airial95

This sounds alot like ODD to me, it was one of our son's earliest symptoms. It may be OCD related, but it sounds just like our little guy's ODD. He wants to do what he's asked, or make the choice that you're giving but for some reason - he does the opposite. ODD is a part of PANDAS - but it's not often talked about for some reason. I wish I had some helpful hints for you - but it has been one of our hardest behaviors. It has gotten better as he gets better though, and only recurrs when he's in an episode.

We have been in a management state, I think, since our initial journey started. Although we do we have chronic strep infections(I think we're up to 18 since 1/10 - but I,m losing count) We've only been able to get him consistently to 85% with abx, the only time we were at 100% was for a few weeks post T&A lat November. I absolutely believe that early intervention at each sign of infection was important to keeping him functional. And I think we've done a good job of keeping him functional. We've been happy with that for the last two years and have become effective managers of this condition. We started severe, but our episodes have gotten milder because of early intervention. we were happy managing things and with just keeping him functional because he was so young when this started we didn't want to try more aggressive treatments. I can see why many families, for various reasons, would be happy with that and want to keep that going - financial, other health reasons, fear of rocking the boat and loosing the functionality they have. It's a personal choice for you and your child, and in our case it has served us well for 2 years. Now, that being said, after 2 years, now that he's 4 1/2 and has one more year before starting kindergarten, we are starting to explore a more aggressive path. What changed for us was seeing him at 100% after surgery. We now had proof that he could get beter, and by being satisfied with managing functional we were short changing our child. I can honestly say, without seeing that, I'm not sure we would be changing course. We were firmly in the "don't rock the boat" category. We're also starting to see it impact his happiness, kids asking about the tics, the OCd affecting some interaction with his playmates. I think we were also happy with functional because he was happy. The few things we see now, will only be magnified when he started mainstream kindergarten (he's in special-Ed pre- k now). So we're going to try to take advantage of the extra year his late birthday gives us to get aggressive. I support those who are in management mode, because I understand it completely, in outr case, it has worked for 2 years.

For those of you who are familiar with our story, you're aware that our problem has been the non-stop chronic infection. We get our son to about 85% and then BAM - positive again. If we try to take him off abx, he's positive almost instantly, and has even tested positive several times while on full strength abx. The only time we have ever seen a 100% remission in PANDAS since our journey started in 2009 (dx in Jan 2010) was last November after the T&A - it was 6 weeks of practically perfection until the first week in Jan when he tested positive AGAIN! Every round of bloodwork and immune work ups have come back maddeningly normal (negative for EVERYTHING!) and our pediatrician (who is PANDAS friendly and AWESOME!) is just at a loss. We see Dr. M's office as our PANDAS specialist - primarily because she's local, but also because she tends to be conservative with treatment, and starting this journey when our son was just barely 2 years old - that suited us. Well - after his THIRD strep infection since the 1st of the year, we are just beside ourselves. At our appointment with Dr. M's office for our daughter last month, we mentioned that our son had already tested + 2x this year (which they knew, since we always send over notification for their records) and at our next appointment on March 7th, we'd like to talk about next steps for him because we're at a loss. About a week and a half after that appointment - he tested positive again!!! We had that appointment on Wednesday, I dragged my husband along because I knew that we would likely be making decisions on moving forward, and wanted him to hear everything for himself. Dr. Toufexis (the fellow that we see at Dr. M's office regularly - who I ADORE!) said that they were just as dumbfounded as everyone else. Sending us back to immunology wasn't really going to do much - and she even implied that the immunologists report was a joke (since everything came back normal, her recommendation was increased handwashing and new toothbrushes with every infection - seriously.) Dr. M acknowledged that my son's case was the most challenging one they have ever come across. They're referring us to an infectious disease specialist - who they've already consulted on our case. But they also fquite frankly acknowledged that we may want to consider getting another PANDAS specialist on board, because they're not quite sure where to go next with him (even went so far as to mention Dr. B and Dr. T by name) They'd be willing to try IVIG or steroids with him - but said that it might not be useful if he just gets sick again every few weeks. They think that either he's harboring the strep somewhere in the body that we just can't figure out (hence the ID specialist), or it may be some other infection causing the issue (we discovered at this appoinment that the pathologist report from his T&A - while negative for strep, did show positive for H. influenza). When I called the ID yesterday morning, I was impressed, as soon as I said my name, they knew exactly who I was, they were expecting our call, and already had two appointment times set aside within the next two weeks just for us if one of them worked. That appointment is on the 28th of this month. We also pulled the trigger and called Dr. B and made an appointment for June (they could've gotten us in early May, but I wanted to wait until school was out). I never really thought of our son's case as being that big of a challenge - he's pretty textbook. We see a spike in behaviors - he's always positive for strep and he responds well to abx. When I read others experiences on here, I've been thankful that we've had it so relatively "easy" - guess I didn't realize what might be considered challenging to the docs!

They only did bloodwork, other than the normal blood pressure, vitals type stuff at the start of the appointment. However, they don't do the bloodwork themselves, they request it from a lab (or your pediatrician if they can do it in house - although ours isn't capable of running some of the stuff that they request.) So I would ask them to fax over orders so you can do it and have the results sent prior to your travelling, that way you can also do it on your daughter's "terms". (For us, it was a breakfast of dunkin' donuts afterwards and a new DS game )

We see Dr. M. for both of our PANDAS kids, she's local for us, so the travel cost isn't something that we have to consider. My son was 2 at the time of his first consult (he's 4 now, and a sever case), my daughter 5, and a mild case - like yours. I will tell you this, the first appointment with her is very thorough - over an hour for my daughter, a couple of hours for my son. My daughter was doing very well when we had her initial appointment in January - so there are similarities with your case. The Dr. reviewed her medical history, took a detailed history from us outlining symptoms, etc. and ordered a thorough set of lab work. At your daughters age, most of the appointment is spent taking a history from you of timelines, behaviors, etc... They will ask your daughter a few questions, but with their young age, it's mostly the parent they're dealing with. They confirmed the PANDAS dx at the initial appointment, and at the follow up after the bloodwork came back (which she was still in remission), plotted a treatment course for future infections to be used by our pediatrician. In her case, they even indicated that future follow ups were not necessary unless things went very south. But they did provide a detailed protocol for our pediatrician to use. Our ped is awesome, and has seen a few cases, but was by no means an expert - so he's welcomed their opinions on treatment options. I will say that Dr. M is more conservative than other docs, focusing primarily on abx, but will consider IVIG if there are other immune reasons. Her staff is pretty responsive to email, usually responding within 24-48 hours. If I were you, I would keep the appointment, but I would call ahead and ask for the lab orders for any and all bloodwork they need so the results are there when you have the appointment. This would possibly eliminate the need for a follow up like we had to review blood results. Having a specialist on board will help your pediatrician if he encounters any roadblocks, and may help if insurance starts to question treatments like long term abx that may be needed. It will also be easier to get future appointments with the office if things do go south - and they'll already have her established history. Just my 2 cents for what it's worth! Good luck!

I question her "objectivity" when she mentions the support groups and basically calls us a bunch of delusional doctor shoppers for antibiotics...

oops multiple post

My son has previously gotten strep while on azith (proph dose and full dose), and then just recently while on full strength Augmentin. Our pediatrician said, while it's unusual it can happen. He told us that there are many strains of strep, and some are more resisitant to certain antibiotics than others. While on the Augmentin, he may have gotten a strain that doesn't respond to that. He boosted us with a short course of Azith. Of course, less than a month later we were positive again

oops mulitple post

Just a quick update since he tested positive again on Monday, our pediatrician recommended we call Dr. M's office that day to see if they wanted to try something other than the Augmentin he was prescribing - and also in light of the new infection if there were any additional labs they wanted run prior to him starting abx. They initially said no, but called back yesterday afternoon and wanted new titers run and a few other things (I was travelling for work yesterday, so they had to fax the orders directly to the lab so I didn't see what else they ordered). They wanted them done by today at the latest, so my poor little guy got to wake up to a surprise trip to the blood doctors - he wasn't happy about it. He's been at my dad's house today (kept him home from school), and my dad said that he's been sleeping since around 10 AM. Poor guy My post regarding our appointment to the immunologist above reminded me also, that while all of his labs were normal before, he did still have his tonsils, so the first, and most likely cause of chronic infection was likely to be there, now that they're gone, maybe they'll start looking for other things.

Good reminder here. If the antibodies the body is making are busy attacking the brain, perhaps there aren't any/enough actually dealing with the strep. Our immunologist put it to me this way - which I thought was a simplistic, but interesting and understandable way of thinking about it: what his normal bloodwork is showing us is that his immune system may be making the appropriate antibodies, and making them at the right times, so everything looks normal. The problem with PANDAS, is that the antibodies that are being created are broken, so they misinterpret signals. Since the blood work can only identify if the antibodies are being made appropriately, we can't see that they're broken. Of course, she said this pre-T&A when the answers to all of our chronic strep problems were hiding there!

He does usually come back positive on the rapid, and other times, even when the rapid is negative, he has the other clinical (non-PANDAS) signs of strep - elevated heart rate, "thingies" on the tongue (my totally accurate medical term ), there's one more thing around the eyes my doctor mentioned as clinical for strep, but I can't remember what he called it - but the white parts (again, very technical) get discolored and slightly blood shot and he gets really drawn around the eyes so much so that he looks sick.

Wow! Thanks so much for the overwhelming responses!! Let's see if I can cover some of the questions... First - Lyme, we haven't looked into Lyme up to this point simply because he was classic strep. He's always cultured postive (even with no rise in tiiers), and no other infections seem to trigger him. But obviously at this point - we're going to be talking with the docs about anything and everything! They have look at quantitavie and subclass, as well as SAD and T and B cell functions. They've also looked for all the usual culprits as well, including myco p. - eventhough we're typically strep only. On paper - he's the picture of freaking health! We've gotten the whole family tested and treated - no carriers, although my daughter had 4 asymptomatic infections last year (which helped lead to her dx.) Dogs have been treated 2x with abx (our vet opted to just treat rather than do blood work b/c she said it may be unreliable). We all get swabed whenever either of the kids test positive just to be on the safe side as well. He's been on full strength Azith, Cefidinir and now Augmentin - he's only 4, and until his surgery was underwieght thanks to the food related OCD (although our pediatrician ran a full metabolic work up to make sure there wasn't an underlying cause there either). Every time we have tried to stop or lower dosage he tests positive again. He has also tested positive even while on the full strength dose. Like I said, the motrin has been helping, but sure enough the pediatrician confirmed strep again today. So he's back on Augmentin. The daily Motrin dosing has kept this episode at around a 4 compared to our usual 8-10's. So we're thankful for that - and for a pediatrician that doesn't think I'm Munchausens when I'm in there every 2 weeks!! I think both the ped and I knew that without the abx he'd likely turn up positive rather quickly and that the Motrin alone wouldn't prevent that - but we were both just willing to try antyhing at this point. I don't have copies of his labs here at the house, my hubby keeps the records at his office - so I'll have to see if they've looked at the other things you all have recommended to be loooked at - if not, I'll bring it up on the 7th. I appreciate all the support, and keep the good advice coming!!! In the meantime, I'll be over on E-bay searching for plastic bubbles.

For those of you who have followed my son's case, he's pretty clear cut PANDAS. Flares with strep, or when exposed to strep, mostly food-related OCD, ODD, ADHD and only a few mild tics. He was 19-20 months at onset - 26 months old at dx (when we finally realized it wasn't the "terrible twos") The first year of treatment with abx got him back to around 80-90%, with the ADHD and residual OCD hanging around like learned behavior. That was going away with behavior therapy so we thought we were going along on the right path. Our issue has been chronic infection, the longest he's been able to stop abx was 5 weeks last winter, before testing positive again, and he has even tested positive several times while on full strength abx - most recently 2 weeks ago. In November 2011, after more than a dozen infections, we did a T&A, and it was nothing short of a miracle - COMPLETE remission of symptoms. The tonsil culture came back negative, surprisingly, and the ENT wanted to discontinue abx, Dr. M and our pediatrician thought that was too soon to stop entirely, but when the docs tried to lower his dose of Augmentin about 2 weeks post-op, one single tic started up, so he went back to full strength (unfortunately the tic didn't go away - but that was the ONLY symptom shwoing up.) Nothing else returned. They kept him on the full strength Augmentin through the holidays, and Dr. M and our pediatrician agreed that we should try to take him off. Within in 5 days all of his symptoms were back - bedwetting, ADHD , OCD at mealtimes, everything, AND he was positive for strep again. He went back on full strength Augmentin - but unfortunately now the results were similar to what we had seen before. All the progress we made with the T&A was completely wiped out. About 2 weeks ago - while still on the Augmentin, things started to flare again, took him in to the ped - and BAM - positive AGAIN!! Our pediatrician supplemented with 5 days of Azith, but also decided to try a different approach. WARNING: I'm about to relay some information that my doctor told me about from a paper that he read - I don't know what paper, I haven't read it, and I'm sure I'm getting some critical points wrong - this is just my understanding of what we talked about! He had read what he described as an "obscure paper" that discussed the inflammation issue in more detail, he mentioned something called CRP (I may have that wrong) and it being some sort of indicator of inflammation. For some reason, in PANDAS kids, this is showing up earlier than it is expected to, even before infection, so his thought is that if we actively try to treat/control the inflammation, when he does become re-infected, we may be able to prevent, or minimize the immune attack. He suggested we run the rest of the abx (the 5 days of azith, and we were only about 6 days left on the Augmentin before the next refill) then stop, and start regularly dosing with Motrin for a couple of weeks. I asked about the side effects of long term Motrin use, and he wasn't worried about that for the time being, as long as we didn't exceed the daily recommended dosage for his weight. Basically, his thought is if we can't beat the infection, let's try to fight the inflamation. We talked about IVIG/steroids/PEX as potential avenues forward, but he confirmed my understanding that these are all things that can help stop the immune response, with is critical for most PANDAS kids, but it won't necessarily do anything to prevent him from getting strep again - which seems to be our bigger problem at this point. The next week, we were in Dr. M's office meeting with Dr. Toufexis about my daughter's case and she asked about our son, I updated her on the 2 new infections, and our pediatrician's theory on the CRP. She was impressed that he had even read that paper - because it was indeed obscure, and thought his approach was interesting, and was anxious to see how it works out. Our son has his own appointment with Dr. M's office on March 7th, and based on the latest information, and 2 new infections post-op, we expect it to be an interseting appointment. My son's chronic infection history is confounding everyone - there has never been even 1 blip, or issue with any of his blood work, the immunologist even called his labs "excellent" - so no one has a clue why he always has strep. That being said, the Motrin protocol that we're using has been somewhat effective. We're giving it 2x day, in the morning, and late afternoon, we we're not even maximizing our daily dosage. Last week, he began to show signs of being positive again, bedwetting and frequent urination being key tells for us. That started on Wednesday, and while we have seen some of the food OCD (which is therpay techniques are working for), and some occasional hyperactivity, other than the tic (which has never left since it came on post-op) - it seems to be very mild if it is indeed strep. (We're going in to the ped today for a swab - we wanted to wait through the weekend to see what's up). My husband and I have began talking that we may think it's time to bring another expert on board. We like Dr. M, but she is conservative in her treatment approach, which was perfect for us when we were dealing with a 2 year old. We've been told by her office that it's likely after the 7th we'll be referred to the head of Immunology at All-Childrens, which we would follow through with. Our pediatrician, by his own admission, has limited experience with IVIG/PEX, and has NO experience with them, or the use of steroids, for PANDAS treatments - all of his other cases have resolved with long term abx. My son is the weirdo! Any thoughts, or suggestions on direction - considering chronic re-infection, not necessarily symptom control, is our biggest issue? Would IVIG or PEX help our son if he just gets sick again immediately following- even while on abx?

I can see the usefulness of this for the elderly, or someone who has complex medical issues (like many of our children). I have a good friend who is a pharmacist and she always complains that her least favorite part of the job is having to tell patients that the script that specialst X prescribed shouldn't be used with the script that she's currently taking from speicalist Y. This happens mostly with her elderly patients who see multiple doctors and don't communicate well with each other. Seeing as we live in Florida, she see's that alot. I could see how even a GP - though not the expert, could at least be the gatekeeper of all the records to make sure that care is being managed well and there are no conflicts with rx, etc... That being said, we are very fortunate that our kids' pediatrician sort of acts in this manner already. He's responsive to email (within 24 hours if it's something requiring follow up, 48 hours otherwise), has an on-call service in the evenings (never waited more than 15 minutes for a call back). Even though he's a single doctor practice, with no other physicians supporting him, I've never had to wait for an appointment - he's even kept the office open late for my daughter when she was having an allergy attack at day care that looked bad so he could see her immediately. Not to mention he's extremely PANDAS friendly, and fairly knowledgeable. He sees treating with long term abx somewhat of a no-brainer, but is hesitant on other treatments (IVIG, steroids, PEX) becuase he's not as familiar with them - but will absolutely defer to the experts and work with them willingly. He insists on having copies of ALL records from any other doctors or specialists our kids see so he always has a complete picture of what's happening. So these guys do exist - they're a needle in a haystack, but they're out there without the additional costs!!

We have had some labs that do the draws say we had to, and others say we didn't. After one experience with my little one where he had to come back 2x because he wasn't big enough for them to draw all the blood they needed for all of the workups, only to be told the 2nd time (after they poked and started the draw) that there was one test they couldn't draw cause he hadn't fasted - so that ONE set of labs required 3 trips/pokes - I always now get their labs drawn first thing in the morning - before they eat - and then treat them to a "special breakfast" afterwards just to be safe and avoid that situation again!

In the fine print at the end of the article it says it's from the April 2012 issue. I haven't gotten mine yet ( I have a subscription). But I'll post when I see it!

thenmama, I'm glad to hear about how your son has coped, because one of my biggest worries is that my gifted little boy will fall behind because his fine motor skills haven't developed enough thanks to PANDAS for him to keep up once he's mainstreamed! He likes the computer, maybe I need to start working with him on his typing!!

EAMom - you make an interesting point about these naysayer doctors. He implies parents trying 5 or 6 different abx are searching for something that isn't there, but yet these same doctors think nothing about trying dozens of "typical" treatments (psych drugs) when they don't seem to be working...at that point - whose the delusional one!

While Florida is not Maui - it certainly isn't Chicago either, and I can tell you - we've had over a dozen infections in less than 2 years - so if you ask me, the weather has not helped! Although - if you're looking for a tutor to go with you and teach your son if you do make the move...let me know!

Our son was young at dx as well, only 2. When he was 3 we had him screend for OT for his loss of motor skills. Our most noticable issue at the time was when he was eating, he would resort to eating everything with his hands like a toddler because using utensils was nearly impossible for him. The private OT we took him too, as well as the OT at the school (he's in special ed pre-K right now) saw the issues, but since they were transient (a classic PANDAS trademark), and since at his age the fine motor skills are still not strong and are continuting to build, neither felt he qualified. They gave us some suggestions as far as eating utensils that would help (bigger, curved handles, that sort of thing.) He's 4 1/2 now, and we still see some of the eating issues when he's in a flare, but we're very concerned about his handwriting - he is behind for his age (and his academic ability) - he can read, spell and do addition and subtraction, but he can't write his name. He still can't draw pictures that look remotely like anything other than scribbles on the page, and he should be able to be drawing what I call "head people" by now - circle with a face with arms and legs coming out of it. His teacher says that he fights her when it's time to write, but that she's using a program called "writing without tears" which is working for him and he seems to enjoy, but unless she pushes him and stays with him, he can't/won't do it on his own. I suspect that his "just right" OCD also has something to do with it - because we see it at home when we try to get him to write his letters, he'll try 1, and if it's not perfect start to cry and get frustrated and quit, refusing to do any more because he "can't". His teacher recommended getting him assessed again at the end of the school year to see if he improves - since he's a late fall birthday, he has 1 more year in that program before he starts Kindergarten, so she's recommending waiting to see if he does improve as his health improves, and focus on OT next year if it's still an issue. I guess my point, is that in our case his age and limited issues was what didn't qualify him for OT becuase they said the skills were still developing, and while there was a regression, it still wasn't outside of the normal range for his age.

Dr. Bradley Schlaggar, a neurologist at St. Louis Children's Hospital who has researched PANDAS, said he worries a renewed focus on the disorders might discourage some doctors and parents from pursuing other explanations for symptoms. "I've seen kids on five, six different antibiotics for what is clearly Tourette syndrome that is not strep-triggered, and that's a problem," Schlaggar said. ‎^ This neurologist is really irritating. While he worries about PANDAS families trying multiple antibiotics, he apparently doesn't seem at all concerned about the PANDAS kids that go misdiagnosed for YEARS...losing their childhood and risking mental illness as adults while they are unsucessfully treated for Tourettes (or Conversion Disorder) with 1/2 dozen or more anti-tic and psych. drugs (including atypical anti-psychotics and SSRI's with black box warning labels). Why is it so okay to use muliple pscyh. drugs simultaneously on a young child, but antibiotics are taboo and "dangerous"? It seems like it is the docs that diagnose Coversion Disorder and TS are the ones that don't want to "pursue other explanations for symptoms". But then again, these are the same docs that think they can "rule out" PANDAS with a single normal ASO. Ok - I'll play devil's advocate here - On one hand, I understand the underlying concern - when taken in context. It's a conversation my pediatrician and I have had many times over the past 2 years as we've shared research, etc. In our case, it was discussed relative to my son's ADHD aspect of PANDAS, we've discussed many times that the ADHD (which is one of our stubborn symptoms) may be independent of our PANDAS and ultimately may not be treatable in the same way, if we got every other sypmtom under control with the abx except the ADHD, it may not be that we need a new abx or PANDAS treatment to try, we may need to understand that the ADHD is unrelated. (Turns out his ADHD is PANDAS related as we discovered during our happy time after the T&A!) Our pediatrican is extremely PANDAS friendly and knowledgeable, and is willing to try mulitple abx if needed, but he also has says that it needs to be understood that TS and OCD are also still very real childhood conditions on their own, and while in his opinion, a larger share of it than commonly accepted is actually infection related, it's not always easy to convince a parent that it's just plain TS or OCD if they want it to be something "easier" like PANDAS. And yes, we both chuckled when he said it because we both know there's nothing "easy" about this, at least not in my son's case!!! Now - all that being said, I've read the article, and unless there was more to his quote that was not in the articlue, that doesn't seem to be his real concern. As we know, in reality it's the opposite, Dr's use the OCD/TS label to STOP looking at other causes - while I agree, if you've tried multiple PANDAS treatments and nothing has made a difference, it may be time to start opening your mind to other possibilities, but a straight TS/OCD dx without considering the root cause is the bigger issue on had. But he seems to imply that people who look beyond the TS/OCD dx are delusional. Since I can at least understand his concern in a certain context...I'd like to say it was Dr. "overreported and overdiagnosed" that really cheesed me off in this article!

I thought it was I'VE as we'll, and actually OT may have been, but our pediatrician mentioned it was a shot of rocefin in passing after he saw the surgery report. I haven't looked at the report myself, so I'm just going by what I remember him saying. I may be wrong, but the major point is he had abx during the surgery itself.

Yes! My son has had over a dozen or so positive cultures over the last 2 years during our journey and NONE of his titers have been elevated at any time. He also has maddeningly normal immune workups - showing no deficiencies or ANYTHING out of the normal range. Yet he is a severe, and textbook, case of PANDAS.

I think that abx are her preferred approach, and what she focuses her research on. She will do IVIG, but only if there is also an underlying immune deficiency, which I know is the case for many here, just not for us!! We haven't discussed steroids for a while, but she wasn't supportive of that option when I asked last, concerned about the potential For steroid induced psychosis I think, but I can't be sure if that was her general stance on it, or just her opinion in our case because our son was not quite 3 years old at the time.