eljomom

Can i ask how Lyme would impact impetigo? 3 of my 4 kids have been passing it around all summer! thanks, wendy

Thanks so much for sharing. So what/how did you guys (before the Cunningham) figure out it was PANDAS? and not just Tourette's?? Also, what "other tests" are you waiting for. I am exactly where you are---I have heard steroids make tics worse, especially if it's a Tourette's case. I would love to connect with you and compare stories. thannks! ooppss double post. My dd9 has mostly tics. She does have some anxiety and possibly some ocd like behaviors when younger not now though. I have reached out before to tic only parents before so I understand where you are coming from. I am not sure I have much to say that will help you because I am in the same boat. We just got our cam k test back that shows my dd is in the above ave pandas range. We are waiting on some other tests too that will hopefully show us something. I have to tel you that I was and still am always looking for "something to help" in the interim. I have not found it. We have been dealing with this for 5 yrs now. We have tried so many different things and nothing has helped..yet. I have made some nice contacts and friends on this forum and they have helped me to understand it is one day at a time. Get a good doc and listen to him/her. Test for everything. I do believe if there was anything that has helped us it is changing our diet. We keep out diet clean, organic, limit sugar, avoid "bad stuff", lean proteins... My dd has never done well on supplements so I stay away from those or maybe I just have not found the right combo of them yet. We do some probiotics but usually like to get it from food source instead. We have tried antibiotics with no results. We are faced with the decision to start steroids, but I am nervous about that. I understand that there is inflammation but I have heard stories of tics worsening from them. I have had a lot of support and the general thought is to just do it - so I think I will but pray like mad. I am not sure if this story helps at all. I just want you to know that I am happy to share our experience along the way if you would like. MY advise is to stay the course, dont give up, even when the tics get bad (as it is for us right now) just know there is something that can be done, we just need to find it. Good Luck.

Stephanie--can you tell me where you get that? I don't understand the "standardized to 20% oleuropeins). I have heard that Dr. Murphy in FL might recommend some supplements--do you see her? If so, can you share?

Hello, I've posted a few times here about my 6 year old who had a couple tics and some mild ocd, and then within a week of a 24 hour "fever" she started having more and more tics--over a dozen now, head to toe. She's never "had" strep---but I've never had her swabbed. I just have let fevers/illnesses work themselves out in her life, other than pneumonia twice. Just a reminder, my brother had Tourette's, so I am trying to weed that out, or week pandas out......as my father in law had rheumatic fever as a kid and died at 44 from his second heart attack. She definitely has the separation anxiety, not wanting to sleep alone (i have 4 kids, so her 8 year old sleeps in her bed with her), not wanting to go anywhere without me--even to play at a friends. She is ocd-ish, but not to the point of not functioning. Just stuff like having to have her hair braided before putting on her shirt, having to stretch out the armpits of her shirts, can't touch her food, shoes don't feel right, sniffing her fingers, etc... She got the hyperactivity, but has always been on that side. That being said, I couldn't get a doc to even run her titers until over three months after this started. Still waiting on those results. Also waiting on Cunningham test. Tests were done last Thursday. I know she quite possibly could have had this going on chronically, and something tipped her over the edge end of June--maybe not even strep (PITANDS). I am wondering, if there is anyone here who presented more like my daughter, with the tics being the prominent feature. She was a kid with a couple tics, and within a couple weeks, a kid with head to toe tics. It seems like the severe ocd is what most people here have going on. I would like to connect with anyone who has the tics--like tons of tics suddenly. Also, I am awaiting an apt. with Dr. Latimer...not until Dec. 23, which will make it 6 months since things went south. So I am wanting to start her on some supplements....maybe....for her immune system and inflammation. I am wondering if anyone uses anything helpful?? I was talking with a woman last night who saw Latimer, and she described the steriods as something to "supress the immune system" which is what you "want to do" to get the antigens to stop misbehaving. Thanks for any input. Wendy

Very interesting! So have you done any other tests? Is Cunningham going to be the first one? The ASO and antiDNaseB seem so iffy that I almost feel like "why bother?" If they're high, it might not even mean pandas, because normal kids can be elevated after strep, and if it's low, sometimes pandas kids have low titers!!

It was impetigo....guessing staph since that's what son swabbed for over the summer, and theyve been passing it around. although he said it could be strep too. he said Keflex would be good, and I asked about Augmentin, he said fine. Wouldn't do titers...said I had to see a neuro b/c he doesn't test for stuff he doesn't really buy into or understand:(

So sorry for all the questions--but I feel like I have an opportunity here with this recent skin infection. Are antibiotics even helpful if you are 3 months after the original non-strep infection that started the tics??

Stephanie thanks for your reply...I noticed your signature line, and wondered if there was anything from the pandasnetwork group that I might be able to give my pediatrician to bring him up to speed. I mentioned her sudden symptoms a month after they started, when I was in for my 11yr. old's skin infection, and he said "the boy in here before you has TS and mom runs him in every time his tics "wax" for a throat culture.." with a tone like he thought it was nonsense. Then he swabbed my daughter---which was negative (nurse told me results) and that was the end of it. No titers, etc. Now were 3 months out and i'm not sure it's even worth running titers, as this may all be from a pandas reaction earlier in her life (I never take her to the doc...very rarely....just let everything run it's course), where the one night fever wasn't strep at all, just a virus (many kids had it), so why even run titers???

Wow--again! I keep turning up more info, and now have more questions. I've posted about my daughter (6) who suddenly developed tics (many!) within a week of a fever. never tested for strep, and it was less than 24 hours and she was fine again. has always had some mild ocd and one or two mild tics, but within a week of the fever, exploded. so it's been 3 months, and i'm taking her in tomorrow for a skin infection. She had it first in my family back in July, I think (after the fever/tics started). I kept puttiing neosporyn on it, and it took a few weeks, but it went away.. My 11 year old son then got it in a number of spots (from bug bites???), and he finally had to take an antibiotic. then my 8 year old got the skin infection...antibiotics. then my 11 year old again...antibiotics again. They cultured my 11 year old the first time he had it, and it was staph, not strep. but now I just read here that impetigo can cause pandas???? wondering if this could be impetigo? but mainly, can the staph be exacerbating things?? still wondering the best antibiotic (hoping my ped. will listen to my suggestion) that would kill the staph AND fight the pandas.... going for an early apt. tomorrow then camping, so if anyone can reply asap--would appreciate the wisdom. thanks!

Gosh, you've been through the wringer with two kids having it! I'm still trying to figure out how antibiotics help when there's no active infection??? Can't wrap my brain around that, hard as I try. Antibiotics help with antibodies???

How did he get diagnosed? Wondering if I should request the titers when I'm in for the skin infection?? Is 3 months out from fever too late to check titers? Also, what antibiotic do you use?

I have a question about pandas symptoms.....after doing more reading,and hearing many posts here, I am wondering if there are pandas kids who suddenly develop tics, with little else? My daughter has always been a little ocd and clingy...the tics came pretty suddenly (she had a nose wrinkle tic, and smelling fingers prior) after the fever, at least a dozen. But other than that, she's happy, silly, if a bit "energetic." Also, I may take her in for a skin infection, and wondered if I should suggest a certain antibiotic and maybe "kill 2 birds with one stone?" She had this 2 months ago and I never brought her in. Two of my other kids had the skin infection this summer, and both needed antibiotics, one did twice. So I thought maybe I should go ahead and treat (they swabbed one of my kids and it was staph). Any thoughts?? Thanks!

I feel like I'm beating a dead horse, but if there is no active strep going on in the body, AND pandas is caused by the antibodies, AND IVIG works (that deals w/the antibodies), then I'm still not grasping why an antibiotic would help.....sorry to keep needing things explained. I feel like one minute, I understand, then the next, I'm going in circles again. Also, I've looked at the links to the Cunningham, but could someone in laymans terms, tell me what exactly the Cunningham's is testing for, AND why it's NOT looked at by most docs?? thanks for your patience w/me..

so my question is if you and some others kids' had low titers, what finally distinguished between Tourette's and PANDAS?? From what I've read, Tourette's can start abruptly in some, and waxes and wanes.

So does your son have pandas? he had low titers, etc. How was he diagnosed?? Forgive me if you already mentioned this...I can't keep everyone straight. My husband is NOT too thrilled (or willing) to pay $400 for something that he hardly notices b/c he's not with her all day, and for some reason just doesn't bother him like it upset me. Now what??

Thanks--I will check out that book for sure. Hoping the link will take me to an order page.... Have you heard of Nature's WAy Cal, Mg, Zn?? I'm still trying to figure out how to navigate on the board here--when I log on, it says that I have "0" unread notifications, but decided to just check and saw this post...I so appreciate finding this:)

Thanks! I really just want to find a doctor who is versed in TS and PANDAS, and will do all the thinking and figure it out for me. Eliminate what needs to be eliminated, not based on the fact that they don't believe something exists, but also not jump to conclusions and go hog-wild on the PANDAS road. Does that make sense? Arent' there docs out there who get both issues and weed things out?? I figured my local TSA (TSAGW) would be a wealth of info, with their medical advisory board, etc. Figured if they are on TSA, the get TS and probably get the possibility of PANDAS as well. But after leaving 3 messages over the past month plus an e-mail and getting no response, I am disappointed. IN the meantime, I would like to start with some harmless supps, like the Mg and Inositol. I will look at your link---hoping you give doses that are safe for a 6 year old. Also, you mention Natural Calm....I have also heard that Ca-Mg-Zn is a good combo. Which do you recommend?? I assume I wiould give the Mg at night, but when for the Inositol? Thanks again, wendy

Ugh, just did bedtime, with little one sitting on my lap while reading and her twitching away--makes me very anxious! Anyhow, in regards to the ASO and the other strep titre, we are almost 3 months out from the fever, so are we past the point of even testing for those? It said one peaks 1-3 weeks and the other 6-8....or something like that.. Here is an early thread that is a bit of an intro to the Cunnnigham test http://www.latitudes.org/forums/index.php?showtopic=4834&start=0&p=33300&fromsearch=1entry33300 CaM kinase activation is something that is measured in the Cunningham test. If it falls above a certain range it is suggestive of PANDAS. Results below a certain range (100 or so) is more suggestive of tics (non-pandas)/tourettes. Herx is something that people talk about with Lyme disease (mainly). I believe it refers to certain symptoms worsening with antibiotics...perhaps b/c bacteria is dying off or being released. (Someone will correct me on that....)

Do you know if Dr. Latimer is also versed in Tourette's syndrome??

Do you know if Dr. Latimer is also versed in Tourette's syndrome??

Hello, Can you tell me what type of Dr. Susan Perlmutter is??

Thanks for explaining that. Can I ask my pediatrician to order the Cunningham test? Would he also run the anti-strep titres? If not him then who runs those?? Here is an early thread that is a bit of an intro to the Cunnnigham test http://www.latitudes.org/forums/index.php?showtopic=4834&start=0&p=33300&fromsearch=1entry33300 CaM kinase activation is something that is measured in the Cunningham test. If it falls above a certain range it is suggestive of PANDAS. Results below a certain range (100 or so) is more suggestive of tics (non-pandas)/tourettes. Herx is something that people talk about with Lyme disease (mainly). I believe it refers to certain symptoms worsening with antibiotics...perhaps b/c bacteria is dying off or being released. (Someone will correct me on that....)

Oh, I am so utterly confused now....i just rabbit-trailed on links and saw "herx" and "camK" and all sorts of words that are overwhelming me....a whole new can of worms I haven't opened... How do I get these tests done? Also, it worries me that it seems like antibiotics help for a bit ,then you have to go back on them....questionable??

Yes, that is part of the problem, is finding a competant doc. I love our pediatrician, but when I brought it up with him, he said his last patient has Tourette's, and every time the boy gets a virus, his mom rushes him in to have him tested for strep. Sometimes it is, and sometimes it isn't. He then swabbed my daughter's throat (over a month after resolution of her one-night fever), which of course was negative. He said we could take her to a neurologist to make sure it wasn't some sort of seizures she was having. We just switched our insurance to a very high deductible on sept. 1. Sure wish I'd done some if this prior:( Can I ask what kind of dr. usually has knowledge of Tourette's AND PANDAS/PITANDS? who will make an educated decision about things based on that expertise? Also, what is Myco P testing? Never heard of that one. Thanks so much for your input. I'm so sorry you have had to go through this and feel the pain on behalf of your child...that's the hardest part---the pain we feel for them. \

I am posting here and will post on the pandas forum as well. I am a bit weary of posting on the PANDAS forum--and PLEASE know that I don't mean this in any way to reflect anyone's willingness to help here---but I am not certain this is PANDAS due to my family history, so I don't want to jump to conclusions that this is what's going on. Hope that makes sense? But I am looking for direction, as I think I am going to also need something for the ocd I'm feeling in regards to figuring this out;) I have a daughter who will be 7 in December, who suddenly developed a bunch of tics within a week of running a high fever for one night. There were a bunch of kids in the area who had that, and none of them had strep, so I didn’t take her in. She was totally fine the next morning. In any case, I am wondering if tourette’s can start so abruptly like this? My brother has Tourette’s and OCD, so I know it runs in the family. My daughter has been a bit OCD for as long as I can remember (won't eat the last bite of her own sandwich b/c it's been touched, won't eat things that have been touched at times), very particular about how clothing feels, etc. She started a tic this spring where she twitches her nose, and also has been sniffing her fingers for a while (and does some weird finger straightening thing right before sniffing). About 3 or 4 months ago, she started to always be rubbing her scalp (my mom and I do this--possibly trichotillomania in some form?). On June 24th, she ran the fever, and within a week of it, she was doing the nose/mouth twitch, but then adding a jaw movement, where she sticks her lower jaw out and sort of chomps 3 times right after the nose/mouth twitch. Also a head shake (fast then slow), finger stiffening/fluttering, arm stretching. She’s blinking her eyes funny and raising her eyebrows, and also opening her eyes real wide in a stare. Now there's even a little tongue thing where she licks her lips. She just added a toe stretch and kicks her knee so her heal comes up. This week she’s added this thing where she shakes her arm(s) or leg(s). She is also doing a strange staring gaze off to the side, where she does it over and over (she also does this with her eyes). She does seem to be more hyper, but also spaces out/gazes sometimes. Now the tics seem to all come at once, like she'll run through the whole line of them in a spurt, like they are almost deliberate, then take a break. I have heard a bit about PANDAS, but not sure what really is done for that—antibiotics seem irrelevant when there is no active illness, and I doubt I’d go through plasma exchange, etc. Plus, where do I start with that one?? But at the same time, my “normal” little girl at the beginning of the summer is like a totally different person now, ticcing all the time. She stops ticking when she is very focused, like when she’s drawing. TV watching is the worst! I am concerned that I might mess too much with her brain chemistry by interfering with it (friend of mine who's son has MILD TS swears by 5-HTP), as my oldest daughter outgrew her tics after about a year (see below). At the same time, I don't want her to suffer. I think it bothers me more than her--in fact, I feel horrible, because one day I just got angry at her and imitated her, and I can tell she’s looking at me to see if I’m looking at her. Any time I look at her, and even her sibs, now she says "What?" I feel horribly guilty about this, as she has always been my "baby" who snuggles with me, and no longer does since starting the tics. Although she is very clingy to me. My friend swears 5 HTP is the answer, but not really sure how that would help Tourette's?? I have 4 kids, and when my oldest daughter was 7, she started having a few really complex tics--bending over at the waist, pushing her belly out and in--really weird-looking stuff. She did an occasional are straighten and neck thing, and some toe curling. I video-taped her, and showed it to a pediatrician who has 2 sons with TS. He said you only medicate if it's affecting the child physically, emotionally, socially or academically. So we waited. She finally subsided with these tics after about a year, but still has some mild OCD. (She was on and off Zoloft from the time she was 5 until about 9). Evening up--scratching one side, then the other, touching things with both hands. In fact, all 4 of my kids do that. They are all sensitive to tags, socks, etc. My 3rd child also has had episodes of throat clearing, and wrist wringing---she is 8, and these seem to have stopped. So, my questions are: Do you know Tourette's to start so abruptly with an explosion of a plethora of tics? Or even Transient Tic disorder? I just wonder if this is a normal start to Tourette’s? or if there could be something related to her fever and it affecting her brain? I don't know if I should bother with a doctor, since “children have to have motor/vocal tics for at least a year”... and then try to medicate after that point. As a mom, I feel like I want to do something, but don't know where to begin. I called our local Tourette Syndrome Assoc. (TSAGW) 4 weeks ago, but haven't heard back. My husband feels like we should not make a big deal out of it and just wait it out. It doesn't make him stressed or sad (I say, ignorance is bliss!) And would I go to a neurologist, psychiatrist, or some other doctor? The fears as her mommy---is she happy, will anyone love her, will she be teased or thought of a a weirdo with mental problems? I know these things bug her a bit, because after a big long string of tics, she'll say "ugh, I'm tired." I’m happy to hear anything you might be able to tell me. Thank you for listening, and for any insight. Regards!