have the most current one. Could you get a SC diagnosis based on symptoms or is that too far out there (we have tics and chorea)? As a last resort, there are people that do health insurance appeals. You may want to go it on your own but as much at stake as you appear to have (2 children, right?) it may be worth paying for some advice on the best way to attack this.

I don't know much about autism or "stimming" but shoulder rolling, forceful blinking and sniffing are all very classic and common tics. We have had the sniffing and blinking in both boys. . . I am glad you are following up if only for peace of mind!!! I think we need to listen to our parental instincts and you have something telling you that this is not right . . . I just wish I had followed up earlier with my oldest. We were talking about that yesterday . . . I have a lot of regret there.

Not sure why you think she has to have ASD to have a tic? They are not related at all. Transient tic disorder is very common in children (as many as 1 in four boys have it). Chronic tic disorder is also very common in children, but less so. Not related to autism or asbergers at all. In fact, my oldest who still has tics which started at 7 (he is now 15) is highly gifted and no autistic symptoms at all. He has a very high IQ, knew the alphabet at 18 months, taught himself to read before he was 3, etc. . . We believed the transient tic diagnosis for years, and then believed the chronic childhood tic diagnosis. We waited too late for treatment because he had no other issues, was flourishing socially and academically and was a perfectly normal child behaviorally and and academically. Basically the dream kid with mild tics. When he hit puberty, he started a facial grimace which was harder to hide than the eye blinking and they got worse. Still totally functional (he is an actor and continues to get the lead in the play, etc.), but that is when we decided to see Dr. Latimer. He has been on multiple antibiotics, had a tonsillectomy, a 8 week steroid burst and no improvement. Having said that, he is where most kids are when they are back to 98 percent . . . just an annoyance but will become a social issue at some point (not yet - great friends!!!). My 10 year old started at 7 also. When we took my oldest to Latimer we took him too. At the time he was forceful blinking, a soft sigh and pursing his lips. Multiple times a day. The blinking might go on for a minute or two but then stay away for an hour, etc. After tonsillectomy he is 80 percent improved and on azith all tics are totally gone. We are starting a steroid burst in hopes to keep them gone when we go off the azith. Much easier to fix . . .

My husband is a doctor and very anti antibiotic. We very rarely took our kids to the doctor except for check ups. When I took my boys to Dr. Latimer she said "typical doctors kids". I think frankly the reason they have this is because they had an undiagnosed strep infection. My sister is also a doctor and when I expressed concern about the antibiotics she said give a good probiotic. She has a child who has fallen off the cliff (and is now well after plasma exchange and several years of IVIG) so I am sure she would say if 3 months of antibiotics would fix it, count yourself lucky, I just wouldn't ignore it. The simple fact is the longer it goes undiagnosed, the harder it is to treat. She is very young with very mild symptoms. My niece was very similar to your daughter. As my sister's 3rd child with PANDAS (first very severe, second milder) she took her immediately to Dr. Latimer who gave her several months of antibiotics and 30 days of steroids. She has not had a problem since. Every once in a while she has a tic and my sister gives her 5 days of steroids and they go away. She was 6 when she developed tics and she is almost 10 now. The history of scarlet fever is very interesting. They are doing a study right now at the NIH on the genetic predisposition to pandas. The thought is that it runs through the maternal side of the family, which is certainly true in our family.

And just FYI I have two kids with PANDAS. One without. We do have a family history of autoimmune strep (Syndeham's chorea, scarlet fever, strep glomerunephritis, etc.) in our family but no tics. My kids have tics as their primary symptom and it was the presenting symptom for both of them. Oldest was confirmed with blood tests and positive Cunningham panel. We didn't do that with our youngest because he has the exact same presentation. Dr. Latimer confirmed him just based on clinical presentation. If the doctor is in network, my thought is it won't hurt to see him and to try a month or longer of antibiotic. We never gave our kids antibiotics and frankly that is probably why they ended up in this mess . If she gets better, then you have your answer. Transient childhood tics are also common, although less so in girls, so that is also a possibility.

It could be PANDAS and I certainly would not rule it out. It is suspect that these tics came on abruptly after infection. A short course of antibiotics is not enough to rule it out. Dr. Latimer says at least a month for the first episode, and penicillin is not always effective. I would go with your gut. If it is PANDAS and you catch it early it is often an easy and cheap fix. If you wait, it often becomes much more difficult as the inflammation becomes worse and harder to treat. Is Dr. Friedmeyer PANDAS friendly? I would start with him. In the meantime look over www.pandasppn.org. It is a website written by doctors and researchers (the top ones in the country like Swedo Latimer et al) to educate doctors about PANDAS, and contains information on diagnosis, treatments and the latest research. It has a flow chart for diagnosis and treatment (and it says try an antibiotic for two weeks and if not better try a different one for another two weeks if I remember right). Azithromycin and Augmentin XR are effective for these kids, as is omnicef. I had an infectious disease doctor tell me if we get strep to ask for omnicef - very little resistance to that one. If you get an antibiotic, Dr. Latimer recommends florastor (we like the CVS generic no flavor for little ones that can't swallow pills). You can take the same time as antibiotic and it is great at preventing stomach issues.

Dr. O'Conner has a full time allergy practice and also sees PANDAS patients. Dr. Latimer in DC is a pediatric neurologist, former head of Pediatric Neurology at Georgetown and is one of the top doctors in the nation for PANDAS and is on the cutting edge of research. She publishes at least one (usually more) papers a year addressing various issues that arise in PANDAS cases. My sister saw both (Dr. O'Conner did her IVIG because she was local, but it was prescribed by Dr. L). Between the two, I would definitely see Dr. L. Yes, it is a further drive but I would go to the top.

Call Dr. L's office and ask to get on the cancellation list. You will get in much earlier than March. As far as bloodwork, if you have what she thinks is necessary done in January she likely won't have you repeat it. She is not huge on bloodwork as far as I can tell. She doesn't run tons of tests like Dr. T. She had us do an ASO, AntiDnase B and throat culture on two pandas kids and their brother to be sure he was not a carrier. That is it. Dr. L will diagnose PANDAS based on history as well, realizing that some kids don't ever raise a strep titer.

If your son is getting better on prednisone and abx his symptoms are either caused by an infection or inflammation or a combination of the two. I would continue down that path for the foreseeable future and then perhaps reintroduce CBT when he is not in a flare. Have you done any blood tests to try to determine the source of the infection or trigger? I am getting ready to run (if I can get my husband (doctor) to order it - we have no pediatric support) Dr. T's blood panel, or most of it, to be sure we are not missing anything since Dr. L really does not do much testing outside of strep.

Hard to tell. No strep while on bicillin but no improvement either (tics main symptom). This did not improve until tonsils were out, and then improvement of all symptoms in younger child. Older still has tics, but only symptom. He is now on azith and cefdinir. I am going to do some additional blood tests to be sure we aren't missing an infection that is not strep related, even though we have a clear strep trigger. I have heard of numerous stories where Bicillin is very effective though. Used a lot in Italy.

Another abx possibility is the Bicilin shot. Dr. L put my boys on it. It is a once a month shot, intramuscular so it is quite painful. The benefit is that you won't have to worry about it the rest of the month, you have a continual level of abx, and it addresses strep effectively (and apparently is good for intercellular strep). If compliance could be an issue away from home (missing pills, etc.), this might be an option. They may be willing to give it at the health center as well. It must be refrigerated but he could keep it in his dorm fridge . . . just a thought!

Just out of curiosity, what antibiotic is he on where he still gets strep every few months? I would spend the next few months trying to find one where he didn't have break through strep if you haven't already done so . . . And it is likely you have already tried this but what about a tumeric or other natural inflammatory supplement daily. I can understand not wanting to do the ibuprophen every day but perhaps something else. Also Dr. Latimer likes Aleve even better than ibuprofen I hear in some cases and that is much longer acting - maybe that will help him keep his appetite throughout the day so he can actually put some weight on. If it works, I may do that for a week or two periodically. . .

We did the Cunningham test when it was part of Dr. Cunningham's research study at Oklahoma. Originally I think there was minimal or no cost. We paid 400.00 for it in 2009. I think it is a thousand or so now? And no not covered by insurance.

The Leckman study actually tried to correlate worsening of ocd/tics with strep. They took kids diagnosed with PANDAS and non PANDAS with tics/ocd (TS kids) and repeatedly tested them for strep. There was zero correlation in the PANDAS kids between worsening symptoms and strep infections. Interestingly, several of the kids did show a correlation, but those were in the TS group. If you read the attached article, he basically debunks the diagnostic criteria for PANDAS. Even the 5 children that the original authors say met the criteria, Singer argues are problematic. He did come up with CANS, which is sort of a kitchen sink diagnosis from what I have heard it called. I would not tell your friend to expect a sympathetic ear if she is going for acute onset of ocd/tics/anxiety that she suspects may be related to a strep infection

Also, my nephew had the diagnosis of restless leg syndrome (along with ADHD and a bunch of other stuff) before he was diagnosed with PANDAS. When they went to do the sleep study, the doctor was a neurologist that switched to sleep medicine for 2 years while she worked out her non-compete in her contract from leaving her old job. She took one look at my nephew and said that is not RLS, that is chorea.

The direction of titers may be indicative. 400 really is not that high. In fact the NIH reference range goes above 600 for normal titers in school age children. Titers are highly individual. My son had an ASO of 480 a year after he had strep to our knowledge and an anti dNase B of 1920. My niece had positive throat cultures multiple times and NO raised titers! The fact is, the titers tell you something but not everything. Your child's symptoms sound like PANDAS. I would push very strongly for a one month trial of augmentin or azithromycin. If he gets better, you may have your answer. The Cunningham Test is preformed by Molecura Labs and is expensive. It will, however, give you a definitive answer if positive whether it is PANDAS. We did it on our oldest years ago to satisfy ourselves that his symptoms, mainly tics, were PANDAS. His Cam Kinase II (the PANDAS specific test) was high PANDAS range. . . question answered. I would check out the Pandas Physician Network and share it with your doctor. www.pandasppn.org. It is a website created by the top PANDAS clinicians and research doctors in the country. If you look on the left side for the board members, it is like a who's who. Dr. L wrote the steroid portion of the site (she told me). The website was created by doctors to educate other doctors. There is a flow chart for diagnosis and another flow chart for treatment. I would print both out, review them, and take them to your next appointment. Good luck!

He is still firmly in the camp of PANDAS is a controversial diagnosis, I think . . .

And just FYI, the immunodeficiency IVIG is low dose which according to most pandas experts can make pandas symptoms worse. Low dose is what is covered by insurance if you can meet the hurdles. High dose rarely is, but is what you need for PANDAS. Low dose stimulates the immune system, which is not what you want when you have anti neuronal antibodies attacking the brain. High dose calms down the immune system and is what is used in an autoimmune disease.

Omnicef is actually used with some regularity for PANDAS. Dr. Murphy has done several studies on it and according to Latimer there is some very good data on it. It is apparently Dr. Murphy's preferred antibiotic, or so I hear. The ped infectious disease doc that treats my sister's children told her to ask for Omnicef if they test positive for strep. It is in her opinion the best abx for it and no strep strains are immune. We have tics only now, and not terrible ones except they are facial so noticeable. We have tried azith, bicillin, and now Omnicef. We have seen a decrease/elimination in vocal tic (sniffing) with Omnicef. Rest is still the same. Augmentin (at 875 for 10 days for sinus infection) did nothing. I agree to try all abx before doing IVIG. Have you tried a steroid burst or taper? Dr. Latimer has us on an 8 week steroid taper for one child and 30 days for another. The 8 week one has not done anything (resistant tics 15 year old) and the 30 day one is for a kid with basically no tics after 2 weeks on azith so we are just trying to calm things down so he stays that way. HD IVIG is almost never covered by insurance unless you have Medicaid from what I understand so I would try everything I could before crossing that bridge!

First of all, I wouldn't worry about the statement "encephalitic" in nature. My understanding is all that means is that even if you remove the infection, at some point the immune system takes over and the brain remains inflamed. This is not permanent inflammation. Just means that there is no infection driving the bus so to speak - it has become autoimmune. I am curious though why Dr. L did not recommend plasmapheresis? In severe cases, it seems to be the thing that brings you back closest to normal with one procedure.

beerae22 - just FYI. Just because you are paying out of pocket for the visit does not mean you cannot file the visit with your insurance company. Many of these pandas docs don't file for you but you can file the itemized invoice with the diagnosis and cpt codes yourself with your insurance company for reimbursement. We did this the first time with Dr. Latimer. We weren't reimbursed because we had not made our deductible (which we made later in the year due to two tonsillectomies!), but we did file her bills and almost all of her charge (minus like 15 dollars) was credited towards our deductible. We have since met our deductible and just filed the itemized statements for reimbursement for our followup visits. Based on the CPT codes, I expect to get at least half back, maybe more.

No specific advice but I have a friend in a similar boat. Her son has been getting low dose IVIG and has worsened. Dr. L wants to do HD IVIG, with same concept - pay out of pocket and try to get some back. Obviously, it would need to be preapproved in all likelihood to get anything back, as IVIG (like surgery) is generally something that requires pre approval. The one thought we had is approaching it as a failure of the first treatment, which was approved, and requiring the high dose. Not sure if that would work in your case, but just a thought. You may need a doctor (either Dr. L. or the immunologist) to sign off on that concept and I don't even know if it makes medical sense but it seemed easier to me to shoehorn it under prior approval if possible. My insurance (Cigna) places specific limits on the max IVIG allowed for particular conditions last time I checked. So this strategy would not work for me (they only do low dose for CVID), but might for you.

My boys had 3 months of Bicillin shots. It did nothing. They are IM shots and are extremely painful!!! It is just IM penicillin. Wonder how long these kids were on it and how frequently? We were on the rheumatic fever protocol of once a month.