airial95

I'm going to second what Emily has said about getting them to listen to their bodies. I have lots of "normal" allergies - dust, grass, etc...) but I have had a lifelong very severe allergy to cats - for me it starts with eye irritation - not really an itch, but a feeling like there's an eyelash in my eye - followed by the ichy nose & throat, and then slowly swelling to where I can't breathe. I also came up negative on the allgergy tests that were available at the time when I was a child. The severity of the attacks made it obvious that I was allergic to cats - but yet I tested negative for all pet allergies. I'm also not allergic to any other animals - just cats. (When I was a teenager an enzyme in cat saliva was found to be an allergen...likely my issue - but unknown back then) My doctor's approach at the time was similar to what others have said - avoid cats and pay attention if you react to other stuff. My mom was given prescription medication to administer immediately in case of emergency (don't remember what it was)and told to call 911 if needed - this was the 70's and epipens weren't available. We soon discovered that I was also allergic to a rash of syntheic chemicals in everything from some plastics, perfumes, candles (the coating used in some), and ironically - kitty litter (double whammy there!). By knowing that when I got "that feeling" in my eyes meant I might be reacting to something - it helped us identify some specific culprits (I won't go into the emotionally scarring experience of having to carry around just Cabbage Patch Kid shoes for hours in public to see if it was the dolls or the shoes I was allergic to....it was the shoes.) - but it also helped us identify when I was starting to react so we could act preemptively - before the severe reaction set in. As an adult - I'm still pretty darn allergic to cats - but I've outgrown it to the point where I can at least visit someone's home who has a cat for a short period of time without having to medicate. I also know my progression of symptoms well enough to know when I'm pushing the limits as well. Since I was a child - I've had only 1 close call, when I was visiting my in-laws when my husband and I were dating, I woke up in the middle of the night struggling to breathe - I immediately ran to the room where my husband was sleeping and woke him up - not able to really speak and he rushed me out to drive me to the hospital. By the time we got halfway there - I was breathing - although it was still hard - but the swelling had recinded. Turns out - the blanket he gave me to sleep with was his the cat's favorite blanket to sleep with. I always medicated before I went there and kept medicated during our visits...but basically sleeping with the equivalent of the actual cat on my face was no match for my preventative measures!! To this day - I insist my husband was trying to get rid of me...

It's the elastic thing that freaks my kids out too...every time. My 4 year old is always great, cooperative, chatty with the techs...until they trip to put that darn elastic thing on. Now - that's what we talk the most about on our way there - as a way to prepare him for it...doesn't work though. I might have to try the incremental rewards too!

One thing I noticed about your post is that you said you gave her her zith and the probiotic at the same time? My understanding is that you should space the abx and probiotic a few hours apart from each other. If you're giving them at the same time, maybe it's diminishing the effectiveness of the zith?

We're flying into Newark and taking the train up. All 3 NYC airports are within a reasonable drivinf distance and according to his office, they're 3/4 of a mile from the train station which can take you from the city. We found flights into the city were more flexible, cheaper and had more optiins (JFK, LaGuardia, and Newark). We go Monday - I'll let you know how it went!!

He had a great day! The teacher (who knows both of my kids and their issues well) said he was a model child yesterday! I'm glad he's having fun and I hope it lasts!!

Our appr is at 10. I hope he doesnt run too late b/c we have to catch the 3:20 train from Darien to catch our flight home! I hope 5 hrs is enough time.

Welcome, sorry you had to find us, but you'll find a lot of great support here! There are several folks on here whose kids are PANS that is caused by myco p instead of strep. My kids are classic PANDAS - reacting primarily to strep. With both of my kids - they do not show ANY outwardly noticeable physical symptoms of the infection. No fever, no sore throat, no upset tummies - nothing. You wouldn't know they were sick. They get purely PANDAS symptoms. The doctor can sometimes see some signs of potential infection (elevated heart rate, circumoral palor, high white cell count in the urine) - but nothing that the average person can see - or that the kids would complain about. So I would answer your question that yes - it is possible, and often common - for kids with PANDAS/PANS to show no outward signs of infection (other than the PANDAS symptoms) even if they are sick. I should also point out that neither of my kids have ever had an elevated strep titre - even when the rapid and cultures came back positive. You might want to try giving your daughter some ibuprofen next time she has a flare. For PANDAS/PANS kids it often helps lessen the severity of symptoms. It reduces the inflammation in the blood brain barrier which helps prevent/reduce the antibodies from crossing to the brain. You could try that as a very un-official, un-medical test as well. If the ibuprofen doesn't work it doesn't necessarily mean it's NOT PANS, but if it does show improvement - you got a pretty good indicator that the problem may be infection/inflammation based. For my kids - it's night and day when we slip them a motrin. Hope some of this helps! Good luck!

That's wonderful!!! Dance was a huge part of my childhood - and really helped me work through a lot of the anxieties I had growing up. It was also a wonderful place to make friends outside of school - which I think is important for our kids because school can be so challenging for them. Way to go momma!!!

With his special ed pre-K out for the summer, we faced a decision on what to do with our PANDAS kids - our son especially - he's been doing fairly well, even though he's still getting strep (just again this last weekend!) We didn't want to put him back in day care full time because being around 30 4 year olds was just asking for trouble in many ways - but still wanted him to have social interaction. So we opted for 2 days a week. Now, for anyone who remembers our story, you'll remember that in the beginning of our journey drop off at day care was one of our daily nightmares. Between the seperation anxiety and the OCD about his breakfast - I rarely got out of there in under an hour, and it was hardly ever with out lots of axiety, tears and meltdowns - for both of us! This morning, I barely got a wave goodbye as he settled back into his old life. He got his breakfast himself and just waved as he ate. I was in and out in less than 10 minutes!!! I cried when I got in the car because to think that he is having a flare right now (albeit milder) and drop-off went that effortlessly just made me thankful for how very far we've come! We're not at the finish line yet - still trying to get back to 100%, but last summer I wouldn't have thought a morning like this was even possible!

How is he working with other doctors? We have an AMAZING pediatrician on board, as well as Dr. M who are willing to instirute protocols/consult...etc?

How is he working with other doctors? We have an AMAZING pediatrician on board, as well as Dr. M who are willing to instirute protocols/consult...etc?

We're tavelling from Florida up to CT to meet with Dr. B for the first time next Monday. We have been a patient of Dr. M's for 2 1/2 years, and after all this time, while my son responds well to abx and is "manageable" (but not 100%) with them, she is at a loss (as well as all the local docs she's referred us to) as to why my son continues to get strep - we're now up to 5 infections since the start of the year! Yippee!! We've covered the basics - getting the family tested, even treated the dogs and did a full house disinfect when he got his T&A in November (only time he was 100% was for 6 weeks post op!). ALL of his labs and blood work are maddeningly normal - look like they are from a completely different kid's medical files. Now - that being said...my husband and I are doing a "date night" tonight to sit down and go through our checklist of things I need to review with the Dr - write a history, and write out my questions. For those of you who are familiair with Dr. B; or our story - any tips or suggestions as we prepare for the appointment? Should I bring my PANDAS daughters records too - eventhough he's not seeing her?? My son showed signs of strep again this weekend, so it's going to be fun travelling - but he likes to go and meet different doctors, and seems actually excited about the trip. So hoepfully he'll do okay. But if you see a news story about a little boy getting kicked off a flight from Tampa to Newark this weekend...you'll know who it is!

If you need a break abd want to grab dinner or something, PM me I'm just across the bridge!

We did a 10 day course of rifampin to boost the last 10 days of augmentin. We were able to keep him off abx for close to 6 weeks - with one 15 day run of azith for a myco p that didnt cause much of a flare. We had been doing well until last week. Got a call from my daughters teacher saying there was strep in the class and then ahe texted me 2x that day about anxiety related meltdowns. So off to the ped, and she was positive! My son tested negative, and has neen doing fine...until last night. We saw some hyperactivity increase the last few days - but it was the last week of school so theres been lots of cupcakes, candy etc... happening everyday. We hadnt seen any of his typical OCD creep out, so we thought we were good. Last night the ODD started coming up, in addition to the hyperactivity. He got a spanking (something we rearely do, and only for life threatening situations) because he darted out into the parking lot and nearly got hit by a car. (If it wasnt for my screaming, the car wouldnt have stopped. It was raining like mad amd she wouldnt have seen him). Then this morning he came into our room and said he wet the bed. Thats our biggest strep tell...so here we are again!! Luckily, our ped wrote me an rx for cefdinir for him when i was there with my daughter last week to fill jist in case. Guess Im off to the pharmacy this morning!!

I can't answer 1 or 2 for you, but as to 3, I have 2 kids - both have PANDAS. My son was a severe, sudden onset at 19/20 months old, with dx at 26 months. My daughter, more subtle onset (so we thought - turns out her OCD is more obsessive throughts with no outward compulsions) at around 4 1/2, with dx at 5. I think it was Dr. M in one of her papers that made the connection of high incidence in siblings - particularly in families with a history of strep, rheumatic fever, or autoimmune disease. I think the correlation was even stronger if the history was through the mother. I don't remember much else - I'm not one of the scientific types on here that follows the papers (sorry ) but I do remember the bit about the mother particularly because I had a history of chronic strep as a child (looking back - likely PANDAS), and have a autoimmune inflmatory condition (similar to arthritis, but not quite) that is genetic. That part of the study resonated with me because it jacked up my Mommy guilt - I'm the reason the kids are sick!!

I have impulse control problems with both of my PANDAS kids, and it is hard to tell what is my son being a typical 4 year old boy, and what is PANDAS. With my daughter, it's more clear, when she's having a flare, her teacher reports that she can't stop just calling out in class - often answers or things that are lesson related, but also completely random and unrelated thoughts - again, like she's missing the filter. I think the thing to remember is that the basal ganglia does play a role in impulse control - and that's the area of the brain that is basically under attack in our kids. So it makes some sense to me that impulse control goes hand in hand with our PANDAS kids.

Everytime we draw blood for my son we ck the liver and haven't had any issues so far. Thanks for the milk thistle suggestion, I'll look it up and ck out if adding it to our daily regimen as a precaution makes sense! I should also mention that we do supplement daily with Omega 3 and eat lots of O-3 fortified foods (the smart balance milk, butter, Voortman makes a GREAT chocolate chip cookie with 750 mg per cookie!) to help manage inflammation, but we haven't seen the results with just the O-3 that we have with ibuprofen.

A few months back, our pediatrician mentioned some obscure study that postulated a chicken/egg theory about our kids relating to the inflamation of the blood brain barrier, basically implying that by managing the inflammation long term, maybe the strep won't hit as badly. It was an interesting theroy, and with Dr. M's support, we started daily dosing of our son with ibuprofen - careful not to exceed the recommended daily dose. Initally he was taking it 2x a day, in the morning, and again in the afternoon about 8 hours later. He still got strep with this regimen, but each episode was less severe than in the past. His last bout with strep was in late April, and we added a rifampin boost to the augmentin. With the exception of a myco p infection last month that only saw a very mild rise in symptoms...he's been fairly stable - about 85-90%. We now only dose him once a day - in the AM, and occasionally if we see an issues arising in the afternoon - but typically, if we see anything, it's around dinner time, which is only about 60-90 min before bed - so we just try to ride it out. Anyway - on Friday we got a call from the school that there was strep in my daughters class and that she had 2 emotional meltdowns that day in school - off to the ped, and sure enough, she was also positive. My son tested negative, but the ped wrote us a script for abx just in case he took a turn over the weekend (which we haven't gotten filled). He told us to keep up the ibuprofen regimen - as it seemed to be making a noticeable difference in my son's overall behavior. Now - my son has been a proverbial canary in the coal mine - he reacts VERY strongly to any sign of strep - and we have hardly seen a blip on his radar - maybe dropped to 80% from 85%. Not sure if it's the daily regimen of ibuprofen, but we've been having a good run even with muliple strep infections. Just thought I'd share our experiences thus far, it has made a difference.

Take a step back and look for other ways your husband is able to help. in our case, I was just as frustrated as you were that my husband didn't seem to want to learn every little scrap of information that there was to know. He didn't read the websites I sent him, he wouldn't read Saving Sammy, etc... He reacted the same way your hubby did, and to me it seemed like he just didn't care. Little did I know at the time, that the few things he DID hear me talk about were how much IVIG and PEX may cost if we needed to go down that road. He didn't care what they were, or how they would help - just the $$$. What he started doing was rearranging our finances and investments so that if need be, we would have funds available quickly to cover it without bankrupting us or completely trashing our retirement. I wasn't aware of this until well over a year into our journey and he shared with me how far we were from our PEX "goal" (a goal I didn't even know existed!!). He looked at it with a "divide and conquer" mentality - I had the medical end covered, so why should he waste his time and energy there - when he could focus on other ways to help. Eventually, he's been able to pick up on the symptoms in both of our kids just almost as well as I can, but it's taken him a long time to get there. Not because he didn't care or didn't want to hear it - but he felt it was a wast to duplicate efforts. Men think differently than we do, and had he TOLD me about what he was doing behind the scenes financially, I may not have been so frustrated that he didn't seem to care what was happening to the kids. Because he did - just in his own way. Maybe you should look for other ways for your hubby to be involved in the recovery...

I'll add a different perspective. My mother is the one that has been infuriating as far as information goes. I remember quite vividly getting strep several times a year as a child. I was even hospitalized for it at one point becuase they feared rheumatic fever. By the time I was in middle school, I always had to get an injection of abx on top of azith (which was way new abck then! lol!!) It took us years to figure out that my sister was a carrier the all along. After that, although I still got strep often - it was much more manageable because we were both tested and treated. This is what I remember myself...and with what my mom has filled in over the years. We have had conversations about my kids PANDAS countless times over the last 2 1/2 years we've been on this roller coaster. My mother bounces back and forth between - "there's nothing wrong with them, Bummy is just a boy, that's how boys are, McKinley is just senstiive...etc." to seeing the tics and being totally on board with things. That itself is frustrating enough. On a recent road trip, I was on the phone with my mom, killing time on the drive, and we were talking about my upcoming appointment with Dr. B. for my son. She got on her "there's nothing wrong...why are you going to think about doing something risky (IVIG), especially if they think he'll outgrow it, etc..." I went on to talk about the long-term effects - particularly the OCD setting in, etc... not to mention a really crappy childhood. When she says to me "well, you used to get strep all the time, and you had ALL KINDS of anxiety, and you're fine now." To which I had to do a rewind...what do you mean "anxiety" - now, I remember doing one thing as a kid that might be considered OCD - when I was young, I had to sleep with ALL of my animals in my bed, they each had a name, and my parents had to tuck them each in by name. If they messed up a name, they had to start over, and if one fell out of bed in the middle of the night...again, had to wake them up to start over. I remember that clearly, I was probably 4 or so, and outgrew that phase quickly, but I don't remember ANYTHING else, other than the crazy chronic strep that would be connected. She starts telling me all sorts of things - seperation anxiety, I crawled into their bed at night until well past 10 years old, strange food habits all the way through high school, all kids of stuff - that after she mentioned it, I remembered most of it vaguely. And see - I turned out just fine... I was livid - I went on to tell her that, no, I'm not okay - I have full blown OCD myself and told her some of my issues (everyone has to clean their kitchen counters with 3 different cleaners to get them clean - that's normal right?). She felt bad, didn't realize that it was related, or that my OCD was that bad - WHAT??? How many times have we had this conversation???? After all these years and conversations, I don't think she was being malicious in not telling me, I don't think that she was trying to pretend she didn't have a sick kid, or anything like that. I just honestly think she never made a connection. Our brains are so attuned to seeing the connection easily because we've been living this. Back then, they didn't know there was any connection - so eventhough we talk about it as it relates to my kids. She just never made the connection between my quirky behaviors (would only read when I was in my closet), and the chronic strep. As for sweet cheeks MIL and the spoon thing - that's just gross, even if our kids were healthy!!!

I ditto ptcgirl. We were 100% symptom free post T&A. Unfortunately ours only lasted about 6 weeks before he was reinfected. But it was the first time in over 2 years he was better. And even though it was short lived, I wouldnt hesitate to do it again. Our sucess was so significant that we got our pandas daughters tonsils out 2 weeks after our son.

Unfortunately no, it's a rx. Ask your pediatrician if that's a possibility. Ours makes us do a 14 day course (swab 2x a day) everytime he tests positive.

They're the ones by James Dean and Eric something-or-other

My son had strep hanging out in his nose - which cant be reached with abx. So we were in the same biat. Now, we swab the insidr of the nasal cavity with muciroprin (topical abx) whenever we get strep to make sure we catch it all.

My son came home this week from his special ed pre-k singing and talking of nothing but these books, so I downloaded them for my iPad. After reading them, I thouht they would be great for our younger kids. There are 3 books, and the premise of them is something he loves gets messed up (his new shoes and favorite shirt) or he goes to a new place (school) and it keeps asking the questions "does pete cry/worry?" "Goodness no!!" - because he keeps singing his silly little song. Its helped my son-we had a minor OCD snag at snack time and I asked if Pete the Cat would cry - and started to sing ine of the silly songs and it helped. Not directly PANDAS/ or OCD related but good "how to repond when things dont go your way" lesson that may be a start for our younger ones.