airial95

We only talked to his office staff last night when they called to tell us the results. They faxed them over to him and told him to go into his PCP to get on abx right away. He's having a hard time getting into his doctor today - I told him he's not allowed back into the house until he's on a death dose of abx!!!

As most of you know, we've been on this journey for a couple of years now. Both my husband and I are pretty religious about getting swabed every time one or both of the kids come up positive and have always come up negative. We have asked our pediatrician and Dr. M on multiple occasions if we should have bloodwork drawn to rule us out as the issue - and Dr. M said that if we get cultured regularly then bloodwork shouldn't be necessary. At our appointment with Dr. B last month, he ordered blood on the whole family - as is typical for him. His office called this evening saying that my husband's bloodwork came back positive for strep!!! FANTASTIC!!! I wish I would've pushed harder for us both to get tested... Makes me wonder if he has been the reason that our kids can't seem to stay off abx and keep from getting strep. The kicker - he was on augmentin just before the blood draw for a suspected ear infection!! So he is off to his primary tomorrow to try to "score" some abx to clear him. Dr. B has faxed the lab results over for him to take with him, and hopefully he won't be met with too much opposition - if so, I'm hoping that our pediatrician will help us out. My husband laughed when I told him because every night when he gets home from work the kids "whack out" as soon as he walks in the door - start fighting or getting super hyper, etc... it's like clockwork almost every day - he said he wonders now that he knows he was positive if it's because they can "smell the strep" on him! lol I never thought that my husband leaving next week for 3 months for a project at work would be a blessing! Maybe it will make a difference!!!

I went through similar emotions when my daughter was diagnosed as well. Her brother is so much more severe that all of her symptoms were overshadowed by his. I struggled with the guilt of having "missed" it in the first place, feeling like had I paid a bit more attention to her we would've caught it sooner. This type of thinking doesn't help anyone - trust me! The good news is that since you've been there/done that with your son - it's easier to have a plan of attack and action. The bad news (at least in our case) we haven't figured out how to be as "understanding" of her brand of PANDAS vs. her brothers. I find myself having to stop and re-evaluate if she's just being a drama queen or if this is her PANDAS flaring...

It was just a blood draw - no swab so he didn't have to worry about that.

I can totally relate!! My son was 19-20 months at onset (after an impetigo infection) and dx at 26 months old. So I can relate. He went untreated for 6 months because we too thought it was the "terrible twos". It's extremely difficult at that young age to distinguish between age appropriate behavior and PANDAS symptoms - because to some extent - almost all PANDAS symptoms are "developmentally appropriate" at some point. Which is why I think early dx for young kids is so hard. It is hard to remember "pre-PANDAS" when they are that young. Our son was very advanced verbally - speaking in full sentences by 15-16 months. He regressed significantly during the 6 months pre-dx, but we hardly noticed because he regressed to "normal" levels. It wasn't until he started treatment and started speaking more again that we even remembered how he was "before". Early on in our journey we kept a lot of notes, diaries and behavior logs. This has helped us, not only to see how far we've come, but also to remember things that we thought were "not normal" for him and were an issue (meaning he didn't do those things before onset - like biting and hitting.) We had the same questions and doubts about what was "baseline" for us and were we expecting too much, doing too little, was some of this just our son's peronality and this was our "new normal"? For us the answer came post T&A in November - he went back to 100%. It was the first time in over 2 years we saw our little boys real personality come back out. It was amazing once seeing it all of the things we remembered about him pre-PANDAS that we had just simply forgotten. (Things like how mellow and easy going he was, how polite and cooperative. As a toddler - we used to call him the "floor model" of babies - the one you show folks who are thinking about having kids to show them how great and easy they are!!!) It was also very emotional for us. Seeing who he "really" was gave us a clearer picture of how much he was really going through. It was so drastic - practical strangers from church, our bus stop, etc... were commenting on how different he seemed. When he got strep again 6 weeks post-op and started to backslide, at least we had renewed hop that he could get better, and we knew what to shoot for. Our son has an IEP, and is in a special-ed pre-K for one more year. It was extremely difficult in our initial IEP meetings to discuss things like their learning style, or how PANDAS would affect him academically, what academic goals to set. I mean, he was 3, I don't think I could've answered what a kids "learning style" is for a normal kid, let alone one besieged by PANDAS. And really - academic goals for preschool??? Is "not eating the paste" a good goal?? After placement - his teachers have helped immensely craft his IEP, if you have good teachers, they can help you decipher what is "normal", and what goals to set, etc... It's not easy, but there's a great community of support here if you need it!!

We also had a great recovery. My son was 4 at the time of the surgery, and his improvement was immediate. It was th first time he was 100% since our journey began. He was on cefdinir leadingup to the surgery, iv abx during the surgery, and then switched to augmentin post-op. His recovery was such a success and so easy, we had our daughter's done 2 weeks later - also an easy recovery. Unfortunately, our remission didn't last - my son tested positive for strep about 6 weeks post-op (about 3-4 days after stopping abx), and has now had strep 5 times this year - daughter lasted a bit longer, but she's already also had 3 postive strep infections this year too. I will say, that the severity of their flares seems to have gone down a bit since the surgery. In a nutshell - I would do it again in a heartbeat!

Dr B ordered labs for the whole family - he took mine and my sons at the appointment, but my hubby and daughter still had to go. I've taken her each time and it has been like a scene from the exorcist every time. I thought...finally!! Dad can take one this time. Well, she was an angel, no tears, no screaming, nothing!! As a matter of fact, i went in for labs about a half hour later (didnt tell my hubby i had to go too...i wanted him to deal with the terror for once!) And a little guy was coming in behind me and the tech said "I hope this little guy is as easy as that little girl we just had" referring to my daughter. How about that!!! I get hel everytime - he fets an angel!!!!

we also swear by regular dosing of ibuprofen. Even our kids teachers have noticed the difference on the few occasions when they have had to administer the dose...

Full disclosure, We just recently started seeing Dr.B. But we have also been a patient of Dr. M in Florida for 2 years - she was local for us, and did very well by us as well. In our case, we choose Dr. M as our first specialist primarily because she's in our hometown area...it was easy. When we were finally faced with having to get another consult (with Dr. M's agreement), we looked at ALL of them, and what their specialty was - immunology, neurology, etc... In our case, our son responds well to abx, but has had 20+ positive cultures in 2 years, with the longest stint off abx being 5 weeks. We've been to immunology and infectious disease locally and they coudln't help. But while we have tics - neurology hasn't been our biggest concern. We personally felt we would be better served by an immunologist who specialized in PANDAS than the other specialties. We have our follow up in 2 weeks - so can't really say how our decision is working out...but I did like how he approached our case/records etc. Just thought our methodology would help in your decision process.

We've had it every July the last 2 years...so I can relate!!! So far we're knocking on wood this year (although its been rough this week...) Sending you good vibes taht it clears quickly!!!

Follow up phone consult on August 1st! I'll keep you posted!!!

I havent noticed it specifically with the azith - but hyperactivity is a huge symptom for us, and usually the hardest to kick.

My advice would be to get the eval. My kids presented sooooo differently. If it wasnt for our son being severe, our daughter would have flown under the radar for a much longer time. My son is about as textbook as it gets...my daughter - her OCD is all obsessive thought - no ritual or compulsion so it went unnoticed. It was an increase in seperation anxiety and she had wet the bed at the same time her brother had a flare that started to tip us off. (She was always tested and treated for 30 days when her brother tested positive anyway.) Her last 2 run ins with strep this year were by far her worst episodes - more recognizeable symptoms but still nothing close to her brother.

Vacation Bible School was this week- and its always tough...long days between VBS and summer camp, lots of sugary snacks, really tired. But its both kids favorite time of the year so we suffer through. Each year it ends with a performance for the parents. Each year my kids are excited about it but freak out when its time. This year, my son (whose our challenging case) was rearing to go, his sister - not so much. Tonight - they botg got up there, were in the front row and ROCKED it!!!! So proud!!!

I'm sure other folks will chime in, but you'll see varying degrees of sucess depending on how long the infection went untreated, as well as the type of antibiotic used to treat. But I think that a universal theme you will see is that a "typical" course of abx will NOT normally halt an exacerbation. You'll often hear the course of PANDAS described as "waxing and waning" - while the onset is extremely abrupt typically, unfortunately it doesn't turn off quite so easily. In our case, with our son, his first PANDAS flare lasted 6 months before he was dx - since he shows no signs of strep other than the PANDAS symptoms. We thought it was a phase - or just the "terrible twos". When he was dx, the doctor gave him a 30 day course of azithromycin, we saw improvement with the physical aggression within about 7 days, and the tantrums became "manageable" after about 10-14 days on the abx. By the end of the 30 day course, we did see dramatic improvement in the psych symptoms - but the OCD and ODD were still very severe. We were lukcy that we saw relief with the first abx that we tried - others have to try various abx before finding the one that is right. Ultimately, he tested positive for strep while ON the azith - so we had to switch things up.

Our pediatrician has us in ling term ibuprofen. We dose 2 x a day...but have skipped the 2nd dose at times if its not needed. He has told us that as long as you din't exceed the daily recommended dose for their weight, side effects are a minimal concern.

I believe Dr. M has published on this. If I remember what she told me correctly - there is a high probablitiy of iPANDAS in siblings particularly in families where there is a history of chronic strep, rheumatic fever, or other autoimmune conditions. I think it increases more when the history is on the mothers side. (I remember the mother part particularly because thats our case and it helped justify my mommy guilt over this ) My daughter was dx last year, but suspected for a while prior. Initially a mild case and all symptoms would resolve with a standard dose of abx. She took a bad turn in February, and has gotten worse with each infection since...but she's still not even close to being on the same level as my son.

We had the same culture results as you - negative for strep but positive for H. influenza. Not sure what it means...

We didn't even have to mix it up - we just put the syrup on the spoon and the crushed pill on top and he didn't want to wait for us to even mix it! did it fine again this morning too!! We're going to start working with him on some of the tips to get him to swallow pills - but in the meantime, this is working!

The chocolate syrup trick worked like a charm!!! We cut it in half to do it in 2 tries (just in case it was a failire we wouldnt lose a whole dose!) It worked so well he was impatient for us to crush the second half!! Thanks!!!

We're not on the XR, I checked that with the pharmacist too - to make sure. He's excited to try, and didn't have trouble chewing it last night, but I think this morning he held it in his mouth to long - making him gag. We made a bid deal about how his "new" doctor thinks he's such a big boy that he can take grown up medicine like mommy and daddy - and that has gotten him excited to keep trying - even after this morning's mishap... Thanks for the suggestions - I may have to try the chocolate syrup trick tonight...sounds like something he'd be up for!

The dose of Augmentin that Dr. B put my son on doesn't come in a liquid suspension...so we have pills. The pharmacist said we can cut them in half...but they're still pretty huge. He typically chews his melatonin, which tastes bad, but he gets to drip soda with it (he can't have soda any other time) so that works. We tried to get him to swallow it in two last night - no dice. He did chew both halves though and get them down. This morning, he gagged and threw up while chewing the second half. any suggestions??? Has anyone used that "pill glide" stuff? Does it actually work?

I saw the CD when we were there on Monday and tgought the same thing!!!

The appointment went well. We werr acting up a bit once we got in with the dr, but I figured thats as good a place as any!! Doc was great, really feel like we have a direction. Ordered blood for the whole fam...got mine done there, and am giggling cause now that means my hubby has to take our daughter - not a fun chore! Totally worth the trip, will be curious to see what happens at our follow up in 6 weeks. A bit of a brief meltdown on the train trying to find a free spot with 3 open seats (one for our giraffe) that was facing forward...but we did it - all the way in the back (crossing train cars with a 4 yr old is scary! ) and now we're napping happily on the train - thank God! And will even have time for the extended stop in Times Square we missed yesterday!

Just had to post this as a testament to how far my little guy as come. After boarding our flight, had to deplane because of an equipment malfinction - delayed indefinitely - possibly cancelled. Managed to get 2 of the last 6 seats on a flight 4 hours later, but still had to hang at the airport in case our original flight took off Spent 4 hours in the play area - actually making friends!! New flight delayed - barely made the 9:00 train to the city (original plan had us spending an afternoon in Times Sqare). Still ended up walking through Times Square at night and took a later train to CT because he was so amazed by the city (totally worth it!!!) Get on the 10:30 train to Stamford and he finally fell asleep. Got to the hotel around an hour later and he even got his own jammies on! All of this with eating nothing but snacks I packed since our late lunch (thanks to delays), no nap (usually takes a 2-3 hour nap still for us) - and here's the best part: No meltdowns, fits, tears - nothing!!!! A little hyperactivity - ubderstanably, but directed to hoirs in the airport play area. At one point he even said to me that he was having the best time "in the universe - even if all the people in the world were here, it couldnt be more awesome." Even if our appt this morning is a complete bust...and yesterday was a travel nightmare, to see him that happy under those circumstances - something I never thought possible since he got sick - was totally worth the trip!!!