tpotter

Yes, we are considering it. But, not sure if we can for at least one of my DS's, as he has seizures, and it is not recommended when there are seizures.

You can also print this article for the doctor: It correlates hair pulling with strep: http://www.health.harvard.edu/newsweek/Obsessions_and_Compulsions_in_Children.htm http://www.ocdhope.com/trich-hair.php Keep in mind though, that many families are finding that strep is not the ONLY issue with sudden onset neuropsych issues. Your doc can also refer to the NIMH website: http://intramural.nimh.nih.gov/pdn/web.htm These are all highly respectable sources. If you still don't get an answer you are ok with (or the doctor blows you off, which many doctors have done to many of the members on our forum...including my family), there are PANS specialists that we can refer (there is a link at the top of this page.) But, again, keep in mind that this is an autoimmune disorder caused, apparently by an immune deficiency (can be tested for), so the child is exposed to a lot of things (may be viruses, flu, staph, mycoplasma pneumonia, lyme and co-infections, and may all need to be identified and treated. But, the articles above and provided by others are a good place to start.

We used it. DS17 had to stop and start twice before he could tolerate it. I used it straight for 3 months. I really think it helped both of us, but it is quite strong, and side effects could be some bone loss (significant for me, because I already have osteoporosis.) Make sure you supplement with magnesium, calcium and vit. d3. OK...just started back on it.

Done...thank you for doing this.

This should be on change.org. It will get a lot of signatures there.

DS17 also has seizures, but 2 neurologists believe, now that they are due to PANS. I agree. He is on 2 anti-seizure meds.

I will second LLM's responses 100%. When you see her, make a followup appointment immediately. And, if you feel that you need to talk to her in between appointments, I would go ahead, and get an appointment (you can ask the office staff if there are any cancellations to get in sooner at that point.)

Wow. I give him tremendous credit for wanting to explain it to his friends. My DS's refused to do that (younger one is adament about not telling them. I have explained it to adults by giving links to about 4 articles/websites (I have learned to keep in low,) but not having the experience to explain it to a 14 yo, I don't know. What I would say is maybe that his body, particularly his brain attacks itself when he is exposed to any kind of infection. So, it makes it hard for him to think, focus (and anything else he cares to share.) I would recommend that he keep the explanation to a minimum, because most people don't really understand, and they'll tune him out. I would also stay away from the "psychiatric" part of "neuropsychiatric" when explaining it to them, because again, most people just don't understand, and they won't get the fact that this is a medical basis.

Hi Kathy -- I don't know your DS, but it sort of sounds like to me that he's either reluctant or possibly even refusing to "buy in" to the ERP, especially if Rothman couldn't get through to him. And maybe you and/or your family are inadvertently making it "comfortable" for him to do that? I mean, if you make sure to cook him or to have on hand the 5 things he'll currently deign to eat, for instance, then you might be supporting his avoidance of the other 105 things he could be eating instead, no? And if you give him a lift to somewhere he wants/needs to go when he's unwilling to drive himself, ditto? Or maybe you are not in any way accommodating your son, and he still makes the avoidance choices, at the expense of things in his life that, in his shoes, you or I would find unbearable, but he deals with because he finds that preferable to facing those anxieties/situations? I know my DS went through a period in which he refused to see the OCD as any kind of problem, as something he was willing to actively work against; rather, he made justifications and rationalizations for it, and would argue on its behalf, rather than face the fact that it was hampering him in his life. We attended a session at the IOCDF conference a couple of years ago that featured a panel led by Dr. Storch from Rothman and included several members of his team. The message was pretty clear that, with older kids, if they're not participating in the ERP (which would lead to a lessening if not a cessation of the avoidance caused by OCD), then there has to be consequences for that. They cited a case study with a teenage boy in which he lost privileges (screen time, keys to the family vehicle) until he got with the program. Another example of the ERP/family participation/tough love component. For our DS, the main issue was the time that the avoidance was sucking up into its yaw! There were some things he'd prefer to avoid but were non-negotiables (showering, brushing teeth), so he'd get them done eventually, but he would take 5 times what a "normal person" would take to get them accomplished. Try as we might, we could not seem to get him to recognize how much of his own valuable time (hanging out time, video game time, sleeping time) he was handing over to the avoidance; we kept pointing it out to him, and the being forced to partake in the task (non-negotiable) was its own exposure exercise, but night after night, day after day, he continued to throw hours down the proverbial drain. So, we had to come up with a consequence that meant something to him, that he could feel the impact of. And we had to be relentless and consistent with it, too. We sat down with him and agreed upon a "reasonable" time for each of the avoided tasks; it was usually at least double the time DH and I thought of as "normal," but it still represented a sizable time-savings over his current record, and we all agreed that, as he got better at moving through the tasks with greater efficiency, we would continue to shrink his allowed window. The consequence if he blew his allowed window? His weekend bedtime/curfew got moved up 10 minutes for every 10 minutes he "blew". So, instead of being allowed to hang out with a friend until, say, 11 p.m. on a Friday night, there was one Friday on which he actually had an enforced turn-in at 9 p.m. That finally spoke volumes to him, and he began to power through some of the avoidance. In the end, most times with our DS, it comes down to us drawing a line in the sand as in "Your OCD may be able to push you around sometimes, but it is not going to push us. And if you're not ready to take the initiative yourself to push back and claim your life and your time for yourself, then we're here to help you learn to do that." The plan, like with most things with our kids, is for him to learn to manage it all on his own over time, and he's already come a good ways toward that self-sufficiency. It's a work in progress. So, I guess all that is a long way of saying, presuming your DS still lives with you and/or you continue to have a say in how he uses his time, conducts his days, etc., then you still have the opportunity to induce/persuade/require him to move forward with his life and exercise some control over the OCD. Of course, it's always best and preferable if the person with the OCD makes that decision himself and we're just there to support. But I've found sometimes it takes the consistent push-back by the "support crew" to let the OCD sufferer know that this is the name of the game . . . that giving up control and opportunity to the anxiety is too much of a waste for us to stand by and allow to happen. Hope that helps, if only a little. Hang in there, and hang tough! Or, he may be herxing. It is pretty well known that ERP will not work if there is too much underlying infection. You have to deal first with the infection. My DS has been getting treated for all kinds of infection for years (4+), and has been sick for over 8 years...took us 4 years to even get diagnosed). He is just now able to start doing the ERP. And, yes, avoidance is definitely an OCD. Herxing is where the symptoms get worse before they get better, and is a symptom of lyme and co-infections. Please rule these out, if you haven't already.

They might not be mentioning specifics to make sure no one steals their research (I would think this is ongoing research.) Just a thought.

Thanks for posting this. I just forwarded it to DH, who is CDC positive for Lyme, but had to stop tx early, because of mitral valve surgery in 2011. He doesn't believe he really has lyme, although he is diagnosed with RA, has all the symptoms, and as I said, was CDC positive. His doctors actually want us to prove that it's lyme, so this could be very good for him to get. He's not on abx, because he can't do that kind of tx. tpotter- the Dr. M that we see can order this for him. He is familiar with the test- I had him order it for dd last year (which she was positive). I think he may have some sample boxes in his office. Thanks. That's the plan if his PCP won't do it. But, I have suspicion that his PCP will order it. That's one less doc for him to have to followup with. Dr. M. also ordered the test for my older son last year, when I gave him the info. DS tested negative (that's a good thing...I actually think it's accurate in this case.) I just reminded DS to call his PCP on monday to ask him to call. The other reason to get the PCP to do it, is that none of them believe that he really has lyme, even though he was cdc positive on the Quest WB, he is dx with RA, & which doesn't respond to meds. If this test comes back positive, the may just believe! Unfortunately, it's still going to be a little difficult to figure out the proper tx, because he's on coumadin, and that changes everything (can't pulse abx, for instance, because it affects his coumadin levels!)

PM me the ER. I'll let you know if I know to stay away. One place for sure to stay away from is CHOP. They deny PANS exists, and will dx all with conversion disorder. I'm going to PM you the name of a good doc in the area (hopefully close enough for your.) I would suggest that you go in and ask to have tests done for: Strep Staph Mycoplasma Pneumonia (walking pneumonia...very common, and causes mood swings/rages, but rarely tested) I would suspect there may be other things, too, like viruses (did she recently get any viruses, immunizations that may have been given while she was sick?) Did you see any evidence of lyme (like the bullseye rash that only shows up in about 30% of people.) Does your DS have stretch marks anywhere on her body (that tend to look like cat scratches, and/or are very dark reddish/purple). These may be bartonella, which is a tic-borne disease, like lyme, but causes severe mood swings and rages.

These sound so much like the symptoms my DS had. I would definitely consider seeing an LLMD, and testing for bartonella. The fact that you mention moody is a big hint. Also, DS lost the ability to speak several times, and couldn't stop ticking. The other thing to check for is parasites. 90% + of us have them. They don't affect everyone, but they do affect many. Does your DD have an stretch marks? That is a symptom of Bartonella, and is actually a rash (they are bright red or purple, because they are filled with blood.) You can see a picture of them on the internet (google "picture Bartonella rash"). They look like cat scratches, and that's why it's sometimes called "cat scratch disease". Worsening of symptoms could actually be a herx...getting worse before getting better, but at the same time, you don't want it to be a severe herx. We've gone slowly for that reason. We are seeing an ART provider now, and I have to say that we are finally seeing some major improvements in just the past few months. She was able to help us figure out what was going on, too, as well as treating. If you want more info, you can PM me. Good luck figuring this out. I know how frustrating this is, and am praying for you all.

as far as I know if its in a multi dose vial it has thimeresol. that's the quick way to tell. you can get thimeresol free for adults, its the "pregnancy" adult version But, they give the ones with thimerosal, apparently to the kids, too. I'll bet you anything that's what made my ds explode like he did 5 years ago when he ended up in a psych hospital, and had his first really major flareup...right after the flu vaccine!

Does she work for a hospital? This is happening a lot this year. Here's an article on a nurse who was fired from an Indiana hospital after almost 22 years there. Its a travesty, and seems unconstitutional. http://news.yahoo.com/nurses-fired-refusing-flu-shot-224637902--abc-news-health.html She either works in a nursing home or a hospital. Yes, I think it should be unconstitutional, but somehow...even with unions here, which are big, they are getting away with it.

YAY! Ds12 had if first fever in about 5-7 maybe 9 years, just after thanksgiving 102.8-9!!!!!! i monitored it very carefully...that was my limit. i was not going to let it go to 103..i felt comfortable staying just under that number. i was giving cold compress on neck, forhead, and feet. once it got to the above number, i had him get in a cool bath....i didn't want to shock him. his fever was 2 days and the second day stayed at 100-101. No tylenol, or ibuprofen. We did get a little bump up in his condition(in a good way)from the fever. Maybe in a few days you will see a little bump up too!!!!!! That's great about the bump-up. I'll tell him. I did have him take ibuprofin, only because he was in severe pain, and I was also concerned about the fact that he was having trouble breathing (wanted to decrease inflammation.)

This guy suddenly had severe onset stuttering (still awful), but fantastic when singing. He said it started when he was 6 years old. I'll bet it's PANS!

OMG...I had no idea that there was mercury in the flu vaccine!!! My children and I don't get it anyway, after they had massive reactions to the vaccine, but this really makes me angry that they are still giving these vaccines out with thimerosal, and not making sure that EVERYONE IS INFORMED! And yet, they FORCE some people to get the vaccine (a mom of one of the kids I work with told me today that she was told that if she didn't get the vaccine, she would be fired!)

It might be easier, and just as inexpensive to get your azith at Costco. We get it for our dog, and it costs us around $10 per month! In fact, we get all his meds there, because they are not covered by insurance, and there's another that costs over $100 everywhere else, that only costs $11.00 at Costco.) Yes, I do think it might put your LLMD at risk of being hastled, but in the end, it's up to your LLMD. Good luck.

I saw that thread. I don't know. We've been doing ART, and I've been seeing steady improvement since we started it. He really wasn't having significant PANS symptoms since we started the ART (some, but not significant). The last big PANS symptom (a massive rage like I've never seen, and I've seen some horrible ones with him) was last September when he was exposed to mold that was released into our house (big problem). But, as I said we've added in ART, and I think the treatment has made the difference in how he seems to be fighting this illness. That said, he's been pretty darn sick this week. I'll let you know when he's over the illness(es) what happens with his PANS symptoms, but I still don't know if I'd be able to correlate it, because there's other things going on.

I am celebrating! It was only 99 degrees F, but given the fact he usually comes in at about 96 degrees, and hasn't had a fever in years, this is very significant. Was having hot and cold flashes with it, as his body was fighting. He appears to have the flu, and maybe strep, and pneumonia and who knows what else. Saw the dr. today. Been out of school for 4 days now, and will take off through tomorrow at least. We've been treating for lyme, bartonella, babesia, erlichiosis, and a host of other things for 5 years (the lyme and co- for about 2 1/2 years.)

nevermind, it is working now. I can't figure out how to delete this. Click on "edit", and then just take everything out (you might have to put a statement in saying that you "deleted it.")

Thanks for posting this. I just forwarded it to DH, who is CDC positive for Lyme, but had to stop tx early, because of mitral valve surgery in 2011. He doesn't believe he really has lyme, although he is diagnosed with RA, has all the symptoms, and as I said, was CDC positive. His doctors actually want us to prove that it's lyme, so this could be very good for him to get. He's not on abx, because he can't do that kind of tx.

Yeah! That's fantastic. I bet his docs are scratching their heads?

My opinion of PANS treatment is biomedical treatment. When I say PANS, I don't mean specifically strep, so anything biomedical goes. For instance, my family uses abx, chiropractics. homeopathic, supplements, and have used PEX and IVIG. As far as I'm concerned, anything goes (if that helps.) And, I agree that this should definitely be presented at the AAP.