thereishope

3 people posted on the facebook page that they are going so there will be other PANDAS people there.

Do you mean they get a documented strep infection while still a child and they don't have a reaction? Otherwise, there are kids that get better, stop reacting to viruses, exposure, but I believe if the child themself have a strep infection they would get sick again (or at least parents assume the child would...who would really want to find out?).

Is it one on the latitudes website that you can link to at the top or the flowchart Buster made?

Some of us are still here, actually I recognize a good number of names. It may be hard to remember who is at what stage in the illness or fully recovered, but there are some on here. As for those that no longer post, I agree with Nancy's reasons or you actually don't feel you have anything to really add to the current threads. Some go on to help the cause in other ways annd that takes up time. Some don't care for the occassional drama that occurs. I do hope as people recover and improve they do continue to at least occassionally pop on here. One to keep up with anything new as it's hard to play catch up in the unfortunate event your child gets sick and and to make sure the pool of information stays accurate and the anecdotal info we have learned along the way continues to get passed on.

Thank you, everyone! Maybe after the conference, you can share an outline, powerpoint or overview of what was discussed? Good luck!

So glad you found out she has strep! Even though it's scary and overwhelming to know strep is back, you know what the cause was and you know what to fight.

My son used to want us to break into the ped's office at night and steal back his strep swabs. He wanted his spit back.

Keep us updated. The medicine refusal will hopefully improve over time. I know it's frustrating. It's this whole thought process that they need the meds to get better,but they won't take them until they get better. Is it only for you that she won't take them. When my son refused to take them for me, he took them no problem for my husband a couple times. Otherwise, I had to straddle him and squirt a little at a time in the cheek area. Target store squirters that you get with the prescriptions there are great for that. You can control how much you squirt in their mouth. This way, if they spit it out, at least they are not spitting out the whole dose.

See I'm the opposite. I want the tooth out asap so the gum can heal. Is that wrong? I mean once the tooth is loose, can't bacteria already find a way to get in? I'm talking hanging on by a thread loose not a little wiggly.

When does she need to have the packet done by? Don't freak out yet. I wouldn't attempt the packet again today if it can wait. If you need to have ideally completed today, wait hours before even attempting it. When you do, don't make a big deal out of it, just go about it as you always do and secretly observe what happens.Keep us updated.

Unfortunately, I had to take it down. I did nothing wrong by posting it at the time as it was a public link, but unbeknownst to me, it was not intended for the internet to begin with. I asked Sheila to delete the thread. I'm sorry about that.

I can relate to the numbers, also if he was doing something and we interupt, he would throw away/demolish what he was working on and restart, I have taken pictures of things as well so he can remember.

Yes.

My son is definitely PANDAS.

At 7 there is a chance he doesn't fully understand what OCD is, what the feelings would be like if it crept back, etc. For some kids, once they get better they forget. I, too have a 7 year old and even though I have tried to explain what OCD is and would feel like. Mind you, my son's OCD was bad, yet I have to now sit and attempt to expalin what it would be like. I don't think he fully grasps it. I can tell by some of the things my 7 year old has said.

No body has responded yet? I will try to post links later, leaving the house right now. I am assuming because she is in the field, you want more studies as oppose to "just articles" or are artciles okay too?

No

Wow! Long, but informative list! Thank you!

Looks like I have my morning reading! THANK YOU!

After everything we've been through we notice every little "oddity" that happens. To be honest, yes, even little things can be a foreshadowing of all you know what breaking through, but it can also be part of being a kid. I think that's one of the hard parts of trying to find a normal life agian and not worry is remembering that all kids, even non-PANDAS kids, will worry, will be scared, will do things that would send up red flag for a PANDAS parent. The fact that he overcame it so fast is a great sign. Now, if continued to worry, be anxious, freak out, demand to get out of the tub....that would be a different story.

I'm sorry you're going through this. All I can think of asking is what probiotics is she on? Those are strong antibiotics taken together and I can see it taking a toll on her gut. I also agree with EAMom in making sure no one else is sick in the house. I hope things get better soon.

Every time someone is my house has strep, all family members get tested. We began this with the first strep infection my PANDAS son had. That was our first known strep infection in the house.This is how we found out my non-PANDAS kids are asymptomatic. The most we have done, though, are rapids and cultures. I didn't discuss this with any doctor before doing it. I just make appts with the ped to get them tested and appts with my husband and mine general doctor.

I just flashed to when another child on here had IVIG over a year ago. Here is the thread when they were debating aseptic meningitis post IVIG http://www.latitudes.org/forums/index.php?showtopic=5299&st=0

As for the PANDAS vs PITAND, I don't think anyone is "against" PITAND at all. I think those outside our forums recognize the acronymn PANDAS more. It's a way to introduce them topic to them then explain how it can be more. The whole discussion of this disorder actually not being exclusive to strep is discussed on here a lot. We often ask if the child has been sick, could have a different infection or have allergies. I don't know why the acronymn PITAND isn't used more frequently. Even if the new name becomes offical soon (Swedo used the acronymn PANS on the radio show, I bet people on here will still use the word PANDAS for a bit. But, depending on what PANS actually stands for (we can assume/guess what we want), it may very well encompass various triggers and infections and put both the PANDAS and PITAND acronymns to rest.

No Lyme, textbook PANDAS. But when I popped on here and saw your post, thought I should share something that may help. Glad it's improving!