eljomom

Thanks Vickie. where are you? we are east coast, in virginia. They called back and nurse said that other ped. loves zith. for strep, but that she would call in keflex. So i went with that. Also, dd9 is allergic to augmentin.

From what I understand....and I may be wrong....Cunningham's tests are NOT specific for strep. Antineuronal antibodies are antibodies to self-tissue, not strep. Right? Cam K is elevated from inflammation due to infection....again, trying to understand this myself. What are your sons symptoms? Have they remained elevated (the symptoms) along with the high ASO? If symptoms are gone, who cares about ASO, in my opinion. Have you tried IVIG or steroids?? Who is your pandas doc?

Dedee---Can you tell me what all dr. murphy routinely tests for in her suspected PANS patients? Also, what is her normal course of treatment? Just curious. Thanks!

Got ped. to call in rx for dd7's sister. dd7 was positive for strep yesterday with no symptoms other than tics way worse for past 10 days. dd9 started tics and separation anxiety/emot. lability is through the roof this week. her rapid was negative yesterday. husband and i want her treated anyway. So ped. from yesterday is not in today. Ped. yesterday said he HATES zith. for strep and rx'd keflex. (he also talked to dr. latimer and said she hates it too for strep). Ped. today called in zithromax for dd9. Asked if they could change it to keflex....... Any thoughts????? So tired of being the one to use my brain. Would someone just figure this #$@* disease out and tell us what to do?!?!?! Wow, that felt good! Seriously, I know none of you are docs, but WWYD??

Had some initial tests run on one of my other kids who is having tics/ocd now, and off and on over the years. Not as bad as dd7, but enough to alarm me. Anyhow, got a call from ped. that all labs were "normal"--and based on the flags, they are. However, in looking at her M. pneumoniae Ab, IgG, S, her result is 1.21. Reference range is <=0.90. Why wasn't this flagged? And what does it mean anyways? Past infection? Are people who are testing for myco p. even having any respiratory symptoms?

Iowadawn...who is Dr. Karen Newell....what is her research and tx protocols?

dcmom---thanks again. I am afraid of clinda since I was put on that a few years ago for suspected cellulitis, lyme, or who knows what in one of my fingers.....and I had major diarrhea within a day of starting it. I know it is associated with c-difficile, which my oldest daughter had at age 2, and almost died from. She had it repeatedly 3 times....very scary. Dr. L said at our last visit to get dd 7 (and 9) to ENT to have their tonsils out. Based on no documented strep. So I blew it off. Now I wonder if she hasn't had it all along......I mean, no symptoms!! How would one know if it weren't for the tics.....and even then, especially when they always tic!

okay---what's the best test for bartonella? can they have only bartonella and NOT lyme??

Well, I can't flipping believe it. Some on here won't believe it when I say it, but dd7 has never had but one throat culture during this whole thing. One rapid, negative. Titers normal. Did one month of Augmentin. Got worse--this was last November. Been on 100 mg Zith. ever since December. Still ticcing, mild ocd...not as severe as it was when it started last summer, but still..... About 2 weeks ago, dd9 started ticcing....just one or two tics, but ticcing. About 10 days ago, dd7 (my Pitand child) tics got worse than they have been. always has at least a dozen going on, but not super obvious all the time. Well, 10 days ago, she started to tic almost nonstop....nose and eyes. I think I was becoming debilitated myself just watching. My husband, who has been rather blasee about all of this, finally said "we need to rule some things out." Dd7 woke up last night (like she used to do all the time) with terror in her eyes, screaming. Husband said "get a strep test.....lets just start crossing things off the list." I thought "Please....honestly.....she has NO SYMPTOMS!!!! NO FEVER, NO SORE THROAT, NO STOMACH ACHE, NO HEADACHE (stuff dd9 complains about ALL THE TIME!!). Plus she seemed to be PITAND, with this all getting really bad after a one-day high fever, impetigo (staph), no titers, etc..." Took her to new ped. this afternoon. That nursed swabbed the #$@% out of her ( I told her to get it good). She said she did a double swipe of each tonsil. I knew it would be negative. Doc came in......rapid was POSITIVE!!! How flipping many times, or how long, could she have had strep??????? I feel horrible. Our pandas doc knew she'd never had a full culture. I knew that. Why didn't I do it sooner? I have to be realistic that this could very well NOT be the golden egg I am looking for...... Ped. put her on Keflex......1.5 teaspoons twice a day (250/5ml) for 10 days. Dd7 is almost 50 pounds. How does this dose sound? Do I scrap the 100 mg zithromax (obviously didn't keep the strep away....the strep that I wasn't even worried about since we were pitand)...sigh. Thanks for input.

dcmom---THANK YOU!!!! That post helped me immensely. I do believe I am suffering more than my daughter (at this point, at least....she's only 7 so tics and weird movements are intriguing and cute to others at this stage....probably not so as a teen!). But in figuring out what to do next, while she remains in a CHRONIC state (or elevated baseline), I believe we are wasting precious time sometimes. Just knowing the sooner you treat, the easier/better, right? And other than abx, what else is there really? IVIG, PEX or steroids. So why wait another year? I would love to hear who the smart lyme doc who is more conservative than many llmd's is....sounds like exactly what I am looking for!!! YOu can PM me. Also, I am getting ready to post a shocker....coming after I post this.

I hesitate to ask here, and no offense, but I don't want just the token "yes"---I seriously want to know if Lyme or co-infections can cause numerous tics, ocd, adhd, decline in drawing....basically pandas symptoms??? No pain, fatigue, etc.

dcmom...can you elaborate on "aggressive management?"

Thenmama...who is your DAN!? WE live in VA too....may want to rule out some things...

Does IVIG work if it's not "recent onset?" I thought I read somewhere from Swedo that it is most effective if used in the first episode. So I wonder where that leaves us "chronic" pans/pandas/pitand kids? beesknees....I am curious why you saw Dr. B if your CHOP doctor was already offering IVIG? Also, who ordered all the other tests for lyme, bartonella, etc??? Sorry for all the questions....my dd7 went from chronic to really nonstop tics again in the past week, and another sibling is ticcing and some ocd...and I"m ready to die. And we are NOT clear cut strep, which makes it difficult.

Can you tell me what other digging dr. b is doing for underlying illnesses? Also, what does he mean by "it may be too late?" I think we might be in that category. One month of augmentin last november (after 8 months of symptoms prior) made things worse, then low doze zithromax since last december.....she is still ticcing away. But not debilitated. But "too late"---well, then what???

Wow--how did you figure that out?? But in a twisted sort of way, isn't it a relief to actually find something definitive you can fix!?!?! How is your son doing? I've heard ivig doesn't do much to help tics....have you seen any improvement there? How long had he had tics?

I know many of you will probably read this and think "Holy cow, she's still chewing that cud!" Well, I am. DD7 started tics last March, just 2 or 3. Looking back, it was after suspected walking pneumonia (myco p was negative 6 months later when checked). She did take an abx for it though in March. Wondering now if that was the start of a herx? Doubt it though...that really was just an aside. So in June, high fever (not strep), then within a week, head to toe tics, sep. anxiety, etc. Had mild ocd from time she was around 5 (germ stuff, and clothing issues). Cam K was high, anti d1 and lyso were high. We see Dr. L. Tried a month of Augmentin. Not better...maybe even worse. Switched to low doze zithromax in December...and here we are. STill ticcing. Sep. anxiety is a bit better. Germ stuff a bit better, but now does "evening up/tapping." Tics morph from one thing to another. Thought maybe there were a few months with lesser frequency and number...maybe?? But Dr. L does not see her as "severe" enough for IVIG. Haven't tried steroids...scared of making her worse, as I've heard with some kids with tics. Also, the effects seem to be temporary. A couple weeks ago, my dd9 started doing a bunch of eyebrow/eye tic stuff. She's had occasional throat clearing over the years, and some severe separation anxiety, and also touches me and other things with both hands, etc. Then a few days after dd9 starting, my dd7 has now had almost NONSTOP eye and nose scrunching tics, with some mouth stuff, and her hand/arm stuff. It is killing me. Makes me so sad. I also notice that when she is watching TV tics are soooooo much worse. Anyone know why? So here we sit, doing nothing. And I'm freaking out, trying to figure out why all of a sudden she is nonstop ticcing. Is it some source of inflammation? INfection? ( I did take dd9 in for myco p and strep culture and titers when she started a couple weeks ago, and all were negative). I just don't know anymore. HOw do you keep from running on the hamster wheel all the time? Especially when you are PITAND? Keep testing for infections over and over? Try to find sources of inflammation? See an allergist? An LLMD? Look at gut stuff? IT's all so overwhelming. Press for IVIG? I just don't see it being the magic bullet, especially for tics? Also, from what I understand from Swedo, it's most effective if used early and for initial onset. Why would she go nuts with tics all of a sudden? Well, she never really stopped ticcing in any way, shape or form, but what the heck? For us, it's never easy, like just strep. WEll, thanks for listening....any thoughts ...sorry for being a broken record.

I know many of you will probably read this and think "Holy cow, she's still chewing that cud!" Well, I am. DD7 started tics last March, just 2 or 3. Looking back, it was after suspected walking pneumonia (myco p was negative 6 months later when checked). She did take an abx for it though in March. Wondering now if that was the start of a herx? Doubt it though...that really was just an aside. So in June, high fever (not strep), then within a week, head to toe tics, sep. anxiety, etc. Had mild ocd from time she was around 5 (germ stuff, and clothing issues). Cam K was high, anti d1 and lyso were high. We see Dr. L. Tried a month of Augmentin. Not better...maybe even worse. Switched to low doze zithromax in December...and here we are. STill ticcing. Sep. anxiety is a bit better. Germ stuff a bit better, but now does "evening up/tapping." Tics morph from one thing to another. Thought maybe there were a few months with lesser frequency and number...maybe?? But Dr. L does not see her as "severe" enough for IVIG. Haven't tried steroids...scared of making her worse, as I've heard with some kids with tics. Also, the effects seem to be temporary. A couple weeks ago, my dd9 started doing a bunch of eyebrow/eye tic stuff. She's had occasional throat clearing over the years, and some severe separation anxiety, and also touches me and other things with both hands, etc. Then a few days after dd9 starting, my dd7 has now had almost NONSTOP eye and nose scrunching tics, with some mouth stuff, and her hand/arm stuff. It is killing me. Makes me so sad. I also notice that when she is watching TV tics are soooooo much worse. Anyone know why? So here we sit, doing nothing. And I'm freaking out, trying to figure out why all of a sudden she is nonstop ticcing. Is it some source of inflammation? INfection? ( I did take dd9 in for myco p and strep culture and titers when she started a couple weeks ago, and all were negative). I just don't know anymore. HOw do you keep from running on the hamster wheel all the time? Especially when you are PITAND? Keep testing for infections over and over? Try to find sources of inflammation? See an allergist? An LLMD? Look at gut stuff? IT's all so overwhelming. Press for IVIG? I just don't see it being the magic bullet, especially for tics? Also, from what I understand from Swedo, it's most effective if used early and for initial onset. Why would she go nuts with tics all of a sudden? Well, she never really stopped ticcing in any way, shape or form, but what the heck? For us, it's never easy, like just strep. WEll, thanks for listening....any thoughts ...sorry for being a broken record.

I could have written your post. Right there with you. The sad part is that my dd7 (my baby of 4 kids) was like my little buddy until this started over a year ago. She was always around, and I loved having her right by my side. Nothing made me happier. Now, it causes me to have major anxiety to see her tics and compulsions....mainly tics...to the point that i don't even want to be around her. Same thing, get anxious, angry, etc. IT is on my mind 24/7. And when I am around her, I am watching constantly. My husband, on the other hand, just lets it roll off him like water off a ducks back. Pandas 16, how do you get D8/17 marker tested?

Hi Kari- What is the password? It's asking for a password provided from the think pandas group? Also, anyone know if there will be links to talks from the conference?

Will there be a way to listen to the talks by Dr. Latimer, Swedo, Cunningham and Murphy? I would even purchase if on MP3 or CD.

I don't think I have the answer, but can SO relate. My dd7 is not "rational" at the dentist. You can't reason with ocd fears. She has an intense fear of wiggly teeth. When the dentist is checking her teeth and says "Ooooh, you have a nice wiggly tooth in there. Keep wiggling it and it will be out in a day"----well, they look at your child like they have three heads when the child freaks out from this. Then they try to reason with them. Bottom line, I think the best way for us is when I just try to keep chatting with the dentist, and focus her attention on talking to me (ie., distract them) so they don't set off anything.....and also to try to intercept/reiterate certain things the dentist says/starts to say to try to speak your child's own language. I know this doesn't help, but I can totally relate!

Sorry to sound ignorant, but what is this type of therapy? also, were you treated for the IgM 23 positive? Another of my kids started having tics (already has touching/tapping issues) and tested positive to band 23 igm....they said "not lyme"

S&S---your sig line sounds like my dd7. camk 168. high antineuronals. chronic unchecked. did IVIG help at all? do you have tics too (not just ocd)? wonder what llmd you will see. will keep you posted.

Well, we got back from the beach last wednesday night. my dd9, who is not diagnosed pandas, but who has had periods of throat clearing over the years, as well as headaches, and some evening/touching ocd over the past number of months, started doing a lot of eye blinking, stretching, scrunching on thursday. very frequent. and i feel like i could die. we still don't have dd7 free of tics and mild ocd after 7 months on low dose zith. at this point, it's as if we are just accepting a lifestyle of tourettes, even though cam k was 168 and 2 of 4 antineuronals were very high. But now dd9? funny how i'm freaking out over throat clearing and eye tics, while i let dd7 have a couple tics for many, many months and blew it off as a phase like my oldest had many years ago, until the fever then overnight onset of over a dozen tics, sep. anx, ocd, etc.... So here we go. dd7 had no high titers....probably untreated strep for years, but not at time of sudden deterioration. but now with dd9, I don't want to wait. heading to new ped. to see if he'll do titers....just in case i finally have a cookie-cutter pandas case here (not likely, as we have resolved to calling dd7 pitand). just sick about this. and my husband still thinks it's all just a phase that will pass. also, we did talk old ped. into labcorp western blot, and IgM Band 23 was positive. which is CDC negative. So I am pasting what I posted on the Lyme forum below, in case anyone here can chime in. seeing new ped at 2:15 today. hoping for titers. i do have an igenex kit and doubt he'd do it, but might see if he'll do w. blot. what about co-infections? i hear many don't use igenex for that? here is Lyme post: "I have been on pandas forum for dd7 for over a year. She still has tics, and some ocd, after a year of sudden onset, which was preceeded by minor symptoms. On low dose zith. for 7 months. Had only w.blot igenex. was "negative" but still had some + bands. pandas doc said "move on. not lyme" last week another of my kids, who has had some off and on throat clearing, sep anx and ocd over the years, started with major eye blinking, stretching, scrunching tics last thursday. she had been doing some evening up/touching stuff for a few months. and my son is doing the touching too. all 3 of them get tick bites over the years. my oldest has had less tick bites...she is kid #4, who had a year of one major tic that resolved. the latest child with issues has also complained of headaches off and on for over 3 years, and occasionally her chest hurts, throat, etc. finally convinced ped. to run w.blot, and only IgM Band 23 was positive (Labcorp). I am NOT one to be on the extreme end of treating Lyme without some sort of positive testing. I know, I know, it's clinical. But I do feel that some kids are being treated/overtreated with major drugs without ONLY a clinical diagnosis. And with Lyme symptoms mirroring so many other things, I hate to say, I'm not comfortable with that. I also know that there may be times when a kid was bitten years ago an untreated, and that regular Infectious Disease docs ONLY follow CDC guidelines, and don't believe in Igenex. So I am looking for any recommendations for a ped. Lyme specialist who is middle-of-the-road. I have only heard of Dr. Levin in Falls church, VA and Dr. Beals/Debbie McCabe in D.C., and I am not totally comfortable with either of those options. Are there any other docs who are medically based (not over the top integravite/holisitic) anyone can recommend? I live in Warrenton, VA, so VA/MD/DC is within drive for us." Thanks.