P_Mom

4 years for us. Both sons will be on "until I no longer have control of what they do." (per Dr. Latimer.....suggested until around 20) She doesn't want us to lose the gains we have made. I'm going with it. As one immunologist told me..."proph. doses of antibiotics are nothing compared to what an assault on the brain can do. A brain is a very important thing!." I agree totally! No, noone likes it...but, I hate PANDAS WAY more! I have taken them off for short periods of time here and there. Like when we were totally snowed in up here for a week last year. No exposure...so, I took them off that week and pumped the probiotics. But, I only do that when I am sure there is no exposure. I have also gone from Aug. to Pen VK in the summer sometimes. Just to do a more narrow spectrum thing. It works for us....not saying this approach will work for everyone.

becjonz, Sounds like my older PANDAS son when he was in second grade. He was pale, lethargic, tired, etc. for about 3-4 months. He was also on antibiotics at this time....and, his tics were more prevelant. Turns out he had EBV (epstein barr virus.....almost everyone gets this at some point).....in teens it causes mono...but, in younger kids the symptoms are milder and easily missed unless you get a blood test for it. This phase lasted about 4 months and faded as the virus went dormant. This is just my experience with something similiar that you are dealing with. How old is your child? BTW......My son does not have Lyme or any co-infections. (neither of my PANDAS kids do)

yeah...makes sense Kimballot. Since s. pneumonia is the bacteria mostly responsible for ear and sinus infections....low titer response seems like it would make you more susceptible to these infections. I agree on the name part!

They are testing strep pneumonia titers to look for immune deficiencies. It does not mean that s.pneumonia is thought to be just as much as a cause/trigger for PANDAS than strep...although it is clear that strep is not the only trigger. Because many PANDAS kids (not all of course) have immune deficiencies, PANDAS docs will check out their immune systems. (also helpful in getting IVIG covered fo PANDAS if a deficiency is found) Checking response to the 14 strains of strep. pneumonia is standard practice when checking the immunse system. The doctor most likely feels that since your daughter passes the s. pneumonia titers, her immune system mounts good responses and will most likely mount a good response to group strep A....(ASO and AntiDnanasB titers). That is likely why he/she put that together..makes sense. Faliure to pass the 14 serotypes in the s. pneumonia titers does not mean your child will not mount a response to group strep A. There are many children who have failed the s. pneumonia titers and have SKY high Aso and/or AntiDnaase B titers (group a strep).

I am THINKING that he says strep pneumonia and the parents are thinking strep (as in group a) because of the "strep" in strep pneumonia. I can't imagine he is telling them this is their child's inability to fight off group A strep......being an immunologist, he HAS to know better. I think it is misunderstanding on the parents part 'cause we don't always know better. I hear this a lot actually (not just from Dr. B's patients)...parents thinking that the strep pneumonia titers are related to strep throat somehow...as mentioned, 2 totally different bacterias. There is no vaccine for group a strep.

Well, we did go to the gastro years ago and he didn't have an answer. He had a scan (name escapes me right now)...but the one where you drink the barium. It was normal. But, I was in there when he got the scan, and I was able to watch what was going on in his tummy on a screen. At one point, you could see the stuff just come shooting up his esophagus. Doc didn't mention it when I spoke wth him about results....just said it was normal and I could try antacids if I wanted. I read about rumination...interesting. Some things fit...some don't. Doesn't seem like it because he is growing and gaining weight normally and it just happens here and there. BUT, it is something to think about. It says rumination will not respond to antacids. I think I will try the cool bath thing first, then antacids. If neither helps...then, I'll have to got the doc again, I guess. But, IF it is some kind of internal tic.....nothing will help except time. Can tics be internal? Yes, he does get mild sensory defensiveness when PANDAS kicks in.(but we haven't had a major episode in almost 4 years) It was manly centered around large crowds in a small area. But, that can bother anyone, right? Not sure if it was true sensory stuff. No problems with clothing, noise, food, etc. The only other thing I can think of is he doesn't like kisses.......still doesn't. That can be normal, too, right? I could be mising some things. Can you have visual sensory stuff? If so....... how?

Thanks for the suggestions. No, he does not have his tonsils and yes, he is actually spitting up a bit when he does this.......you know...like a tiny bit of his dinner was in there! Weird thing is it is mostly centered around bath time. He didn't do it today before his bath....just during. And, he didn't do it after his bath. (well, almost when he was brushing his teeth...but, he brushed his teeth right when he got out of the tub...and it didn't actually happen)..... it hasn't always been at bath time...but, I would say 90% (or more) of the time it is. I'll look it up anyway...can't hurt. I'd really like to know what it is. Okay, so it is not ecdysis...I'll keep looking. Okay, so he took his bath not long after dinner. I found something where heat can cause vomiting/spitting up. I wonder now if it is the heat from the bath that is doing it? I'll have to experiment and give him a cooler bath before dinner. (he does like it pretty warm) Maybe it is not a tic afterall. (I hope not)

Can kids have internal tics? My younger son has had this thing for years on and off where he will spit up a bit in his mouth and then spit it out. I took him to Children's Hospital years ago to see the gastro and he was stumped. Didn't find anything. He says it doesn't burn and his belly doesn't hurt or feel nauseated. He does it mostly, although not exclusively, when taking a bath. Again, it is intermittent. He did it tonight 3 times while in the tub (spit out in the toilet...just a little bit). It drives me crazy because I don't know why he does this. So, I drilled him a bit. He says he can feel it coming because his throat feels funny. He says that he felt it coming on when he was brushing his teeth but it went away and he didn't do it. Could this be a tic of some sort? Reflux? Should I try some kind of otc antacid? I could try to see if it helps...if not....I would tend to think it is a tic?

Can't be positive that this is the same guy....but, I do know that there is a wealthy father of a PANDAS girl who has been backing/funding a lot of these studies. I know he contributed a lot of dough to the current IVIG study....so, perhaps it is him.

I have been wondering about you guys Michele...... Thanks for the uplifting update..... Great news!

Great job Denise! What I always wanted to do was to have everyone send 50 bucks to a trustworthy person. Once all has been collected in a certain time frame...we send it down. There are 1500 fan of Pepsi Refresh...if they sent 50 bucks in..plus people here and on other sites....we could easily raise well over 50K. Anyone interested? I'll put out an extra 50 bucks for her...she is our only hope for answers right now.

From Janice Z. regarding PEX and her daughter who was in the original Swedo study. Hi Kelly! Good to hear from you. Hope your boys are well. Yes, you are remembering correctly. Now, if I am remembering correctly, I was told that the second round of plasmapheresis would only have a 10-15% rate of efficacy, because the autoimmune process had already been set into motion. Meaning, I am assuming, the immune memory factor wherein the system recreates the defected autoantibodies as quickly as they are removed from circulation by PEX. That is why they say the treatment is "novel" and is only effective at the initial onset of PANDAS symptoms. However, since that time, I believe differing opinions exist about IVIG regarding long term immunological effects. It may prove advantageous for long term recovery results. My daughter is well. She has not ever had strep again since her bout with PANDAS. She is in college and is on the Dean's List with a 4.0 and was awarded an academic scholarship. She also received a couple of immunizations for her stay in college dorms and did not have any problems. Kelly, I still hold by breath regarding PANDAS. I continue to actively research and have made some interesting connections in my mind, albeit I am a lay person, about this process. Take care. Janice

Here is her website: http://www.e-pandas.com/index.html Searching the internet for almost a month after our ped told us about PANDAS, I was only ever able to find Janice's site, and the NIMH site. I didn't find this site until I finally googled "short term memory loss and strep" and a post came up. I thank God that I found this forum. Thank you Kayanne!

I don't know if you can...short of a viral panel to see if there is still IGM activation ...then, that would mean it is currently still active. I am guessing that my sons virus (what is it that causes warts.......? the human pappiloma virus???)...anyway, I am guessing it is dormant right now because of the lack of PANDAs symptoms, the warts are gone, and no new warts are poping up. When I said "dead" I was referring to the wart...not the virus. Once the warts form, they can remain for years even after the virus is dormant. The body just keeps feeding them....many eventually get cleared by the immune system over time with no treatment...but those stubborn ones, especially the planter warts that hurt the kids when they walk..well, I wouldn't wait.

PEX and IVIG have never been advertised as cures (well, except from one doc...but, personally, I believe that claim is totaly false) I like how Dr. Trifiletti put it....if your child is having a rough time, IVIG or PEX provides a strong, fast "cooling off". So, if your child is not getting back to where they can function well, then IVIG or PEX can bring them around to that point and put them into remission. But, proph. antibiotics are critical afterward to keep them doing well because, in my opinion, another strep infection, mycoplasma, vaccination, etc., will most likely bring back PANDAS symptoms. However, they may not be as severe and, your child may not react to as much "stuff" after IVIG or PEX. I am not sure I am getting the difference of an immunization and strep with PEX. Both stimulate the immune system and produce antibody production......wouldn't PEX remove the antibodies from the vaccination just as it removes the antibodies from strep? Confused. I think failure of PEX with many kids is that the immune system just replaces the bad guys after they are removed. Or maybe, some kids have too many antibodies and they aren't all successfully removed with PEX? Dunno....just guessing. But, I think it is pretty clear that IVIG and PEX are no cures, but, very helpful tools to put your child in remission...or atleast a better state. Interesting stuff I found about Guillian-Barr syndrome....an autoimmune atack....in many cases has been induced by vaccination. It states that treatment is with IVIG or PEX. So, I think that PEX should be just as effective with vaccine induced problems as it is with strep. Don't know why Janice's daughter didn't respond the second time, although I'd love to know how Swedo knew that...maybe it was the time frame. Note what it says about the effectiveness of treatment after two weeks from onset of motor symptoms. (I know these are different disorders, but, same kind of mechanism...interesting to me) "Once the patient is stabilized, treatment of the underlying condition should be initiated as soon as possible. Either high-dose intravenous immunoglobulins (IVIg) at 400 mg/kg for 5 days or plasmapheresis can be administered,[19][20] as they are equally effective and a combination of the two is not significantly better than either alone. Therapy is no longer effective two weeks after the first motor symptoms appear, so treatment should be instituted as soon as possible. IVIg is usually used first because of its ease of administration and safety profile, with a total of five daily infusions for a total dose of 2 g/kg body weight (400 mg/kg each day). The use of intravenous immunoglobulins is not without risk, occasionally causing hepatitis, or in rare cases, renal failure if used for longer than five days. Glucocorticoids have not been found to be effective in GBS. If plasmapheresis is chosen, a dose of 40-50 mL/kg plasma exchange (PE) can be administered four times over a week."

Yes......they are caused by a virus and PANDAS kids can react to viruses, so, I'd say if your child has warts, they were exposed to the virus that causes them....therefore, a possible uptick in symptoms. However, the warts can remain long after the virus has been inactivated. My younger son had 3 warts...one on his pinky finger, one on his pinky toe (both common warts) and one planter wart on the bottom of his foot. They were there for quite some time....I was hoping they would resolve on their own.....they do mostly, but, it can take years. So, we took him to the derm..he put some kind of "crushed beetle juice" (no joke,,my son thought that was awesome) on them...they blistered up and the two little ones came off in days. I had to continue with Comppound W on the planter wart after he bathed for an additional 2 weeks...then one day, he pulled it out of his foot! (it was dead by then) Yikes! But, they are gone, and no new ones are emerging, so, I am assuming the virus has been taken care of.

Seems like you have a direction. Just a side note ( I hear this a lot)...but, the flu has nothing to do with the stomach. The flu is all upper/lower respiratory, fever, chills, etc. When people refer to the "stomach flu".....it is actually a stomach virus...not the actual flu. I am not disagreeing with what you have decided. My kids had a stomach virus that lasted about 24 hours....just vomiting (yes, so much it was bile)...and in between vomiting, they were outside playing! lol Anyway, hope it resolves soon!

PEX helped rid her daughter of debilitating OCD...she didn't have tics. The anxiety sticking is Dr. K's observation............doesn't mean it is true for everyone. However, in many of the cases of PANDAS kids who are now older...even adults....many deal with anxiety issues. Dr K explained the opposite to me (again, doesn't mean it is the gospel)....that the out of control OCD, tics, rages, intrusive thoughts that the kids experience, and don't know why or why they can't control it, is the fuel behind the anxiety. DCmom.....all I know is that is what Swedo told Janice and it was true in her case. The PEX only had effect once. That would lead me to believe she (Swedo) had scientific reason to believe it. That would be a good question to have asked Swedo in the recent coffee talk. I can contact Janice and see if I can get more info. about it. She has always been so nice and helpful. Does anyone have her (Janice's) web-site bookmarked or anything? I know many of you may not of ever had the chance to see it. I found it years ago but can't find it now. Bummer...her daughter has to be about 18 or so now...I'd love to chat with her and see how things have been going. Let me know if any of you can find it or have contact info. thanks!

I believe so..or atleast that is what I have heard from Janice Zuilli. Her daughter was in the original Swedo study in the late 1990's. She received PEX and improved dramatically. She remained well until they gave her an immunization (forget which one....I believe it was the s. pneumonia vaccine...name escapes me right now...but I do know it was for recurring sinusitis) Anyway, she deteriorated badly after the immunization and Janice requested PEX again. Swedo informed her that it would not work the second time around.....they did it anyway, and Swedo was right...it did not work at all. Her daughter had to be managed with a "cocktail" of meds (as Janice put it)......until she got her period. Janice said it "just stopped" then. She is currently doing well...off all meds, but does deal with residual anxiety. Just like Dr. K says...the anxiety sticks.

Hi...just looked at your list. Please, refresh me a bit. (I don't obsessively read all posts every day like I used too...thankfully) Was she diagnosed with PANDAS? Was she evaluated for early puberty? It is not "normal" to have pubic hair in 1st grade. We had to take our son in for evaluation for early puberty in second grade (because there can be some serious causes)....he only had under arm body odor. They thoroughly checked him out....no early puberty...just stinky kid and started deodorant in second grade. His brother followed in his tracks and had to start deodoranr in secong grade as well. Any labs that help shed light on things? ASO or antiDNAase b titers? Myco?

My vote...I'd keep him on current meds and see if the stomach problems abate in about 24 hours. Sounds to me like it could just have been a simple stomach bug. It swept through our house lately....stomach pain, vomiting...went away, basically, in 24 hours. However, if the problem persists beyound 48 hours....then, I would check into changing meds. If you change too soon, and get improvement by switching, you won't know if it was the med change or the stomach bug resolving. It is always good to know what is going on .....sometimes people implicate too many things and change meds/supplements etc. before giving things a chance and then you really don't know what is helping/hurting.

"whole arm blew up, was hot and very hard"......sounds like cellulitis to me. This just happened to my friends child after a recent vaccination. They told her that if there is any bacteria on the skin, needle, etc.....the puncture allows it to get deep into the skin and cause an infection called cellulitis. (that is why your doc prescribed an antibiotic) It is listed as a possible "complication" of vaccines. My husband also got cellulitis in his arm...same description....swollen, hard, red. His was caused by strep. Two rounds of antibiotics didn't touch it (zith and I forget what else)....clindamycin cleared it up...that was the docs last resort before admitting him to the hospital for IV antibiotics. I agree with others in that it is not an autoimmune response.

Thanks everyone for the kind words. Music really can soothe the soul.

Video of my husband singing in church this Sunday. We need to remember God is in control.....look to him and he'll get you through. All I could do when my son was really bad was crawl onto the bed and pray for God to "just hold me up"....cause I was fallin'.......it is all I had the energy to say. He did hold me up and we got through. You'll get through, too. so.....anybody know someone who can get him a good gig or something?