thereishope

The psychologist told me my son's OCD had different characteristics from classic OCD as well. I actually found this very reassuring and I thought helped "prove" to those who told me it was classic OCD, possible bipolar,etc that it wasn't. The only reason I really continued to meet with the psychologist once a month was to have her offically put it in my son's med records that he was getting better w/o SSRI's and w/o CBT and to show how he was shedding the remaining problems. In the future, I didn't want anyone to say that I was seeing the improvement through "mommy eyes" and making things up.

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Yeah!!!!!!!!! So is anyone else like me and when they see a stuffed panda bear at the store, they just can't look at it? My daughter has Littlest Pet Shop toys and has a panda bear. I just hate that thing!

Welcome. It seems like it is actually not often for a PANDAS child improves on amoxicillan (let me add some do but not often). Here is an article that is posted a lot about the failure rate of amox in erradicating strep. And a lot of kids need at least a month of the abs before they see good improvement. http://www.entrepreneur.com/tradejournals/.../169459644.html Some PANDAS kids do not react well to psych meds but I don't suggest just pulling him off everything. But eventually, adjusting his dosing and lowering it may be something to consider. I think right now your main goal is to get the ped to change the antibiotic. Some good links here for more info on PANDAS are... Fact sheet http://www.latitudes.org/forums/index.php?showtopic=6265 And FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

Do you think that one the PANDAS "heavy weights" speak at the Autism One Conference, more funding will come the PANDAS way? So, Murphy is doing Cefdinir now. Geller is doing Cefdinir/Augmentin in Feb. Then what is the spring one entailing? Is that the Cefdinir/Augmentin or a different one?

I have stories that can be attributed to meds and some to other intervention. Like when my son, during an exacerbation that included very physical rages, was on the verge of a physical meltdown that was going to include hitting,kicking, etc.... I picked him up and he raised his hand to hit or punch me. In mid air, he stopped and lowered it and didn't try any harm to me at all. That was totally the success of meds. It was at that point I knew recovery was possible.

I have no idea what the status of this is. I don't know if it's still a possibility or if it is now defunct. http://www.latitudes.org/forums/index.php?...ic=5918&hl=

I may totally off here but does anyone remember reading that Swedo was interested in an IVIG study?

I didn't even know they had a MMRV combo vaccine. My daughter was born in 2006. Thank goodness they didn't give that to her. I live in Ohio and I don't even know if a second chicken pox is required. When I took my 6 year old PANDAS son to the ped, they wanted to give him a second one and I refused, but it wasn't mandatory. We had an increase in chicken pox I think 3 years ago around here involving a lot of 7 and 8 year olds. So, when I read that it's suppose to last 11 years...well...that's interesting. Does anyone know if the MMRV is standard now? With the recent publication telling docs to combine all vaccines that they can, that one may be on the rise. Heavy sigh.

It's not recent but it was the one of the first things he overcame. It was with his first exacerbation. Big fear of germ, dirt, contamination. It was right after XMas. He pretty much boycotted all his toys, including what he got for XMas becasue his sister eneterd his room and he saw her touching a battle coach toy (form Imaginext Castle). Well, one day I decided I'd try to get him to play. He was adamant that he wouldn't. It caused anxiety and a semi meltdown. Finally, I lost my cool and figured I make him do it. I grabbed the battle coach, grabbed his hand and put that toy on his hand and closed his fist around it. Well, boy that was a mistake. All heck broke loose. So, he eventually calmed down, I was crying, well, you know how it goes. I realized I really messed up and I just totally reinforced his fear and possibly made it worse. In hindsight, I should have waited a day or two, but indtead I pulled that toy out og his room along with the rest of the castle toys. I placed them on the living room floor. He just stared at them. He didn't want to play. I picked up that battle coach and told him to please put one finger on it. It would be okay. I showed I wasn't getting hurt by it. I somehow got him to let me hold his hnad agian and I placed one of his fingers on it. I waited for the anxiety to go down and them then put another and another. before I knew it he was holding that battle coach. And then I was sitting there playing with my son! It had been months since he did that. From that day on he was still hesitant about the toy, but I learned to take them out of his room so he wouldn't feel overwhelmed by the other toys and just leave them in the living room. I'd walk away and sooner or later he sit and play. One time I even got him to continue to play even though his sister sat with us. granted it lasted less than 5 minutes, but to him his sister was conatminated. It was a miracle. That was also how I learned to approach his OCD in baby steps and to wean him off of it. Today, that same boy plays with all his toys and even his sister's toys and in his sister's room! The same room he couldn't bring himself to pass w/o spining in circles or holding his breath. Miracles happen and it is amazing.

My son, even at 6, is a smarty and knows how to get what he wants. He doesn't want to "waste a wish" so he lies and tell us his brother wants it on his list. This in hopes that we get the brother the item and they will eventually share. And he will ultimately get more of what he wants.

Murphy is doing an antibiotic study. Geller is starting one in Feb.

My son was 5 when we were going through all of this so I know it can be hard to tell when they are actually back to baseline. I would get strep tests for everyone, including adults. If your son responds to exposure as well and someone in the family has asymptomatic strep , it will affect recovery.

I can relay my own experience. Whne my son was recovering from a strep induced exacerbation he had a big setback. It ended up being allergies. Because it was so soon after strep and his body was not healed, that sent him over the edge again. Is Dr L confident that the strep has been erradicated from his last infection? And do you chart when the exacerbation are strep vs non strep and how far apart they are? Finally, do you do thinks like strep tests on family members when he has a big exacerbation?

BS refers to comments made by ignorant doctors who say PANDAS doesn't exist.

I remember someone saying that the brand of Zith their child takes make a difference though.

Well, you kind confused me:) I know some have said that there are regions where one should not take Zith/Azith since some strep strains there cannot be killed by it...because of the area. Then there's some who say that there is a resisant strain of strep in their area (I think in CA) and they ideally should take Zith/Azith. So, I guess the regions and what abs should/shouldn't be used need to be listed.

I think one is brand name, one is generic.

If you know of an area or pocket that has a strain of strep that is resistant to Zithromax or Azith, can you please list it? I live in Cincinnati which is in the Ohio River Valley. I think someone said this is an area w/ strep that is resisant to it? This may be benficial to others since many often suggest that antibiotic.

I found out all 3 of my kids are asymptomatic. It makes things more stressful.

The majority of my son's OCD was compulsions that were not linked to obsessions. He didn't think if that he didn't get the cup out of the cabinet a certain way that he would die. He just needed to get the cup out that particular way every time. The psychologist said that does happen with OCD. It doesn't always have to be linked to an obsession. He had a lot of rules in his head.

especially since it' s your mother and not your mother in law! That didn't go so well for me with baby #3. Oh, boy, that was a long month.

My son had an experience when he went to speech therapy at the elementary shool while he was still in preschool. They were walking back to meet me after the session ended. Mid way back he freaked out because they walked up a different set of stairs they always do. I mean this was a full fledge meltdown in front of everyone. It was awful. Even when I tried to calm him down, he just continued to freak out. It was that unbending, unflexible part that you described. It just wasn't what he was expecting. He expected the other stairs. It was at that moment we started "warning" him of changes in regular routines (when we could warn him). Eventually it was no longer a probelm and eventually we no longer had to warn him. yes, i do feel for him that it wasn't what he had in mind for the next playdate with this kid. it's just so extreme and so non-bending - not even entertaining the thought of bending. yes, thank you - maybe we can conquer something similar and that can be a reminder. thanks!

Ask for a nanny. Glad to hear your appt went well!