eljomom

I am very unsettled after our apt. with Dr. Latimer. I posted how it went, that she seemed very pandas-dx while going over daughter's history, etc. Then after seeing her, and how calm she sat in her office (well, her wingman--8 year old sis--was right next to her, and she was so anxious that she seemed calm) and no tics. Then she said---think it's probably a tourette's disorder---after talking about testing the dog, etc. We are running Igenix....and waiting another 2 weeks. I just read the article someone posted by Leckman, Murphy and one other....and really would like to try abx...I think. Here's the thing---how can the cunningham being 168 NOT be pandas???? Plus she has symptoms---so Cunningham would still be high if PITANDS too, right?? What i guess I don't understand is WHAT MAKES CUNNINGHAM HIGH??? Is there an abx to start that would help if it is Lyme in the meantime??

which igenix tests did you do? latimer ordered basic lyme panel and cd57

Hi Kim, Thanks:) Who did your Lyme testing? Was it Igenix? WE didn't test for co-infections yet...she said to wait. So who diagnosed her as pandas??? Does't sound like your daughter was "severe" sudden, so wonder who dx'd. Also what has your treatment been?

Hi there, I'm going to post to the group....but in a nutshell: Saw Dr. L today---she is wonderful!! I've never been to a doctor who doesn't rush you AT ALL! Truly listens. The whole time, she was asking questions, taking notes, seemingly attributing things to PANDAS....talking about having our dog treated for strep, etc. She said Tourette's generally doesn't onset like this. Then she checked out my daughter, had her write her name, draw a butterfly, and checked her movements. She said she saw no chorea, her handwriting and drawing was good, so now not convinced it's pandas, but more leaning towards a tourette's tic disorder with ocd. She asked if anybody tried her on antibiotics for a month or two. I said no, but didn't think to tell her that Dr. T offered. Got her Cunningham test back today too. It was 168. She said she's more interested in the antineuronal antibodies. She also wants us to do Igenex for Lyme, since her p41 IgG and IgM were elevated to rule that out. NO antibiotics. So, we will wait for those results, probably another 2 weeks. I do have a few more questions and a couple things I forgot to tell her in her history---you always think of things after you leave. I didn't find out about this apt. until late yesterday, so I was scrambling to get everything together for today. Does she take e-mails from patients??

Karen---can you tell me what she says about "what is WRONG with her"--gosh I don't like that wording:( How old is your daughter?? thanks, wendy

I posted on the pandas forum, but then thought that people on this forum might understand this better. We are going to see Dr. Latimer tomorrow, and I"m freaking out (surprise, surprise) about what affect this will have on my daughter. Up until this point, we have not made a big deal out of her tics---just call it extra energy. So she thinks they are "no big deal." Now we are taking her to a doctor, and to an almost 7 year old, that means "something's wrong", which will mean "my tics mean something is wrong if I have to see a doctor for them." I don't know how Dr. Latimer handles appt.s with the kids---does she talk about it all in front of them? Ask them questions? or just do a physical exam?? Any thoughts would be appreciated---maybe how to word it to her..thanks!

We are going to see Dr. Latimer tomorrow, and I"m freaking out (surprise, surprise) about what affect this will have on my daughter. Up until this point, we have not made a big deal out of her tics---just call it extra energy. So she thinks they are "no big deal." Now we are taking her to a doctor, and to an almost 7 year old, that means "something's wrong", which will mean "my tics mean something is wrong if I have to see a doctor for them." I don't know how Dr. Latimer handles appt.s with the kids---does she talk about it all in front of them? Ask them questions? or just do a physical exam?? Any thoughts would be appreciated.

Airial95---what abx are you on for your son?? Does he have tics? Cindy---wondering how your apt. went today? Did your son start suddenly? We had the ocd-ish for over a year, then a few tics, then a sudden downslide.....so I wouldn't call us a "classic" case really, which makes it hard.

IN my continued obsession with all the "data", I keep looking at my daughter's igg subclasses. Dr. T sends it in a spreadsheet, and puts her number and another number next to it. He says they are all "normal"---but looking at the numbers he gives, I'm not getting it. Here's her numbers--hers is first number, the "value" for i guess "normal" is in ( ). Also, she will be 7 in December. IgG 1 524 (518) IgG 2 196 (259) IgG 3 34 (43) IgG 4 26 (35) They all seem low to me, but i truly have no idea what i'm looking at. thanks

familyof5--thanks for the post. because of my ocd, I tend to go down so many rabbit-trails, and I am totally overwhelmed with which one to go down next. my latest is ruling out Lyme---even though western blot only showed p41. i just cant sit well with the sudden increase (without decrease) of tics.....3 to over a dozen in a couple weeks time???? What happened!?!?! wondering if you are doing a "pandas protocol" with your TS/ocd kids if you think it's immune??

sptcmom----can you elaborate on the "neuro side effects in some children"--that's what I"m intersted in...thanks.

Cindy--please keep mem posted! So you just consulted with Dr. T, right? I'm getting everyone confused...sorry!

Nicklemama, what are you doing to treat then...just abx???

Hello all, I've been posting on the pandas forum mostly, as i have a little one (almost 7) who has had some "ocd" tendencies for a year or so....can't touch her food, sip out of her cup, etc. as well as sensory issues with clothing. No big deal....we homeschool and we deal. This early spring, she started smelling her fingers, scrunching her nose, and rubbing her head with a finger. Again, no big deal...my oldest had transient tics for a while. I have 4 kids, and 3 of them even-up when they are scratching an itch or something. Anyhow, in JUne after a high fever, she started thrusting her jaw out, then within a couple weeks, shaking head, nodding head, stretching mouth, sticking tongue out, smelling things, flicking fingers (says she has to flick the germs off), kicking legs, opening eyes wide, flaring and scrunching nose. Separation anxiety is worse, and she's hyper. So we are trying the pandas route---but bloodwork has been "normal" thus far. My brother has Tourette's and ocd, and I believe I am suffering from it as well (the ocd). I believe I have a form of trichotillomania, as i too rub my fingers on my scalp till it feels just right, as well as pull hair (not to the point of balding, just a few throughout the day). I get obsessive ruminating thoughts, and my anxiety goes up. I am now feeling depressed, having a hard time getting out of bed, but waking up with major anxiety and ruminating. I go over an over things in my mind, research incessantly, write things down, etc. So I am having a hard time dealing with this, as the tics really, really, really stress me out an make me anxious. I had postpartum depression really bad after my last two pregnancies. It started with worrying about stuff and ruminating, then depression, anger, etc. Zoloft helped after my third. My fourth, I took Zoloft, but started at a high dose right away, and felt like I had had a ton of caffeine or major anxiety. When it got out of my system, I felt better (well, still depressed, but not like super-anxious). But with my fear-the-worst issues, every time I tried to take it, I would get major anxiety attacks. They put me on klonipin, made me stop nursing, switched to Celexa....it was bad. I wasn't eating, sleeping was hard because of worrying, etc. I took another drug for a few months to get me eating, sleeping and less depressed, then weaned off. Been on Celexa since (over 6 years). I think it has been okay for me, as I don't worry as much, unless there is something that 'gets me"---however, i had started to wean off the Celexa right when my daughter started having issues (bad idea). I was doing okay with it, but it's crept up on me, the obsessing, etc., and I've started to go back up on Celexa. But I don't feel it's been the "wonder drug" for me. I know I probably need some therapy of some sort, but does this sound like ocd to you?? Does major anxiety, ruminating and depression go along with it? ARe there any other drugs (weird I'm asking, because i sooooo hate drugs....was trying to wean off Celexa to try 5 HTP.....) that might get me off the "ledge" of obsessing here?? I am scared of the drug crapshoot, as often things are made worse, from my experience. Okay, I've bared my soul, and thanks for helping.

Clearly my ocd--or obsessive thinking--has got me in a death grip here. i am doubting and questioning and ruminating about everything here. But IF I try the zithromax and her tics get worse, then do I have to go the Lyme rabbit trail??

Yes, still waiting on the Cunningham test...hoping by next week. Nicklemama---did your child have confirmed strep? Mine doesn't even have that. PLus my brother has Tourette's. As for antibiotics, she's really a pretty happy little girl -- albeit hyper. We homeschool, so she's engaged and active with sibs. Yes, she will throw something if it's not to her liking, but I would not change her little personality one bit. It's the tics that are so bad, and the ocd, while not debilitating, is there.

I have been posting mostly on the pandas forum, but may soon be jumping ship over here. My daughter had some ocd for a few years, then started with a few tics this spring. in june after a high fever, developed over a dozen tics in a short period of time. Thus, investigating pandas. Bloodwork has been normal, strep would have been a while ago if it started this off. Anyhow, on the pandas forum, there had been mention of kids tics getting worse on zithromax, and i think biaxin. or getting better, then worse when they are stopped. the doc wants me to do a trial of zith. to see what happens, but i'm afraid of making things worse. she took zith. in march for pneumonia, but can't remember if she had already had the tics prior to that. so now i'm afraid to try the zithromax!!! just thought i'd ask on the TS forum, as it's looking more and more like this may be what we are dealing with here. Thanks,

Got bloodwork results from dr. T: 1. There is no evidence of strep infection or carriage, and she makes good antibodies to pneumococcal vaccine suggesting that she should show the titers if she were infected. 2. There is no evidence of mycoplasma infection or carriage .... 3. No evidence of Lyme 4. Her Immunoglobulin and IgG subclasses are normal, i.e. no evidence of immunodeficiency. 5. Ferritin and ceruloplasmin are normal. 6. Anti-pneumococcal antibody testing is normal. Now what??? Is it time to throw in the towel?? STill haven't talked w/dr. t, but in the e-mail, he said her clinical presentation is suggestive. But where is infection??? She seems to be in perfect health! No signs of past infection. No signs of current infection. Unless the strep was so long ago (like years, when the mild ocd first started), and it was a virus that kicked things in. But if this is the case, and she's healthy, shouldn't the tics be subsiding, not increasing???? There was a p41 on her western blot IGG and IGM, but I truly don't think that is a can of worms that needs to be opened. I think all the lyme advocates might jump on me for that, but I almost think i'm just reaching here with the pandas dx now. dr. t said we could try abx without knowing what we are treating, but now I'm afraid even zithromax might make tics worse? I think I've read about that happening, or also when people stop, it's worse than before. So if pandas is an "out of control" immune system, why are all her immune tests normal? What now.....?

Anyone know how to find a good Integrative Dr. in Virginia????

I have a Metametrix Kit here from a friend's nutritionist. It tests for 30 foods. I will see if they can increase the panel. Do you know what lab/test your doc used??

Thanks Chemar---I will look at that link. I guess I am wondering what are reliable labs to use, etc. too?

Just posted this on the TS forum, but thought I'd go down this rabbit trail in the wait time with getting labs, cunningham test, etc..... I am looking for any ways to help my daughter with her tics. I would like to look into allergy/food sensitivity testing. I know there are many ways to be tested out there. The allergy docs do skin testing, which I think only shows a "true allergy." As for food sensitivities, there are many things out there, and some I have heard are not reliable. I am wondering if anyone knows of what are considered to be the most accurate and reliable ways to test for food sensitivities?? I have a test kit from Metagenix, which does a finger prick and tests for 30 common allergens. It was sent to me by a friend's nutritionist. I did myself about a year ago and was "severe" for dairy, but nothing for wheat. But then I did Enterolab stool test, and was positive for gluten-sensitivity, and negative for dairy!!! I don't really have much faith in the muscle testing---I know some will swear by it, but for me, I won't totally rest with it. Thanks for any guidance.

I have been posting mainly on the pandas forum, but my daughter presented with mild ocd (germs, clothing issues) a year or so ago, then a few tics this spring after pneumonia, and after a high fever in june, went from 3 to well over a dozen tics, head to toe. Still waiting on labs, and apt. with pandas specialist, but at this time, I am looking for any ways to help my daughter with her tics. I would like to look into allergy/food sensitivity testing. I know there are many ways to be tested out there. The allergy docs do skin testing, which I think only shows a "true allergy." As for food sensitivities, there are many things out there, and some I have heard are not reliable. I am wondering if anyone knows of what are considered to be the most accurate and reliable ways to test for food sensitivities?? I have a test kit from Metagenix, which does a finger prick and tests for 30 common allergens. It was sent to me by a friend's nutritionist. I did myself about a year ago and was "severe" for dairy, but nothing for wheat. But then I did Enterolab stool test, and was positive for gluten-sensitivity, and negative for dairy!!! I don't really have much faith in the muscle testing---I know some will swear by it, but for me, I won't totally rest with it. Thanks for any guidance.

WEll, I had the labs drawn yesterday that Dr. T ordered. REgardless of the results, I believe that abx is the next thing to try here. He had said he would rx ,but haven't been able to get in touch with him:( My ped., who thinks it's only pandas if titers are elevated, did say that he wouldn't have a problem prescribing abx for a month to see what happens. So, it sounds like azith. has a broad spectrum, and since we "may" be dealing with myco p, as well as perhaps azith has immuno-modulating properties (if we can't find the source), then I think that's a good place to start. That being said, since Dr. T is not replying ( I sure hope I'll be able to get my test results back!), I want to ask my ped. but don't know what dose to try. Reminder, we had ocd (not severe) for a year or so, then a few tics this spring (which may be compulsions??), then fever in June (not strep), and within a week, explosion of tics, head to toe, separation anxiety, hyper. Would like to know what would be a month dosing course for my daughter, who will be 7 in December, and weighs about 45 pounds??? Thanks!

Thanks for all the feedback--I really appreciate it. Just really don't know what lies ahead, which is a scary place to be. If she is happy, generally, but ticcing head to toe most of the time, sometimes nonstop, then how happy can she really be? I can't imagine how she would survive in public school with her germaphobia either. How did she go from "normal-ish" to a full on Tourette's/ocd presentation in such short order? A "TS" doc will just tell you that "there's no NORMAL in TS, and it can start like that", and a pandas doc will tell you that it sounds like pandas. Keira--who did your IVIG? It sounds like you saw Latimer---why won't she give you antibiotics? Does she not do follow-up? Also, somebody wrote about steroids being a huge problem for TS and Lyme---yet Dr. T (a pandas-specialist who is a neuro and therefore would be a TS specialist too???) told me that there is no evidence of steroids increasing tics!! I have heard it time and again, that it's a big no-no to give TS kids steroids, so that is what really scares me in this whole treatment process. I know with pandas, they are likely necessary. This does not make me feel comfortable. Well, blood draw was done...so now it's the big wait. I am predicting that absolutely nothing will show up. I kind of want that, but kind of don't---you know what I mean?? Thanks again for the support here!