thereishope

You need a personal assitant, Dr T!

The reason some have seen setbacks or exacerbations following dental work is that bacteria can get into the bloodstream, in damaged tissue, etc. I was referring to the hole being opened and exposed and bacteria getting in. Now that you said it has been possibly loose or cracked since his exacerbation, perhaps that's how the bacteria was getting in. Maybe you'll see improvement now that it is fixed. But keep in mind it may not be overnight improvement, but a slow improvement.

I just had an awful thought. What if it would be a live vaccine?! Then you have all these PANDAS kids who react to exposure or you have shedding occur? I also bet a strep vaccine would start rather early in life. Perhaps being yet another factor that increases the number of PANDAS cases. It would also probably be a vaccine that you need to get more than once.

Just wanted to wish you the best in luck with stepping down the antibiotics. What do you think your final dosage would be...the dosage he will stay on proph? All I can suggest is doing it slow. Maybe every 2 weeks? I'm just throwing that number out there. Obviously don't change dosing if you know something stresfull will be happening (like a big test at school) or you will be travelling. That way if you do see a setback, you don't have too many outside factors that can the culprit instead of the new dose.

I think you will have to make a special request for them to drain it and culture it. I do not know for sure, but I'm guessing they'll have to make a slit in the ear drum then drain it. When a child has leakage from their ear from an ear infection, it's because the ear drum perforated. You can request ear drops too to make sure no other infection creep in if they do make a slit to have it drained.

If you have them drain her ear to get fluid, I'd be more comfortable with the ENT doing it. You just might find strep in there. So, is she doing better now since she is on more abx?

If you see an increase in symptoms, it could be in part to the filling coming out and the dental work. People have cited increase in symptoms after going to the dentist. Do you give him Ibuprofen? If not, maybe do that for a few days.

A vaccine makes the body produce antibodies. So...if it's a strep vaccine, I would think the body would produce strep antibodies in reaction to the vaccine. That would not be good. PANDAS is caused by the antibodies, not strep itself. The autoimmune reaction would occur.

I don't know about what Michael explained, but as for a geographic tongue, my husband has that. It's not a whitish coat but instead it not smooth. Not caverns or pimple like things, but not smooth. You can keep that in check by staying away for acidic foods like orange juice. I think there's also a rinse you can do to help.

Hi. I don't have a recommendation for you, but a suggestion. Contact your school district and ask if you can somehow get into contact with someone in the Early Childhood team. They are OT's, therapists, slp's in the district that deal with ages 3-6 who have IEP's. Perhaps they can give you a recommendation. I also do suggest reading up on OCD your own. There are things you can do to help your child while you are waiting to find a professional.

Does anyone know what Dr K's definition of a "cure" is and how long a child needs to be in remission before he considers them "cured". I still think it goes into remission. I think that you can "cure" a child of each exacerbation, but the overall disorder is in remission. Also, and I'm just thinking out loud, for those PANDAS cases Dr K sees, are most of them kids whose parents have tried antibiotics without success so they are the ones who need IVIG? Whereas, if a child repsonds to antibiotics given by a local dr, they have no need to see Dr K. Meaning, are his statistics an actual sample of the PANDAS population? yes, I know he's seen hundreds, but are those the hundreds who are not doing well? My son has done well on antibiotics alone and because of that I have not felt a need to see a specialist like Dr K.

I'm bumping this to try to get more votes. also, those who have children with Myco P, there are some votes casted already and they may not know since threads don't get bumped for a vote only.

It's very hard to know what OCD is controlled by PANDAS and what OCD is residual from PANDAS. In my son's first and second strep triggered exacerbations, he had no residual OCD. But with #3 he did. Unfortunately, it's partly a guessing game.

Sometimes when a child is sick, parents have noted "the calm before the storm" so do be on guard and not totally surprised if you should see some PANDAS type symptoms ramping up in a couple days. When my child was in the early stages of recovery we would have setbacks with viruses, allergies, stress. As for sterp test, I decided that on how bad his behvaior got. I saw patterns in him and I was kinda able to gauge if it was an increase from a non-strep or if he needed to go in.

Off topic, have any of you decided if you're getting together, doing ribbons, wearing photos to distinguish you as the "PANDAS parents"? Wish I could be there with you guys! These darn bills keep me from going:)

Shortly after I found out my son had PANDAS, my aunt informed me that my Grandma had almost died from a strep related illness when she was a child (prior to antibiotics being available). I see that as significant medical history. So, you then have this info but you have no idea what to do with it or how it can help you now. Mixed emoions all over again. I have also since found out that strep carriers run on that side of the family too. That is also the side that has numerous autoimmune disorders and some OCD.

I find it interesting that if a doctor is from Chicago, they assume they have an edge on people. I have had bad experiences at the Children's Hospital and at Northwestern Memorial. Granted, it was years ago, but you learn just because a doctor practices at a big hospital, it doesn't really mean much. Now Dr K is from the Chicago area. So that explains why he is okay:)

I'm always in the school of thought that every child is different. When she received the flu mist, your daughter also a had a double whammy on her immune system by being exposed to strep in the household then strep outbreaks at school. Her immune system hasn't had a chance to calm down. When did she get the flu mist? Also, you can try ERP type therapies in the home. Perhaps she has had that OCD ritual for so long that it is residual. Maybe she can overcome it.

To clarify, my son did not receive an Asp diagnosis. I took him to the psychiatrist for residual OCD and because of all the disorders and problems that had surfaced, she said she had to screen him for it. He never received an Asperger's dx. Also, PANDAS first surfaced on my son's 5th birthday. Prior to that day autism or Asperger's was never a concern. Besides having a speech disorder ,he reached all milestones, was fine socially, and no other disorders were present.

You know what would be interesting, to do an informal poll on here how many of us were either told our kids might have autism or Asperger's (by dr, school, etc), how many of us had to get our kids screened for it, and how many who already have an official dx of PANDAS have a child who also carries the autism label. The conference would find that very interesting. Just state it was an informal poll and one lump question, maybe for kids 7 and under? Realistically a person whose PANDAS surfaced at 13 wouldn't be screened for autism if there were no concerns before. And make sure there's a box that says " No one ever mentioned autism". My son had to be screened for Aspergers's because of everything that surfaced. No one would the think of screening him now since he is recovered.

I think we have a good representation at this conference. Laura is very well versed in PANDAS and she will represent us as informed parents. Lynn may be recognized and that makes people feel that they can trust her and feel safe. Lynn has always popped back on here to get feedback and I think it is amazing she is turning to us prior to her appearance for words of wisdom and guidance. They can only have so many parents speaking. What I worry about is that no matter what these two say, they realistically can't please everyone. It's very hard within a cerain timeframe to paint everyone's picture. I hope we all remember that. Let's not jump on them afterwards otherwise parents may become hesitant to speak.

Link to Buster's rating system... http://www.latitudes.org/forums/index.php?...ic=6685&hl= Also, allergies are a trigger for my son too. When he was recovering from his third strep triggered exacerbation, he had an awful setback. It took me a bit to figure out why he had a negative strep test. His PANDAS symptoms surfaced about a week before the physical allergy symptoms surfaced. All he had was bad, bloodshot eyes, but once I got his allergies under control, I definitely noticed his PANDAS getting better. As for allergy meds, it varies from child to child. On day 11 of Claritin, my son got super hyper. For him, dye free Benadryl worked. The only allergy meds I've heard to stay away from is Singulair. Also, be aware that allergies can eventually cause sinus infections too. As for the charting system, I do suggest if you see a big increase in the number rating and a worsening of symtpoms, jot down what was going on at a the time. You may begin to notice patterns. I did a journel. Journals are more time consuming, but I found it helpful to see patterns and keep track of his recovery and setbacks.

First, speak from your heart along with giving facts. What did you want? Ideas of what to include? Pics? Concise personal stories to choose from?I don't want to start giving suggestions where it is not needed. If you give pics or personal stories, do make sure there is a sampling of different symptoms, onset, ways to recovery, and those who are still searching. It would be great if someone who had low titers and a PANDAS dx and recovery could supply a pic or story.

No, it shouldn't. You're doing a great job. The both of you are great parents!

Would it be live? I don't think PBS does live. I would think he's recording it tomorrow and I am assumming a turn around would be at least a couple months. Don't know anything about it. I was informed by another organization that PBS is doing some a short term series on rare diseases. I don't think PANDAS is part of it. But, who knows maybe it's sparked interest in other things.