Suzan

I'm very interested in hearing any results you have with amino acid testing as my dd8 also gets the red rash you talk about with viruses and ramps up with pandas symptoms even if not strep. Our doc (who is a Dan! doc) put her on Valtrex for 6 months and then I guess we may retest or re-evaluate. We took a 1 month break while trying to get the generic and I can tell a difference in her behavior (for the better) when she is on it. For us, it really helps. It was our ped. neurologist who did the herpes tests. He said neurological issues were very common with those viruses if your body does not process them correctly. Susan

Just as a side note, my dd's get cold sores a lot too. My dd8 has been tested for herpes viruses and had high titers to hhv6. The doc put her on valtrex antiviral meds and she does not seem to get cold sores any longer. My dd7 is still getting them from time to time but we have not tested her yet for the herpes virus. Your amino acid questions are interesting and thought provoking but I don't have any knowledge about it unfortunately! Susan

I'm glad you had that moment of seeing it and that it has made her feel better about herself! My dd felt that way too when she found out about pandas and new she was not crazy and that everything she was going through was real. Have you had her titers run to see if they are elevated? It's a place to start anyway although it didn't help us as my girls don't mount a titer response to strep. My dd8 does not do the same cheating worry but she talks about other people cheating a lot. She talks a lot about rules that other people can break and how horrible it is and tries to ensure she does not break any of the rules. This goes for smoking, drinking, stealing, drugs, speeding.... too bad it doesn't seem to apply to talking when you aren't supposed to in class or leaving your junk around the house She does have the homework issue, wanting to do it herself but wanting my help. I often hear "I want to do it myself, help me, no, don't help me, help me". I wonder now if it has to do with a cheating concept. I'll have to look into that. Good luck with it all!! Susan

My dd7 had mitocontrial markers when we went through extensive testing starting in 2007 or 2008 while I was trying to figure out what was wrong with her. She took CoQ10 and levocarnitine for a long time. I wonder at times if we should start them up again. They did really help at the time. Once she was on a dose of levocarnitine that was too high and it started making her smell like fish. That was our tell tale sign to reduce the dose. Once she got off all seizure meds, was gluten free and treated for strep, we slowly got her off all her supplements. But I would like to have her mito marker tests re-done to see how she's doing now. susan

Oh, I'm sorry about that one! That would totally freak my girls out too. I managed to step in soon enough with our old immunologist to say "let's not use the "freak out" (as he called it) about dustmites with my pandas kid!" She still thinks dust is just dust. I hope you guys don't get it and pretty smart about sending all those notes home sealed in the future! Susan

Hello. I am so glad you have such a great doc who is up on these things and recognized it early. My girls have had it probably since 16 months and 12 months old but were not diagnosed until last year at 6 and 7 years old. Good luck with everything and I hope early detection will be the key for you. Hopefully at the very least he will stay on some antibiotics to keep the strep away! susan

I am going to bring this up with my doctors this month and see what they say. If I get any good info, I will let you know. Also, I'm goign to try to take advil 3x a day for a while to see if I see an improvement. Susan

That reminded me that I could not sing to my daughters for years. They could not stand the "noise" and I'm not THAT bad of a singer Still to this day my dd6 will often tell me to stop if I try to sing. Susan

My girls have both had noise sensitivity as part of their sensory issues related to PANDAS. You could find them holding their ears at strange times. If I raise my voice at them it physically hurts their ears. Things like emergency vehicle sirens, motorcycles and unidentified or sudden noises are very bothersome to them. I've got it pretty badly too and I think I got it from the same strep that messed my girls up. I am very sensitive to the TV noise, the sound of dishes dropping and especially to a tone of voice that my girls use (especially dd8) that is very painful on my ears. It's really awful! Susan

I did get that word yesterday and I did remove her name from the consolidated list by state. Susan

I like Chia Seeds for Omega 3 as long as you can be creative on how to use them. Basically you can add them into anything an dthey add all kinds of great things to your diet. http://www.drweil.com/drw/u/QAA365093/Chia-for-Health.html Also, Coromega has a orange "pudding" that one of my dd's likes. Gluten free is expensive but depending on where you live there are options for less expensive. I like Trader Joes and some Super WalMarts (if you shop there I know some are anti-walmart) now have a nice gluten free section that have pretty good prices. Search Amazon.com too for good deals on stuff after you find what you like. Good luck with the diet. We found it made a huge difference in behavior at our house but both my girls test gluten intolerant. Susan

Wow! I can't wait to show dd8 tomorrow. She is going to love it! Susan

I am so sorry that this has thrown a wrench in your thoughts about your son. I know that you are looking for answers so hearing that it is not pandas can only be overwhelming and emotional. From your description it does sound pandas like though..... I know that Dr. Latimer is very respected in the field, however, do you feel a second opinion would be warranted? Do you have a sense that she is right or do you still have instincts that it may be pandas? I'm sorry I can't remember what you have done so far and whether you had the Cunningham test done, I'll have to go back and read your other posts again. I hope the neurologist can give you some information. My dd7 had a seizure disorder and getting them under control did make a big difference in her outcome. Good luck and hang in there. Susan

Our lab requires that it goes through the doctor. I'm going to PM you..... Susan

She's having her start allegra and nasacort. I have not filled the prescriptions yet but did start her back on zyrtec yesterday to get us through until I get the meds. I really need to get hardwoods put in our bedrooms but I have no money!! Susan

I took dd7 to our immunologist today to get established as a patient in the event that her pandas gets worse. She's in a pretty good place right now, not perfect but managing well. Before antibiotics her symptoms were primarily hoarding, food restriction, age regression and non-verbal but zithromax pretty much makes them go away and her OCD is managable. I had to take her off her allergy meds a week ago so she could get skin tested today. She was only allergic to dust mites but it was a fairly severe reaction. So, she starts new meds today and we are thinking about allergy shots. I don't seem to be as concerned about allergy shots for her as I am for her sister because she does not seem to react to other colds, flu, etc as her sister does. But, since I took her off her allergy meds, she's been a wreck this week. She's been angry, mocking, hitting, more selfish than usual, screaming. It will be interesting to see if she improves once back on the allergy meds. If so, I'd say that's confirmed for us that allergies do trigger her. Our immunologist will review her history and maybe we will have more info on her but I don't expect to learn too much more I guess. Susan

So far, zithromax daily is helping our symptoms and allergy medications. dd8 is also on valtrex since she had a high herpes titer (hhv6). I think dd8 will be on an IVIG path eventually. I know what you mean about so many doctors and so many tests. It takes me forever to pull together our medical history! susan

Dr. T said no steroids for my girls as they fit into his PANDAS 2 category and are not mounting good immune responses so he does not want to suppress their immune system. Have you had any immune testing done (IgG and subclasses, IgA, IgM, strep. pneumo titers)? Susan

LOL, I thought about it if that helps Susan

I finally have a response for you about Dr. McMillian but your inbox is full......

Based on our experiences, I would suggest that it is a food allergy or intollerance. My dd8 had bad skin on the outside (dry, eczema, rashes, etc.). But even when her skin looked fine she was always itchy, even at night when she was sleeping and she would scratch deeply like you describe. When we went gluten free, her skin cleared up and her itchies went away. She stopped scratching all the time and even at night. I have a wheat allergy and before I went wheat free, I had itchy underarms that itched so bad and deep but if I scratched them I would get a huge histimine reaction so I could not scratch it and also a rash that I would get 3 times a year that I told the doctor was coming from inside even though he said it was contact dermatitis. I was sure it was coming from within because I could feel it coming out and spreading everywhere. I have not gotten that rash in 1 year since going wheat free. Other than that, we have not had anything that I thought was related directly to ocd that I can relate anyway. Susan

Thanks Michael and good luck with your new treatment plan! I looked for this post again tonight because I am really thinking that the strep that messed up my girls messed me up a little too. I am realizing that my sensitivity to noise is very bad and sensitivity to too much activity too close to me, clutter and lack of organization making me feel panicked and maybe some mild OCD. I have started treating myself for candida as I have had trouble with that in the past and I'm thinking some of the supplements you mention may be worth a try hfor myself. I am finding it increasingly hard to handle my daughter, even though she is doing much better. Maybe the temporary peace and quiet made me lose my patience somewhere but I really think I'm not feeling well. This post is a good reminder to me to be sure to tell my hormone doctor that I see what is going on as maybe something else I take is making things worse or maybe he has some supplements to help as well. Susan

Oh yeah, I know that strep smell. When my girls used to get strep in their throats I could smell it and always knew when they had it before I even got them swabbed. I always thought it smelled like a hospital. That was the only way I knew how to describe it. Did your doc culture it? Glad he treated even with a negative rapid. Susan

Interesting! I am anxious to find out. I was very surprised when our Dan! had us try allergy meds and very surprised when they helped her behavior. Susan

I'm confused about things. I figured I'd come here and write some stuff down and see if that helps. DD8 had her second allergy shot on Monday. We kept it the same dosage to take it slow and she how she does. She actually seems better this week than last week. She didn't have as much itchiness and her state of mind is a little better than last week. But about her state of mind. PANDAS, Candida, Herpes titers, allergies, lyme, just sensitive child by nature (?) . I'm getting so confused about what to treat, what is causing the emotional problems, are we on the right track.... DD7 is going for her allergy and immune testing on Monday. She's on increased abx and she's been following me around the house not able to stay anywhere alone again and she cried out of control 4 times today about stuff and she's reacting to things differently, more explosive. PANDAS, Candida, allergies (I had to stop her allergy meds for her tests on Monday. She does not have allergy symptoms but she seems to do so much better while on allergy meds). But she's eating new foods and stuff like stew where everything is mixed together (she's never done that). I'm not complaining because things are much better right now on the abx. I guess I'm just confused about what reactions I am seeing and what is causing them and what to do about it to make sure I'm doing all I can. I don't want to avoid IVIG if what I am seeing is pandas and the abx aren't doing what they should but how would I know? Maybe it's all from the allergy shots with dd8 but in reality, I saw this stuff since I reduced her antibiotics in December and she's never been back up to how great she was then. So, confused ramblings... thanks for listening. Any insights? Susan