airial95

My 7 year old exhibits many of these same issues, tantrums, crying a lot, frustration with herself, and an overall depression. In her case, as dcmom has indicated - it is OCD related. She tends to have a lot of intrusive and repetitive thoughts. She doesn't share them with us, so it's hard to get at the root of it. But much of her OCD are anxieties and worries that she internalized to herself. For example, one of the few she finally opened up about (only after the fact): She had been moody, quick to anger, crying a lot and very down for several days in a row - for no apparent reason. When she finally did open up to us, she admitted that she couldn't stop thinking about what color the car that was stopped next to us at a red light was that we saw driving home from school OVER A WEEK AGO - and it was worrying her. No matter how hard she tried to remember, or tried to stop thinking about it - she couldn't. It was driving her crazy - leading to her behavior.

Both hubby and I are civil engineers (environmental and transportation) and we each have uncles who are engineers.

My son has tested positive multiple times while on abx (most recently while on 500 mg Augmentin 2x day AND 250 mg Azith 1x per day - he's 5 yo and 36 lbs). My son never has any physical symptoms of strep anymore - just flares. Personally, if you have a local doc who will swab him and not think you're nuts - I would swab asap vs. waiting for Dr. B's.

I have heard a lot of good things about the program from others on here. And I have heard lots of good things about the RMH. I am local to the Tampa Bay area, so if you want any tips of things to do while you're here, let me know!

Once both of my children were dx with PANDAS - neither of them have gotten typical strep symptoms since. No fevers, headaches, tummy aches - nothing. Once, my daughter said her throat was itchy (and she was positive) - but that's about it. Only way we know it's strep is the increase in behaviors. My son has a few solid "tells" (ie wetting the bed = positive for strep every time), my daughter is a bit more subtle.

My hubby was given 30 days of augmentin when he came up positive. His doc only wanted to give him 5 days too - so our ped wrote him the longer script.

On the brainstorming side - we struggled for a long time (although we are classic strep trigger - no lyme) and it wasn't until we did a longer term combo of Augmentin/Azith and Rifampin that we saw significant gains (and a stop to the chronic strep infections.) My son even asked the doc for the rifampin to be refilled because it made him feel so much better. That is the only thing that knocked out our tics entirely, and got the OCD to a better place.

We have a phenomenal pediatrician that is our primary go-to guy named Dr. Friedmeyer. We have also been to Rothman and seen Dr. B in CT for IVIG. I just noticed that you're in JAX, if you're on facebook, there is a Florida group at www.facebook.com/groups/FloridaPANDAS if you're interested. I think there are others from JAX on there as well.

My son (5yo 36 lbs) is in 250 mg zith 1x/day and 500 mg augment in 2x/day. We just finished 90 days of rifampin as a boost to respond to recent infection. Every time we have tried to lower his abx over the past 3 years he has regressed.

smartyjones mentions something that has worked well for us with our PANDAS dd. She is also 7, and has emotional meltdowns at the drop of a hat. Rather than trying to "punish" her for feelings that she can't really control (and like you, we question all the time if she can or not!). We give her a place to channel those emotions. It's okay for her to cry and throw a fit, and yell and scream, and even call me and her father names (no swearing) - but she has to do it in her room alone. This way we are showing her that we are understanding of her feelings, realize that she may not be able to control them, but also teaching her that it's not appropriate to just let loose anywhere. It's worked okay for us - although, she still has her moments when she's in a flare. As for Dr. options, Dr. B is in Stamford, he's considered one of the leading guys, and we fly up from FL to see him for my son. He will test for Lyme and co-infections if you feel that is a problem. However, I will point out that my son has never had anything pop up on blood work - never an elevated strep titer even with scores of positive throat cultures. So labs may not give you a clear picture. If she responds to abx, I would say that's a strong indicator of a PANDAS/PANS type reaction. Have you gotten her checked for a new strep infection at the pediatricians? My son often got strep while on a whole host of abx, so it is possible. If you aren't already, you may also want to try giving her Motrin/ibuprofen regularly for a short period of time, it's been known to help some kids. It's a lifesaver in our house during really bad times.

Have you been journaling/logging his symptoms daily? I found that this helped us a lot, especially as things were getting better and then we had a backslide, it was helpful to see how that backslide compared to previous flares. (We were even able to identify patterns associated with full on strep infection vs. exposure to strep, etc...) What I found most interesting, is the longer the periods of improvement, the more devastating the backslide felt emotionally (and physically!). But when I objectively scored his symptoms, it was still a marked improvement from where we left off after the last strep infection. The better he did, the more devastating the backslides were. He has been doing phenomenally since IVIG - pretty much 100%. The last week, we started to see problems start to creep back in. It was devastating, but when we looked at our daily notes, and compared them to pre-IVIG, we are still so much more better off, just a minor bump in the road maybe 1-2x per day (typically around food or getting dressed), but he's still eating regularly (even if dinner a couple of times this week was a bit hairy), taking his meds without any rituals, taking baths on his own, and even getting dressed most of the time by himself. while the setbacks seem huge - the gains are still bigger. That's why the journal can really help.

She may be running the overnight culture to get information on what strain it is. They can sometimes tell if it's a certain strain, what type of antibiotic it will respond best to. For us, we had strep every 6 weeks or so (even on full strength abx) for over 18 months, until T&A surgery, and then it was every 10 weeks or so. The last time he tested positive was in September - while he was on 500 mg Augmentin 2x day and 250 mg Azith 1x day (he was 4 and about 35 lbs at the time). We added Rifampin for 30 days - which worked well, but when the Rifampin ran out, he reported that the OCD was coming back, so the ped just renewed it. He did 60 days of that triple combo, then we tried 30 days of Cipro (which he backslid a bit, but no + cultures), and went back on the triple combo for 90 days. He had IVIG about 6 weeks ago, and finished the 90 days of Rifampin about 10 days ago (still on the Augmentin/Azith combo). Since starting the triple combo - he has not tested + for strep. We have seen a backslide over the last couple of days (was at 100% pretty much after IVIG), not sure if it's discontinuing the rifampin or the fact that he has 2 loose teeth. We're working with the loose teeth theory b/c episodes are not consistent. Not sure this will help - but since chronic strep has really been our nightmare, thought I would share.

I'm going to offer a differing opinion. My severe PANDA boy is only 5 now, but my husband and I have often discussed that when in a flare, our biggest fear for our son is that he will end up being the next "Columbine kid". Even at a young age, it's something that we have feared is possible for him. As for the meticulous planning, absolutely could be OCD. My son will work out topics he is interested down to the most minor insignificant minutiae when he is in the throws of a flare (of course, not about something like this). The real unknown is would they actually carry it out - or is the OCD satisfied by just the planning? If you've never read the book "Triggered" - I recommend it. It's by a college kid who has pure "O" OCD - just obsessional thoughts, and many of them are violent. It provides insight into this type of OCD. That being said, we have been treating PANDAS for 3 years now, he just had his first IVIG and is pretty much at 100% (a few blips the last few days with 2 loose teeth, but that's to be expected.) If we hadn't had treatment early like we did - he would likely be institutionalized now. And yes, when healthy, my son is the most non-violent, easy going, empathetic kid you will ever know. When he flares, a switch flips - and you can see it in his eyes that he's just gone. It's scary when it happens now, at 5 years old, I'm terrified of what that is going to look like as a teenager. It's hard for me to acknowledge that we have carried these fears for our own child, but it's the truth. We no longer have those fears as badly now that he's responding so well to treatment, but they were very real. It's unfortunate that something like this is going to be associated with PANDAS now (like the Newtown/Aspberger's connection) - but we are using this to open a dialogue with our PANDAS kids (ages 5 and 7). We are using it as an opportunity to reinforce the therapy techniques that they have been using to help with the anxiety (and for my son, the rages), and to highlight that while PANDAS may be the reason they act out and do things that they really can't easily control - there are still very real consequences to those actions, as this young man is finding out. We are also going to try to use this as a stepping stone to try to get local coverage of PANDAS from our local TV/News. Always looking for the silver lining.

Dr. Murphy advised us to try an O3 supplement that does NOT have O6 in it. O6 can cause inflammation in some kids, which can be a big problem for our kids. If you have tried O3 supplements before, I would check to see if they had O6 as well, that might be part of the problem. I have found that I have to look carefully for one that is O6 free.

We have gotten strep multiple times while on abx, and yes, immediately after coming off within 24-72 hours were culturing positive again (either same infection or new one).

I think that doctors disagree on that. I had a long discussion with our ENT about that when we decided to take both kids tonsils out. We did my dd's adenoids separately because of recurring ear infections, and I had asked him to just pull the tonsils at the same time b/c of my son's PANDAS (dd wasn't dx with PANDAS yet). He didn't want to do it because of what you mention - they serve a purpose and if there is no problem, they shouldn't be removed. After my son's 8th positive throat culture in 10 months he agreed, hands down they needed to be pulled. He said that the "popular" opinion on removing tonsils has vacillated over the last couple of decades. Previously, they pulled tonsils at the first sign of a sore throat, then in the 80's and 90's, they pulled them very rarely, feeling it was better to leave them in to try to do their job, and just remove stones or treat aggressively if needed. He said that opinion is starting to swing somewhere to the middle now. They are not as quick to pull as they used to be, but also not as resistant. He said if a child has more than 4-5 strep infections in a year, it's time to have a discussion. 6 or more, it's a no brainer. He ended up pulling my dd's after her 4th infection in a year and confirmed PANDAS dx. In our discussion, he also said that IV abx during surgery used to be "standard practice", but that it's also fallen out of fashion. He still does it for PANDAS kids as a matter of course.

We treated with a variety of abx for over 3 years before we decided to do IVIG. We did it in April, and I am so glad we finally did. Within 24 hours - my son was a different kid. He woke up the morning after the second infusion (after being up all night with headaches and vomiting) and ate breakfast like it was his last meal. That is significant for us because my son's biggest OCD issues revolve around eating. So for him to wake up, ASK for breakfast, and eat with gusto was amazing to see. We are now 8 weeks post IVIG, and still doing well. I would say that he was absolutely at 100% post IVIG. First time we saw that since he had his T&A in 2011 (but got strep again 6 weeks post op). We are seeing a bit of a backslide these last few days - however, he also has 2 loose teeth, so we are hoping that is the culprit and not that the IVIG is ineffective. I should also add that 2 weeks post IVIG, my daughter got strep; not only did he not catch it (a minor miracle in itself), he also had NO reaction to her infection - something we often saw with him. My daughter has been in a flare since her last strep infection in April (unusual for her, she usually is back to 100% 2 weeks into a 30 day course of abx and doesn't require long term abx). We have been so pleased with our son's results, we are in the process of trying to get IVIG lined up for her in case her flare continues much longer. It was a long and hard decision for us, we didn't take it lightly. Prior to IVIG, we fluctuated between 75-85% , we still struggled a lot, but we were "functional" as a family. We had routines down and emergency plans in place that worked for us when the poop hit the fan. We had heard of so many kids getting worse before they got better on IVIG, that it terrified us to lose the "stability" we had worked so hard to achieve. But I am SO glad we did it. We are scheduled to go back for IVIG again in July - and my son (5yo) is actually excited about it, even though he had a rough night of side effects after the second day. He has told me time and again how much better he feels, and he can't wait to go back and get more "supermedicine". My son is happier. He is showing compassion to his sister during her flare. He's playing with friends and toys. I cried the other night when I was going around the house picking up all of his matchbox cars. Most moms would've been annoyed having to pick up after their kids like that - I was ecstatic. I can't remember the last time he just played like a "normal" little boy.

We have had great success with Rifampin. Our initial run was only 15 days last July (combined with Augmentin) and it completely knocked out our tics. In September, it was added for 30 days (combined with Augmentin and Azith) b/c of an active strep infection. He did awesome on it, and after 30 days had backslide and actually ASKED the doctor to refill it because he felt better on it. We switched to cipro for 30 days after that, but then switched to the Augmentin/Azith/Rifampin combo again. He just finished 60 days of rifampin and we are trying to take him off to see how he does with just the Augmentin/Azith (he had IVIG in April). My son also has an iron stomach, and it's the first antibiotic that affected him, but we just upped his probiotics and he did fine. It is supposed to be taken in combination with another antibiotic (I forget why), and it can turn urine, sweat, tears, etc...a slight orange/red color.

Didn't even catch the dosage...my 5 year old son is 36 lbs and taking 250 mg/day.

Mine are younger, so it's a bit different for us - but like others have said, we choose our battles. While we know that it is beyond their control - we have one overriding philosophy when it comes to discipline: the judge isn't going to give a hoot about PANDAS or that they can't control it when he's sending them to juvie (or worse - a mental ward!). We have one hard line that is unbreakable - no physical aggression. If they hit, kick, spit, punch, scratch, etc... that is automatic time in their room alone until they calm, with us restraining them if needed (nothing harsh - like Nikki described), they can yell and scream all they want, just no physical violence. And there usually is a consequence of some sort (no video game time, bed early, etc...). When they are not physical, just verbally disrespectful (which is more often the case now), we actually don't punish them for that - instead, we send them to their room (or another "safe" place). There, they can yell and scream and call us stupid to our hearts content - in the privacy of their own room. When they yell disrespectful things at us we respond calmly - for example "I hate you". "Well, that's unfortunate, because your father and I love you very much." We've been at this for over 3 years, and it's a system that has worked well for us. After the rage is calmed, we have a discussion about how hurtful words can be as well as physical actions. Oftentimes, they don't even remember what they said. But knowing they have a safe place to vent has been helpful for us. My son just got IVIG for the first time in April (it's been amazing), and about 2 weeks ago, he came up to me, snuggled me on the couch and said - out of the blue: "Mommy, I just want you to know that I love you and Daddy very much. Almost as much as I love Millie (the dog). I know I say mean things to you sometimes, and that I say 'I hate you', but I don't really. I don't like to say those things, but Harvey (his OCD) makes me." That moment made all of those rages seem bearable.

Augmentin/Azith/Rifampin combo. The Rifampin is the only thing that has cleared my son's tics, and since he started it long term in September - it's the longest strep free stretch we've had since 2009 (knocking on wood now.)

I would get him swabbed again. My son often has trouble clearing strep entirely. And we've tested positive even on mega doses of abx. Most recently - on 500 mg Augmentin 2x per day and 250 mg Azith 1x per day (he's 5 and only 36 lbs.) So it is possible the strep is still hanging about.

Yes - I believe the pier is closing this week. The paper has been having a countdown. However - its a big political hot potato right now - so that may change yet.

Yes - dilated pupils is commonly seen in PANDAS kids. I would insist on IV abx during the procedure, and strong abx post -op as well. You may want to switch to something stronger than Azith, we went with Augmentin after surgery and it worked well for us. But abx during the procedure is important because if there is strep in the tonsils it can let loose during the surgery. Some docs do a clindamycin/rifampin combo prior to surgery to try to get at as much bacteria as possible beforehand. But we did not do this. I would have them culture the tonsils for strep and everything else. It can help identify what the problem may be. We had a wonderful experience with T&A, my son was 100% immediately post op and had no tics/behavior issues for 6 weeks after. Unfortunately, the second we tried to lower his abx, he tested positive for strep about 6 weeks post op. But it was a game changer for us. He responded so well, 3 weeks later we were back getting our mild PANDAS dd's tonsils yanked too. But some folks have reported that their kids have flared badly from the procedure, most likely from the bacteria released during surgery. Best of luck!!

You can also look on the other side of the bridge in Tampa. Hotels near the airport are a convenient drive to Rothman, and then you also have easy access to other Tampa attractions like the Aquarium, Busch Gardens, etc... if you're interested.