momto2pandas

Ds3 will be 4 two weeks from today, so he's considerably further along than your DD. From the little I've read, a lot of maturation of the immune system can happen between ages 2 and 4 on its own. The reason that we can't really put it off is that his sinus infection situation is really bad. Not only does he have bad symptoms, but he has really fallen off of his growth curve over the last several months and Dr. B suspects that it's due to the chronic infection and poor appetite. He's tired all of the time. So the decision is really a clinical one as well as by the numbers. Dr. B said that if he stops getting infections, we can stop the monthly IVIG and wait and see if he does better once he's back on his feet - even if his numbers are still low.

Ds3's total IgG was somewhere in the 400's (lower limit of normal was somewhere in mid 500's). His IgG3 was also low out of range (don't recall the number), and he only responded to 1 of the Prevnar serotypes vaccinated (I had miscounted the first time when I though it was 3). Normal response is at least 5 out of 7. He also had low (out of normal range) albumin/globulin due to too little IgG. And zero antibody response to strep (ASO or anti-dnase , despite clear infection, which Dr. B said was just because his immune system is too weak to launch detectable antibodies to it. Poor little guy. His little sinuses are so inflamed that he doesn't drain at all and we can barely understand his speech. We are now giving a lot of mucinex and saline spray and hot baths in addition to the steroids and antibiotics, since Dr. B says that we need to get him to drain. Tonight one little booger came out of all of my efforts on his nose, smaller than a petit pea, and I was overjoyed! A drained sinus starts with a single booger! May he have many more in the coming days... Ds6's total IgG was in the low-normal range. His IgG3 was low out of range (don't recall the exact number, but it was substantially below normal). He responded to 3 out of the 7 Prevnar serotypes vaccinated, though most of those were not great responses (just over the border). He also had no ASO response to strep, though he did have a very high anti-dnase b, so at least his immune system was doing something with it. An immune complex is basically a great big glob of immune cells + antigens, that can get lodged in unfortunate places (like your joints and also your organs) and cause inflammation and tissue damage. I do have some cartilage damage in my shoulder (interestingly only the left side, same side where I tend to get the swollen lymph node), but did not know that it was from this. I also was diagnosed with kidney damage at some point (not bad enough to have consequences, but there on urine tests) that I was told was probably some sort of residual effect of anorexia nervosa, but now I have to wonder since this is also caused by immune complex disease. I don't think this is a routine part of PANDAS. I asked Dr. B if he would take into account my immune complex disease is considering my kids' treatment (particularly for ds6, for whom the plan is NOT monthly treatment), and he basically said no, they were too young to be worrying yet about whether that could happen down the road. Who knows if they will encounter the triggers for it.

Hi there, Don't give up hope! I am an adult with PANDAS, and I believe (and have experienced) that it can be managed. You might want to take a look at my old post from early Feb of 2010 with the "things I had learned" and try some of those. I particularly recommend the right birth control pill (I took Yasmin, I think it's called), and the right high-EPA fish oil at high doses (I use omegabrites). Make sure that your thyroid is ok and that you are taking enough iron. I think that you are in your early 20's? My early 20's were tough, but not long after that I managed to get symptom free for several years at a time. And the "episodes" in between were really NOTHING compared to what my youth entailed, couple of days of depression/anxiety here and there, nothing that prevented me from getting a PhD, working, dating, marrying, parenting, traveling, etc.... All that having been said, I found out recently that I do have long-standing immune issues, so I would recommend going to see a good immunologist and getting a full evaluation. I wish I had done that 20, 30, 40 years ago! I saw Dr. B earlier this week and he is treating me now, though he did say specifically that his treatment is "not really for PANDAS" for me - he's treating me more as an immunology patient with PANDAS syptoms as relatively minor parts of the complex (currently minor, that is - over my lifetime they have been the most devastating). I am guessing that he would take on adult PANDAS though. Remember that Dr. K is a pediatrician. Dr. B is accustomed to treating adults in his practice. PM me if there is anything I can do for you!

Hi all, Just wanted to post an update. We saw Dr. B on Monday, and he wants all three of us to have IVIG for our immune conditions (PANDAS irrelevant to the decision as it turns out.) Ds3 has quite bad CVID at this point - worse on the last round of testing than on our February tests - and Dr. B feels confident that he will need monthly IVIG for quite some time if not indefinitely. First treatment high dose, then lowering. I haven't yet broken it to the little guy that he's going to have to go through this every month. I just can't picture it... Ds6 has IgG subclass and specific antibody deficiency. Dr. B thinks he may be able to get away with one high-dose treatment for now to help get rid of his raging strep...and then wait and see. I have specific antibody deficiency and "immune complex disease" (news to me), and will be treated monthly for the latter. I'm trying to adjust to that idea... I never knew that these joint pains I get when infected with strep, the old drug-induced lupus I had years ago, misc other stuff that never really affected my life, all meant that I had immune complex disease, but Dr. B put it all together and wants to keep a damper on it. When I looked it up online, one of the first things it mentioned was that it happens sometimes in people who have had histories of chronic malaria, which I had for years (had recurrent episodes after my first big episode), but which I hadn't given much thought to for a while. We all have strep, including DH, who is now (for the first time during this whole thing) on antibiotics. And now the kids and I are all on a few weeks of steroids (for massive sinus inflammation) and antibiotics. The kids look (and act) TERRIBLE on the steroids (only 2 doses so far); it's scary. But I always have a terrible first 2 days on them before it turns around so nicely, so I'm going with it for now... Interestingly, this time around on the pred I am very tired, but not all that moody. We are still back east, staying with my godparents and waiting for insurance approval. We got insurance approval right away for ds3 given his condition and acute infection, but are waiting on ds6 and myself. Hubby will fly out pronto once we know the timing. Hoping to start treatment tomorrow but it could be next week. I am quite nervous not only about getting all three of us through the procedure itself at once (esp since I may be on my own until DH gets here!) but mostly about what I've seen called the "turning back of the pages". We have really been sick with this Strep since Oct, but we have all been doing reasonably well PANDAS-wise compared to what we've seen in the past, and if I have to turn back 40 years' worth of pages, I'm looking at a rough ride ahead....and all the while, I'll be taking care of 2 little PANDAS and whatever reactions they have. I have never needed disability except for the usual post-partum few weeks, but I am looking into applying for it and planning to take a couple of weeks off of work. I just can't see how I can plan to go back to work on Monday (even part time) and take on all of that responsibility right away. I'm finding it hard enough to get anything done this week on the steroids alone.... My DH may be in for a roller coaster of a few weeks ahead, and then maybe a brand new and improved family! How surreal is that!

I don't think it's generally necessary to remove everything to get the Cunningham test done, but I suspected that we were getting a ton of benefit from our regime (just based on my experience with/without it), so I removed it to get a better sense for what we were "really" like in the absence of it. I have to admit, though, that letting the kids "crash" in this way, even for a few days, was kind of nighmarish and I almost bailed on it. I cannot imagine life if we really had to live with all 3 of us in that state. In the paper that Cunningham's lab showed me, the very highest PANDAS child had a CamK of nearly 200 - so about a tie with my ds3. Above that threshold, everyone else had Sydenham's Chorea. So both of my boys and I are in the upper limit PANDAS/low-mid SC range.

Yes, I have PANDAS. It was VERY bad as a kid (2 years in hospitals - anorexia nervosa/OCD, bipolar, bad tics, etc.) but it doesn't amount to that much these days. I still feel it when I have an infection, but mostly I feel wiped out and brain foggy when that happens now, with some mild general anxiety/depression. My children's symptoms are also not that bad. In fact, the main reason I got the Cam's was that I wasn't even sure about ds3's diagnosis since his symptoms are so mild and seem to be mostly speech-related. I know that there probably isn't an exact correlation between symptoms and Cam, but it's still disturbing to me that both of my kids have Cam's that are worse than mine given how bad I got by the time I was in my early teens. Luckily, there are now ways to help them that weren't available to me. I'm guessing it may be our supplements that help so much, most likely the fish oil. I removed everything before we got the tests done to get a real baseline and the kids really crashed when I did so.

I just got our Cam Kinase tests from Cunningham's lab: me: 182 ds6: 187 ds3: 199 Yikes!!! Kind of shocked to see that we are at the very top of the PANDAS range. In fact, ds3 ties with the very top PANDAS point in the Cunningham paper. We match up almost better with the SC group. Also got the Strep results. DH's anti-dnase B is 170, twice the upper limit of normal! Glad we found that out. Ds6 is 680, 4 times the ULN. Haven't gotten mine yet. And their immune tests were repeated and seem to be getting worse...good thing we're headed for IVIG next week, though I'm not sure if we can do it given that we seem to have Strep running around currently and aren't even on antibiotics at this point.

My ds6 works at the 6th grade level in all major subjects and pretty much works independently within a regular 1st grade classroom, though they do have the special education teacher work with him 1-on-1 a few times per week to introduce new concepts, etc. He has always been about 4-5 years ahead of grade level, reading before he was 2 years old, etc. Sounds weird to say but it's actually true. My ds3 works at around the K-1st grade level. Not quite as advanced as his brother but always way ahead of his peers. I think there is something weird about the math skills stuff. Ds6 is one of those guys who does long multiplication in his head, and I have always been really gifted in math too. In college I took all of these advanced math and physics classes as my "guts" because I never needed to work at them. On the flip side, though I also learned to read very early, I have been a very slow reader as an adult - it takes me forever to get through written material. Not sure what that's about, but literature classes always took a lot out of me time-wise.

I would strongly suspect allergies. We had just the opposite experience from you a couple of week-ends ago. We went camping and fishing as a family, on a Cub Scout outing. Just a few days before, we had found out that Ds6 has allergies to all kinds of deciduous trees that were blooming that week. I had been thinking that it was lucky for us that we live at in the mountains where we have mostly conifers (which none of us are allergic to) and limited exposure to all of those allergenic trees...but when we got to the campground, it was covered in the trees that he's allergic to. We all did wind up having a good time, but the allergy situation was obvious and a real drag. I'm sure it didn't help that we ended up making allowances on the food allergies, too, so that he wouldn't be the only kid who didn't get to eat a s'more, etc. Things improved dramatically when we got home again. I can imagine that if your son has allergies to indoor allergens, camping and fishing for 3 days might yield dramatic improvement. Related to this, we were perplexed for a while about why ds6 always went to school it a pretty good mood, and came off of the bus looking as sour as could be. We found out that he was allergic to peanuts, corn, and soy (in addition to milk, which we had known about) - and guess what we'd been putting in his lunch every day? Peanut butter sandwich, corn puffs, and soymilk. Removing those helped enormously - wow, what a difference. But I have to admit that before we made the lunch connection, I did take it personally that he seemed to get into a bad mood right as it started to be time to come home. Over my entire life with PANDAX and allergies, I have noticed less symptoms when I'm in a new environment. I think that's a lot of what has driven my travel bug! Each time I go abroad (which I'm addicted to) or move from one coast to another (which I have done several times), I feel this incredible sense of well-being, and it can last a couple of years. My doctors say it takes about that long to develop new environmental allergies. One even suggested to me that we just plan on moving every 3 years!

I think you hit the nail on the head with your last paragraph... it is hard to make big decisions for little people, but then if you wait until they're big people to do anything, you might miss a very positive opportunity.

Kim - This is really interesting stuff and I think that you're on to something here. I wonder why, from an evolutionary point of view, a switch would be made to decreased galactosylation of IgG with repeat challenge by the same antigen. Is the proinflammatory response thus generated somehow adaptive? It's interesting to me that one of the articles calls TB a "chronic inflammatory disease". Particularly interesting to me given that I was found to have TB while I had anorexia nervosa and the AN cleared when the TB was treated. I never bothered to research much about TB (when I had it I was so young - and it was pre-internet!). Vaccines have obviously done the world a ton of good, but it seems like that science still needs to evolve some more. Or, it could have little to do with vaccinations, and have more to do with the fact that it in our highly mobile and population-dense culture, we get too much exposure to the same bugs over and over again. If it were just that, though, you would expect to see more inflammatory diseases in very population dense and infection-prone cultures like you see in e.g. India, and instead, inflammatory diseases seem mostly be to a plague of the "developed" world.

The side effects that are listed are things like the very small chance of a reaction to the IVIG, infection at the site, stuff like that -- but the effects that worry me more are the anecdotal reports of things getting stirred up and made worse, weird old symptoms showing up, etc. It may well be for the best in the long run, but I'm not looking forward to a roller coaster ride and all of the doubts that I'm sure come along with that.... Well, what exactly ARE the risk associated with IVIG? I know they are mentioned over and over, but I don't know exactly what they are! Anyone? As for going through with it or not, that is a tough question. For us, there are no other immune problems, and antibiotics seem to be taking care of most of it, so we are waiting. Dr. Latimer says some patients do make a recovery without a need for IVIG. She does not seem our son needs it at this point, so we are going with that. But if you trust your doctor, and he believes they need it, then I would do it. I am just thinking of so many parents in this forum who wish they had know about PANDAS and gotten the right treatment years ago when their kids were little.

Fascinating. I wonder if the loss of blood does have some immunomodulating effect. I know that "bloodletting" used to be considered medicinal before it came to be considered barbaric. I looked it up on wikipedia. http://en.wikipedia.org/wiki/Bloodletting It's a practice that was used for 2000 years - routinely used before surgery to "prevent inflammation." It also mentions that removal of blood has a sedative effect. Very interesting. Maybe I can get the kids interested in a vampire bat for a pet No-one else has seen this? Or, maybe as EAMom suggests, it could be more of a post-adrenaline rush kind of thing? Who knows, but it's very obvious in my kids. I was just having this conversation the other day with my brother-in-law. Our daughters symptoms improved for about 4 days after she had blood drawn for the strep titers and Cunningham tests. He compared it to leech therapy as well. She also was having a lot of bloody noses, which, strangely enough have stopped since we started abx on Tuesday. Hmmmmmm.

I think that I stand where you do with vaccines. When my ds6 was 4, he was pretty much like my ds-almost4 is now. Ds6's pediatrician had deferred many vaccines for a long time due to fears of reactions since his immune system was nutty even at the time (behavioral+physical reactions to rotating door of allergens, illnesses, etc.)...but when we registered for kindergarten, he had to catch up with all of them at once... and shortly afterwards we saw actual OCD in him for the first time, and he was diagnosed with PANDAS. I've already made it clear to the pediatrician that ds3 is done with vaccinations, unless someone can really convince me that it will be safe for him. I don't know what we'll have to do when kindergarten registration comes around in a year, but I'll fight that battle when it comes. Unfortunately, with a weak immune system and proneness to getting sick, being unvaccinated can be kind of scary, too - but he's not launching an immune response to some of them anyway so the cost-benefit ratio doesn't seem so good to me.

Can't believe it, but it looks like my kids will be getting IVIG in three weeks, pending repeat bloodwork. Based on their immune results (below normal range) and history of recurrent/chronic infections, plus PANDAS (and lots of other autommune stuff in ds6), Dr. B feels that there is no reason to wait. I can't get used to the idea. Particularly for ds3, his PANDAS is so mild that I can't even say that I'm absolutely 100% sure about it, and even ds6 is pretty well off as far as PANDAS cases go. Even their infections - though persistent and recurrent - have never caused hospitalization or even much time out of school. Dr. B feels that we should go ahead BEFORE they get sicker, and I guess it makes sense given the labs, but somehow I always thought IVIG was VERY far in the future if things progressed a LOT, and I feel strange about it in kids that basically seem quite normal and healthy. I keep switching between feeling haunted by the thought that we're being too "experimental" on the kids -- and feeling grateful that maybe they're actually going to get "fixed" before they get "broken" in any way that will leave real scars (what a contrast to my own childhood...). People like my Mom keep questioning whether it's really necessary (funny that it's she, of all people, given that she experienced what happened in my untreated childhood!), and I watch the kids playing happily with friends, doing well in school, and looking pretty healthy, and it's hard not to feel like I'm a nut for taking them for IVIG. Does anyone know if PANDAS in immune deficiency ever gets better withOUT IVIG? Or if immune deficiency ever gets better on its own withOUT IVIG? I keep worrying about the risks of treating, but my husband argues that there is more risk in NOT treating... I just wish that I KNEW that that was the case. We're getting CamKinase on them and hope to have the results before proceeding. I think if I see in black and white that their CamK's look PANDAS (and I'm quite sure that they will), I will feel somewhat better about the whole thing. Luckily Dr. B expects insurance to pay so at least financial issues don't weigh in much one way or another. Guess I'm just looking to vent.... and it's all too much to explain to my "real life" friends.

Thank you for sharing! I am so glad for Allie and for you. It's always so great, so inspiring, to hear of the breakthroughs after all of the trials and errors.

This is going to sound very strange, but has anyone else noticed DRAMATIC mood improvements after blood has been taken from their kids for testing? The first time it happened, I thought it was a strange coincidence - maybe they were tense about the tests, and relieved once it was over....? But at this point, each of my kids has had a BUNCH (maximum allowed amount for weight) of blood taken 4 times, and they don't get particularly tense about it....but afterwards, they are in unbelievably great moods, totally free of tics, etc. Even though they tend to be at their worst when the blood is taken (hence the testing...), they become 100% great within 5 minutes or so afterwards and for the rest of the day. I can't imagine what this is - maybe "fresh" blood being released? Maybe relief of blood pressure in inflamed brain? Can't think of any good reason that this makes sense, and yet there it is... CAUTION: Do not try this at home!

Hence my prediction that eventually TNF-alpha inhibitors will be used for these disorders...

I just got an email from Dr. Cunningham on this very topic. 2 kids is $800. I have the kit for the Cunningham test, we just haven't had the funds to do it yet. I guess testing them both would make sense, then I would know if I'm really seeing things with him or if I'm so paranoid I'm imagining them. I will email them again tomorrow to see if I could get a reduction in price if I do them both at the same time. Certainly doesn't hurt to ask!

My ds3 stammers seriously when he exacerbates. In fact, it's his most pronounced symptom (often his only one) and was the first one we noticed, when he was 2. His speech therapist can see it clearly from week to week. My ds6 has word repeating issues when he exacerbates. This can be quite severe but it doesn't really sound like a speech issue as much as a thought-process issue (like constant brain hiccups). Not sure if that distinction makes sense.

I actually saw Dr. T reference it, but honestly, I have also had it associated with issues in my own experience and so have other family members.

Hi Melanie, I'm so sorry you and Danny are having such a frustrating time. Hang in there! Don't give up hope! Does he respond to steroids? I can't remember - does he have other inflammatory conditions? There are other approaches to treating chronic inflammatory conditions - look at lupus, rheumatoid arthritis, psoriasis, and so many others. Typically not many go down that route because typically the other stuff helps, at least for now, but maybe you will need to go down more of that route for Danny. Some of the other drugs may seem more "serious", but in my opinion, PANDAS can be a serious condition requiring serious drugs if other routes have failed. Does he have a PANDAS doctor? Has he been tested for Epstein Barr? That's a virus that seems to set off PANDAS in vulnerables, and it wouldn't be helped by antibiotics.

Thanks everyone! This is reassuring. Many years ago, when I moved from NY to CA, I remember that I couldn't get my thyroid medicine right away because they were unable to fill an out of state prescription. I guess that must have either been some strange thing that I don't recall, or else rules have changed since then. I agree that if I were a physician, I would want to have seen a patient at least once before prescribing, for medicolegal reasons.

Your last question is an interesting one. I made up a big Excel file for all of us so that I could actually import it all into a statistical analysis package and look at the patterns! Have only been doing it for a few weeks so far, so nothing much to report yet. It's interesting, though. I just picked up some of our medical records for the last 4 years and filed everything by date instead of by person, and it was striking. I remembered things that I hadn't remembered in a long time. For example, I had this really annoying eye twitch that lasted a few weeks a few years ago, and I had no idea what it was all about. It had never happened before, but all of a sudden my eye was twitching like crazy. Interestingly, it was happening exactly when both of my boys and my husband all had Strep! I hadn't put that together at the time. Lots of other "aha" moments in there as well.

Don't you need to be licensed in a state to prescribe there? How are those of you who have out of state doctors getting your prescriptions? I've been wondering about this for a while. Do you need to have in-state contacts to mail them to you?