ma2ar2rm2

very useful information.... Thanks for sharing.. and it looks like there is one with in an hour from me.... this will be good to know when I don't want to fight with the doctor.

That is such a wonderful thing to happen..I'm so glad God lead you to a doctor who was willing to listen and learn and that though your child and you He has been able to help other children. What a blessing. I hope and pray one day I can say the same for my DD8 ped. He was wonderful a few months back when he saw my dd and a month later told us it was PANDAS... I was ready to put up a fight to make sure she was given the antibiotic long term.. but he seemed willing to do that... ONLY now at yesterdays appt I'm begining to fear that his idea of long term and mine do not match up.. Everything I have ever read over here is that the child with PANDAS HAS to be on an antibiotic.. We found out on 4/30/10 that DD had PANDAS she has been on 250mg of Cefadroxil 1 1/4 teaspoons twice a day ever since. Her biggest issue was a Sensory issue and a bit OCD which is what took me into the doctors looking for answers in the 1st place.. after learning about the PANDAS I could see that alot of her other issues such as her moodiness and crying for no reason and alot of her fearfulness was PANDAS related also. because after starting treatment.. all of them went away.. The poor thing had been in my bed sleeping most everynight because she had this all consuming fear of the dark(which I thought was just childhood fear of the dark but seem to have gone away compeletly after being on the a/:unsure: Anyways.. since starting treatment.. She is doing GREAT!!!!! all the Sensory stuff is gone, She isn't moody she isn't fearful, she isn't crying for no reason, she isn't sad and can't tell me what is making her sad, She is the Happy, cheerful little girl I remember before all of this started happening just over a year ago.. Her Ped is so proud of himself that he figured it out and that he was willing to concider PANDAS when most doctors don't.. He admits that the 1st time he heard of it he wasn't a believer and he never would have been until he saw how bad my DD got with this last round of strep throat.... now to the use of a/b he told me when we started this that the treatment for it was long term a/b So I didn't have to fight with him.. Now he is saying "but noone knows how long they should be on it, is it 6 months a year.. or less, I'm thinking 3 months might do it" I'm wanting to scream.. Yes she is doing so well now Only having breakthough moodiness and fear when she has been exposed to someone who has been sick or when she was going to school and streo was running though every class room.. Since summer started she hasn't had on issue not one tiny problem related to the PANDAS UNTIL lastnight.. I think it had something to do with sitting in the doctors office that she might have picked up a little strand of something.. We had her appt at 8am and by 10PM she was crying her eyes out totally freaking out about the dark..not that it was dark in the room.. just that she could see that the dark outside and she couldn't be in a room that I wasn't in.. I gave her motrin and just let her sleep in my room.. but that was the kind of stuff that was happening before treatment.. but then had gone away and she has spent most everynight after getting better in her own room with lights out.. Like I said everything seemed to have been gone.. What scares me to death.. is that if he choses to stop her a/b next month what does that mean for her.... I just know that she will come in contact with strep no matter how hard I try to keep it safe.. and then she won't even have that back up of the a/b there to fight it off before it gets out of hand. When I brought that up to her ped.. he said "we will treat her as a child that at the slightest sign of sore throat we will swab her and if pos get her started on the a/b again... WTH?!?!?!?!? isn't that what you do for all children?????? So I should wait and wait and let my child suffer UNTIL she has a full blown strep infection... HELLO.. he is the one who told me about PANDAS... shouldn't he know that a PANDAS child doesn't have to have a strep infection for her body to make the antibodies and for her brain to be under attack???? what about those time she is suffering from coming incontact with it.. Do we have to let her get worse and worse and worse before treating it???? I don't know what he is thinking and I wasn't armed with info to fight him at yesterdays visit.. I have one month before seeing him again.. and I'm going to need to find all the info I can to help him see.. she needs to stay on the a/b in order to stay well??? OR I am I wrong.. I am so new to this.. So I could be out in left field but I'm pretty sure what I read here said they have to stay on the a/b??????? Sorry for venting on your happy threat.. maybe I shouldn't post this here.. I'm very happy that your doctor has figured it out and is helpful not only to your but is now helping others.. wish I knew of someone in Ohio who was as good..

3 months ago I had never heard of PANDAS... and now I know that that is what my 8 year old daughter has. She will be entering into the 3rd grade this fall... and I need to talk with her doctor.. but her counselor thinks I should try to get a 504 for her... She has never had trouble in school, perfect little child with straight A's.. BUT we need to do something to help protect her while she is at school. They think the 504 will help get a plan in place... sort of to help keep her strep free. If a child in the class has step a 504 would let the school let me know.. It could also do stuff like have her class room scrubed down daily to help keep infections out of the room(you think that would be a normal thing anyways but it's not).. I really don't know what all to ask for in a 504.. or what papers I should walk into the meeting with to help explaine PANDAS to them.. but I'm going to have to get it all together here shortly.

Thank you I like the idea of Letting the other parents know they have to call the office.. and letting them know there is a student in the class who strep can be extreamly dangerous to.. I think most parents would be willing to help out if they knew, well I know I would anyway.. It would be very hard in my case to have each of my children classrooms and teachers doing this.. I have 4 children and all 4 are in different schools come this fall. my youngest is in preschool where he goes in the morning and then there is also an afternoon class who comes into the same room.., then my PANDAS child is my 8 year old daughter she will be in 3rd grade this year at her elementary school. My older son is going to be a 5th grader this year and will be in the intermedate school Which is a 5th and 6th grade school with all the 5th and 6th graders in our town.. and they run it like a Jr High where they change classes for each class different room, different teachers, different set of kids in each class... Then you have my oldest daughter who is starting her freshman year in high school, so she will be moving class to class not just with the 9th graders but with 9-12th graders.. So I do not see me getting that news out to all those different parents. BUT the kids in my Pandas dd's school.. Maybe that is something we can do..

That is so good to know that they were willing to work with you on this.. this gives me hope.. So when you reuest a child studyteam eval.. did you do that at the school or did you go to the school board office?? My dd doesn't have the tic part of PANDAS.. but the high anixity, sensory issues, mood swings I guess you would call it, and a little OCD. I don't think she would need any sort of special education either.. unless she got so extreamly sick with the PANDAS that she couldn't make it to school then she might need somesort of homeschooling sort of work.. But she is an extreamly bright child who loves school and not being able to go would kill her and make her extreamly sad.. So I hope it doesn't come to that.. that is why I would like to get the school onboard with helping me do things to keep her safe and healthy while at school.. The perventative messures to keep PANDAS as bay.. I am a sub for the schools.. and I know that each class room only gets cleaned once a week(at least here anyways) Even when kids go home sick from a class room they don't go in and scrub that class room.. if there is vomitting they clean that up but don't scurb the desk and chairs or anything.. I don't even know what to ask for to help her.. but some common sense things that popped into my mind was if a child left school for being ill in her class room to clean that class room that night, let me know if there is a known case of strep in her classroom(I don't need children names just need to know) So I can watch her and see if she is Ok.. sort of giving me a heads up, If strep is in every class at the school let me know maybe I should keep her home a few days(though chances are she might have already been exposed a little) till it sort of dies down so she isn't keep getting exposed more and more each day.. and let me keep her home and have it be excused and let her do her work from home so she can keep up with the class. Or sort of like you were saying about your child throwing up at school.. there is the 24 hour waiting thing.. but IF we know there stomic is upset due to there meds and not from an illness let us let them go back to school the next day. I don't know what sort of plan I need... but I need to let the people she is going to be around each day know that one minute she could be perfectly fine and the next bitting peoples heads off and she isn't doing that because she is being bad or mean, or she could be her normal happyself one min and the next hour crying her eyes out, sad, or scared for no reason what so ever and she doesn't even know what is making her sad or scared just that she is... or the long sleeve shirt she wore to school that day might have felt fine when she left but all of a sudden could make her feel like somone is stabbing her with knives... and have them helping me keep this from happening to her by helping me limit the contact to strep that she come incontact with.

My dd8 isn't on biaxin she is on duricef but was having the same problem the 1st week she was on it.. but she has been on it for a month now and as long as she has enough in her stomic now she doesn't have any issues.. Since she needs the yogurt and something on her tummy with the duricef We sort of combined the two.. in the morning she gets her yogurt then her meds. right before bed she gets another yogurt and then her 2nd dose of meds.. Though this morning I saw we had ran out of the yogurt so she just ate a donut(yes healthy nuts LOL we were rushing out the door to an appt this morning) and I gave her the duricef after the 1st bit of the donut and told her to eat the rest in the car.. ONLY 30 mins later he stomic was all upset and she was having stomic pains all morning.. we won't be doing that again..

About a month ago we found out that our dd8 has PANDAS. this last month of school Strep has been running rapid thoughout here school K-4.. The school looks at me like I have 2 heads when I pulled my dd out of school one afternoon because there was kids with strep in her class room.. and I asked them to have her class room scrubbed that night so that dd could come back to school the next day. I was telling this to dd's counselor(who is working with her to help with the anixity which came with the PANDAS) The Counselor mentioned that she thought it would be a good idea for me to get dd a 504 though the school so that she would be listed as having a need where I need to know if strep is in the school and in the class. And that her class room will need to be cleaned more then what they normally do and so on.. or that it doesn't count agaist her if I need to pull her out of school to protect her for a day or so to keep her from getting exposed more to strep. She said 504's normally are for disabilities but it also covers medical condictions and she feels PANDAS would be covered in it.. I was just wondering if any of your children had 504's because of there PANDAS?? If so how do you go about getting one? and if not how do you handle there schools? What do you tell there teachers?? how do you keep them safe while at school??

Thank you.. I will keep this in mind if we ever have to go that route.. I pray we don't, but I need to know where to go for help if we do. I'm 1/2 way between Cleveland and Toledo.. So MI. isn't all that far.. and i'm not opposed to driving to Cincy either if it comes to that..

How is he now.. has anything come from the culture and titler??? is he still doing it??

I'm not in need of IVIG at this point.. my dd doctor just told us she has PANDAS about a month ago. But He started her right away on the abx. and that seems to be working really well.. Our Doctor is very new to this also.. my dd is the 1st child he has saw with PANDAS.. and he said 2 years ago he didn't know what to think of it when he read about it.. but last month after seeing my daughter he is now a believer and he is treating my dd.. ONLY I do not know what his feelings are on IVIG.. it has never come up while we were talking.. and He is learning as we go at this just like I am. so I would love to stay in contac with anyone out there from Ohio because I am sure I will need your help along the way.. I'm more towards the Cleveland area.

While I was nurseing and became sick my doctor gave me the Z-pack which is Azithromycin I'm allergic to Amoxicillin so that wasn't even an opption for me.. So I don't know if that is safe while nurseing or not.

Wow! I have so much to learn- I never really thought we had OCD stuff but more and more reading these posts I am learning that the little things that I just dealt with just might be OCD from PANDAS....my son at least is feeling comfortable talking to me about it....this week he has asked for something to hold in the car- he says it makes him feel better....not sure what that is about but I it was something new.... Brandy I am feeling the same way... So so much to learn.. and while reading here alot of stuff I have always just dealt with with my DD who is 8 (and who 3 weeks ago was told she has PANDAS) I'm learning are more then likely the PANDAS.. and now I'm feeling guilty for how I have acted when she was doing alot of this stuff....

I'm very new to PANDAS.. Tomorrow will be 3 weeks since I heard of it for the 1st time and that is when I was being told that is what my 8 year old DD has.. She is #3 of 4 kids.. But my 10 year old son has an allergy induced Asthma (or at least that is what we have been treating him for for the last 7 years.) It started out as a non stop couch.. but last year after I took him off all his meds.. she started this awful sounding clearing of his throat NON stop.. I mean it made me and DH crazy and my parents when he was there or my IL's when he was there.. I never checked with the school.. I asked him why he was doing that he said he felt like he couldn't breath and that helped him breath. So I took him back to the doctor they started him back on his zrytec, singulair and flonase and the throat clearing stopped... So yes it can be a Asthma thing.. or atleast an allergy induced asthma thing. BUT now that I read it could be a PANDAS tic thing(which I never knew before) now I am wondering goodness over the last 3 weeks I want to say everything is PANDAS.. Like when my 14 year old DD was 3 years old she had a childhood tic of sorts where she couldn't stop blinking her eyes.. or twitching her eyes would be more like it.. EEG came back saying it was seizure activity in her brain and she spent 3 1/2 years on seizure medication till she out grew it.. NOW I'm wondering if that could have been something PANDAS also.. I have to like you said stop thinking everychild has PANDAS.. So my oldest had the blinking eye tic caused by seizure activity in her brain my 2nd child (10yr old) has the clearing throat allergy induced asthma... and my 8 year old DD has the PANDAS almost makes me wonder what is in store for my 5 year old DS

Glenn J. Trippe, M.D., F.A.A.P. New Beginnings Pediatrics Norwalk, Ohio http://nbpeds.com/glenn-trippe He is the Dr who diagnosed my dd just 3 weeks ago with PANDAS.. and though he said she is the 1st case he has ever seen, he is very interested in learning and treating this.. He started her on the long term antibiotic without me even mentioning it.. He is the one who introduced me to PANDAS and told me what it was.. and who is treating my DD at this time.

I wonder if its possible that the Mono is back? Amoxicillan is known to cause a rash if you have mono. I'm not 100% sure.. When I 1st took dd into the doctor because I was at the end of my rope and not knowing what to do with her before they figured out it was PANDAS(this was a week or two before Easter this year) they did a ton of blood work on her and from that they found here Epstin Barr numbers were still really high.. He said not high enough to call it mono but high enough to say she is still at the early stage of recoving from it.

Thank you T.Mom.. I went to sleep totally planning to call the doctor this morning.. but when she woke up the rash was gone, she still feels a littl bumpy I guess is the word I can use but the redness and alot of the prickely bumps seem to have gone away.. I'll go and look at the helpful doctor thread here in a minute.. my doctor has been wonderful so far.. He is the one who figured it out and told me about PANDAS.. he talked to me on the phone for close to an hour when he was telling me what he thought she had and what it was all about.. That was on a friday night around 9:30PM that weekend I looked up so much stuff on the internet... everything I read said to be ready to fight with your doctor to get the antibiodic treatment and to get them to really learn about PANDAS.. So I went in on Monday to see the doctor with 3 pages worth of notes and questions and and websites and facts and just armed to do battle.. but he told me how he wanted to treat her and then he told me he has never treated it before but he is learning as much as he can and is willing to fight this head on and strong.. and I just pitched all the papers right up in the air and started to LOL and said I guess I don't have to fight with you we seem to be on the same page.. I knew I liked this man.. he has been all of my children doctors from the day they were born.. He was the pedi. who came and took care of them all in the hospital after they were born.. but I now love him.. the time he has taken to go over all of her charts and the time he has took to look up PANDAS and learn about it.. I just thank God for him.. and that I didn't have to spend year trying things that didn't work and didn't help.... But both myself and the doctor are new to this and we are both learning..

interesting.. Like I said I'm very new to this.. less then 3 weeks ago I never heard of PANDAS.. She has been on the antibiodic Cefadroxil since May 1.. She tested pos for the strep on the 29th and they started her on Amoxicillin but she had an allergice reaction to it and so now they have her marked as alergic to Pennicillin So I"m sure they will no longer give her augmentin since it is part Amoxicillin.. TheCefadroxil which they have her on is a cephalosporin which I found this over at the Pandasnetwork "Augmentin (amoxicillin/clavulanate blend) and Cephalexin, KeFlex, (a cephalosporin) have been very good for arresting most strains of strep. See remarks on Cephalexin superiority over penicillin regarding post-strep illnesses at page (3) of by Dr. R. Hahn, et al (2008) Evaluation of Post-streptococcal Illness." I didn't have time yet to read the study they mentioned here but at this point with her having a reaction to Amxoicillin (I'm allergic to Pennicillin but up until now none of my kids have been) it really doesn't matter because she can't have it.. Do you think that the Ibuprofen and the cephalosporin sort of antibiodic she is on would have the affect we are looking for and talking about??

Oh Karen(that is my name also BTW ) I'm so so sorry you are going though this.. my dd who is 8 has PANDAS we just found this out 3 weeks ago so I haven't really incountered any eye rolling people.. Except One... All my family are just so happy that we have figured out what was going on with Sweet Pea(that seems to be my internet name for her) and that she is getting help.. Not a one of them questions any of this except my sister who lives in TX and only sees dd once or maybe twice a year so she really doesn't understand what all we have been going though.. The one eye rolling person is my DD's 2nd grade teacher.. I went to her to explain what we have been going though she looked at me like I was nuts because Sweet Pea does wonderful in school.. her only thing you could see as an outsider watching her though out the school year was the way she dressed.. Everything was hurting her anything touching her skin was hurting her.. Sweet Pea is a size 7 or 8 girls cloths wise.. But has started wearing 14's and even those she said was too tight and hurting her... She would spend hours crying and crying and crying at home.. but at school seemed fine.. So her teacher sort of didn't believe me. Then I went to her about 3 weeks later and told her that the doctor has figured things out and it was called PANDAS.. and I explained it a little to her and I told her how important it was that I do all that I can to keep her healthy and strep free.. She rolled her eyes at me and said well maybe you should pull her out of school because Strep is like an every week thing around here.. I understand this to a point.. I use to look at strep that way.. all 4 of my kids have had strep more times then I can count and I never worried about it.. just marked it up as sort of like a cold only you get an antibiodic for strep and a cold you don't.. UNTIL NOW.. now that i can see how awful that strep can make my childs life and how scary it is for her and how it is affecting her brain. I tried to get that point across to the teacher also.. and then asked her to just let me know when there was strep in the class room because I really do need to know when she has been exposed to it. Well there is strep in her class now(and my older son has it also) But the teacher did not tell me about the kid who in the class who has the strep I found it out from another parent... I'm so ready to scream.. but there are only 8 more days of school left this year.. So I'm not going to make an issue of it.. but next school year.. when I know more and have learned more about PANDAS.. I'm going to meet with her new teacher and princible explain it all to them.. Make sure they understand.. and make sure I have them on my side to help me with this.. I have been so blessed with my family and with Sweet Pea's friends parents being really understanding when I explain it to them.. and they have been very helpful... and so blessed with a doctor who while never having treated PANDAS before found it quickly and was willing to treat it the way it needs to be. We also started seeing a councellor lastweek who has done some studying up on PANDAS and is willing to work to get Sweet Pea the help she needs and work with her doctors. I'm sorry for the eyerollers in your life and I"m glad the strep carrier is moving.. the far away the better..((((HUGS))))

This is really good to know.. we found out 3 weeks ago that my dd8 has PANDAS.. she has been doing wonderful with all the PANDAS issues since starting the cefadroxil 250mg 1 1/4 teaspoon twice a day. (this was on April 30, 2010) BUT over the weekend my DS10 got sick and tested pos for strep throat on Monday.. and yesterday with my dd8(PANDAS child) she was so emotional, crying at a drop of a hat over the tiniest little thing and snapping and bitting peoples heads off just sort of being nasty if they even breathed around her wrong.. just overly moody I gues.. She isn't like that when she is herself.. she is a sweet child not really a nasty mean side to her.. So I was wondering if this was some of the PANDAS issues.. Sort of thought it might have been.. but then I was thinking to myself.. how do I know when she is just being mean and needing corrected for it or when it is part of PANDAS which she really has no control over.. I'm going to have to go out and get some ibuprofen... I'm really new to all of this and I'm not even sure what Ibuprofen and PANDAS has to do with each other but I guess I better go find out..

Is she on a treatment dose of abx or just a maintenance/preventative dose? Unfortunately PANDAS kids frequently get symptoms just from exposure to strep, as it is caused by the antibodies made when strep is encountered by the immune system. In my experience raising the abx dose or switching abx type can sometimes help. Also, you might try ibuprofen. I'm not 100% sure she started out with 2 teaspoons twice a day of Amoxicillin 400MG.. But had a reaction to it a rash all over her body this on on April 30th after having 3 doses of it.. That is when they changed her over to Cefadroxil.. she was on 1 1/4 teaspoon but I don't know what the MG was on that.. After that they gave her a perscription that she is on now of cefadroxil 1 1/2 teaspoon 250 MG I do not know if that is treatment dose or maintenace dose??? I'm going to go look and see if I have any children Ibuprofen right now.. I normally have some on hand since I have 4 kids.. but I'm not 100% sure.. what exactly does that do for them?? I'm sorry that was a typo she right now is on 1 1/4 teaspoons twice a day of 250 MG Cefadroxil..

Thank you for your help. Is she on a treatment dose of abx or just a maintenance/preventative dose? Unfortunately PANDAS kids frequently get symptoms just from exposure to strep, as it is caused by the antibodies made when strep is encountered by the immune system. In my experience raising the abx dose or switching abx type can sometimes help. Also, you might try ibuprofen. I'm not 100% sure she started out with 2 teaspoons twice a day of Amoxicillin 400MG.. But had a reaction to it a rash all over her body this on on April 30th after having 3 doses of it.. That is when they changed her over to Cefadroxil.. she was on 1 1/4 teaspoon but I don't know what the MG was on that.. After that they gave her a perscription that she is on now of cefadroxil 1 1/2 teaspoon 250 MG I do not know if that is treatment dose or maintenace dose??? I'm going to go look and see if I have any children Ibuprofen right now.. I normally have some on hand since I have 4 kids.. but I'm not 100% sure.. what exactly does that do for them??

Hello I'm new here also.. So I thought this might be a good thread to start on.. We were told on April 30 about 3 weeks ago that our 8 year old daughter has PANDAS. her issues are a little OCD,anxiety and the biggest one for her which made me seek the doctors help was sensory issues where everything that touched her had her in major pain.. At 1st her doctor was telling me she needed a child psychiatrists and should get on some meds ASAP.. I didn't know what to think.. I had a perfectly normal child till end of january 2009 when she got sick with mono and at the same time as the mono got strep.. and it seems like right then and there is when things started to change and I just started counting it as her not feeling well, maybe it's the mono I know it could do strange things to people and make them feel really bad.. only it just kept coming and going.. with her.. getting better getting worse... getting much much much worse.. The last week of April 2010 was the worst I have ever seen her.. It scared me out of my mind.. then on the 28th she started running a fever which almost made me feel better because it explained why things got so much worse.. I sort of was thinking "oh ok she is sick that is why the big change" on April 29 the only way I can explain it is a psychotic episode really.. she cried and screamed and tried to rip the cloths off of her body screaming that they were hurting her, they were killing her and she couldn't take it anymore.. She did this though out her whole doctor visit.. and that isn't the reason I took her in.. I took her in because she had a 102 fever and a sore throat and the school when I called in to say she wasn't going to be there told me strep was going around.. I didn't get to see her doctor that day just a NP. it took me and 2 nurses and the NP to hold her down and pry open her mouth to get the strep test... I had never seen her like that... She is my one who would never talk back, do anything wrong.. straight A, very friendly out going child.. to see her acting this way scared me to death.. BUT!!!!!!!!!!!!!!!!!!! It was because of this that the NP called her doctor right way and he doctor started going over her records and doing reseach and calling psychiatrists and nerologist.. and the next evening on the Friday April 30th he called me and told me he knows what is going on with her.. PANDAS.. he told me it was rare and he has never seen a case but he is 99.9999% sure that is what she has.. She has been on antibiodics since the April 29th.. and we only had one tiny little issue since then on May 6th.. What they have her on is At the time she had strep I had 2 of my other kids test pos. for it also.. so 3 of the 6 in our family was treated.. I asked the doc if all of us needed to be tested he told me no not if we are not having sore throat, fever and or coughing.. All was well she was back to being my happy child and then this past weekend.. my 10 year old who was just treated for strep 3 weeks ago got sick.. high fever sore throat.. and on Monday tested Pos for Strep again. Yesterday with my PANDAS child she was moody, crying at the drop of a hate and afraid to be in a room alone... the big issues with everything touching her hurting was not there.. but these smaller signs were.. Today she has a little red rash on her back around her shoulders and neck.. and on her legs which looks to me like Scarlet fever sort of rash.. but today she is still acting perfectly fine.. no fever no issues with PANDAS.. I don't know what to do.. her doctor is out of town until Monday.. and I don't know if I'm over reacting and it is nothing.. Then I don't know what I should be looking for or what I should do... this is all so new to me and noone has told me what to do if she has been exposed to strep if anything.. and if she does get it again how do they treat it if she is already on the Cefadroxil.. Any help or information or thoughts or prayers or anything would be helpful to me right now.. because I'm scared and clueless of what to expect or do.. Thank you for your help.