amy s

Hi lisa, It sounds like you are beginning to get somewhere. So good that you found the videos from before tics too. I had often wondered whether my child had tics or what that was that she was doing with her hands (besides her tremors that she had) and it ended up, I believe more of an OCD thing rather than tics. We did have a child psychiatrist to express the same opinion (that it was ocd related not a tic). I mean, I didn't even really know what a tic was at the time for sure. Hope things continue to improve!

OMG Lacy this sounds EXACTLY like PANDAS to me!!! Have you done a steroid burst??? That, for us, was the big diagnostic tool that made us realize it was PANDAS. This is the perfect time to try one because you have to do it during a symptom exacerbation to see any results. Do you have a doc to prescribe? Dr. K recommended to us to do the steroid burst 2 weeks after all antipsychotics and SSRI were discontinued. This sounds so much like my dd but things with my dd kept worsening until school wasn't possible and I couldn't work. What antibiotic is your dd on? Maybe it needs to be changed? Maybe it needs to be increased? I am so SO sorry you are going through this. It just breaks my heart to read this board sometimes. Please hang in there...deep breaths. Take care and let us know how it goes. (((hugs)))

oh gosh... As I was reading this I thought that, well...maybe that bit of the dose that he got will help...I'm hoping for you that it does!!!! That must have been so upsetting and scary with the reaction. I just can't imagine how you guys felt leaving there. How does your son feel today? What a mess with the docs not wanting to take responsibility as the ordering physician. I'm shocked that the ped neuro dumped you like that. In the medical field there is no way that Dr. K would be considered the ordering physician from that distance. I'm surprised the nurse even called him. Well, I will be thinking of you guys and hoping that what little dose he got will be what he needs. Have you changed antibiotics or are you still using the Augmentin? What about transfer factors? I haven't tried them yet - I have them in my fridge just in case- but if my dd gets sick again I think I will try them. I read a book "Transfer Factors and Immune system health" and you can get it at amazon. It was pretty convincing... even talks about pandas in it, among other autoimmune illnesses. We thought many times during my dd's IVIg that they were going to have to stop the infusion...but hers was due to rages. Many times we literally had to hold her down in the bed while the IVIg slowly dripped in because she was raging so bad. They wanted to send her to a 'higher level of care' but luckily our doc fought for her to stay. Hang in there and keep us posted on how your son is feeling.

Pat! This is wonderful news!! Keep us posted on the progress.

I just wanted to say that when I read this I cringed and I wanted to discourage this type of term usage when dealing with these pandas kids. One reason is that ANY child psychiatrist or child psychologist who hears a child (who is also otherwise acting psychotic) say something like this would JUMP on this statement regarding another 'being' in their head and this could lead to mis diagnosis. We had one heck of a time when my dd first started to see mental health department because the quality of my child's OCD was that she began saying (probably 1000s of times per day) that "mommy my head says that I want to kill you" She had to say this over and over and over and it was terrifying. HOWEVER she was completely upset by it all and did NOT want to kill me, etc etc. But apparently she had to say it to keep it from coming true. ANYWAY, the mental health people at first truly thought (because of the way she worded it as 'my head says') that she had schizophrenia--(she had JUST turned age 6) and this went on for a very long time, months of misdiagnosis. Everyone was worried that yes, she would try to kill me but I was not. Even though all ###### would break loose when she had a rage...those times were different than her OCD verbalizations (and she had MANY). She was questioned over and over again regarding hearing voices, hallucinations and such. But always answered that no it wasn't a different persons voice or someone else but rather it was in her own head and it was 'her'. This still stumped them. I don't know what to call it but we eventually came to call my dd's OCD thoughts as 'silly thoughts' (later she was able to just tell me 'mom, i had a silly thought' instead of the horrors of the sentence---) and she is now aware that her brain was being attacked by her own body's self defense system. I had to get that cleared up with her right away because the way she worded that 'my head says' bit was just way too much. I guess everyone can use what's best for their own kiddos situation. These poor kids...having thoughts and rages like this, who knows what kind of terminology would really help. Really, it's whatever each child finds comfort in. My child is only 7 right now but she does seem able to understand what has happen to her and I think she finds comfort in hearing a scientific explanation. I know I do! Worried dad- I just wanted to wish you good things for the upcoming second round of IVIg with Dr. K tomorrow and the next day. We'll all be thinking of you guys! Let this WORK and permanently!

We used Dr. K's protocol and dosing with my dd who was age 7 when she got IVIg.

Hi brown... You sound just like I felt many times since August 2007. My child is now better (3 months post IVIg) and YES she is back to her usual sweet and loving self. Homework? Forget that stuff right now. Your child is seriously ill and just do what you can do. Juggle the ways to keep as much peace in the home as possible because EVERYONE needs that right now. If they don't understand about homework SO WHAT. You are going through a personal trauma that few understand. PANDAS is horrible and it can ruin lives. Eventually because of everything (and debilitating OCD) you wrote about above our entire life changed....no more job for me, no more school for her, no going out for dinner and rarely could she even go grocery store shopping and birthday parties were OUT OF THE QUESTION. I lost all respect in the community from school personel and my coworkers and peers. There were times doctors tried to put her in mental institution for my safety...these docs we had dealt with had never seen anything like it and neither had I. I had already raised 2 children to college age and I knew that it wasn't a parenting issue and wasn't a behavioral problem but getting other people to know that was HARD. While dealing with some of these issues a child psychologist taught me a 'safety hold' which is basically a way to restrain my dd for safety of everyone involved. It helped. Basically it was a big hug which held her legs and arms still and all the while I would tell her that I was there for her and remind her that I was just keeping her safe and that I loved her with all my heart. Afterward (and ours would last up to 3-4 hours long at times, my poor dd would sob and feel so guilty and apologetic. Those times are so hard for us to think about because all the physical pains she gave us were 10 x compounded by the emotional pain we were experiencing by seeing her like that and hearing these things from her. And after the horrors of the things she said and did there literally were times that, once I knew she was safe, I just had to get away for a few minutes in my room by myself to allow myself to decompress so I could be there for the next time this happened. I was afraid that I was helping to 'create a child that is learning to manipulate' too. While I do feel that my child does try to get her way she does NOT try to do this with physical violence or abusive words ANY MORE. I can sympathize with you not getting support regarding this diagnosis. I am still down right angry about my personal situation regarding that and am working every day to try to get over it. But that is pretty fresh and personal to me and so I won't go into it. Don't even get me started on the people interjecting opinions or the people in the community who are CLUELESS. When I read your posts, my heart just breaks for some reason and I have a hard time responding. It really sounds like your dd has pandas to me. I don't know where you are with all this right now but if I was able to do it all over again I would not have waited to do a steroid burst and IVIg. We had some extenuating circumstances because we were so isolated living in Italy at the time and did eventually have to completely relocate to the states to find a doc to help us. We had horrible internet and constant power outtages because we lived in an italian farm villa so I could not research like I needed to...but if I knew now what I knew then I think things could have gotten under control with us before it got to the point that it did. I wish you the very best. I apologize for the random quality of this post, I know I was jumping around a lot. regards, amy s I just wanted to add one more thing. That while yes, I agree, normal parenting rules do NOT apply with a child in the throws of pandas symptoms, the community and society will not see it that way...and I don't know what the answer is. Be aware that your child could still get suspended from school for these behaviors, if they start happening there. The child could still have police involvement (this happened to us because of an issue which happened out of the blue when I came to pick my child up at daycare!) and social work services can get involved. You will be lucky to get any of these people to understand or believe that this isn't happening because of 'trouble in the home' or because the child has been allowed to behave this way. I hate to sound so negative here but that is what we have went through. I'm not sure but from what I've read it is likely that my child had a bit more intense rages than some others on here. I don't know what to advise except take care of yourself so you can be there for your child. And do everything you can to help her father and step father understand pandas. Understandably that could be instrumental in getting her eventual treatment.

Hi brown... You sound just like I felt many times since August 2007. My child is now better (3 months post IVIg) and YES she is back to her usual sweet and loving self. Homework? Forget that stuff right now. Your child is seriously ill and just do what you can do. Juggle the ways to keep as much peace in the home as possible because EVERYONE needs that right now. If they don't understand about homework SO WHAT. You are going through a personal trauma that few understand. PANDAS is horrible and it can ruin lives. Eventually because of everything (and debilitating OCD) you wrote about above our entire life changed....no more job for me, no more school for her, no going out for dinner and rarely could she even go grocery store shopping and birthday parties were OUT OF THE QUESTION. I lost all respect in the community from school personel and my coworkers and peers. There were times doctors tried to put her in mental institution for my safety...these docs we had dealt with had never seen anything like it and neither had I. I had already raised 2 children to college age and I knew that it wasn't a parenting issue and wasn't a behavioral problem but getting other people to know that was HARD. While dealing with some of these issues a child psychologist taught me a 'safety hold' which is basically a way to restrain my dd for safety of everyone involved. It helped. Basically it was a big hug which held her legs and arms still and all the while I would tell her that I was there for her and remind her that I was just keeping her safe and that I loved her with all my heart. Afterward (and ours would last up to 3-4 hours long at times, my poor dd would sob and feel so guilty and apologetic. Those times are so hard for us to think about because all the physical pains she gave us were 10 x compounded by the emotional pain we were experiencing by seeing her like that and hearing these things from her. And after the horrors of the things she said and did there literally were times that, once I knew she was safe, I just had to get away for a few minutes in my room by myself to allow myself to decompress so I could be there for the next time this happened. I was afraid that I was helping to 'create a child that is learning to manipulate' too. While I do feel that my child does try to get her way she does NOT try to do this with physical violence or abusive words ANY MORE. I can sympathize with you not getting support regarding this diagnosis. I am still down right angry about my personal situation regarding that and am working every day to try to get over it. But that is pretty fresh and personal to me and so I won't go into it. Don't even get me started on the people interjecting opinions or the people in the community who are CLUELESS. When I read your posts, my heart just breaks for some reason and I have a hard time responding. It really sounds like your dd has pandas to me. I don't know where you are with all this right now but if I was able to do it all over again I would not have waited to do a steroid burst and IVIg. We had some extenuating circumstances because we were so isolated living in Italy at the time and did eventually have to completely relocate to the states to find a doc to help us. We had horrible internet and constant power outtages because we lived in an italian farm villa so I could not research like I needed to...but if I knew now what I knew then I think things could have gotten under control with us before it got to the point that it did. I wish you the very best. I apologize for the random quality of this post, I know I was jumping around a lot. regards, amy s

This sounds promising! Thanks for posting this. I am going to look into it more when I have more time.

Hi Beth, As far as treatment options, most of the literature says to treat with cognitive behavioral therapy and typical OCD meds or medications for tics. However, this is highly suspect with parents of pandas kids. We've tried these options and did not get relief. The main treatment option seems to be getting AND staying free of strep which usually is possible with antibiotics. I know there is a fear of resistance, and it is real and scary, but the severity of my child's symptoms were such that it left NO question regarding what to do (long term antibiotic prophylaxis). There are a ton of things discussed on here as to what the best treatment options are...including supplements etc....check in frequently and you will see people discussing all sorts of things they have tried. But what works for one may not work for all. Good luck, Beth. regards, amy s

Hi all, I just wanted to give an update regarding my pandas dd. Quick history first: As most of you know she developed sudden and dramatic/debilitating OCD out of the blue August 2007 while we were living in Italy. She had a complete personality change (went from very smart, happy go lucky very funny kid to making suicidal statements, lining up her toys and bizarre behaviors) She had severe rages which at times lasted 3-4-5 hours long and needed maximum community assistance. She had hand tremors previous to this and when pandas OCD hit the tremors increased to her arms, head and upper body. She was extremely ill, had all the classic urinary symptoms, huge pupils, separation anxiety. PANDAS being as it is...nobody knew what was wrong with her, labeling her as possibly autistic (BAM! at age 6) , possibly schizophrenic and/or any other number of issues. This went on for a while with a few times over the days and months when things calmed down for whatever reason only to return more strange and bizzare. Long story short we made our way back to the USA.... and with a lot of work and email/telephone help from Dr. K (to me) and on to our new pediatrician she received IVIg 12 weeks ago. (Dr. K website is www.webpediatrics.com ) On to the update: She has had a unbelievable change and is now still nearly 95% better. We really don't even see the sub clinical OCD that we used to about a month or two ago. NO rages at all, NO skin picking (she did this pretty bad for a while) She has been back in school for the last 5 weeks with not one issue that required my assistance! We have not seen any major relapses. There has been 1-3 times that we wondered if she would get 'sick' again....once recently she wasn't feeling well...was acting just a bit off (but NOTHING like the above description of her previous pandas episodes), but she was definately 'off', including her coloring in her coloring pages. Anyway, she had very red ears, red cheeks...I took her temp and it was 100.4. I had her rest in her room (while I paced the floors) and as her temp slowly came down (nothing given to aid with that-- it just came down naturally), her behavior normalized; it was really phenomenal and I don't know what to attribute this to- maybe the antibodies beginning to act appropriately? Today we had a meeting at school. Prior to the holidays she had to go to homebound school status and a teacher came out one hour 3 times per week to administer the testing, etc. And she had an IEP, for behavioral reasons only. She was labelled as "Emotionally Disturbed" for purposes of the initial IEP. Now, this really upset me, because to me this was a medical problem, not an emotional one, but it was the only thing they would give us so she could get services (prior to being homebound she had a full time para and multiple suspensions). Today's meeting was very positive and everyone on the 'team' felt she no longer needed or was even eligible for an IEP so services have been stopped! I agree...she really is just like a normal kid again. Totally amazing to me. Now, if a time comes in the future that a new IEP needs to be implemented, she will be qualified under "Other Health Impaired" as it should have been to begin with. Now we have all these people who have seen the transformation and nobody can deny the amazing difference. I wanted to post this to offer hope to some people out there, probably some parents that haven't even registered on here yet (I lurked for months, too exhausted to put our story into words). I do realize that we could have an exacerbation of symptoms again and I feel for those on here who have... I have hope that my dd's immune system is beginning to respond appropriately. Before, there were times that I would wonder...."my dd's symptoms are not exactly like the others on here...what if my dd doesn't really have pandas, it is something else?" I bet others have wondered the same at times. But just remember that not every child's symptoms will be the same, although many have striking similarities, but every episode can be different even for the same child. Please, to you new parents out there dealing with these new, bizzare symptoms....stick with your gut feelings, educate yourself and push...if you can't get help from your current doctor go to one who can help you. But also remember to take care of yourself too. Now what's left over as far as symptoms for my dd? Perhaps some low level anxiety, not much. Still has the hand tremors which she had prior to the pandas start (I read somewhere that certain signs such as milkmaid grip and tremors can/not always be a 'soft sign' in pandas patients prior to explosion of symptoms). She occasionally tells on herself, but really I don't know if that is a 'symptom' or a habit. Also she no longer has ANY urinary issues! She does still have loss of math skills--I guess you can't just expect those to just pop back into her head, especially since she missed so much school too. She also seems to have a low level issue with staying focused which she didn't have before. BUT, my dd doesn't seem to have what others here mention as far as the spaciness and stuff like that...if she does it is extremely minimal. She took Risperdol and Zoloft for a long time and no longer takes either of those, thankfully! We stopped those on advice from Dr. K prior to doing the steroid burst trial to see if IVIg would be effective for her. No need for response, I just thought it was a good time to post an update. Wanted a positive story on the front page for those parents who need it.

browneyesmom- I just wanted to offer some support and echo what everyone here is saying. I feel so bad reading these posts sometimes that I have no words and don't know how to respond. I find it hard to get an actual 'diagnosis' of PANDAS, and my child has even had IVIg because of it. The closest thing we have is 'autoimmune disorder'. As far as healthcare providers, Dr. K and a pediatric rheumatolgist were the biggest sources of help for my child. Also a pediatrician who specialized in Lyme disease was helpful, believed it was PANDAS and ordered TONS of labs for us. But in the end our (eventual) pediatrician is who I credit with saving my dd's life by basically listening to the advice, thinking outside the box (RISKS VS POSSIBLE BENEFITS really isn't outside the box but getting some doctors to think that way can be hard at times) and like someone else said finding that doc who wants to be an angel, not a God. But I will tell you we literally travelled all over Italy and Germany and eventually had to make our way back to the states until we could find some help. (we were living in Italy at the time when my dd got sick) In addition to prophylactic antibiotics and antivirals, I give my dd 1200mg of OMEGA 3 twice daily, also probiotics from Klaire labs, Mastica, Immudyne immune support Macroforce PLUS Ip6, and Ola Loa multivitamin drinks. I did give ibuprofen for about 2 months but we stopped that after IVIg. IF things get worse for my child I am going to try Transfer Factors, but am waiting on that for now. We did homebound school for a while but that was because school eventually just wasn't possible for my child until just recently. But for a long while my dd was able to maintain at school, sorta. My thoughts are with you and all the rest of us. Hang in there. I'm glad you found this board; I know, it's been extremely helpful to me.

Hi erica, Without a doubt YOU KNOW if there is a change in your child, like you said, a switch was pulled. Unfortunately we all too well know that feeling. I don't know if I can answer your questions as to what the best line of action is, but I will tell you what I would do... at least for a couple of days I would ride it out and see if it gets any worse or better. The reason I say that is because perhaps you will start to see other symptoms that might clue you in that it is possibly something other than strep (maybe viral?) causing the change. Also, sometimes I think that when that has happened to my dd, it seems like things might get a little better if she has a chance to get away from the offending carrier (for example if someone in class has strep, then gets treated)...she would sometimes not get worse. Does that make sense? Anyway, YES, from my experience, it is possible, that symptoms can come on from exposure alone....and I've heard from several docs that this is not uncommon in an autoimmune illness. I don't know if he can actually get strep with the antibiotics onboard, but I suspect it is possible too...although doubtful that it would show on culture. Have any doses been missed? I know also that others have had only short term improvements with the various antibiotics that have been tried and so go on to try something else. But I don't know that I'd jump to that just yet. The change was noticed yesterday? I'd vote to wait just a bit longer... If you can. For sure, start looking in siblings and your own throats and maybe think about getting the household strep cultured. I know what you mean about wanting to put them in a bubble. My child just started back to school recently and this has been my biggest fear. I've seen mild symptom relapse just since dd's going back to school and coming down with minor illnesses and this is AFTER IVIg and on prophylactic dose of Augmentin. In fact I could kick myself. Just this past weekend, I had a 'get away' to visit my sister and her children. My dd did not go. So, since I went to visit my sister, I have felt kind of crummy. I contacted her yesterday and asked if anyone was sick and wouldn't you know that 2 of them have strep. So, I was exposed all last weekend. I have felt rotten, but no fever, no sore throat, etc. My pandas dd, just tonight has huge pupils again and is acting a little 'off' (nothing like before) but boy does it have me in a twit about it all. So I am kind of in the same boat. I'm going to wait a few days and see what happens. Any other changes and I will be on the phone to her pediatrician and I will probably go in myself for a strep check tomorrow morning. Good luck to us all!

Sorry if it's a bit personal but you have to just wonder some times... I am an RN and have been in nursing for 20 years (and of course had never heard of pandas prior to this whole deal) but I keep wondering how many others (of you guys) are nurses and others in the medical fields or in research or otherwise ... any other highly enterprising individuals among us? You guys seem wicked smart or otherwise successful. The reason I ask is because I believe somewhere on Dr. K's web page I saw something about the phenotype for these kids as such. And a few recent posts got me thinking... Another question... now after knowing very well what OCD looks like, I am starting to see sub clinical, low level OCD tendency in both my husband and myself. We like CERTAIN things 'just right'. It's not anything that bothers us and we NEVER noticed until the full blown OCD my dd had with her pandas episodes....but still...we notice it now. Does anyone one else notice that (pandas parents)? Regards, amy s

Pmoreno- I think I have mentioned this with you in the past, but my dd also had HSV 1 lesions and has for long term. She was under a year old with her first outbreak and for some reason just could not shake it. She eventually went on long term prophylactic antiviral therapy with Acyclovir and has done amazingly well with it. She has been on it for years and every doc that I've dealt with keeps telling me that the drug has been around for 20 years with very little side effects and has an amazing safety record. My dd had cold sore outbreaks on her face about every 5-6 weeks and then started to get them in her eye and that is what prompted the prophylactic dosing as it can cause blindness (the leading cause!). When her pandas episode first began everyone, me included wondered if it was due to the acyclovir and she was taken off it only to have continuing pandas symptoms and then continuing outbreaks in her conjuctiva of her left eye. And actually many times over the years she has had several month 'breaks' from it to see if she would still need it, and yep, she still does. Anyway, after pandas came into our lives and when my dd first exhibited the symptoms many thought she was suddenly autistic at age 6...and someone at that time gave me a bunch of research papers and info and one of the things I remember reading about was Stan Kurtz's research with his child and others regarding antiviral therapy. I'd bet there is something about it on latitudes somewhere, I haven't done a search, but here is a website with some info I thought interesting and might be helpful to others as well. http://www.tacanow.com/medical/comprehensi...iral-autism.htm Anyway, I have often wondered about pandas being on the spectrum and how all these things come into play, but I have thought at times that my dd's pandas symptoms are not only strep induced but also HSV induced (at times, not always), as well as other viruses and bacteria that we all know our kids have issues with. Anyway, I have wondered if perhaps my dd's pandas type symptoms had been repressed due to already being on an antiviral long term ? who knows. Anyway, I wanted to pass that along to you. Good luck with the upcoming spect scan. Which by the way my dd had a spect scan too, prior to doing IVIg and it did show basal ganglia inflammation indicative of OCD. Well, like I told you before, I already knew she had OCD...I just wish we could find something that shows what the heck is wrong with their immune system exactly to cause all this mess to begin with. Anyway, I know I already told you that stuff privately but I figured I'd say it on your post since there are so many others out there needing all the info they can get. you, gaby and your family are in my thoughts. I hope you find answers soon.

I don't have much time right now so I will write to you later...but I wanted to let you know that I have had a telephone consult, exchanged several emails and my child has used Dr. K's IVIg protocol (given by our private pediatrician) with great success. You are in good hands with Dr. K. There are many more that I am sure will get in touch with you regarding their experiences. Dr. K knows these pandas kids well. I will write more later. regards, amy

I'm very sorry to hear about your child. I think if it were me, I would try to obtain prophylactic antibiotics to keep that strep away. Once the strep is gone and for longer than a month you can reevaluate your child's needs. Michelle might be right that there might be a carrier in the household. Get everyone checked. Our pediatrician was very good for prescribing antibiotics prophylactically once I brought in medical research papers regarding it. Also the best specialty doc I took my child to was a pediatric rheumatologist. He helped to confirm that what my child was going through (sudden onset severe OCD with tremors, personality change, rages, regression following sore throat with fever that for whatever reason cultured negative so no antibiotics were given) was probably autoimmune in nature and that antibiotics and Dr. K's suggestions were valid, given my child's history. Possibly due to the asthma and severe allergies ...an immunologist could help too. Have you seen Dr. K's website? www.webpediatrics.com It has some useful information on it. Good luck to your family.

If you go on the Childrens Hospital of Pittsburgh site and type in Pandas, the study will come up. Tyler was seen about a month ago. They are pretty much doing research for the study and not really any treatments. They will do throat cultures and bloodwork. The doctor I spoke with is against IVIG or plasma exchange. She is sending me a letter explaining Pandas and requesting antibiotics to be given to my son. She said it will make things easier with the pediatrician. I have all the contact numbers if you need them. I'm thrilled to see that they are doing some research r/t pandas and also to strep throat and also the rheumatic heart disease one! Any and all research will be good for us. I just today had the chance to go look at the site. A long while back I had been going to any university/hospital website that I could think of to search out current studies ongoing. Also it is GREAT that the research doctor wrote a letter for you to help with the antibiotics. Too bad they don't agree with ivig/pex right now. Definately more research needs to take place so everyone feels comfortable offering a treatment plan to these kids!!!!

peglem- I totally agree. It should be considered a variant of SC. It is sooooo similiar. It's my understanding that psychiatric symptoms (mainly OCD) is very common with SC. There were many many times "I" wondered if my dd had SC because her tremors and her gait changed so significantly. And once she had an EKG, I wondered if there was a Rheumatic Heart Disease component of it (later ruled out supposedly with an echocardiogram) because her ekg showed..."irregular left atrial rhythm, possilbe left ventricular hypertrophy and nonspecific ST abnormality." Anyway, I think it should be explored as a variant of SC. And it would do our kids/families a world of good if insurance companies, etc would recognize it as such. This is something I wonder about a lot...it seems like pandas fits on some sort of spectrum....but where does it fit? I've heard others say it can fit on the Autism spectrum, and while that may be true, I think it is closer to SC and Rheumatic Heart Disease (or maybe they're all on???). Although...interesting...before my dd's first pandas episode she would never have fit on the Autism spectrum, not even pdd-nos. But during her pandas episodes she sure did, lining up her toys and all. This is just very scary.

I am so sorry. Hang in there. I don't have any words of wisdom, but I think if it was my dd I, like you are, would be very suspicious that she was exposed to something in school. I would not be surprised if you got an update that someone in her class goes home with strep symptoms. Will the nurse contact you? This is so scary. I wish someone could help these kids permanently. All the uncertainty is too much...and the toll on the family is significant. My heart goes out to you.

Well, I wish you the best. I've heard on here that some kids with a tic disorder get worse on steroids. I'm pretty sure Chemar has said that several times. When my dd did a steroid burst she didn't have COMPLETE relief of symptoms but enough of a difference that we could tell that the IVIg would be effective for her. I feel bad for your son, I wonder what was going through his head when he was trying to talk and couldn't. Hang in there greeneyes-

When you say he lost the ability to speak, what do you mean? Was it an OCD thing where he thought if he speaks something might happen or something like that? Perhaps you don't know what was going through his head on this yet. There were so many things my child did that were bizarre and I never knew 'why'. Is he able to speak now? This must have been terrifying. (hugs) I vote for getting in touch with Dr. K soon too. Have you done a phone consult with him? I don't know where you are but maybe it is just better to go for an appointment, for you. Have you sent him an email?

I'm glad to hear that your son is currently doing so much better. I know what you mean about researching pandas. I think we all do that. I'm sorry to hear that your child was stricken with this. It is horrible to see such big changes in our little ones. I love that this pandas group is so active. It helps when people tell their story... I remember feeling some relief when I could read other's stories and see that my child was not alone and that people were finding some success with the various treatments. Good luck to your family and child. Regards, amy s

Thanks Worried Dad- this was just what I was worrying about. Today is my dd's 3rd day back to school for several months and since IVIg so I'm a little (well, a lot) nervous about exposure. It's good that the symptom explosion in your ds wasn't as severe but you wonder what might have happened if you didn't go to the doc in a panic. Good thinking, for sure. regards, amy s

I'm just thinking ahead and wondering what to do when this happens. When I get information that my pandas (post ivig) child has been exposed to strep for a significant time period (all day or something like that) what is the suggestion? She's on prophylactic antibiotics now. Do I call the pediatrician and get her on a full course rather than the prophylactic dose? Do you wait and see if there will be any (pandas) symptoms before doing that? My gut instinct is to give the full course right away without waiting for the symptoms to show up if I know the contact was significant. I wonder if there is any evidence that would help make that determination. I have read somewhere before that it has been done but I can't remember where or by who and of course convincing the docs can be hard, as you know! Any thoughts on what is expected? What if a Rheumatic Heart patient was exposed to someone with strep while already on prophylactic antibiotics....do they give the full course to them? Anyone know? Regards, amy s