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All of my kids LOVE yogurt. I can't seem to find any that don't contain the S.Thermophilus in it. I have even called Yoplait because it doesn't have it listed on the label so I thought maybe that brand was clear, and they said ALL of their yogurts have it in there. Someone I spoke to at the grocery store said it was ALL commercially prepared cheeses and yogurts I am not sure if it's a trigger for my kids, but we are in a rough spot again, and I just can't take any chances. Thanks!

Thanks soooooo much for all of the info and support! As I am reading up on Bartonella, I seem to remember my son having a wierd rash on his back, about the size of my hand recently. It was stripy and speckly, if that makes any sense. It was towards the end of his last abx, which was azith. I am going to do the Igenex test tomorrow. I just think it's so weird that my son was doing ok before the abx. It was my daughter that was in bad shape. Dr. T just wanted to make sure he and my daughter weren't passing anything back and forth. Now, my daughter is about the same, and my son is much worse. He is now having rages(didn't start until after azith), severe soreness in legs, today was the worst I've seen so far with him.

First, I have to say sorry if this is all rambling on. I am trying to get what's in my brain into the computer, while my kids are all going a little crazy and playing in the pool I have two PANDAS kids. Both diagnosed with initial onset of strep (positive swabs/cultures) about 5 months ago. DD6's symptoms started slowly .. separation anxiety/ocd/then eventually rages When she is on abx. she gets better within a few days. Once she's off her symptoms slowly ramp up again. DS7's symptoms started quick. Within 12hrs of feeling "streppy" (vomiting,sore thr. etc) he has hallucinations, hears voices. Once starting abx they subside w/in 12-24hrs. Then he hears voices, has "the feeling", bedwetting,moody, and is sore. It starts as everyday, then slowly fades away over a course of a 3-4 weeks. The only thing that seems to stick is bedwetting (every few nights), and extreme soreness at times. He has had the soreness for at least a year, sometimes so bad that he cant walk. He has only had all of the other PANDAS symptoms since Jan.2011. I have always thought that it was something other than growing pains.....which is what our ped. always said it was. He did have a tick on him, and it was pulled off....but, it was on him overnight. And pretty attatched. We have seen Dr.K in chicago for PANDAS, who said no lyme....no need to even check w/out the rash. We have spoken to Dr. T in NJ, he ran a bunch of tests, all neg. The Western Blot was one of them...all negative. Dr. K has recommended IVIG asap for both. Says summer is the best time to do it. I just don't know what to do. I would really hate to do IVIG and then find out lyme later. Does any of it sound lyme-ish to you? I just feel like I need to rule it out, but don't know exactly how to do it. Or, when to just let it go. I have the Igenex kit (for my DS7), and plans to send it to Dr. P in Elgin/Iowa (on a side note, if anyone has any info on him, or other IL LLMD's please PM me). But my husband is not thinking this route at all. And it's so much money for the consult, and the test. It's driving us crazy that all of the doc's we want to see don't take insurance. I am also considering going to Denver and seeing Dr. N. Again, my husband is thinking we are already spending so much, he's not sure what he can do for us, that someone here can't. But, I can't seem to find an ART practitioner in Il, and the Klinghardt academy told me they aren't doing referrals right now. On one hand I am thinking lets just do this...the IVIG...and try to nip it early on and see how it goes. On the other, I am thinking of slowing it down, and trying some other tests, and possibly homeopothy (which my husband thinks is rediculous). I have no idea which way to go with all of this. I know it's expensive now, but may save us so much time and energy in the future. I would LOVE to hear your thoughts, and advice. What is worth doing, worth the travel, time, and money. I feel like I am drowning in all of this, and my kids seem to be getting worse. Thanks!

My DD6 started with her PANDAS symptoms in early March, after having strep twice (confirmed cultures). Our ped. was able to diagnose it right away. Her symptoms are all rage/ocd. She has been on 4 rounds of abx. since then. It goes like this...rages/ocd are bad, goes on abx....within 3/4 days on abx. the symptoms subside, and are gone by the end of abx. Then, as soon as shes off they start to ramp up again slowly. Starts withing 24/48hrs off of abx. When it gets bad (usually about 2 weeks later), she's on abx again. Her ped. was thinking maybe it wasn't cleared, so tried a few kinds. She has been on the 4 rounds I mentioned, 10 days for each one. Ammox 1st, Keflex, Clindamycin, last was Augmentin. My ped. is thinking maybe she has some yeast issues.....due to the rages? How do I know what is causing what. I would think that since the symptoms disappear while on abx, that it's the PANDAS causing the rages...not really yeast. But thought that since she has been on so many abx. that maybe some yeast treatments might be worth at try. She has no other yeast symptoms that I know of. We were doing florastor while on abx. and now back to our old probiotics. Ped. suggested Diflucan? Thanks!

Hi Melanie, I wish there was something I could do! So I am sending you hugs and happy vibes...hoping this will at least pass quickly. Hang in there Holly

My DD6 is being considered for the NIMH clinical trial. Everything was sounding ok until they told me about the spinal. That part is just totally freaking me out! I don't know anyone who has a child that has had one. I just can't imagine my daughter lying still, and getting it done. We would love to be able to participate...I'm ok with the travel and everything else, but not sure if I can get on board with a spinal. Does anyone have any experience with this, or have children that have had it done? Also, does anyone know the risks/side effects? Thanks!

Hi Sharon, My son was on abx. (he also had a cough besides his PANDAS symptoms) and they seemed to have worked for him at the moment. He was on azithromycin/10days only which he started on Apr.25th. His symptoms have really faded away to just some slight anxiety right now. My daughter is on Clindamycin/10days (no physical symptoms this time, just PANDAS stuff), and we are only 5 days into that. I think her symptoms *might* be improving. But not sure what's going to happen after that. My ped. just thought maybe there was some strep or something still lingering since she was getting worse (OCD, rages, etc.) and not better since her last round of abx. after a strep infection. Our ped. doesn't do prophalactic abx. so I was happy to just get either of them on anything. I was hoping that the abx. would clear everything and we wouldn't have to do either for a while. Dr. K is thinking that they'll be good for the summer, but as soon as school starts everything will ramp back up again. He reccomended IVIG, and said now would be a good time. We are also consulting with Dr. T in NJ. I have been trying to decide which path would be best for us. Still not sure, I change my mind almost daily. I am not too far from you.....I will send you a PM.

Hi Sharon, I am pretty new to this too and cant wait to see the responses. I was actually just going to post a similar question. We also see Dr. K, and he has reccomended IVIG for my son(7), and probably for my daughter(6) too. The are both presenting so different, that my daughter might be the one that needs it first as she seems to be getting worse. And my son seems to get better on abx and stay ok for a while. Right now we are just trying to rule out any other underlying infections to help us decide if IVIG is the way to go. But what I did want to tell you was that I spoke to the people doing the screening for the NIMH clinical trial. My son doesn't qualify, he presents with mostly hallucinations, voices, then anxiety. But my daughter is all moods/anxiety/ocd and seems to be a good candidate. I spoke to someone who screens for the study, and she passed the first two over the phone screenings. Right now we are in the process of getting all of the medical records to them, so they can go over them all and let us know if we can proceed. I am not sure if he would be able to participate though since he had steroids already....I would call them with any questions though, they are super nice. But here's what I know about the study so far: they will pay for all of the travel, and the stay for both parents and child. it is a one week stay (Bethesda, MD) blood work before and after an MRI a spinal 2 days for IVIG and several interviews, before and after Regardless of whether you have the placebo or IVIG, you will be able to do the real IVIG 6 months after the first trip. The child is also put on 6months of abx after the IVIG This forum is wonderful. I am sure you will get some good feedback. I will be checking all of the responses, and trying to figure out what to do too Holly

Oh my gosh, I just saw this post I just started a post about how it was going, and if anyone was doing it. Thats great to hear!

I was just curious if anyone is doing, or have done the clinical trial. I am interested to hear how it went, what the experience was like......and definatly how the child is doing. Right now we are mulling over all of our options. I have two PANDAS kids, and we are pretty new to it all. We just saw Dr. K, and he recommended IVIG (sooner than later) due to thier symptoms. Also, stating that it's a good time of year--no school for 3 months--to get it done. My husband wants to dive right in to IVIG (he has some great points), but I on the other hand feel like I am being rushed and want to really check things out (abx treatment, lyme, etc). I have a consult with Dr. T tomorrow, so I will be asking for his thoughts also. Anyway....we are trying to figure all of this out, but I figured if we did go the IVIG route, it would be great to do the trial so that they(NIMH) can learn along the way. Also, not sure how much (if any) my insurance will be paying.

I did ask them to check for Mycoplasma. But now that I think of it, I didn't see it on the copy of the lab report that they sent me. I will have to call in tomorrow and ask again. When I brought it up the Dr. that I saw at the time of the blood dray..(not my normal ped.)she just kind of brushed it off, but did say that they would test for it. It would make more sense, because it was more of a cough, than a streppy situation.

My ped. did end up ordering abx. for my DD. But, it was a 5 day zithromax. I do really love my ped......so I am going to get her some info, and go in for another talk with her....and go over some options. My apt. with Dr. Shulman isn't until the May25th (although, I'm not sure we will even go), so I think that gives me some time to get every strep test poss. for my kiddos. There has got to be strep somewhere. They are getting sick, after 24hrs of their PANDAS symptoms starting. Cough, not feeling good etc. I just can't believe they are not testing pos. So, we'll try for blood tests, and gut. I'm not sure we're ready for proph. abx. But, I want to be able to get them on something when symptoms flare. What's crazy, is just when I think we have a handle on things....it all goes insane again.

My pediatrician is referring us to Childrens Memorial....Dr. Shulman in Chicago for my DS7, and DD6 PANDAS. I think to an infectious disease specialist/and or immunologist.....she said they actually specialize in strep. My daughter is having a symptom flare, but not showing positive on the rapid, and I would assume the culture. So, she is hesitant to prescribe abx. Although, this afternoon she's feeling sick, with a cough. She wants things to buble up a bit, so that Childrens can see exactly what's going on. Has anyone been there? .... Or have thier ped. do the same? Of course, I just want it to stop. I want the abx. This will be the third time she has had strep in 2 months. So, I don't know if it's ever even gone away completly. She said that if they can't get in tomorrow, then she will prescribe zithromax for her in the morning. But I just can't stand that she is having to go through this. AGH! Edit...I just saw on previous posts that this Dr. Shulman doesn't believe PANDAS exists! WHAT!?!? Has anyone seen him?

Thank you so much for all of your advice/input! This is the first time in a while that I have had some quiet time to respond...it's 12:28am and everyone is alseep We have had a rough couple of weeks. I have been so worried about my ds7, and my posts have been regarding him, but we have figured out that my dd6 is most likely PANDAS as well. I have decided to test for Lyme. I think we just have to rule it out, especially since he had the tick on him for a while. So...I will update on the results when they come in. Thanks again for taking the time to share. I really don't know what I would do without everyone here. I don't post all that often, but I am constantly reading and trying to take everything in. It is such a great thing that we can all learn from each other. I can't imagine what it would be like for us without the internet! Hope everyone has a nice Easter Sunday

My son has gotten a flu bug.......I think. I have some questions.... He was just cultured for strep Wed.-- came back negative. But a day later came down with a flu bug....similar to what his sister had last week(lasted for about 4 days). Vomiting, aches and pains. BUT....he is hallucinating, and hearing things. The only time this has ever happened was the 2 times he had a strep infection. When he had strep he was put on antibiotics and the hallucinations went away w/in 24hrs, but still heard voices for a few weeks, then they completly went away. It has been about 2 months since his strep infections, and he has been cultured and blood tested a few times and he was clear. So....I am not sure if the flu bug is bringing out his PANDAS symptoms, -or- he still has underlying strep infection (not showing up in culture), and now has the bug on top of that. He was also supposed to start a steroid burst per Dr. K's instructions to help dx his PANDAS this week. Should I still do the steroid burst now? or-wait until he is well, then do the burst. I have sent him an email, but not gotten a response. And of course I am freaking out, because he's never had the hallucinations for more than 1 day, now it's going on 3 days. I feel so bad for him......and I am just so sick about it all Any advice/input would be soooooooo appreciated! Thanks so much

The ART sounds like something I would love to look into more. Where do I even start to try to find a ART practitioner. I am Illinois (Western Suburbs of Chicago) Thanks!

My DS7 son was diagnosed PANDAS earlier this year. He had a tick in his scalp last (for about 12-15 hrs) last fall. During my visit with Dr.K I asked about getting my son tested for Lyme, and he asked if there was a rash at the bite spot. There was not, but it was on his scalp.....so I'm not sure if I would've even seen it. My thought was why not rule that out since we had to go in for a blood work up anyway. But Dr.K said no need. Do you think I should push for the test? How would I know if there's any Lyme involment if we don't test?

My ped. has only seen 4 cases of PANDAS in her practice .. my DS7 being her fourth. I don't think any of the others are siblings. But she has been great with him, and she is really willing to work with us, and learn along with us. I just took my son to see Dr.K last week, so I am going to email him about my daughter as well. This is all just blowing my mind! I feel like I am just getting a grasp on my son and what we need to do for him, and now adding my daughter to the mix is so crazy. Thanks for all of the help

My DS7 was just diagnosed with PANDAS in Feb.11. He got strep, and within 12hrs started his PANDAS symptoms. His symptoms are severe axiety, hallucinations, and auditory issues/OCD. Our ped. was great and was able to diagnose right away. He has had strep 2x since then, and almost all symptoms go with the abx. I had started a log in Feb, as soon as my DS7's strep started to try to keep track his symptoms. I also started to keep track of my other two kids DS4, and DD6. During this time my daughter (6yrs) has also gotten strep 2x. During the first time she had a couple rage episodes that seemed weird enough to me at the time to log them. One in particular she was on the floor crying, almost convulsing...curling up in a ball and then straightening out and saying she felt like she was dying. She is now on abx for strep again (she got it again 3wks after last time), and has been having some rage issues again. They are almost always at night between 5pm-10pm. Last night she said she felt so crazy weird/angry and didnt have any reason for it. There wasn't really anything that set her off, she just was angry. She said she wanted to kick, scream, punch, rip her curtains to shreds, and that she felt like she was going to die. She seemed really scared by how she was feeling. She has never had strep (that I know of) before these two times. And with each time she presented with normal strep syptoms..sore throat, fever, not feeling well. Each time she started abx within 24hrs of feeling streppy. So......my question is does this seem like PANDAS issues to you? The symptoms are so different from my son, but they are also such a sudden onset. And for parents of multiple kids with PANDAS, do they normally present with same sypmtoms, or is each child different? She is a really sweet, and loveing child. She has never been voilent. She has been moody, angry normal stuff in the past, but NEVER like this. What seems really strange is how she explains it. I've never heard her even talk like this. It just comes over her, and she describes things so graphically.....the angry thoughts. I have made an apt. with her pediatrician. But I feel like I learn sooooooooo much here, that I would post to get some point of views from the forum. Thanks for taking the time to read this......I don't know what I would do without this place!

We are seeing Dr.K tomorrow. When I made the apt. she said it would be an hour long apt. Just wanted to know what to expect. That seems long, but I am so glad that he wants to take time with my son. So many doctors are in and out in a flash. Will they draw blood? My son FREAKS out with needles, so I just thought it would help to be prepared Any help/info would be great! Thanks!

I have heard some good reviews about Tranquil Sleep. It has 5-htp, Suntheanine & Melatonin. I take it and LOVE it. We were using Benadryl when his night time anxiety would flare up. But I just recently read about a few moms giving it to thier kids, and it working really well. So I think we are going to try it next time the night time anxiety flares, and just adjust the dose for him

I have a child with PANDAS and also suspect Lyme. I am looking for a good Dr. in the Chicago area that treats Lyme. Any help would be great....Thanks!

Hi~I am pretty new to the PANDAS, and have a few questions. Here's the scoop on my son so far.... My DS7 was recently diagnosed in Jan. with PANDAS. His first episode started right when he got sick with strep for the fist time. Hallucinating, hearing things, and extreme anxiety (besides the "normal" strep symptoms..sore throat, vomiting, fever etc.). The Hallucinations stopped withing 24hrs of starting abx, but he continued to hear things (loud voices yelling in his ears) and have the anxiety...mostly at night. This lasted for about 2-3 weeks, then he returned to normal. He got strep again three weeks after that. And the 2nd episode was almost exactly the same as the first, in severety and duration. My pediatrician (who diagnosed PANDAS right away) said that this would be just how he would be with strep, but couldn't tell me if it would be just when he was sick, these same symptoms, or how it would really play out. We also started him on an anti-inflamitory diet 3 weeks ago. I am now starting to see some severe anxiety/anger at about 5pm for the past few nights. He just gets really scared/sad/angry crying and says he just doesn't know what to do, or why he feels like that. It breaks my heart to see him so sad. It has been about 6-8 weeks since his last strep. illness. So, I don't know if this is still lingering from the last episode, or something starting. He was swabbed about 1.5 weeks ago (culture) and came back neg. Also, his past bloodwork came back clean for strep, and his titers were not really out of range. I guess my questions so far are to see how it progressed/started for other children with a similar pattern as my son. I know everyone is so different, but I'm just trying to prepare and learn as much as I can from others experiences. He is not on long term abx.....should he be? He was only on for 10days each time he had strep. Could he be reacting now to a virus/other bacterial stuff? He is also sore in his elbows/legs so often. That has been for a year or so. Is that a PANDAS thing, or a Lyme thing? He did have a tick last year that was on him overnight...it was deep in his scalp, and already burrowing but I got it out. I suggested a Lyme test to my ped., but she said Lyme is so rare here(Illinois), that unless I pushed for it, she would not worry about it. Should he be tested for Lyme? Right now I feel like I want to test him for almost anything/everything. Thanks so much in advance for sharing and any info! I feel like I have read so much out there (trying not to freak out), but am learning the most from others who have gone through it, or going through it now.

First of all, I have to say this site has been wonderful for me! So thank you in advance for taking the time to read this and help My son-7 was just diagnosed with PANDAS in Jan. I am also suspecting Lyme. My Ped. is awesome, but doesn't really have to much experience with either, so I thought I would check with the site to see if anyone can steer me in the right direction. I was going to post this in the Lyme section, but was hoping that I could find someone who's seen a LLMD, that might also be familiar with PANDAS. We are in the Chicagoland area, but are willing to travel to find someone knowlegable. Thanks again!