ajcire

I just went to post the link on Online-Sweepstakes.com and was pleasantly surprised to see someone else had already done it.... Wow... it's amazing to see this showing up in places!

I agree... it doesn't sound like he was a carrier..sounds like he had strep that got missed.

I'm assuming Dr. Cunningham knows you guys made it this far? So she can get her supporters out and voting?

Is there a significance to the 17 day steroid burst? Is that a common length of time for one to be done?

Great! You guys did an awesome job with it regardless of the outcome! Here's to lots of votes!!

My son sees things in patterns too.... always has. We always say it would be be amazing and scary to be inside his head for a bit.

Norcalmom, my son is in second grade and very bright in math as well...and is totally annoyed at having to show his work.. but his teacher has drilled in to him that unfortunately on the stupid state tests if he doesn't show his work he will lose more than half credit even if he gets the right answer.... they are doing multiplying right now and he has to draw a picture, write an adding sentence and then write a multiplication sentence... He keeps asking why he has to do so many steps for a one step problem. His teacher said that the way they have to do the math is usually frustrating for her bright students. His teacher knows it's crazy but knows she has to teach to the test. I don't fault her but those stupid tests are making my kid have to take steps backward.

Susan, glad it was a good experience so far for your daughter. Crossing my fingers and toes for you!!

I'm not sure I really know what it is but I know that when we went to the neurologist the neurologist held out his fingers and told my ds to grasp them as tight as he could.... after that is when he told me that he has the milkmaid grip... at least I think that was what he did to determine it. It had to do with him tightening, then loosening, then tightening, then loosening his grip I thought but I could be totally wrong on this. The milkmaid grip was not a tic though I don't think.

Susan, of course it's possible to have pink eye without strep (I didn't mean to panic you) but there is definitely sometimes a connection...The dr. implied it was sometimes the result of untreated strep which in the case of my son would make sense because I didn't know about pandas at the time to go by tics or behavior and he never shows typical strep signs so of course I would miss it... but he only had pink eye one time, positve strep cultures other times as well without the pink eye.

I don't know anything about IVIG so no advice there.... but I can tell you the first time my ds tested positive for strep I found out incidentally that he had it... I took him in for pink eye and the dr. said she was going to just do a culture because sometimes pink eye is the result of strep.... sure enough, he was positive.

LOL Tantrums... it's a whole different world here

I still don't understand this really... if we don't know it just stayes elevated for a while after we don't even know if we have anything we should be treating right?

Is it still considered pandas if there really is no strep connection? or is that what pitands is? Have you actually ever had him cultured? I would never have known my son had strep if I hadn't just asked for him to be checked one day when everyone else in my house had it..... it was before I knew about pandas or I would have asked for him to be checked based on behavior and tics but at the time I didn't realize it could be connected. I was surprised he tested positive when he had no sore throat or fever. He has had negative cultures before but has had several with no typical symptoms of strep.

Assuming you believe strep to be the trigger despite the low titers I would think the other reason is to try to prevent the strep in the first place. My son has had high titers and is on prophylactic antibiotics right now and the reason I have for him being on them now is preventative. That and from my understanding low titers doesn't rule out strep since many of these kids don't have the rise in titers even with clear strep infections. ' That's good to hear. I still feel like I'm constantly trying to justify what we're doing with dd to others.

Just curious. Is Dr. B a Pandas doctor? I was understanding it that he was an immunologist who was willing to treat pandas children with IVIG but really based on the pandas dr's recommendations? I guess I didn't think he would be the one prescribing it unless it was for an immune deficiency he saw? Maybe I am not understanding that right though?

Peg that does makes sense although I don't see that so much with my son. His camk was 141 though.. I know that's only in the mid range... wonder if the really high camk kids have more of the extreme noticeable ocd?

I think that is very true.... it is very hard to have a good gut feeling on what to do with the inbetween kids... My son is sooo mild compared to what I read here. He has a minor throat clearing and a minor eye blink... his teachers said they have not seen it at all at school. He had past minor ocd... so minor that it came and went before I even knew what pandas was.... Sure I think he has some other possibly ocd related things he does but really, nothing that anyone but a mom looking for it would pick up on. He's quirky... but everyone who knows him attributes it to him being very bright... in my pandas head now I attribute it more to the pandas.. but is his brightness due to the pandas too.. I don't know. So I watch him, I see his inflexibility, his mild meltdowns (that were not as mild a year and a half ago) and listen to my friends talk about their non pandas kids who are also at times inflexible and have irrational meltdowns... and I think how the heck should I know what to do... Do I tell myself that the demon I know is better than the demon I don't know.. don't rock the boat... or do I try to figure out if pandas has a greater grip on him than I realize... For now, I am watching...waiting... hoping for some sign that lets me know to let him be, he's going to be ok or to step it up a bit. I am grateful for how minor this is and that it's not really impacted our family to as great a degree as it has to many but it definitely makes it hard to decide what to do for him and what to just accept as him.

That is interesting... I'm so not into the science of it all so maybe I read it wrong... It's connecting high levels of camk with certain kinds of memory loss? Interesting to me is that my pandas son with high camk has an incredible memory and always has.. Thinking I am reading this wrong though?

Wait, if he's getting his tonsils out be careful what you give him first....My daughter just had her tonsils out and I know it said something on the sheet they gave me about a certain amount of time before the surgery not to have something... can't remember what.. and after the surgery Motrin and Advil were on the do not give list... they said just tylenol.... something about bleeding was the reason.

Fixit, I don't think LaurenJohnsonsMom ever came back with a real update so I'm not sure if we should assume that her daugher only has a slight eye twitch. I could have just missed an update though... She might not be have the sneeze tic but I don't know if that means she has seen no negative effects from the IVIG.

I don't know all the answers to your questions but I can answer a few The cunningham kit showed up within days. I don't think most people had success getting their lab to do it.. some said they had a good relationship with them and were able to. I asked my pediatrician to do it and thankfully he was very happy to help me. If you have an open minded ped I would ask them if they would be willing to do it for you. Then right after I packaged it up and went to have it overnighted back. Dr. Cunningham's team really has it all set so that it's really easy to follow what they want you to do.

Good Luck!! I don't know anything about the IVIG so nothing to offer there.... but I didn't see where it said that girl was better in 2 days? I didn't see anymore news updates so we wouldn't know if there have been any of the results some people have seen here.

I just got my non pandas dd tonsils out this past Friday. The ENT said she met the criteria in that since september she had strep 5 times. She had it the previous year a bunch as well. After the surgery he told us that her tonsils were a mess....looked like tonsils that had been through many infections I am hoping it helps her not get strep as often... my ped thinks it could help but even if she still gets strep, I'm glad I got them out being the ENT said they looked so terrible. I am surprised though that they would recommend it for your nephew's amount and timing of it.... maybe there is more to why they suggested it?

We too have successfully used 5HTP.