Malke

I'm not sure an all-in-one vitamin would be enough. Do you have anyone to help sort that out for your specific situation? Our DAN suggested, based on dd's results (similar to your son's), the supernuthera multi which has added B vitamins, a seperate calcium chew and a magnesium powder, all from Kirkman's (dd does not swallow pills). I give dd two adult scoops of the Custom Probiotics daily, for a total of about 400billion CFUS daily. DD was on abx for two month when we thought it really was PANDAS and she had no yeast issues thanks to the high doses. We essentially fought her gut yeast this way since last July, to very good results, but we also monitored overall sugars intake -- some fruits, some carbs, but not a lot of 'treats' and also made sure she had protein with every meal. You probably know this, but if you increase probiotics, do it slowly -- if he has a yeast issue you don't want to create massive die-off discomfort. Depending on how high his yeast marker was you may need more than just probiotics to get rid of it. We did some GSE (grapefruit seed extract) -- it is high in phenols, but based on your OAT results it sounds like he could handle it. Also, if something is not marked Low or High in the results, then I think you're okay. Have you had a chance to call the Great Plains folks? And, have you done any testing for delayed food allergies? I wish we had done our IgE/IgG panel sooner. best, Malke

Hi Suzanne-- Do you have a DAN to talk to about this? I found this link to be helpful in reading both our OAT test results: http://www.greatplainslaboratory.com/home/eng/Clinical%20Significance%20of%20the%20OAT.pdf Also, I think you can call Great Plains and go over the results with someone. Aribinose is a marker for yeast. You'll need to start or increase probiotics. We get ours (all their stuff is strep strain free, I believe) from Custom Probiotics. It's a fabulous product. Low Vit C indicates a stress response in the body, and that the body needs more. DD is 41 lbs and gets 2000 mg a day. It's good to work up to that dose little by little. high Phosphoric probably means your son needs calcium PRONTO -- that his body is leaching calcium out of his bones. My daughter also had very, very high levels in this category and adding calcium chews from Kirkman's really helped. We made the mistake of not adding magnesium with it which is one of the reasons she developed her facial tics. Kirkman's makes a good magnesium citrate. Things have improved since I added the mag. My daughter's High Quinolinic/5-HIAA ratio was caused by too much supplemental Tryptophan, but look at the link I sent you to find the other reasons. We took her off Tryptophan and things improved. I'm not an expert, but in my daughter's case (with some similar results to your son's, plus about 10 other abnormal results) the big picture pointed to nutritional deficiency caused by gut dysbiosis/yeast. At the time of our first OAT in July 2010 we had been off gluten, casein, soy, corn and yeast for about five months. Once we started addressing the yeast issue and adding high quality nutritional supplements, things really started to improve for us. In fact, dd's PANDAS symptoms have actually turned out to be severe food allergies which can also present as a neuropathy. We went to an integrative doctor and he showed me a list of how non-typical, delayed food allergies can affect different systems in the body depending on genetics. One system is the neurological system and the list of symptoms looked EXACTLY like the PANDAS list. He ordered an IgE/IgG4 blood panel for 190 foods. Working with the results under his direction we have really started to see some great improvement and healing in my daughter. Good luck. Feel free to e-mail me or message me if you have any questions at all! All the best, Malke

Oh, one more thing. I, too, had the question about boosting an already overactive immune system and our integrative doc says you have to be very careful about supplements like echinacea, that the body can come to rely on them. He says that it's possible to use them periodically, but not on a regular basis.

Our new integrative D.O. speaks to non-typical allergies (which can cause an autoimmune reaction in the body in various organs, depending on genetics) in this way (different analogy, but essentially the same thing). For us allergies are presenting neurologically, very similar to PANDAS, and not like the typical sneezy/wheezy/life threatening ones. As I work to remove and/or rotate allergy foods (identified from a combined IgE/IgG4 food panel) and take into account 'total allergen load' (chemical, pollen, viral, food, life stress, etc.) I have to make sure the 'bucket' doesn't overflow because of any one thing. I don't know how long it'll take before we have to stop managing this condition, but in the last month of without eggs or mustard in dd's diet (both aparently life-long allergens for her based on test results) things have really improved. I will continue to rotate other foods, then perhaps her body can start to heal. Our D.O. says that if we focus on the food issues for 3 months we'll see about as much improvement with this approach as we will ever see. I'm also starting Lysine and a couple more anti-virals now as well, to try and take a little more stress out of the body. That's my 2 cents

My first thought was yeast, as well.

Hey Quinny, Hang in there! Sometimes things have to get worse before they get better, and it sounds like you're on the right path. The fact that you say you hate living as you are is GREAT because it means you have the personal conviction and energy inside of you to beat the PANDAS, the lyme, and whatever else. My daughter is almost six and when she says she hates something about what's going on it makes me feel hopeful, because I know she's still present, her 'self' is still inside, no matter what. Keep your healthy, happy self right in the center of your mind every day, and you'll be there before you know it. Also, do you keep a log or a rating for symptoms every day? Many parents here do it for their kids and it is really helpful to get perspective...I look back and see how much things have improved, or remind myself that we really did have some great days back in March, even though it's all felt really intense and unhappy. The mind is tricky, even if you are tracking PANDAS/lyme/whatever from the outside like parents are. Take care, and hang on! Malke

How long did your daughter's rash last? Did the same type of rash come and go over a certain period of time? Thanks.

If you read Dr. Doris Rapp's book "Is this Your Child?" she helps make sense of non-typical allergy reactions to both food and environmental triggers, like chemicals in the pool. Sometimes these non-typical allergy reactions can present as a neuropathy, similar to PANDAS symptoms. Our daughter had really intense reactions this summer after swimming in an outdoor pool, sometimes hour-long rages, but things improved when we rinsed her off before hand and soaped her down in the showers right after. I kept thinking that it wasn't so much the chlorine but all the other things in the water -- no one really follows the rules about rinsing down before getting in, and everyone's wearing sunscreen, creams, shampoos, all made with chemicals. My daughter often had water in her mouth too. Yuck. We were happy to finally find a local freshwater lake beach and had a much better time.

That's such great news!!! (love the dancing banana!

absolutely yes! Do you suspect Lyme? we do now have a dedicated Lyme forum here http://www.latitudes.org/forums/index.php?showforum=19 I think a LLMD is our next stop. Considering we have neighborhood deer numbering in the 20's, who also hang out in our yard, I think it would be worth checking out, even though when we started abx she only got better, no herxing. Hmmm...I think it'd be a good thing to rule out, though. She's two days off garlic and one off mustard (newly documented IgG allergy for mustard) and I think I've seen some improvements. It seems to go good day/bad day/good day/bad day though, so I'm still watching and recording. Thanks for your help!

If it's food related, I think it's something I haven't found yet, but I'm still looking/experimenting. We are free of artificial additives. Pretty much 100% whole and lightly processed foods. There is some family history of tics, but limited. I originally thought all this was PANDAS, but we have no clear infetious trigger, no known strep event except for me getting sick last Jan (2010) and using an probiotic for 6 months with a strep strain in it. Her titers showed no evidence of recent or past infection for Strep, but I know this doesn't always mean that strep is not involved. Her CBC and other blood chemistry shows everything 'normal' in that regard, and no thyroid issues. Can chronic lyme cause tics? Thanks for your thoughts.

How much is too much? She doesn't use computer or play video games. The only time she has is during her Quiet Time when she watches videos, but usually she's drawing or making something at the same time or dancing along.

Thanks Chris, Actually, casein is the milk protein, so it's in milk and cheese and also even in things that don't seem like dairy -- it was in her soy cheese, for example (go figure). I'm thinking I'll just try to be patient and if things don't change in the next two weeks I'll dig into it again. It's hard to be patient.... ;-) Malke

Hi, DD5 has been suffering from a host of neuropsych symptoms since November and things are improving with attention to inflammation (Enhansa, Ibuprophen). We're still not clear about the trigger. Unfortunately, the only thing that has not improved and that has actually worsened are her facial tics. I have been documenting food/behaviors/tics for over two weeks now and see no correlation to when the tics calm down or when they flare. DD has been off gluten, casein, soy, corn and yeast for 13 months. She never had a tic before this last November. She's been off eggs for two weeks. I took her off chocolate a week ago. I upped her magnesium a couple weeks ago to 400mg/day (divided doses). I've recently pulled garlic, onion and mustard but it is too soon to tell. My question is -- how long do I have to wait to see improvements if I pull a food? A week? Two weeks? thanks, Malke

My daughter's biggest issue is around emotional outbursts and really rude language, not just potty mouth. I often tell her that I can tell which are her hard days and which are not, and that there are days when I *know* she can use her big kid voice to ask for things, or talk to me politely, or phrase things as a request, etc. I tell her that there are some days I just *know* the 'flamey-wameys' (her term) are taking over and that I let things slide on those days. BUT, on the days that she's clear but still behaving like she's not, I remind her that she's fine today and remind her of my expectations. I don't know about you or your son, but for my dd things wax and wane from day to day or week to week. When things are that unpredictable it's confusing and hard to set consistent rules for my 'sick' kid, but I try my hardest to make sure she's treated as a 'well' kid whenever possible. I hope this helps in some way, Malke

Thanks Chris! Yes, we're on a DAN protocol to address nutritional deficiencies uncovered by an Organic Acids Test (OAT) as well as the yeast picture it gave us. As part of that is a great multi with extra B6 called SuperNuThera. Kirkman's Laboratories has a great line of non-allergenic supplements. We have not done any non-food allergy testing. Our new Integrative D.O. seems to think ss present very much as a 'typical' food allergies kid. So, there very well may be more food we haven't yet uncovered -- we did an blood draw for an IgE/IgA test but it'll be a few weeks before we find out...feeling impatient right now, lol! I keep wondering if there's any new food I've introduced without realizing it. It's likely that the food we started feeding her regularly while her gut was healing may be causing trouble now that we're seeing with the tic and the PANDAS-like symptoms. It could be even the most benign thing like rice, which she has every day, that has turned into an allergen now. I can imagine a rotation diet in our future (4 days on certain foods and then time off those foods)...uck. But, you know, if it brings relief and, most importantly, HEALING for my daughter, than it'll be worth it. Thanks for your thoughts -- that's why I like these forums, it's a great way to think things through. Malke

Samra, Have you been over to the ACN PANDAS forum to ask this question? I'll give you what I know, but you may want to see what other people say as well. Did your son get antibotics for his strep? Does he have any other symptoms? Has he had a sharp rise in OCD issues, is he spacey or hyper all of a sudden, does he seem defiant or have rages over small things? Since you have a documented case of strep, it's likely that there is PANDAS involved and I personally wouldn't wait around to see if the tics went away. Go to http://www.webpediatrics.com/pandas.html or http://www.pandasresourcenetwork.org/home.html and see if this looks like your kid. My dd had all sorts of PANDAS-like symptoms that have all improved on abx and ibuprophen -- all except her tic. So, if your son only has a tic, perhaps it's something else? However, like I said, since you have a clear strep event where things got worse, then my opinion is to definitely look into PANDAS. I hope this is helpful, and please do go over to the PANDAS forum and see what the others have to say. Best, Malke

Hi, I'm visiting from the PANDAS board. One of the reasons we suspected PANDAS this January is that dd5 developed a tic, out of nowhere. It started with opening her mouth, licking her lips and then progressed to chin to chest, stretching neck, a couple lip contortion variations, and clacking her teeth a couple times. Since we don't have an obvious strep event to point to we're not 100% sure it's PANDAS, but to me its obviously an neurological autoimmune issue of some sort. I've read through some of the information for newcomers on this forum and I still need your help. Over a year ago (pre tic) to address some sensory issues I started dd on a diet free of gluten, soy, casein, corn and yeast and then started addressing yeast issues in the gut with the help of a DAN in July 2010. We've been doing all the things that have been suggested on this board in terms of diets and supplements. We're still assuming PANDAS right now, even though we don't have a clear strep event to point to. DD is on 200mg Azithromicin per day as well as 2 doses of Ibuprophen, and we are working up to a full dose of Enhansa and have seen only improvements on this supplement. We also just started working with an integrative D.O. who ordered some allergy tests (a combined IgA and IgE -- I can't explain why there was no IgG). I'm wondering if there is anything else I should be looking into? I want to be clear that the tic started before the abx or any new supplements. I thought maybe her issues were yeast related when they started to snowball in December, but then we got a follow-up OAT done in January and it showed great improvements with the yeast issue and with her gut in general. So, I'm pretty sure the tic is not yeast related. Any thoughts or resources or next steps would be greatly appreciated. Gratefully, Malke

It's funny, but I had a realization about our structured daily schedule for dd5 just last week. For the last 5 1/2 years everything had to be ultra predictable due to her intense regulation issues. During the month or two before we realized it was PANDAS we stuck to our routines like glue, but it just made everything worse. Luckily, we decided to just go with the flow and it eased things a little. Recently I realized that now I'm in the business of 'unregulating' my dd, lol! If I switch up her routine even just a little, or do something unexpected (like add humour, which I could never do before) things go much easier and she is distracted from from her 'normal' bedtime routines. Of course, it doesn't work in the middle of the night, but keeping us a little *out* of routine during the day seems to be a good strategy. I'm in the business of flexibility now after so many years of structure.

This is fabulous. Thanks for sharing this part of your story. In my early mommy years I kept wondering what it was that I was doing wrong with my dd, why she couldn't hang out at parties without loosing it, or had to have a completely predictable schedule in her day to be semi-functional, or never could sleep on her own, or would never leave my side. I had tons of doubts about my parenting (first time mom). As I started healing her sensory issues over the last year, I became a lot more sure of myself, trusting myself more, and by the time the PANDAS (or whatever it is) came along I hit the ground running, knowing for sure that something was really wrong and I just had to find out what it was and what needed to be done. No one around me has ever had to deal with stuff like this with their kids. I can be pretty intense anyhow, so this uptick in my intensity is why I think they're worried. I need their support, so it's been devastating to have trusted friends think something wrong with me or my judgement. I've struggled with depression most of my adult life, but since having my daughter I've climbed out of it, first for her sake and then for my own. So, I know what I feel like and how I act when I am 'not right' in my head. This is not one of those times. Thanks for sharing what your LLMD said to you -- it's strengthened my resolve to keep moving forward. Also, I've felt compelled to try to convince the 'doubters' as best I can -- I don't think I'll use my energy that way anymore.

I've been like this too the last six weeks or so. I've felt alternately focused and clear and then completely grieving over the 'overnight' change in my daughter and then madder than I've ever been, which gets me focused again, and around it goes. And, I understand how hard it is to make nice conversation when my head is so full of my daughter and our next steps and plans, etc. ((Hugs))

I feel better already!

In the last six weeks since everything went to **** in a handbasket, I've had friends tell me that they are worried about me and my mental health, that I'm taking on too much, that it's all just normal kid stuff, that dd will 'grow out of it.' Over the last year I've been working tirelessly to resolve dd5's sensory & regulation issues (she's had 'em since birth) and have been quite successful. I suppose sharing the news of PANDAS and/or other autoimmune disorder or whatever is happening right now (still trying to figure it all out) is just making me seem like an over-involved, over-worried mother, but frankly -- when OCD and anxiety skyrocket and a tic appears out of nowhere and a child starts raging over nothing, can't leave my side even in our own home, and stares out into space with no volition (when normally a bright eyed child) one has to worry, right? What I *want* to tell them is: This is not a case of bad, over-involved or over-reactive parenting folks. I've got hundreds of pages of daily notes documenting symptoms, and my husband is witness to the worst that happens at night and on the weekends, so I'm not making it up. I wouldn't wish any of this on anyone...and there are much better things I'd rather be doing with my time. What I *want* to tell them is: Even though doctors haven't helped much yet, the three that we've seen in the last month have all taken me seriously, listened and responded as best they could to my concerns and helped us move further down the road. What I *want* to tell them is: This is a real problem with a different roadmap for each kid and I'm the cartographer. Yes, I'm mad and I know I will get over it at some point, but it's this emotion that is pushing us further toward answers every day. I try not to be mad at them b/c I suppose they think they're being supportive. But just because they don't see the worst doesn't mean it's not there. I needed to put this out somewhere so I could stop thinking about it. Thanks.

Thanks for your thoughts. I was just talking with dd5 about why I am more patient with her yelling and outbursts on some days and not on others. She's young but still very aware that my expectations are different on different days. It helps to explain the gray areas (some days I know is just really hard for her, other days I can tell she can use her 'big girl' brain to find words to express herself) and I think our discussions help. The unpredictability of all this is hard on both the parent and the child I think, at least in our case.

Do you mind me asking why a loosing a tooth affects things? My dd has one loose and 18 more to go...