airial95

Sometimes I wonder if it's just a cute quirky thing he does...but then other times I just wonder. I guess that's going to be the story of my life with PANDAS!!!

I can't give you answers to your questions, because they're the same questions I plague myself with as well. On Monday, we've just had our 8th postive swab in 20 months (not to mention the impteigo and nasal strep infections he's had...but that's another post.) He has NEVER had an elevated titre (on abx or not, postive swab and all), and he's had 3 full immune panels done and shows no deficiencies of any kind. But yet, we are textbook PANDAS. We're seeing immunology in a couple of weeks, and our pediatrician just pulled the trigger on wanting to get the tonsils out, his are very large. We all agreed to wait and see what immunology says and then make that decision. Dr Murphy told us the same thing you heard about the tonsils - it helps some kids, makes no difference in others. She doesn't recommend it just based on PANDAS alone, unless you have other reasons to consider it. My son just met that "magic number" of infections I guess to make it worth considering. Sorry I couldn't answer your questions, but thought you'd like to know that you're not the only one out there dealing with these challenges.

Thanks!!! I saw it previously, but didn't see it when I searched!!

So over the weekend our little man was just out of his mind hyper. We gave him motrin a couple of times - nothing. We actually were starting to convince ourselves (like the doctor warned us early on), that there is a possibility that the ADHD in our son may be a seperate issue from the PANDAS, and we have to be mindful of that as we're treting. Then Sunday night he wet the bed - again. He did it a few times over the last couple of weeks, but at least 2 of them were when he was with the sitter at bedtime, and they never good at keeping the kids from drinking right up until bed time - so we weren't sure. Well, sunday's wetting fit the bill - nothing to drink after 6:30, got out of bed at 8:30 to go potty, and fell asleep right after that - woke us up at 3:30 with a wet bed. Crap. I really need to stop doubting my gut (I say this every time) because I was convincing myself I was crazy and the culture was going to be negative yesterday. We usually see a ramp up in his classic OCD symptoms. Silly me!!! They keep changing as he gets older with each infection. Duh!! His new one is taking change from our change jar and putting it into a red solo cup to keep for "later". I realized last night that there are red solo cups of change stashed ALL OVER my house! Duh!! Didn't see that as a little OCD-ish??? The other weird thing he's been doing lately, and I've just convinced myself it's a phase because he's 3, but now I wonder - he changes his name every day. Each day, he wakes up and tells us what his name is that day. It's usually a favorite character (we've been all of the Thomas trans - even the girls, Phineas, Ferb, Bambi, Thumper, Flower, Bolt, Perry the Platypus...you get the point). Is this just a quirky 3 year old thing - or is this OCD related. He gets mad if you don't call him by his "name" for that day, sometimes they change mid day - but not often. Anyone dealt with that?? Anyway, when we were there yesterday, I expressed frustration to our ped that no matter what we do - he is still CONSTANTLY getting strep, and told him about our upcomming appointment with the immunologist at All Childrens that Murphy is sending us to. (Even though all of his bloodwork continues to comeback frustratingly normal). The ped said that his tonsils look HUGE, and we would wait to see what immunology says, but he's recommending a T&A. I spoke with Murphy about that a few months back and she advised that it wasn't recommended just for PANDAS, and the research on it's effectiveness for PANDAS is about 50/50. So she didn't recommend it. Now, with this being like our 8th positive culture since January 2010 (not to mention the impetigo infections, and nasal infections), and we were on 17 months of abx out of the last 20 months - I think I have to agree with our pediatrician. (We were not on proph abx at this point. We just finished a 30 day course about 2 weeks ago because my daughter had strep - son was negative at that time, but was but on a course as a precaution - totally love our ped!) Now - the main reason I'm posting - before we go down the T&A route, I'd like to hear some pros/cons, advice, etc. I've already mentioned to the ped that I would not do it unless we had pre-during and post op abx - and he agreed (the ENT may be another story though). What else should I be asking when we meet with the ENT, what about immunology??

I know it's not Canada, but it's a hop-skip-and a bridge away from Hamilton, I think there are a couple of PANDAS friendly docs in the Buffalo area. I seem to remember someone PM'ing me a few names last year when we were going up there to visit the in-laws. I'll see if I can find the PM and pass it along if anyone's interested.

My son is also young, and after reading your post, the first thing I would ask is has he been checked for strep when you were with the pediatrician last? I ask because it sounds like he might have an infection or been exposed, and our son started his special ed pre-K last week, and he tested positive yesterday for strep. His only symptoms (that we noticed at first) were wetting the bed and CRAZY hyperactivity (I seriously think someone was breaking in to our house and freebasing pixie sticks with him...no joke). We didn't see an uptick in his typical OCD symptoms that we usually do. But now that we realize he's positive, we've noticed new compulsive behaviors that weren't there before. For example, he's obsessed with money right now, he sees a coin, he must have it. He as been taking coins from our vacation jar all last week and putting a bunch in a red solo cup to have for "later". I realized yesterday after getting back from the pediatrician, that there are red solo cups of change ALL OVER my house. This is OCD in a 3 year old. The OCD does manifest itself very differently in young children, it's not the "classic" symptoms you might see in older kids, like the hand washing, checking, etc. although those things may aslo be there. It's alot of reassurance questions, repeating certain words back ("mommy, when I get on the bed and say 'blah blah' you say 'here he is!'") if you don't answer or repeat just right - the anxiety kicks in and you have to keep repeating. I've noticed in our son, a lot of his OCD also revolves around the way WE do things - repeating a certain phrase before he'll brush his teeth - we don't do it right, he's not brushing. Those sort of things. The HARDEST part for us has been deciphering what is OCD/ADHD/PANDAS related vs. just a little boy being a little boy. It's not always easy to figure out. As for the defiance, it may be ODD (Oppositional Defiant Disorder) presenting. This can also be a PANDAS triggered issue, and it's also one of my son's big things. There are times when he says no, or won't do something even if he knows it's right, or it's something he wants to do. He has even told us later he doesn't know why he says "no" sometimes, he just has to. If it's the ODD or just another manifestation of the OCD, who knows. But it sounds like your son might have some of that going on too. I would try giving him a dose of Motrin before going to school. See if that helps bring down some of his symptoms. It has helped with us. One of the other accomodations we have in our son's class is his "thinking chair". It's a chair in the corner of the room where he goes when things just get to be "too much". It has worked well for him, and it might be something you consider. Good luck!!

Yes - I think you're paranoid - but that's not a bad thing. We're all paranoid. As for drinking after the aunt, I would've responded the same way. And if she was touchy about it, that's her issue. You're doing what you can to kepp your kid helathy. No need to be apologetic or feel bad about that. Personally, I was teaching my kids not to share snacks, drinks utensils, etc...even before our son had PANDAS. In my personal opinion it's just common sense. Prior to PANDAS, we weren't as obsessive about it when the kids would share with each other, or us personally, but absolutely if it was someone outside of the four of us. Since PANDAS - we are just as obsessive as you are. Our son is only 3 and his sister is 5, so it's a job to stay on top of them and make sure they're not swapping juice boxes.

My son has the fatigue as well. He sleeps from 7:30 PM to around 7:00 AM every night, and will nap over 4 hours in the afternoon if we let him. We've found that (as counterintuitive as it may be) letting him sleep TOO much has kept the cycle going. We keep the bedtimes the same, but for naptime, we try not to let him go past 2 1/2 - 3 hours. I've found that by giving him an activity to look forward to after nap (going swimming, to the park, etc...) he responds better when we try to wake him up from his nap. He goes down for nap at 12:30 - left on his own, he would sleep well past 5:00. Most would love for their 3-4 year olds to still nap like that, but in our case I think it feeds the cycle. As for the reward charts - we use them as well, for both our 3 year old PANDAS son and our 5 year old daughter. On our 5 year old's chart it's a mix of chores (cleaning the toy room, her room, dusting) as well as behavior incentives (no backtalk, eating all her supper - she's a notoriously picky eater). Our son's has some chores, because he like to feel like the big kid too (putting dirty clothes in the hamper, picking up toys), but most are behavioral - no hurting, no potty words, good report from teachers. At the bottom of the chart, we have a post-it note with their rewards. 50 stars - Happy Nappers (it's what they wanted!) 100 stars - outing to the bouncy place for my daughter/Leapster for the 3 yr old. If my 5 year old gets 200 stars - she'll get a Nintendo DS. It's worked for both my 5 and 3 year old, so you might be able to use it with your younger one to discourage him picking up the bad habits.

You are all much more understanding than I am!!! My husband has always been "on board" with the PANDAS dx, and the various treatments, etc... However, like most of us here, he doesn't deal with it on the day to day basis, so being "on board" is great, but truly "getting it" is a totally different story. We had a similar situation early on in our path where the pediatrician said we all needed to be tested (it was our son's 3 positive cluture in 3 months, all while on full strentgh abx) as he strongly suspected someone in the house being the culprit (turned out it was our daughter). He swabbed me right there in the office, and I obviously broght my daughter back by later that day. But when I told my hubby he had to go get swabbed (either at his dr, a walkin clinic or our ped would do it) he balked - because our daughter already tested positive - that was obviously the problem. My response - I'm a mother of 2, not 3, so you have a choice, you can act like a grown up and do what you need to do for your son's health, or find a new babysitter - because I quit. He went for the culture the next day. He hasn't pushed back since!

Is that why down here in Fl it seems to be year round? Although I have to say I can ALWAYS ALWAYS ALWAYS rely on the middle of August strep and the end of January strep. Could set my calendar by it for the last 5 years. Just getting over our August bout now...sigh. We're February and July - it must start on your coast in January, migrate over to ours and head back to your coast in August!

We see Dr. Murphy, and she has told us that having his tonsils removed would not make a significant difference and there is conflict documentation about its effacacy. My son is also very sensitive to exposure. That's just what she told us. I think some other doctors do advocate to remove them - although, it may be on a case by case basis all the way around.

We have a 3 year old with PANDAS, and we suspect his 5 year old sister has the same. We strive for consistency. We made up a visual schedule with all of his "tasks" for both the morning and evening time (wake up, go potty, pick out clothes...) it seems a little basic, but it really helped with the defiance as far as not wanted to do what he's told when. He can look at his chart and do it himself. It's kept him focused. As for the violent outbursts - that was always a tough one, we tried everything. Our challenge was we didn't want to send a message to him or his sister that hitting/biting/kicking/bad language was okay just because he was sick. We would put him in his room with one of us until the violence passed (not a wonderful way to spend an evening!!) Then someone (I think it was on this forum, not sure) recommended we try a sensory swing. It's an OT tool used for kids with autism and sensory issues. It's like a lycra hammock that hangs from a single hook in the cieling. They can get it, and it sort of cocoons them. We bought one ($80 on ebay) and it took my husband over 3 months to finally hang it up. I could've killed him. The first time my son raged after the installation, we put him in - the calming effect was INSTANT!!! He stopped screaming, crying and flailing the second I sent the hammock off my lap after putting him in. (We could've had peace 3 months sooner if my hubby would've just gotten the darn thing up when we bought it!!) We still use it all the time when he's having a fit or hitting. We don't call it "time out" although, when he's in a PANDAS episode, we treat it like one. If he's raging and he hits - he has to go to his "special chair" to calm down. Works like a charm, and he's gone to it on occasion when he's just feeling "fuzzy" (his word) before rages even start. Your daughter is probably still small enough that something like that would work. It has been our absolute miracle!! Then, there's also motrin - if you haven't already, try giving her a standard dose of motrin for her age. In a nutshell, it reduceses the inflammation which slows down the immune response - which leads to less behavior issues. We don't use motrin daily, but if we start to see a ramp up in OCD or tics, we usually give him a dose - which has prevented a lot of the worst moments. Hope this helps - and welcome to the forums. It's a great place full of very supportive people with great information!!

A thought just occurred to me, we hear alot on here that our own mothers are often the ones telling us we're obsessed, or overreacting, or in our case, it's "the terrible twos" and "boys are just harder than girls". But could this be their defensive reaction as well? No matter how old we get, we are their babies still, and they don't want to see us suffer any more than we want to see our children suffer. Could it be they're downplaying what we're so worried about as a mechanism to try to keep us - their babies - from hurting? It just came to my mind as I was reading through this thread...it may make me react a bit differently next time my mom forgets to give him his meds or says "boys will be that way" (although, probably not )

It's a tough choice - but ultimately a personal one for your family. I'm in the same boat as Burnell. Our son is fully functional right now - does he still have residual symptoms - yes, particularly the OCD and some sensory stuff. But he has leard with CBT and other tricks to manage his anxiety, and bottom line - he's HAPPY right now. Which is why we're reluctant to rock the boat and do anything more heavy duty. If you would've asked me last year - it would be different because we were in a much worse place then. Our bigger issue is how often he's infected - it's constant, yet his immune system shows no deficienies (actually the opposite - on paper he's the picture of perfect health!) With each infection, we have a setback, but the quicker we respond, the quicker he comes out of the episode - with the last one only being a couple of weeks. We're just starting down the path with an immunologist reffered by Dr. Murphy to see if we can figure out why he's getting sick so often (even while on full strength abx), so we might change our approach from there - but for right now, because he's functional and happy, we're not willing to rock the boat. I know my post is about our situation and how we're handling it - but I'm hoping that by others sharing their stories and perspectives it will help you through your own thought process on how to proceed. It's your child, your family, only you guys can decide what's best for you! Good Luck!

To some extent, yes, we all are obsessed with this, but not just because it's PANDAS. It's because we're parents, and we'll do anything to protect our children and keep them from harm. Next time your mother or husband question your dedication, I would ask if they would feel the same way if it was Cancer (heaven forbid) that your daughter was fighting as opposed to something "invisible" like PANDAS? I'm sure their answer would be different. With that being said - I think that we ALL need to learn to take some time for ourselves to try and recharge from the fight. The longer I look for answers and options, the more I find myself questioning every step we take. Once my husband saw how this was running me down - he insisted on "girls night" at least once every other week. Most times it's just me and a book at Starbucks for a couple of hours, but it has worked. It's kept me in perspective and kept my "crazy" to a minimum. I know it's easier said than done, but I firmly believe that each of us taking our own "me time" if we can is actually in the best interest of our children - especially if we don't have spouses/support network that are as passionate about our crusade against PANDAS.

For the most part yeah,we'e always had good bedtime habits - started it when they were infants. In our first PANDAS episode, it wasn't happening, what with all of his bedtime rituals and all. But we broke all of those with CBT, use melatonin, and created a "visual schedule" for both kids (even though just my PANDAs son really needed it) that has kept us on track at bedtime ever since...even through subsequent episodes!

Just getting the kids showered so i'll post quick (great topic by the way!!). For our son - our biggest miracle has been his sensory swing (like a hammock hung from a single hook - it's used in OT). I think it was someone here that suggested it, but it has single handedly taken rages from hours long to mere seconds! It may or may not work for older kids,but it has literally been our lifesaver!! For us, weekly date nights - we get a sitter if we can afford it, usually after the kids are already in bed around 8 ish, and head to our favorite local place for a couple of drinks, gets us out of the house and together. That combined with alternating weekly moms/dads night out have been essential for us. I'm not going to lie, sometimes my big night out consists of me, alone, with a book at Starbucks. Nothing exciting, but essential recharge time for both of us.

Burnell -- I PMed you; you will be in very good hands in Florida! For your DD's lack of sleep, have you tried melatonin? It has worked like a charm for us for helping our DS feel restful and fall asleep. A potential bonus, also, is that it is apparently good at counteracting excess glutamate in the brain, which may be a contributor to OCD and some other behavioral issues in our PANDAS kids. So it may be helpful on more than one front. We give 1 mg. about 30 minutes before bedtime, and he's out like a light! Remember, it might take a couple of weeks for the melatonin to start working, so stick with it. You also might need to play with the dosage. There is no solid "recommended" dosages for kids, so you might need trial and error to get the right dosage. That's what we had to do, our son is on a 3 mg dose, which is high cause he's so young, but we had to keep upping it every 3-4 weeks until we found a sweet spot. Nothing less than the 3 mg pill worked for us.

I think that therapy might be useful. It has helped us immensely as we've gotten all of our son's other PANDAS symptoms under control - the OCD has just been a bit more stubborn. And yes - like your son, at this point you wouldn't even realize that anything is wrong with our son (unless he has strep) - his OCD is much more mild and he's completely functional. We have questioned IVIG for our son as well, but have been reluctant because he remits well with abx, with the exception of the OCD which lingers. My husband's case was a bit opposite of yours - he was feeding the OCD and giving in to it for my son because it kept the peace in the house - who cares if he has 3 straws in his drink if it keeps him happy right? Unfortunately, he didn't understand that it may start as "harmlessly" as having 3 straws in his drinks - but that escalates slowly but surely - to needing to have 3 drinks at all times (with 3 straws in each of course!) I found it helpful for my husband to start taking my son to the therapist appointments. (we switched weekly) He got a better understanding of what was happening, and he started reacting differently. Like you - our roles are divided in our household - he deals with the finances, I deal with the medical and school issues. So until I forced him to come to some of the appointments with the PANDAS specialist and therapy - he wasn't really getting a full picture. You may also want to consider couples therapy as well - we did this for about 6 months when my son first got sick and it really helped. Prior to that, neither of us were really able to fully address/acknowledge our fears about our son's health and future - which often came out in comments/attitudes like you describe in your hubby. Just a thought.

Absolutely a possibility to participate in the 3 wk USF program. All of the practitioners that I called here in MI were the ones listed for my area on the IOCDF website. DCMom, Does the FLA program include the parents? I ask because one of the psychs I spoke to yesterday was aghast by the fact that the prior psych did not include us (parents) in dd's sessions. We were never apprised of her "homework" other than to say she had it and knew what to do. We participated in one exposure. Now, dd was less than functional at the time so perhaps that makes it all a mute point but the one psych said he would maintain each session with all of us present. Mary from Michigan Mary, I don't know how the intensive program is handled, but my son's therapist is through USF (same folks who do the intensive program) and we are involved in his sessions.

The CBT has been very helpful for us as well. I'll echo what everyone else has already said though - when we are in the throws of a full on exacerbation/strep infection, it's not as effective. With my son, and I'm sure others here as well, we struggle with "residual" OCD - after the infection has cleared, and all other PANDAS symptoms have disappeared, the OCD sticks around like an unwanted hosue guest. In our son's case (he's still young) it's been described to us almost like a learned behavior. They perform these compulsions and rituals, or process thoughts in a certain manner initially because of the OCD, but after a while, depending on how long that particular flavor of OCD has been happening, it becomes their new "normal". He has to have 3 beverages at dinner time because that's just what you do - it's no longer solely anxiety driven - except for the fact that it's weird if he doesn't have 3 beverages. Our therapist also described it like a drug addition. You start taking the pain pills because you really need them, and have pain, but eventually you start taking them because if you don't you're afraid that you'll have pain, at which point you become addicted and have to keep taking them in order to feel good at all. It's the same with the OCD - he for whatever reason, HAS to have 3 beverages or he freaks out, he knows that he had to have 3 beverages to keep the anxiety at bay, it made him feel good, so now even if he doesn't HAVE to have 3 beverages, he remembers that it made him feel good, so he just sticks with it. We've had great success using the CBT/ERP techniques coming out of exposures/exacerbations and it has gotten us back to baseline much quicker with continued use of the tools.

We're open with him in the respect that he knows that his brain is "sick" and we know he can't help it sometimes when he does things. My husband and I normally have conversations about his progress, things we're seeing or if we need to go into the pediatrician after he goes to bed, but you're right we may do it more often than we realize. We're fortunate, our son actually LOVES going to the doctors. His doctors (the pediatrician, Dr. Murphy, his theapist), are some of his favorite people, and he actually looks forward to going to see them - even if he knows he's getting shots/blood drawn or a throat culture. I'm not sure how we managed that - but I'll take it. It's a good suggestion though - and I'll have to keep in mind how often we talk about his issues in front of the kids! Thanks again!!

Thanks for the support!!! We do have a trikier road because we constantly have to question what are symptoms and what is just "normal" for a 3 year old little boy. It's the main reason we waited 6 months before taking him in for any type of dx because everyone had us convinced that there was nothing wrong, it was the "terrible twos" and it was worse than it was with my daughter because "boys are harder". I wish we would've trusted out guts more then, we would've been getting help sooner. I think we've tried to keep our own path, and not get too wrapped up in what others are doing. It's our mothers instinct to want to do everything she can to protect her children. Deep down I know we're doing that, but it hits the hardest when you have this sweet little man saying he want's to get better. I'm just thankful for all of the love and support of others going through it that I find here!!! I don't know what I would do in moments like that without all of you!!!

Thanks so much for the support. He's been doing well, which is why I was so blindsided by his comment. My husband is telling me the same thing - we are doing all we can. And he is doing better than most. I think what really got to me is it was the first real glimpse I had as to how he sees things. Since he's only 3 1/2, we thought we were doing a good job of trying to keep his life as normal as possible - still letting him go to birthday parties, doing fun things (even when it's a challenge) to try not to let this take over his childhood. I guess we weren't shielding him as much as we thought we were!!

We have my sons PANDAS as under control as one can get it. He's not completely cured, but he comes out of every episode quicker and quicker and the CBT is working on the residual OCD. Our bigger issue is how often he catches strep. (we see immunology on the 26th - thus far all shows normal on his labs). He responds well to abx for now, and because he's only 3 we've not thought about going for IVIG or PEX until he's a bit older if he needs it. We thought we were doing well. We're on a 30 run of abx because his sister had strep 3 weeks ago, he was negative. This exposure was mild in symptoms, even by our normal exposure standards, but it has lasted longer. Mostly emotional lability, some of his OCD has resurfaced, but not all of his usual tendencies, some biting and bedwetting and interrupted sleep patterns. Last night he woke up at 4 am, played for a bit in his room and then said he felt "yucky". I asked hats wrong, he said his "head felt fuzzy" (a common phrase when he's having an episode) and his tummy felt bad. As he's sitting on the potty, he looks up at me and says matter of factly "I want to go far away where I don't get sick anymore and my head doesn't get fuzzy". My heart broke. I reminded him that daddy and I love him, and we're working very hard with all of his favorite doctors to get him better and we'll never stop trying. When I got him back into bed, I crawled into mine and just sobbed myself back to sleep. For the first time in this whole ordeal I questioned why God would do this to such a beautiful little boy, which is unlike me. This morning, I find myself no longer questioning God, but myself. Should we be going more aggressive even though we've been "managing" things well? Are we cheating him somehow, by not trying harder? Are my concerns about his age a cop out? He's functional now, and has been for almost a year, even with infections and exposures under out belt in that time. I thought we were doing well, and after hearing him say that, I'm filled with doubt and fear like I haven't felt since we started this journey! Any words of advice or support?