poetmom

My ds developed a sensitive scalp and couldn't stand the feel of water on his head (this is a lingering symptom though to a lesser degree) though it doesn't seem he was quite as bad as that, it was very traumatic for both of us and a big, big challenge. In his case, I would definitely say it made a big, negative difference after he'd had strep (in throat or ear) and antibodies were in high gear.

Thanks Nancy. I was looking for some feedback from someone with an older PANDAS child to tell me if they are also seeing a difference. Nice to know you're also seeing less dramatic responses. This is the first time I haven't noticed any response to having strep (or being exposed) so **fingers crossed**. I am definitely grateful, but cautiously optimistic. Do they really outgrow it? That would be a miracle. It's so strange to be able to talk to him about it now. I talked to his teacher today and he said, "so you told her to look for if I started acting looney?" HA He's got a great attitude about it and said, "Maybe this time I won't have ANY PANDAS!" What a trooper! He is on Augmentin for an extended period just to be sure and then will be cultured afterward in the hopes that we've gotten rid of it entirely and it doesn't just ... migrate, which has happened in the past. Augmentin has always been our most successful abx of choice.

I haven't been on this forum in a long, long time, but today feel the need to peek in.... because my little PANDAS man has strep. Ugh. I'm posting on this string because it has the whole crazy background of his original story (in case anyone cares to reference it). He is now 9, turning 10 in March. I know he has residuals...things that have never really gone away, fears, etc. But I'm the only one that sees it. In fact, some of it really gets on people's nerves because they just don't get it. Example: this past summer we went to the beach. His extreme fear of water, which remains, had me on edge, but he was determined to boogie-board with his sisters. And he did cautiously, fretfully, screaming demanding instructions on how to help him, but successfully (oh, the patience it sometimes takes!) right up until the wave knocked me down, him off the board, and I couldn't get up fast enough to keep him above water. I braced myself for the fit he would throw. He was mad at me but saw the wave had clobbered me too, so he marched out of the ocean and sat on the sand...for about 5 minutes when a miraculous change occurred and he decided the ocean was pretty cool and he wasn't going to let one big wave spoil the fun. I digress... I am the sole existing witness to the full extent of his illness (we've moved, so his doctors are new, his teachers are new, my ex is remarried, and his siblings don't have clear memories... in fact, rereading the story I was surprised at details even I have forgotten). And now he has strep. First symptoms night before last, confirmed yesterday at the doc, abs started last night. AMAZING NEWS: no PANDAS symptoms So..... here is my reason for checking in today....... I am grateful. Yes, eternally grateful. I am also terrified, confused, hopeful and waiting. IS HE CURED??? HAS HE OUTGROWN IT??? Did we just dodge a bullet and are incredibly lucky? Is it really just a particular strain and this isn't it? OR..... should I brace myself because even though in the past he just had to be exposed (not actually contract) strep and he would react immediately, is it possible the worst is still yet to come and I've made the call all too early that we are in the clear? What's your experience with a positive strep test and NO PANDAS REACTION? Thanks.

We see Dr. Mazade, an Infectious Disease Spec in Cooks Children's in Ft. Worth. If you search for his name on the forum, you'll see multiple threads where I've commented on him. Sorry I don't have time to expand right now, but on my way out of town, saw this, and wanted to get you an answer. Hope that helps!

I believe my final count on the proxy votes I sent you was 90. I hope to get more during my trip this week and will send them to you as I get them as I won't have ability to vote next week at all. I have also been given permission this morning to post this to the homeschool board I'm on...so I'm hoping it goes viral on homeschool boards!

Stephanie - Just a thought: I learned with his sensory sensitivities that taking him to the beauty salon and letting them wash his hair was sometimes worth the expense and nerves. It still scared him/bothered him, but because it was a stranger, he wouldn't scream and fight. He preferred it because it was over quicker and at the worst of his sensory issues, it limited the amount of his body that had water running over it. I found it a relief not having to fight him.

Thanks everyone for sharing that with me. With all the challenging days, I think it's importance to recognize the good days too! :-)

So my ds who was last week officially declared "in remission" has very few remaining symptoms. I can pick them out. Some of you might recognize them. But someone on the street would never notice. The one big, huge change that remains a constant struggle is his fear of water. As an infant he loved baths, at 9 mos we took swimming lessons and he loved them, and as a toddler he loved the pool. But with PANDAS he suddenly developed a combination of sensory issues with the feel of the water flowing across his skin (particularly his scalp) and a virtual terror of water itself. While the sensory issues seemed to have resolved, the fear of water remains quite strong. It is real struggle...okay, let's be honest...it's a freaking nightmare to wash his hair!! He's afraid the water will be too hot, too cold, too hard, too fast, get in his eyes, get in his ears (which I used to think were due to ear infections and sensitivity of his ears, but he's actually afraid of what the water will DO in his ears and not being able to get it back out). He loved to go to the pool last summer but spent a large portion of the time cautiously avoiding splashes and watching everyone else play or clinging to me. He loves water rides and begs to go on them, though they scare him to death and the moment we're on them he wants OFF (always too late). SO... in an effort to continue to help him move beyond this fear, I signed him up for private swim lessons and he went to the first one today. SUCCESS. He spent the entire afternoon grilling me with questions on "what are they going to do?" "am I going to have to go in the water?" "I can only hang onto the wall for 10 minutes" "what happens if water gets in my eyes?" I promised goggles (didn't use), ear plugs (didn't use), constant supervision, etc. He declared 10x "Nope, I've changed my mind. I don't want swim lessons." But we went. I have to tell you, he shook the whole half hour. He was excited to be there and smiled and even BLEW BUBBLES!! He refused to do some things and got mad at one point at the instructor gently trying to convince him one too many times to put his hands on his head. He shook like a leaf out of fear, uncontrollably, but never wanted to get out and enthusiastically continued. He wasn't cold, but imagine how a child would shake if swimming in water that was 40 degrees...you get the idea. BUT HE DID IT. And he's proud of himself and can't wait to go back. It was all I could do not to cry for joy for him right there in front of all these strangers who could never imagine why I was crying, because at 6, he clearly recognized his accomplishment. So hope continues and I had to share. It was a good day today.

Ibuprofen is an anti-inflammatory - if the theory is correct that PANDAS is caused (or in part caused) by inflammation of the basil ganglia, then an anti-inflammatory would reduce inflammation and improve symptoms. I'm just thinking out loud here, but I would think in order for it to have any significant affect, there would have to be some other combination (like zith or augmentin) to combat the CAUSE of the inflammation or relief of symptoms would be nil, mild and/or brief.

http://www.wfaa.com/news/A-side-effect-of-...p-93004404.html Very, very cool. I can only imagine one of you is behind this... KUDOS!! The page links to the Pepsi/PANDAS vote page. Wish they'd said more about it, but take what you can get.

There's a funny little post on Skip's page tonight that reads: Audrey Grams I finally figured out how to work the third way to vote and now you will get even more from Phi Theta Kappa food Pantry So I thought... well, I know I can log onto the site and vote, and I know I can ALSO log on to my Facebook page and vote.... so it occurs to me, i wonder if i add a widget to a website if I can vote a THIRD time. I don't have my own website or blog and the code doesn't work on MySpace. Anyone out there who can test?

22!!!!!!

Our XP: my son is always calm on fever - i think it has more to do with the fever making him feel worn out though (general malaise) than actually calming the PANDAS symptoms. As for fever on abx - my ds had 9 ear infections during the first year of PANDAS and was on and off abx until they put him on them for an extended period trying to specifically treat PANDAS symptoms. he had a consistent fever that I really don't think had much to do with a virus or the ear infection because ear infections weren't tied to them, he didn't always get a fever with them, and he could have a fever even without any other symptoms of illness. During that period, even in the absence of an ear infection, he would often have a low grade fever (99-100) for as much as two weeks at a time without break, then stop for a few days, then show back up and I'd take him to the doc and they'd find....nothing.... We used a combination of Tylenol/IB as described above. I think now knowing about the theory of PANDAS causing inflammation, I'd tend more toward IB for it's anti-inflammatory properties though. it was kind of frightning because he'd have no infections of any sort or even a low grade fever and (aside from PANDAS tics/OCD, etc) be fine, then in a span of 15 minutes spike to 103. At one point, the doc tested his blood stat for liver function, blood infection, and we even looked at things like leukemia (i count my blessings with PANDAS, frankly) it was not until we actually got the PANDAS under control and were clearly on the path to moving away from a catastrophic episode that the fevers disappeared as mysteriously as they had come. For the record, i know some kids tend towards high/fast fever spikes; my ds previous to PANDAS was never one to spike a high fever or spike one fast. fevers prior to PANDAS were never a great concern and the PANDAS fevers were entirely out of character. Although he's had fever a couple times since, it's also been more like pre-PANDAS so I personally tend to count it as one of his PANDAS symptoms and not a secondary, unrelated symptom.

It's been horrendously slow today. I keep getting messages from folks not on my proxy list who are voting themselves and complaining about the site. A couple decided to add themselves to my proxy list afterall because they didn't want to deal with it anymore... not good.... I suggest you close your browser and try again. Seems to help a *little* today.

Laughing at myself...thought you guys might need a chuckle... So...you know you're "hardcore" (some of my friends might call me "shameless") when you even manage to convince the air conditioner salesman you just paid to vote for PANDAS...and when you have him so convinced he offers to put it up on his Facebook page BEFORE you have a chance to tell him there's actually an app!! ha ha ha yeah, I'm THAT mom. :-)

I love Facebook. The Ride 192 page gives a link to vote for us as one of the organizations that are supporting his cause. http://www.facebook.com/search/?post_form_...&ref=search I sent you privately his personal information to contact him directly. Let me know how else I can help.

Have you spoken with the folks from Ride 192? They seem to have moved up and have fluctuated all day between 12 & 13. They are 5K so that would give us the third category.

I believe the L. stands for Lactobacillus, which isn't strep. But as far as I know, strep would be in anything labelled with S. Lactus or S. Thermophilus. At any rate, here's an interesting paper on a study that mentions the function of the strep in these kinds of food cultures...for those who have children who are intolerant. It's an old study, but I imagine probably still pertinant. As I understand this (none of us are lactose intolerant so I admit I don't read up on it much), the cultures that have strep are also higher in lactase. http://jds.fass.org/cgi/reprint/59/12/2031.pdf Just as an aside, S. Thermophilus is also the starter for mozzarella cheese. Pizza, anyone? I haven't noticed if we've had any mild flairs with yogurt, but I hadn't known this either so I wasn't really looking. S. Thermophilus isn't classified as GAS though, it's classified as a LAB (lactic acid bacteria), so I'd be curious if an informal survey on this group would show it's only those children who are lactic acid sensitive that react?? Really though, I don't know what to think of all this. I'll withhold opinion (since I don't really have one) but if we're going to theorize ANY strep can cause PANDAS symptoms and not just strep A, then I will point out in a devil's advocate sort of way that S. mutans are also in the strep genus, are the leading cause of tooth decay, and are carried by virtually everyone. Furthermore, while wondering how I came in anyway to suddenly be defending the nasty little bugger strep, I will note that last February my PANDAS son was diagnosed with mild pneumonia. S. pneumonia, which also a strep genus, is different from S. pyogenes, which are the leading cause of throat/tonsil infections... along with ear infections, sinus infections, bone infections and arthritis. Strep A is also the cause of impetigo and cellulitis. See below on M proteins...while S. pneumonia is "technically" a GAS, as I understand it, he remarkably did not flair. He DID however flair when his sister (not him) tested positive for strep throat a couple months later. What is more fascinating to me is something I read recently regarding the M protein classifies which a strep bacteria as a group A strep: "There are more than a hundred varieties of group A Streptococcus each of which is distinguished by the type of 'M' protein it has. The M proteins serve as important virulence factors that help the organism resist phagocytosis (cell eating). Two M18 proteins in particular caught the attention of the researchers. They look like another M18 protein, called SPEC, which triggers a massive immune reaction in host cells and leads to streptococcal toxic shock syndrome, these types of protein are called superantigens, which allow the bacterium to survive in the host for an extended period of time." So.... not being a doctor, a geneticist, a scientist or a researcher, I ask: Is it possible there is a specific type of strep A bacteria not yet identified with a SPECIFIC TYPE OF M PROTEIN (or some other uniqueness) that causes PANDAS? I don't know that anyone has or has not so specifically looked at exactly WHAT strep A it is that our children have had. Does anyone know if the rapid strep tests or cultures are specific only to ANY strep A or just to the strep that causes strep throat? Would it be possible this further explains why only certain antibiotics seem to have the best effect on PANDAS strep? I could be talking out of turn here. My degree is not in medicine or genetics. ;-P

Thought I'd just point out I noticed this morning although I'd already used all 10 of the votes I had for the email address tied to my Facebook account... when I looked at the Facebook Vote app this morning... it's giving me an addition 10 and letting me use those votes.

Okey doke - will do. As you're forming alliances, please know I now have 66 votes and should have more tomorrow, so add them to the number we're willing to give!!

Dr Mazade has my ds on abx now. He was adamant in the beginning my ds remain on full dose a while long and then be on prophylactic abx although I initially had fears about long term abx at the time. He seems to clearly understand the cause/effect of strep in PANDAS as well as any of us do and does not in anyway question the validity of such a diagnosis. He does seem to have a pretty strict definition of PANDAS criteria. He has said he sees lots of kids whose parents are unhappy with a "not PANDAS" diagnosis, but felt their kids were clearly OCD, Tourette's, Autistic, etc. He NEVER ONCE questioned whether my son was PANDAS. I'm not sure I could agree or disagree with a diagnosis of "not PANDAS" in another child as I'm neither a medical professional nor am I confident I could intimately understand quite the dynamics of someone else's story to make that call...but that has been the only negative criticism I've personally heard of him, for what it's worth.

Augmentin is what worked for my son. His PANDAS symptoms had a distinct positive reaction to the Augmentin but he had to be on it for +6wks before he quit reacting to being taken off it. He was on several other antibiotics at the time that had no affect on the PANDAS.

We see Dr Mazade in Fort Worth and I really like him....

FallingApart - I don't think I clarified well ... my ds is on penicillin vk for prevention. He was put on this after more than a month (I'm going to have to pull his records and determine exactly how many weeks ... but at least 6) of Augmentin. By the time we stopped giving him the Augmentin, it was clear the symptoms, which had been steadily and ever-rapidly getting worse, were not only no longer getting worse but beginning to VERY slowly subside. (Constant fever was gone, insomnia subsided, mood swings were better, OCD was calmer, tics were milder.) As he did not get WORSE again taking him off, we moved to prevention. Yes, it was a LONG road to back up - 2 1/2 years. I think the goal in the beginning was always to regain some control and reach a plateau where we felt like he wasn't consistently moving backward. So while I say I wouldn't want him on Augmentin for prevention...if I felt it was needed long term to irradicate the cause of the symptoms, that is for treatment, I would keep him on it as long as necessary (and add whatever seemed reasonable) until he quit reacting to being taken off of it. I say this because it seems to me if we're treating him and he's reacting to being taken off treatment, we simply haven't finished treating yet and should stick with what works and not rush things. Others may have different experiences and opinions. This is my Plan A: Step 1: Treat/get rid of the &%#@ strep (or whatever the cause is lyme, ear infection, allergy)!! Step 2: Stabilize PANDAS symptoms Step 3: Determine treatment plan that will maintain stabilization and avoid reinfection allowing the child to heal All easier said than done, but it seems for now it's all I've got. I hope that makes better sense. Don't ask me what Plan B is. I really don't have one!!

>>A strategy that is very important to winning this game is that we all need to be going out to co-workers, social organizations we are involved in, friends without computers, church, e-mail contacts, etc., and asking their permission to use their information to vote for them.( they need to be 13 or older) All they need to do is give you their name, birthdate, and e-mail address. You can choose one password to keep it easier for yourself. So, in essence, you will be coming home with your list of people who have given you their permission to vote for them, and, you will be casting their votes for them everyday! Once the alloted e-mail slots that your internet network provider allows you are used up, you can then make unlimited g-mail accounts for free. So, go out there and get those names and come back and place votes for them! << Sometimes I feel like a real dunce!! What common sense... so suddenly, I have 23 new votes each day (and counting). THANKS FOR POSTING THIS. I guess I'm going so many different directions something simple like this didn't even occur to me... yikes!