mom md

Dr. Corbier in Concord also treats PANDAS, including IVIG.

My son has very high titers. When diagnosed his ASO was 1450 and his antiDNaseB was 1750 I think. Latimer said we were in the top 2% of titers. After PEX we were under 100 on both. After relapse we were 500 and 700. After IVIG we have fallen. I think the titers do take time to fall. We are slipping too though and I am sure we are higher now. We are going to check them at his next IVIG just to minimize the blood draws. From my understanding, with flares the antiDNase B is the one that goes up (especially if it is a PITANDS picture and the stimulus was not strep). The immune system churns out strep antibodies in confusion. In rheumatic fever this is the one that is really elevated. I think the levels indicate that it is an autoimmune disease more than an infectious one from a strep infection. Basically I think anything that stimulates his immune system causes a rise in his antiDNaseB level. This may not be correct but this is how it makes semse to me.

This just shows the discrepancy between insurance plans. I talked to my hospital's Cigna representative and she said they cover medical but my hospital has a contract with Walgreens for drugs and I would need to ask these questions to the pharmacy benefits manager at the hospital. She did say Cigna would cover the facility fee, etc as long as I used my hospital. The pharmacy manager said the hospital is huge and self-insured so it buys its ivig in such bulk that it would be 100% COVERED WITH NO LIFETIME MAX! Unbelievavble. I can't switch uneil January 1 but believe me I will be switching. In the meantime I will just battle BCBS. Makes you think PANDAS parents should just go get a job doing something in a hospital. This reminds me of when I trained at Wake Forest/Bowman Gray. Employees of the hospital had the hospital insurance and IVF was covered 100% as many times as you wanted to do it. I actually had a patient who started working for environmental services and cleaning rooms to get it.

It is called docsavings.com They are easy and cheap. I do them at home to see if it is worth taking them in.

We just had our IVIG denied by BCBS(said it was experimental). They had paid for PEX and two IVIGs already which is strange. I think they finally connected the dots. We are waiting for the appeal. I realized today I can change to Cigna at work? I have a call into the liasion between my hospital I work for and Cigna but wondered if anyone had any input. PANDAS is on the approved list for plasmaphoresis but not IVIG.

Thank you for everyone's concern and support. His doctors were not surprised he is having issues. They seem to think we may need it twice a year to keep him at baseline. They are openly honest that they don't know but think it may behave like other autoimmune diseases with periodic flares. They hope with these IVIG treatments his good months will slowly get longer and things may improve at puberty. We have a pediatric infectious disease doctor we are seeing and we can definitely look for other causes. His symtpoms started right around allergy season. Of course, two kids have already had strep in his class (that is the ones we know of at least). We are covering him for a strep infection but I think it does not take much to stimulate his immune system to start him making strep antibodies. His titers are always way off the chart when he flares. Dr. O ordered the IVIG at 2gm/kg but Dr. C is going to bat also. They said today they will call. I will keep everyone posted. Carter does have immune issues but does not fit in a nice deficiency box. They are using that code too.

Thanks for your reply. Just like I said when I opened the letter,"they messed with the wrong mother." I will become a constant thorn in their side.

I did call Coram and they quoted 8000-8500 which is exactly the quote I got from another IVIG home infusion company. I know they could argue it did not work but here we are 6 months with basically NO symtpoms until recently. That is the longest stretch of normal we have had in several years. He did have chorea and I think that is why they have picked up the bill so far. The chorea is still gone but I know we are headed that directoion. I have seen some sporatic movements but nothing that does not pass quickly. I refuse to wait and get that bad though before we treat him. My husband agreed tonight we would try these tactics and then if they fail or they are just taking too long we will move forward. I don't know if I could successfully sue but I may inquire with my sister and father who are both attorneys. Maybe just a letter on letterhead might get their attention!

My oldest son is beginning to go down the path again. His symtpoms resurfaced in August (5 months after his last IVIG). They were mild but the three specialist he is seeing here were all in agreement that he needed another IVIG. BCBS of NC then denied it saying it was experimental. They payed for PEX and two IVIGs already but I think they finally connected the dots. All three doctors have written letters on our behalf and now we are waiting. I e-mailed them tonight to see if someone would just pick up the phone and call. My next step is to request a peer to peer review, report it to the insurance comission, and then sue. He has started his repetative touching things again (number 5 is the current number), and describes this "string" attached to his back that pulls him back. Very wierd but exactly what he described before he had his bad episode last November when he started falling down and had chorea. He has also started having severe nightsweats again, the dark circles, etc. My question is, if I pay out of pocket with my credit card does it make it more difficult to get it retroactively covered. My guess is yes. I would also think it drops down the doctor's priority scale when they know he has had the IVIG.

We found out in June my second son has it too. His titers were very high and his camkinase was 169. His brother's was 201 and his titers near 2000 so at least we may have caught it early. His immunology workup was also normal too unlike his brother's which was very abnormal. My hope is that we caught it early before his immune system got completely off track. We started azith 250mg qd and after 5 days his symptoms were gone. I still see a few mild ones occasionally but they are very manageable. We saw the neurologist this week. She said to keep him on azith, be very proactive if he gets sick, try to keep his immune system up (sleep, vit d, good diet,etc), and at the first sign of symtpoms ramping we will test him for strep and if negative hit him with a steroid burst. If that fails or does not hold, IVIG. I do feel better though knowing he his "looped" in with the specialists and I can call them if we spiral down. My youngest (4) has a sporadic studder and some mood swings but her titers are negative. I am watching her though like a hawk. My son though who has had PEX, and two IVIG's, is now 6 months out and we are seeing minor signs. Two kids went out of his class this week with strep. We had already planned on another IVIG but are just fighting the insurance company.

Have some suggestions in Charlotte. Dr. Maeve O'Connor immunology (likes to work with a neurologist) Dr. Tess Nelson-long wait but worth it Dr. Jean Corbier- opening a "neurology wellness center" with three pediatric neurologist in the next several months. Plans to focus on autism and PANDAS!!!! Right he is booked out till Feb in his office but he is trying to get this up and running fast.

Yes. It is very hard to do. We have come so far. Today I saw my son's neurologist (Dr. Corbier) who said he would write the letter tonight to help us get IVIG. He also said he was opening a "neurology wellness" center for kids with autism and PANDAS. He also said he was froming a PANDAS support group here. Wow...he beat me to it!

I googled United Healthcare IVIG PANDAS and you can pull up their IVIG statement. It is all in there. Interesting though, Aetna reports an article by Orange 2006 as why they won't pay for IVIG and United Healthcare posts it as why they will pay. Makes no sense.

I had mine out last year...I consider myself tough but it was way worse than I predicted. At day 12 post-op I had to quit taking pain meds because I needed to go back to work but I needed them for several days more. The ENT told me one of the reasons they hate doing adults is the reimbursment is awlful. Most adult patients are incredibly high maintenance post-op and often have to be re-admitted for pain control. He said definitely not worth all the effort. Bad medicine I know but at least he was honest.

I also think it is important to control the things you can...your sleep, excercise, and what you eat. At least if you keep these things constant you are better off as the disasters hit. I also think talking to your doctor is important. Chronic stress can deplete your seritonin levels and consider a natural supplement like 5HTP or a RX SSRI can help. Wine is good too. Unfortunately this disease is a marathon not a sprint. I also think there is comfort in knowing you are not alone. We all get it. When someone reaches out with a cyber hug it really helps so reach out to others on your better days and lean on others when you need to.

Possible codes 323.8 encephalitis 323.9 unspecified cause of encephalitis, myelitis, encephalomyelitis 323.41 encephalitis and encephalomyelitis due to infection 348.30 encephalopathy unspecified 392 rheumatic chorea 392.9 rhuematic chorea without mention of heart involvement 333.0 other exptrapyramidal disease and abnormal movement disorders/ includes: other forms of extrapyramidal basal ganglia, or striatopallidal disease 279.3 unspecified immunity deficiency 279.4 autoimmune disease not otherwise specified 279.9 unspecified disorder of immune mechanism

Possible codes 323.8 encephalitis 323.9 unspecified cause of encephalitis, myelitis, encephalomyelitis 323.41 encephalitis and encephalomyelitis due to infection 348.30 encephalopathy unspecified 392 rheumatic chorea 392.9 rhuematic chorea without mention of heart involvement 333.0 other exptrapyramidal disease and abnormal movement disorders/ includes: other forms of extrapyramidal basal ganglia, or striatopallidal disease 279.3 unspecified immunity deficiency 279.4 autoimmune disease not otherwise specified 279.9 unspecified disorder of immune mechanism

My son is having a severe fear of bees now and he would not swim in the lake this weekend because he was afriad of leeches. We are waiting for our IVIG approval but needed it yesterday. It is so sad to see them miss out on so much due to these irrational fears.

All good ideas...I tried to find the health care reform info on the internet to print out that too. Do you know where I would find it?

I also want to add my 6 year old son has been diagnosed and is mild now but may need IVIG down the road. To think of two children possibly needed 2-3 treatments a year each is overwhelming without insurance coverage.

BCBS of NC has paid for plasmaphoresis and two IVIG treatments. Believe me too when I say I know how lucky I am and how blessed we are to have come as far as we have. Now we are just trying to stay here. We are seeing a few symptoms 5 months out from our last treatment, though mild, and our doctors here want us to do IVIG again. His latest titers were still elevated so he is still making them but they are lower. Our neurologist here wants him to have it every 3-6 months and our immunologist says probably every 6 months. Got the letter yesterday saying BCBS denied IVIG because it was experimental for PANDAS. We have never used that code before so they must have seen it somewhere in his record. I e-mailed my immunologist and she is ready to go into battle next week for us. I know I have a good arsenal...NIH statement, Swedo's study, United Healthcare's IVIG list which states it is proven to work for PANDAS, a letter from all our doctors, actual proof that IVIG works for him and obviously no other good alternative, etc. Does anyone have anything else? I looked at what is required to get "experimental" things covered and I think I have enough but I just want to make sure. My immunologist also e-mailed me tonight and asked me to find ALL other diagnosis codes that have worked for people... I know autoimmune disesae nonspecific, post-infectious encephalitis, and chorea. Can anyone add to this list?

Our second son, age 6 has also been disgnosed with PANDAS. His symptoms really started last year. He had some shirty chewing and BIG mood swings. His older brother was really sick so I thought he was having "middle child" issues and trying to get attention. He had strep skin infection in the spring of last year which totally freaked me out because my other son had PANDAS. That fall he got H1N1 and developed pneumonia within 24 hours. Very scary. He went back to school after the holiday and his teacher said he was "jumpy". I knew what she was implying because she knew our story and had my 9 yr old in kindergarden when his issues started, but mentally I could not go there. Things got worse but I was still in denial. In April we saw a new neurologist for my 9 year old and she specially asked about his siblings. She said it was not uncommon to see siblings infected. Within a month from that appoitment I could not deny what I was seeing anymore, He had major rages, sleep disturbances, inability to look you in the eye, unfocused, and could not sit still. I checked his titers and his ASO was 400 and his antiDNase B 980, his CamKinase II was 179. Bingo. We started him on azith and within 4-5 days most of his symptoms are gone. We see the neurologist in 3 weeks and will see what she says. I would like to try steroids first if needed. I have a third child too that is four, She stutters a little but only occasionally. I am upset, but I feel so blessed to have caught his early.

My son is 9. He started with svere ear infections the first year of life, then night terrors at 16-18 months. VERY high maintenance child. At 4-5 yrs he had rages and mild OCD, axiety. At 5-6 he started with ADHD type behavior(poor impulse, mood swings, hyperactivity, inability to sit still, sleep issues). This all waxed and waned and then at 7 he started with tics and then chorea. We had the diagnosis at 7, started azith then, did PEX at 7 1/2, IVIG twice age 8. He turned 9 in April. It has been a marathon. We saw 14 doctors in two years before we figured it out. We were given risperadol, clonidine, SSRI's, klonipin, clonidine,adhd meds, parkinson's drugs, etc. I was given perscriptions for many that I never filled. I keep saying, "I am not giving this to my child because we do not know what we are treating. We are treating the symptoms, not the problem." Now he is normal on an antibiotic and some supplements. He takes nothing else.

He takes azith 250mgqd. The pediatric infectious disease doctor said the strep prevention properties are not as great as penicillin but the immune modulating factor is worth it right now. She wants to reserve the cephlasporins and augmentin in our back pocket if we get strep. At some point we may change to penicillin but I do not want to change anything now because it seems to be working. She did want us to check his hearing twice a year. Very rarely the macrolide drugs can cause hearing loss. Typically it is clrithromycin but she wants to be safe.

I wanted to add though that we did PEX because we were desperate and Dr. L also helped guide us in that direction. I don't want to imply at all that anyone should do PEX before IVIG like we did. I think IVIG is definitely a great choice. If things get worse that is usually a sign that it is doing its job.