airial95

My little guy won't even be 3 until late October, so we caught his PANDAS and have been treating it with some success very early. He's in the Early Steps program at USF - which is a developmental based therapy program that gets some federal funding. We chose that route because Dr. Murphy is at USF, and while the Early Steps program is part of the same college she's associated with - it's different departments. We figured they'd at least be familiar with PANDAS and it would be one less battle (our assumption proved correct!) The problem, Early Steps only covers them until their 3, then they "transfer" them to the School Districts program to get them ready for school. We had our first meeting with the school district folks yesterday and I have to be honest - I don't know what to think. First of all, if it hadn't been for USF automatically initiating the transfer (part of their policy) - we wouldn't have had a clue that we should be contacting the school district a over two years before he started school to get things rolling. They're going to do another assessment of him about a month before his birthday to see what he qualifies for (504, IEP, special ed, etc...) If he qualifies, they may even start him in a special ed pre-k immediately - the focus is on getting the behaviorally challenged child ready for school. We were lucky about the automatic transfer, because from what we were told yesterday, it normally would take 6 months (or longer) to get this initial meeting and then 2+ months after that to get the team together and assessment and plan put together. I coudlnt' imagine if we had waiting until he started kindergarden to do this! I had no idea!! Not surprisingly, no one in the room had heard of PANDAS - so we had to explain. They were very interested though, and loved that I walked in with a packet of useful info that I keep on hand for just those type of conversations (I've learned a lot from all of you guys on here!!) Actually, I mentioned the Mystery Diagnosis episode from the night before and 2 of the girls had seen it - while my son isn't as bad as Sammy was, it gave them an idea of what we were dealing with. Well, after a 2 hour meeting discussing my son's issues, needs, what they can "offer", etc...our heads are swimming. I'm still not sure the public school system is the right place for him. But my husband thinks that since we're getting in early it might not be that bad. I know a lot of you on here have kids that are older, school age and were diagnosed much later than Broderick, but I was just wondering what type of school your kids go to? What accomodations are being made? Unfortunately, homeschool isn't an option for us, but I'm still trying to figure out what's going to be best for him? I'd love to hear your stoires and exepriences with the schools - we've learned alot from these forums and it's helped us navigate our path with less resistence than we expected - partly because we're learning from what everyone else has been through!! THANK YOU!!

We have the exact OPPOSITE problem!!! Our sons OCD and ODD is so much worse at school than at home. We think its because at home he has more control over his behaviors (no one is messing them up, he can do his thing without being bothered), while at school there's 20 other kids running around, touching things, getting in the way of his rituals causing all sorts of anxiety. At home he's usually better...

Couple of points: The show mentioned 2 weeks of abx as what he needs NOW if he is exposed/gets strep. I don't think they specifically mentioned how long he was on the abx initally As for the brain damage comment - this was something that our Dr brought up to us in our intial dx as well. He told us that they have no idea if this condition (if left untreated) would cause permanant brain damage, but it is a possibility. He also mentioned that many adults who have OCD, tics, etc could have been undiagnosed PANDAS children that suffered permanant "damage". Yes - this is scary, but our dr put it as best as he could - the research is still so young that they don't really know what the long term effects or prognosis is. Another thing to remember, that both our Dr and behavior therapists have told us - OCD in children can become a "learned" behavior. The way it was explained to me is that since their neural pathways are still being constantly formed, if the OCD goes untreated, even if the irrational fears go away (by treating the PANDAS for example) the ritualistic behavior and compulsions may still remain since their brains are now "trained" that way, and they need to be "reprogrammed" (Not that I like to use words better suited for animals or computers to describe my child). This may be another form of permanant brain damage that's not purely physical. Just a thought - but overall I thought it was well done. I agree, I saw more similarities to our case from this episode than from the book. Even though it wasn't perfect - it was great for 20 minutes of national expsosure!

I'd probably TiVo or record it and watch it first. I wouldn't want to show him something that would potentially freak him out until I've seen how they covered it and could be prepared to answer any questions how they presented the material might bring up. Our son is too young (2 1/2) for it to do any good but we're still recording it and may consider having his older sister watch it to understand what's wrong with her brother. But again, we're going to watch it first before we make that decision.

http://abclocal.go.com/wtvd/story?section=...&id=7486167 Now I feel bad for all the grief I gave the lemurs last ,onto...I guess they needed the money.

Noe I feel bad for all of the grief I gave the lemurs last month, maybe they really needed the money!! http://abclocal.go.com/wtvd/story?section=...&id=7486167 A friend posted the article to facebook cause it happened at her kids school. I just thought it was good for a laugh on a Sunday night!

It is sad that this is why people would sonthese things. My own sister skipped my college graduation, moving away party (when I moved across the country), bachelorette party (she insisted on throwing it at a bar I wouldn't be caught dead in and then left after 20 min), and didn't show up for my wedding until 10 min before I walked down the aisle even though she was a bridesmaid. Now that I have kids, she barely sees them (even though she still sees the girls she used to nanny for practically weekly) Her reason? She can see those girls no problem but it's painful to see her own niece and nephew since she "can't have children of her own" - even though no dr has ever told her that and she's never tried to get pregnant. Anything that's not about her or can't be turned to her is not worth her time. Were throwing my mom a surprise 60th birthday party today, I organized and paid for everything, my sister is bringing one dish - guess who'll take the credit for the whole thing? Fortunatly she's never opened her mouth about PANDAS cause she knows she doesn't know my son well enough to know anything about him. Myhusbands aunt on the other hand, vie just been waiting for her to say something in front of me. I know my MIL will back me up on the PANDAS thing because they were here for 6weeks right before we got the dx, so they saw the absolute worst of him!! Just hang in there and remember, even though you're not personally trying to find the cure for cancer just so you can be on the cover of time - you're a better person. And you are the world to that child who is counting on you to helpmhim through this, and to teach him how to deal with people who would judge him so unfairly.

I dont know you or your family, but Your SIL sounds a lot like my sister and my husbands aunt. They're very generous and giving people, will do anything for anyone but they seem to do it more for the attention that they get as a result. If shes like them, Discussion about your son's condition takes attention away from her, and since she has nothing to add she has to dismiss it entirely so attention can turn back to something about her or that interests her. There's not much you can do about it, but what you're already doing. I hold my tongue about A TON of things in front of my husbands aunt because I adore my MIL and she hates conflict. But his aunt is also a lifelong educator and has also made comments to my SIL about whether or not we're making this up. She hasn't said anything in front of me yet...maybe when we're upnthere on vacation this summer!

He's only 2 1/2, so he is very young. I'm still reading the explosive child, but I always seem to find a way of getting at least something out of him. At his age, finding out it was that the room was "yucky" was pretty huge. We're working ourselves up to a definition of yucky. I'll have to look up that other book, that might help us too. He's very bright, and knows that something "wrong" and gets very upset with himself when he loses control, so maybe the book will help him identify. Without Dad here tonight to take the edge off I was just losing it! I just hope he's not getting sick, he went to sleep waaaaaaaaay to easy, and it makes me nervous. I probably should just count my blessings and enjoy the quiet huh?

Where did you get the press release?

So daddy went out ot town this morning, and all was going well. We had a great drop off at school, life was happy. I go to pick him up and he's in the conference room with the director in the midst of a HUGE meltdown, had been going on for over an hour. All we could get out of him was his new class room (that's he's transitioning to) was "yucky". It took me another 20 min to get calm enough to take him back to his room to get his things,but when he saw he new room, he freaked again. Did all I could to get his sister and get out of there. In the car, he went from compete nonfunctional to " please mommy can I have my window down?" all sweet and nice. The rest of the night it was that off and on, one minute out of his mind, the next as if everything was fine. The only solace I had was that he went to bed with NO issues and fell right to sleep, I think he was just so worn out from all of the raging. The funny thing is, his teachers said he had a perfect day until they tried to send him next door, then he stopped at the threshold and flipped, just like a switch! He LOVES the other classroom and can't wait to be there all the time, so this was really weird. We all suspect someone in his class likely has strep, and we'll find out in the next couple of days, but even if that's the case, it doesn't make it any easier. He meet a the new behavior therapist tomorrow, so I guess she'll see what she's in for. Sorry, just needed to vent, I think Now that he's asleep I'll open a beer and try to relax. Let's just hope he stays asleep.

It sounds like you did great, but I would probably still get a lawyer on retainer. In my experience with child services, it unfortunately doesn't stop with one vista. Hate to be negative, I twndto be a worry wart, and I like to be ready for everything!

We started to see improvement after about 1 1/2 - 2 weeks on azith - but that's where we started, we didn't have any steroid burst or other abx. But your timeline on azith matches ours. Our improvement started small - like yours - flashes of normalcy. My son is still very young, and I remember crying like a fool when I was leaving day care after 2 weeks on the azith because for the first time in months my son handed me his banana and said "Mommy - you open it". The day care director also started laughing and crying like a fool when she heard this. As stupid and normal as it sounds, we had gone through about 5 monhts of increasing anxiety about our breakfast rituals and not even Mommy, or anyone else for that matter, was allowed to even touch any of his food. Most likely contamination fears - but he's only 2, so he couldn't really communicate that with us - but if someone else touched his food, or even got too close, he would pitch a fit and refuse to eat ANYTHING else that was in front of him. For us, the "shining moments" were the first sign of improvement, but we still had issues. The first symptom to subside was the rage though, he slowly became less and less angry. After about a month on the abx, we were down to only 2-3 rages a week - and they were MUCH shorter and far less violent. After 4 1/2 months, we only see rages when he's been exposed to strep (which seems to be going around like crazy right now) and we're about 90% back to normal on the OCD and ADHD. So we're completely functional as a family again, with just some minor hiccups along the way (which anyone with a 2 year old would expect). I know I've read lots of other parents on here that have had to try various abx before they found the one that was "right" for their child - hopefully you've stumbled on what works for you now!!

My son is still in day care, so we don't have a 504 as of yet - but we do have a plan in place with the day care as to how to handle, and all of his teachers and those who come into regular contact with him have been taught about PANDAS. One thing our school has done is notified every parent in my son's class (and my daughter's as well - even though she's non-PANDAS - what she's exposed to, he is too!) that they MUST notify the office if their child has strep. With my permission, they included information that there is a child in the class (no names) who has an immune deficiency that makes strep especially dangerous for him. It's the school's policy that they be notified when a child has something contaigous so they can post a warning for the parents in the classroom - but they felt going an extra step and communicating directly with the parents in his class would be useful. They'll be renotifying parents every 6 months as he moves classrooms - eventhough most of the kids are all the same. This might be something you want to have included in your plan. We also have the teachers filling out a very simple evaluation form every day (grade him on a scale of 0-9 - similar to Buster's system) on various behaviors so we can continue to monitor his progress. In doing that, we've been able to identify when someone in the class have strep even before the other child gets sick. Even his teachers have noticed the patterns. If your son isn't old enough or capable of telling you how he's doing, you might also want to ask his teachers to do this as well. Although I haven't dealt specifically with the 504 (yet) - these might be helpful things to consider.

My sons PANDAS dx was a result of an impetigo infection. Our dr treated it with altabax but no oral abx at that time. So yes - impetigo can start it all!!!

Airial95, Thank you so much for your response b/c until I read your post, I wasn't sure what form(s) impetigo took other than a rash. Did the pimples pop? Did you happen to have the pustule tested? We didn't have them tested. On my daugter they didn't pop, she got it on her face primarily around her mouth and nose. It looked very much like acne, which is odd for a toddler. The bout that spurred my sons PANDAS was a single pimple on his wrist (which is why we suspected a bug bite). His became so large and swollen (like a golf ball under the skin) that we had to put warm compresses on it to eventually make it abcess - it was very gross when it finally did. With all of the breakouts, our dr had us using altabax and no oral abx. It cleared up in a day or two with the altabax. Ironically, when my son was first dx with PANDAS and started his azith, our dr has us applying altabax to his nostrils for 10 days. He said that strep bacteria can hang out in the membranes and it won't be killed by the oral abx. I wonder if that's why impetigo is so common around the nose and mouth too?

I don't think you're crazy - I don't remember reading a specific percentage, but I also thought that I read that "most" children will outgrow it. This is the same information we got from our Dr. - he said that "right now" they think that "most" children will outgrow it by their early 20's - about the time their immune system fully matures. However, he also noted that the research is still far from conclusive, and since they've only started really studying it 10+ years ago it's still way to soon to be able to say whether they outgrow it or not. (I thought that was a really good point myself - if we are still in the "infancy" of research - it's really going to be what happens to OUR kids that will show them how this all plays out!) Our Dr also will be the first to tell you that he doesn't know everything there is to know either. (Although - I have to admit, with all of the time I spend on here and reading all of the various papers and info provided by parens who see Dr. K, Dr. T and Dr. L - our simple little pediatrican seems to be fairly on the ball with what's up - I can't complain!)

Both my kids have had impetigo several times, and it was always a pimple, sometimes more than one, but it always looked like a pimple instead of a rash

I don't know about testing the puss, but our sons PANDAS was triggered by impetigo (strep infection of the skin) and it looks just like a bad pimple or bug bite. With his infection that triggered the PANDAS we originally thought it was a bug bite as well, but ultimately took him to the doc when it got so swollen and found out about the strep. My sons major symptoms are OCD and ODD. Usually about 2-3 days before someone presents with strep, we see a jump in the ODD and an increase in the severity of his rituals. So in a nutshell - yes, impetigo can bring on symptoms!

I still can't get into our direct page from either my home PC, work laptop, iPad OR smartphone. The site is just too bogged down. (I'd like to hear Pepsi still try to say that it's my fault!) However, I have no problems getting to and voting directly from the search page. I've provided the direct link to the search page (with our supported causes already pulled up) for all of my friends and family who are regularly voting and asked them to remove the prior link from their favorites and add the new one. It's worked well so far. Unfortunately I don't have the option of firefox on my work laptop, iPad or smartphone - so I had to find the workaround.

Brandy, I have the binder started too with all copies of his blood work, doctor's reports, notes from meeting with or speaking with dr.s and even print outs of some of Buster's posts and good articles on PANDAS to share with others who are looking for info or for uneducated docs. I think it is invaluable and I love being able to refer to things in seconds. I have a similar binder, but it also includes all or my monthly tracking reports and I've taken it to every appt. As soo as I get the laptop fired up today I'll email out the spreadsheets!!!

Thanks!

I agree with you, and I usually enjoy his columns. I especially agree that there is likely more to this story and the OT's dx. While SID is not definitive, this column attempts to boil down what is a very complex issue into a dismissive soundbite. Thereare many people out there who would use the same "speculative" definition to describe PANDAS. It would have been a much better column if there would've been an acknowledgement that while it may not have been the case here, it doesn't make sensory issues nonexistent. I was in a really bad place when I read that and it really pushed the wrong button for me!

I took busters concept and created a yearlong tracking sheet that will track daily, weekly, monthly and ytd progress based on symptoms you want to track. I also have a separate file that's linked to the log file that creates reports to send to our dr. It keeps a numerical score as well as anecdotal notes so you keep a full picture If you PM me with your email address I'd be more than happy to send them to you

Our son is only 2 1/2, and as such, our Dr has not ordered any blood work for titers or anything else since our dx. He's been on abx for over 4 months with DRASTIC improvement, and our detailed symptom tracking has shown definitive spikes in symptoms at the time of strep exposure 4 times. Even with 2 neg. throat cultures - our Dr is convinced (as are we) of PANDAS. He's not ordered blood work at this point b/c he says that at my son's age there is a very high liklihood of false results 50/50 at best - so if we have all of the other clinical evidence to point to PANDAS - the bloodwork may only confuse the issue. As he gets a bit older and if things stop improving (or heaven forbid get worse) we'll likely do the tests then. I can understand and appreciate that. I've also gotten the opinion that blood work for immunity isn't completely reliable at his age from a few other dr's and nurses (not that I don't trust my dr - I love him!) My question is about the CamK test. My Dr has heard of it, but readily admits he doesn't know enough about it to know if it is reliable at this age or would have some of the same issues as the others. Does anyone know?