nevergiveup

This bug is also notoriously a cause of sinus infections. I would say this is definately my kids culprit because she has no antibody titers to the polysacharoid bugs and she has had over 41 sinus infections and four pneumonias in the last five years. SF Mom what abx are best for this, I know aug XR is by far the best drug for chronic sinus infections and it can take up to sixty days to erradicate the bug from the nose at high dose. Cefdinir seems also a good choice. B lactam abx I believe fight this the best, not necessarily the macl or azith? That would be better to mycoplasma. quote name='SF Mom' date='Sep 26 2009, 10:11 AM' post='39304'] From my understanding its fairly difficult to be tested for S. pneumoniae and the hospital would 'most likely' need to be associated with a university to have proper testing equipment. Again, I've got an e-mail into Dr. Cunningham to figure out how we might be able to be tested. Perhaps you are thinking of the STREP PNEUMOCOCCAL ANTIBODY TITER test. This is not looking for the actual bacteria but more of the response the body produces to the pneumococcal hence 'antibody titers'.

I can say more trust me. Looks likes the battles on, Pandas Foundations Launches Got Strep and Kurlan comes on to counter so Ped's don't treat with abx. Interesting, I know he got 5 million dollars in research funding for the mirapex drug to use on tics. (I'll get back with you on what he got paid personally to do the study) What does he get paid for this webinar? Why is he so vigilent against any treatment of PANDAS? Who's funding him? I think the TS society, which all these guys Singer etc... Consult and I believe are on the board and have not offered up any funding towards PANDAS studies. WHY. , let's find the money trail and I think we may understand things a little more clearly. Where is the TS foundation? Magnets on a helmet they recently funded but not another PANDAS study after swedos small study but rather very successful outcome. Please why aren't parents pushing the TS national society for more funding in this research? Oh pandas is rare, bull####, twenty percent of children have tics at some point, usually in winter months, a very large study was done on this. Cannot this be a slight immune reaction and then the kids adjust. Transient tics, hmmmmm random tics for 9 to 12 weeks after infections usually go away? Something is so very wrong! Oh yeah and let's get the shrinks out of the way, hogging up funding for useless studies, send all the neuropsychiatric disease back to neuro, immune and infectious disease and get out of the way. See I have a lot more. But its useless, I just wish I had a million dollars to donate to the right doctors, and end this controversy.

Here's the deal, waxing or waning, severe exaserbations, SC, ocd etc.... All fall in line with TS. TS is a syndrome, not a disease. It is a grouping of symptoms and can range, from mild to severe, with remissions and sudden exaserbations. They have grouped this into one category so neuro's can treat the tic disorders with brain drugs and shrinks with shrink drugs all patches at this point.. No clear blood markers identify this syndrome. It sort of drives me crazy when I hear us separating TS from PANDAS as if TS is a disease. It is tics, tics that go into remission, tics severe or not, it has comorbids, rage or ocd, or adhd or depression and cognitive liability at times. TS is not an illness, its a grouping, no one knows the cause, no genetics have been clearly established. Eighty percent go into remission in second decade, please, Dr T reminds us that all kids seem to do fine over time with pandas, sound like ts. Its not about separating our kids out from the TS kids, our kids are the TS kids. PANDAS is a subset of TS, where an autoimmune disease is the cause, brain antibodies. Kurlan knows this. He just wants better markers so he justify treatment. Liabillity, "do no harm" these docs are the gate keepers and they also see themselves as protectors of our kids from over vigilent parents whom may risk everything to help our children. I had one arrogant neuro whom works very closely with Singer, and Kurlan, tell me that they know the syndrome is potentially three different illness. One trauma maybe at birth, two developmental, brain as child grows develops poorly, and three autoimmune disease. Clearly our kids have the autoimmune disease. They know there is an autoimmune component, they are very familiar with what mycoplasma pneun can do, severe tics. But without solid autoimmune markers , and strep titers is not it, they have no justification to treat. I do find it hard to believe that he can say the mouse model is not validated. He was one of the original docs stating that if this is autoimmune it would be reproduced in an animal. Basically, its just public policy. I think we need to push for good double blind studies, its the only solution. Abx high dose has just started with Murphy. They do the strangest studies on the ts kids, like a cap with magnets, now the mirapex drug which everyone knows over time you build up a resistence to so it may be a temporary solution at best. They failed finding the gene. Its getting pathetic. My fear is that this guy will eliminate all chance for funding. Pandas will go down the path of autism where no one is listening and all funding for studies is just targetted towards proving the parents wrong. How sad is it that a lot of the funding for autism in the past was just to prove vaccines were safe rather than trying to understand why children got sicker after vaccines. (You get different results when you are trying to dispprove something rather then trying to prove a relationship) Kind of like that stupid study in europe where they looked at kids who got strep to see if the more strep throat you got the more likely you would has ts. Please my dd's first strep throat was her first pandas attack. She didn't need to get strep throat 10 time to have an autoimmune reaction. But yet its title was good enough for pedicatricians, strep does not cause TS. Just like the studies that say vaccines are safe. We all know vaccines can cause neurological side effects. We get a paper at the pediatrician to sign telling us vaccines can cause neurogiical disease.

I want to post my dd's own comments since she is old enough to understand her illness and because ivig changed her life. Although she currently has tics still, they are rather mild unless she has stress on her immune system(exposed to viruses or infection) My dd had her first pandas attack at 7 years old, she later had another at 9 and then recently had an overwhelming attack at 12. I thought she had remission in between because her coordination and movement disorders disappeared but she tells a different story now that she can talk about it. She says that I will never understand her suffering the last five years, how the intrusive thoughts consumed her brain constantly for years. She has told me some, how every night she thought she may harm herself that's why she wanted me in her room, I thought it was pandas "separation anxiety" but it was a fear she could't even speak of. Years of this, the thoughts would come and go, harming herself, inappropraite touching thoughts, harming others. She was so little and just hid everything. She still won't tell me everything, says its way too hard but someday she wants to write a book about it to share with other kids living in constant fear of their thoughts. To everyone on the outside she looked like a normal kid maybe a little anxious but that's all. Well here is the point to my long post. She tells all her docs since she received ivig in May , ocd went away about end of June. She doesn't have it anymore, she says for the first time in years she is at peace. For me the only thing I see different is since ivig she has stopped distracting herself constantly. I thought she may of had adhd but she had good grades, but she needed constant distractions for years, to the point of exhausting herself. Let's go here, let's do this, let's play a game, let's sing, let's dance. That's completely gone, we watch tv together, we relax together, we actually now have silent momements. I think the distractions must have been to distract herself because she was having another thought of harming herself. But notable and remarkable, after years of ocd we are now going 9 months no ocd. Now she is on monthly infusions, and she swears that the ivigs have eliminated her intrusive thoughts. So for all the parents with kids under eleven, I wanted you to hear her story. My dd is extremely articulate and a pleasure to be around always was even during the bad times. She hid this, which was probably best because since she couldn't control her thoughts talking about them would not have helped.

This is a neurologist that is studying tourettes and he recommended ivig for basal ganglia inflammation. Gosh the tides are changing. Cincinnati childrens hospital rheumotology and neurology for kids with basal ganglia inflammation(seen on mri, which means there is a ###### of a lot of inflammation) are diagnosed with either autoimmune enceph or sydehams chorea, usually insurance covers because with those type of diagnosis they don't want the liability of denying treatment. Did Dr L know he had a study going on? I wish you and your son the best, and think you are now in good hands or at least will get some documented evidence of what is going on which will lead to treatment.

Worried Dad did a pet scan also and had inflammation. I know they do mri's if needed on kids with braces, I guess they remove them. But go for the PET scan not the mri anyway, MRI's rarely show basal ganglia inflamm well, but pet scans do. If the neuro is recommending this why won't the insurance cover it. If it is not coded as PANDAS rather infammation or autoimmune inflammation then insurance should cover ivig? He can choose autoimmune encephalitis, insurance cover ivig for this, and that's what he has if he has docummented basal ganglia inflammation. Wow, is this a childrens hosp with a pet scan. How long do you have to wait to get it?

I like this poll and the question options. I think you will find that the results will be like swedos study, where most children improved. I believe in her study eighty percent after a year stated their kids were better or much better. (She didn't use cured, maybe an unrealistic expectation I do not know)

We had our ivig done on a friday and no docs were in for ivig on saturday. Honestly I feel there was a screw up. Somehow I think she was suppose to get 1.5 in one day and georgetown messed up the order. Dr L said we would load her up that kids handle that better than adults since we only had one day. So by Tuesday (during followup)when we saw Latimer we asked about the dosage and she said something about body fat versus muscle and felt the dose was sufficient. So I am now on a mission to determine the right dose. And after seeing an expert in autoantibodies and immune deficiencies, whom has done previous studies on sydehams chorea, he said in autoimmune diseases you have to alter the production of the antibodies by shutting down the bone marrow and this is done through very high dose ivig. In severe autoimmune disease you just dose them up every three weeks with 2 grams so they never make the bad antibodies again. Thats for kids whom are sick and potentially risk death from their autoimmune condition. (Not pandas) He also said he never had any luck getting the sydehams chorea antibodies out of the brains, said they stick like glue. But that study was done some 30 years ago, he was very impressed with cunninghams autoantibodies she has isolated and is measuring. I will post more info soon, we did lots of test and have a followup soon. Laurenjohnsonsmom, why does Dr. T not do ivig? Does he support the higher dosages? Has your dd had ivig yet? Is your husband Doug on the site? How is she doing? L

Melanie, Dr Swedo's study was a one time dose, (over two days, not monthly) maybe a second if the child relapsed again. Danny is getting one gram every 3 weeks, the donor antibodies have hardly died off before his next infusion. He may need this depending on his type of immune deficiency. I know the DAN protocols follow this type of monthly infusions and dosage. Maybe your immune docs knows more about Danny's specific needs. I look forward to hearing what your immune doc says.

Laurenjohnsonsmom, Swedo did the 2 gr over two days. When did she study the 1. 5 grams. And latimer only gave my kid one gram in one day.

Your immunologist should be very familiar with ivig used for guillian barre, ADEM, and other autoimmune skin diseases. I do not think he will argue this point, that high dose ivig is used in autoimmune diseases. He sure won't tell you that low dose is used successfully in autoimmune diseases. Just ask. Also did Allie produce any serotype above two when you retested her pneumoccocal iggs? If she has no response now after 2 vaccines I would say that should be sufficient. How long after pneumovax are the titers supposed to be at protective levels? The reason I ask is that Allie 1st had the pneumovax @ 2 1/2 years ago- the first time she had a poor response (less than 2-fold as compared to baseline). She was immediately revaxed and the second time showed an adequate response. When her titers were pulled again last Nov. , they were low again (but this time I would not revax)- but is that normal or should they still have been protective after that much time had passed? At any rate, her IgG that was already well below normal range 2 1/2 years ago- was even lower when checked last November. Like Melanie, I am interested in studies (double blind would be nice) that show higher dose IVIG is more efficacious in autoimmune disease, just to bring with me when we eventually have "the discussion" about dosage. I know swedo used 2g/kg, but she didn't compare that to results of a lesser dosage, and I don't remember her giving a rationale for that dose (maybe I need to revisit the paper). And Dr. K hasn't published on this issue, has he?

Peglem, Melanie, SAD is selective antibody deficiency. Its when you vaccinate your child with the prenvar or pnuemoccal and they do not produce a response to the vaccine. Like Ally, it means not only does she have low iggs but the quality of these iggs are garbage, even more limiting her ability to fight infection. Melanie, you asked who sets the dosage? I was just trying to help so you understood what high dose ivig is used for (autoimmune) and lower dose (immune def). Of course the dans have different protocols more like Danny's protocol. Danny already had high dose ivig and most likely is still benefitting from his first high dose infusion. Monthly after the high does is working well for Shaesmom' child. Peglem, I don't understand why your doc after sending you out to see Dr L does not follow her dosage. I think its totally justified and insurance covers 1 gram per month for SAD which Allie has if she failed all her serotypes again after many vaccinations. I wish we all could have a vacation. I am looking forward to one where I don't have any worries. I think you both have fought so hard and so long and maybe you should just try your docs protocols and see what happens. Hey, my immune guy said my dd's sky high ANA will not come down with ivig and it did after 5 years of not budging and two weeks after ivig it changed from speckled to centr. (2560 to 80) Unheard of said her docs. It has remained low now for 9 months and her ocd has improved 90 percent. She says she is a new child, all on low dose ivig. Her tics continue.

They see it, the medical community knows but let's face it doctors are tradesmen, and they follow a protocol they have learned and trust and go down their checklists. ( Most are not researchers) Pandas has no check list, no precidence, liability is high and first and foremost on kids is "do no harm". A relative of mine whom teaches at a medical school asks all his new med school students "What was the single best invention that prevented disease and death? The students of course guess all type of medical inventions and drugs. And the answer is "indoor plumbing". I think the fight is with Swedo, Leckman, Dr K and Cunningham. They offer us hope, the rest of the docs are trailing behind conforming and just making a living. I am disappointed in their limitations too. I wish they understood that "do no harm" is leading to harm done. ( So so true.. and why is this dismissed by so many doctors, when studies are showing so many correlations in cases and in effective treatment? I think the link for Autism, ADD, ADHD, Tourette's and the like may lie inside of the research for PANDAS. And I'm not a doctor, just a worried Mom. If all of us see it, why can't they?

Melanie, Swedo's original study was 2 grams, Dr K's 80 percent success rate is 1.5 grams. All autoimmune diseases treated by ivig are high dose. I am not sure what studies you refer to. All studies and data collected were from high dose. What study supports low dose for Pandas? What data do you think is out there, not many studies have been done on Pandas. Melanie who is your immunologist that is treating pandas? Ask him about his success rate, your son gets frequent ivig at a pretty high level so maybe this is sufficient. However the studies that were done were not monthly nor were they at this level. someone needs to show me proof that you need more than 1 mg per kg .I cant find anyone anywhere (MD) that is saying this.Who is using this and has had better results who??If anyone can foward this literature I would be greatful.Sticking my son every 21 days for no reason if its not the right dosage will make me very angry. Melanie

I know, I had the same thing with three different rheum docs. I had to find immun/rheum specialist combo. I am confused as to why your doc won't treat the immune def without Dr L's consult and then does treat but ignores Dr "L's dosage. Insurance UHC will approve up to a gram for SAD. I know you don't want to alienate your doc. Its a fine line. But maybe a second opionion from another immune doc, a researcher whom can eliminate the liability issue and offer expert advise.

Wendy, Have you rerun the cunningham tests to see if autoantibodies have reduced? I am very interested in seeing if these markers go down. Not the Cam Kinase just the autoantibodies? We do every four weeks, just switched to one gram but will probably change this to the 1.5 grams every 60 days also. Still getting tests in line and getting consults. And insurance approval. Every 8 weeks, 1.5 m.g. per kilo gram (hopefully only three treatments are required for us). -Wendy

Peglem, There is no data that shows low monthly doses are helpful to pandas. However swedos study and Dr K's experience both support high dose. So do other successes with autoantibodies and ivig. Allie has an immune def and this dose will help, but your immune doc is behind on the science of immune deficiency. If your dd has low IGG's and failed pneumoccal then not only does she have low immunoglobins she also makes bad igg's that don't work right. Her B cells are probably not being made right to ever fight polysaccharoid antibodies. With both low igg and SAD, recommended doses are usually NOW around 1 gram per kg every 3 to four weeks. I think you need to go to your university or medical center with the BEST immune doc. She needs her IGG levels monitored with ivig and determined how she "metabolizes" the IVIG. I was told by one of the leading researcher in immune def , that my dd's levels should never drop below 800. But for autoantibodies, and if I remember correctly Allie scored high on those from the cunningham test, these are eliminated by high dose Ivig which then alters the bone marrow production of antibodies. Basically you are overloading the system so much that the bone marrow stops making antibodies because it doesn't need anymore. Hence no more antilyanglosides or dopamine one. Two different diseases, although related. Because kids with immune def's tend to make autoantibodies. I believe its all B cell related. If you cannot fight infection right then sometimes the immune system overproduces other bad antibodies to try and compensate for the deficit. Once this is triggered and goes on for a long period its hard to stop. The immune system keeps making them. High dose ivig may stop this production, temporarily. Autoimmune diseases are hard to cure. Do you know many people who are cured from RA, LUPUS, MS. They go into remission yes, but cured is another story. So who to believe, I think the science for autoimmune disease and ivig is more clear now, with high dose ivig. One question that seems to be still questioned is whether or not pandas is truly an autoimmune disease. Hopkins still feels that pandas is not. What does your immun doc think? The other issue is that autoantibodies tend to be managed by rheumotology not immunology. The experts I have seen have a specialty in both and feel they are connected. Melanie and Peglem, I have fought hard to get my dd the ivig like both of you. And now I find out high dose is probably the best possibility of altering her immune production of antibodies. (For the last 5 years). Honestly, after seeing countless docs like you all, Swedo, SFMOM, Buster, CoCo and Dr K their protocol seems to make the most scientific sense. And the physicians in my family agree. I can tell you the low dose ivig's have helped eliminate the ocd a lot. But not the movement disorder.

Ok this is the kind of conversation that helps justify all those actions from the doctors who won't treat. The biggest concern is that if docs don't see results they will end trmt for all. Who is this immunologist that worked with swedo, her studies did 2 grams not one monthly. Anyway, I guess the typical question that needs to be asked is how much succeSs are they seeing with monthly dosages. I have spoken to at least four docs whom are doing monthly dosages for kids with panda symptoms and they say that it has helped symptoms. But still see set backs at times. Melanie, you threw out the idea what dosage works? The only markers avail are the cunningham tests and also aso, strep titers. Have you run the cunningham test? Why does your doc say one gram per kilogram. What is his rational? Or is this just the amount insurance will approve? Historically autoimmune diseases had a very poor success rate with ivig, almost to the point that it gave ivig a bad rap in the medical field, because it was spouted off as the cure all and later these diseases would come back stronger than ever. But recently immunologists and rheumotologists have gotten together and found great success for some autoimmune disease at high doses. The standard for these are 2 grams. This is the autoimmune disease standard. They are even now using it for ms which was never successful with ivig in the past 20 years. I am glad your son is getting help. But run the cunningham tests and run them again in 6 months, this may help you and your doc see if his markers are improving. Your son is getting a high dose and more frequently than most. Maybe its enough to alter his bone marrow production. But better success is seen at higher doses.

Scary huh? I absolutely agree. Who makes the rules? Melanie How are your docs measuring success? How will you know and when will you know if you are eliminating the problem antibodies? There are two ways I look at this, are you treating Danny's immune deficiency or his autoantibodies? Peglem, the same goes for you. My dd gets monthly infusions for her immune def at your dd's dosage. I have called multiple DANs across the country to see what success they have seen from regular ivig's and all state that the tics still remain. So according to Cunningham the theory is that autoantibodies in the childrens brains are causing the tics. Autoantibodies and immune deficiencies seem to be closely connected. I recently saw an expert on immune deficiencies and autoantibodies. This doc even has several studies going on analyzing these kids. (Not pandas kids, kids with immune def and lupus, or demylinating.) The fact is, that autoimmune disease is very hard to treat, and success is only seen with high dose ivig? (He said 2 grams) (This makes the bone marrow stops producing antibodies). Lower doses of ivig do not. My dd is healthier then ever on monthly ivig because she was always sick, always, but her tics remain. And actually so do her autoantibodies. We ran the cunningham tests and her antidopamine is highly elevated. This is my marker! I am asking for high dose ivig and then will retest cunningham to ensure these autoantibodies have been eliminated. After that point I think the docs would prefer subcutaneous immunoglobins which will keep my dd's globins at a more consistent range for her immune def and eliminate monthly infusions. The docs I have been talking with say autoimmune diseases are hard to eradicate. Bock has some kids on monthly and sees these kids better after four months but I believe he does the higher dose to start with. The idea is proof of autoantibodies and something to measure to ensure success. The immune doc felt the Cunninghams study could be the starting point. So I am pushing for a chance to do this by doing the 2 gram per kilo and then monitoring the cunningham autoantibodies to ensure they go down, and then over time more testing to ensure they don't start going back up again. If you have a marker to measure for sucess you may be more confident that your infusions are working. I would do the cunningham test again since he has had two doses to see if your dosage is high enough. diseases).

My dd always had a remission of symptoms during fever. She also has a very high ana it would range over the last three years between 1280 and 2560. I believe these antibodies correlated with my dd's ocd symptoms. Because when she started getting ivig's her ana dropped to 80 changed from speckled to centromere. This was notable because she had a high ana for almost 4 years and ocd and after ivig her ocd improved greatly and her ana dropped dramatically. Interesting enough the immune doc says ana's normally don't drop with ivig. My kids did and have stayed low so ivig is doing something good.

1.5 or 2.O, the point is high dose not low dose monthly ivig, Diana whatever noise this has generated I would gather its good noise, the idea is the Dr 'ks philosophy about shutting down the immune system comes from ivig specialists whom know that autoimmune disease needs high dose ivig? The bone marrow has to be altered in its production of auto antibodies, and as much as I admire all the pandas docs and the barriers they have crossed, the autoimmune guys treat aggressive autoantibody disease everyday and after years of studies now realize high dose alters the immune production. Reality is, this is an autoimmune disease and they do go into remission and do relapse its the nature of the autoimmne diseases. In addition some kids may have the immune system altered and go into remission, while others may need additional trtmts and regular immune modulation. You have to be kdding to assume all go into remission after one year. Let's use MS as an example, shall we, some regress, some relapse, some are in remission. Dr L has patients whom return every three years for another ivig? So if we believe one solutuion works for all we are doing all the parents out there a disfavor, Swedo did 2 grams, high dose, which does put our kids at risk for more serious side effects from ivig, Dr K does 1.5 and has a 80 percent effective rate. At what dose are we guaranteed bone marrow shut down? The higher the dose the more likely. Buster did 2 grams, my kid did One gram with Dr L and now Dr K is saying that level could make things worse. (She's not where I want her ) Please.... Are we experimenting on these kids????? I feel that the ivig specialists who treat autoimmune diseases know how to eliminate antibodies, and that's what we are dealing with autoantibodies. Swedo studies supports this dosage, so does many other childhood autoimmune disorders treated with ivig. Dr K dose may work for many, but the cost and side effects need to be considered if you need additional therapy or if this dose is not strong enough to shut down the immune system. Not to mention the ivig imune specialists whom treat autoimmune disease everyday, oh yeah and how about Swedo? I am not sure Cunningham is the specialist in ivig. She is an amazing scientist but not an ivig expert nor does she treat aggressive autoimmune pediatric disorders everyday. This is a learning process for all and actually I am not believing that we all believe a permanent cure is inevitable. I will keep fighting for that and if my child need more immune modulation I will make sure she gets it. I am stating the facts from some very credible immune docs whom work with autoantibodies everyday. Are these not the type of docs we want working on pandas? They have never believed in the past and are slowly changing their minds because Cunningham has identified the autoantibodies. But to pretend we know better does not make sense.

Autoimmune Diseases are difficult. They relapse and remit at random times. I have been fighting to understand this illness for 7 years and SF MOM, Coco, Buster, Eamom all have got this thing well understood. High dose ivig fights autoimmune antibodies, it shuts down the bone marrow and allows the body to not produce the dangerous antibodies. This is a battle and the body may start reproducing autoantibodies again if triggered even years after symptoms have gone away. The idea here is with an increase in autoantibodies then additional high dose ivig may be necessary. I recently spoke with one of the leading ivig specialists in the world, he has a specialty in immune deficiency and autoantibodies. Treats kids with super high dose ivig for all types of autoantibodies. A lot of these kids get regular high dose ivig. He had done a study once on SC and said these antibodies are extremely hard to get rid of. Once they get in the brain they bond, stick like glue and it is very difficult to get them out. Not what I wanted to hear. Anyway, although the whole pandas idea still is not this doctors thing, Cunninhams test are very credible in his mind. If you can show your child has these autoantibodies it add credibility to justify treatment. And in his mind the only ONLY effective safe treatment is high dose ivig at 2 grams per kilogram. Maybe one time, maybe more but you need to see the cunningham antibodies reduce dramatically. Other treatments would probably help, like b cell treatments used for lupus, but these are risky treatments and require ivig also to help replace what the drugs remove. So the tides are changing, but blood markers are critical.

Yes the first monthly ivig, my dd did have some symptoms right after ivig then she goes into remission about 2 weeks and then she seems to have a lot of tics again. Each month its gotten better unless she gets a cold then she has a very strong but short ticcing reaction while she is sick. (Interesting before monthly ivig she had remission of symptoms while she was infectious now its the opposite she has extreme symptoms but very short lived while sick. I can tell you with ivig the flow of symptoms changes from what you were accustomed to. Its becomes rather unpredictable, or different than pre ivig. Maybe because we as parents after so many years knew our children's PANDAS's cycles and after ivig these cycles are completely different and their triggers are different. With more time you may understand more. Hard to explain but my dd is dramatically different and swears her ocd is gone with ivig. Tics are still an issue at odd times mostly third week after ivig and if she is exposed to viruses.

Coco , First the posting I gave was added to part of vicki's response by accident. Second, my comment in reference to your dosage post was to demonstrate to eamom how many people are influenced (the silent watchers) by our post and our comments. It was not an opinion on whether or not you should have posted this info. Personally, I feel that your post was extremely helpful and may help many children in future. This type of info is critical to get out. I in NO way felt that this post should have not been written. The amount of noise heard was notable. ( This is why we need to be careful before we criticize anyone's professional reputation.) People are reading and watching. The parents are making a difference, its amazing. And medical treatments, successes and protocols need and should be shared. Your post may change the lives of many children, including my child. What ever made you think I was critizing it. It was however a post that made me realize how influencial what is said here can be. I talked with several docs that day and the secretaries commented on the rush of calls asking about the dosage of ivig. So you made a very big difference and as I said may have changed the prognosis for many kids. Noise is not necessarily bad noise. This noise was the right noise. Anyone on this forum should be allowed to post whatever they want. And anyone else on this forum can contest or challenge as needed. Its what makes this forum work. Nevergiveup, I am hoping that my post regarding ivig dosages just provided more "food for thought" on the subject and not a run on the bank from neurotic parents banging on the doors of unsuspecting doctors demanding that protocol. To be honest, and it is not my intent at all to come across as anything but totally committed to getting my suffering daughter well as quickly as possible, offer others encouragement, and share what I have learned with as many others who are seeking, just like me. I am less concerned with physician's offices handling a busy call load. Perhaps it can be turned into a "positive" because it is forcing less experienced pandas doctors to consult with the more experienced, and in the end maybe, just maybe, there will be enough experienced ones out there to handle the tidal wave that is about to hit. I have no idea how many calls my post generated, but I hope it was enough to move our cause along, because without parents pushing, this ain't going nowhere. I had a friend the other day say to me, "Wow, I think might to be too selfish to pass all the information you've gathered on to others because it might make your place in line get pushed back that much farther, after all you've been through." She may be right, but, I have to believe that one good turn derserves another and that giving back is part of this journey, however you choose to do so.

Vicki, I am not sure what you are trying to say here. Worn out mom just explained her whole appt and the follow up testing. Sounds like Dr L did a thorough job. Their search is not over yet and I hope that from some of these new tests they can find answers and full recovery for their child. As for not posting your doctors, its a personal opinion. But my point was if you are publically willing to criticize other doctors and use their name on the internet without knowing them, using the term hasty when that is the last thing Dr L is, is hasty. But you don't post your own docs name because you feel this is inappropriate, morally its should then be inappropriate to talk of others docs. Clearly, Buster and Eamom were the first to have a child treated for Pandas (by this team) and their childs success will hopefully make believers of these docs. Small baby steps. Bombarding these docs whom are not experts (but open to research protocols) with every person from the country flying in looking for a PANDAS doc (self diagnosing their child) of course would be a disaster. If this is their first case they still have not acquired the diagnostic ability to handle mutiple case loads from everywhere. Not to mention the insurance mess. Listen, what Dr K, Dr L and Dr T are doing is they are the founders of the study of pandas. A huge responsibility and liability but not many (very few) doctors these days are founders anymore. Dr L didn't have so many pandas patients until mdmom started posting after that she has received a huge surge in pandas cases seeing all types of people from around the world. She is not turning people away. Its not about feelings, its about the hundreds of others who read this site and now walk away thinking Dr L makes hasty decisions. And this may affect her patient relationship. Do you know how many calls were generated by cocos post last week about ivig dosage and kids with cvid? The acn post were small, but the amt of noise it created at the docs office was huge. I do not know how they can run an office when everytime we post the docs get multiple calls from frantic parents. But they do and they are kind and help our children. I'm going back and forth here if I should post anything. So I will post a reminder that every child is different. Every appointment is probably handled different. I have not seen any of the experts so I do not have ties to any of them or any personal feelings towards any of them. With wornoutmom/dads child, it could very well be that if they went back to Dr L's office a month from now, the "story" would be different. It is sometimes a matter of how a child is presented and how a doctor views the information. Two of the experts that are listed on here have given conflicting info to different parents.Opinions on this disorder, how it should be dx, how it should be treated, and various details on what a PANDAS parent should do for their child doesn't really seem to have consistency right now (even among some of the experts). I am so happy Dr L was amazing to a good number of families, but as it was stated, she is human. And there's always a chance this child's case may not have been handled as beautifully as others. The best thing for this family to do is to pick themself up and go on. get the second opinion they plan to do and maybe once things settle, try to have both dcotors conference about their child. As for EAMom and Buster...I understand why they choose not to publicly post their doctos's info. Let's face it, parents on here put them on a pedastal. If they posted their docs' info, people would be booking flights instantly to see their doctor and requesting the "Buster/EAMom child protocal". Perhaps the doctor specificly asked them not to post his/her name. So I wouldn't hold that against them. Now, personally, I don't know I how I feel about giving the name to locals but not everyone. Maybe that should be rethought. All or none. But I understand not posting publicly.