airial95

We had and IEP specifically for PANDAS for my son for 3 years through pre-K and just shifted to a 504 for K because the services were weren't needed anymore, just the accommodations. We handled the waxing and waning very simply - but he was younger. We described how it comes and goes, and had very detailed documentation in the IEP - however, the IEP - and all services involved - were in place for the year. Period. Until the next IEP meeting. If things changed significantly enough, a new IEP meeting would be convened to discuss changes (which has to be done legally anyway). We did not include any way to turn on/off the IEP through the year. We liked it this way for a couple of reasons, first of all, I didn't want the school changing anything on him without my express consent. At the time, he was consistently improving, but still dealing with chronic strep. So we also didn't want his bouncing between placements to often as things went up and down. His teacher liked it because he was in an EELP (Early Exceptional Learning Program) class that had kids with a wide range of abilities. My son has tested gifted on all of his developmental assessments, so she found that having him around when things were good had a great effect on the other kids. (They're supposed to put some "mainstream" kids in these placements for social cues, etc...but apparently they rarely do at the pre-K level where we are). It worked well for us. Now, both kids have a 504 plan because they do not need full services - just accommodations. We have it written into the 504 plan that in the case of a documented strep infections - accommodations automatically apply. That goes for strep for our kids, or just strep in the classroom. As for make up work for low grades/missed assignments. We can request that from the teacher for assignments up to a week PRIOR to being notified of the strep infection. (We saw a clear pattern with my daughter). We have it in the 504 that we have to request the make up work/tests - it's not automatic. This was a compromise my husband and I came up with. We have been concerned (especially with my daughter who hates homework even when NOT flaring) that she would eventually try to use her PANDAS as a crutch, or an excuse to get out of assignments she didn't want to do. She is in 2nd grade, and as of right now, doesn't even know what's in her 504 plan specifically - and for now we are good with that. By requiring US to contact the teacher for the make up work, it provided us a level of accountability for her not trying to use it when she just did poorly on an assignment for lack of effort/studying. (It doesn't happen too often, but from time to time she's a typical 8 year old kid who would rather be watching One Direction videos on YouTube than researching the Seneca Indian tribe...) Hope some of this helps!!

HAving PANDAS knowledgeable therapist does help. We are fortunate that the Rothman Center - and all of their therapists - are local for us (about a 45 minute drive over the big bridge). So we use them.

We did once a week at first, and then down to every 2 weeks, and now just go 1x per month for my daughter. My daughter also refuses to talk about what is making her nervous - and that is what therapy has helped us with the most. It gave her tools and a vocabulary to use that made her feel "safe". For my son - he was 3 when he started - they told us to name his OCD (we call it Harvey) because it would be easier for him to dissociate things that Harvey makes him do vs. being a disobedient child. Now he can seamlessly say when things are getting rough that it's Harvey, and we know what we are dealing with. Being nervous about doing exposures in public is natural, but honestly, you have to just think "screw it" about anyone who will notice. You're doing what's best for your child, and if they sense that you are nervous or hesitant, it will affect their progress. The therapist should also give you a vocabulary to use as well. Surprisingly, each of our therapists did not encourage us to use too much reassurance (it's okay, it's going to pass, etc...) - but rather the opposite. Directly confront the feelings - reaffirm them. "That's pretty scary huh?". "I bet that's really freaking you out." and not to use open ended questions like "how are you feeling now". It was so hard at first - because you really do feel like a terrible parent. It's like you're FORCING your child to feel all of this anxiety and you're torturing them - but ultimately it has worked for us. One of our hardest was my daughter's reassurance OCD. She didn't ask questions repeatedly, but would constantly (100+ times per day) say things like "you don't love me", "you love my brother/daddy/the dog/your van...etc. more than me", "everyone at school hates me", and so on. These would naturally prompt any parent to reassure the child that of course they are loved, and remind them of their friends, etc... But the CBT response to that is to tell the child you will only respond X amount of times each day (start big, and slowly work your way to 3 or so), after that - you're not going to answer them. Remind them periodically how many times you've already said it: "Of course I love you very much, that's the fourth time today I've said it, remember, I'm only allowed to say it one more time today". If they go over - respond with "I think you know the answer to that question", or "what have I told you before". Our therapist even told us it was okay to respond with humor and sarcasm (something that there is PLENTY of in our family!)- especially with some of the more unreasonable ones: "You're right, you figured it out, I DO love my minivan more than you!!! I was hoping it would never come out..." In our case, it would make my daughter laugh and reduce the anxiety. As a parent - nothing was harder than having to refuse to tell my daughter how much I love her, and how wonderful she is. And I could still do it spontaneously - but not if she asked or fished for it. You'll find that once you get used to the techniques, you can apply them regularly yourself. Even when the OCD changes (and yes - it changes for us). We typically return to regular therapy if there is something particularly stubborn happening that we aren't having luck with. A common phrase in our house is that "Mommy and Daddy don't listen to Harvey, so we won't do XYZ", or "who should you listen to, Mommy and Daddy - or Harvey". These prompts help our kids push through.

JoyBop makes a good point that I missed, for each of our therapists, the first couple of visits were them getting to know us and the child. Yes, we talked about the issues and the plan to address them, but it was primarily about getting everyone comfortable. It took 3 appointments with our latest therapist before my daughter would do more than squeak or grunt in the room with him. There were lots of conversations about hobbies, activities and One Direction during that time to try to make her comfortable enough to work. Her first "real" session came week 4 - and she still insisted in sitting behind the couch through the duration. Now she loves Dr. Josh and is comfortable, but we are still in every appt. (she is 7). Remember, a good portion of the therapy is related to training YOU how to deal with it as well. There are a lot of things that we do as parents that enable (for lack of a better word) the OCD - and it's just as important for our behavior to change to support the end goal.

Awesome!!!

Our son, at onset, would have surely been given an ASD dx if it wasn't for our amazing pediatrician. He had seen PANDAS before (although never in one so young - 26 months), my sons regression- he felt - was far to severe to be "simply autism", and the timeline of the start of his regression coincided EXACTLY with an impetigo infection. All things that made our ped think PANDAS first. Fortunately, after 4 years - my son no longer shows ANY signs of autism, although PANDAS is still a struggle with his history of chronic strep. Now that I have given my background, this is something my pediatrician and I have discussed many times before. His theory (based solely on his experience), is that the word "autism" itself is part of the problem. According to him - autism is just a group of related symptoms, however rarely is a cause looked for once the label "autism" is put on it. He believes that PANDAS/PANS falls on the "spectrum" - because the symptoms overlap, and that if more doctors looked for an underlying REASON for the autistic symptoms, many more cases of PANDAS/PANS (or similar disorders) would likely be found. We both have acknowledged that if in the care of another doctor - my son would have been lost to us years ago, because once given the diagnosis of autism - our path to healing with him would've taken a much different route, and it may have taken us YEARS to find the root cause of his symptoms (strep) - and even then, it would have likely been on accident. Which is something that often comes to mind when I hear stories of people who have fully recovered their autistic children - was it truly "autism" in the "traditional sense", or really was it something else entirely - like PANDAS/PANS - that was missed because once a child fit the autism checklist, the doctor's job was done. And to be sure, as the mom of a son whose onset was at 19 months - he overwhelmingly fit the bill for autism, so especially in very young kids, misdiagnosis is a huge concern.

If you need to see the therapist in action - be sure to communicate that with them. Both of my kids have done CBT/ERP in the past. We have seen 4 different therapists (the first were through early steps, prior to my son turning 3, the next (who we loved!) moved out of the area, wasn't a fan of the 3rd, and am pleased with our current therapist). Our first experience with the therapists from early steps were in home/school which we initially thought would be perfect, because they could see the behaviors/compulsions and help us deal. We were disappointed. They gave us more "parenting" techniques than true help for his OCD. But we did get some useful tips out of it. We made great headway with our second therapist (until she moved!) - but it was all in office, so many of the appointments dealt with her telling us how to approach the exposures, etc. Every therapist we have seen has taken the same approach - address only 1 compulsion at a time. And with Ms. Jesse (as my son called her), our first priority was his obsession/compulsion of taking the dogs out and picking up their poop (he was 3 - not an age appropriate chore, especially with 2 large dogs). This was obviously something we couldn't re-create in her office. However, when we started to address some of his food compulsions at mealtime, we brought in favorite snacks to work right in her office. It wasn't exactly the same, but we did get to see her in action. We learned enough of the skills from Ms. Jesse that we were able continue progress after she left even when new compulsions came up. Our newest therapist works primarily with our daughter - her OCD was a completely different animal. She had primarily intrusive thoughts that would bring on panic attacks. No true compulsions for us to deal with. We love him, and yes, a lot of what we have had to do was primarily done at home - with his guidance. But he did work through some exposure exercises with her and us. His biggest contribution was giving my daughter a "safe" way to communicate her feelings/anxieties (we used an anxiety "thermometer" and emotion cards - she physically carried them both around for weeks to use as visual communication until she felt "safe" enough to express herself verbally). But a majority of what we have had to do was at home. For example, the therapist never was able to observe her reassurance OCD (do you love me?) but we did discuss it, and how we should address it - in front of my daughter - so she knew what to expect as well. Therapy worked really well for us, but only when we were also actively addressing the medical issues. In the midst of a flare from current infection, neither of my kids would have responded to therapy. However, after years of "practice", we can use the techniques learned to help when in a flare. Do they work as flawlessly as when we are coming out of an active infection? No, but it does work enough to keep them far more functional than they would have been without them.

Marriage counselling is what saved our marriage. Its still not perfect, but we now have a renewed commitment to each other as well as our sick kids. My husband "got it" right away, but in my view he didn't seem to care to much. I was the one doing the research, dealing with doctors, teachers, etc. It was almost like he didn't even want to know what was going on. After over a year of the anger and resentment building (and nothing resembling our marriage left) I was ready to leave. We got into counselling, and it was a huge revelation for both of us. We learned how our different ways of dealing with the stress of pandas affected each other. For example - I have always felt knowledge is power - so once I had a name for what was wrong with my kids - I set out to learn everything I could and educate everyone dealing with our kids. My husband on the other hand, felt he had little control over the medical side and it overwhelmed him - so he tried toaintain control in his way - financially. He set to rearranging our finances, investments, etc so he could pay for whatever doctors, medicine, treatments etc I said were needed without bankrupting us. It was his way of maintaining control. That he did this without a word to me was part of the problem. What I saw as him being aloof and uncaring was really just him dividing and conquering (I handle medical/school - he deals financial). It took a third party for us to realize this, as well as for him to be able to express his feelings in a way that I could relate to and vice versa. We have had to do some very hard things to make it work - like recommit to each other. We do a date night 2 x a month. Is it hard with 2 pandas kids - you bet. But our marriage is just as important as they are. We also commit to 1 girls/boys night out a month too. A time for each of us to decompress on our own or with friends. Its important. Another point of view was shared from a guy friend whose son has Aspbergers. When his son presented with problems as a toddler, his wife struggled but he wouldn't hear of getting him screened. Later, he acknowledged that he knew all along something was wrong - but at that time he just wasn't ready to face the fact there was something wrong with his first born son. He was in such a state of denial. He said he wasn't equipt emotionally to deal with it. And I think that may hold true for lots of men.

I see you've gotten lots of good responses here already. My son has not reacted to any vaccines in the past - except the flu vax, so you are not crazy, the connection is real. As for the counting- my son also used to count, or require things to be in quantity by age. His onset was at 2 years old, but the counting came with a later infection at 3 years old, and lasted until he was 5. For him, it was especially critical with food - everything had to be in quantities of his age. We didn't eat peas for years - no way I was putting them in tiny piles of 3! While you are trying to figure out your next steps, try to give your son ibuprofen, the standard dose for his age. This may help alleviate some of him symptoms. It has been very helpful for us. It reduces the inflammation in the brain that is the root cause of a lot of the symptoms. It may give you, and him some temporary relief while you are waiting to see a doctor. As for CBT - it has been very helpful for both of my PANDAS kids. But I will caution, it was only helpful AFTER we had addressed the medical side of things. When they were at their worst, I don't think it would have done anything. Now that they are doing better, when they do get a new infection/flare, they are able to use the tools that they gained in CBT to help mitigate what they're experiencing, which makes it WAY less severe.

We have always used Ibuprofen for IVIG.

I have always found it interesting that the most common advice for family members of older folks is that if thy have any change in personality or behavior - to get them into their doctor for a full medical work up, but in our children, it's get them to the psychiatrist/pharmacy! Oh, and by "interesting", I really mean infuriating...

Both of my kids are on daily motrin. They take a single dose (for their weight) in the AM, and on school days, a second dose in the afternoon. When they are doing really well, we eliminate it. But for flares, it has been our lifesaver. It can curb tantrums quickly and make them functional. We often use it when we have events or functions to attend as a precaution. (For example, the big family Thanksgiving gathering). My son especially can get set off easily in crowds, so pre-emptively giving it can fend off (or at least minimize) something setting him off when we're there. Our PANDAS docs have both recommended it, and our ped has said that as long as we don't exceed the recommended daily dosage (which we don't), it is fine longer term. He does regular labs however on both kids to make sure everything is working just fine with ALL of our meds (kidneys, liver, etc...)

Provide a well written letter from your PANDAS doctor - that was critical for us.

My kids have done weekly therapy there (we are only a county over) and it has been amazing!!!

My non-PANDAS daughter (at the time, she is now PANDAS too) would get a 30 day course only if she tested + or showed symptoms of strep (elevated heart rate, peri oral pallor, etc...) Normally, he would only give a 10 day course to strep kids, but he always did 30 days for her because of her brother. He would swab the whole family. And at least one time, when Broderick was really bad and not getting better at all, he swabbed us all and gave us each a 30 day course of abx just to try to clear that particular flare. T.Anna, do you have a 504 in place at the school? We have it in both kids' 504 plans that they have to notify us of strep in their classrooms, and if there is a very high number of cases in the school (even if they are not in the classroom). We have to option in those cases to keep them home as an excused absence until the "epidemic" passes. They send out notification letters to all of the parents in the class 2-3 times per year reminding them that there are immune compromised kids in the class that have severe issues to strep (we are strep only triggered) and it's critical for us to be notified of any strep infection (and we list all the other things that can be caused by strep). The school has been wonderful about it, and the parents have also all been very cooperative. Some even contacting me personally when their kids is sick if they know our kids play together often.

I'll offer my story as a counter point. After doing an extensive family history, both of our PANDAS docs have told us that I most definitely had PANDAS growing up. Looking back, the pieces are all there - the chronic strep (6+ x per year until we figured out my sister was a carrier), things my parents thought were "quirky" at the time but were obviously OCD, even the frequent urination (resulting in some awkward and uncomfortable kidney tests when I was in Junior High). I even had a stubborn case of strep in 6th grade that required hospitalization and IV abx because they were worried about RF. I was never treated for PANDAS - obviously - because it didn't "exist" at that time. Sometime in college, I outgrew the chronic strep, and what I would now consider an PANDAS-type reaction to being sick. The one thing that has remained, as an adult, I was dx clinically with OCD. I (and our PANDAS docs) now thing that is a carry over from untreated PANDAS. Is it debilitating? No. I am a fully functional human being that unless you have seen my clean my house would not suspect I was OCD at all. Do I think if I had been treated for PANDAS aggressively as a child I may not be OCD today? Maybe, maybe not. I always contributed my cleaning tendencies to being lazy as a kid while my mom kept an absolutely spotless house all around us, and when I moved out I hated living in filth as a result, realizing that our dorms/apartments were never going to get cleaned unless I did it. Even now that I know about the PANDAS, I still think that's what set off my cleaning OCD. On a side note, I don't think that there has been any documented research on permanent brain damage associated with PANDAS. As a matter of fact, I think that most of the experts agree that actual brain damage is not the critical concern. Our docs have all told us, however, that the OCD and even some tics, may become "permanent" if untreated almost as "learned" behaviors. (Which is why in conjunction with the medical side, we also have done therapy with great success at breaking some of those OCD "habits" in our kids.)

I love the spoons!!! We were able to catch BNL down here in the spring. But my favorites (Moxy Fruvous and Lowest of the Low) have been broken up for a while Being from Buffalo, all we listened to was Canadian music growing up!! Anyway, we leave our kids often with babysitters - helps keep our sanity. If it's going to be an all day affair (USF Football anyone?) My parents usually take them. If my folks can't, we won't typically chance a day long outing with a babysitter. Too many variables. We have 3 girls from the neighborhood that have known them and watched them since birth - so they have seen my kids grow up and seen the transition in them thanks to PANDAS. That has helped a lot. We started by only leaving them with a sitter after they had gone to sleep. Yes, that meant some late dinners not leaving until way after 8:00, but that was our comfort level. And it was a win win, we got our date, and there was less worry about our kids trying to kill the babysitter. Then we slowly transitioned to leaving a half hour before bed, and creeping up. Finally, last year we were able to have a sitter after school 3 days a week. She had some rough days, but she had been around the kids often enough during flares just being our next door neighbor, that she knew how to handle them for the most part. We have also taken 2 of the 3 on vacation with us to help out. That 24/7 exposure also helped "train" them. Those same 2 are in college - one for her masters in speech therapy specifically for autistic children, and the other in her 2nd year of nursing school, but she has a special interest in working with children with special needs. So having them both take an interest in "special" kids is mutually beneficial. Our kids give them real "hands on" experience, and we get babysitters that are more understanding of the challenges. We were lucky to have 3 in our neighborhood that have worked out well. It is also a huge help that our kids absolutely ADORE all three of them. (My 5 year old keeps asking the 24 year old when they can get married. And don't think she hasn't used that as leverage to get him to focus sometimes...) I believe Care.com, the online babysitting match service, has special pairings for kids with special needs/disabilities. That might be a place to start.

We had this problem with my kids. Whenever anyone in the house (non-PANDAS) would test + for strep, our pediatrician recommended a 30 day course of abx minimum (if the adult doctors wouldn't write it, he would). It seemed to keep them from tossing back and forth a bit. And an additional "side effect", my dd was non-PANDAS at that time, although she eventually did have onset about a year later. When she did have onset, her symptoms were very mild and for almost 2 years cleared easily with a 30 day course of abx.

My daughter was already on her 4th strep infection of the year, which is 2 less than what they usually want to see to justify it on that account - but since she had (very mild) PANDAS and her brother, the ENT wanted to pull them ASAP. We begged him to do it when she was in for her adenoids earlier in the year, but he wouldn't do it then. My son did have reduces infections the year post-op. Down to 6 from 10+ previously. (Every little bit helps huh?) We finally found our stop gap from the chronic strep with a combo of 3 abx. He started HD IVIG every 8 weeks since April, and it's been nothing short of AMAZING.

momindc, according to our ENT, who had dealt with PANDAS kids prior to ours, IV abx (as well as post op abx) used to be standard protocol, but it isn't anymore. But he said that for his PANDAS kids, or kids with otherwise compromised immune systems, it's his standard. I know most of the PANDAS docs suggest that as well. JoyBop, we got my daughter's T&A done just a few weeks after my son's. She had a strep history (4s that year), but it wasn't enough for the ENT to pull them normally, but because of both her and her brother's PANDAS, he recommended they come out too. (She was our mild case)

Woo hoo!!!

Someone in the Florida group's daughter was just given this dx by Duke earlier this week.

We saw immediate improvement within 48 hours for my son post T&A, it only lasted 6 weeks, when he got another strep infection. (which I didn't even think was possible without your tonsils!!!) Is your daughter still on abx? We found that we have had to continue abx with my son to keep him in a good place. It may also be a time to switch abx if she is on them.

3bmom, we have gotten everyone tested, and out vet just treated the dogs for strep (2x) based on the cost/difficulty to properly test our dogs.

JoyBop - be sure to check your state laws. Some states enforce it at all schools regardless, even if they don't get federal funding. In our state (FL) they have a scholarship program for kids who have tried but couldn't be accommodated by the school district. It can be applied at any private school but the school has to follow the IEP/504 laws on the books.