Suzan

I am so glad you are feeling better and have a direction to go in! I hope you find some fast improvement! Susan

Hello, I would say it certainly sounds like PANDAS! I'm very glad you will be going to see a specialist. Hopefully one who does not think titers have to be high for a diagnosis. My girls have basically normal titers too even with documented strep. I am sorry for all you and your daughter are going through and I am glad you have found this forum. I know you will learn a lot by reading older posts, all of the great info that has been put together by the parents here. Susan

She was sick last week so we missed it but we got her 3rd or 4th shot this week on Monday. She was having trouble before the shots so I have not been too quick to say our issues are coming from the shots. But I would say things are getting progressively worse, although maybe slowly worse so it makes it hard to attribute it to anything specifically. She was sick last week, all week, with a virus that messed her up too. I got my allergies tested this week and I have horrible allergies. I knew it but didn't realize how bad the test would be. I was messed up for 2 days afterwards. I plan on getting allergy shots now for myself. I really want them to work for me and for her. I don't want to stop early on her shots and not realize that there is a benefit. But I am wondering if it's smart to do it right now. I could keep on talking and talking because I'm confused so I guess I'll just stop now so you are not sorry you asked the question Susan

I posted on my facebook. As soon as the voting starts, I'll send out an announcement to start the voting!

OK, buying What To Do When Your Brain Gets Stuck and Mr. Worry tonight. I'll try to find the Explosive Child from the library although I'm thinking I may just want to buy it. I'll wait and see if I'd like to just have it around. I've gotten help in the past from books on sensory kids like Raising A Sensory Smart Child and Out of Sync Child but I think I need something more like this one recommended here. She continues to struggle. Tonight she said she is getting a lot of twitches that she can't control in her fingers and feet that show up when she is scared but also other times too. I don't think the zith is doing it's trick any more. We see our Ped. Neurologist at the end of March. I'm going to start talking about IVIG. Susan

My dd saw blue or green dots and flashes of light. She would actually duck when the flashes would come. They have gone away now since being on abx. Her dots were different though because she was aware that they were in her vision and not actually out in the world. Susan

I needed some good news. The Dr. Kurlan thing is freaking me out especially on the heals of watching Under Our Skin about the lyme controversy. Susan

When we got Dr. T's labs done, the place we went did have to look some stuff up and it took longer than usual but they figured it all out. I agree, try a different lab, but also, you can call them ahead of time, fax the order to them and have them get it all figured out before you get there. We have done this before. I think if you call ahead and explain to them, they will accomodate you. Susan

We are gluten free and since gluten causes inflammation, we noticed very great improvement when removing it from our diet. It was not a cure at this point but surely helps a lot. I don't know much else about the diets you mention, interesting to read up on. susan

Yes, just rub it on like a cream anywhere that she is irritated, just don't use the applicator and don't insert it. As the others have said, you may also need some oral medication, but the monistat could help with the symptoms. I used it on my girls every time they had this since they were very young. With all tha antibiotics they've been on, they had itchy "bottoms" all the time. Susan

We give probiotics daily, I don't have any that I really recommend that we use except Threelac. I think it works really well. My dd8 can't stand the taste so I also buy capusules of other stuff, I switch around our brands all the time. Also, you can buy monistat type products over the counter vaginal yeast medication and use it topically. This has helped us many times over the years. Susan

My dd8 was a multiple birth and this is considered the reason for her prematurity. dd7 was a single baby and they did not expect her early labor so this cause is unknown. Susan

With my dd8 I had to take Terbutaline and also magnesium sulfate and steroids to speed lung development. Preterm labor started at 27 weeks and she was born at 33 weeks. dd7 I did not need any of it even though she was considered preterm at 36 weeks. Susan

We do. My brother and I had strep throat so much when we were kids. I had my tonsils removed at age 5 and it got a lot better after that. I asked my Mom if I was nutty as a kid in any way that might support a mild case of pandas and she said no. I do remember being very fearful and worried as a kid, but that's it. Susan

dd7 - Pink dd8 - Blue and Green (in that order)

My daughter gets burning hands, feet and fingers. I give her P5P B6 and after a few days it gets better. This was recommended by our Dan! doc. She was tested for rheumatoid arthritis as I guess this can be a symptom. She never got the redness that you talk of with the burning. Susan

Shoot lost my post, but I'll try to type it again although I'm soooo ready for bed! dd8 (maybe both girls? I can't remember) had the rash in relation to amoxcillan She got rashed all the time back then. I don't list it as a known allergy for her, but I stopped giving it due to the "reaction". It didn't really work anyway for her infections so at the time, I was OK with not using it..... Susan

This topic is very interesting ot me, I posted a similar question as well within another topic about the african american population as I was noticing we seemed to be largely "white" population here. My family is norwegian, scothish/irish/german. Pretty much a mish/mash otherwise but largely the northern and western european area to be very general about it with a bit of cherokee indian. Really we were Norwegian on one side and "pioneer stock" on the other. susan

Is this the right one? http://www.amazon.com/What-When-Brain-Stuc...9178&sr=8-1 LLM, I like this idea. I've been trying to talk with her about what is pandas. This might help. Smarty, I have not read that book but I have heard a lot about it. Maybe it's time to make some purchases. I can't imagine this technique working on dd without it making her mad, but who knows right?! Susan

Thanks you guys, it does help to know that others experience this too. Thank you for your understanding and support! Right now she is worried that I am mad because I got frustrated that she was not letting go of a subject. She's having a hard day and so am I. I need to step back and relax a little. Vickie, you did remind me that often all she wants is a hug but she can't ask for it. A hug is the last thing I want to offer, especially since she won't always accept it. But I should remember to try. I will try the breathing technique too. Susan

I don't have any links but our ped. neuro also had us tested for herpes viruses (HSV and HHV6). He said that these were common viruses to cause neurological issues if they body does not clear them properly (my very layman's explination of what he said). I was looking at some labs last night for Lyme from Igenex last night and it indicated that HSV and EBV should be tested if certain bands were activated for Lyme to rule out that virus. My dd was positive for HHV6 and she is on valtrex antiviral to try to clear it. I do see an improvement when she is on these meds. What is the treatment though for EBV if positive? Do you know? Is there one? I'm sure you will get much better info elsewhere but I wanted to share that. Susan

This morning started out with a 20 minute episode because dd8 could not figure out correctly how many hours she slept. She would not let me help her but begged for help. She called herself stupid for not being able to figure it out. She sat at the top of the stairs and cried and moaned and whined and beat the floor and asked "why, why, why did I try to figure it out this morning. It ruined everything!" The thing is, sh'e so smart. She ended up writing down a pretend school schedule that mimicked the hours she slept. Once she figured it out, it was over and now she's fine. This happens with her homework a lot. I told her teacher that I often won't correct her mistakes because it will send us into this for the rest of the night. My trouble is I don't know how to not get engaged. I feel like I don't have what it takes to ignore her. When she is like this, the anger and fear and frustration builds up inside until I feel crazy. It only makes it worse, for her to see me upset or angry. I know this but I can't seem to just stay calm. It upsets her if I ignore her and it upsets her if I respond to her so I have no idea what to do. At least it only lasted for 20 minutes. It would have been hours before. In the middle of it I had her pop some motrin and L-Theaning. Maybe that helped. Now she's fine and I feel drained. I've felt like the abused parent for a long time. Susan

We have done some immune testing on both girls (I've got 2 with PANDAS). So far, everything is coming back in the low normal range, not enough to show an immune deficiency. But they don't show a strong immune response to much of anything so I do believe they have an immune deficiency that we just have not discovered (or they don't understand) yet. The only thing we've really found is a high HHV6 herpes titer on my 8 yr old and so she is on a 6 month run of valtrex to see if we can clear that virus. They are both on daily full dose zithromax. As long as we stay on this daily dose, they are doing OK, my younger better than my older one although she is also much improved. I hope to get her IVIG some day but I am still working on that with our doctors. dd8 has very bad allergies so we are trying allergy shots. No one really knows whether the allergy shots are OK for pandas kids, but we are giving it a try since we don't have much else to try. As long as she can withstand the shots, we'll keep on and see if it will help calm her immune system related to her allergies. Susan

Ginger, I wanted to say hello and to tell you that your story is very similar to ours with the chronic ear/strep infections and such early exposure and normal titers (I have seen ours slightly elevated at times but not anything to concern anyone) and the behavior changes you saw. I am glad you are getting some antibiotic treatment. It took us several years longer to figure ours out so I hope you will really benefit from finding this out now. A warm (yet sad) welcome to our group! Susan PS... also wondering, where do you live? I am interested in cases where the children get strep so young. I live in NC.

Of course now, she's doing much better all of a sudden. Maybe it was a virus and finally started passing. I hope so. Vickie, I did clean the rugs but did it myself and was pretty careful on the water but I guess you never know. You did remind me about the humidifier though. I hate those things but finally gave in since dd was getting those bloody noses. So I got that good and clean, just in case, even though I was doing all I could to try to prevent any bacteria, etc. Were you the person I was talking about humidifiers with where we talked about using a crock pot to get some moisture into the air? Susan