Suzan

dcmom, This made me smile since dd8 has issues with her underwear every morning for a while now. We rushed to the store the other day before school when I had finally had enough. You should have seen us running into the store, me saying "OK, focus everyone, we are here for one thing and one thing only" and the kids hollered out "UNDERWEAR!". I bought her a size bigger and they seem to be doing well for her. She laughs at the size for her bottom, they are huge, but somehow they have not bothered her the past 2 days. I guess she prefers baggy panties! Erica, we have gone with full (age appropriate) disclosure too. My dd really was helped knowing there was a reason she could not control herself. Before we learned about PANDAS she's ask why she felt bad or why she was afraid or worried all the time. Now she has something to refer to and we can talk about it easier. Plus, she's always around me, it's practically impossible to hide anything from her anyway! Susan

I could have written this this morning. DD and I have been getting into it so badly. Sometimes it's hard to believe that she can't control herself. I wonder how much more I should be doing, how much less I should be doing, how strict, how understanding. But she's driving me crazy. This morning, I told her that her behavior was going to ruin our relationship. Now she's afraid I don't love her any more. I would give anything to take those words back. Susan

My dd8 has a canker sore and she is struggling right now. I think she picked up a virus in the hospital or at school last week. Her episodes always increase when she gets a canker sore and her separation anxiety is up too. I agree with you on the virus front. I'd like to give prednisone a try sometime. I'm glad you have made an appt. I hope you get some help from her. We go on the 16th I think. Keep us posted! Susan

I find this an interesting question especially since we are dealing with yeast too. I found this article which is a little heavy for me this morning but I thought I'd pass it along. This is the link to the page I was looking at: http://www.pubmedcentral.nih.gov/pagerende...amp;pageindex=1 and this is the beginning: http://www.pubmedcentral.nih.gov/articlere...i?artid=1141187 I also saw some references on google that indicated that immune deficencies can present themselves as Candida. Probably not much help for you but it did get me thinking.... Susan

That's one of the first things I remember Diana saying the first time I spoke to her, wondering what's up with the strep in NC! We were exposed in 2002 and 2003 with the strep that I think started it all. I got it in 2002 and it got me very sick and it was very painful. I've never experienced strep like that, being so painful in the limbs and torso. I got it twice in 2 months. I remember thinking if my Mom wasn't on her way back home (I was on maternity leave) I'd have to have her swabbed for strep to see if she was a carrier. Dr. O'Connor is requesting DD8's medical records. I am very interested to see what it has in her records from that time. We need a data base or something to list medical history, test results, etc. or a survey that will compile all the results. Data, I love all that stuff to help look for patterns, trends, to solve the puzzle. Susan

For dd8 its timed tests and focus. ( I think I messed up on the poll results ) Also, comprehension. When she's in an episode, she can't understand her homework nstructions. For dd6, it's her handwriting. It goes completely during an episode and takes a while to come back. Both are very good at math. DD6 is having trouble with spelling and reading, but she's only in the 1st grade so they are not considering her behind at this point.

My brother kept getting strep several years back. No one could figure out why so finally my step-mom brought everyone in for a strep test. My Dad cultured positive even though he had no symptoms. He had to go through 2 rounds of antibiotics until he finally swabbed negative. It was only then that my brother stopped getting strep. My girls have gotten strep the last 2 times we've visited them. I have started to wonder if my Dad (or someone there) is a carrier again. Susan

We've used them too for yeast/Candida. Our Dan! doc prescribed them. We've used a few, fluconazole (sp?) is the most recent one that my dd is on. We only use them if we think the yeast has gotten so bad that it needs a boost before relying on Threelac and other probiotics. They have helped us a lot but I do think it's not good to stay on them for long periods of time. After dd's recent hospital stay and the massive antibiotics she was on, along with her zith, I think she needed it. I'll do a few weeks and then beef up her probiotics. susan

Hang in there Sam! Please email or call me if you need anything. Of course I will be thinking of you guys this weekend! Susan

Our 2nd appt is not until mid October. So far, I feel cautiously hopeful that she will be able to help us. I know she is very interested in PANDAS and wants to look at all angles to try to find any underlying issues. How she will deal with the data once she gets it, I don't yet know. I was very impressed that she is the first doctor ever to ask to see my dd's entire medical history since birth, including interviewing my parents and brother. Considering the trouble I've had finding someone willing and interested in helping, and it sounds like you are in the same situation, it would be worth it if there is not another closer option for you. Susan

Our dentist said that the bacteria that causes plaque is a strep bacteria. She did not know if it was related to the strep we are all concerned with but I find it interesting that xylitol helps prevent cavities and also may help kill strep bacteria. I can't remember the name of the strep she was referring to though. It may just be because of the shape, you know?= Susan

My 6 yr old had similar seizures but they did show up on an EEG. They were general seizures where she did not convulse but she would stare off for 7-10 seconds. She was having 100's a day but they would not show up visually unless they got over 4 seconds long. She was on seizure medication for a year and then got a normal EEG. She is now seizure free and med free. We believe that her seizures were caused by gluten intolerance or possibly celiac and now that she is gluten free, they are gone. Just thought I would mention in case it's somehow helpful. Susan

So... dd8 had surgery over the weekend (I mentioned it in another unrelated post so you may have read about it). I'm getting a little confused about PANDAS symptoms and episodes. It seems like anything that happens to her can cause an "episode". I don't know if I can even write my thoughts very well about this. This may make no sense what-so-ever.... The day before she was taken to urgent care, dd6 refused to play with dd8 and dd8 was frustrated when trying to get into the house from the car (she still could not walk at this time). She started hitting herself in the head and face, rolling around on the floor, crying, angry, whining, laughter (the kind she gets when she does not feel well), something that looked like facial grimacing, wild looking eyes, could not pick out her change of clothes without similar reactions. She could not stop. Somehow she managed to snap out of it and have a good dinner. Later, very tired and could not get comfortable. She had a twitch like a muscle spasm in her hurt leg (thigh) that would not stop. The next day we find out that her appendix needs to be taken out. The urgent care doc presses around on her tummy and after a while, dd says she thinks she can walk, and she does (?!?). So she gets her appendix out, all kinds of drugs in her system and she starts to go nuts again. More of the same behavior as above. By the time we get home, she's horrible, angry, unreasonable, unable to control herself, crying that she just wants to be happy again, that she does not feel well. I start her on an anti-fungal in desperation, stop the codeine. Next day (today) much better (thank the Lord). Glutened.... She's gluten sensitive, possibly Celiac. When she has gluten by mistake, she has very similar neurological/behavioral reactions. She had some burning poop tonight, a sign of gulten so now I watch to see what will happen. Between PANDAS. Candida and Gluten, and probably any other virus or bacterial infection, I don't know whether I'm coming or going. I don't know whether to up the antibiotics, push the probiotics, search for hidden gluten, call a psychiatrist. It only takes a couple of hours before I realize I'm completely afraid of my daugher again. I'm so sad. Susan

I would like to know more about these results as well. My dd's were elevated on just about all results. I am imagining as more research is done we will find out so much more. I just wish it was happening now! In case anyone knows the answer to your questions, I'll be watching. I hope my immunologist really will contact Dr. Cunningham and maybe find out more. Susan

My daughter's test that the neurologist received back were all normal except for the HHV6 which was elevated. The nurse said the doc said that this "may or may not be significant but if she's doing fine now, since she can walk again, we can just wait and see". I said, "well, she's acting like a little evil demon but yeah, she can walk." Does anyone know anything about HHV6 titers? Her result was 1 to 40 where the norm is 1 to 20. I have no idea what that means. I found this definition on the internet to just try to begin understanding what this might mean. Of course the word encephalitis is never comforting. Human herpesvirus 6 (HHV-6) infection is often asymptomatic. Symptomatic manifestations occur predominately after primary infection in infants and after either primary or reactivation disease in immunocompromised adults. Children: Approximately 20% of HHV-6 infections manifest as roseola, with an abrupt onset of high fever that lasts 3-5 days. This is followed by an erythematous maculopapular rash that appears when the temperature normalizes. The rash starts at the trunk and spreads centrifugally to the face and limbs. More commonly, the infection presents as an acute nonspecific febrile illness in a child younger than 2 years. HHV-6 infection may also manifest as a rash and no fever. Irritability Ear symptoms, otitis Upper respiratory tract symptoms Gastrointestinal symptoms, including liver dysfunction and hepatitis Fever-induced seizures Bulging fontanelles Symptoms of meningoencephalitis

I'm not sure, I better get my ducks in a row about it before I go to the doctor. We see our Ped tomorrow but for my other daughter. I can talk to him about it, I know he is not up to speed on steriod burst but maybe her neurologist is. For now, I'm also keeping her on the zith. I better go back and read this post about the probiotics that don't get killed by the antibiotics. Susan

I do have some anti fungal left over from an earlier time. I'll ask her doc if we can use it now to see if it helps. She really has that demonic quality that makes me think PANDAS but I know it can be yeast too. Susan

Eileen, Thank you for this perspective as well. It does feel PANDAS for sure. I'm afraid to wake her up again in the mornings for fear of her reactions and I'm finding myself crying a lot more out of frustrations. I will work on the yeast but also look out for this too although I guess there is nothing to do but wait if it is PANDAS flare up. Diana told me about this in relation to a cavity that she needs filled and I was totally worried about her having surgery but we had to do it. Did her episode last as long as it might if she had strep? Susan

My dd was in the hospital over the weekend and had to get her appendix out. She was already on zith for her PANDAS and in the hospital she was bombarded with antibiotics too. It really messed with her gut and now she's an emotional wreck. I am wondering if it is the yeast overgrowth doing it to her. I hope things are going better at your house! Susan

Oh No! I agree that you should get swabbed too just to be sure. I don't know much about erthyromycin so I'll defer to the other parents on that one. But I sincerely hope Shae does not get strep. I am worried about you guys! I HATE that I woke you up so late after you spent the day at urgent care! What a crazy weekend. I can only imagine how worried you are about Shae but also your son. I pray that he processes this strep and never gets any symptoms of PANDAS. Susan

mom_md.... how do you feel on the topic of the allergy shots for PANDAS patients? We saw the doc today and we really like her. She will be talking to us at some point about allergy shots too. She's also interested in revaccinating for prevnar due to the failed pneu titers. Do you have any thoughts on this? I let her know my worry about any vaccines at this point. She and I will talk about it all again after she fully reviewes all dd's records. I was especially impressed because she wants our entire medical history from birth, as much of it as we can find. We go back in a month and will take it from there. I feel like she will do her best to find out the underlying immune issues we are having so I would recommend her since she has a high interest in PANDAS even though she is still in the learning phase. Susan

Not yet but you know I soon will be. Can I just follow you around and go to all your doctors too? Lupus... really? Wow... I did not know that about the neuro aspect of the condition. I am glad you will be getting your workup soon. This is all so complicated. Do you have a rheumatologist that you work with that you like? Susan

Congratulations on getting to this point and having a doctor who is wiling to work with you. I'm sure you will see great results with the zith! We noticed big improvements within 3-5 days. Our neurologist just recommended Origin of Life liquid vitamin for us for starters. He said it's what he thinks will be of most use to her. Thought I'd pass that along.... susan

Thanks Sam! She did go to school and had a dentist appt so she left a little early. She fell so badly trying to get on the bus this morning that now her other leg is badly bruised. She was dragging herself around the house tonight by her arms and otherwise I'm carrying her everwhere I can to give her a break School was OK but the walker is killing her (it's really too big). We ordered some crutches that we can pick up tomorrow so hopefully that will help her get around. We went to our chiropractor and he agrees that an x-ray is not needed (he ran one the last time this happened and saw first hand that nothing was wrong). We will go back tomorrow so he can check for any fractures. Otherwise, she will just hang in there and hopefully we will figure something out fast and hopefully the new immunologist will be of help to us somehow. Sorry this got so long in mom_md's post I'll post tomorrow how our visit goes. Susan

I have not been here yet but I have been in contact with them and this is where we will go if the Charlotte immunologist does not work out for us. They run a clinic and see patients on Friday's. The doctors there have read my daughter's histories and would like to see us. They see PANDAS and other immune related conditions. Dr. Markert and her associate Dr. Ivan Chinn. Dr. Chinn has a clinic on Fridays (Dr. Markert does not have a clinic). Pediatric Allergy/Immunology Box 3068 Room 103 Research Park Building IV Duke University Medical Center Durham, NC 27710 Phone: 919-684-6263 So far, in Charlotte, this immunologist seems the most promising - Dr. O'Connor with Carolina Asthma and Allergy. We go tomorrow for the first time. Susan