Suzan

Thanks Vickie! I left a vm for the ped and the neuro and have spoken to the neuro's nurse. Doesn't look like the Ped will call me back in time today so I'll have to go to urgent care. They say patience is a virtue right? I must be unvirtuous!

Yes, this is what it is like, she says blue dots and green snowflakes. If her sister does have strep, this would explain a lot. They have died down the past week though, or at least she is not complaining of them now.

I use Natural Calm magnesium supplements for my girls for calming and behavior and it helps a lot! For my almost 8 yr old, I give her 1/2 tsp 2x a day. My 6.5 yr old I give 1/4 tsp 2x a day. Our doc said to just start with what the label recommended and see how it goes and so far I have not increased. I know it can cause diarrhea if too much is given. We also do epsom salt bath soaks to increase mag. sulfites and this helps a lot too. susan

Hi Jena, I don't yet feel like I have the authority to compare too many of my children's symptoms since I don't yet know whether they have pandas. But I do know that my daughter seems to have up and down vision issues. She will go through period of times where she says she has trouble seeing, blury vision, spots, flashes of light..... I have tended to think she's making things up because she wants glasses but now I am wondering if it's related to strep?! So far, all vision testing has been normal though. Good luck to you! Susan

I think dd6 has vag. strep again! She has all the signs as her previous 2 times which were in Feb and March. She is on azythromycin ( a trial from her peditrician to see if her behavior improved). Today is day 5. Does azythromycin treat strep or only penicillin? I thought maybe she's got a yeast problem from the antibiotics (and she may) but these are her classic vag. strep symptoms (watery clear discharge as if she had pee'd a little, no odor, no itching and some yellow discharge). Now if she pees the bed I'll know for sure. Should I call her Pedi (who agrees it could be PANDAS) or the neurologist who is doing the testing for PANDAS or just take her to urgent care and get her swabbed. I hate getting her swabbed down there. She screams and cries and it's so horrible. Oh, by the way, she woke up with a canker sore today too. Weird. Those canker sores have got to be connected somehow. Susan

They told us 48 hours..... I think we missed that window for my dd who had this reaction and she was very sick throughout the flu. My other daughter and I started it the day we started our symptoms. Although we were very sick, we were not as bad off as she was. I thought they had strep so I took them to the doc to get swabbed once the fever started. We had Flu B and they diagnosed it at urgent care with a swab. Susan

Thanks for the link Kim, I hear you about adverse effect reactions being posted more than positive, but still, it's interesting to read up and try to put all the info to good use... In your other post about vit D and antioxidants, it made me remember that I was checking out this the other day.... http://www.lutimax.net/index.html Have you (or anyone) happen to run across anything like this yet? Susan

Hi, I was not able to read the article yet but I look forward to it.... She was tested for biotin through a blood test. Our neuro at the time said that sometimes biotin deficiency can cause seizures. We don't know yet if supplementing with biotin has done anything for her seizures. Our neuro is more inclined to think the gluten was causing them. Either way, we have an EEG scheduled for June 1st to find out if she is still having seizure activity since she's been seizure free for a year. I have read that biotin deficiency is rare but I wonder too how rare it really is. My dd does battle candida too. By the way, my dd had bad cradle cap too when she was younger and it took forever to get rid of. I think she had hers until almost a year old. Susan EDIT... PS, I just read the article. VERY interesting! I may have to up my biotin supplements to try to get rid of my gray hair, I hope her neuro rechecked it in our last visit, I'm not sure. Plus, I think I'll get my other dd checked. She has some of the symptoms of deficiency as well. Thanks for the article!

Oh funny! He's our old neurologist. He's the one who first diagnosed my dd with her seizures. I was not happy with him after a while though for her seizure care because he was only interested in treating the symptoms of the seizures with meds and not trying to find a reason for them. He did find that she had a biotin deficiency but he did not seem too interested in hearing all of the malabsorbtion issues that I found with her other doc and treating her whole body. I'm sure this is just our experience though, I do know he is a very good doctor. I am glad to know that he is very knowledgeable of PANDAS! We need more of that! Susan

We recently had the flu and I gave tamiflu to my girls and myself. It really helped me and my 6 yr old. But my 7 yr old started acting really crazy and started showing signs of tics and tourettes (behavior that I had never seen before, she's an ADHD/possible PANDAS kid with signs of OCD). I would not want to give her tamiflu again even though I'm not sure if it was the tamiflu or the flu that have her those symptoms. Hopefully it won't get to that point with the swine flu! susan

Hi, Our Dan! doctor ordered the OAT for us. The full OAT is a stool and urine sample I think (we also did a comprehensive stool test so the OAT may just be urine). Check out their website for more information at http://www.greatplainslaboratory.com/home/ . My insurance did not cover it so with 2 girls it would really add up. There is a price list on the website too. This test really helped us to uncover many of dd's issues and get her the nutritional support she needed. I highly recommend the test for just about everyone actually! Good luck! susan

Hi Caryn, I agree with you regarding finding the underlying issues.... I have found so many things with my two girls, candida, malabsorbtion, gluten intolerance, dairy allergy, adhd.... PANDAS scares me since we don't know what causes it. If PANDAS really is causing my girls issues, then what? Or is something causing the PANDAS, if they have it? They are on so many supplements to support their system, some issues get better, others don't, others appear, others disappear. I feel like I'm on a roller coaster and it slows down but we never get a break. I'm going broke from the testing, doctor's bills, supplements, medicine, but it's all worth it to help support their system and help them cope. With my 6 yr old, I thought gluten intolerance was our miracle we were looking for last year. But she's still not growing, still not gaining weight, still impulsive but so many things have improved too. Who knows what she'd be like if I had not been doing all this for her for the past 3 years when we first started occupational therapy and then just kept on searching. Anyway, I don't know what I'm saying. I'm just having a little panic attack....

Anyone know if canker sores can be caused by strep? My internet searches all say canker sores aren't contagious but I don't believe it. My dd (7) has one right now and I have one now too. I always thought they were caused by a virus of some sort. I'm assuming it's related to why they are both having trouble right now. But I am the one who failed to get her swabbed last week at the doctor. Susan

Oh I am so sorry. This is so stressful! did the neuro really say things were never going to get better? That is a horrible thing to say. I hope you feel better soon and that your ds does too and does not get strep. susan

Hi! My 6 yr old is super taste sensitive too. I have not heard of these straws before but I'll check them out too. I ran across this product this morning and thought I'd post a link. I think these products look interesting. I wonder how they taste.....? https://shop.bodyecology.com/products.asp?dept=1009 susan

Well, I wonder about it. Since they have only had strep a few times in the past years. I need to get a record of dates from the doctor. But they continue to go up and down even without a strep diagnosis. But granted, I am so new to all this and don't have a diagnosis yet.

Thank you for your replies and advice about where to get swabbed.... I think I have read this on this site, but I wanted to clarify... do you think that if your dd is exposed to strep, but does not get it, that just being exposed will cause her to have symptoms? If so, this will explain a lot for me. Susan

What is a steriod burst? Also, our peditrician has given me a perscription for zithromax for my 6 yr old to take for 5 days to see if it will help her symptoms. I still have not heard back from the neurologist regarding her test results. Is a 5 day pac enough to see a difference in her behavior? It is 200 mg (1 tsp first day then .5 for 4 days) She was completely out of control during the doctor's visit. That helped him be willing to try the antibiotics before hearing the test results. Based on their symptoms, he believes that PANDAS is a possibility. He did not swab my 7 yr old for strep. I was totally overwhelmed at the appt that I could not even fight for it. I decided to just wait and see what happens with her. I got a note that she is doing very well in school right now so I am happy for her. She seems to be doing a little better at home too but still fighting something. We may not get to see the neuro for 3+ months. Susan

Oh yes, we've done the OAT. She's had horrible yeast problems and has been on antifungal in the past. Her last OAT did not grow (they say that happens sometimes, just luck of the draw). But she is on probiotics and caprylic acid to help control her yeast now. Although I figure we still have more to control. She had chronic sinus and ear infections as a younger child and was always on antibiotics it seemed. She is allergic to dairy so I have been reading up on the coconut or goats milk kefir, interesting..... Susan

Pat, so glad you have seen such great improvement with Kefir! I think I will check it out too. My 7 yr old had horrble itching as you describe and her's was much improved by going gluten free. Your post caught my eye though because of the symptoms you describe... "but she eventually started having behavioral problems again and a lot of itching, rages, inappropriate laughing, seeing dots, spots and so on." I'm interested in hearing more of your daughter's symptoms since they sound so similar to my dd who I am working on getting tested for pandas. She is highly emotional right now with inappropriate laughing too and she says she sees dots, snowflakes and flashes of light. This is new for us. Susan

My children are on gluten free diets, one because she is highly gluten intolerant and the other as a trial to see if it would help even though her test results were negative. She has been greatly helped by going gluten free. I have read that gluten causes inflamation in the body even if you are not gluten intolerent or allergic. I imagine that might help with symptoms for PANDAS patients if true. Anyway, I just thought I'd mention what I've heard. Susan

Thanks for the documentation suggestion. I was able to get some dates of the last episode. I think her doc will do the test. He's good but I don't know if he knows about PANDAS yet. I have a call into the office and am waiting to hear back. 27-Jan "fliped out" at school 29-Jan Saw Dr. to discuss - got sister swabbed for vag. Strep - positive. Due to similar symptoms, she was treated too 30-Jan Started penicillin as well as calming supplements. Good improvement 5-Mar Received note from teacher that her behavior was getting better and she was having more good days than bad 25-Mar Rapid Strep culture negative. Flu B culture positive. Took Tamilfu. After 4 days started acting like she had tics or tourettes. Stopped Tamiflu! 2-May Starting to downward spiral after a really great period of time. Complaining of sore throat, headache, dizzy and flashes of light and green snowflake shapes in vision To be continued.....

My 7 year old has ADHD behavior and I have her on all sorts of calming supplements (Magnesium, L-Theanine, GABA and Attend products). They help calm her behavior alot. She has sensory issues and is basically hyperactive. These past 2 days things have been building for her and she has had less success in staying calm and in control. Yesterday she came home saying she had a headache, was seeing flashes of light and green snowflakes in her eyes, felt dizzy and had a SORE THROAT. She is emotional and reactive in a way she has not been for a while. She definately has the ups and downs more than her sister (who is the one being evaluated for PANDAS). Last night she was crying and asking why she was so afraid all the time, why she had to have a bed railing to feel safe, why she was afraid someone would come in the house and grab her. A few months ago, maybe around the time she was treated for the vag. strep with her sister, she freaked out in class, running around laughing, refusing to do anything the teacher said. It was horrible. I know what you are thinking because now I am too..... PANDAS. I'm pretty freaked. I can't get her into see the neurologist for probably 3 months. What would you suggest I do? Take her to the pedi and get a strep swab? She does not have a fever at this point. Thank you for your support. I can only imagine what you have all gone through. I'm sure people will think I'm nuts. Thank goodness for our neuro. But what if the tests are normal. Now will I be happy or just more confused? Susan

Us too.... She has a history of yeast problems since very young. So whenever she gets something strange going on there I assume yeast. The first time, it was a little different though, watery discharge, started wetting the bed and then an icky yellow discharge. Our Pedi swabbed her and said it was strep. The next time, it was exactly the same way and I had a full dose of penicillin left over so I just treated her. That was in February and then March (I think) of this year. Susan

I was requested to post the name of our neurologist but realized after that maybe I should put it in it's own thread. I live in Charlotte, NC. He is located in Concord, NC about 30 min away from N. Charlotte. His name is Dr. Corbier and he is a pediatric neurologist. He was recommended to me by my pediatrician who is a Dan! doctor and is the #1 recommended Neuro by their office to work with kids like my dd. I mentioned the 2 recurring vag. strep my dd had "just in case it was important" and he thought of PANDAS right away. Susan