thereishope

I agree with calling the emergency number for the peds office. Is he small enough that you can hold him down if he rages and gets out of control? Is he threatening to hurt himself? Because he's 6, I admit, I get nervous of the ER and PANDAS rages. My son was 5 and I had times when I thought I'd need to call an ambulance but I was so fearful they would admit him and I knew for my son that would be devastating and torture (especially if I would have to leave him) so I always road out the rages. He weighed only like 43 punds at the time, so I could restrain him. Let's just hope it doesn't come to that decision.If you do take him, have anoterh adult come with you and take your time reading everything you are given before signing.

I'm sorry you're going through this! Do you think you can get her to take some Ibuprofen? Does that help her at all? Is she at least coming out fo the meltdowns? I've witness 2-3 hour meltdowns before. There were times we just had to ride it through, unluess there is threat of self harm or harming others. As for your doctor, you can sternly state that if he even considers sending your child to the hospital to be instutionalized, you can't understand why he won't prescribe a longer script until you can see the specialist. Tell him all you need is a month of Zithromax until your appt. There's times docs do that for bad sinusinfections, why can't he just do that for your child? Ask him, see what his response is.

We've had similar things here. He couldn't eat until everyone else was sitting in their "assigned seats" and for a while I had to be in the room with him and sit on the bed while he picked out clothes and got dressed. It becomes really hard when a sibling in then brought into the mix. Like yours, rewards didn't work. I couldn't give any praise either. I never shared any long term goals with him, just the baby steps like you said. I gave a day in advance warning that it was the last time he would do that tendency. A couple times he even asked me to take a picture of him doing it since it was his last time. Then the next day, what I said was what we started. When I saw he no longer needed reminders not to do it and anxiety was at a low, he would receive another heads up what we would tackle next. I did major baby steps. With lunch...so your son needs to being eating before the brother and then the brother needs to wait longer?

I'm glad to hear things are better. Recovey has to start somewhere and can take quite awhile.Even if it's baby steps, those smaller triumphs is what helps keep the hope and fight alive. You know I have to ask...what was the new drug? Now I feel like you're teasing us:) What treatment? Okay, I think I know which one this is:) I need to look into coconut oil. Someone else recently mentioned it for overly dry skin to apply directly to skin. As for some of the remaining issues that may be learned or residual, have you considered a therapist? If it's OCD, have you tried ERP now that you see some improvements already there? Thank you for all your insights and sharing what you've learned!Please continue to update us now and then!

Is this a list? It looks like one. http://www.archive.org/stream/atlasofbacterial00leif/atlasofbacterial00leif_djvu.txt

New study shows Augmentin should be given at first signs of ear infections. http://www.nejm.org/doi/full/10.1056/NEJMoa0912254

As with IEP's, don't feel bad using a dx even if in your heart you know it's PANDAS and not the Aspergers, OCD, etc. Until society, the med community, and the public decide to treat our children with respect and equality, we need to do what we can.

I'll bet the bank she doesn't! Strep has a flagella too.I can't find an actual list, but you can think of various bacteria and simply type "Does ____ have a flagella". I know that's not the easy way to do it so hopefully someone else can provide you with an actual list. You'd think that would be rather easy to find on the internet, but it's not. Sorry I can't be helpful with this.

I don't have much time to look around on the internet right now, but I did found that syphilis and gum disease can create a positive band 41.

No matter how you say it or explain it, someone who hasn't been directly affected by PANDAS will never understand why we need to protect our kids from strep, how children can be asymptomatic, how tests have failure rates. When my neighbor's son had impetigo, she asked if the sibling could come over. I kept making excuses and finally I just called her and I reminded her that strep is my child's trigger. I've fought hard to help him recover and I cannot take any chances her well child may have contracted impetigo and have simply not showed symptoms yet.I explained how I couldn't discuss in front of her child since I don't want mine to be labelled as different nor do I want the well sibling to be mad at the sick sibling. I said we could not be around them for a couple weeks. I would definitely tell her the child needs to stay home until she gets the culture results and the child is feeling better. At a minimum, 48-72 hours after throwing up and post any fever. Also, if she keeps the child home from school for being ill, she cannot stay with you.Even though it's hard and you don't want to hurt feelings, your own child's well being is themost important thing.

I just wanted to post a welcome to the forum. For some, the faster you realize there is an infection after onset, the more optimistic of a faster and full recovery. Along the way, you may see some bumps in the road. It does become hard to determine what is part of recovery and what is a signal that the infection wasn't cleared or she is sick again. Trust your Mommy gut. Here are some useful links to read if you you haven't done so already. I also suggest keeping a journal or a charting system of her symptoms. It helps a lot. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Buster's Charting System http://www.latitudes.org/forums/index.php?showtopic=6685&hl=

Only whole milk, huh? Could it be that other milk is causing a more subtle reaction and it doesn't bother her to the point of complaining? Milk was one thing my son boycotted with PANDAS. Now that he is well, it is stil the one food/drink he rarely has. He likes milk, but never wants it. I just took it as his body's signal that something isn't right for him with milk and I don't push it.

I drive my husband crazy...One of the things I do is reassurance OCD and the questions will be directed to him. no mono here. I cannot take tetracycline or larger doses of Vitmain A.They cause swelling of the optic nerves and makes me look like I have a brain tumor. I also remember getting yelled at in the 6th grade because my handwriting got really bad.I had 3 teachers approach me in the hall and question what was going on since I used to write so nice. Worried Dad, you're very strong. I'm proud of you.

Thanks for that article! It's a good one.

I forgot to mention about history of strep. My maternal Grandmother almost died from strep as a child and lost hair and some hearing from it. My maternal aunt's child (my cousin)is a known strep carrier.

I wonder. One may say you would know but sometimes the mind has ways of distorting memories to help you cope with the past. Every year, I had multiple dx of tonsilitis as a child. The doc never did strep tests, always gave penicillin when I had white on my tonsils. I had/have some OCD tendencies, had some sensory issues (especially with noise...I have sensitive hearing, couldn't go to movies as a child, and the buzzing sound from department stores lights was like nails on a chalk board yet no one else would say they could even hear them), rages, anxiety, separation anxiety, etc. Maternal side has history of autoimmune disorders. I think the issues I remember having helped me know ways to work my son when he had problems. I, myself, have had rare side effects from meds and certain vitamins results in severe inflammation and I had preeclampsia in first pregnancy so I know I have some type of suspectibility to inflammation. Maternal side has hx of clinical OCD and other mental disorders. It wouldn't suprise me if I did/do.

Cunnigham's test is not exclusive to strep.I don't think I've ever read on here about false positive Mycoplasma tests. Here is one post I found interesting when I read it and bookmarked it for further reference if I should ever need it....

That's okay. I know I never posted on the Lyme board before. I post articles on the PANDAS board when people bad mouth us so we can stand united and defend our kids. I was trying to do the same for Lyme.

Oh, I did not post this to say it doesn't exist. I'm sorry if it was taken that way. I was posting this so others can write to the person in the article and dispute that it DOES exist.

I'm sorry you're going through this.I wish doctors would realize how in the case of PANDAS families it is better to err on the side of caution when it also comes to PANDAS siblings. We had a ped that would prescribe abs for my non-PANDAS kids if we brought them in for a strep test while we waited for cultures. Well, he was promoted and left. Some remaining peds in the practice, even though I remind them all my kids get asymptomatic strep, we've had false rapids before, and I have a PANDAS child that has seen the depths of ######, now won't give abs until the culture results are in. Well, I shouldn't say all the peds are like that, but I've encountered two. So, now I must weed out which ones "get it" in the practice and will give them something while waiting on cultures and request appts specifically with them. Why can't I find one of those doctors that still prescribe abs over the phone?

Tsouderos LA Times Lyme Disease Reporting Questioned by Knight Science Journalism Tracker http://www.ageofautism.com/2011/01/tsouderos-la-times-lyme-disease-reporting-questioned-by-knight-science-journalism-tracker.html

I believe those were the two national campaigns. Parents have taken it upon themselves to try to educate locally through mailings and such, but I think that's it for national.Luckily, specifically in 2010, PANDAS did get some national coverage just from news articles and being represnted at national conferences, but they were not any form of a campaign. The IOCDF has been more helpful with PANDAS. Just last year, they did add the new, update PANDAS Fact sheet to their website and they are asking parents to write to them their stories and experiences for publishing. As for them not giving research money, I don't have an answer to that. One can ask the same of orgs that deal with autoimmune disorder or rare disease (even though we as a community say that it is not rare, just rarely diagnosed). To this day, NORD will not even list PANDAS nor do they return inquiries as to why. AS for other orgs that deal with OCD, TS, ADHD, was there a specfic one you were referring to? Some websites that give info specific to those disorders list some PANDAS info. Luckily, if you do post info on PANDAS on things like their FB pages, at least they don't delete them. I think they worry (if that's the word) that they may insight panic in their community? Not sure. Hopefully, once the NIMH issues out their white paper and they make more of solid stance on it (besides the director post) maybe then more orgs will be more apt to post info. Again, no real answer here. As for an estimation on PANDAS, who really knows. Yes, Swedo is cited as saying that 25% of kids with OCD may be actual PANDAS, but that doesn't include all the other disorders out there (bipolar, autism, TS, etc) and that number is probably much higher. Even adults with neurobiological disorders could be from undiagnosed PANDAS or PITAND, especially if they are treatment resistent. Also, with some PANDAS cases, who knows if it can morph into what some may call "regular OCD". My son had residual OCD with his third exacerbation. Who knows what it would have been like if he never had antibiotic treatment. Can't even think of that. Simply, the prevalance is not known right now. Even if there was a number, I don't know if I would trust it right now as many doctors still don't know how to diagnose or understand the complexity of it. Sorry I couldn't be of more help.

Just throwing this out there....could you possibly have a research based chart and an anecdotal chart? Similar to your Fact Sheet that is all based on research and then the FAQ which includes research and anecdotal information. Okay, now that I typed that I realize that may be confusing for some people. Anyway,I applaud you for taking these things on. Thank you!

Thank you for sharing the info you learned!

I like the chart. As for the question marks, is that based on research only? If so, it makes sense. Otherwise, if a parent knows the signs well enough, they may see the gradual onset of OCD before the full blown explosion of OCD we know as the sudden onset. I see that in the increase in siblings on here that are being dx with PANDAS. The parents are luckily catching it early in the siblings because they see the gradual onset of OCD prior to a full blown explosion. They recognize the symptoms better from experience. As for the "remits with time", are you referring to PANDAS,OCD,what remits with time? Can you be more specific what that square represents? As for prednisone, I know the majority on here who have used a steroid, say the benefits are brief, but there are some on here (inc me) that say it wasn't brief and it the benefits stuck and helped with recovery. If it remained on the chart as you listed, perhaps an asterick with a clause on the bottom would help? There are also some on here that are PANDAS and steroids didn't help, especially when a steroid was used a second time or in a subsequent exacerbation.