nevergiveup

Worried Dad, Follow up IVIG was done by immunologist for CVID. However Dr. B (another immune doc) gives much higher doses for autoimmune issues associated with CVID. Not a standard protocol. First IVIG was done by Dr. L, seemed low compared to what she is prescribing now. I am not too concerned though because my dd cannot handle too high a dose. She reacts bad to the IVIG. Her one eye even gets lazy for a week after each infusion. ODDD??? How's your son doing? I know he is on high dose augmentin, but I have also been told IVIG keeps altering the immune system and you can see changes up to 2 years. (A neurosurgeon told me that IVIG has many things unknown about how it works, but that IVIG can alter the immune system in different ways over time, they even have seen changes up to two years post? )

Not only fish oil but motrin is also a blood thinner. Wow, thank you. This makes me wonder problems about heparan (hep sulfate), Antiphospholipid syndrome too. Also, wonder if the blood thinning effects of fish oil could be helping in some instances?

Are you treating PANDAS with a one time high dose or are you treating also an immune def. with monthly IVIG for a six month trial? If you get to choose, I would do the Dr. K dose, 1.5 grams per kg over 2 days. And then monthly infusions like Dr. B prescribes Up to 1 gram per kg. My daughter currently gets 550 mg per kg. Every 4 weeks. I know her ANA is already drastically down to 1:80. which is a large change from 1:2560. She doesn't handle IVIG like most of the kids on this forum. She had a one time dose of 1gram per kg. and she was sick with a migraine, fatigue, dizziness for over 3 weeks. Missed a lot of school. Premedicated with tylenol, benedryl and steroids. So her doses are low right now. We will be drawing her autoimmune and immune blood markers this week to see how the monthly IVIG's are going. mom md' date='Dec 2 2009, 07:45 PM' post='46868'] I know there are multiple ways to do IVIG but we are getting ready to do it here. My doctor is waiting to get dosing and protocol info from Latimer. Doe..

Debbie, No after steroids no more heart racing. She was very sick with pandas at the time of heart racing. Her heart raced for over 4 hours and we couldn't get her heart rate down. I think in the end she had several different kinds of sedatives. I know the first sedatives didn't work at all, I believe ativan, valium and who knows what else. She was suffering from "compounding viruses", it was March and that winter she had 7 viruses in a row. At the time we swiched her to zithromax for the first time and it was her third dose and sometimes it can cause heart racing. Rare but it is one of the side effects. But later after the steroids everything cleared up. I remember it being very scary. If you go to the ER, after they rule out physical causes they will assume psych, so watch out for the ER psych consult. My daughter was so little and they asked her if she wanted to harm herself, or others. Also if she wanted to start fires. That was the end of the psych consult for me. I left the ER disgusted. My daughter then spent the next week asking me if she wanted to harm herself. She wasn't sure after the psych consult. Nothing like putting scary thoughts into a child's head that has OCD. The next time my daughter had a serious pandas attack we went straight to Dr. L's office, not the ER. I think I would agree with Denmark, it is caused by elevated Cam Kinase. Have you had the Cunningham tests? Did they ever figure out the cause of the heart racing? Was she still having the heart racing when she started steroids?

Debbie, My dd had two occurances of heart racing. Valium did not reduce it. We went to the ER and they couldn't get her heart rate down. She had several more attacks for several days after this. Then it disappeared. She was having horrible intrusive thoughts at the time. It was a hard time but short lived. Neurologist wanted to give her Haldrol in ER. Idiot. Later got steroids and she went into complete remission within 5 days. Stayed on steroids for a month.

Coco, How many monthly IVIG's has she had? Does she back slide after the IVIG's? My daughter told me after her last IVIG she had some OCD. For about 3 days started approx. 24 hours after infusion. After IVIG she has had a surge in symptoms temporarily. Does Dr. B have any children he considers back to 100 percent after months of IVIG? I can relate to your concern. Everytime I think my child is close to being 100 percent we have a setback. The good news is these set backs seem to be more temporary. I believe shaesmom has a great recovery story. I am hopeful. I am very optimistic. It takes years for the brain to heal assuming no additional attacks. attack at age 7

I remember years ago reading an article about MS and how before and during relapse MS sufferers had stiff and painful necks. Interesting huh?? Could this be related to PANDAS, on the pandasnetwork many of the relative have ms. (Myself included) Could the iron deposits and potentially other chemicals "stuck" in these brains be the reason why the T cells are attracted to cross the BBB. As Buster mentioned in the t cell post some "chemical" is pulling T cells to cross the BBB. T cells cause MS brain lesions. Do they also cause PANDAS?

Coco, Ellen, Right now she gets 500mg/kg, too low. She did have 1 gram/kg in May and it caused severe fatigue and headaches for 3 weeks. Coco does your child have side effects from the infusions. I am meeting with my immun on Monday to discuss a higher dose. I believe I will need a consult with Dr. B. Does Dr. B require high strep titers for a confirmation of PANDAS or just SAD and CVID and OCD and chorea? My dd has never had high strep titers but she has a CAM Kinase of 164 and an ANA of 2560. IGG's 493 and every Pnuemoccal was failed. A history of chronic infection low IG4 and low IG1. Plus a C4 that stays very low even after IVIG. Thanks ote name='coco' date='Nov 24 2009, 03:20 PM' post='46035'] Hi NeverGiveUp - I know that Dr. B does 1 gram per kilo of weight when doing monthly ivig for my dd. I hope that helps/gives you a reference point. coco

Ellen, Elizabeth and Melanie, Hi! Have a wonderful Thanksgiving. I will be giving thanks for all of you, who have helped us all by sharing your most intimate struggles. I am also giving thanks for all the new support our children have. Your stories are helping many get help. My dd is currently getting monthly ivig. I think her dose is too low, so I will need to consult some additional docs. She is actually doing well, its just with her autoimmune blood tests ANA and C4 are still showing an autoimmune issue. I have heard, Ellen, about T cell defs but don't quite know yet what they are testing for. Heard Dr. Sleasman at USF with Murphy is looking into this. We are going to USF for an immune consult. I will let you know what they test for. Does Dr. T treat with Abx, steroids, PEX and IVIG?? Thanks, Beth

Peglem, OK. They are low enough to justify monthly IVIG for insurance. Don't take your kid off abx, all these kids with CVID tend to be on long term abx for chronic sinusitis. My daughter was and yet over the last 2 years or so her infections were much less. Document all the infections, even the one's not seen by ped. Have ped call immun doc, is your ped on your side???? Don't draw attention to the timing of the infections rather the large number over the last 10 years. We went back many years. Have you read the gammagard web site about CVID? Some lab results scream IVIG like those with IGG's in the 200 or 300 range. Some are not as low but with a history of chronic infection, they may try high dose abx for a while. With no change, then IVIG is recommended. Its up to you and your ped to present your case. Some kids have almost normal levels of IGG's but still suffer from chronic pneumonia and then the docs did deeper for Selected Antibody Def. Lets face it most parents would be devasted by the thought of monthly infusions of blood product so immun docs try everything else first. Rarely do they have parents desperately looking for IVIG. Their gut is to avoid IVIG unless completely necessary. (Who in their right mind wants IVIG for their kid, however what these docs don't know is how severe PANDAS is) Your child DOES qualify, so I am thinking after all you have been through you can now sit back and rest. If this doc won't do it, many others will. (Hint: find an immun doc that also has an infusion clinic combined in his practice). Its both clinical presentation and lab markers that justify treatment. Her low IGA's complicate things, not to mention make it much more expensive. She runs the risk of a serious adverse reaction to IVIG (allergic reaction) so your doc will need to source a special blood product with low IGA's. I am very hopeful.

Peglem, No strep! try to Not talk with the immun doc about this, it is confusing the issue. CVID and selected antibody def have to do with resp, (pneumonias, RSV's, bronchitis ) sinus and ear infections and other infect too like cosackie and influenza. Take out the strep and document every infection. Go back to her school attendance record to show how often out of school. They like to see absences from school to. One sheet of paper with date of infection, type of illness signed by pediatrician. These kids also have fatigue on and off, joint pain on and off, some have an autoimmune component like high ANA or low C4. Go to the Gammagard web site and read everthing about CVID. My kid was out 30 plus days per year every year since Kindergarden, she's in 7th grade. What exactly were her IGG,s IGA's, Can you give me a number?? (IG4 subclass still contoversial) These are much easier to justify IVIG than the pnuem titers levels. Mama2Alex, 600 mg per kg, not bad. I am going to try to get my kids higher than her current 500. Good luck with the 2 grams for two days, I am sure they are shocked by this. My kid could only handle 1 gram per kg, it made her sick but everyone's different. As for measuring the eating of the immunoglobins. They draw blood out the IV line after infusion and measue IGG levels, then again before next infusion they draw blood out iv line before infusion to measure IGG levels. If levels drop a lot they will up next dose. The idea is to alter the immun system permanently, therefore as the infusions continue the drop off between pre and post each drop off should be less and less showing that the body's immune system is working. Until pre and post stay sky high, then you know you may not need more infusions or higher dosage. So lets say pre ivig Igg's are 400 and post they are 1600. Next pre may be 400 again showing wrong dosage. They then up dosage next time so post is now 1700 and the next pre ivig is 600. This continues until IGG's are very high pre and post IVIG. I am sure they can do the same with measuring the pneumoccocal titer levels. My daughters pneum titers went sky high after IVIG but went back to low again post 12 weeks. I am glad you have such a good immun doc. I am also glad that you have found the problem. Some feel that the PANDAS symptoms are caused by the immun def. Obviously PANDAS symptoms can be caused from many different diseases, understanding where they are coming from can be half the battle.

Yes she always did in the past

Peglem, I agree with Mama2Alex. Get a history, one sheet piece of paper of every sinus infec, resp infect, antibiotic scrips given over the last 6 years or so. Also there is no reason to revaccinate. See a different immun doc if you don't get anywhere. If your ped is on board that is very helpful and helps the immun doc justify treatment. YOU need infection documentation. Even with a dad as an immun doc, my pediatric immun didn't really take notice until my pediatrician called and said this kid is sick all the time. I think you are almost there. My doc had the nurse call too, after I said no vaccine and my pediatrician called it was all worked out. My father said my daughter had to have vaccine and to just follow the procedures. My immun doc said she didn't agree with my father. So find a new immun doc if this one doesn't budge. Where do you live, maybe someone on this forum can recommend someone. Mama2Alex, Try to get largest dose possible for SAID. The higher the dose the more effective the IVIG's are for PANDA symptoms. Coco was getting a low dose 200 mg per kg. My kid gets 500 mg per kg. Both are way below PANDAS dosage. Dosage is key to help eleviate symptoms. Are they saying a 6 month trial or lifetime? With a six month trial they tend to do higher doses (than normal) because they are trying to alter the immune system. The IVIG's will really help with pneumonia and overall health of your son. I am very interested in dosage so please let me know what they are thinking. Also there is a study in Allergy and Immunology showing one case with remission of "PANDAS like symptoms" after 3 SAID IVIG infusions. I am not sure what dose was used on that, but PANDAS symptoms reappeared every 3 weeks so dosage was too low. You may want to check on that. I am currently trying to get my dd dosage higher. They are measuring before and after each IVIG to see how much she eats up the globins, and if they are "eaten" rapidly then she will start getting higher doses. Just an FYI.

Melanie, Do you know how much your insurance paid the first time? Try to negotiate with the hospital over your cost, it should never be more than 65 percent of the billed amount. Also go to your HR or benefits representative get them to tell the insurance company that this is not ok. They listen when they think that they may loose a very big account. Also try a health ins advocate. See if you can have the procedure done ASAP and work out a monthly pmt plan with the hospital. Then fight all avenues with insurance. Since they paid it once and your doc saw improvement you have a great case to question their rational for denying it this time. I know how frustrating this is it is unquestionably horrible when our medical system pays for unnecessary surgery and procedures but won't pay for a serious illness. I just went through something similiar and I know its hard to get through the day when it feels like no one really cares to help unless its easy. I am praying for you and your son. What dosage is he receiving that he needs to be hospitalized? I don't get that part does he have low IGA and may have a deathly reaction? How did he tolerate the first infusions? I know they give very large infusions for all kinds of autoimmune things and they are usually done at home. First infusions at site after tolerence is established at home. Seems like neuro are scarced of IVIG , immun docs don't think nothin of it. I think maybe your doc is practicing defensive medicine and is just overly cautious.

Vicki, From very nearby. Anyway, for a ped Dr. Arar has seen first hand a very young boy suffer a severe pandas attack and is a believer in its existance. If you need a ped I would recommend her. I highly recommend having your sons IGG's and ANA checked. Also Don Gilbert said Dr. Brunner in Rheum has treated sudden onset OCD with IVIG. She's at childrens. Almost impossible to get in to see. Waiting period is months, she sees lupus kids so is normally booked with very sick kids. Does not specialize in PANDAS but has treated. Also gives steriods if she see's undetermined autoimmune markers. Thats whom I know from CVG. None believe in PANDAS rather believe in an autoimmne component of OCD and movement disorders.

What this study is trying to say I am not sure. If SC doesn't show signs for up to 9 months after the strep infection these correlations don't mean much. Since many studies prove children get on an average 2 strp cases per years in elem school years, what are they trying to say here. Without an accurate swab this is just a study of parents opinions. Most docs waive the strep test if child has signs of sinus infect or resp problems because they are going to prescribe abx anyway. Don Gilberts comments were I believe that the study is lacking. He is a statistics guy and knows that this study doesn't measure whether TS has an autoimmune component. He has a problem with parents whom have an opinion any opinion medical. Plus he says right on his web site if you are going down the path of PANDAS try other docs, he doesn't feel there is enough evidence or studies to justify treatment yet. Interesting enough though, he did run tests on my kid to check for autoimmune issues and referred us out of neurology.

Buster, and Coco, Thanks so much for this explanation. I really need to understand this stuff, so I can talk with the immun docs. Now I finally understand why my old neurologist ran these tests but never put much thought into them. (He works with Singer a lot, but hes also a statistic guy and would clearly understand this) So I don't know the brand used at the hemoc center in Georgetown but it is not the Dr K brand for sure. My daughter could not have had any more than the 1 gram per kg because she was in lots of pain. Supposedly Gammagard SD (the stuff she is getting tomorrow) has no sucrose, I need to check again. But in a study against straight gammagard, headaches as a side effect were much less with the SD product. You have to special qualify by insurance (how sad they are always messing with our care) to get the SD, low IGA's I believe. But my daughter didn't have that so I am not sure yet why she got it, probably for the less side effects. As for the C8, they only ran 1 through 4 and then a different type of marker called C25, which was normal. I will ask about C8. Thanks. Coco, usually IVIG's are prescribed by weight. So when you said 200 mg did you mean per kg if so then yes this is very low for SAID. I thought normal was 400, my doc is giving 500 because she wants the dose to help her PANDAS, also, not just CVID. I do not think she could do much higher than that every 4 weeks. She would be too sick from fatigue if she did a higher dose monthly. Aren't you with Bouboulis? My daughters pnemoccocal titers were much higher, passed almost all, 7 weeks post the PANDAS dose IVIG. Didn't last though, 12 weeks post they dropped off again. So it seems like a higher dose would help. Again check your dose it seems drastically low. Thanks for all the advise.

Buster, Yep she was constantly struggling with sinus, respiratory, ear, cosackie, (several times) from age 3 on. Every three weeks she was ill for years. Her ped always tested her IGG's yearly from age 4 on, all were normal. Not untill her first PANDAS or SC attack at age 9, did she finally have a super high ANA 1:2560 and low IGG's, low IGM's and a very low C4. Yep lupus was on the table, still under review by doctors. But looks like not. (Thank goodness) My d has an autoimmune illness but the interesting thing is she has never tested high for Strep titer or antidnase titers. She was tested pretty consistently over the last several years for strep titers and they all came back on the low side. (At least 5 times). Does that mean she can't mount a response against strep? What is the difference between strep titers and Cunninham's antibodies? When immune docs look at selective antibody def they look for low titers for specific illness. We always talk about high strep titers, what about very low or non existent titers for strep? Would't that also mean something? My d will get 500 mg per kg or 15 grams every 4 weeks starting this week. They are giving her gammagard SD to prevent headaches, she was in serious pain after her first IVIG in May. I hope the monthly infusions help. It definately helped with OCD, allergies and her overall fatigue and chronic illness this summer. We are hopeful. Thanks

Thanks for the response Buster. Her latest blood draw from Cunninham last week came with a range of normal for the antibodies. A little different than presented to me in August from Kathy. Thanks to everyone for inquiring about her antibiotics. She has been on azith 250 per day since IVIG in May. We even had our dog on antibiotics to insure no family contamination. We swiched 3 weeks ago to AugmentinXR 1700 mg per day, she weighs 75 lbs. She always had low IGG IGM's for the previous 3 years. After her IVIG by Dr. L her IGG's dropped again and Immun docs agreed she has CVID. She starts her monthly IVIG's Wednesday. Only half the dose, she received in May but monthly. I am guessing with low IGG's if she has an infection maybe she cannot iradicate it. But most likely she has an autoimmune disease, overproducing strep antibodies and her body cannot turn it off. I can only hope these monthly IVIG work. I am concerned that we are downloading some of these antibodies into her with IVIG. I want to better understand the auto antibodies. Has anyone ever gone on gammagards web site. CVID has an autoimmune component plus low IGG and IGM's. No doctor ever explained any of this to me. Plus joint swelling, gastro problems, it sounds like all the PANDAS kids. Anyone trying to see an immun doc should read this web site. Any advise welcome. My daughter had one severe attack at 9 and a second at 13. Her first attack lasted severe for one and half years. She was better for more than a year and had a second overnight attack in May. Although after IVIG I felt it didn't work, my daughter said in August and September that she had never been better in her life. She said she was quietly suffering from intrusive thoughts even when I felt she was in remission for years. She says IVIG got rid of them for the first time in 4 years. Do you think with CVID she cannot fight the strep with high dose abx or is her immune system on auto without strep?

Looking for feedback from Mommd and Buster and all other scientists. When our kids immune systems over react and produce these antibodies that Cunningham has isolated and tested for, what made her look for these specific four antibodies??? Are they anti strep antibodies? (All four). Why four different antibodies? My previous neurologist whom doesn't believe in PANDAS but does think TS and OCD can be an autoimmune response once told me 5 years ago that different antibodies cause tics versus ocd? If so does strep trigger different antibody production? My daughters ANA is so high and after IVIG her ANA was way down, but now her Cam Kinase is rising again 6 months after IVIG, and her Dop 2 is now elevated. (After IVIG it was within normal limits). She has asked for another IVIG, (she was sick for weeks after first IVIG). She knows things are getting worse again. Once the immune system is trained to produce these antibodies isn't it going to be hard to shut them off. Like in Lupus, MS and Chrons. My daughter has not been exposed to strep since her IVIG in May. She has had a slow worsening of symptoms over the last three months. Any feedback? Thanks

Hey Buster, Wanted your opinion on what Shannon posted about a week ago about her immunologist Sleasman down at USF. She stated that he has seen some of the PANDAS kids from Murphy's clinic have t cell deficiencies. This apparantly is not commonly tested by immun doc. You can have normal t cell numbers but individula T1 or T2 deficiencies. Apparantly not curable. Anyway would this explain why high dose antibiotics may help. Apparantly Tanya Murphy is also starting a high dose augmentin study. Anyway just thinking there may be some correlation. If you had a t cell deficiency would that potentially let strep linger and hide out? I have an appoint down with these docs and the head of immun at USF and would like to go down with some understanding of what they are looking at? My daughter was recently diagnosed with CVID but I am wondering if there is more to all of this, we talk of super strep strains but couldn't it be faulty immune systems? However, xmrv has rocked the science world lately, hiding out in immune cells, maybe strep is hiding like viruses I agree.

Is anyone using AugmentinXR, I believe this was the brand sammy used. This is an extended release tab, gets bacteria in harder to reach places like sinuses. I know the warning says not for children under 16. Any ideas on if this is an issue for kids liver? Also what is the high dosage rate for a 74 lb child? I noticed that the dosages on this forum are all over the place?

I am praying for you and your daughter. Keep trying. Have you ever had her ANA tested? Rheum like this indicator to justify an autoimmune disorder and treatment.

Hi Char, my daughter had multiple facial and head tics some hand from May 6th on. She woke up on May 6th and said oh my gosh mom its back. She had been diagnosed with SC at age 9, later doctor decided it was TS. Went into complete remmission for 16 months and woke up May 6 with chorea, cognitive fog, ADHD. She had IVIG in about a week. She still had funny longer tics after IVIG they seemed to get less and less over 4 months, but still chronic and daily. OCD completely gone. She says she has never felt better. She got the flu last week had terrible tics day before fever actually had terrible tics when her fever started spiking to 102 within the hour. Ped gave me tamiflu ( took drug within first 8 hours of fever and with two hours no fever and No tics. We would see a few right before her next dose but they would disappear within the hour after the dose. Listen this drug is not great for kids I would never had used it if my daughter didn't have an immune def. But it is interesting though. Why did it stop her tics, i can only speculate either 1.). She has some intracellular virus and the tamiflu does the same to viruses as antibiotics do for strep. 2). The flu rebooted her immune system, I have several doctors in the family whom have seen viruses like the chicken pox or others that have rebooted the immune system and put luekemia in remission or other illnesses. (Very rare but it has happened ). Or. 3.) Total coincidence. Can't ever rule this out with tics. 4) Tamiflu increased the BBB. ? I doubt this though because studies show tamiflu does get into your brain. However I would like to find out about olive leaf extract apparently it is used as an antiviral and autistic kids have seen improvement from this? Know of anyone who has had success with high dose antiviral and tics? I am assuming dosage is key since tamiflu is pretty strong stuff. So if you have any insight into dosing I may try it. and quote name='Char' date='Oct 19 2009, 02:42 PM' post='41615'] nevergiveup, Hi, how long did your child have tics for and what were they? You said the TAMIFLU stopped your child's tics??? Does she have any now? Is she still taking the TAMIFLU? Very Interesting?? I am happy to hear your child's tics stopped? The IVIG did not help your child's tics but helped the OCD? Why do you think the TAMIFLU helped? Char..

My point exactly thanks for posting. Just because you failed the titers test does not mean you will be more susceptible to pneumonia. And just because you got the vaccine does not mean you won't get pneumonia. See the immune science is not well understood. Immunologists know this. Clinical presentation is critical with immune markers. Kind of sounds like the science of pandas also an immune disorder. These docs follow std protocols, some may be more out of the box thinkers, some may be more aggresive. Some have their hands tied by insurance comp requirements. name='kim' date='Oct 19 2009, 11:30 AM' post='41586'] as others have pointed out, antibody levels aren't the "end all" in effective protection. Titer levels might not indicate protection and low may not indicate that they won't respond to to natural infection adequately either. I see they speculate about increased efficacy when s pneumonia epitopes are conjugated with diptheria toxin, but no mention of the fact that alum is included in Prev. in this study. Curious These are a couple of excerpts from the study http://clinicaltrials.gov/archive/NCT00304382/2009_02_18 Streptococcus pneumoniae (pneumococcus) is the most common cause of pneumonia leading to hospitalization of adults. Resistance to infection is generally thought to be highly associated with antibody to the capsular polysaccharide (CPS). Most people who develop pneumococcal pneumonia lack antibody to the capsule of the infecting type. We have previously shown that some persons develop this infection despite the presence of antibody to the capsular polysaccharide of the infecting type. When such antibody is found, it tends to be poorly functional (DM Musher et al, J Infect Dis 182:158-167, 2000) in that it opsonizes pneumococci poorly for phagocytosis by human white blood cells in vitro, and protects mice poorly or not at all against challenge with the infecting organism. and During the past two years, with more active vaccination programs at our hospital, the proportion of pneumococcal pneumonia patients who have been vaccinated has increased to about 60%. Clearly, the vaccine has not provided a full degree of protection.