airial95

While this isn't related specifically to PANDAS - I know I've faced that perception many times. I'm just an overindulgent mom with a spoiled brat kid who needs nothing more than a good spanking. Maybe this child didn't really have a problem and was just playing her parents - but to entirely dismiss SID as nonsense? That's a bit of a reach I was already in a really bad mood yesterday when I came across this...it didn't help. http://www.theledger.com/article/20100601/NEWS/6015017

I know he's going to be exposed- can't keep him in the bubble! And even on the low dose abx, he'll have a 2-3 day flare up of issues when exposed. But I think last week might have been SOOOOOO bad because he was completely OFF the abx and exposed at the same time. I know that the other mom's comment shouldn't have bothered me, she was honestly trying to be helpful - but just coming off of our horrible week like we are, I admit my patience was still a bit raw. And there are just so many things that rubbed me the wrong way - first: it's our school policy (not just for my son) that the parents inform the school that their child has something contaigious so they can post a note for the other parents - she didn't do this. Also, the school has asked all of the parents in both my kids classes to please inform them immediately of a strep diagnosis b/c of a child with extreme sensitivity (they didn't identify my son). But even worse, she's one of the few parents who know the details of our struggles. Primarily because her son was also a TERROR in school for a very long time, and our first instinct when Broderick flipped was that is was learned behavior from watching this boy. While my husband and I from day one were trying to find solutions to solve our kids behavior problems with the staff, they always looked the other way about their child - a boys will be boys attitude. It wasn't until the school suspended their child (yes - suspended at 2!!) and they told the parents that if they didn't do a full behavior assessment and put a management plan in place, they would be kicked out did the folks finally do something. This mom and I had commiserated many times over our boys problems, and as soon we realized how well the abx was working for Broderick - we mentioned it to her. (She even acknowledged that he's always more mellow when he's on abx for ear infections) Turns out, they discovered through the behavior assessment that her child is autistic. He's doing much better now working with therapists 3-4 times a week at school. I guess I figured since she's going through similar challenges she would've been a bit more sensitve and not so non chalant about it - saying we "might be interested". Might be? OF COURSE!!! Just needed to vent a bit too - thinking about having to go through that experiment again anytime soon is not a happy thought.

So, I posted last week about our failed experiment taking our little guy off his abx for a few days. Complete disaster -full on return of the beast. Well - today, I found out from another parent that her son had strep last week! They found out Friday and that's when he started his abx. She didn't bother telling the school since it was a long weekend, but she thought we might be interested because of "our situation". Interested? Yathink? So now, we don't know if his return to ###### was from stopping the abx or his exposure to strep! Our dr said we'll need to try to take him off again to see. I told him no way - not yet. We need some recovery time after last week and Bummy is still torqued pretty high yet - but much better and improving daily. He understood, and agreed. I don't know what's more frustrating - having our experiment all be for naught, or having that mom refer to it as "our situation"

No worries, I just wasn't sure what our deal was and was trying to keep an eye out! I knew you'd have the answers. You rock!!

Vickie, I just saw some free to be comments on the top banana page (#1 in 50k right now) - try may be from last month. But there was also at least 1 lil iguana vote listed there from this evening. Do we have an exclusive agreement with those guys? Sandra Correction: lil iguana has also left comments in nos 2,4,5,6,7, and 10 in our category. It's the same person, so I don't know if they're fishing or what...

Brilliant!!! They haven't published it yet (my comment) and wonder if they will the last published comment was yesterday. It was there when I read it about an hour ago!

I am not a patient of Dr. Latimer's, but I think this is a beautiful and touching show of support and appreciation. Great idea!

We just did a "week off" to see if he still needed it for suppression, since he's been doing so well. WE DID!! By Thursday he was a mess. The teachers at school were looking around to see if any of the other kids were sick, because he always reacts when exposed. He was back on abx by Friday. We thought for sure that it was taking him off the abx that caused the problem. Unfortunately, I was notified today by a parent who knows about our son that her son had strep last week and started his abx on Friday. So his flare up coincided exactly with the same timeline as his other exposures! So now we don't know if it was coming off the abx or the exposure that made things worse last week. UGGGGGH!!! Fortunately, our dr did a throat culture that came back neg and put him back on the abx anyway - we're almost back to where we were before our failed experiment.

My son reacts even when on abx, but usually the days prior to the strep infection being discovered, by the time the other kid knows he has strep and gets on abx himself, my son has come back down. Depending on how bad your flare ups are, I probably wouldn't risk it...

Wasn't trying to make anyone jealous, just wanted to point out the good things that are happening that you may not have heard of!

I saw it getting ready for my SATC2 girls night and set it to TiVo. Haven't watched it yet, but my husband did, and then saw "obsessed" on A&E and tivo'd that too - he said it's scary to watch.

I'm reading all of this with great fear. We have a couple of years before pre-k but we have a meeting with the school districts early intervention program for his OCD. He's in the federal Early Steps program now for his behavior therapy, so the transition should be easy, but I'm hoping by being a part of the school districts early program we won't have these problems when it comes to the 504.

I've changed the link that I'm posting to facebook/email reminders to take folks straight to the search page that lists our 10 causes. It's an ugly link, but for example http://www.refresheverything.com/search/?q...p;ic=0&im=0 This takes them directly to our list from this morning...and makes voting super quick!

He's only 2 1/2, so we really couldn't count bedwetting as a symptom, but he was magically potty trained instantly since he went to the potty constatly - turned out to be the frequent urination thing. Ironically, when on the abx, he's been more age appropriate with his potty habits - more accidents when he's distracted and playing. It was mostly behavioral - he hasn't had any tics. He turned very violent, very suddenly one day, and it just escalated from there. We did notice that while he's an excellent sleeper, he would sleep 11 - 12 hours a night (no nightmares, snoring or restlessnes) and nap for 2-3 hours a day, he still always looked physically exhausted - which led our pediatrician to believe that there must be some sleep disturbances interfering with him getting to REM sleep. He also drastically regressed verbally and had some motor skill regression - ie - couldn't /wouldn't use silverware where there wasn't a problem before. His main symptoms were ODD, OCD and ADHD. Once he started the abx and the ODD decreased significantly, we were able to also see more clearly that many of the rages and tantrums were a result of the OCD.

My safari on my ipad has stalled up from time to time...but I figured it may be the size of the page vs. the wireless connection

I'd like to shed some light on the positive. My son is only 2 1/2, diagnosed with PANDAS in January by our plain old family pediatrician. It was the first time we'd ever heard of PANDAS - we hadn't even been searching for an answer outside of "his age" at that point. He diagnosed him based on the abrupt behavioral changes (which he even observed) and an impetigo infection a few months before the outbreak. He did a throat culture - which was negative - but still suspected PANDAS since something like 20% of throat cultures come back negative (esp if the child is a carrier - which he suspects my son may be). He opted to "try" antibiotics to see how he responded - and go from there. Luckily, he responded VERY well and we noticed significant improvement on the abx alone. At this point, we haven't done any blood work on our son, our pediatrician also noted that many of the blood tests ordered for PANDAS also have a high "false" postives/negatives in children as young as my son - so as long as he's responding so well to treatment he doesn't see the need at this point. Our Dr is an older gentleman, and this may sound incredibly age-ist of me, but we were shocked at how much he knew, how much he was also willing to admit he didn't know/was unknown about PANDAS. He's seen and treated several cases, and even his nurse recognized the potential PANDAS dx. For a Dr his age, and at his stage of his career, we are extremely blessed to have one that has stayed so on top of the cutting edge of what's going on. He was the first to admit that diagnosing these things in someone so young is tough (our son has presented with ADHD, OCD and ODD) since all of these things are "developmentally appropriate". And we even had several discussions with him about how to control our son's behavior in the months leading up to our diagnosis - thinking it was just the terrible two's. But ultimately, our son just "wasn't normal." After starting abx in January, we've been on them consistently (with one break last week to see if they were still needed - THEY WERE!) and have almost all of his symptoms under control - with just a little risidual OCD (which is just slightly worse than "normal" for his age) and ADHD (which our Dr says may or may not ultimately be related to the PANDAS). But the ODD, emotional rages, and severe OCD are gone - only rearing their heads for a day or two when exposed to strep. He starts behavior therapy this week to help with the residual OCD and to cope when he "flares up" I wanted to put all of this out there to assure you that there ARE Dr's out there who are paying attention - and the hard work and long roads that many of you have taken before us that are "new" to the club is working! I recognize all of the suffering and struggle many of you must have gone through looking for the dx that fit your children, and eventhough I've been "lucky" to come by an appropriate dx quickly and relatively painlessly (just 4 months from first onset of symptoms) it's mainly because of folks like all of you who have worked so hard to get the word out, and having a Dr who doesn't think that they know everything and is still willing to listen and learn! The word is getting out, and you should all be proud that your efforts have saved at least one family (mine) the pain and heartache of an extended search for an answer. I know I am thankful for all of the insight and knowledge you've all provided not only to me - but to the masses in trying to make our kids voices heard.

I've been posting a different link to my facebook/email requests for votes - instead of our direct PANDAS page - its a direct link to the search page that brings up PANDAS: http://www.refresheverything.com/search/?q=Pandas It's super quick, and you can vote from there without having to load the entire page. I agree that it's nice for people to see our story and know what this is all about - but most of my folks I'm pushing to vote - I've been pushing daily for a month now. They know, and just want an easy way to vote.

Absolutely!! I'm offering him up for 24 - 72 hour abx free visits for all non-believers!! What's hysterical - is he was so bad on Thursday, day care started looking for other kids in his class who may be acting sick, since we've all noticed a spike in symptoms when he's exposed to strep. (We didn't tell them he was off abx b/c we wanted them to be completely objective in how they logged him daily.) When I told the director on Friday that we were off to the Dr and he'd been off his abx - it was like a light went off above her head - that's why he'd been so horrible. I can't tell you how thankful we are that our pediatrician believes in long term abx for treatment and we don't have to fight that battle.

Remember, you can vote from the search page without loading up the PANDAS page directly - that's what works best from our home PC. Also - if you vote from the facebook app, you can still vote using your email address from the site. I don't know why. My father also said that the other day he was able to vote several times in the same day by "refreshing" his browser. When he tried to show me what he did - it didn't work - so either it was a one time glitch, or my dad is just an old man who doesn't really know what he's doing (I love my dad - but I'm pretty sure it's #2). Vickie - question about the proxy voting - Each person in the household with a valid email address over 13 still gets a vote right?

I don't get how there are really people out there who don't believe there is such a thing as PANDAS. Our Dr. took our son off of his daily dose of azithromycin last week as a trial to see if it was really needed for suppression. It was a DISASTER!!! By Thursday, they had to completely remove him from his class at day care becase he was so violent. On Friday, we were back in the Dr and back on our azith. It's now Tuesday, and hello - almost normal kid again!! We're still having some spatial anxieties and other anxious moments - but if our previous experience means anything, those will also subside in a couple more days. But needless to say, he's no longer channeling the devil. For anyone who doesn't think that PANDAS is real or that long term abx will help - they can have my 2 1/2 year old for a sleep over a few days after he stops taking his abx. That will make a believer out of them!!!

So, after three days, we're going back to the dr at 1:15. Yesterday was a terror!!! He was in a nonstop violent rage. When I mentioned to him that I was going to call the dr, my little 2 1/2 year old, in his little 2 yr old speech impediment says "I want to go see dr freidmeyer so I can talk to him about feeling yucky" I know he'll put us back on the abx, I just hate that we had to go through this!!!

I could be wrong - but when he first dx our son, his throat culture was neg and that didn't seem to phase our ped because he said that something like 20% of carriers will also test negative on a throat culture. He pointed to a more recent impetigo infection (2 months prior) to our PANDAS outbreak as the culprit. He put him on abx to "test" his theory and he was right! 4 mo of abx has done wonders for our boy. So I'm pretty sure that some carriers won't have a positive throat culture either...

Our Dr reduced the abx dose a couple of months ago, and we didn't have any bad effects. I guess we're luckin in that our ped acknowledges that we may be on suppressive abx for an indefinate amount of time...but I'm just already worried. I logged his day care reports into our spreadsheets this morning and yesterday he was already back up into the 90's (out of 160) - yikes! Our little guy is suprisingly verbal for his age. He can tell us when he's feeling "yucky" or "black" as he sometimes calls it. What we notice most when he backslides is that he gets LESS verbal about what's wrong. We're still getting feedback from him (which is good) but it's already much angrier. I know we have to hang in there and see what happens - but it's still stressful! And just before a holiday weekend! YAY!!!

Our little guy has really shown tremendous progress. He's been on Azithromycin since January and while I wouldn't say he's acheived a FULL recovery, h'es pretty much back to normal. The only thing we're left dealing with is the ADHD (which our pediatrician is not entirely convinced is PANDAS related - he think he might just be ADHD) and residual OCD. He's starting therapy for the OCD next week, and honestly, most of his OCD rituals and triggers are not so sever that they're interfering with functioning (he still needs to open doors himself, breakfast needs to be just right, but he can self sootheif the situation does not go just right and he'll "start over" if needed - a HUGE improvement for us). Anyway, our Dr has been renewing his prescriptions every 20 days with us giving him detailed status updates (including a supercharged version of Buster's charting system that my husband and I modified for use with a 2 year old). The last 6-8eeks he's been faily consistent - with only 3 small (2-3 day) spikes in symptoms when exposed to strep. The last 2 weeks have been a joy - he's been a normal, healthly, little boy - even his residual OCD has taken on more age appropriate characteristics. (Let's face it, at 2 1/2 - most kids have some OCD). Based on our last update on Monday, he'd been over 10 days with scores in the teens and twenties (out of 160!). Based on that, our Dr has opted to take him off of the abx. He did admit that it may be temporary, but said that we should take him off periodically to assess if its still needed for suppression. I can't really fault his logic - but it's still terrifying - things have been going so well - why mess with it. We've not told his teachers that there has been a change in his treatment, since we don't want that information to skew how they assess him every day. Well it's only been 3 days off abx, he had a bad day on Tuesday - with some violence and aggression, and again Wednesday morning was rough - although the teachers did say that he improved after nap. This morning, we got our first glimpse of the monster returning trying to get him ready for school - nothing was right - everything was broken, and he wouldn't get into the car until he went off to find rocks (a ritual he used to do quite often.) I'm thinking I've already seen enough to call it quits - but all of his other "spikes" in symptoms lasted only 2-3 days, so I'm thinking I should at least wait another day or two to see what's up. Has anyone else gone through this? How quickly after the abx did the symptoms return? I thought Azith stayed in the system for a while so I didn't know how quickly we'd see changes...

We have about 10 votes/proxies in our family with another 20+ strong voting everyday. That doesn't include what we call our casual voters - friends who vote when we remind them or bug them... We'll be shooting to log in right at midnight on the 1st to get our first votes in -hopefully that will help!! Remember, if you vote using the Facebook app to vote, you can still use you email address to vote on the site too -it's a 2-4-1!