KaraM

i would think their body would respond by sending out antibodies and do the same thing in reaction to an attack..JMHO A concept I'm still struggling with - are titers and antibodies the same thing? related? does a titer indicate the presence of a certain antibody? So, assuming my daughter is a child who does get elevated titers with an infection, would her titers rise if she was fighting exposure to an infection her brother has? Her titers have been trending down for the four times she's had blood drawn and have been in the normal range the last two times. I'm so confused...

Ok - so we got the results back for my nonPANDAS son whom Dr. B. thinks may be exposing my PANDAS daughter. All my daughter's results were in the normal range and for the 4th time in a row, have trended downward. My son's results, however, are not so straight forward. ASO (normal reference 0 -640) up and down - always in the high normal range - does this mean possible carriage June 585 July 607 Oct 539 Dec 555 Anti DNAse (ref 0 - 375) - started positive, trended down until this last draw, it started up again (but still in normal range) June 420 + July 381 + Oct 346 Dec 365 Myco P - Ab IgM 1.11 (normal <= .90) so it's elevated - but is this elevated enough to mean an active infection now or is this just indicating infection in the past? He's had pneumonia 3 or 4 times between the ages of 3 and 10. Ab IgG 0.24 (normal <= .90) so in the normal range I got these results over the phone from the pediatrician's office, based on an order from Dr. B. The nurse at the pediatrician's office doesn't really know what to make of it and I haven't been able to connect with dr. B yet. So I'm just looking for any insight anyone may have... Does exposure to Myco P cause exacerbations the way that exposure to strep can for a PANDAS child?

We stayed at the Doubletree (didn't know about the deal - but will use it next time). It's in Norwalk - about 5 minutes away.

The other night in the car when she was crying, she said "I hate it when I cry, it makes me want to say bad words." Then she said "boobie" and "butt crack" (Lovely, I know... I guess it could be worse) Is she actually saying the words?

Here's his website - contact info is right on this page. http://www.advanced-allergy.com/

I can totally relate to this. My daughter wanted us to wash our hands before touching her - would ask if we washed them before getting stuff for her...If we dropped anything, it became contaminated. When she was really bad, even washing it wouldn't help - had to throw whatever it was away....She didn't want to stay in a hotel because other people slept in the beds (so that blew our little mini February vacation last year). It's definitely germ fear. ERP helped a little, but it didn't really go away until after we started abx.

Yes, I recognized it as an OCD symptom from all the OCD reading I've done. But I was wondering how best to handle it with ERP - so your suggestion was very welcome. So far it hasn't happened again. But if it does, I'll know what do do. Coincidentally, I was reviewing Dr. K's website today and came across a word I didn't know the meaning of - "Coprolalia" - listed as a symtpom of PANDAS. So I looked it up and what do you know - it's this blurting out of inappropriate words.

Thanks, Everyone, for your replies. Wednesday night was the worst. Yesterday was better. We have both kids' anuual physicals scheduled for Wednesday. The pediatrician said he won't prescribe anything for my non_PANDAS possibly strep carrying son until then. He also wants to see Dr. Bouboulis' notes from my PANDAS dd8's three visits. I emailed Dr. B asking for that yesterday - but I know they are closed on Fridays. I also know how busy that office is and how difficult it can be to get attention for requests like this...I hate to say it, but I am praying that my son's blood tests show titers even slightly higher than they have been, since that would show put him in the positive category...(and would show direction...). Meg's mom, your approach sound great. I think it is helpful to have a system in place like that. LLM - you're always there for me. Thanks. You're right, we know what to look for and can hopfully stop it before it goes too far. Airial95 and Tampicc - thanks for your stories and giving me hope instead of despair. Kara

Mine doesn't, but yes, I remember from the book that Sammy did as well. It was the first thing I thought of when I saw the title of your post.

Hi, We think my son may be carrying strep and that this may be causing my PANDAS daughter to decline. Do exposure symptoms typically only occur when the carrier is around? It seems things were worse over the weekend when they were together a lot. Then, Monday at school and home when he wasn't around, she did well. Last night when my son and I picked her up from my sister's house, she fell apart - contamination fears and a new thing for us - either saying or fear of saying bad words. She was an emotional wreck, crying that OCD was back, that she was never going to be able to get rid of it and that she didn't want it to be like second grade again. Can it really be that quick and intense of a response or am I making this all up in my head? She's been doing well for several months. In some ways I feel like I'm being punished for bragging that she's been operating at 95%? (I wasn't trying to brag - just give others hope...) I need some now. Thanks, Kara

My 11 year old son is the NON PANDAS child that Dr. B thinks may be a carrier. I brought him for the blood tests yesterday and will bring my daughter for them today. Should I do the throat culture as well? My 8 year old daughter has PANDAS. She's been doing great for well over six months but is declining quickly right now.

Don't give up hope. The road is not smoothe. For us, it was like two steps forward, one step back. But over time, we could see that the trend was definitely forward. And that was better than what was happening with just therapy - one step forward, three steps back... I agree - 10 days is not enough. It may give you a clue that it's helping, but it is probably not going to be enough to sustain any significant improvement.

My nonPANDAS son (11) has been complaining of a minor sore throat for 1 - 2 weeks and has been clearing his throat very frequently for that time as well. I'm not sure if the sore throat is making him clear his throat or if the throat clearinig is irritating/causing the sore throat. It helps a little when I give him ibuprofin. Coincidentally, my PANDAS dd8 symptoms are ramping up a bit (she's been doing very well for several months - with only a little questionning/reassurance seeking symptoms remaining). However, over the weekend, the contamination fears started appearing again. She couldn't wear her jacket after it fell on the floor. On Monday, all her shirts were contaminated. She ended up wearing her PJ shirt to school. We haven't seen this type of behavior since May or June. All of this is minor compared to where we were last winter - but I don't want to go down that path again. (This week is exactly one year after we determined she had OCD ) I'm bringing them both for ASO/Anti DNase B and Myco P blood draws today and tomorrow. Dr. B is concerned my son may be a strep or myco p carrier (his ASO levels are on the very high end of normal and have been for several months). Anyway, when/how exactly do I figure out if my son's throat clearing is a tic or just something due to either a viral or bacterial infection? I apprectiate any thoughts. Thanks, Kara

Literally 6 hours after giving my dd7 her first dose of Zithromax, she fell asleep in my lap in the middle of the afternoon. I had to go online later to see if drowsiness was a side effect. But I couldn't find anything saying that. I didn't know if the meds were working that fast or whether she just had some sense of relief that we were finally doing something to treat her. Here's to more restful nights for your daughter and you! Kara

This confuses me a bit. Did he mean that for some, long-term abx will cause the patient to relapse and that for others, long term abx will help cure them faster? So each child's response may be different and fall into one of these two camps? My child is on long term abx, so I want to know whether I should be worrying that, in the long run, they could make things worse. Or if I can relax because she is in the group that is being cured faster (fingers crossed). Thanks for passing all this info from your appointment on to us. I love hearing the different doctors' perspectives. Kara

Thank you, Vicki. Kara

Glad the appointment and doctor's responses went so well. Would you be comfortable sharing the name's of the doctors so we can add them to the running list? I am also trying to maintain the list for PRN. Thanks, Kara

If you want it really short - but not necessarily simple (a little technical with the medical language), try this page from PRN http://www.pandasresourcenetwork.org/about-pandas.html Another thought is the Saving Sammy "Got Strep" postcard or flyer. Email me if you have not seen that and I can email you the flyer. You can get the postcards from Beth Maloney's organization. Finally, I'll try to dig this up in the posts, but a couple of members here have written magazine or newspaper articles, including Buster and LLM. These would be a little longer than the above, but they will at least tell a story that is probably similar to your child's in some way, shape or form. I guess I'm thinking you could say to her privately that she may notice some changes in your child's behavior and that she has been diagnosed with a relatively newly recognzied disorder called PANDAS. Perhaps you could give her one of these pieces and just say something about how your time together with her over the holidays is short and you (don't want to/don't have the time to) spend a lot of time talking about it, but that this might explain it a little. Than just ask for her understanding that the behaviors are really our of your child's control at this point and that this has all been extremely hard on your family. My guess is the hard part will be keeping the conversation limited. If your aunt cares, she will probably want to know more. Since there have been a few high publicity cases, your aunt may have even heard of it by this point.... Kara

I agree with the recommendation to see a specialist. We see Dr. B in Stamford/Darien, CT - right outside of NY. (Is that the CT immunologist you are referring to?) If it's reasonable for you to get to him, then I think you should (we travel 4 hours from MA). Our daughter is on prophylactic antibiotics - he wants her on them for a year. We caught relatively quickly, too. She may have had an earlier exacerbation at some point, but nothing like the one last year that brought us to the realization (about a year ago) she had OCD. She is doing very well now - averaging about 95% back to normal. Dr. B said he thought this response was because we caught it relatively quickly (she started the abx treatment about 6 months after symptom onset). I guess my thought is that it may be appropriate for you child to continue treatment prophylactically instead of a short term course of abx. If you see an expert, you should be able to get the best advice for your child on how to keep PANDAS at bay. Kara I'm in NY, so if anyone has any recommendations on docs, I'd love to here. Also, how do you know the type of specialist that's best to see? We've seen the psychiatrist (not very helpful) and the next on our list is the CT immunologist.

Very glad for you, Emmalily and so appreciative for the insight you give to us as parents as to how our children, may be feeling... Kara

I think the suggestion of reading it together is a good one. The only page I remember that I would worry about is the one where Sammy says something like "sometimes, I think death would be a better choice." Yikes. My PANDAS dd8 doesn't really know about it. My non-PANDAS ds11 did ask to read it a while ago. I didn't have a copy at the time. Now I do - and I am going to let him if he still wants to. I think a lot depends on the maturity of your child as well.

I don't have any experience with steroids to write about - but I think I've read that steroids can make things worse if Lyme Disease is involved. Can anyone confirm that theory (don't have the time to go searching at the moment). I know Lyme has not bee diagnosed in your child's case. Has it been ruled out completely?

When you are hyper attune to every PANDAS symptom and mentally diagnose every child you see that exhibits any one of them. (I have half the school diagnosed already...)

Anyone have the mailing address handy?

My understading is that Omnicef is one of the abx that works "extracellular" (on the outside of the cell) compared with something like Zithromax which works "intracellular." I'm not sure how Augmentin works. We started with Omnicef and saw a little progress, but switched to Zith and got a lot. So which abx to use may depend on where the infection is (intra or extra cellular). Unfortunately, I don't think there is a way to figure that out other than trial and error. This is just my understanding - someone else please chime in if you understand it differently or can explain it better.