nevergiveup

Minimize side effects while maintaining high levels of immunoglobins. So high dose frequently, she will get about 1.0 to 1.2 grams every 21 days once we are finally ramped up. She receives increases in doses once she has adjusted to previous dose with no side effects. (No headache or fatigue whatsoever)

Igg levels maintained at a level of 1900 or 2000 or 2100 need to measure trough levels to determine which level eliminates symptoms. My docs treat serious immune defs, autoimmune disease, looking into issues like epilepsy, pitands, lupus, chrohns, autism, all with high igg level dosage of ivig, seeing lots of promise. Experimental in dosage and protocol not in the use of ivig. Ivig is used in all these illnesses for a while. Just trying to establish effective measurable dosage. Not to mention help some very sick children whom have extremely debilitating diseases and whoms meds normally used have more serious side effects than ivig.

B cell panel, done at BMT clinics and immunology def type docs. B cell panels look at birth to maturity of b cells development. Each development stage has different issues, diseases associated with it. Overactivated mature b cells means b cells are attacking body. That's all I know since that is what they found in my dd's test. Complicated though, cuz even my father whom is an allergist immunologist is not familiar with exactly the whole science. As for the rituxan drug, we are using it as a possible last resort, doc says ivig levels maintained at 1900 show promise. Safest option for now. They have several kids all improving, of course everything is experimental. Other b cell drugs may help, still though waiting another year to see if autoimmune dose of ivig will put her in remission. Right now she is still not at a high enough level, by winter she will be.

My doc says no, ivig just redirects antibodies. Most likely won't change memory of b cells. My dd has had a b cell panel and it shows overstimulated mature b cells(indicates autoimmune disease), high amounts of nymph b cells, anyway, no the only drug I have heard that can wipe out the b cell memory is rituxan, b cells maintain memories some a year some years, so. Rituxan, a multiple myeloma drug, also used very successfully on lupus kids, and autism. One year to wipe out b cells, followed up with three years ivig to build back up immune system and memory.

There are two theories behind how ivig works for autoimmune disease, one that in extremely high doses it temporarily shuts off production of autoantibodies. The second theory which seems to hold more clout with the rheum and immunologists is that antibodies bind, they bind to viruses or whatever to mark them as invaders. However they also bind to each other(new science) thereby redirected the antibody so that it doesn't bind to proteins in our body. I am assuming this is what is referred to as a monoclonal antibody, which is what they are trying to isolate for drugs for ms and lupus. Anyway, I am not sure I am explaining this well, but the idea is ivig at a high enough dose can bind to the bad antibodies and they then do not target the body. For autoimmune disease this binding process takes up to 72 hours after ivig to see impact on symptom remission. The "turning back of the pages" seen by some but not by all has not been clearly explained, nor is it seen in other autoimmune disease that I know of that are treated with ivig? My immunologists goal is not to have this happen, rather slowly ramp up my dd's ivig levels monthly so that she has no side effects. Its a long wait for sure, but my dd always see's improvement after each ivig, her worst time was when she received the first dose, at high dose, and she had very strange symptoms surge, it was scary, and then although we saw some improvement about 10 weeks post it was not that great! So now we are trying a high dose frequent protocol and she has no turning back of the pages. Now as for just a mothers gut feeling, if one to two weeks post ivig the symptoms reappear, then I think you need additonal ivig until symptoms are gone!

Low dose does not stir up antibodies, what science are you talking about? And ivig does not kill antibodies, it attaches to antibodies and redirects them. (In theory). How low was your low dose?

Demylination is seen on mri's. This is a very serious disease warrants immediate attention. If you suspect this I would see a neuro, treated with 2grams per kilogram of ivig monthly.

Insurance does not regulate dose, doctor does, if u have cvid diagnosis, your doc can give dosage of choice.

Is that what the igenex test is testing igg's? Yes my dd gets every 21 days.

Since I do not know whether the test is looking for antibodies or parasites with "tails" or bacteria!! But I would like to know about the false positive or false negative??? It may allow me to test without stopping ivig, since I do not have any other option. So if you could asks your docs and let us know I would greatly appreciate it. I was under the impression by Dr B and Dr T after two different consults that I could test anyway, makes me think false negative, so if she tests positive then she definately has it. But if she tests negative, she still may have it anyway. Any feedback?

Still looking for feedback on how ivig distorts lyme test results, false positive or false negative? Anyone ????? This is important, its like taking the IGG tests after your child has taken steriods it may show a child is immunodeficient when they are not.

It is so exhausting to think that after years of fighting for pandas treatment, that we have been going down the wrong path. I am interested in investigating whether my dd has any lyme type diseases, I know about the igenex test, but I am still looking for info about ivig and testing. My dd receives ivig every 21 days for an immune def and autoimmune disease, (nonspecific) if I test can the ivig create a false positive or false negative? If false negative, I will still go ahead and test, obviously with false positive it will be misleading and I could be treating an illness that is not there. One thing is for sure about treating for lymes is if high dose abx helps pandas, this is one way to secure treatment. Please don't take that the wrong way, all I am trying to say is, if it helps, it helps and that's what matters becuz we are not docs and from what I gather even our docs do not understand pandas or lymes or nonspecific autoimmune disease or SC or whatever it maybe.

Ok msss mathmatician, then crunch all the numbers you want, you know they don't mean much. So why are you using this data to contradict anything and everything said on this forum. My neuro, not the greatest guy, also has his masters in statitics and he like yourself has concluded that if you look at all of the studies on Pandas, which are not statistically not sound, no blind, not replicated, number of participants, there is only a 4 percent chance pandas even exists. So all that Math and medical experience, and guess what HE'S WRONG!!!! I am tired of having to justify everything to you, you counter with strange assumptions and throw numbers at things to justify your points that are misleading. We have long been down this path of analyzing every statement in swedos studies. Many on this forum including myself have talked with swedo. If you want even better info watch her autism conference on internet where she talks in detail about about the study and individual children. No one is saying that ivig or pex do not help, just that pex was seen to help tics more. Anyway, I am glad you are on this journey, to really look at the numbers, I myself have a statistics background, and did the swedo review 6 years ago. But Buster was the one whom pointed out the tic data seemed stronger with pex. Latimer also says pex helps tics. There is a wealth of info on this forum, don't ignore it or counter always like "you" have all the answers, becuz the truth is all we have is our experience and these studies are still experimental, and these treatments are too. I hope you find help for your child and treatment that you feel is helpful. Really listening to many on this forum, ideas I first thought didn't make sense led me to find better care and insurance covered treatment for my child.

Ok msss mathmatician, then crunch all the numbers you want, you know they don't mean much. So why are you using this data to contradict anything and everything said on this forum. My neuro, not the greatest guy, also has his masters in statitics and he like yourself has concluded that if you look at all of the studies on Pandas, which are not statistically not sound, no blind, not replicated, number of participants, there is only a 4 percent chance pandas even exists. So all that Math and medical experience, and guess what HE'S WRONG!!!! I am tired of having to justify everything to you, you counter with strange assumptions and throw numbers at things to justify your points that are misleading. We have long been down this path of analyzing every statement in swedos studies. Many on this forum including myself have talked with swedo. If you want even better info watch her autism conference on internet where she talks in detail about about the study and individual children. No one is saying that ivig or pex do not help, just that pex was seen to help tics more. Anyway, I am glad you are on this journey, to really look at the numbers, I myself have a statitics background, and did that 6 years ago. There is a wealth of info on this forum, don't ignore it or counter always like "you" have all the answers, becuz the truth is all we have is our experience and these studies are still experimental, and these treatments are too. I hope you find help for your child and treatment that you feel is helpful.

I believe the concern is that in the ivig group the kids tics were subclinical to start with. NorCalmom, you may think ur the expert. Keep reading maybe you will learn more!!!!

Check with Buster, tics did not have same improvment with ivig and pex. He talks about this in a past thread, years ago. Apparently, kids with greater tic severity were in the group of PEX. And kids with much less tic severity were in the ivig group. Therefore, data on tic improvement is skewed due to the control groups from Swedo's studies. Ivig does not have as much success with tics as PEX. PEX sees an immediate improvement and ivig does not. I am not sure how you can say tics were equal resolved when those in the ivig group didn't have severe tics. But do n't check with me check with buster or eamom.

You paid in full and they got 4500 from ur insurance company. They cannot keep more than what they billed. They need to reimburse YOU the difference. How much in total did they get for your childs ivig? This should be a big issue, if you feel that oakbrook is greedy, they are making ridiculously high amounts of money on each infusion if they are receiving non insured rates. Why does doc K not help since he is a big client of theirs?

Ivig did not have as beneficial results for tics as plasmaphersis in the swedo study. So measuring tic resolution may not be the best way to look at ivig success. Concentration, chorea, sleep, and severe ocd seems to be helped with ivig, tics can take up to a year to resolve. So be careful when looking for successes, its important you understand what was helped in Swedos study. Tics somewhat, about a 15 percent reduction on average, some more some less. My doc says it can take up 6 months of high dose ivig monthly to see help in tics. I hope you continue to see improvement, the tics are the last to go. I am an advocate of morew ivig than less. It has been helpful for us.

Those same "experienced" moms said ivig was helpful a year ago. Talk to the experts ask what they see, EXPERTS, people whom have been treating pandas for many years and have seen hundreds of patients. Dr K does not agree on the Lymes stuff. He does however feel getting rid of infections, strep myco is important. He also says only ONE child he knows of has been "cured" by getting rid of infections. The rest need ed ivig. Monthly ivig right now is a great option to keep disease activity down, someday b cell drugs will show more promise.

Try half days first, if child has lots of fatigue.

There are three or four moms whom felt monthly ivig made their kids symptoms persist. However there are many more on this forum whom see help from regular ivigs. Swedo did a study in SC, I believe the treatment was three ivigs. These children wnet into remission sooner than those whom did not get ivig. My neuro says ivig helps get rid of the symptoms, helps, but cures are mostly seen in younger kids. For autoimmune disease monthly ivig usually takes approx. Six months to see improvement. And who knows how long to see a cure. My advice is test properly BEFORe ivig, if no lymes give your child a chance to heal. But all of you lymes moms, ivig is not contra indicated for lymes. We all need to be careful not to knee jerk our kids treatment around due to several cases on this forum. I continue to hear things like "monthly makes kids worse". Its not true, actually, one high dose of ivig makes kids "worse" RIGHT Turning Back of Pages, or what did Dr K call it suicide time. Why is it that when its worse after one ivig" that's not considered worse. I can tell you my dd's first ivig she WAS worse, horrible. Far more than her second ......up to her 14th. Dr B gives monthly or bi monthly and he sees improvement, my doc has treated 8 kids and has seen improvement, Murphy has a doc in immunology whom has immune def kids on monthly (8 or 9) and he says it helps! Dr K does multiple ivig's for the older kids, even some younger. By far, my dd's first ivig was the worst! If your child is reinfected symptoms persist or exascerbate even on ivig. Sooooo just one other opinion, but I got lots of cases to back it up. This is all still very experimental, do your research, talk with docs whom have done one or two and monthly to see what they say. Also make sure you have insurance coverage before asking your docs opinion, cuz, I doubt he would recommend monthly or bi monthly if you have to pay out of pocket. Unfortunately, this does change what they recommend.

I would like to piggy back on this thread with another doc, in cincinnati, recently mentioning ivig to a child with high titers and chorea mild and tics. Dr Wu a neurologist at Cincinnati Childrens offered a friend of mines son ivig if they want, However said "I would not do it if it was my kid" soooooO scared the mom, but offered. I wonder if he would have followed through with his offer. So just putting this out there for all the Ohio folks. But again, high strep titers was why child was diagnosed with Pandas. So for all those with no titers, look into immune deficiencies, like Dr T speculated on line here with his two types of pandas. Recently learned that kids with immune def's don't have normal titer responses to all kinds of infections, soooooo this is why blood cultures need to be done on them rather than titer tests. (This is not for panda kids rather for immune deficient kids when docs are trying to find infection if they have a fever)

Not allergist immunologist, IMMUNOLOGIST only, why are you paying out of pocket if you have an immune def? That is not ok, not ok!!! Do you have insurance? You can enroll your child into a self insurance plan with a preexisting condition and it cannot refuse to pay. (Health care Reform Act). Most health insurance cover ivig for immune def's. It is a lot of money to pay for ongoing ivig. I would keep investigating this option.

Melanie, You do not really have an option. Most docs try not to switch if they don't have to just becuz there is always Some risk, I think danny has had gammagard before at the hospital right, so what is the concern? However it is not crap, it is unfortunately a reality of ivig, some people whom have switched brands have had allergic reactions, but most don't. I was just telling you this becuz my homecare and doc requires this done in the hospital just in case you needed to make plans with insurance. I have been down this road, we tried to switch to gamunex and it never happened due to the homecare and insurance requirements.

You'll have to ask Dr J that question. But it looks like you don't have a choice really, becuz of the recall and insurance.