nevergiveup

One other thing that may also be playing into this approval is the new health care reform for children going into effect now, I believe it is vaguely written but research protocol must also be insured for children if justified by doc. SO swedos study, plus, NIMH's new letter maybe good enough. And the fact that other health care companiesinsure this illness may have tied there hands.They sure don't want bad pr or a law suit with regards to treating children. Again the wording is vague in the reform bill, but one thing that is not vague is children will be insured now, and not denied care. I think we will see many more approvals in the future. Denying coverage to sick children is about to become a big very detrimental for them. name='saidie10' date='19 August 2010 - 08:48 PM' timestamp='1282268906' post='80509'] Today we got the best news! Not only did my DS7 finish his second day of IVIG (did not go as well as the first...pretty bad headache and vomiting), our Case Worker with the Hospital who has been working tirelessly to get an answer from BCBS of Texas about covering or denying the IVIG walked in at the 11th hour with our answer - approved! I absolutely knew that it would be denied based on what I have read on here and online about BCBS. I was shocked...elated... ecstatic! Our Doctor insisted on putting PANDAS as the cause of my son's illness, immune deficiency/disorder, etc. I told him I was pretty sure it would be denied if he did this, but he insisted that his ethics would only allow him to put the actual thing we were trying to get the treatment covered for. So, there it was, plain as day in his cover letter to Blue Cross...PANDAS. I have sat in fear for a month, knowing it would be denied because of this, but NO, we have an approval!!!!! Along with studies, blood work, etc., this Case Manager also sent along the bulletin from November for United Healthcare stating that IVIG was specifically approved for PANDAS. I think this helped our cause! Don't stop fighting the good fight you wonderful parents!!!! The tide is a changing

I hope ur son got some prednisone it helps with side effects of ivig. Ask doc if not. He got a very high dose so these side effects are expected, steroids help calm them. quote name='saidie10' date='19 August 2010 - 08:48 PM' timestamp='1282268906' post='80509'] Today we got the best news! Not only did my DS7 finish his second day of IVIG (did not go as well as the first...pretty bad headache and vomiting), our Case Worker with the Hospital who has been working tirelessly to get an answer from BCBS of Texas about covering or denying the IVIG walked in at the 11th hour with our answer - approved! I absolutely knew that it would be denied based on what I have read on here and online about BCBS. I was shocked...elated... ecstatic! Our Doctor insisted on putting PANDAS as the cause of my son's illness, immune deficiency/disorder, etc. I told him I was pretty sure it would be denied if he did this, but he insisted that his ethics would only allow him to put the actual thing we were trying to get the treatment covered for. So, there it was, plain as day in his cover letter to Blue Cross...PANDAS. I have sat in fear for a month, knowing it would be denied because of this, but NO, we have an approval!!!!! Along with studies, blood work, etc., this Case Manager also sent along the bulletin from November for United Healthcare stating that IVIG was specifically approved for PANDAS. I think this helped our cause! Don't stop fighting the good fight you wonderful parents!!!! The tide is a changing

Wow, great! Everything is changing so fast! What dose did the doc do? It is frightening to think there are alternatives to help our children and they are denied to us, I cried on my dd's first ivig too. It is so comforting to know now u can go back to being a parent and let the docs actually be doctors.

PEX is swedos and Dr. L's procedure of choice. Immediate reduction of the dangerous antibodies causing inflammation in ur childs brain. If ur child is in the midst of a very serious attack I would not delay this. Treat with abx also. Dr K puts his kids in immediately for ivig, if a slot is available and follows with abx. If chop is offerring up PEX, I can only assume it is extremely necessary, pls no study has yet been done to examine abx vs pex and in what order. PEX should help immediately, (I hear no turning back of the pages, makes me wonder what this concept is actually?) Long term u may need to further examine his immune system and think about ivig. Many feel pex does not handle a chronic autoimmune disease well, ivig is better for the long haul. But some feel optimal treatment for this autoimmune disease would be PEX (immediate reduction in dangerous autoantibodies, followed by ivig (which will prevent the production of bad antibodies). Actually let's dream a little, for the severe cases maybe rituxan followed by three years of ivig, maybe a cure! Just a hunch) Follow ur docs orders for sure. PEX for swedo is the procedure of choice, clearly understand many here on this sight are never offered this procedure. Most are lucky just to get one ivig. Plz keep us posted. ote name='momoffive' date='18 August 2010 - 05:20 PM' timestamp='1282170036' post='80355'] I have been so confused recently with what my child's ped and psychiatrist are doing to treat him so I made an appointment to see Dr T tomorrow. Any pointers?? Things I should ask/know? My child's background is ASO titers steadily rising since January [and maybe before but no one tested]. This week they are 785 - in spite of a month of azithro. His symptoms are through the roof awful. I don't need to list them , you all get it I am sure. I just want him to be himself again. The only recommendation I have received is to give him the PEX. They'd be happy to schedule him, but I an nervous and want to be 100% sure. maybe I will never be?? Thanks!!

My dd gets ivig from an immunologist and it is fully covered by insurance. UHC pays for coverage. Initial consult with doc should also be covered. IVIG can run anywhere from 5 to 10 thousand, but immunologist should be able get it from insurance. IVIG helped my dd's ocd a lot.

Middle schoolers do not like to stand out!!!! But part of their development into high schoolers is learning how to start to embrace their own individualness. I find my middle schooler was the same. One big issue u have is if he starts to fall behind it is very hard to catch up and stress is not good for the immune system. IVIG changed my dd's ability to concentrate and her grades were better than ever though. I always look for a compromise that satisfies my dd's needs versus wants. We look to the school for extra support on her illness also. Obviously, the kids will ask him what the computer is for and why he gets to use it, if he comes up with a reasonable answer on his own, it will most likely never be mentioned again. Middle schoolers will ask for sure, so he will need to be prepared. My feeling is one day of stress is far worth one year of stress struggling daily in the classroom. Kids know who is struggling in the classroom also and that is a ongoing public embarrassment to some children. (Feeling confident about his ability with the computer could prevent this) This will not be the only time ur middle schooler does not want to stand out. It will come up a lot over the next several years, so I would pick the areas of most importance for his future and stand strong, and give in to the others that will surface daily. (For example: what u say to his friends, where u drop him off, what he has to wear, his hair, how u cheer for him while he play sports, if u call him "sweetie", if u laugh too loud in front of his friends, if u tell a stupid joke in front of his friends, if u cook the wrong food for his friends, If u come in to see a teacher and u stop by his locker,(the very worst possible embarrassment any middle schooler could suffer) if he has to take any medicine during lunch and his friends know. If he is late for school or an event. Etc..................., actually I am not sure there are very many things that don't embarrass a middle schooler! name='norcalmom' date='17 August 2010 - 11:30 PM' timestamp='1282105810' post='80272'] anyone else have this symptom after ivig? Everything else is good - we haven't had any terrible turning back of pages. we saw some head shaking tics the first 3 or 4 days that he hasn't had in a while, but very minor, and gone all together now. In the past ds only wet his bed if going into exacerbation. its been like every other night since the ivig. Its weird. Everything else is good - mood improved but its a "saw tooth" recovery . We are seeing some moments of great happiness, and less anxiety, but he's still having irritable times (just not all the time anymore!). He is looking into the sun a lot less, but still a few times a day... I counted 28 what we called "sun tics" during a one minute video clip I took two weeks before the ivig to send to dr k...so that is huge improvement. He was not in exacerbation when we did ivig. Can't imagine how hard that would have been stress wise. HIs baseline of symptoms was creeping after each virus last winter, and the sun thing was one of the things that came back after an exacerbation and stuck. Between that, and finding out that a specific part of his brain is not working at all, we decided to do ivig. OH - I have another question too - we got recommendation for a 504 plan from psychologist, but ds wants NOTHING to do with anything that will single him out, like using a laptop to type, or extra time on tests. He was distrught that I would not allow him to take the advanced math, and is insistent I not tell any of his teachers he has pandas, because he thought that his 5th grade teacher treated him differently last year (teacher knew, and was GREAT, but yes, he might have had a little soft spot for my ds...his one son was diagnosed with epilepsy 6 months before) so, I dunno what to do. perhaps the ivig will work, but will it improve his math/handwriting fast enough that he won't need the support from 504 plan that was recommended (photocopies of notes, a hard cory of anything written on board that they are suppposed to copy, an alpha-smart or lap top to type instead of write,nothing major) DS is pretty anxious about middle school, and desperately wants to fit in, so do I let him struggle and fit in, or do I single him out and get support. I've told him several times that he is not to get stressed about school and that health is first, hobbies are second and school is third this year. It makes him feel that others will think he is stupid if he has these things. I'm torn. I don't wnat him to feel like that - don't want the stress of it, but the stress of struggling because you cannot copy letters and numbers or write fast enough to take notes is stressful too. I'm in wait and see mode, unless I get some sage words from anyone out there thats been through it.

Momtopandas, Sounds like subq maybe a very good way to go. I truly believe my dd's chronic infections put her immune system into autodrive. Ur kids are very very little, and they will have infusions for a long time. U can always go back to ivig if needed in future. I would definately give it a try, I could never do it though my dd's autoimmune blood markers show a serious ongoing autoimmune disease and we are still fighting to get her to 100 percent, we are close but not there yet. If she was 5, and this was her first attack, and she recovered, I would want to try subg to prevent infection.

Momtopandas, Sounds like subq maybe a very good way to go. I truly believe my dd's chronic infections put her immune system into autodrive. Ur kids are very very little, and they will have infusions for a long time. U can always go back to ivig if needed in future. I would definately give it a try, I could never do it though my dd's autoimmune blood markers show a serious ongoing autoimmune disease and we are still fighting to get her to 100 percent, we are close but not there yet. If she was 5, and this was her first attack, and she recovered, I would want to try subg to prevent infection.

Sawtooth recovery. That's sums it up from my experience. After ivig is a hard time. If the trend continues downward maybe another ivig will help a lot. My dd didn't start to see dramatic benefit until 4 to 6 months after monthly ivig's and still her disease is sawtooth, still impacted by infection, like all autoimmune diseases. It can be sooooo disappointing to see severe symptoms again and scary. It may disappear as fast as it came.

Laurenjohnsonsmom, Will u be doing the monthly 1.5 over a two day infusion or will u do this in one day? Why so high monthly? I am hoping docs will start to look at trough levels for these kids so others can better understand dosing? Have u done toughs on Lauren post ivig. I heard that in order to maintain an autoimmune dosage IGG tough should never at any given time drop below 1700. Otherwise then this is not a strong enough dose to redirect the autoantibodies. Could u run this by Dr. B and see what his opinion is on trough levels for autoimmune disease. (Not trough levels for immune deficiency level, much different) I think this could be a better way to determine dosage and frequency and it would be child specific since kids tend to eat up immunoglobins at different rates. Thanks!

Vicki, u are amazing! How come u are always the gal that finds these things first in the media. We are so lucky to have u on the forum. I like how they mentioned the "vocal families" that's US!! Thanks as usual for always keeping us up to date!

Buster, Has anyone ever looked at whether teenager with anorexia, had saw tooth symptoms since childhood? Just wonder since food is a big issue for my dd and has been Very relapsing remitting since she was 7 years old? Thanks!

Right now according to my doc if u do infusions every 21 days they are getting probably enough igg to help with the autoimmune response. My dd has CVID and a subclass def also and she suffered from Chronic infection. SubQ according to my doc will not treat autoimmune diseases and is not recommended becuz of the lower IGG levels. Interesting though one of my docs fellows (residents) was pushing this idea on us(subq) before we saw her and she said absolutely not, it will not help autoimmune disease. Does ur doc have kids with pandas on subq? How are they doing? I can only speak on my docs experience with the immune system and autoantibodies. She is a leading expert at our Bone marrow transplant oncology division. Treats kids with immune defs and autoimmune disease also.Has multiple b cell drugs and chemo drugs like rituxan she uses on her kids. Is first doc in world to do gene alteration(therapy?) in children. I find her background and expertise in the immune system substancial. Since my dd has autoantibodies She clearly said subq will not be an option. I honestly find it very hard to doubt her knowledge, but this is a new disease and who knows? She has treated three kids with pandas, one from the original swedo study who is now in college doing well, in complete remission and off of ivig. (I know the mother) Maybe ur kids had their autoantibodies reduced due to the high dose, (this does happen for younger kids after high dose) now the lower dose is just to cover their CVID. Subq is suppose to be easier, u can do it for them at home (no home nurse), less sides effects and more stable igg levels. Having a proper immune response to infection may prevent the autoimmune response from reappearing?? But if pandas reappears u may need to do another high doseIVIG since subq will not help with the autoantibodies. If their trough levels now are dropping too low with ivig towards the end of the month, then yes subq may prevent more infection and maybe great. For me its the autoantibodies and I am told she must maintain igg levels above 1700 at all times. If u get a chance ask ur doc where this data is coming from and if he is familiar with this theory? Thanks! quote name='momto2pandas' date='13 August 2010 - 09:28 PM' timestamp='1281752938' post='79696'] Is there any solid evidence that SubQ won't work in PANDAS? I ask because we're thinking about moving to it. I was scared of anything below 1.5 g based on the info on this board, but I have to say that my kids are at 100% now with 0.75 g/kg every 3 weeks (we expect this interval, unlike many here, because my kids have CVID [in one] and subclass deficiency close to CVID [in the other]). Their doctor follows their trough levels and I don't know what they are, but whatever they are, it's working. Based on this, we're thinking about moving to SubQ at an equivalent dose, for convenience and because it's supposed to be better protection against infection. So I am very interested to know if there is actually evidence suggesting that subQ is bad for PANDAS, or if that's just a guess. Our doctor treats quite a few PANDAS patients and he seems to think it's a good idea - that we have a better chance of eradicating and preventing new infections with strep if we keep the levels more steady. I think it's a balance and may depend on whether a child's main issue is not being able to fight off infection, or having a massive autoimmune response to infection, even if they do fight it off. In our case, PANDAS was always fairly mild and my kids didn't have very high levels of autoantibodies (based on Cunningham, anyway); the problem was that the kids could NOT get rid of Strep so it became chronic. Maybe that's why as long as they're getting enough to keep infection at bay, they're good. For others with normal immunity but a big autoimmune response, the main effect may well be suppression of autoantibodies, which needs a higher dose.

Coco, did u switch to low iga ivig, also? And what is ur lymes doc opinion on using steroids with lyme? Glad to hear ur are doing so well. We still do monthly switching to every 21 days. If we don't see complete resolution soon, we will be moving to Dr B's protocol.

Its an alternative to monthly IV IG , subQ weekly infusions. Great for immune deficiency but not for Pandas.

Eamom, The right dose is key, but what that is for each child may differ somewhat. High good but not too high to create a massive immune response and fever. Too low will stop working pretty quickly. So I have been searching for literture to read so I better understand what my doc says. (She's one smart lady) She says that igg levels must be maintained above 1700 to substantially redirect the autoantibodies. She says this is the trough levels used for autoimmune dosage levels. For immune deficiency levels they do not want to see toughs below 700. Actually for subQ infusions they try to keep iggs at a steady state above 800.BUt for autoantibody diseases subQ immunoglobins won't work, and troughs need to be above 1700 at all times, only IVIG will do this. (Although my doc believes in the sialic acid helps stop production of autoantibodies, she also feels there is lots of evidence to suggect igg bonds to the autoantibodies and redirects them. So dosage is not based off size of dose but rather how fast u burn up those IGG's.) I know my dd drops down below The 1700 mark approx 7 or 8 days after 25 grams of ivig. So she needs lots more. Interesting enough that's when I start to see symptoms again. Also doc says half life of ivig is 21 days not 28, like many think and use. So I have read many articles that is takes approx. 48 hours to 72 hours for ivig to start to bond to antibodies. Which is about when each month I start to see my dd dramatically improve. Then one week of total symptom remission, and then after a slow accumulation of symptoms again until next dose. Do u know of any literature that documents the right trough levels for ivig and autoantibodies??? Maybe that's why Dr K says that the weeks 4 through 6 are so ruff becuz the igg's has dropped below levels sufficient to redirect the antibodies. Sorry if my writing is terribly confusing, but its all second hand info and I am trying to understand it better. Also some of the monthly cases like Coco and Keith and Elizabeth had special circumstances, Coco found out her dd had an IGA deficiency, maybe causing symptoms to worsen with ivig(she needed low iga product instead) and keith and elizabeth have lyme. ( This lyme stuff is very scary,)

Melanie, Don't u mean every 21 days. Every 28 days is for immune def's, every 21 days is for autoantibodies. U know I mentioned the turning back of the pages to Dr. L and she looked at me like I didn't know what I was talking about. She said that some ivigs create a large immune response (fever etc..) Which of course will cause an increase in Pandas symptoms, just like any other time u stimulate the immune system. My dd does not do well when she gets a fever from ivig. Her panda symptoms flair. This is why she cannot have the super high doses. I guess time will tell if we need to move that direction, but for now, she is happy with medium doses every 21 days.

Too many acronyms. It would be more significant if it was Group B strep. But I was refferring to Guillion Barre Syndrome. Immune system attacks schwann cells which make myelin. The similarities are the sudden onset, children do not get chronic condition, infection or vaccine triggered, and it is eleviated from PEX and IVIG. Also reexposure to vaccine or infection could trigger another attack. Sorry for all the confusion. Where are the real scientists like Buster. Looking for any comments!!!

Guillian Barre Syndrome (spelling?). It is an immune reaction against vaccines and flu's and infection. Attacks come on very quickly over a week like in Pandas, Except in GB they think the immune system is attacking the Schwann cells, in the myelin causing sudden paralysis and weakness, where with Pandas it is the basal ganglia. MS however is a different mechanism than GB.

PM me if u r from the midwest.Here's kind of my comparison for this illness. GB comes on strong, is infection mediated and is stopped in its tracks with PEX or IVIG. Can leave some residual weakness though is usually curable and eliminated with one treatment, but patient are told no more vaccines. If it comes on again or in adults is can turn into a more chronic illness called CIDP. Then the only way to eliminate this illness is with an autoimmune dose of ivig every 21 days. Kids apparently don't get CIPD (? CIDP) only GB and its helped with a one time intervention. However adult can get the more chronic cases that never end. So if our kids keep getting re exposed the disease goes into a chronic state just like GB or if our kids pass through puberty then in theory their immune system is "like" an adults and now they have a more chronic autoimmune disease. In GB the triggered is removed by eliminating the flu shots, however being reexposed to any flu then could trigger another attack. Its so similiar, I just don't know if GB is an autonantibody illness also. So could we have PANDAS like GB in children not chronic and also in adults sometimes not chronic. But with re exposure the illness becomes chronic like CIDP. (Hence why kids with immune deficiencies have greater illness and more chronic Pandas becuz of constant rexposure and stress on immune system). I have heard that the older kids are the hardest to get back to baseline with Pandas. Could the condition now be chronic and need to be treated as such? Not one or two ivig's? U know MS never had much luck with ivig either (for last 10 years) until just recently, they up dosage and frequency and they are seeing ivig really help MS now. so you are saying that it may be monthly for 7-8 years, even possibly lifelong? what state do you live in..where is this doc?

Keith and Elizabeth, Oh my gosh, have we been doing this for a year now together. I want to add also that all views are subject to change. Lymes, Strep, Staph, Lupus, Myco. I am not sure if I have found the root cause but I sure will keep searching. Totally agree!!! We have come so far, and we are starting to see progress!

My dd started with a pandas doc and a one time infusion. Cannot say I was satisfied, from one ivig, cuz my dd had a horrible overnight occurance and looked very SC. So with SC more than one IVIG is needed. But she didn't receive another ivig until 5 months later. At that point she had an immune deficiency (low IGG and low IGM) diagnosed so monthly (28 days) was allowed by insurance. Since I was most concerned about her autoantibodies and Pandas I continued to consult docs. Dr B was a good option and we would have liked to go with him but found expert locally who worked with kids from Swedo's study 10 years ago, Obviously she has a different protocol than Dr. B but after looking into lupus and other autoimmune diseases (CIPD) I felt this protocol may work well. So do the docs in my family. Looking to eliminate tics and all residual ocd. With infection she will relapse so hopefully with the change to every 21 days, ivig will minmize inflammation. If not will try Dr B's protocol. I know Melanie's son Danny does high dose every 21 days also. I believe this is the dose leading immunologists are also using for autism now. I know they are seeing it very helpful. It is for ADEM, MS, Lupus, CIPD, and other autoimmune skin conditions. Dosage just depends on how fast the kids eat up the globins. (Maintain IGG levels at 1700 or above at all times) Obviously, if they can eliminate symptoms at a lower dose that's better on side effects for the child. My dd burns up the iggs pretty fast cuz she is an athlete. My doc says with low dose ivig most see a benefit for approx 9 days after ivig and then symptoms return. So higher more frequent doses are needed. But as coco stated her dd didn't do well this way, so I think it depends on the child, the immune reaction the ivig is creating and who knows what yet??? This protocol works for several I know, but not all.

My doc has treated several pandas kids. Her first was 10 years ago one from the original swedo study. The kids had ivig for approx. 7 to 8 years. Lifelong, maybe just depends on symptoms and blood markers. My dd's ANA is reduced from 2560 to 160 hoping to eliminate it. Her symptoms correlate directly with an elevated ANA, she looks more lupus than Pandas on paper, but her symptoms are only tics and ocd. No other lupus signs. High anti dop 1 antibodies. My doc feels these kids have other autoantibodies some we cannot even measure at this point. when i saw doc b about a week ago...he said he would try to get us approved for 4 treatmenst..if the first wassn't doing what we needed..to not delay and do the second 8 weeks later.... will your dd have to have monthly treatment for the rest of her life...or is this something that is hopefully only for year or 2 and then taper down or eliminate them????

Hi, we had one high dose ivig and I can say I could have written ur exact same post a year ago. By week 12 though she seemed better but not near Where she is today. She started to relaps around week 20 very badly so we started monthly ivig. Lower dose becuz she had a bad reaction to the intial ivig. We have slowly increased her dose over tha last year. I can say that after a cold or virus, I can see the ivig stop symptoms completely. WE are moving to every 21 days to ensure we are redirecting her autoantibodies at all times. My dd appears to have an autoimmune disease which needs constant ivig to manage the symptoms. Hey guys where are Dr B's patients. - we never hear from them any more Lauren J, ellen, coco, and many more!!!! Are the IVIG's every eight weeks helping a lot!! I know Melanie, peglem, shaesmom, and myself are seeing improvement with monthly ivig. My dd is night and day from last May, still some minor tics and ocd but the healing is obvious. Her immune doc says her IGGs must remain above 1700 to manage redirecting her autoantibodies so she receives ivigs at an autoimmune dose, every 21 days. We will be measuring her IGG's to ensure she is always above 1700 iggs for the next two infusions every week. If her level ever drops below 1700 the immune doc will increase dose until we have the right igg levels consistent between infusions. I think for some kids this is a chronic condition, and more frequent ivigs put the disease under control but I need more parents, like Dr B's parents, to chime in hear if they agree. My dd did not see huge gain (small every month) till about 4 to 6 months, with a set back once at 7 month due to high fever, lung and sinus infection. Maybe Dr B's patients are out enjoying the summer this summer. I hope so!!

Meg, Its not about us, its about the rest of the world. Most people are familiar with Schizophrenia and OCD being neuropychiatric. But it is not in the name of the illness. We alone will not change the stigma of mental illness in our community. Our children have an autoimmune disease that causes neuropsychiatic symptoms but the autoimmune condition also causes other symptoms too. Our children should receive the same care and respect as a child with diabetes or lupus. Both these illnesses have neuropsychiatric symptoms too. I am not tyring to offend u, but teenagers can be cruel and I do not think us alone will be able to change that. Whether u like hearing it or not, I promise u the stigma of this disease will be impacted by what it is named. And that's one discussion that is fair and needs to be addressed. Pediatric autoimmune Neuropsychiatric Complex, is vague and I am sorry but I can see the translation to Child autoimmune crazy complex. Its not nice, but if we can influence this process I think we should as least try. Many read this forum. Our children deserve to be diagnosed with an autoimmune disease not a psychiatric one.