airial95

Our ped explained the tooth connection like this: Strep is everywhere (unfortunately) - and loves to hang out in the mouth/on the teeth. When a tooth falls out/cuts through/cleaning/dental work, etc... there is an opportunity for the bacteria to enter the blood stream - triggering a flare. He said that is one of the reasons dentists will prescribe abx for rheumatic fever patients prior to dental work.

If its a neurologist - it's most likely HD. They consider the HD a "neuro" dose vs. low dose as a "immune" dose. That's why som many immunologists aren't comfortable with HD initially, they are used to only doing the LD. But since PANDAS is really a immune/neuro combo...

He could have been exposed to someone who is sick around him, that always causes a small flare in symptoms for my son particularly. But also don't rule out that he could have strep (or another infection) just because he is on abx. Both of my kids have repeatedly gotten strep (positive throat cultures) while on full strength abx, even more than one full strength abx. It is possible. If you have an understanding pediatrician and it continues - you may want to get him swabbed.

It was the experience of seeing him 100% post op that pushed us to go for IVIG. 6 weeks after surgery he got strep again. And while the flares were less severe, he was still getting strep A LOT. 6-7x the year post op vs. 10+ per year the 2 years prior. So it was still an improvement, but still. Prior to seeing him "normal" for the first time in 2 years, we were beginning to think that 85% recovered was our "new normal". After he caught strep again and regressed, we wouldn't stand for anything less than 100%. IVIG has done that, but his progress is only temporary - about 7 weeks. So we repeat IVIG every 8 weeks for the time being. He started IVIG in April, and I am happy to say only had 2 strep infections in all of 2013. A HUGE improvement (one was in Feburary, prior to IVIG, and the second was just in December - by far our longest stretch to date!) The flare associated with his infection in December was actually our mildest ever (although it was devastating to us because he had been doing SOOOOO well for so long that any set back seemed severe.)

We were 100% immediately post-op. It lasted 6 weeks, until he got strep again (but the flares were less severe post op). We never experienced the T&A associated flare.

Excellent article, the only thing missing is the third leg of the dysfunctional tri-pod driving medical decisions and diagnoses: the insurance companies. Their influence is almost as deep and corrupt as the pharmaceutical industry's!

Follow your gut, if you are worried about bi-polar, talk to the doctors and see what they think- absolutely. Every time we had a "new" symptom crop up that could be explained away by PANDAS, we still followed up on the more traditional/expected causes for those symptoms. We always wanted to make sure we weren't missing something else because we were looking at everything through the lens of PANDAS. If you do follow up on the bi-polar concern, just ask yourself prior to going in to see the doctor "how am I prepared to deal with it if it is bi-polar?" Are you comfortable medicating, etc...? It's a good idea to be prepared with what you're comfortable with if the doctors suspect that. And also, keep in mind, most traditional psychiatrists feel more comfortable with a bi-polar dx than PANDAS, so also ask yourself if the doctor seems to be pushing bi-polar because it makes them comfortable, or because it fits (are they ignoring all of the other symptoms and past history?). In the meantime, I would start up the journaling again, it may give you some insight as to what you're dealing with. Also, my son has had PANDAS since he was 19 months old (dx at 26 months), so we have been at this for quite a while, and for the first 2 years, he was getting strep infections every 6-8 weeks. So just as we thought things were getting better - BAM, we were back at square one. So it did feel an awful lot like cycling. I will also say that my son's presentation has changed over the years. Some things have stayed the same (food related OCD), but his tics and other compulsions have morphed over the years. If you look at our original list from when he was 2, it looks nothing like the list we would put together today. But while the symptoms changed, the patterns/triggers didn't. Additionally, my daughter was dx with PANDAS 2 years after her brother, and their presentations/symptoms couldn't look more alike. My daughter looks far more bi-polar than anything, but it is classic PANDAS.

Oh, and I get the second guessing. When we decided to go forward with IVIG, we were functional, attending school every day, about 80-85% recovered and had finally found an abx combo that seemed to be keeping the strep at bay. We decided we had to make a choice about whether "good enough" was what we really wanted for our son. And we were terrified. It took us over 3 years to make the decision to do IVIG for our son...wish we did it sooner (which we did for my daughter the first time she had a strep induced flare that didn't clear with 30 days of abx as they had in the past for her).

My son just had his 5th infusion, my daughter her 3rd. It has been a game changer for us. Prior to IVIG, my son would recover to about 85-90% - with lots of residual OCD, however, he was still getting new strep infections, even while on full strength abx/combo abx. That's when we tried IVIG. Headache/nausea after first infusion, but within 48 hours he was eating, dressing himself, brushing his own teeth, and wanting to play with friends. He was 100%. Nothing short of a miracle. He has regressed 7 weeks post infusion each time, so we are on an 8 week schedule (his most recent infusion was last week). A month ago - both he and his sister got strep. While the flares absolutely SUCKED after being practically symptom free since April (just a few bumps the week before each infusion), they were no where near as severe as they used to be. He would be functional a majority of the day, with brief "episodes" here and there that would usually subside within an hour or so. Nothing like pre-IVIG. Tips: HYDRATE, HYDRATE, HYDRATE. Start pushing fluids a few days before (also helps start the IV to be hydrated), and keep them coming through the infusion and for a few days post infusion. It really does help keep the side effects at bay. He had some side effects after the first 2 infusions, and now practically nothing - sometimes a small headache (motrin kicks it) if he hasn't continued to hydrate post infusion.

Be aware, if you are doing phone consults, those are not covered by insurance and are not eligible for reimbursement by law in most states.

Have you ever kept a daily log or journal with his symptoms/behaviors/triggers? We did for the first 2 years after my son's onset - and it was a lifesaver. We were able to identify patterns and pinpoint specific triggers. I also doubted the diagnosis many times, and then I would look at our journals and the correlation to strep or strep exposures was just too strong for me to deny. Some things we learned about our son through the journals: He typically would take 6-8 weeks to reach 80-90% recovery from a new strep triggered flare (unfortunately - the first year he was getting strep every 6-8 weeks!) When he is exposed to strep (someone close to him with a confirmed infection) but doesn't actually GET strep himself - we see a 5-7 day flare. We're usually notified on day 3-4 of the mini flare that he has been exposed. Unfortunately he starts to flare prior to knowing he was exposed - but it has helped us track a pattern before we rush for a strep test (usually go on the 6th day). Bed wetting = + throat culture. EVERY. SINGLE. TIME. If we see bed wetting and no other symptoms yet - doesn't matter, we are straight to the ped to adjust treatment (and strep check - which is ALWAYS positive). These are just a few of the things that we have learned using logs/journals. We use an excel spreadsheet with a numerical score. We could also see that with continued treatment, while he flared with each new infection, overall, the flares were actually becoming LESS intense than the previous - which is a small consolation - but still an improvement. By only changing one thing at a time and keeping logs - we had good indicators of what was having an effect. Numerical scoring helped the most - because it kept us objective.

We' ve done CBT with Dr. Stortch's team regularly for the past several years for both of my kids. It has been a god send. They "get" PANDAS. Even though the study (and therapy techniques) are the same for standard OCD and for PANDAS - they understand the subtleties associated with the PANDAS kids. We love them over there.

Where in Florida are you? I find it very odd that they are discounting Dr. Murphy out of hand. It's not like USF is a slouch of a medical institution or anything. I am in Tampa, and know there are a couple PANDAS friendly pediatricians here - but then, we are in Murphy's backyard, so that might account for some of it. In the meantime, have you considered taking your kids into a walk-in clinic to get tested? Just tell them that they are complaining of a sore throat and you know strep has been going around their school.

I know of another family (not on these forums) whose daughter got much worse with LD IVIG. Once she started HD again, she has improved significantly. HD is considered 1.5-2.0g/kg

Who knows!!! But considering he woke up this morning with a fever and sore throat...I'm sure we are about to find out!

If you reach out to Beth via her facebook page - she may even be able to connect Sammy with your son via social media. Maybe hearing from an older kid who has been through it might help?

basically - insurance. She couldn't get HD covered, and her immuno while supportive of PANDAS (but not that well versed at the time) thought that extended LD treatments may over time have the same effect that HD had. (She had already had one HD treatment prior with fantastic results - the LD came 9 months later after re-infection). She did 4-5 monthly LD treatments and it sent her daughter into a downward spiral. She is now doing HD monthly - and her daughter is recovering well.

We have tested positive for strep while on Azith - even long term. We have also tested positive while on Augmentin, Cefdinir, Augmentin/Azith combined, Augmentin/Azith/Rifampin combined, and Azith/Rifampin/Cefdinir combined.

I know a mom in FL (not on these boards) whose daughter got MUCH worse after LD IVIG. It made all of her symptoms worse, including her OCD and tics. She just started monthly HD IVIG a couple of months ago and her daughter is doing leaps and bounds better.

January will mark 4 years of constant abx use for my son (with a few breaks the first year to "see what happened"). There are other conditions - like Rheumatic Fever - where patients are put on long term abx.

Another thought - have you gotten the whole family tested for strep? It is possible that you may be a carrier and could be inadvertently setting him off that way too (although, my kids also experience the perfect at school/terrible at home pattern as well). I mention testing the family because while we all got swabbed every time there was a new strep infection (and adults always came back negative), when we finally did blood work on the whole family, it turned out my husbands strep titers were sky high - and he was likely the reason my son A) kept getting strep ad nauseum, and could never reach a complete level of healing.

LLM is exactly right - those are the techniques we use with our therapist. It is the hardest thing in the world to not be able to tell your child you love them because they have already "used up" all of their turns for the day!!! We also use humor. After my daughter has used up all of her "turns" we often try to be light hearted in our answers (we are a very sarcastic family - so it comes naturally!) One of the most surprisingly effective responses of mine when she asks if I love her? - "Oh man, you're on to me. I'll admit it - the only reason I had you is so I could play with toys again! (or eat Halloween candy, go see Santa Claus, or some other kid centric activity relevant at the time).

My 7 yo dd has many of the same symptoms you have described - down to the having no friends, no one loves her, separation anxiety, etc... We give her motrin every morning during a flare. Period. It helps sustain her. She also has a standing order at school that she can take one after lunch if she (or the teacher) feels she needs it. Do I worry about long term Motrin use? Yes and no, our ped has instructed us that as long as we don't exceed the daily recommended dosage, we should be fine. Typically, her morning dose is all she gets. It helps manage to get her out the door and to school. We are working with a behavior therapist on CBT for the intrusive thoughts. It is very helpful. It has given both of us a constructive vocabulary to help her work through these anxieties.

Dr. Murphy is in Florida. Dr. T is Dr. Trifiletti in New Jersey.

a few days is not long enough to see improvement. At my son's onset - it took us 7 days to notice any improvement, and 14 days to notice significant changes.