airial95

I've had our doctors quote a similar number to Buster (27% is what sticks in my head). No one has given me a really good reason. The immunologist mentioned that the titres don't really tell us much relating to PANDAS-specifically because it just means the body is mounting a response to an infection, and they're not always present anyway. The issue isn't whether or not the body is creating the antibodies to strep, its that the antibodies it IS creating are defective in some way, and there's no blood test for that at present. (She did mention that titres are helpful in cases where throat cultures came up negative, and this was a very simplified explination to my question about my son's maddeningly normal immune results and seemingly healthy immune system but 8 positive strep cultures in less than 18 months) Our pediatrician (just yesterday actually) hypothesized that just because they don't rise above the "normal" thresholds doesn't mean that they're not elevated. The "baseline" titres for our kids (when there's no strep issues at all) just may be very low - and they may increase significantly during times of infection - but not above that marker. But since no one thinks to pull strep titres when you're healthy - very few people have a really good "baseline" number to see if there is an elevation below the threshold. Not sure I explained that well - but we were just chatting yesterday when I had my son in for a throat culture (positive!) because of a backslide since his near miraculous recovery after his T&A. I'm shopping around for giant a giant bubble to keep him in if anyone is interested!

Our son had T&A in november, has been recovering beautifull (as long as he stayed on the Augmentin). Finished the abx last Monday - tested postive yesterday for strep. I feel your frustration!!! We've all cultrured everytime one of the kids pop for strep - but we're finally pulling the trigger and going for full blood work on Mommy and Daddy. Our vet understands this stuff fairly well too. She opted against culturing the dogs for the reason that they have to be sedated (mine are doggie-AARP eligible - so not something you want to do if not needed). And she just treated. I don't remember which abx she treated with (clavamox sounds familiar though), but it was one of the ones that were free at Publix - so other than the vet appointment (which my dogs were due for anyway!) it wasn't that $$$ for us.

I'm glad to hear that your girls are doing better. At our recent appointment at Dr. Murphy's office, Dr. Brown (one of her fellows) was discussing some of the differences in presentation between boys and girls, etc. She mentioned that the ADHD aspect of PANDAS (as well as ADHD in general) presents differently in girls that it is often missed as an issue. They're not usually disruptive, but may take longer to do tasks because they tend to "trail off" in their own mind - either day dreaming, or just lost in different thoughts - which may make schoolwork take longer. She noted that often girls aren't recognized as ADHD being an issue until much later - when it begins to impact their grades or potential in school. Because boys tend to be more hyperactive and disruptive - it's caught sooner. Sweeping generalizations - I know - but valid observations. When I read your post - that discussion immediately came to mind. Maybe the ADHD component of PANDAS is what may be hampering her. Possibly getting accomodations typical of ADHD students - like longer test taking periods - could be helpful and boost her performance enough to help you make the case for the honors track?

The email response was to wait until a week before our next appt, which is the 8th of feb. she finishes the abx on the 10 th of this month, so it will be about 3 wks.

I just got lab orders from Dr. M for our daughter, and forgot to ask the question as well. I emailed her, if I hear anything before you do, I'll let you know. (They're usually pretty quick to respond.) Thanks!

Both of my kids had their tonsils out in November/December and we asked about the Motrin specifically because my son was just coming out of an exacerbation/infection and we needed it to help with the symptoms. They told us not to give it for a few days, but then it should be fine. I only gave my kids the tylenol w/codeine once each - the first scheduled dose after the surgery. After that, I just just regular tylenol chewables and they both needed it only for a day or two after the surgery.

It IS possible to not have a rise in titres without any immune deficiencies - my son is a walking example. Never has had an elevated titre, even at the time of positive rapid and lab cultures.

It makes me feel so good to hear more than one of you mention that you "missed" symptoms in your other child because you were so focused on your more severe PANDAS kid. That was our situation too. If we had a "normal" son - we would've seen our daughters issues much earlier, and much more clearly. We too thoght it was attention getting behavior, stress from living in such a crazed environment with her brother. Momcap - my daughter presents much like your second son - except instead of chewing her clothes, it's picking at her fingernails. We haven't gotten any blood draws yet - got our first lab orders from Murphy's office Wednesday. (Our pediatrician hesitiated ordering any b/c he knows that Murphy's office orders more/different tests than he's used to, so he figured why poke her twice, he was certain it was PANDAS, she had the documented cultures to prove it. LOVE that man!!)

Wish I had known about this yesterday, I spent the morning at Murphy's office. I would've asked her about it. I go back in 3 weeks, maybe I'll ask then...OT maybe I'll email her...

My daughter had her first appointment at Dr. Muprhy's office yesterday. It was kind of nice knowing what to expect since we're there every 3 months with my son! As we were going through her PANDAS history, etc. Dr. Brown (one of Dr. M's fellows) commented on some of the differences between my daughter - who has NO hyperactivity issues, and my son - who could be described as the Energizer Bunny on acid and it wouldn't be an insult! My daughters PANDAS symptoms tend to be far more emotional (a lot of crying, "you don't love me" anxiety, etc...), while my sons are more behavioral (acting out, physical aggression). The dr mentioned that are some differences she's noticed. I was curious - my PANDAS kids are one boy and one girl - has anyone else seen differences in presentations between the sexes? I'm wondering if I might be missing some symptoms in my daughters case because she's presented so differently from her brother.

Might I offer another suggestion? I know I sound like a broken record to some of the regular folks on here, but if you haven't already, start some sort of daily log or journal with your childs symptoms. We used a daily scoring method that another parent on the forum (Buster) had recommended. I noticed, that in our case anyway, we didn't seem to be as "in tune" with the improvements as we were with the initial deterioration. Each symptom is heartbreaking, so every time we saw a tic, or our son touching or lining things up it was heartbreaking to us. But until we started to document it and quantify it, we didn't realize that he was improving on the antibiotics. It took us about a week to see any noticable difference, but even then, it was just the physical aggression that went away - the tantrums, rages, etc. were all still there. Until we started logging, we didn't realize that the tantrums were getting shorter each and every time. Yes - they were still happening, but a 3 hour tantrum compared to a 30 minute tantrum is an improvement. Without our log - we were just seeing it as still a tantrum. It might help you and your doctor objectively evaluate when to change treatment options and when to stay the course. Just a suggestion!

So - this morning, after I get out of the shower, I overhear my two PANDAS kids sitting at their litte table in my sons room chatting like two old ladies over coffee. What they were talking about? The weird things their brains sometimes tell them to do! No kidding!! My daughter was talking about bats - and how she knows that they only eat fruit and flowers, her teacher told her, but sometimes when Mommy is leaving, her brain tells her that the bats are going to get mommy, that's why she gets sad and doesn't want to leave Mommy - if she stays, the bats won't come. My son responds - "That's so weird! My brain doesn't say that, but sometimes it tells me to be angry even when I'm not angry and don't want to be" Unfortunately, at this point they saw me and started giggling and stopped talking. I wish I still had the baby monitors in their room! I would've LOVED to hear more of that conversation! I just thought it was interesting how they could share these things with each other, but if I ask my daughter why she's so scared without me around - the ONLY anwer I've been able to get is "becuase I love Mommy." I hope they keep having talks like this - maybe it will help them both!

Thanks for the kind words! They did do high dose abx during the surgery and for a week after - then we dropped the dose in half. I agree that it was likely the abx that caused the improvement (augmentin). We are very fortunate to have a great PANDAS friendly pediatrician who is pretty good about giving us abx when we need it. We decided to up his dosage our selves this weekend to see how he would react - we're already seeing a difference.

So I was reading on of our local paper's website this morning - as I do every morning and I came across a new organization using the acronym PANDA. I got a little chuckle thinking that this might come up now, in addition to all of the wonderful articles about our Chineese bear friends, when you're doing a PANDAS-related Google search!!

Thanks for the support! Alex, we are going Monday to get the abx increased again. After yesterday's behavior - I'm a bit miffed I didn't take the appt yesterday morning!! As for his titres - we are not monitoring them regularly - he has never had an elevated titre, even with a positive throat culture, so we didn't think it made much sense to keep poking him! I'll keep you posted if the increased dosaage helps!!

I'll trade ya! At the packed mall 2 days ago my son decided he needed to bend down and touch the gout between every 4th tile (ewwww) - when asked why - "to make sure it's safe to walk on". Oh - makes sense! Fortunately, he's only done this in areas where there's ceramic tile and grout - no more mall trips for me - presents from Wal-Mart for everyone this year!!!

This is EXACTLY what I was trying to get at!! Thanks!!!

Our son is only 4, and is a thumb sucker, but there was one PANDAS episode where he CONSTANTLY had his hands in his mouth - it was non-stop! We knew it was PANDAS related, because it stopped when some of the other symptoms subsided too. PS - I'll take 2 of the T's please, one for my son AND daughter!!!

I think that the age of the child also has a bearing on how/when to use the ERP/CBT. Our son was less than 2 years old at the time of his sudden onset - 26 months at dx. We started therapy with him just after he turned 3. The therapy in a kid that young is a bit different - in that we weren't really changing his actions or thoughts - but OUR reaction to them. A LOT of his early OCD revolved around things WE had to do either for him, or in a certain way - so it was a bit different for us. I also think that in a younger child, there is more risk of it becoming ingrained than in older kids that can actually remember what it was like "before" - or even communicate better. I think it was someone at the Rothman Center that said the concern with OCD in very young children (and to some extent the tics) is that they are forming so many new neural pathways each day that they can be "written" wrong, and that is one reason why we were still struggling with the residual OCD even when he was "healthy". As to the question "how can you tell when it's PANDAS related vs. residual" - you're probably not going to like my answer - but we just know. The way he cries is different, the words he yells, how he reacts physically - we've gotten to recognize it very clearly. And yes - that does make a difference in how hard we "push" him. We use the techniques in both situations to keep consistency - but we do give in when we see it might be PANDAS related. Another thing our therapist has had us do - which I think is important and haven't mentioned before - is we only work on 1 thing at a time. If we're working through the bedtime ritual - we give in on EVERYTHING else until the bedtime ritual is gone/improves, then we might move on to the teethbrushing issues. We worked in the order of "easiest to hardest". We tackled some of the things that we felt would be easiest for him to succeed with and went from there. So it's not like you're telling him to get over all the OCD at once. I know I've been on the boards almost 2 years now - but my PANDAS son just turned 4 a little over a month ago - I sometimes forget to mention that, and I think it is relevant sometimes in discussions like these.

We have had the same discussion with our therapists too. And they also used the drug addict analogy to explain to us how the OCD - once the medical trigger is eliminated - can become ingrained. For us - we use the ERP techniques every day. When he's not fighting an infection or exposure - they're very useful. He doesn't like it - of course he wants to continue his rituals/compulsions. But a heroin addict probably doesn't like rehab either, and would rather keep using than fight to get clean. When he's in a flare, the ERP is completely ineffective. And the level of meltdown/anxiety associated with the effort is multiplied tenfold. But we still give it a try. For us, we look at it as consistency. Whatever we would do when he's "healthy" we will do when he's not. (That goes for dicipline too - he may not sit through a whole time out, but we'll put him back several times before letting it go to make the point - and it's worked.) He still fights us out of an exacerbation - but he does come around. Our biggest issues are around food. He will ALWAYS eat what we give him - even if the quantity is off (our biggest issue) - eventually - when he's out of a flare - and it continually improves until we even have some drama free meals! If he's in a flare, the tantrum won't stop, and he'll skip that meal entirely because it's "wrong". We still won't give him a snack (against our rules - you don't eat the meal, you don't get a snack), but when dinner time comes along, we know to still give the push - no you're not getting just 4 peas, but we will eventually make him a new plate so he eats. When we start to see him slowly responding to the pushes - we know we can push harder. Keeping the consistency with the techniques has been useful to us in other ways. The first sign of the "real" anxiety, we know we might need to get the whole family tested for strep - so it's become a good early indicator for us. I think by showing him that WE aren't going to give in to his OCD and we are going to take control also gives him some encouragement that maybe HE can do it too.

Well, his surgery was on the 16th of November, so we had almost a month of repreive - which I'm thankful for!!! After the first week - we saw one tic creep back up. But things were still wonderfully amazing!!! On Saturday - we had a seemingly isolated OCD incident - wanting 4 donuts (donuts are a trigger, as is the number 4) - when I wouldn't give him 4 - meltdown like the old days - drooling, kicking screaming - the whole shabang. I took him to his "special chair" (sensory swing) and he stayed in there for about a half hour. When he came out, he was still crying and he came up to me and said "Mommy - I liked it better when my brain wasn't angry anymore." Broke my heart. But he seemed to be fine the rest of the day - if a bit hyper (but he had friends coming over that night so he was very excited.) Sunday was good - with no real issues. Monday - I started noticing some rigidity coming back in, he wanted to get his seat belts on/off before his siter, upset if he didn't, etc. I thought "uh-oh" but was still hopeful. Yesterday confirmed my fears - incresed rigidity, and meltdowns wanting to "start over" when something doesn't go right. I ended up having to give him motrin after about a 2 hour series of fits. Worked beautifully - better than it has before. Today I'm seeing more of the same, and worse. We had to run to the mall to pick up their X-mas portraits and he had to keep stopping (seemingly randomly) to touch grout on the tiles. I asked why - "so I can make sure they're safe for walking". Dr. M gave us a 10 day refill of his abx (Augmentin suspension) to take to Buffalo for X-mas, his current rx will run out this week. I made an appointment for our pediatrician for Monday to see if he'll extend us further - and possibly take us back to full dose (we've been on half for the last 3 weeks). We're also going to have his sister re-checked for strep - she's always asymptomatic, and eventhough she just got her tonsils out too - it wouldn't surprise me if she was the culprit. He could've gotten me in tomorrow AM but I wanted to wait through the weekend to get my husbands opinion on his backslide - see if I'm over reacting (I'm sure I'm not). He's been out of town for 2 weeks, so I'd like to get his thoughts - I also wanted to have a few more days of data to discuss too. Please keep sending us your warm thoughts, prayers and vibes - we need it!!!

Our pediatrician understood the controversy surrounding PANDAS - and even told us both sides of the story when we were first dx. He said the "typical" course of action for our son was to refer him out to a child psych - and they would medicate him. But he said - it may take us a couple of months to get in with the child psych - why not try the abx and see what happens and gave us a 30 day course. There were no signs of strep at the time in my son - negative culture, negative titres, but he had an impetigo infection 6 months prior, and his behavior was sudden a few weeks after that - and got progressively worse. His thought process was that trying the abx first was a "do no harm" kind of approach. (We called it the "spaghetti on the wall" dx - throw something out there to see if it sticks!) If nothing happens - we're no worse off than we were before, if we see any improvement - we may be on to something. He had treated other PANDAS cases before ours (and since) - but has now admitted that ours is the most severe/complex he's had to deal with. He keeps learning as we go. If more pediatricians had his attitude - we'd all be much better off.

I agree that the AAP had egg on its face saying the psych meds are better for our kids than treating with abx. But at the same time, I also understand their concern that parents look TOO hard for a relatively "easy" solution when their child may not have PANS, and may actually have stratight up OCD or some other issue. It's a philisophical discussion I've had with my VERY PANS friendly pediatrician often - and I don't think it's an easy one - how many PANS treatments do you try and see no improvement before you have to ask if its really what you're dealing with. Unfortunately - like my pediatrician is apt to say - without more research on the proper treatment protocols - it's an impossible question to answer. So while I still think the AAP looked pretty moronic with their stance - I at least can understand somewhat their underlying concern.

I thought about posting about PANS, but the comment section seemed to be hijacked by a vaccination debate - so it would probably be drowned out by that discussion. But I agree - it screams PANS to me when I see things like this.

I thought the article was very well written - it told both sides of the "controversy" while seeming slightly biased towards our side of the case. LOVE Dr. Murphy's quote - and will tell her that when I see her on the 4th! Dcmom - I understand your frustration - and your local media experience is terrible. But I don't look to these articles to specifically tell me anything I don't already know. Living in the trenches of PANDAS - we're more well informed than your average person on PANDAS - even the reporters!