Iowamom

Buster- Your post gives me hope! Our 10 yo son completed IVIG with Dr. K on Sat. He is of particular interest to Dr. K because he (& we) believe he was a very early onset PANDAS that has been mis-dx'd for years. Anyway, today was AWFUL. We had had a period of relative calm for three weeks. Yesterday, he turned on a dime late afternoon. I unpacked a knife from his backpack he was taking to school tomorrow. This is not my boy. His CaM was 184%---in Late JUly. Had been on Zith. This last year since he has been dx'd has been one protracted exacerbation with a few short periods of calm. It appears our period of calm is over, for the moment. I sent in blood the day before the IVIG and will do a post one as well. Dr. K believes we had the IVIG soon enough to help him. Dawn

I believe IVIG is TYPICALLY done by Immunologists but that does not mean others physician's can not write the orders. Our dd receives her IVIG at her allergy doctor's office. Many of the illnesses "approved" for IVIG are either autoimmune illnesses or primary immune illnesses. Many hospitals also have an in house infusion center where IVIG is completed. I would start with having the Cunningham blood word completed and then have your Ped run a complete Immunological Panel as well. The immuno panel should include blood work for IgG, IgG subclasses, IgM, IgA and the Pneumococcal, Diptheria & Tetanus Titers. Many of these kids are failing some portion of the Immunological panel which may mean a diagnose of a Primary Immune Deficiency Disease. With a PIDD dx insurance would likely cover the IVIG. Bubba's mom- We are still in Chicago, having finished up our 10 yo son's IVIG with Dr. K. Our son is a bit over 100 lbs. We had to hand over a $10,700 bank check to Oak Brook Med & Surgical Centre. We were told $112 per gram/IVIG . Dr. K uses 1.5 g per Kg of body weight. Do a little math to find the total number of grams needed. Multiply by the $112. We were told 1800 for the room (900/day) There must have been some other fees to get up to $10,700! Dr. K's fee was $2400 and there was $350 for the office visit the day before the IVIG. Our Iowa BCBS did pre-auth us. They did file for us so we are just waiting to get reimbursed. We are out of network so at least 30% is the amount we will be left with. It's all in the coding. Oh, how I can empathize with the rages! I pray that as our son heals, so can our family. How old is your son?? We and Dr K are convinced that the PANDAS started at a very young age for him (and us). Get help as soon as you can. We tried for years, only to have alphabet diagnoses attached to him. It will not get better, only more dangerous/scary. Give Dr. K a call Monday. Best wishes. Dawn

Deanna- I'll jump in with my thoughts on the penicillin question. Just thoughts. First, how long has Anthony been dx'd? Is his a case that has NOT gone on forever, misdiagnosed as other disorders? The first drug of choice is penicillin, because of its narrow spectrum and because it will do the trick on the strep--most of the time. She may be wanting to give the penicillin a fair shake before pulling out bigger guns. Many on this forum have had strep cases that haven't "behaved" and haven't responded to penicillin because our bodies aren't perfect test tube environments. (intracellular strep, biofilms, virulent serotypes, just plain stealthy strep...) Some of these cases have gone un/misdx'd for years (like my son's), and after giving penicillin more than a fair shake and evidenced by behavior and titers that keep bouncing up and down, move on to broader antibiotics. Another question: Have tics been a main symptom for your son? By the time Evan was dx'd he had a some of about everything, with tics being less of an issue. They ramped up the latest and disappeared first. I've read where others have had the" last to occur, first to go" thing happen with symptoms. Just some things to think about, or help you ask good questions when Dr. L calls. If penicillin (even Bicillin injections) would have worked, we wouldn't have switched to azith. I am guessing by reading the forum that many of the cases are pretty tough cases and not more easily brought under control. I am not sure where yours falls on the "PANDAS spectrum" (if there is such a thing). Just my thoughts. Dawn

Peglem, I feel for you! Keeping an older child and yourself safe during rages or the like is the pits. Our 10 year old 100# son is a big kid (tall, too). It gets downright dangerous. I accidently responded to someone else, thinking they had the older PANDAS child. Yes, I will keep in touch. Your case sounds sooooo similar to ours. An earlier post mentioned a type of glutamate inhibitor. Our son is taking Namenda, which is a drug for Alzheimers patients. It too works on glutamate, (the most?) abundant neurotransmitter in the brain. The psychiatrists where we go have been prescribing it for 5-ish years for PDD traits/autism like behavior with incredible results. It honestly has been the only drug that has good positive effects. More focus, less perseverative thinking, will verbalize his concerns instead of holding them in and then explode. We had to go on Risperdal. Too dangerous and destructive. Our IVIG is Oct 2/3. Hopefully, we can ween him off these in time. I'd prefer to ditch the Risperdal first. Maybe he will always need a little medication. Just don't know what "layers" will remain--if any--post-IVIG since he has had it so long. We are praying for positive results. If you want to get in touch with me by email--that would be great. Let me know. Dawn

I will be VERY interested in IVIG outcome for you. My daughter has almost exactly the same history and at this point we don't know how much of her difficulties are PANDAS related and how much, if any, is something else. She went undiagnosed (for PANDAS anyway) for so long and problems started so young. Risperdal worked for a few months, then seemed to make things worse. Elizabeth, I'd like to keep in touch! Risperdal--can't say it was working much today. He went from totally composed to flipping out, to bolting and standing in the middle of the street as vehicles (and buses) came toward him!! Ugh!!!!!! We see the kiddie psych tomorrow for a follow-up. Keep trying to get a hold of Dr K. It's always been difficult getting a hold of this guy. I want a date! Our son is the most normal, compassionate, creative, neat kid when he is "of sound mind". I have ALWAYS said, like the nursery rhyme: When he is good, he is very, very, good. And when he is bad, he is horrid!! No other way that best descibes him. How old is your daughter? I'm not opposed to email, if that would be easier. Dawn

I'll throw in my two cents on the long term prophylactic abx. I can't remember where I read this, but it makes sense. If you have eradicated the strep (and other bacteria) and then are put on the pabx and stay on them, there are no leftover bacteria that can start building up a resistance to the abx. I had to think on that a bit, but it does make sense. The bigger problem, IMO, is people not finishing a course of antibiotics, or skipping doses. Leftover bugs. Not a good deal. There aren't any leftover bugs if you're on pabx. I don't know if this would pass microbiology muster, but it's worth a thought. Dawn

Elizabeth, Our 10 1/2 yo son's case of PANDAS has been a journey to search for the missing puzzle piece. No explosive, night & day onset. Just a lifetime of alphabet diagnoses and attempts to treat the problems, only to get nowhere. He was dx'd with PANDAS in 11/08. At that time he was presenting with rages/tantrums/destructive/aggressive behavior, separation anxiety, labile emotions OCD-more in the perseverative thinking (stuck),tics, some choreiform mvt in fingers, regressive behaviors, very high titers--a little bit of everything! Migraines started at 3 1/2, repleat with the vomiting. (We think strep, now.) With his birth to present medical history in hand (lots of infections that presented like strep, but never a culture. Evan probably blew half his medicine out his mouth!), and with the knowledge that we distinctly remember starting to have "issues" with him by 21 mo, we believe that the PANDAS thing started a long time ago. Four docs have said PANDAS. Because he has had it so long the saw-tooth patterns of waxing & waning have been as if you stacked one pattern on top of another-pretty soon you don't have a clear pattern. Evan's mycoplasma pneumoniae IgG was very high. Can't remember the last time he had an illness that could have been caused by this bug. Dr. K says that so many of the kids he checks with the rage/aggression/destructiveness have this elevated, too. Whew--so to take a stab at your question, I believe what makes this a difficult case is it's "chronic nature, and that we don't know how much is strictly PANDAS. Also, the steroid burst did not give us "Ta-Da!" results. Too short, too much of a jolt to begin, too abrupt stop. He had about 2 1/2 good days out of the 5. I think Latimer's prednisone schedule would have been more helpful in Evan's case. He is currently on 250mg azith/day and Risperdal 1mg 2x/day. Every psych drug we have tried has failed. (Penicillin, even injections ,wouldn't eradicate the strep.) Risperdal has worked the best, but not all that well. About as well as Dr. K said it would. His CaM was 184%, but this was with him on azith. OK, a long answer to a short question. Fire away with more questions. There are alot of "holes" in the hx I just gave. Dawn

I had a similar thing happen when we switched to azith. In fact I remember asking the doc if she thought we could have a yeast overgrowth because of the behaviors. She wasn't inclined to think so. Things got better, but our son's is a "he's had undx'd PANDAS forever", and his behavior has been up and down again. Doing IVIG with dr. K. Waiting to hear the date. His comment to us was that it is hard to predict how these difficult cases will turn out with IVIG. We're praying. Hang in there with the azith. Dawn

After a stomach virus, immune system is weakened - more susceptible to other things like strep. Oil of oregano definitely better than oil of olive leaf. Really works to get rid of flu symptoms & helps get rid of strep (and viruses). (it's the most potent natural antibiotic, anti-fungal & anti-viral) I'd be careful about using too much advil on a regular basis. It is a good anti-inflammatory, but too much can cause undue stress on the kidneys. Also, it can be a little rough on the digestive system besides. We had issues with what I believe to be rebound headaches. They can occur with NSAIDS. Cutting back on the dose helped. Dawn

The infectious disease doc at the Children's Hospital in Des Moines, who initially dx'ed our son's PANDAS, will not go along with the IVIG so we returned to Dr. K. With our out-of-pocket met, our cost would be $0 if we stayed in Iowa. This is the only guy that anyone knows of in central Iowa who is treating PANDAS patients. Unfortunately, he's behind. Bent on penicillin ALWAYS working. He wouldn't even back down when our son's strep titers continued to rise and behaviors spiralled on Bicillin injections!!! After researching I begged azith from our GP. BCBS said that we could try going to Iowa City (Medical School) and if no one there could treat him, then going to Chicago wouldn't be considered out-of-network. I'm exhausted with all we have been through. Not about to attempt locate another doc only to waste more precious time and still end up in Chicago. It's all in the coding. Obviously, PANDAS is explicitly rejected. When I saw the pre-auth form, I thought there was going to be no way Dr. K was going to get Evan's dx to work with the diseases listed. Hoping others get some insurance coverage, too. Dawn

Super-de-duper, Melanie!! We should be off to Chicago for (insurance approved!) IVIG in the next month. Waiting for them to find a date for us. Dawn

Nancy- New to the forum. I immediately thought of OCD. What we have learned about our son is that the OCD symptoms are not the classic kind most of us probably use to think was of as OCD. Perseverative thinking/perseveration is more of what we deal with our 10 yo son. Best wishes. Dawn

Oh, please understand that I am no way encouraging you to do the vaccine. My daughter was able to get insurance approval for IVIG based on her titer results but she was NOT vaccinated with the Pneumovax. She received Prevnar from age 2-3 and her immuno did not feel she needed to be revaxed (she's now 7). So, I'm wondering if you can find a doctor to dx him with CVID based on those original results and try for insurance approval. Hi all! We just rec'd word that we are approved through BCBS (Iowa) for IVIG with Dr. K. Waitng to hear a date. This was a surprise. Unfortunately, we have had to go out of network, so when everything is said & done, we are guessing 50% will be what we will end up paying. Every code he gave us flew. 279.04 autoimmune disease NOS- I am pretty sure's the dx. My husband had all the bazillion codes! Hoping others get this good news, too. Dawn

Melanie- I'll reply to the what medicines work question. Our experience and the experience of many others is that it is difficult to find a drug that helps our PANDAS kids. We have had our son on Abilify--quit working. Bombed. SeroquelXR--bombed. Namenda --saw some positive things with attention/eye contact, which weren't big issues in the scope of things. Dr. K has told us that anti-psychs don't generally work. We are currently on Risperdal (1mg 2x/day). We asked about Risperdal and if it tended to backfire in PANDAS kids. His answer was: "I haven't seen it backfire, and I've yet to see it work." Our experience in the 2 months our son has been on it has been similar to yours. SSRI's backfired on us as well. This is pretty common, too. Too much dopamine and too little seratonin, that gets depleted even more with the drugs, is how I've understood it. An antibody of some sort may be signaling the neuronal cells, activating CaM Kinase II within the cell, signaling it to release Dopamine, thereby producing PANDAS symptoms, per Dr. C. Our son has a difficult case of PANDAS due to the number of years he went undiagnosed. We are going to give IVIG a shot. It is being used in soooo many different conditions (off label) with good results. We know we have no guarantees, but we are going to try. Maybe I didn't help, but I thought I'd put in my two cents. I've read the forum for a while and am new to posting. Dawn Thanks dawn How old is your chilld ? Sounds like my story Melanie- I'm new to this posting stuff--not sure if I am getting this typed in the correct location! I missed that your boy had just had IVIG. My response was as if you hadn't. Sorry. Hang onto hope. I've read so many cases that take a while to turn around, but then do. Hey, I'd be thinking the same thing, and probably will when we get it done soon. We were to get a date, but Dr. K's office didn't call with one by day's end. rats! Our boy, Evan, is 10 1/2. He has been what you would call, an "alphabet kid", like so many PANDAS kids. Let's see. DD, ODD,PDD-NOS, Mood disorder, anxiety, on the very high end of the autism spectrum, not on the spectrum!... A PANDAS dx was suspected in the fall of 08 after a stay in the behavioral/psych unit. We had had significant counseling prior. All along his way, his problems had been pretty much boiled down to parenting. After the dx, we had a winter/spring from ##^+% trying to get rid of the strep. The doc was insistent that Pen. would work. Even switching to Bicillin injections. After his strep titers continued to soar and his behavior was terribly dangerous & destructive I begged azith from our GP. I got it and it helped for a while and then peaked and, well we are planning on IVIG. We are convinced that he has had this from before he was 2. His baby records are replete with infections that present as strep. Never a strep test. Sometimes amox., most of which he blew across the room. He had migraines as a little guy. I really wonder if these weren't really strep. His IgG for mycoplasma pneumoniae was very elevated in July. Dr. K says he sees alot of PANDAS kids with rage/aggression have this elevated. I can't remember the last time he had an URI that could have been caused by the m. pneumoniae bacteria. His CaM was 184%. in August. His other autoantibodies were OK (anti tubulin just on the line). THe blood was drawn after he had been on azith for about 2 months after most of the tics/choreiform mvt in his fingers had subsided. The thing that would cause a 3 year-old to stab a knife into the screen door out of frustration, has to be the same thing that would drive a 10 year-old to take a butter knife to the top of my glasstop stove (it lost!) Just a sample. Oh, this probably sounds so disjointed. My apologies. I have seen our boy when he is a different kid. Evan is really very tenderhearted, funny, and incredibly imaginative & creative. Like everyone else, we want our true child. Hang in there & prayers from the Heartland! Dawn

Hello. I have been watching posts for some time, trying to figure things out right along with everyone else. It is my understanding from an email I rec'd back from Dr. C that the Cam Kinase II is INSIDE the neurons--not coming from other parts of the body. It is in other parts of the body, but she explicitly stated that what we are talking about in PANDAS is inside the cell, not circulating outside of it. It is activated by some antibody (not a strep antibody) and causing the PANDAS symptoms. I would guess that these are what are crossing the BBB, not the Cam. Obviously, CaM Kinase hangs around awhile. Since it causes the release of dopamine, I would think this is why some of these PANDAS symptoms want to persist in so many kids. I'm only trying to figure out the puzzle like everyone else, so I could be all wet. What I am not wet about is the fact that Dr. C stated that the CaM is inside the neuron. Praying for a major breakthrough for our kids! Dawn

Melanie- I'll reply to the what medicines work question. Our experience and the experience of many others is that it is difficult to find a drug that helps our PANDAS kids. We have had our son on Abilify--quit working. Bombed. SeroquelXR--bombed. Namenda --saw some positive things with attention/eye contact, which weren't big issues in the scope of things. Dr. K has told us that anti-psychs don't generally work. We are currently on Risperdal (1mg 2x/day). We asked about Risperdal and if it tended to backfire in PANDAS kids. His answer was: "I haven't seen it backfire, and I've yet to see it work." Our experience in the 2 months our son has been on it has been similar to yours. SSRI's backfired on us as well. This is pretty common, too. Too much dopamine and too little seratonin, that gets depleted even more with the drugs, is how I've understood it. An antibody of some sort may be signaling the neuronal cells, activating CaM Kinase II within the cell, signaling it to release Dopamine, thereby producing PANDAS symptoms, per Dr. C. Our son has a difficult case of PANDAS due to the number of years he went undiagnosed. We are going to give IVIG a shot. It is being used in soooo many different conditions (off label) with good results. We know we have no guarantees, but we are going to try. Maybe I didn't help, but I thought I'd put in my two cents. I've read the forum for a while and am new to posting. Dawn

We are in the process of arranging for the IVIG. It seems each time we have gotten ready to contact Dr. K he has been flying around the globe! We put a call in today to make sure he received some earlier fax info and my husband got the answering service. bummer. We are trying. Evan's case is not an overnight onset story. When we look back we see the waxing and waning, but even that was difficult to spot because, as the psychiatrist agreed, he probably hasn't gotten over the saw-tooth pattern before he was hit with another exacerbation. Like multiple saw-tooth pattern stacked on top of one another. Pretty soon it doesn't look like much of a pattern. Dr. K said these difficult cases are hard to predict the IVIG outcome, but we feel we must try. Has anyone else that have had high mycoplasma pneumoniae IgG titers respond well to IVIG? Dr. K says his observation has been that kids with these titers elevated have the Katy-bar-the Door rages. Evan's was very elevated and I can not recall the last time he had an URI that presented like this little bug. He said it has only been his observation. Googling m. pneumoniae and you will see the research linking it to autoimmune reactions in the brain, brain inflammation, etc. Evan's strep titers and behavior continued to skyrocket (1500/2700!)even on the penicillin injections. I couldn't get the disease specialist to budge off the pencillin."It will work!" Excuse me, come live with us and you will see it is not working, doc! Heck, look at the lab numbers!! I finally begged Zithromax from our GP this last May, and we got the strep arrested. We are taking 250mg a day now. We saw some very positive improvement on the Zith for a while. The choreiform mvt that he had in his fingers is gone. The perseverative (stuck) thinking and anxiety isn't quite as bad, the rages, destructive/aggressive behavior is being helped only a little by Risperdal (1mg/2x day). Separation anxiety has been an issue with the start of school, but I pray we are on the right road now. Every other psych drug we tried failed. Risperdal has only taken the edge off, and I hate it because of the weight he has gained. But weight gain or spade to the house; hammer thrown tomahawk to my head/more house damage. The tics he had were noticeable, but not bothersome to others. Those subsided several months ago, but with what I saw him doing tonight repeatedly...ugh. I have seen the real tenderhearted son enough to know: this ain't the real Evan. We are praying that our son will recover. OK, I've rambled. BTW, our son is 10 1/2. It's been a journey. Dawn

Hello from Iowa! I posted some info I rec'd from Dr. Cunningham when I asked her some questions through email. It is in the topic "How do we interpret these results from Dr. Cunningham". Just thought I would pass this along. Dawn

Hello from Iowa! There are so many parents from the coasts. Just thought I would check in from the midwest for the first time. I will share more about our PANDAS saga in another post. It's a bit different, yet so much the same. We have lived it for as many years as PANDAS has been an acronym, but have danced around a true dx (alphabet kid) until last October. I have been in contact with Diana P. and we have been to Dr. K., and have been reading the forum frequently. I'll share more later. I thought I would throw in some explanations right from questions I posed in emails to Dr. Cunningham. I hope this is OK. In the first set I asked some questions and then she used my email and answered them. The other must have been an answer to some other question I had. I hope this is helpful. -Dawn Is excessive CaM in and of itself hard on the brain/body?? The CaM is elevated inside neuronal cells and is not outside the cells. We think that the antibodies trigger it. Will IVIG take that out or will getting the strep antibodies out of the blood stop that. IVIG is known to help but it's exact mechanism is not known. It provides immunoglobulins that may prevent infections which could help indirectly to prevent exacerbations. It may have other mechanisms. Do the antineuronal antibodies fall as the strep titers recede because the CaM goes down? This may happen but the anti-streptolysin 0 titers or anti-DNAse B titers could drop and the antibodies inducing CaM may stay elevated. They are not the same antibodies. That there are any antineuronal antibodies is not good? High CaM, low titers---now what do we have or should do. The high CaM indicates that your child may have antibodies that signal neuronal cells to release dopamine and cause the PANDAS. the other antibodies are not highly elevated and are within normal levels as you will see when you get the hard copy in the mail. We are trying to study the symptoms and correlate with the test results. I truly think he has battled this for years. Does his pattern (labs) match other kids that may have gone undx'ed for years? Children with these diseases have one of them at least elevated. It is good that the anti-neural antibody titers are relatively low and are in the normal range Thanks for being patient with us parents out here. Dawn The anti-neural antibodies are tested directly in the enzyme linked immunosorbent assay or ELISA which tests directly for antibodies against neural antigens lysoganglioside, D1/D2 receptors, and tubulin. We are looking at the correlation of these antibodies with the symptoms. In the Calcium-Calmodulin dependent protein kinase II assay, we are performing the test as follows: the childs serum antibody is placed onto neuronal cells in culture in the lab. Then we take the cells and look to see if the CaM kinase is elevated in the cells over the basal level normally present in the neuronal cells. The test result indicates that the serum (antibody) triggered the CaM kinase activation above the basal level. Basal level is set at 100%. We send the graph that has been published to indicate where your child's results are located. Your child's result was high at 184% which does fall in the PANDAS range on the graph that we sent or you will receive next week. I hope this helps.