airial95

We've not gone to Dr. K, as we have a great pediatrician and have Dr. Murphy locally (and covered by ins!) so we're not on that path... But as far as seeing your local ped first, I agree with Dedee, it depends on how open minded they are. It may be helpful to see them first and have them order all of the relevant bloodwork/labs, etc... ahead of time so Dr. K has more information to work with. Other parents who have seen him previously may know what lab orders he normally gives. I would think this would be helpful to do before hand, especially if you're travelling to see him...you'd want to make the most of your visit. Just a thought. As for the motrin, we have always used it sparingly, and only have done a daily dosing for a couple of days at a time, when he's having a full blown strep infection. I've always been concerned about the long term use, but found it has been just as effective for us when we use it as needed. Take my thoughts with a grain of salt if you will though, since our son is only 3 1/2, and the level of daily functioning needed is far different than that of a school age child...

I know several others on here have experience with allergies being problematic for their children as it relates to PANDAS, I think Vickie has often said that was a challenge for her...but I might be confusing her with someone else...

dcmom - for religious exemption tell them that the flying spaghetti monster is against vaccines because it upsets the balance of the meatballs (Just kidding! ) I agree that if you have to use the religious exemption on moral grounds go for it...you have to do what you have to do to protect your children. On a side note - have you considered contacting an attorney? I know that might be a costly avenue, but it's worth a shot. Possibly the ACLU might have some insight. This seems like just the infringement on personal liberties that they are likely to take up...especially if religious exemptions are denied you as an aethiest, etc... There might be an angle there that might work...

The closest we've gotten back to "normal" since our first exacerbation(5/2009) and dx (1/2010) is somewhere around the 90% mark. Although, our son has been on abx for 15 of the 18 months since his dx (varying doses) and he's still managed to get strep at least 8 times (4 positive cultures, 3 impetigo, 1 nasal). He improves significantly each time, our bigger issue at this point is the constant re-infections that we're always fighting. Just as we get close...BAM infected again!!! Our residual symptoms have always been OCD in nature, and some seperation anxiety. We've been using CBT/ERP therapy to counteract that, and it has helped (when he's healthy). It's been explained to us by the various members of our medical team this way - our son is so young, (only 3 1/2), and kids are forming so many new neural pathways every day, that the OCD compulsions/anxieties become "normal" for him. For example, stopping to line up all the trains as we leave day care was a huge compulsion for us - if we didn't do it, he raged until he fell asleep at bedtime. As he got better, he still needed to do this every day - the axiety level wasn't there, he just knew that he ALWAYS lined up the trains when he left school - like washing your hands after using the restroom, ingrained behavior. He didn't know why he did it, just that he did, and if he didn't he remembered feeling bad. (Like a drug addict, the drug no longer makes you feel good - you just take it to keep you from feeling "bad".) The CBT/ERP have been very helpful in getting us from the 80-85% recovery we were at, to 90%+ and still improving - until another positive strep test in Februrary, and 2 impetigo infections and nasal infections in the subsequent 3 months... While we've taken a step backwards with therapy with the latest infection, it has given us tools to continue to use, and we've even been able to tell when he's been on the upswing because the techniques don't work AT ALL when he's in full blown exacerbation, but seeing one of the therapy techiniques work on an OCD behavior that we had already tackled (that comes back with exacerbation) is one of the first signs we see now of healing...even quicker than some of our other signs. We were lucky to find a therapist who understands PANDAS (she's out of the Rothman Center where Dr. Murphy and Storch are located), but even one that specializes in OCD might be helpful...

W presented with our first exacerbation with no tics whatsoever. It was at the time of his second strep infection that he presented with a tic...he now has 3 total (although only 1 at any given time), and they are all facial movements - which if you didn't know my son or what to look for, you wouldn't identify them as anything unusual...

I can't offer any magic word of wisdom, but can and will offer all our hope and prayers,

Apparently corn dogs are the magic food. They seem to be the only thing that isn't offensive somehow. So guess what he's been eating the last few days! My husband gave me my belated mothers day gift today...a morning alone by the pool with fresh squeezed mimosas, followed by a pedicure and massage and quiet dinner alone this afternoon. I'm loving it!!! (I'm posting from my iPad - poolside). As he was packing upnthe kids this morning for a day trip to Dinosaur World, I noticed him packing sandwiches for him and my daughter..I asked "what about bummy?". His reply - "I'm stopping at sonic and stocking up on corn dogs for the day...that should keep him happy." It's been a very rough week, so my day off couldn't come at a better time...I just hope they have a good day too.

Thanks so much for all of your support - we may have made it over the hump - I'm keeping my fingers crossed. On Tuesday I asked him what he wanted for dinner - he said McDonald's - so I jumped on it. We got to McDonalds - it looked promising, he had a couple bite of his cheesburger, and then it went down hill - FAST! There was a very offensive french fry - I don't know what this poor french fry did to earn his wrath - but it must have been bad, because he proceeded to throw his entire happy meal on the floor and started crying and screaming. I quickly packed everyone/thing up and got out of there before someone called the authorities. No dinner again. Yesterday, I was taking a client to the Tampa/Boston hockey game, so our old nanny came over to babysit - I told him what was going on and that I was going to try to make him eat, but it was unlikely, and if he didn't eat it was okay. Again, I let him choose what to eat - corndogs and mac and cheese (I know, not exactly healty - but at this point if he eats I'll be happy). I whipped it up - not only did he eat, the nanny said that he had a second corn dog and more mac and cheese as well. I don't know if he finally ate because he was starving, because the nanny was there so it was different somehow or what - but I'll take it. This morning he asked if he could have Spaghetti-O's for supper tonight. Guess what I'll be stopping at the store for on my way home from work... I feel bad feeding him "junk" - but right now I'll just be happy if he eats anything!!

Thanks for all the support, he is eating at school, although not as much as normal since it's been a bit of a struggle there, so I'm not too worried about malnutrition - YET. I think he eats at school more because the other kids are too - so it's almost like a peer pressure type thing. At home, that's another story...I'll let him pick his dinner tonight and see if that helps, but even with that, he usually chooses, and then finds something wrong too. Vickie - my son likes his food cold too - and every night at dinner one of his "rituals" is to put his plate in the fridge to make it cold - even if it doesn't need to be.

As you may remember from my post last week, we have strep again - this time in our nose, so we're in a bit of a flare up. We've always had food OCD pretty bad, and this time is no exception. He eats breakfast at school, and all last week his teacher said that they had struggles, they were eventually able to work through, but it was a struggle. This weekend, he wouldn't eat breakfast on Saturday, so I took him to Sonic for an early lunch (it's one of his favorites), and was able to get him to eat, but that was all he ate all day Saturday. We couldn't get him to eat dinner (probably about day 3 with no dinner) - when we tell him there'll be no snacks, that's no incentive, so we know it's the OCD not just a 3 year old not wanting to eat his supper. Yesterday, all he had was one piece of pizza and a pice of birthday cake at a birthday party we went to. (Wouldn't normally have taken him in his current state - but her parents know about Broderick's issues and are big supporters of trying to live as normal a life as possible since their daughter is diabetic and they deal with "normalcy" issues too.) We had a couple of little speed bumps even eating that, but we were able to work through it by eating a sitting a bit seperate from the group and the promise of playing in the splash park with the rest of his friends afterwards. Dinner was a no go again yesterday, and he didn't snack at all either. Tonight - same deal, couldn't even get him to the table. I finally got him to eat a few bites of chicken, but he chewed them and spit them up (in an straight,even line of course) next to his plate. When I tried to clean it, it spilled over into a breakdown which lead to a battle royal to do his medicine regiment. I got him to bed about a half hour early because he was raging, hitting, etc...and I was able to convince him bed was a better choice - thankfully, he was actually asleep in a few minutes. If we just leave him alone and don't make him try to come to the table and eat, there's no meltdown. And with my hubby out of town (yet again) this week, that's a very tempting option, but tough to do while trying to get my 5 year old to sit and eat while her brother gets to sit on the couch and watch TV. I also know letting him go goes against what we're trying to do with the behavior therapy too - but I can't help but think that especially since I'm alone this week and he's fighting strep (AGAIN) - it's about survival right??? At this point I'm not totally worried about him being hungry, since I know from his teachers that he is actually eating some at school - not as much as normal, and it's a challenge, but they are getting him to eat. He's been doing fine with snack at day care after school - probably because he eats that by himself since he gets there just after their normal snack time so he can do whatever rituals he'd like. So at the moment malnourishment isn't a HUGE concern (although I'd be lying if I said I wasn't worried at all - he's already too skinny) I guess what I'm looking for is some validation and support that it's okay for me to pick my battles, even if it sets our ERP back a bit, just to get through this week???

Not yet - but I emailed Murphy's office again this morning, and should be talking to them later this week to get our latest blood results...I'll ask again.

That's interesting, since my son started with the OCD at such a young age (2) I always wondered what the role of obsessions played in his behavior, I always saw it more as the action/compulsion being the driving force. Even now as he's getting older, he can verbalize that his "brain tells him" to do these things, but when you ask him why, he'll say "I don't know, they didn't tell me that".

So as everyone knows, we're fighting strep - again. It seems a never ending battle in our house. Bummy has been very "rage-y" all week so no one was really looking forward to this weekend. But today has just been a roller coaster. I slept on the couch last night with the dogs (my hubby has the cold we've been passing around now so I wanted to make sure he slept well). Bummy woke up around 6:30 this morning, curled up next to me, snuggled in and out of no where just said "Mommy, I love you." Not exactly the wake up I was expecting after this week. Then he played well with his sister most of the morning and I was amazed. Then it came time to get dressed so we could go to the store. He wanted to do the grocery shopping with me, so he had to get dressed. it took 45 minutes. Our socks weren't right, had to take them on and off a million times, went through every pair of underwear in his drawer before he found the ones that weren't broken - I was not looking forward to taking him out, but since that cat was already out of the bag...once we were FINALLY dressed, off we went. He was an absolute ANGEL at the grocery store. Very polite and helpful - not the same kid from back at the house a few minutes ago. He then had another meltdown in the parking lot as we were leaving - honesly, I have no idea why, something about how his sister was getting in the car. He screamed the whole way home. When we got home - a switch flipped again, and he wanted to be "a really useful engine like Thomas" and helped me carry in and put away all the groceries! After which, he went to take his nap like it was nothing (he's been sleeping almost two hours now - thankfully he's still a good napper, I can always count on that time to recharge a bit!) It's just been so up and down switching between being sweet and being satan. It's just so exhausting!!! I'm sitting here wondering who I'm going to get when he wakes up!

I was curious at what age some of your kids had IVIG done. I know it's an option that we've already discussed with Dr. Troufexis, but my husband and I haven't seriously considered it just yet because our son is only 3 (and only 32 lbs!), and we're just scared he's too little. I was curious what the youngest anyone has had any experience with it was. Thanks

Our pediatrician has always pushed honey for coughs...and it works!

We've also used altabax in the past, but our doc prefers muciriprin for the nose application. Thenmama, He did just try a rapid culture up the nose. He really is a very forward thinking and progressive doc. We are very lucky to have him. He doesn't look at me like I have two heads when I come in for a strep check because we're acting weird (and I think I've been right like 75%+ of the time too!!) Dr. Troufexis (from Murphy's office) is expecting a child in the fall, and when we were at our last appointment and I told her that our pediatrician automatically wrote a 90 day rx when he tested positive for strep last time - she was amazed. She started asking all kinds of questions about him, and then asked for his detailed info since she's looking for pediatricians, and where he's located would work for her - would we give a recommendation? Uh - Heck Yeah!! I couldn't help but think how amazing it would be if one of the Dr.'s from Murphy's office because a patieint of our pediatrician? I'm just imagining the brain-trust conversations going on!!!

Hmmmm....my PANDAS son has a ridiculous sweet tooth - but we just always thought he took after his Abuelo who is just as bad...maybe his body knows something we don't!!! Ironically, once we discovered his sweet tooth had no limits, we started buying the Voortman cookies with Omega 3 in them (the oatmeal have 750 mg per cookie) and keep those within easy reach. He thinks he's "sneaking" treats, but actually, we're "sneaking" his Omega 3 intake without him knowing!

We did our first round of bloodwork right around 3, but it all came back normal - and he had an active strep infection at the time (positive culture). So I don't know how useful it really was. We just ran another set yesterday, and then found out he has strep again (this time in the nose), so it will be interesting to see how this round comes out.

It was the Dr's suggestion. And it wasn't the first time he had us do it. When we first got dx and put on abx, he had us doing that as a precaution, and had us swabbing up the whole family with it too - just in case. He told us today that we're doing everything "right", but if we see flare ups in the future, at the first sign start with the muciriprin and get aggressive with it - it can't hurt. Just another trick for the arsenal!!!

He said that doing a culture on the nose won't be particularly accurate, since the test wasn't designed for that, so a negative there wouldn't really mean anything. But that strep likes to hang out there too...

Our pediatrician believes that PANDAS could fall on the "Spectrum", and that it's possible when you hear of cases of folks "curing" Autism, it could be PANDAS, or something similar - finding and treating the root cause of the symptoms. Like peglem said, autism is just a definition of a collection of symptoms without recognition of the cause. We too were headed for an Aspberger's dx but PANDAS treatments have eliminated all indications of any sort of autism. Good luck with your treatments.

CBT/ERP has helped us tremendously. One of the unintended benefits is that it has helped us notice when we might be actually dealing with anew strep infection. Our son responds exceptionally well when he's well, or on the back side of an infection (getting abx, etc...). However, when he's exposed to strep or has a new infection, the effectiveness of the CBT/ERP is limited. Our therapist is from Dr. Muphy's office, so she understands PANDAS and said this is to be expected. When their brain is under attack, those techniques might not be as effective. It was helpful this week when none of our dinner techniques were working for his OCD - and bam - found out this morning he has strep. We have continued therapy even during exacerbations -just for consistency and becasue it does help a bit. As for costs - you might be able to find a therapist through the local university. Our "Miss Jessie" is still working on her PhD, but she works under the direction of one of the docs at Rothman, and we do see him all the time, almost every appointment. She is WONDERFUL, open minded since she's still a student, and the difference in cous tof us is $150 per session vs. $35 per session (it's out of pocket for us too.) Just a suggestion.

We've been doing really well. We were off abx for about 6 weeks over the holidays, and then in mid February he got strep. We caught it VERY early and had him in for a culture within 48-72 hours of seeing the very first odd behaviors. AS a result, combined with our behavior therapy, the episode wasn't as bad as it could've been, and we managed well. Our pediatrician - who is AWESOME - put us on a 90 day course of full strength Cefdinir. We still have about 8-9 days left. Over the couse of the 90 days, he got a couple of little pimply things that could've been impetigo, the were accompanied by bumps in the behavior. We added the topical abx and were back to "normal" in about 24 hours. Thigs have been going good. We felt like we were somewhat in control. Last week we saw a pretty significant ramp up in behavior - mostly rage - and we had a "tantrum till we drop" which we haven't had in a while. But he had a pretty bad cold at the time, we treated the cold (didn't go to the doctor since we didn't see any of our "Slam dunk" strep behaviors) and we saw improvement in the behavior. On Monday, he had 2 potty accidents at school, and threatened another little boy to "shoot him dead" if he came near him. We've never heard him say anything like that, and he doesn't even have any toy guns he plays with. It's gotten worse every day, severe seperation anxiety during drop off at school, rages and violence with his friends at school, the OCD at mealtimes (our worst) has been so bad he hasn't eaten dinner all week. This morning, ironically, I had to take him for a blood draw that Murphy's office ordered as a follow up and first step toward an immunology referral. But since things were wierd I took him into the pediatrician as well. I thought - NO WAY is this strep. He's on super dose abx (his higehst dose EVER). I'm just crazy and over reacting. He started checking him out - rapid heart rate, indicative of strep. Asked if he's had nose bleeds - nope - then shows me this like pattern of "Stuff" up his nose - all I can say is that it looked like really fine boogers caught in really long nose hair (which he doesn't have) He cultured it (wasn't sure it would work since the culture isn't designed for that use but why not) - very very faint positive. Even with out the cultrue, Dr. says - that's your infection - strep - wouldn't be caught by the cefdinir because of where it is. Muciriprin up the nose 3x a day. SERIOUSLY!!! I called the school, and his special ed teacher said to bring him in. We're trying to work with him to deal with school when he's at his worst and she said if he's not contaigious - we should keep his shcedule as normal as possible. I sort of agreed - but the seperation anxiety was TERRIBLE - but the school support was great. Instead of going to work - I came home and just cried myself to sleep (the nap was kinda nice). It's like 3 steps forward 2 steps back with this nonsese. I can't take it much more. We're so blessed with a great support system - wonderful pediatrician, Dr. Muphy is local, the school AND day care has been supportive and fantastic. So I know I have it better than most, but it still hurts to see him suffering in his own little body. He so young, and so small, I just want to protect him and feel so helpless. So moral of the story - if your culture comes back negative but all other signs point to strep - try a topical abx lightly applied inside the nostrils - the strep might be hanging out there!!!

So sorry you're going through this. I agree with what everyone else has said, get to an expert ASAP. In the meantime - when your daughter is showing strong symptoms, try giving her a dose of motrin. I can reduce the PANDAS related inflammation and help the immediate situation. We can get to almost back to normal with a standard dose of motrin during the bad times. IT's a band aid fix at best - but it's a great tool in the arsenal, especially while you're waiting to get into Dr. K. Good luck!

Heather, Your story could have been ours. Our son will be 4 in October, and had his first episode at 19-20 months. We didn't get dx until 26 months because everyone convinced us it was just the "terrible twos". Not the case - so you're ahead of the game as far as realizing that something is not right and this isn't just a phase. I think it's a bit harder for the little guys, particularly with the OCD because they don't have the communication skills that would let us parents know we're dealing with OCD - they just have a tantrum and we're left trying to figure out why, how to fix it, and how to prevent it from happening again!! It can be exhausting!! You've found a very supportive group here, and there's alot to learn from all these amazing parents on this forum - they've taught me so much and they're always here to lend support when you need it. Let me give you a few tips that I haven't read her yet (unless I missed them) 1 - it may take a few round of abx to get the strep under control - don't be afraid to ask your doctor to renew 2 - it might take some trial and error to find the antibiotic that works for your child. Ammox is not typically one of the more successful ones for PANDAS kids - you might want to try Azith or Omnicef for the little ones. In know the older kids have had luck with Augmentin - but I can't recall seeing anyone who's used it on kids our boys age. 3 - having bloodwork done and titres drawn is a standard course of action, but from what our medical team has told us, in children as young as ours were at onset - they are notoriously unreliable. The immune system is still to young to get accurate results. We didn't have our first set of titres run until almost a 12-15 monhts after onset because of this. (This opinion was shared by our pediatrician as well as Dr. Murphy - one of the PANDAS experts mentioned on these boards.) I caution you on this because there are several practitioners out there who insist that if there are no elevated titres it can't be PANDAS, so I don't want you to get bad blood results and be possibly sent down the wrong path. My son is a textbook case - confirmed by one of the experts - and has NEVER had elevated titres, even with a positive throat culture. And last - but certainly not least... 4 - MOTRIN MOTRIN MOTRIN. Many parents on here have reported that giving their children motrin/ibuprofen has gotten great results. The reson is because it reduces the inflammation in the basal ganglia causing the issues. I can say that for our son - it is nothing short of miraculous. When he starts acting out, a normal dose of motrin for his age/size and 15 minutes later we have a different kid. I wish you the best of luck, and your family will be in our prayers. Feel free to PM me if you'd like to chat in more detail. Just know, you're not alone.