Kay

SmartyJones, I had the broccoli and rice last night!!!!! hubby had shrimp in his and daughter had gluten free chicken nuggets, easy in the oven stuff. I know all about the different meal stuff, not only because of the pandas but because we both my daughter and I have been dealing with food Intolerances for years (sure it all had to do with Pandas) I can usually get my hubby and I on similar meals and sometimes all 3 of us do eat the same if it is something like chicken and potato. Just wanted to let you know the broccoli and rice was good and I had it for breakfast also....hope you get yours soon! Kay

Sorry I hit the wrong button, I wanted to add to read the pinned post on the top of the page there is a lot of information there as well. Hope you can find some peace in reading and that you are not alone. Kay

Patti, Sorry you are dealing with Pandas like the rest of us here. Keep reading you will see that there are sucesses. You are not alone. I have a daughter 19 who has likely had this for quite awhile, last major onset was aat 17 but we are sure now that we have researched that she began much before that when she was younger. Right now we are using antibiotics as treatment for her and it has helped a lot. Treatment seems different for each child and we all do what we feel is right for our kid. A lot of trial and error.

Thanks for the info MMC!

MMC, Can you explain the abdominal tic that your son had? My daughter (19) just a couple of weeks starting to think that the muscles in her stomach could be a tic. They seem to be like intense cramping not to be confused with real cramping of the bowels, more like a hand clenching. Is this how you would describe his abdominal tic? It would be nice to know if it was a tic and not nerves. thanks. Kay

We really don't know the cause, we asked the doctor but he really didn't have an answer for it. This is just my idea and nothing to back it up but I was thinking just being on the antibiotic was stirring things up but it wasn't enough to take care of what was coming to the surface...again just my thought no doctor in on that one. kay - very interesting. do you have any thoughts on why that happened like that?

We saw this happen with the anxiety come back again very strong when on augmentin 500 2x a day. We previous had been on augmentin 875 2 x day and doctor reduced it after 1 month on the 875 which we had incredible success with. Once she started the 500 mg 2 x day augmentin about the 2nd day she began to have pretty bad anxiety about 2 hours after each dose, inbetween she was fine but at the approx 2 hour mark the anxiety would come and last about 1 hour or so and then she would be fine till taking the next dose. She was put back on augmentin 875 after about 5 days but her stomach did not seem to be able to tolerate it well...she was then switched to Omnicef 300 2 x day which has been good all around. Hope this helps.

Well Kim no wisdom here. After the boyfriend and strep she was too ill to deal with all that and has been pretty much at home for the last few years. No telling on the times she did try school and social events if she was exposed and had flares as we really didn't have any idea of what was going on. She has just told her friends now that what kept her down for all this time is an auto-immune disease and all her friends were off in college this year so she is just getting to seeing them now since they have come home. Stay tuned. Kay - My son is 13 and not yet interested in a girlfriend. Reading your post made me realize that we will have a whole new set of issues to deal with. How do you help your kids to talk to a boyfriend/ girlfriend about PANDAS? How do you teach them to develop healthy habits so they are not contracting strep or other infections? UGH!

YES!

I agree with being older and having the anxiety can become an issue. It takes more work to undo that, it can become a learned behavior not necessarily knowingly, the body just seems to know when to react since it has been. My daughter though seems to be able to differentiate between the two now. She seems to know if anxiety has come on because she is flaring for some reason or another (allergies have been the main one recently) or if it is an anxiety that has been learned by so many times avoiding a certain situation. She is doing well though in facing those times when she can look at it and say hmmm I feel ok accept when I want to go in that room I don't feel so well...she knows then she can over come it by staying and figuring out what is bothering her about the room etc (ie: can be lights, noise etc)not saying it is easy, still is difficult to do that but I think it will get easier for her and her body won't be reacting as much once she is able to do a situation over and over. If it is anxiety that comes along with a Pandas flare it is not so easy to combat as it seems to keep her in that state...at any rate if it is a flare she just feels plain miserable and wouldn't be trying to combat anything!

My daughter 19 now, but her biggest exacerbation came at 17 although we now know from compiling information for all the doctors appointments this most likely began when she was 5. No issues from then until 17 that stopped her from living her life...she now says that she remembers contamination fears but she dealt with them, she had some quirky ocd issues that she thought was just that little quirks and just kept plugging along. Not until she was exposed to strep by a boyfriend with a confirmed case of strep (confirmed after) did she start with the severe separation anxiety and the rest of her symptoms followed. She has been on antibiotics in one form or another since December 2009, found great relief on the first round of augmentin, saw a big shift for the better. Small breaks showed her back slide. She has been on Omnicef since March and is doing well. She is not 100% (her words) but she is doing so much better. We will continue with the antibiotic until we feel it no longer is giving her any benefits...right now she still feels it is. We have talked about ivig down the road perhaps, but that is as far as we have gotten. For right now we are sticking to what seems to help.

Kudos to your girl!!!

Maybe it was in the middle of an update like you said...it is back! I can vote!

Something wrong with the Pepsi refresh page for voting!!!! It says we are #536!!!! I am holding off my votes till later today, anyone have any info?

Here is my 2 cents for what it is worth. My daughter 19 (17 at the time) was not school phobic or having school anxiety, it was plain old separation anxiety caused by PANDAS. I sat in the parking lot many days trying to get her into school. This was long before I knew of Pandas (now it all makes sense.) There was nothing I could do to help her get in there. We opted for tutoring (supplied by the school) She did go to the school to meet with the tutor after school (was very difficult for her to do even that)(we did it that way because we thought it would help her at the time to still be familar with the building, if I knew then what I know now probably would have just had the tutors come to our home) at the end of her Junior year and online classes still connected with the school her senior year. She still had school privileges and could go in the building anytime she wanted (there were not many) and could attend some of the important milestones in her Junior and Senior year if she wanted. She did from time to time try to go back to school, she would set it up so she could still do her work independently but often it was too hard for her to follow through with, she was still sick. She desperately wanted to be in school so I know it was not school anxiety or phobia. She is a different person now that she has been treated with antibiotics. We are not 100% but I see a different person and one if she had to go to school today would at least make the attempt, but not back then. There is my 2 cents!!! Kay

Nice article Buster! I especially like this part: For those who aren’t aware, strep throat is almost universally treated with antibiotics because for about 4% of the population who have the “right” genetics, untreated strep throat can turn into acute rheumatic fever. About 30% of those who get acute rheumatic fever develop Sydenham chorea, and about 70% of those get compulsions and obsessions so severe as to be clinically diagnosed with OCD. Luckily, once treated, the symptoms tend to resolve. Unfortunately, the symptoms often return with greater severity when the person is re-exposed to strep. I got stuck on the "because" in the first sentence...because we already know that some of the population (who have the right genetics) with untreated strep can turn into acute rf and so on. Because we already know this can happen, why is it such a stretch that it may also cause Pandas!!!??? It is a given that this is a possibility with untreated strep turning into rf. I still don't see this as such a big leap with Pandas. Great information to have, thanks for writing it.

Coco. I just want to say I feel your pain. We went through the school thing when my daughter was a junior and senior. Although we did not have a pandas dx at the time, something was wrong where a child who had consistently good grades, was not in trouble etc all of a sudden could not be in school. They tried to offer what was available to them and it all sounded good until they tried to implement it and then they didn't either have the time or resources which again lead to more pressure to get things done because we were always behind by the time they figured out they could not do what they said they could do which led to more stress and just wasn't good for my daughter to have to take on their failures in their system. We had the meetings with the "Teams" and I know about the "snot-nose 23 year old non-mother behavioral therapist" but ours was a "hip" man who drove a sporty car. I am sure on some levels he meshed well with the students but he really wasn't helpful to us and he was very frustrated by us too. We had a guidance councilor who tried hard to guide us through the process and presented what was needed for us to the "team" but in the end it always came down to miscommunication and no resources. I am not trying to bash them just want you to know you need to be the squeaky wheel and get what you need. I eventually had to demand a meeting with the school principal who was on his way out, it was his last year and really could have cared what we did but he stuck it to us until his last breathe there but I did not let up. He was under the assumption that the system works for some and not for others, and his answer to me was when I asked "what we let her fall through the cracks" was a shoulder shrug! I finally got what I wanted for her that year and then again in senior year but it was not without me being a person I do not want to be, I am honest and fair and expect no less from others, (I too thought being upfront and letting them know what was happening would help them help us) and when I don't see them respond to me in the asme way it turns me into the mad woman. So sometimes you have to be that mad woman, I am sorry you have to be in that position. I also wanted to say, we are in the process of getting my daughter set up for college in the fall, with the dx of pandas we are looking for a single room to keep down possible illness that passes through the dorms and we need a kitchen. We eat very clean, she has food allergies and after talking with the people who service the food who thought they could take care of her fine, we have decided they cannot. Still at this level we have someone (the nutritionist) who wants to tell us what we must do, what test we should have done, and how to heal my daughter, she is the nutritionist at the school, not my daughters doctor and all I want is a place for her to heat up some food that isn't a microwave I did not ask for her help at fixing Pandas. So it never ends I am sorry to say. But I feel your pain. I hope you can have this resolved to your satisfaction and take no less, just because our children are ill does not mean they are not entitled to the same education and same treatment as others. Kay

Thanks for the update, so glad your son is doing well. I think it is really important for those who have had some success to come back and let us know, it gives everyone hope. Happy Mothers Day!

Worried Dad, who is the author of that book? I think I listened to her on a public radio show from Chicago back a few months ago and someone had called in about Pandas, she said she had not studied Pandas but had been in contact with people who had and said there were some similarities. It was very interesting.

Finding this very interesting as my dad had gum disease, probably RF when he was young (died at 52 heart attack) and I started my anxiety issues over night when I had been having on and off flares of infection in a tooth for about a year (tooth eventually had a root canal) I also had stage 4 gum disease at the time of my pregnancy (dentist would not dx gum disease at the time so I didn't know it) didn't have it looked into until after my daughter was born and now she is a Pandas!!!!

Yeah 36! lets keep going, just voted for us and some of our friends!!!

Ditto on Kathy Alvarez, our email came too well beyond business hours. She has been a great help, answers all my questions and promptly. I hear you with the "last feather" needed, for us too it was one more thing even though the docs have said so, there have been no numbers and despite their assurance I still wanted to see this (is that bad?) I was worried it was going to be low! (is this bad too) To moving forward for us all and healing! Kay

After I posted this we got an email with a partial result score was 174 still reading about what it means and looking for Busters explanation.

Any one hear about Cunningham test yet?

Thanks Norcalmom, This is my kid and one I have not seen for awhile. It is nice to have her back! Fingers crossed all the way around it sticks, but I feel we are better prepared if something flares. At least we have a name for it now and aren't walking around in the dark. Lets hope her age means she is outgrowing. Thanks to all who have cheered her on and continue to do so...this board as been such a help to us. I first found it and then told her about it, she was a little leary of me posting in the beginning so I would tell her if I wanted to and evenually she felt she wanted to come on and see what it was all about. It helped her in many ways. So thanks to you all. Kay