Kayanne

Interesting....Chemar, could you recommend a good website to get an overview of "mitochondrial stuff"? I think it is important with any drug or supplement, to be aware of side effects of long term use--PANDAS is certainly one of those cases where the benefits outweight the risks...but as parents we still need to try be aware of vitamin depletion, and digestive issues from long term antibiotics. My daughter takes antibiotics every day so, Chemar, I appreciate the heads up about this. ~Karen

I never heard of it, so I googled it and found the website....It looks really good. The website has a free "teacher's guide" for download....that may address the minimum ages for this movie, and it may help you help your son to learn more from the movie. http://www.classperformance.com/ ~Karen

At her worst, my daughter would startle when you spoke to her, even if it was a soft voice....defensive is a great word, her posture and startle reflex seemed to be just that. It was one of the first symptoms to disappear when we started the prednisone. She had said that she thinks her art class gets too loud....not sure if this is a sensitivity right now or her concern that her classmates aren't being quiet when they should....she is definitely a rule follower. My husband often covers his ears when I am next to him speaking...I used to think is was because I was too loud because I have mild hearing issues...I'm not so sure about that anymore...He is also very sensitive to smells...

This could be really simplistic....but what is the life cycle of a cell? Does it all depend on the type of cell? If you have intracellular strep, then when the cells die, could there be an influx of strep or strep toxins into the body/system, causing an increase of symptoms. Okay...if you know that this is happening every month, do doctors know what types of cells have a monthly "life cycle"...could this help pinpoint an infection.... Alright....is it really obvious right now that I have no idea what I am talking about?.... !!!! ~Karen

Here are some previous threads that discuss treating the family dog for strep: http://www.latitudes.org/forums/index.php?...mp;hl=culturing dog&st=15 http://www.latitudes.org/forums/index.php?...594&hl=dogs http://www.latitudes.org/forums/index.php?...008&hl=dogs I hope this is helpful! ~Karen

I would like to say that I am sorry you are having such a difficult time determining what is going on with your son. I whole-heartily agree with the others’ sentiments that you get a second opinion—always follow your instincts. However, I think if it is feasible for your family, you should follow up with Dr. Latimer’s recommendations. As parents whose children have suffered from this, I think we can look at things with “PANDAS colored glasses”. I really want to stress that Dr. Latimer is a neurologist who treats many neurological problems…including seizures and PANDAS. She doesn’t need to be convinced that PANDAS is real…so I would definitely weigh what she has said in regards to your son’s case. It’s not like you were getting a brush-off from a doctor who won’t diagnose or treat PANDAS because they don’t believe in it or don’t want to learn to treat it. We certainly can NOT put Dr. Latimer in this category. That is why you should consider what she has observed with your son. I also strongly agree that you should have your son’s blood sent to Dr. Cunningham. I am a little perplexed as to why she didn’t want to go that route with him…perhaps she was just trying to save you the $400 cost. Okay….I am really scratching my head about that! I would love to have been a fly on the wall to hear the entire context of this…and her intonations/facial expressions. As far as leaving the club…well, I think we all know that it is way too premature for you to be considering that…besides whether your son has PANDAS or not….everyone is welcome. Wornoutdad, Yes it is the same test...the terms can be inter-changed. I think if you want a longer trial of antibiotics or steroids, then Dr. T would probably be your next step. From reading this forum, and his website, I believe that Dr. K feels very strongly that IVIG is the treatment for PANDAS. I'm not sure, but I think Dr. T is more aggressive with antibiotics first. I hope this helps, and I am sorry you guys are having such a hard time right now. ~Karen

I checked out the website, it is really wonderful!!! You must be so proud of you son. I'll have my daughter check it out...she will be seven in about two weeks, so I don't know if it will interest her a lot or not. She is doing so wonderfully right now, that it is a hard balance to strike between dwelling on it too much and/or acting like it is not an issue. I personally don't like the latter because after all, she takes antibiotics every day, she is always reminded of it.

Thanks for the info! Do you also take antibiotics? ~Karen

I'm so sorry you are going through this.... Is it possible to continue the steroid...you know we didn't see any great results until the end of week 4....on the "taper dose" of 5mg/day. What supplements are you giving to your daughters? Perhaps, you might consider insitol and or a supplement to increase serotonin... Equally important are good quality multivitamins....the B vitamins in particular.

2009 Yes, I live ouside of Reading, PA....An hour and half from Philly....I'm a Philly girl myself. ~Karen

I pulled this quote from Alex from another thread. I thought it was an important bit of info that needed a new topic. I checked out the website, it may be another tool to add to the PANDAS arsenal. "I was doing some googling the other day and came acoss a new time release amoxicillin called MOXATAG, which other then Augmentin XR is the only time release amox. The pill is prescribed as a once a day for Strep at 775mg per dose. I have long wondered if the reason that Augmentin XR and Azithromyicn seem to be the most effective antibioitcs for PANDAS is entirely due to the fact that they are the ones that remain in the blood the longest. Azith has a very long half life, 68 hours or something, and XR is extended release. Regular amox, penicillin, and other macrolides peak pretty quickly and then dissapate rapidly. For my son, we feel strongly that he is in an ongoing battle with strep. Anytime he has no antibiotic in his system, seems to me, that his immune system would have to take over and create the dreaded antibodies. I think it might be worth a try to give this new medicine a shot. For what it is worth, clavulinic acid doesn't really play any role in fighting strep. What it does is prevent other non GABHS bacteria from producing an enzyme called Beta Lactamase , making those bacteria susceptible to penicillin class drugs when they normally wouldn't be. GABHS has no resistance of it's own to penicillin/ amoxicllin. There's more to it but that is the gist. To help make my case I'll point out that Augmentin XR, the way our kids are taking it, has half the clavulinic acid of regular Augmentin, but seemingly works better for PANDAS, indicating that it is not the clav acid in the XR that is doing the trick. The extended release portion of the XR is straight amox. This new medicine is prescribed as a once a day but looking at the literature, it is completely gone from the blood PLASMA after 16 hours or so and at a prettly low level after 12. Two pills a day would guarantee constant coverage and still result in less total amoxiciilin, 1500mg per day, then the two Augmentin XR's kids are taking, and have none of the Clav acid, which can be pretty hard on the body. The website says the medicine is for people 12 years and older, but Augmentin XR is supposedly not for kids either. I am tempted to ask for it at our next appt. Here is the link. if anyone is interested. www.moxatag.com/ Alex" Thanks for the info, Alex!

That is Great News!!!! I'm keeping my fingers crossed for you!

1. I answered sudden because it was within a two week window. Her teacher distinctly thinks the change occured after she returned from Easter break (April14). We were seeing the changes happen at home....inability to make decisions and emotional lability. 2. Yes. She was being treated for a strep throat. She tested positive with a rapid strep test on March 11th, and three more times thru May. 3. Yes. I have four children...my PANDAS daughter's (6yrs old) antiboitics were not prescribed properly in the beginning. That is why I think she was hit the hardest. Two were also on anitbiotics three times each, and I have seen signs of mild PANDAS in my 9yr (stomach aches, mild emotional lability, mild anxiety), and in my 5 yr old (refusing to write when before he was interested in it, eating problems, bed wetting, cognitive inflexibility--more importantly theses problems "resolved themselves"). My baby never tested positive for strep, but was put on 5 days of Omnicef, when his throat looked red--the dr didn't do the rapid at that time because he assumed it was strep because the other kids had it....after that he always tested negative--rapids and cultures. He is a very particular child..his personality is a lot like my PANDAS dd...so I am watching closely.

1. OCD tendancies on DH's side of the family--and a lot of anxiety....I answered both tics/OCD because we have come to believe that my husband has some very mild tics....just didn't know what they were prior to all of this. We are not seeking a diagnosis for his tics because they do not interfere with his daily life...right now it is just panic attacks and anxiety that are causing problems. There is a history of autoimmune on both sides of the family. My maternal uncle and grandmother both had RF. I have obsessive tendancies with hobbies and things that interest me...so do my siblings. 2. I answered no, to OCD prior to PANDAS...but she was particular about some things....and I believe that there was an undiagnosed episode when she was about 3.5yrs. But I wouldn't have ever recognized it as OCD at the time...just thought she was "fussy." 3. My husband is a Land Surveyor....Engineering related.

Dee, Am I remembering correctly that Dr. L also prescribed topamax for your son?...if so, has it been good for him? ~Karen

That is absolutely fantastic news!!! I am so happy for your family....thanks for keeping us posted!

I've been wanting to tell you for a while, that I am really astounded at what has been happening with your family and friends...you guys really got a nasty strain....I'm really sorry! It must have felt like another kick in gut to get her CaM K results...even if you were expecting it. I truly appreciate all of the great info that you continue to post on this forum...it is very informative. Is there any way to determine what particular strain it is? You may have alreadly posted this, and I missed it.....if so, sorry....sometimes this board move so fast...it's hard to keep up. ~Karen

Ya know...I've been accused of having ADD, so my attention may wander...sooo about letting you know how it went...maybe I can. On another note, my DH was happy to hear of the this, and he told me to register him too before all the slots are taken because after all, space is limited.

I don’t think a dishwasher is necessary…how do you wash your dishes? If warm, soapy water is good enough for hands and dishes, it should be good enough for toothbrushes that are used only once by someone who isn’t sick. You could add an extra step of soaking them in very diluted bleach solution or peroxide, rinse, and then wash. Yeah, I didn’t see any floss in that picture. My oldest uses those plastic floss thingys for kids. The others’ teeth are still pretty spaced apart that I don’t really push them to do it. I plan on having a second container in the drawer with those things. I would also like my kids to use the electric toothbrushes, but they don’t like the sensations

Wow...I've not heard of taking both at the same time. Are you seeing any significant results?

I'm sure that he is a wonderful TS doctor and researcher, but Kurlan is a PANDAS naysayer who has published with Singer. I just registered. It is free, so it will be interesting to see what he has to say in light of the Columbia study and all of the press that PANDAS has been receiving.....I've never done anything like this before...is a webcam required? Does anyone have experience with these types of things. I think it is important to hear what he has to say...even if we don't agree with him. I would urge anyone who can to sign up because space is limited. ~Karen

Instead of printing it out...you could copy and paste it into a new word document....I know If I print something, It gets sucked into the abyss of my desk...but beautiful computer files are always easy to find and organize! ~Karen

Do you give your son any B vitamins? Especially B6 in the form of P5P...without that your body cannot convert nutrients into neeeded components...amino acids like Tryptophan will not convert into serotonin---and then melatonin if you are deficient in it. I hope this info helps. ~Karen

I found this blog entry.... http://luckythirteenandcounting.com/2009/0...ush-anyone.html At first, I was like ewwwww.....but you have to read the few paragraphs below that explain it. Well, I've been thinking a lot about this, and I'm going to modify it. I can't handle the idea of my kids brushing their teeth at the kitchen sink...imagine the "toothbrush spray" that gets on the mirrors suddenly getting on your dish drainer....not! We have a drawer in the kids vanity, and with 4 kids, I think sixteen brushes should do....the dollar store sells them in packs of four, I'm not expecting them to last very long especially if I always put them in the dishwasher. Even if you don't have a drawer, a cute container with a lid would keep the brushes clean. I have been using a suction holder that has larger openings with rubber flaps for the thicker handles (like a car cup holder), for the kids...and up till now it has been the best solution so far. However, there is always the white drips on the counter below; but I figured it's better than the sludge in the bottom a cup. The main problem with this holder has been that the kids brushes lean into each other, if they don't put them in straight. Also, if I switch to this system, then I can stop hounding my kids to use their finger to get the paste out....and an added bonus....I will probably buy the "Touch-N-Brush" that my kids have been begging for. I watch that commercial and I think to myself....whoever designed that thing has not has strep run rampant in their house. So, I'm going to return the cup to the counter, and this time this is where the kids will put the dirty toothbrushes. So, treat a toothbrush like a dish...have several, use it once and wash it. It's so brilliantly obvious that I wish I could take credit for it! ~Karen

This is a good thread about alternatives to SSRI's: http://www.latitudes.org/forums/index.php?showtopic=6566 I think a decision to use any medication/treatment is obviously predicated on the severity of the situation. My husband has used SSRI's and evey time he asked if there was an alternative or supplement to take instead, he was always told no. He has been having a hard time with a job change and longer commute. His reluctance to go back on an SSRI, caused me to search for alternatives. I just think that it is good info to know, even if you decide to give the SSRI a try. ~Karen