nevergiveup

Most are immune deficiency markers, which are seen low in pandas kids on occasion, some are strep titer tests, one I am not sure of the Mannose Binding Lectin, and if any can chime in and tell us what Murphy is investigating with this test, I would love to know. She is a very smart doctor and is fighting hard for our children to try and understand what is happening with our children. She rarely, offers up ivig, I believe when I checked with her office to date she has very few children whom have been treated with ivig, only those with immune defs. But beyond that, she will be one of the docs whom will change treatment and protocol for future children. She is sincerely looking into medical causes and for a psychiatrist heading this up this is remarkable. With the immune deficiency testing, it will be hard to determine if your child has one, since he is so young. All young children have underdeveloped immune systems early in life, because of our type of blood testing, the deficiency in blood markers starts to show as the child matures. Or as their immune system matures, or doesn't compared to everyone elses. It doesn't mean they didn't have the deficiency all along, just that the IGG levels will not relect a deficiency until later when other children immune systems start to grow and the immune deficient childs immune system doesn't. Some kids do show immune def's at your sons age, but this would be a very severe immune deficiency. Have you run the Cunningham tests, I have never understood why Murphy doesn't suggest these, she liked seeing my dd's results and likes the study. Butquote name='airial95' date='Jul 14 2010, 03:19 PM' post='75472'] I'm not gonna lie - I'm not sure how to read the blood work orders but this is what she's got checked: Ig Profile (G,A,M) IgE IgG subclasses: G1, G2, G3, G4 Mannose Binding Lectin Anti Deoxyribonuclease B(Strep)/Dnase-B Antibody Anti Streptolysin O Streptococcus pneumoniae IgG Antibody (13 serotypes) CBC with diff

Kaki, How long have u been waiting to see Sleasman? Make sure u have the Cunningham tests results with u when u see him. He studied SC years ago and kind of gets the autoantibodies cunningham is able to document in these studies. He is also head of immun and rheumotology and truly understands antibodies and immune deficiencies. He has several kids with tics ocd and immune deficiencies so he is familiar with the symptoms. Don't miss this appointment and call secretary of u want in sooner they are great people there. But get the cunningham tests, immune and rheum docs like blood markers. Dr Sleasman treats my kid and if Murphy gave u this referral consider yourself lucky, she doesn't refer everyone to immune. PM me if u want more info. We saw Dr. Khalil, filled out lots of questionaires, and bloodwork. We got a referall for CBT and Dr. Sleaseman (Immunologist). We saw Dr. Murphy maybe 5 minutes. That was that. No follow up. They sent a report several months later diagnosing my daughter with what we already knew she had, autsim & anxiety/OCD. The bloodwork was extensive and mostly normal. We are still waiting for our appointment with immunology. It really wasn't helpful for us. I hope it goes better for you.

Vicki and Kelly, Thank you so much for all your hard work. (From me, my dd and my future grandchildren) What you have done will help so many families and change the future of pandas. You guys are awesome!

Hey, vicki how about we do a cvg lunch, I can come and so can one of my best friends, we have been very close friends and neighbors for over 10 yrs, and her youngest child was just diagnosed with SC and pandas after getting H1N1 mist. So we will have three moms in cvg. Plus can fill u in at lunch on some of the docs starting to treat in cvg. Beth. PM me and we can set a time and place. name='Vickie' date='Jul 1 2010, 06:44 PM' post='73866'] I'm happy you're able to get together! I have yet to ever meet another PANDAS parent or child in person...at least not to my knowledge.

Ok so I will assume these are psychiatrists whom your dd is seeing. I find it hard to believe that they ever ordered up ivig for any patient. They say it doesn't work because why, I would insist on documentation on where they have received this info that ivig wears off for all pandas kids. The one published study by Swedo showed improvement at the one year anniversary of ivig. Medicine works like this, if you see a shrink you will be treated for OCD and rages with SSRI, (that's all they know they are not immunologists), if you see an immunologist you will be tested and treated for immune deficiency and told ivig help tics and ocd and the immune def, if you see a rheumotologist you will get steroids for an unknown autoimmune condition, if you see an ENT you will get a tonsillectomy for recurrent strep and told this also helps ADHD and tics, if you see a neurologist you will either get clonodine or dopamine agonist drugs because that's what they know. Doctors are not much different than plumbers, they have a protocol and a task. My dd has seen all of the doctors above listed and prescribed the above items also. If you are not with a PANDAS expert, then you are getting medical advise about something other than pandas. In complicated new diseases like PANDAS your success is not contigent upon if you see a doctor, ITS contingent upon which doctor you see. (My uncle who is a physician always tells me of this.). Your dd sounds like she needs the cunningham test and then an appointment with Dr Latimer to consider PEX. (This way you do not need to be concerned with ivig) Dr. Latimer will be back seeing patients in August. I am sorry the psychiatrists want to admit her, if this attack is from Pandas then she has brain inflammation and cannot control her own feelings. Any amount of counseling or SSRI will not help eleviate her illness.

I am so sorry your dd is not doing well. My dd gets monthly ivig and although there are risks to ivig in regards to blood product, they have been minimized in the last several years. I believe I read somewhere that over 35,000 children receive monthly ivig in the US. There has been no transfer of disease from ivig in the last 10 years. Now, I cannot remember where I read this, but I do know that the ivig is safer now than ever. My concern for you is Why do your 2 specialists say ivig won't last? I do know it helps and helps a lot in some cases. What are they proposing that will last? Do they have a better track record than ivig? PEX seems to help immediately and you can eliminate some of your worries about ivig? Why would the docs need to hospitalize your dd? For the kids they have treated with ivig that didn't have lasting effects what did these docs do then to help eleviate there disease? Were they successful? I am concerned as to the quality of information you are receiving from your docs?

Thx Ellen, I think there are two kinds 5 percent and less than 2 percent. Maybe the S/D is the 5 percent, not the 2percent. But I am still not clear. The S/D is also in powder form and I need to clarify the volume issue? Is it still not measured in grams, does that mean that you increase the sterile water mix or do you need to increase the grams also to be equivalent to the regular gammagard? I will ask my doc. I know my dd has her mixed in a sterile environ at childrens hospital so the volume is purposely rediuced (sterile water) and then becuz the concentration is higher they jiust reduce the infusion rate so she doesn't get too much med. Her infusions last less than 2 hours for one gram per kilogram. Seems short though, they don't mess around with getting it in since my insurance only pays 81 $ per infusion for the home nurse.

Melanie, This poll can be confusing. Some have had one time ivig's other one high dose followed with monthly one gram doses. Some have had several high doses with no followup monthly. Some just low monthly doses with no high dose. Some a one time low dose. I can say my dd is more on the protocol of Danny. Seeing improvement. I have talked with three mothers now whom do monthly ivig for immune deficiencies at one gram per month and all have seen improvement.

Diana and SF Mom, You guys have worked so hard for the kids. That's great for the California families.

Coco and Ellen, What's the difference between Gammagard 5 percent and Gammagard S/D. I am confused a little, my dd gets gammagard S/D. Also why more medicine or volume? Is it still not measured by Grams? Any help on this is greatly appreciated! Never give up

Dr Brunner in Rheum at Cinc Chlds has treated sudden onset ocd with ivig with success. She is booked up with her lupus patients and the wait can be months to get to see her. Also the immune docs in the hemoc/bone marrow transplant/immunology division (not allergy and immunology) have several that are "PANDAS like" with immune deficiencies that are on life long ivig. Whatever you do, do not ,NOT go the neurology route you can kiss your ivig chances goodbye if you do. (In Cincy) Also Shott at Cincy an ENT published a case study on tonsillectomies and pandas and with evidence of strep and tics will recommend tonsillectomies.

That is great. I hope it gets published.

Kim, A protocol would be nice. Sudden onset tics and ocd "according to Gilbert and Kurlan" are also seen in TS. Stress triggers TS and so does illness according to these guys. And at this point Gilbert defers all ocd to psych. I don't quite sound like my name today, sound like I am giving up, but I am sure these guys, Kurlan and Gilbert won't be treating pandas any time soon. Even with Swedo's new study. Spend several years taking your child to Gilbert and watch his "spin" on this. He does everything in his power to make sure these kids are not treated. He does not want this treated by neuro's if it is autoimmune. I agree with you though and a protocol would be great.

I am so glad you kept looking and fighting for your dd. I am so happy for you and your family. My dd had a very bad rsv three weeks ago and came out of it without a major relapse (We did add another abx though). So I am also hopeful, cautiously hopeful. Some day when this is all behind us, we need to celebrate with t-shirts that say "Pandas Survivor". In NYC for a weekend. Gather all families and celebrate. One big loud party.

Buster, Diana, Kim and T mom, These guys especially Gilbert knows that tourettes and ocd can be caused by an autoimmune disease. (As Diana said from Leckman). In 2002 Gilbert told me that tics are most likely three different diseases, Either autoimmune, birth trauma- trauma related and developmental/genetic. My dd had an extremely high ana with chronic illness and no one thought her tics weren't from autoimmune. Gilbert even prescribed steroids. These stupid articles only influence the pediatricians whom barely skim over the subject. Without Diana and Cunningham my dd would have been in a psych ward. Blood markers they love. All immune docs now say wow your dd really fits the pandas profile, years of relapse and remit, low igg, high antidopamine antibodies, high ana that reduces with ivig. Basically what I am trying to say is neurology will not be the ones to change this disease protocol. All they want to do is separate out the immune def kids and send them to another specialty. Its not their specialty and they will always emphasize the other neurological deficiencies that they better understand and are working on for tourettes. Gilbert told me himself that the immune disease needs to be with rheum and immun docs. Its a shame these neurologists are so into their own success and research that they cannot even try to open the doors for the kids whom have pandas, out of fear of every parent wanting abx or ivig. I am not sure what I am trying to say here, other than do not get upset over Kurlan, he is just into his own study with mirapex, he has been consulting on this drug for rls (for rls patients not tourettes) for many years past and now he heading the five million dollar tourette study of this drug. Dopamine is his angle, autoimmune disease just complicates his objectives. So I am glad Swedo is doing another study. Does anyone know how long the study will take? Are they looking at PEX again? I agree with Buster that Kurlan and Gilbert slant their language, so that the uninformed easily dismiss the autoimmune component. What's so weird is that both know ocd and tics can be caused by an autoimmune trigger. They have forsaken our children to make their lives easier, so they can continue to manage TS as a genetic developmental dopamine disorder. After swedo's study with 30 more kids do you think this will be large enough to sway them? They want markers to distinguish these kids. 15 minutes they have with each patient, how will they know who is pandas and whom is not in 15 minutes? Dr T and Dr B and Dr L spend far more with each child. I look forward to swedo's results, but even with her results it will still require the parents to fight for their children. 15 minutes per child Gilbert has, and if you are "lucky" enough to see Gilbert all followup is scheduled with his nurse practitioner.

Have your doctor call Tanya Murphy, she is on the board for Got Strep? Pandas Foundation. She is an amazing expert in Pandas and has a study on both cefdinir and augmentin. She can report dosage to your pediatrician. She recommended to us augmentin, says it appears better for tics. Still not done with cefdinir study. She is located in Saint Petersburg Florida. She really knows her stuff about the immune system and may also be able to direct your ped on immune testing. Dosage and length of abx are important, and most pediatricians don't have any guidance on this. Once her studies are finished and published, pediatricians will have more info. I am not sure how she feels about zithromax, your pediatrician can ask. Good luck. My dd was on penicillin vk and this was not strong enough to prevent relapse so I do think having the right abx is important to prevent future relapse.

I want to add a fact that has not been mentioned. Immune deficiencies lead to higher risk for autoimmune disease. Therefore having an immune deficiency puts you at higher risk for autoimmune disease. So I am assuming this is why we are seeing a much higher instance of Pandas in immune deficient children. I have an immune-rheum doc who says he has several kids with neuropsych symptoms and immune def and autoimmune disease. This doc does not treat pandas nor does he necessarily believe in pandas but he does know that several of his immune deficient kids have tics and ocd.

I think it is referring to Trifilleti's types of pandas, one was hyperimmune, one was immune deficient. He was breaking down the different presentations of symptoms of pandas. By the way peglem, I liked the article you posted on ivig in the previous topic.

Buster and JAG, I just wanted to add some of my immune research I have done in regards to immune deficiency, ocd, tics and autoantibodies. I have consulted with 6 separate immunologists whom all agree that immune deficiencies and autoimmune disease are closely related. My dd has an immune def, not terribly low igg but low enough 480 level to justify treatment. She also has autoantibodies of dopamine one from cunningham. I had my dd submitted for a b cell study, where the study looks at the maturation process of b cells, starting at nymph b cells up to mature b cells. My dd's b cells came back in the mature stage as overactive signifying they are attacking her body. This b cell behavior is seen in other autoimmune disease. (This is seen in lupus and other au disease, but my dd only has pandas or SC) I think the issue here is that if you have a child with an immune deficiency (any, low igg, low iga, low igm, any low subclass, non existant pnuem titers) this predisposes them to have an autoimmune disorder. The theory is that the immune system cannot fight an infection and then overproduces antibodies to try to compensate for its immune deficiency. Anyway, many panda parents and families have a history of autoimmune disease. Can a one time infection trigger a hyper state and cause overproduction of antibodies? I doubt it, I believe these kids are predisposed genetically with either an immature immune system or deficient immune system. And once overstimulated (the moon and stars aligned ) they could start producing autoantibodies. With a broken immune system or one that is not mature enough yet, the signals could get crossed and over production of antibodies happens. We see it with all autoimmune diseases that flair with viruses. Once the autoimmune process is triggered its hard to calm it down.

Ok so my dd is on 500 mg daily zith by a pandas doc. It has really helped her. She is doing better on it. Now however, she has gotten a bad URI and after 5 days of fighting it, she now has a high fever and sinus, ear and bronchitis infections. So my question to all families who rely on the zith to keep the pandas symptoms down, what do you do when a penicillin base abx like aug or cefdinir are needed? Do you do both or do you take a break from the zith? 500 mg of zith per day is a lot. But adding on the other abx is needed right now considering the zith did not prevent the infections. I know some take both and any feedback on how that has gone would be appreciated. Oh and all this on top of monthly ivig for immune deficiency. I wish my dd wasn't sick with this infection. Thanks.

Ok. So also did Kurlan take into account that maybe some of his kids lived with a cat(family member strep carrier) which would completely screw up his anaylsis, I think? Buster, why don't you send this to Kurlan to see if he agrees with your analogy. It would be interesting to see what he comes back with. It may just open his eyes also to something?

For all those parents with a fifths disease correlation, Dr. Murphy, mentioned to me about the high ana associated with this illness and the lupus like symptoms which my daughter had after fifths disease. My dd had it twice , very unlikely but she had two bad cases of it which may have caused her extremely high ana and lupus like symptoms of cns symptoms of ocd and tics. Something that was just brought to my attention years after her illness. Of course my dd has an immune def which may have been the cause of the reaction, but if you look up fifths it has a correlation to high ana, autoimmune disease and even mental illness.

I like the way you think EAMom.

Melanie, Could you please let us know how Danny is doing? Did your immun say she sees monthly ivig help ocd and tics. I had an immune tell me that he sees improvement in this. Not cured though in his CVID patients. Your son is getting the ivig very frequently it may be doing the job at one gram since he gets it every three weeks. If she worked with Swedo why does she say the ivig didn't cure the kids. I know 80% had improvement. I guess cured is a different word.

NancyD Thanks for sharing. I am also in the process of trying the high dose after several low dose. Have you considered monitoring your dd's autoantibodies to see if they rise and therefore need high dose ivig to stop the production of these antibodies? That's what we intend to do after this next infusion.