airial95

They are actually called "allergic shiners" like cobygurl noted. However, my PANDAS son is not allergic to anything - but he gets these very pronounced when he has strep or is in a bad flare. Lots of other folks have reported these too - PANDA eyes!

And Amoxicillin is no even close to being the strongest antibiotic to fight strep. Case in point: Amox stopped working on strep for me close to 30 years ago...and back then it WAS one of the strongest you could take.

My daughter is only in 2nd grade, but we had to put accommodations in for writing starting last year. Her include many of the ones that have been mentioned here, but also the ability to dictate make ups for spelling tests - for example if her writing is so poor it is illegible, she can ask her to spell the word verbally to confirm knowledge. This brought her spelling grades up from 70-80's to consistent 100's across the board. In general, we also have assignments limited to mastery of the concept vs. mastery - which helps limit the workload. She is also allowed to email her writing assignments directly to the teacher (using my email address - she is only 7), and when things are REALLY bad, she is allowed to dictate assignments to her father or I for us to type for her. But we only used that a few times last year in her worst flare to date. All of these things have been immensely helpful. I know we will have to continue to modify as she gets older and assignments get more complex - but the school has been more than accommodating. As for the ipad suggestion - that is a really good one - and if price is an issue - most all smart phones or android tablets/kindles also have cameras now and have much of the same functionality of the ipad at a much more reasonable cost.

A sawtooth recovery is very common with PANDAS, two steps forward, one step back. Keeping a daily journal or log of symptoms and their severity really helped us track patterns for our son early on. We used a rating system that someone recommended on here, 0-9 for each symptom, with 0-3 being minimal, almost normal behavior, 4-6 being present and causing disruptions, but still somewhat manageable, and 7-9 being severely dysfunctional, disruptive. We would track each symptom every day, and had his teachers at day care do the same thing (he was 2 when he was first dx). We would then track his "scores" in an excel spreadsheet. When we would graph the progress, the sawtooth pattern became obviously clear, but what we noticed is that when the symptoms spiked back up again, they usually were slightly less severe than the previous spike, and that downward progression continued through the sawtooth period. Using a numerical scale also helped us to keep the emotion out of our logs. For example, having a stressful day at work and a flat tire on the way home, only to come home and have him have a meltdown over dinner would probably make that meltdown much worse at the moment because of the outside stress, but when we would have to put a "Score" on it, it was easier to quantify. It may have seemed like a "9" in the moment, but that meltdown may have only lasted 20 minutes (vs 45 previously) and he eventually ate (vs. not eating anything until the next meal), so in reality, it was our stress that made it seem so bad. Those logs have helped us immensely also identify patterns that may indicate a new strep infection. For example, whenever my son wets the bed - he tests positive for strep. We figured that out after the 3rd of 4th time seeing that pattern on the logs. Now we know - wet bed, don't even wait for other symptoms. Of to get swabbed.

Another thought - I think that there are apps for the ipad, kindle etc... that can convert any e-book to an audio book. it might be worth looking into.

I thought it was a good explanation of at least the peer-review process. It's simple and straight forward - does it go into every aspect of medical publishing ($$ influence, ego influence, etc...) no - but I think it's a good start for those who are easily overwhelmed with what is real or not. For example, you often see "studies" published on various supplements, weight loss products, etc...that are not peer-reviewed and often paid for by the companies who make the products themselves.

My son has often tested positive for strep even while on abx. He has tested + while on treatment doses of Augmentin, Azith and cefdinir individually, and also while on 500 mg Augmentin 2x day AND 250 mg Azith 1x day (he was 4 at the time and about 35 lbs). At that time we added rifampin and he has done well on the triple combo. I see that even the ped agrees that it's likely strep - but another thing to remember is that many PANDAS kids also react to others around them even if they do not get infected themselves. Since it's the immune response to strep causing the problems, any exposure to strep can trigger the immune response, even if they don't catch the bug themselves. And exposure to strep can happen 24-72 hours before someone even comes down with any physical symptoms (sore throat, fever, etc...) My son was the proverbialy "canary in a coal mine" and would start to flare 2 days before we would get the first notification - fortunately, if he managed to not get re-infected, those flares only lasted about 5 days before they began to subside...but they sucked none the less. We have it written into both kids 504 plans that they are allowed excused absences when there is strep prevalent in the classroom and make up work is allowed during that time. We used that twice last year in my daughter's class when strep was epidemic (3-4 cases/week it seemed!)

My son was much younger at the time we did tonsillectomy (4) but he already had a well documented strep history (10+ infections/year for 2 years). When we did the T&A, we were hoping it would not only help the PANDAS, but reduce the chronic strep. Our ENT, pediatrician, neuro and PANDAS doc were all on board. We kept him on abx prior to surgery, did IV abx during the surgery and then switched to augmentin post-op (a switch we were planning a few weeks prior to surgery but decided to wait). Within 24 hours of the surgery, my son was 100% for the first time in 2 1/2 years. No tics, no OCD - nothing. He was pleasant and happy. Even casual acquaintances noticed the difference in him. It was miraculous. So much so - that 2 weeks later we were in having my daughter's done (she had just been dx PANDAS 3 months prior). Unfortunately, the improvement was short lived. He got strep again 6 weeks post op. The surgery did reduce the number of strep infections by about 40%, and the severity of the flares have decreased since the surgery. My daughter also continued to get strep post-op, but she had always been a mild case recovering within 30 days on abx. Would I do it again? In a heartbeat. Because like your husband said, if I didn't, I would never know. For us it was another piece of the puzzle that eventually led us to IVIG for my son (who is doing well now). It did help - but it wasn't the miracle cure we were all hoping for.

Good advice. I learned in our first IEP meeting for our son at 3 years old that in general, the schools/teachers don't really care about the medical side - just what they see in the classroom. I have a similar approach to LLM. Because I don't want to dominate the conversation or teachers time at open house, I prepared a small package to give to her - this is what it includes: A 1-page introduction letter. This letter outlines in about 3 sentences what PANDAS is, then goes into how it showed up in class last year and refers the new teacher to last year's teacher if they are curious about how it affected class time (always ask last year's teacher if she's willing to help). This also has a list of about 2-3 bullet items from the 504 that I feel are important for the coming year (frequent bathroom breaks, no sharing supplies, etc...) The only other "medical" items I include are things that will affect their attendance at school, ie - weekly behavior therapy appointments, absences for IVIG treatments. It's less than 1 page - short and sweet - ending with a request to meet to discuss further once the school year has settled in. Attached to it, I include a "resume" of my child. It's one page - but like LLM, all the info can fit on a 5x7 index card. It includes a picture of my child, and has these categories: At a Glance (what key words describe my child), Strengths, Weaknesses, Long Range Goals, Focus for X Grade, Things to Know (ie: describes his OCD as "Harvey") And that's it - that's all I give them at that point. 2 sheets. I've done it for K and 1st grade for my daughter and her teachers loved it - the "resume" especially. This way we can keep the meet and greet short and sweet and allow the teacher to spread her attention to all the families there. My son starts K this year. I've already put his package together. Since he's moving over from the public school EELP program to the Charter School regular K class, I also attached a copy of his last IEP and developmental assessments for the teacher. (Since we closed out his IEP and did a 504 for him for K - I'm not sure what previous info she will have access to.) Later, at the meeting with the teachers, I have some additional information handy - but only if they ask for it. Some info I like to give is the "What is PANDAS?" page from Pandas Network.org and the School Nurse News article "PNDAS in the School Setting" (also can be found on Pandas Network.org. The IOCDF also has some GREAT articles including: "Recognizing OCD in School", "How OCD Affects Studies and Grades", and "The Not-So-Obvious Symptoms of OCD in School". I will share those articles if the teachers ask for them, or if the conversation lends itself into that direction. My son was in the EELP program for 3 years, and my daughter got a new K teacher mid way through her K year - so I've done this process for about 5 different teachers now - and we've always had great success and cooperation from them. If you overwhelm them with too much info at once - you lose them. And while I'd love to educate every teacher to be able to spot it in other kids - it's not possible all at once. You have an entire school year to educate them!!

Great message, and timely with the start of school happening soon for most of us! I read his book when it was first published, and it really was eye-opening to me. Like him, my daughter suffers from primarily obsessive/intrusive thoughts, but not really compulsions. Reading his story gave me an insight into what might be going on in my daughter's mind and was really enlightening. I recommend it if you haven't read it already.

We kept our son home for a couple of days - primarily because he was tired. His first IVIG we did Thurs/Fri, and we sent him back to pre-school on Monday. He did great. This last one we did on a Mon/Tuesday, and he went back to summer camp on Friday.

Make sure he is very well hydrated. He should start hydrating at least a day or two prior to the procedure. And keep him drinking all the way through. Give ibuprofen/benedryl at least one hour prior to starting the infusion, and keep it up every 6 hours through the infusion (and a couple of days afterwards) Migraines and nausea are common side effects - but hydrating helps minimize that. Ask for steroids and Zofran (anti-nausea meds) that can also help with the side effects. Keep hydrating for a few days after infusion as well. (Can you tell that hydrating is very important!) Make sure they keep a low infusion rate (if you're going to Dr. B he already knows this). A few side notes: take a notebook and document how he's doing. Write down the lot number of the medication, as well as the infusion rates. I kept detailed notes as to how he felt every time I gave him his ibuprofen/benedryl. We are not an inordinate amount of supplements, but we did not stop any of our typical medications, etc... during IVIG. Just added the motrin/benedryl/steroids (we could not do Zofran b/c of conflicting other meds). Our first infusion, we saw severe side effects for about 6-8 hours within about 8 hours after the second day of infusion. It was mostly headache and nausea - but our 5 year old handled it like a champ. After that, he was tired/pale for a day or two, but then A-OK. We saw immediate improvement from the IVIG - with little/no regression from the 1st infusion. Improvements lasted about 8 weeks (at which point we were due for 2nd infusion, but accidentally scheduled at 12 weeks - ooops, and we tried to take him off one of his abx - bad move). Our second infusion (12 weeks post 1st), we saw less severe side effects about 12 hours post 2nd day of infusion, only lasting 3-4 hours - definite improvement. We did see a little bit of regression the first two weeks - but then also discovered that he was stashing meds in a hiding place instead of taking them for several days after returning home. So it's unclear what our regression was from - but he's about 4 weeks post and doing very well.

Also be aware that you can still get strep while on abx. My son has tested positive for strep while on treatment doses of multiple abx (even combinations of abx at the same time!) We always had him checked when we would see things get worse, and more often than not, he was still testing positive for strep (swabs and cultures - he's never had an elevated titer).

Early on in our PANDAS lives we had issues with impetigo. It is what triggered my son's PANDAS to start with, and we had some nasty bouts that were pretty hard to get rid of. We ultimately had to use both oral abx AND a topical abx to get rid of it (we have used Altabax and Muciroprin for the topicals). Hope this helps.

Is it possible that it's just a new infection? My son has gotten strep multiple times on treatment doses of various antibiotics - so even if it's a treatment dose of Augmentin, he may still have caught something new. After our first IVIG - we were symptom free for about 8 weeks, and then he started to decline - picked up again after IVIG #2 (12 weeks after 1st one.)

Where in Florida are you?

Dr. Murphy is in St. Petersburg, she used to be fairly conservative with treatment, abx only unless there is an immune deficiency. But more recently she has been more open about recommending IVIG. She's one of the primary researchers on the subject - so she's very knowledgeable. Just noticed that you say you found lots of researchers - Dr. Murphy, while primarily a researcher, does see and treat patients through her clinic at the Rothman Center

My son was able to hold steady at about 80% recovery before we considered IVIG. He was only 26 months when he was first diagnosed, and we were too afraid to try IVIG, steroids, or Plasmapherisis on him at such a young age. And he responded very well to abx, but everytime he would get close to 100%, he would get strep again (it was a chronic problem for us). We saw him at 100% briefly after T&A surgery in 2011 - which gave us hope. But he continued to get new strep infections and eventually, abx alone was only getting him to between 80-90%. Was he functional - yes. Completely. He went to school every day, he seemed normal to most outsiders, but he still had some major OCD - and a fixation on playing video games that was unnatural, even for a 5 year old boy. We finally did our first IVIG in April - and we were terrified that we were going to "rock the boat". We had things pretty stable - not perfect, but stable, and we were functioning well as a family. We were afraid that we would see that regression with IVIG that some people see - getting worse before it gets better and it scared the heck out of us. The night after his infusion when he was suffering with migraines and vomiting - I remember locking myself in the bathroom sobbing asking what had I done to my child. But less than 24 hours later he was at 100%. And he stayed there for 8 weeks (when he was supposed to go for his second IVIG but a scheduling mishap pushed it out another 4 weeks). He just went for his second a few weeks ago, and he's doing well. We saw that immediate improvement, and then he has regressed a little bit - but it turns out for about a week and a half he has been hiding some of his medication every day - so the doctors think he's just reacting to an exposure. It was a hard decision - and in hindsight I wish we had done it sooner. But we had to get to a point where we were comfortable with it. It was the only way we felt we were going to get back to 100% - we didn't want him to have to live with "good enough" any longer.

I would go to the friend's doctor who is willing to start abx. My daughter is allergic to penicillin and has done cefdinir, azith and rifampin with no problems. The side effects from a trial course of abx are minimal compared to other treatments for "tic disorder" so I would try it as soon as you can find a doctor to rx. My son also woke up from a nap (at 19 months old) a different child, rages, violence, OCD, etc... When we finally realized this wasn't the "terrible twos" our pediatrician decided to try a 30 day course of abx (azith) "just to see what happens". We were still referred to neurology and ped psych - but as you have experienced it takes months to get into those appointments. Our ped's opinion was that the abx couldn't "hurt" and it was worth trying while we were waiting. The effects were almost immediate. We never even went to the ped psych because the effects of the abx were indisputable. The reality is, that for most kids, the quicker they can start treatment, the easier and more fully they can recover. We waited 6 months to look for a solution to my son's issues and he is 5 now, and we still struggle with him (IVIG has seemed to work really well for us). My daughter on the other hand, also has PANDAS, but was being treated with a 30 day course of abx every time she tested + for strep prior to onset (because of my son), so her symptoms have historically been more mild, and she sees a full recovery between strep infections.

We were going through similar concerns - but with strep. No matter what we were doing, our son kept getting new infections, even when on major doses of abx. We began to suspect mold in the home (plausible after having found it in our AC system). After spending tens of thousands of dollars replacing the entire A/C unit, sterilizing the vents and even tearing out every carpet to replace with hard surface flooring - we were still worried about mold - and Chinese drywall (eventhough our house was supposedly cleared back in the scare). But like you - we didn't want to get tested because of disclosure/property value ramifications. We had one advantage in that we built our house brand new 10 years ago, and there have been at least no "events" that would cause mold (flooding, etc...) We decided that if we didn't have the strep under control by this summer, we were going to move out of the house for 1-2 months and rent somewhere else (with strict criteria) to see if that made any difference. If it did, then we would sell - and likely build new again somewhere else. If not, then we could at least assume (for the time being) that the house wasn't the problem. We wanted to wait until summer because it would be less disruptive to the kids for school, and we figured we could maybe find someplace on the beach or something and make a mini "vacation" out of it (even though we'd still be working.). My son stopped getting strep in September when we added rifampin, and he responded wonderfully to IVIG in april, so we have put our summer plan on hold - but it's an idea.

Also - check out the PANDAS Network's page - they just posted an inspirational story about a kid who just graduated HS after a years long struggle...

I can't comment on success stories for teenagers, because mine are only 5 and 7. But I can share my personal story. Both Dr. B and Dr. M have told me I likely had PANDAS as a kid. My clinical history included multiple strep infections each year (usually 6 or more) through college, hospitalized more than once for IV abx b/c they were worried about it progressing to RF when they couldn't get rid of it, etc... My freshman year of college I was hospitalized for blackouts (losing time - think Susannah Callahan in "brain on fire") but after a week in the hospital, they found nothing and I wasn't having episodes anymore. Ironically, after that, I can't remember getting strep anymore. I was also what my mother called at the time a very "emotional, challenging, and quirky" kid. They always attributed it to the fact that I was very smart, always several grades ahead of my peers in school. In hindsight - the OCD was obvious (for example as a child, having to sleep with EVERY doll/stuffed toy in the bed with me and have my parents say goodnight and tuck each one in - by name, and having to start over if they messed up, or heaven forbid one fell out of the bed during the night). I remember going into my parents bed at night well into my jr. high years, progressing to not sleeping at all and staying up all night watching TV. As a teenager I would "hide" in my closet - it soothed me. I won't even go into the strange things I actually did AT school (like carrying around a small Elmo stuffed toy to "consult" on answers with in class - yes, I seriously did this. It is forever memorialized in my 11th grade yearbook). I was very much at odds with my parents, lots of fighting and running away - but I had a very happy, stable, healthy home life - nothing that would prompt a "normal" teenager to that type of behavior. Outside of these "episodes", I was always described as a good kid, a favorite of the teachers and other kids parents, etc... so looking back, it's amazing to me how out of character some of these things were. As for some of the weird things I did - my friends just thought I was being "funny". I had lots of eating issues, revolving mostly around texture, and getting me to wash my face daily was a nightmare because I hated the way water felt on my face (or any moisturizers either...paying for that now!!!) I am now pushing 40, with 2 PANDAS kids of my own. I have been diagnosed and treated for clinical OCD (extensive cleaning and ritualistic cleaning of my house being my primary issue). After realizing I likely had undx (and therefore untreated) PANDAS as a kid - I started looking back at my childhood and teen years more circumspectly. I honestly can't say I had a bad childhood, or even high school experience. Sure, I was picked on occasionally, and had MAJOR drama with my parents especially in HS - but looking back it never seemed to me to be no more or less than a typical kid. Knowing what I know now, of course, I can't really say that anymore, I'm sure that there were many things that weren't "normal" - but I never really noticed them - either at the time or looking back. If I had to point to one thing I look back on and wonder if it's PANDAS related or not, it's that I never really had many "close" friends. I was well liked at school, and had a very active social life, but I sort of floated around among all of the different social "groups" - welcomed in all of them, but never really hanging around one group long enough to get too close. As a result, I only have one friend that I have remained in regular contact with from my ENTIRE childhood - a HS friend, and we didn't even become close until after HS graduation before we started college. The only long lasting effects I can see from years of untreated PANDAS are my clinical OCD dx and I still have sensory issues (still can't stand water/moisturizer on my face, although as an adult I am more able to suck it up on the face washing part anyway), and food textures are still bothersome. But I feel that had I had treatment, I likely wouldn't have these issues today. And let me point out - none of these lingering after effects have prevented me from leading a full, happy, normal life. They are not debilitating in any way. Heck - the house cleaning thing would appear to be a blessing with 2 kids who react so badly to getting sick!! Thinking about this always gives me hope - because if I could grow up to be a happy, functional, contributing member of society after growing up with this disease - than there is hope for my kids, who have gotten early intervention and early treatment - as well as all of the kids who haven't been so lucky to get early intervention like my kids did.

Tricia, I already posted an answer to this on the FL PANDAS page, so I won't repeat myself. But as to a PANDAS expert, the Rothman Center takes insurance (we have UHC and they take our) if that helps, she's one of the few that does. Also, it's still a drive for you, but we have an excellent pediatrician in the Tampa area that treats with long term/multiple abx as needed. Yes, he's the one that initially wanted to "wean us off" too - but saw very quickly that it didn't work (that was 3 years ago!) He's now our go-to guy when things get bumpy. I can give you his info if you're interested. Sandra

Happy he made it through. Continuing to pray for a quick recovery.

Prayers to you and your family/