airial95

My 7 year old is what I would consider a mild case of PANDAS. Typically - all of her symptoms would resolve within 2 weeks of a 30 day course of antibiotics. We have not kept her on abx between infections and not longer than 30 days. She takes cefdinir because of a penicillin allergy. My son - that's another story. But yes, it is possible to see good results with a short run of abx, but like pr40 said, most of those folks aren't around here. We're here because my son was dx first, and he is a pretty severe case (chronic, non-stop strep). One thing to keep in mind, once a child has PANDAS, they will likely react EVERY TIME they get strep. Even if they completely recover between infections, like my daughter. Some kids, even if their first flare is strep triggered, will have a reaction anytime the immune system mounts a response to any bacterial or viral infection. My kids are strictly strep triggers, but it's something to watch out for. Also, since they react with each multiple infection, symptoms can change, and worsen over time. My daughter had her first PANDAS flare in Spring 2011, but wasn't dx until September 2011 (the delay wasn't b/c of untreated infections - she was getting 30 days standard abx every time her brother got strep and she also tested +, even though she's asymptomatic to strep. It took 3 consecutive infections over the course of that summer to fully correlate her symptoms, which were milder than my sons, and the strep infections. Part of the problem was that she clears fairly quickly once abx is started, and compared to my son - her symptoms are milder so easily missed when also dealing with his flare). Since her initial onset, she has gotten strep 5-6 times, each time she has followed the same pattern - 30 days of abx and fine. Until now. She tested positive for strep 3 weeks ago, her symptoms are not improving, they are actually worsening this time around so we are switching things up for the first time in 2 years.

Just some thoughts from our experience - for us, wetting the bed = positive for strep. Every time. Without fail. We no longer even wait for other symptoms to worsen, wet the bed - off to the ped! The hyperactivity with the zithro could be the dye in the liquid form (pink). If he's swallowing pills, that may help. Also, it could be that the zithro is just failing. My son has been on this roller coaster for over 3 years. For the first 11 months, azith controlled his symptoms well - at about 90%, but then he continued to get strep while on full strength azith. We switched to cefdinir - that lasted about 9-10 months. Then we did T&A and switched to Augmentin - that worked for about 9 months as well, when we added rifampin for a new infection (which was the first abx to completely eliminate my son's tics). In June of last year, Dr. B switched him to Augmentin/Azith combined because he was still getting strep so often on treatment doses of single abx. That worked for us until September when - surprise surprise - he got strep AGAIN on the combination. Rifampin was added again - and now he's on all 3. It's a combo that works for us, as he has not had a positive throat culture since September 2012 (our longest stretch to date...knock on wood). So it may be that it's time to try a new antibiotic too. We also use ibuprofen regularly. Our ped does a metabolic panel on our son at least 1-2 times per year to check for any side effects, but he has said, in general, as long as you don't exceed the recommended daily dosage it should be fine. We give him ibuprofen in the morning, and again after school (6-8 hours later) if needed. If he's doing okay after school, we try to hold off and not give it again until the next day. If he starts to flare up an hour or so before bed - we just try to ride it out to keep from over-using the ibuprofen. For sleeping - we use melatonin. It works well for our son, and when we took him off he actually asked us to put him back on - told us it makes him sleep better.

My son had similar issues - except he would continue to test positive for strep while still on the abx. We were able to clear him up with a combination of Augmentin/Azith and Rifampin. Rifampin must be taken with another antibiotic (I forget why), but it's the only thing that cleared my son's strep. He's been on this combo since September - and hasn't had as positive strep test since (our longest stretch in 3+ years...knocking on some wood now). My daughter, on the other hand, is going through the same thing right now. She always been a relatively "easy" case- clears quickly with antibiotic treatment (symptoms subside after about 2 weeks when treated with a 30 day course of abx). This time - it's just not clearing...was just back in for another culture yesterday (only did the lab culture - she wouldn't cooperate for the rapid). She has a penicillin allergy, so our abx options that have worked for my son become a bit more limited...

llfran - odd, now it's telling me you can't receive new messages!! I cleared my inbox (which wasn't very full) - so you may want to try again.

If he seems to snap out of it after he eats, try giving him snack at bedtime. I have heard others say that low blood sugar can set their kids off and a small snack can help bring them out of it.

Dr. M is great for getting a diagnosis, but her treatment plans are very conservative. She is primarily a researcher, and has published boatloads on PANDAS. She's currently involved in a couple of abx trials for treating PANDAS. As such, she has to be careful how she treats patients. For example, my son is classic strep trigger PANDAS. He responded well to abx, but we could never get to 100% b/c he was constantly getting re-infected. She thought IVIG might help him, but b/c he presented with NO immune deficiencies (healthy as a horse...on paper), she was reluctant to order it b/c it isn't in line with her research. I understand that might jeapordize her funding. But she has several fellows on staff, most are pretty good, and they are pretty responsive to emails. She is local for us, so she was our obvious first choice, and she also took our insurance. We see doctors over at Rothman for CBT therapy - and have had great success with that too, and the therapists we work with all understand PANDAS from working with Dr. M. We also see Dr. B, he did Lyme testing through Igenix multiple times for us (all negative) and we recently did IVIG with my son up there with great sucess. We found that when we flew up for our first appointment, he was running a bit late (about a half hour or so), but when he saw us he was very thorough and took his time with us. The follow ups have all been via phone, and are not covered by ins. Those, I feel, are more rushed, and I'm often reminding him of specifics of my son's case, which I'm not a fan of. The last phone consult, however, we did with the PA. She was wonderful, I didn't feel rushed, and I felt like she was prepared and had read my sons file prior to the call. We are fortunate to have an amazing pediatrician who is very PANDAS friendly and gets us in for strep checks and gives us abx as needed to manage flares/symptoms. He was just not comfortable pursuing IVIG for us. But now that he has seen how my son responded to it, and has copies of the medical records, we may do IVIG locally in the future - for now, we are doing it up at Dr. B's - he also got it covered through our insurance, which helps offset the travel for us.

I thought I'd share our story briefly, I know in the past there have been several posts about the "turning back of pages" after IVIG, and things getting worse before they get better kind of thing. Quite frankly, they scared the bejeezus out of me! We were reluctant to try IVIG, partly because our son was so young, and partly because I felt until we got a handle on WHY he was getting strep so often (every 6-8 weeks), IVIG may be premature. Well, about 4 weeks ago we went up to CT to have our first IVIG with Dr. B. He was 2 at the time of dx, and is 5 now - so we thought the time was finally right. And the results have been nothing short of a miracle. We have not seen any "turn back the pages" or anything like that. In fact, with the exception of about 12 hours of headaches and vomiting (which happened through the night, so he slept through most of it off and on) - it has been a wonderful experience for us. The highlights - since IVIG our son has: - gained 3 lbs and is eating regularly (and then some!) with little/no anxiety about his food - is joining us at the dinner table at meal times and eating with us; even engaging in and initiating dinnertime conversations - is joining and asking to play family games instead of playing video games - is playing video games less than 2 hours a day (down from every waking moment!) and is asking others to play with him, and not getting upset if they beat him - brushing his teeth and showering on his own - more talkative and interactive when people are talking to him - has gone outside to play with friends of his own free will - has asked if his friends can come over to play - is reading books of his own free will The best by far, however, was the other day, when he curled up next to me, gave me big hugs and kisses and said "Mommy, I have a secret, I really DO love you and Daddy. I know sometimes I get angry and say that I hate you guys, but it's not true. Harvey makes me say that (his OCD). I really DO love you guys just as much as Millie (our dog)." We still have some ritualistic OCD around medicine time, and he's not getting dressed completely on his own yet, and we still have some trepidation about socks and shoes (although, since IVIG he has told me that the reason is he just doesn't like the socks I buy, can we get new ones. An improvement from the screaming fits and having to put them on and off multiple times before its "right") - but overall, we are about 95%+ better. And I couldn't be happier!!! Thought I would share our positive experience for others who are considering or going for IVIG soon.

Steroids are a tough one. They tend to work temporarily for PANDAS kids because they suppress the immune response causing the inflammation in the brain, as well as reduce the inflammation in general. However, steroids can also have a negative reaction in many kids - PANDAS or not - that include hyperactivity, rage, and even psychosis. This is why we never chose to try steroids to treat our kids' PANDAS. I didn't like the risk of the side effects. (Although - with our son's most recent IVIG - we did have to give in and give prednisone to counteract some of the side effects of the treatment...fortunately, there were no ill effects). If it is PANDAS - it may take trial and error to get the right antibiotic. We used Azith first, and while it didn't do much for my son's tics (grimaces as well), within 2 weeks was saw significant improvement on all other symptoms. The only thing that eliminated my son's tics entirely was getting his tonsils/adenoids removed - and then they returned with a subsequent infection. When we tried an Augmentin/Azith/Rifampin antibiotic combo - it eliminated the tics entirely (which by that time had evolved into a full upper body shruggy-thing) and they haven't returned post IVIG.

He'll likely draw blood right there in his office, so you may need to prepare for that. He is very thorough, he'll take a full history, and take the time to understand what is happening with your child. He sometimes runs behind (which I don't complain too much about because when he's with you, he takes his time and doesn't rush to get back on schedule, so it's comforting to know he takes that time with everyone.) so you may want to make sure you have something for your child to do if you are stuck waiting a while. He may also ask to draw labs on the whole family, he did for us. Good luck, my son liked him, and we just were there last month for our first IVIG - which has worked wonderfully so far!

Hyperactivity is one of our stubborn symptoms. From day one it was there, and our ped has always discussed the possibility that the ADHD may just be "separate" from the PANDAS. Yet - it fits the criteria, but for our son, it was the one thing that just would not resolve with any treatment. When he got his tonsils/adenoids out a while back, the hyperactivity (and ALL other symptoms) were gone, which helped us determine that - yes - his ADHD was PANDAS. Unfortunately, he got strep again 6 weeks post-op and we were back at square 1. The hyperactivity was the first symptom to come back, and it had gotten progressively worse over the year. Finally, in December, we made the decision to add ADHD meds (low dose Vyvanse) to the mix. He was becoming so impulsive, it was becoming dangerous. Darting into traffic, running off in parking lots or crowded places. Things that could ultimately get him killed (standing at the bus stop every morning was a nightmare!!!) The meds helped - we are 4 weeks post IVIG right now, and we took him off for a couple of weeks and he did well. We added them back this week, because we saw that he needed it again. His sister currently has strep, and while he has not reacted to her (Thank God!) the hyperactivity is back. It was a tough decision for us to add the ADHD meds - and one that took 3 years to come to, but in the end, I'm glad we did. We chose vyvanse because it's a low dose, and you don't have to wean them off if you want to stop it.

We have had a bit more hyperactivity over the last 2 weeks (3 weeks post IVIG), but we also tried to take him off his ADHD meds, possibly prematurely. As for IVIG not working if you're not gluten free- have to disagree with that one. We are not gluten free for a variety of reasons - primarily that my son has MAJOR food anxieties and often will only eat one food for weeks at a time, therefore he is severely underweight. We don't want to restrict his diet until we have a better handle on his eating and he gains some weight - I won't take away the few food he will eat regularly. So - we are not GF - but he has done MARVELOUSLY after his first IVIG. Almost 100%, only some minor rituals left at medicine time. Even brushed his own teeth this morning - a small miracle around here.

We are doing 1.5/1kg over 2 days every 2-3 months. However, I know someone else here in FL that is doing 1g/1k over 1 day every month. Her daughter seems to be doing very well with it. He daughter had 2/1k over 2 days the first time she had IVIG, but that was over a year ago, and she regressed. The 1/1k over 1 day was all she could get approval for this time around, but it seems to be working for her as long as it is monthly. So the protocol your doc is recommending may work - especially if they start with the higher dose.

You have to call for the kit, and the volunteer that I spoke to was very helpful, and gave lots of tips for IVIG and the like. It really is a good resource.

Yes- the play kit was awesome!!! My son still takes his bear everywhere!!!

No, I believe it was 1.5kg/g per day...but I'd have to double check

We just did that infusion rate and used octagam as well. We did it with Dr. B in CT. We are 3 weeks out and have had wonderful results so far. A few tips: Start hydrating a few days before hand, and keep pumping them with fluids through the process and for several days after. Popsicles, jello, fresh fruit are also ways to help with hydration. Give him motrin and benedryl about an hour or so before you go (if he can tolerate those). And then keep that up about every 6 hours throughout the process. You may want to have steroids and something for the nausea on hand as well. (Some have recommended Zofran, but if your son is on Azith and has not had a heart work up for Long QT formation, it's contraindicated with that, so we couldn't use it.) Have them keep the infusion rate SLOW - it will help minimize side effects. These are all things that others helped me out with when we went a few weeks ago. I was very nervous, but my 5 year old little man was great, very brave and strong. For us, the side effects were severe headache and vomiting that came on about 8 hours after the 2nd day of the infusion and lasted only about 8-10 hours or so. Good luck!!

Chad, There is also a 2 FB groups for teens/kids with PANDAS (I don't know the specifics, you can probably do a search and find them.) It might be helpful to them to hear your story and gather support from the fact that it can and will get better for them. Just a thought.

Chad, thanks for your story, it's great to hear. I have 2 kids with PANDAS, but in retrospect, I also suffered from it through my childhood. My strep history sounds very similar to yours, never being able to clear the strep, very high fevers, hospitalized more than once for strep. My PANDAS symptoms manifested in OCD and severe anxiety, no tics that I recall. While my tonsils were never removed - though my mom begged (it was out of fashion as a treatment back then), I eventually did outgrow the chronic strep my freshman year in college. I was hospitalized for seizures as well (had the hallucinations at that time too) but they never did figure out why, after a week in the hospital, I finally checked myself out and went home to my mom (mom's can fix anything). For some reason, after that time, my chronic strep resolved itself. I now have clinical OCD - likely as a result from the untreated PANDAS. I too am a civil engineer, (BA and MS in Civil Engineering - Transportation), and think it's wonderful that you've done so well and are succeeding. Good luck with your studies - they do get easier after you finish your core classes

We have not done the 3-week program at USF, but as they are local to us, we have done weekly behavior therapy there off an on for 3 years, they are wonderful there, and get the PANDAS aspect of it too - so that's a plus. (I'm not just raving about it because it's my alma mater either ) As for losing your cool - I find that my temper is the shortest when my kids are showing improvement. When they are at their worst for weeks on end, I seem to have more patience, but for some reason, after they are doing well for a few days/weeks, on minor slip seems to send me off the deep end. I think it is a PTSD type reaction. For me, I feel like we made it through the worst, only to be disappointed that it's not really over, and that's what makes me snap. It's not an excuse for me to lose it on my kids, but knowing that I have that pattern has helped me. It's helped my husband too - because he tends to be the opposite. He tends to wear down during the long stretches, but has unending patience during the "one-offs" we get as things improve. We tag team during those times, and it helps. We've all been there, done that, no need to beat yourself up about it.

I'm not a lyme expert - just a PANDAS mom, but I will relate our experience with lyme testing. My son is classic, textbook PANDAS. Only reacts to strep, no other infections/viruses, but has had chronic strep over the last 3 years, hence our struggle. We have never had any reason to suspect lyme. He has always responded well to abx, but has consistently caught strep (positive rapid and grown cultures) even while on treatment doses of abx. One of our PANDAS specialists ran a standard CDC Western Blot for Lyme on our son as a new patient last year as a matter of standard procedure. It came back positive for multiple bands (don't recall off hand which ones, sorry). We were all shocked, based on his history we did not expect a positive result. Based on those results, he requested Igenix testing for Lyme/co-infections to see what we were dealing with. Those tests (at great out of pocket expense) came back negative across the board for Lyme. Because of the conflicting results, a few months later, prior to going for IVIG, another full Igenix panel was run (again, at great out of pocket expense) and again it was negative across the board. I have read/heard a lot about how unreliable the CDC test is for false negatives for Lyme, but based on our experience, we were hit with a false positive. We still have no reason to suspect Lyme, and my son has responded wonderfully to IVIG, with little/no "turning back the pages" so often reported. And the last round of labs prior to IVIG indicated that he is not producing 6 of the 14 antibodies for strep - which may contribute to our chronic strep problem. We have opted not to pursue continued Lyme dx or treatment with an LLMD because it does not seem to make sense in our case. We have never seen any symptoms that were not directly related, or shown improvement with PANDAS treatment. That being said, I know that there are other varying opinions on the matter, and I am simply offering our personal experience.

There have been quite a few new families on here the last couple of weeks, and it might be helpful to remind everyone about the IVIG study currently being done by NIMH. Last I heard (yesterday), they were still looking for 2-3 families to participate so they can complete the research. They are looking for new onset cases, and if your child qualifies, they will get IVIG treatment as part of the study. (They may be in the placebo group to start, but if they are given the placebo - they will be given IVIG as a follow up.) This is the research that many are hoping will open up the doors for insurance carriers to cover IVIG for PANDAS/PANS. If you're a new onset family - it's may be something you're interested in checking out. http://intramural.nimh.nih.gov/pdn/web.htm http://clinicaltrials.gov/ct2/show/NCT01281969 (Thanks peglem for the reminder!!)

Good call peglem - they only need 2-3 more families I believe...

My son was very young when dx as well, only 2 (onset with a strep infection at 20 months - took us 6 months to get help, even though the personality change was severe and overnight, we also thought it was just the terrible twos). I wanted to let you know that we also had our doubts. As he would get better between infections (which he had A LOT of them), we would question if he really had anything wrong with him or if it was just us not following through enough, or spoiling him, etc... But then he would get another strep infection and refuse to go through doors if someone touched the doorknob - and we'd be believers again. We were up and down a lot like that in our first year or so. My son is 5 now, and my daughter who will be 7 next week also was dx with PANDAS just last year. It affects each of my children differently. What helped us immensely in the beginning was keeping a daily log/journal of symptoms and progress. It helped us track what was/wasn't working, and identify patterns. For example, we know now that if my son wets the bed, he has strep. 100% of the time when he as wet the bed in the last 3 years, he was + for strep. We see that happen, we don't wait around for other symptoms to present, we head straight to the doctor. It also helped reassure us that we weren't crazy and that there was a problem. It was there in black and white. We used a numerical "score" system and tracked it using excel. We used graphs to visually see progress and patterns, and it was great. Our docs loved it too because it helped them track treatment options and progress. If you're interested, I can email you a copy of the spreadsheet we used - just PM me your email address and I'll send it over.

My son was dx at 2 years old and is now 5, much of what you're describing we have also experienced. He often "becomes" characters from something else, at first it was Thomas the Train, he would wake up each morning and announce who he was, and if you called him by any other name it would be a huge rage. Now, it's on to video game characters (Sonic the Hedgehog, Ratchet and Clank, etc...) This happens much more often when he is in flares than any other time. As for the "personality switch" - that is common for us here too, although he doesn't always associate it with the name change. He actually gets a new "face", a look in his eyes, muscles tense up in his face, etc...and we can tell it's not him anymore. We call it the "jeckyl and hyde". We have found that ibuprofen helps immensely when he has those moments, usually pulling him out within about 10 minutes (although it may take us longer to get him to take it!!) If your son has his "jekyl and hyde" moments when he changes his name, you may be able to use that to your advantage. Our therapist suggested our son "name" his OCD, so that he can separate the things his OCD makes him do from his real personality. He's not a bad kid, "Harvey" makes him do things that are bad. It has helped his self esteem, and has given him a vocabulary to talk about what's going on in his head. At 5 years old, he has even started self advocating - telling me and the doctors which abx has made "Harvey" go away or be quiet. As for the forgetfulness, this in one that we see more in my daughter than my son (yes, she's also PANDAS), but in her case, we figured out it's not actually forgetfulness, it's reassurance, a common OCD trait. She just needs to be told things she knows over and over again. Sometimes they are important things (what time do I have to go to school? Do you love me?) other times they are just mundane and weird (what color was the car next to us at the red light?) but she asks over and over and over. Hope this helps!

I agree it may take a bit longer to see improvement, we saw changes about 2 weeks into our first month of treatment for our son. My daughter is also allergic to penicillin and uses cefdinir, and again, it usually takes her about 2 weeks from starting abx for us to see her start coming out of her flare. I would recommend you start keeping a journal of symptoms and tracking daily progress. That helped us immensely in the early stages to not only see what was/wasn't helping, but also to identify strep related patterns. (for example - when ever my 5 yo son wets the bed he is + for strep - 100% of the time. Now if he wets the bed, we immediately take him in to be checked before symptoms get worse). We used a numerical scale (helped take the emotion out of it) and tracked in on an excel spreadsheet. It helped us see that even with ups and downs, our bad days still were getting progressively better. If you are interested, I can email you a copy of the spreadsheet we used, just PM me your email address and I'll send it over.