nevergiveup

My dd mirrors busters child, at 7 severe change stopped eating, hiding under bed, pediatrician thought she had a psychosis, hospitalized ended with rash and high fever while still in hospital.(Never had any movement disorder) Got better slowly over time. Two years later overnight tics, ocd, catatonic state, dilated pupils close to 4 months then some remission on abx. At 12 severe movement disorder overnight, Actually my dd walked in the room and said Mommy its back. Hands rolling, eyes rolling, hyperactive. Now though she displays more consistent less severe symptoms all the time as long as she is not sick. With illness she has more severe tics again. No ocd anymore cuz of ivig.

I keep hearing about slightly high lymphocytes from others on forum. Also zith may lower neutrophils but it is not a common side effect, and recent ivig can lower neutrophils. And low neutrophils could mean autoimmune disease. Anyway docs didn't think much about my dd's lymphocytes but I am wondering about.

Absolutely the good guy, I agree.

I completely agree! These are the best docs Does anybody know more about this replication study? My reaction is pooh, who needs it? It's just going to be an excuse to narrow the focus of the kids when most of us know there is no such thing as "carefully defined... narrower criteria" It's gonna try to make us all into crazy parents. Just sayin'. I understand- you have to choose subjects that you are certain about- to reduce variables. Its the reason my child will never qualify for studies, she just has too many variables. But, in practical application of what is learned from studies, doctors need to be able to interpret not just the objective testing and data, but consider how it applies in individual cases. Otherwise, the only people who will benefit from what is learned from the studies, is those who would qualify for the study in the 1st place, and that is denying care and treatment to a large population of people who need that help. My daughter's pediatrician believes she has a type of post-infectious encephalitis. The difference that he sees is that her immune system, is not dealing appropriately with infectious agents, so that she has maintained a chronic, low level (compared to say meningitis) encephalitic state most of her life. He says we cannot possibly keep her strep free, MP free, pathogen free, because these germs are everywhere in the environment, on our skin, respiratory system, etc. So he sees correcting the immune function as the key to helping my daughter with this issue. Somehow, when you don't diddle with the question of is it PANDAS or not...but just try to define what is happening in the individual case and what treatment is likely to help- it just makes more sense to me that way.

Peglem, Its called "stacking the deck". Hey Singer stacked his deck to make it look like pandas dont exist. (Hopkins). Swedo has to make sure she's got the kids with autoantibodies to prove this disease is helped from immunomodulators. If she has the wrong kids in her study, no one will ever prove ivig helps. Just my opinion. All docs "stack the deck" in their selection criteria, they want non biased results. Does anybody know more about this replication study? My reaction is pooh, who needs it? It's just going to be an excuse to narrow the focus of the kids when most of us know there is no such thing as "carefully defined... narrower criteria" It's gonna try to make us all into crazy parents. Just sayin'.

The title attracts all the naysayers to read the article. Especially the docs whom don't believe. But the content is great. And it is exactly what is necessary to get the docs looking closer at each child with tics. Now they will start asking parents questions about handwriting, sleep habits and other symptoms when they present with tics. Maybe this is Leckmans reverse psychology, he does know a little bit about the human mind and how it works. Docs have to start looking deeper when a child presents with ocd and tics. 60615'] I had the same take on it. I know he believes in PANDAS. Don't know his preference for definition, other than I suspect he's in the camp that would like to see "strep" dropped or changed to infectious agent. But that's speculation on my part. I know he's been working with Dr Swedo and Dr Cunningham on getting the IVIG study resurrected. But I don't know the timing of when they hope to get started.

Mom Md and all other ivig parents, , What was the dose on IVIG in the end? And at what point did you start to see improvement? My dd gets two grams per kg next week and I am obviuosly worried about the side effects. (And the turning back of the pages). Also any advice on pretreatment? She gets extremely bad headaches at one gram, two grams is going to be tough. Thanks

I have pretty strong opinions in this area, as many others on the forum already know. But I will not sugar coat it for you as some already have. First, 795 IGG is not an immune deficiency. You would be lucky to qualify for an immune def at 500. So the immune doc will test the quality of your immune cells and examine the ability to fight infection rather than the number of immune cells. (IGG Level) This is when they will run titers on HIB, DTP Pnemonccocal IGG levels. If your child fails to have have titers to the pnemovax that was originally given twice, then yes your child has an immune def, Do not let them revax, as in the case of. Alex's MOM she had a response to the vaccine, 90 percentt do and then your child is then dismissed. I am not sure her son would have received the two grams ivig had the doctor read her kids chart right. She will need to confirm this, I am just assuming. (The big question is how long does the child maintain the titers response) This vaccine is a test to see if your child mounts a response, checking the quality of his immune cells. It is not offerring any more protection. So if he already failed the vaccine as a child do not vaccinate again, your child could have a relapse in PANDAS, some are very severe. Do not let the doc tell you the vaccine will not hurt him unless you are talking with a PANDAS expert. Two vaccines already should be good enough to determine if your child has an immuned def. Be very careful going down this path, I would have Dr. BouBoulis consult, he is an immunologist and a Pandas doc and can help give you direction. Give him a call. Also have you run the Cunningham tests immunologists like this test to show autoantibodies which are seen frequently with immine def's. te name='kimballot' date='Mar 17 2010, 11:43 PM' post='60454'] I just took my 13 yo PANDAS son to the ENT and he was dx with sinus infection (story of his life - literally)... He also recently tested positive for strep (DNASE-B AB480) and mycoplasma (>5.0 detected; with >1.1 being positive), and had low IGG (795, with the norm range of 893-1823 noted) on last immune status panel in early Feb. Dr. T (my hero) recently started him on Biaxin for the strep and mycoP. The ENT took a look today and said he is truly getting over a sinus infection and he should see a local immunologist for possible pneumovax booster (he had one at 2 years old and one at 4 years old, so this would be his third pneumovax) and/or IVIG. Of course my ears perked up when I heard IVIG and I asked her if she has seen other people with numbers like my son receive IVIG and she indicated that she thought it might be a possibility - depending on the immunologist.... So.. I am looking for advice before I make an appt. with the local pediatric immunology group. My questions are: 1. If the immunologist recommends IVIG for his immune problem - is that the same IVIG that he would receive for PANDAS, or is that something different. .. and 2. What are people's experiences with repeated pneumovax shots. He never had any negative reactions to the two previous pneumovax shots, but he was young then and it may have been harder to figure out. 3. Does anyone have any advice on getting IVIG covered via insurance if it turns out that they recommend IVIG at a dose other than what would be recommended for PANDAs. I will check posts, and PMs are also welcome if you prefer.. Thanks so much - looking forward to learning from your experiences...

Supply of ivig is not a concern here at least not for now, it takes years for medical practices to go mainstream. As we all already know. Anyway, talking with ivig specialist, he wasn't even concerned about the new data on Alzheimer and ivig and its supply. He felt the production will match demand. It is blowing docs minds, they only wish they knew why is helps alzheimer. So invest in Talecris. Anyway, for autoimmune disease its the globins that inactivate the production of antibodies that work for autoimmune disease, that randomly are found in about 5 percent of the globins in each dose. Hence the higher the dose the more inactivation globins you receive turning off your autoantibodies. Currently some of the companies are looking into separating out these inactivation globins from the rest, (by molecular weight?) therfore having an ivig product( or monoclonal antibody product) that shuts off the production of antibodies without all the other junk not necessary for autoimmune disease. Anyway, the opportunities are endless. I wonder if Talecris stock is going to rise any higher ? Momto2pandas, Pleae contact Leckman with your contact info they want another study. Also call Tanya Murphy in USF and see if they are interested in talking with your contact. At least its gets the right parties talking.

Ok your immune doc is playing games. If your kids had a good titers respo against H Influenzae vaccine they will more than likely have a short term response against another prevnar. (Voiding all chance of getting ins to pay for anything) If they already had the vaccine with no response this should be good enough. Insurance only requires a low igg with low subclass also to prove CVID. However your child with higher IGG, then you need the selective antibody deficiency justification to prove a deficiency. But already had a vaccine this is overkill. So if your willing to travel pm me and I will refer you to a great immune doc specializes in b cell issues (low igg subclass 3 is an indication of b cell issues). Also if you had the cunningham tests done, the autoantibodies will help with immune def justification. He works with a shrink who prescribes high dose abx and will ensure your kids immune systems are reviewed by the immune doc. Your immune doc is just behind on the science, old school, or not up on the latest research. Again with ocd, tics, immune defs and autoantibodies this should not be an issue for ins, just don't call it PANDAS, rather autoimmune disease with immune deficiency.Clearly this person probably isn't the right doc, they would have only treated the immune def not the autoantibodies which requires different ivig dosages. The only problem with these docs I am suggesting is that they have a very long waiting list treating kids with serious life threatening autoimmune disease so its hard to get an appt. name='momto2pandas' date='Mar 12 2010, 09:04 PM' post='59731'] I am really hoping that someone can help me out here. Just got back from the immunologist. Both kids' labs are consistent with immunodeficiency (one of them is actually total IgG deficient, not just IgG subclass 3 deficient as the other one is). They failed the strep pneumoniae titers, as I mentioned before. The immunologist said that, given that we have now finished round 9 of various different strong courses of antibiotics and their sinus infections remain, and given their lab results, they should be treated with IVIG....if the lab tests come out the same way on repeat. The issue is - he wants to re-vaccinate with Prevnar to "prove" that their immune systems are not making a response, prior to repeating the labs. He claims that without this proof, insurance will NOT cover their IVIG, no way, no how. I don't get this - they have already undergone a full vaccination schedule and obviously didn't have the required response - and are showing both by labs and clinically that they can't fight infections...so why do we need to vax again? I refused the revax. They are doing decent with respect to PANDAS despite these infections (which, it turns out, have raised neither ASO nor mycoplasma - but they still have WAY high and messed up lymphocytes), and I don't want to rock the boat with Prevnar/Pneumovax. The immunologist repeat vaccinated me, and while it did appear bring up my immune tests, it was a neurololgical/mental health disaster that needed to be stopped with steroids. Not sure I'm willing to open that Pandora's box with the kids. So where does this leave us? Others on this board must have dealt with this before.... did you just bite the bullet and revax, or can insurance companies be convinced not to make us go through this, given the comorbid PANDAS diagnosis and the fact that we have already vaccinated? I can't afford to be giving 2 kids perhaps monthly IVIG for who knows how long, without support from our insurance. And obviously, I can't afford to let these infections go on and on ... and to keep them waiting as sitting ducks for something worse than a sinus infection to hit. To make matters worse, he wouldn't even continue their antibiotics, which had been helping a lot, though obviously not eliminating the infections entirely. The last course ended Tuesday, and ds6 is already ill again. This was ridiculous to me given that my child (his patient!) was obviously sick when I brought him in, and the immuno said that he could clearly see the green mucus up his nose. He said that he couldn't "just keep them on antibiotics for the rest of their lives." I called the pediatrician afterwards to complain and they called in Omnicef, which we haven't yet tried, saying that there was no way that we should just let a sinus infection rage untreated, particularly in an immunodeficient child.

Anyone who see's Dr Murphy, can you tell me if a one time consult will be worth the stress on my dd. My dd gets monthly ivig and her ocd is minimal right now. Her tics seem to still surface with infection and she is on high dose abx. As much as I want to sit down with the "leading expert on Pandas", I have to bring my kid with me and I am not sure the stress of rehashing the last five years will be worth the info she has to add. For those whom have seen Murphy please give me your advice. Thank you so much.

Could you please also post his ivig dosage (mgs or grams per body weight kgs) ) and how often he has received ivig. (Every three weeks?). At what point did yoi see improvement, after 5 months? Or earlier? Thanks again for posting.

Thanks for posting, please help our children and push this issue with the expert neuro's at Mayo. My dd had ocd for five years and after ivig for the first time it disappeared. She has an immune deficiency and receives ivig. Some OCD is caused by brain inflammation and autoimmune disease but the general medical community has poo pood all evidence of this. OCD can be a symptom of autoimmune disease and docs need to do a better job of ruling out this before using shrinks. Docs also have to be willing to treat ocd as such if there is evidence of autoimmune disease. (Blood markers). I am thrilled for your son. Thank you for your post. Maybe you could convince your docs to publish this finding in neuroimmune science magazine or in a rheum journal. The more evidence out there the more children whom will have their childhoods and futures returned. Thank you again!

He does not treat PANDAS, nor is he a pandas expert. So where does he start? I saw it with my neuro, he knew some tourettes is immune mediated but didn't know where or how to begin differentiating the kids. I am sure he has read all the articles on TS, you could send him Leckmans latest copy of TS and inflammation in the basal ganglia. But again this study does not give a treatment protocol nor does it help neuro's to differentiate these kids. (See Yale study header in acn forum today to get copy of article) I am taking this article to my immune rheum doc, although I think he already knows inflammation of the basal ganglia is likely part of the problem. I drove 7 and a half hours to see latimer. well worth it. It was also fun to tour DC for the weekend.

MamatoPandas and SFMom, My dd recently had high lymphocytes and she is on high dose azith with no infections that I know of receiving monthly lower dose ivig? What do your docs think of the lymphocytes, does this mean there is an underlying infection? Or can it be tied to autoimmune? SFMom how often have your children had high lymphocytes? I thought this number was suppose to increase and decrease with infection? Any info would be great. Also my dd had low CD3 and high CD52 killer cells any ideas what that is all about and does it tie in with infection. If my dd has been on high dose azith for months, how could she have high lymphocytes? I am thinking that this means the azith is the wrong abx, or could this be viral that causes the higher lymphocytes. I recently just got back my dd's tests results and the doc wants to go over them with me personally. So I have no answers right now.

Did you let them vaccinate with Prevnar or was this from original vaccine from pediatrician? I would not let them vaccinate again if they suggest it. My knowledge is limited to the fact that my dd has cvid and sad and also has super high lymphocytes and cd56 killer cells. (Recently found this out from specials studies done at university) Have you had your kids ANA tested and how were their neutophils? Also with a low igg3 subclass, you say super low this is an indicator of b cell problems. Many immune deficiencies cause autoimmune issues. So your kids pandas symptoms fit right into that category. Have your kids had the Cunningham test done? Did they have highly elevated auto antibodies? Please pm me and I will give you a docs name whom studies b cells, autoantibodies and immune defs, and also studied sydehams in the years past. (According to my father, whom is an immune doc).

Could you please let us know what dosage was used? Also how is your child now that you have stopped?

With a seven year history of tics, and changes in behavior that fluctuate, I would do the test. If he has auto brain antibodies, this will at least help you to continue PANDAS treatments rather than do TS treatments. I think it is a starting point and helps to set your treatments in the right direction. I am somewhat confused, is your doc recently thinking pandas with one month of Pen VK after seven years of tics? Some kids have severe up swings and downs, some get sick and continue to stay sick. These are the ones that tend to need more treatment and intervention. Cunninghams test are a very good start. She is a well published scientist with the respect of many immunologists in this country. Her tests may be preliminary, but immunologists notice when your kid has high auto brain antibodies. However this type of study may be way over your pediatrician's head. As my pediatrician said, "this stuff is leading edge science." Also I had one leading university immune doc tell my suburbian immune doc that he felt these tests were great science, very new science and what we do with them is still under review. But if your child has tics, and auto brain antibodies, it will lead docs down the path to assume that his tics are immune mediated and his treatment may change. Further investigation into his immune system may be warranted. ABX at higher levels may be prescribed in future illness. Your docs will definately look harder and longer with any increase in symptoms. If you ever need the support of the top PANDAS doc's having this test data will just add to the bigs picture justification to initiate treatment. I personally feel if you can afford the test it is well worth it. Without this test my dd would have gone the psychiatrist route, I would never have know she had an autoimmune illness. I would still be telling her that her fears are all in her head. And she wouldn't be receiving treatment for autoimmune disease and immune deficiency.

http://resources.metapress.com/pdf-preview...mp;size=largest try this i think

Melanie, I was looking for the old article and found another SOOOO much more promising!!! I want to stand up and cheer and take this to our docs! (And vicki lets mail this to Gilbert) I need help getting the full article if anyone on the forum can get it for all of us, it may prove very helpful in assessing dosage levels for the kids whom are getting lower dose ivig. Title : NeuroImmune Aspects of the Pathogenesis of TS and Experience in the Use of Immunoglobins" from NeuroScience & Behavior September 2009 Summary A total of 60 patients aged 6-16 with tics and tourettes syndrome were studied. Antibodies to caudate nucleus proteins(anti brain antibodies, I beleive they are similiar to cunningham antibodies) were assayed by western blot hybridization. Ten patients with tourettes syndrome were found to have these antibodies. (I am going to paraphrase) Anyway they infused the kids with ivig a SINGLE time, "which produced regression of vocal and motor tics and improvement in behavior. Remission of more than 6 months. In other words, kids with TS, whom had anti brain antibodies, had ivig infusion and went into remission for 6 months. Of note is that the kids they infused did not respond to the regular tic drugs. (neuroleptic drug resitent tourettes) Vicki, Shouldn't this be on Diana's website also for the parents?

Melanie , Please hang in there. I am thinking of you and danny. My dd didn't do well after ivig the first time her tics went crazy, I hear this a lot on the forum. There is a study out there, I rememember reading in regards to tics and ivig, it was done on late teens and adults. They saw no improvement with tics but at about the six week mark some felt it helped the ocd. I cannot remember the dosage. I will try to find it for you. It was not a PANDAS study rather a tourettes study.

Wendy, I heard the exact same thing from my t and b cell expert. He studies autoimmune disease and immune defs, he said probiotics. What strains are you taking? Also did he run any b cell tests on your kids? They put my dd in a study to analyze how her bone marrow makes b cells and to see if anywhere along the b cell "maturation" process her b cells are being made wrong. Also analyzed t cells. Are you familiar with any of this science? I was suppose to get results last week, but apparantly the doc wants to go through each number with us personally. Yuk. Again what strains did the doc recommend the most? Thanks,

Dr. T, Its not my child, but I still feel this uncontrollable need to say Thank you.

Melanie, What dosage did Danny get the first time, I believe it was this past summer when he was in the hospital? Shaes mom, I couldn't tell from your response was it three weeks post or three months post the original dose did your dd start receiving the monnthly lower dose ivig? Also what brand of ivig does she receive? Does she have any small set back after doses, like one or two days of panda symptoms?

I guess we could look at this as a good thing. As more info comes in, the more aggressive they must oppose. So we are now one step closer to acceptance. Thanks I think you all are right Maybe this is the beginning of the end of this controversy.