pixiesmommy

I don't know if I can explain the PANDAS symptoms that are still present. A lot of them are probably more "learned" at this point than actually triggered by infection; however, when we have an infection, we do see an increase. Here are a few that come to mind: -sensory processing issues -extreme exhaustion, easy fatigue -aches and pains, and not processing pain properly -headaches that seem to coincide with exposure to strep/viruses -cold sores in the mouth -sore/raw inside of nose -clumsiness/lack of coordination -mild tics in hands/eyes -VERY easily frustrated -still needs rather strict routines and "hand holding" through unfamiliar territory -memory issues, along with some... not sure if it's lying or just forgetfulness or...? (we called this manipulation when she was initially diagnosed with bipolar, and then the neuro thought it may be seizures, but it is neither) -eye issues - repeatedly fails visual field tests but there is nothing physically wrong with eyes as far as neuro and opth. can tell -some regression in handwriting, baby talk, etc occasionally that is not for play or intentional I have no idea why the would leave adenoids- very weird, if you ask me. Yes, EAmom- I was thinking the same thing about the abx! Melatonin- I read a link that was posted on the board linking lack of melatonin to Lyme. I don't have any further info, but it is definitely intriguing! I assume we will start with me for the Lyme tests- you are right in that it makes the most sense. Most of the doctors who are .. ahem.. intelligent... about autoimmune disease will ask a lot of questions about MY history as well as Pixie's, because of exactly that genetic pathway. *We have emailed ILADS and called the LLMD number and can get no response from either. We'll keep trying, but I'm already frustrated! Why can't someone just pick up a stinking phone when you need them to!? I'm dying for the titers to come back and might try to call Dr K tomorrow. The lab said it would be 2 days, but he said give it a week. I'm terribly impatient and want to get started with treatment if we have a carrier. I wonder how they determine who is the carrier if we are all high titers? I'm still slack in figuring out the technical/lab side of things....

He was just dismissive- not about the IgeneX test in specific, but about Lyme having anything to do with PANDAS symptoms in general. The feeling I got from him was that since IVIG had clearly worked to eliminated 95% of her PANDAS symptoms (his figure, not mine) then there was no reason to go searching any deeper, since clearly PANDAS is THE answer and we have received an effective treatment. On one hand, I agree with him. Yes, we absolutely have seen amazing positive results from the IVIG, however, if there is something else lingering that can be tested for and treated, in order to bring her 100% back, then I don't understand why NOT to do it. The testing does no harm, and it has a specific goal in mind (ie- I'm not just running a gazillion blood tests in hope of finding a random answer and putting her through a potentially unnecessary medical ###### to do so.) My opinion is that Dr K is a phenomenal PANDAS dr. PANDAS is what he diagnoses and treats- but that is the. end. of. story. I am the parent, the one who lives with the child, and while I am thankful every day for Dr K and all of the help and guidance he has given us, I am still going to pursue the things that he may not think are necessary or helpful, like NRT, chiropractic, dietary changes, and additional diagnoses and treatments, if and when I feel they are warranted. This has nothing to do with my opinion of him as a PANDAS dr. If he didn't have that narrow focus, then he would not be able to treat as many children as effectively and efficiently as he does. I would never ever discourage anyone from seeking out treatment from him. However, like with any doctor, we are the parents and it is our job to question and continue to do the best we can for our kids. For me that does not end with IVIG and prophylactic abx. Again, Lyme for us would explain so much- like why I have had so many rheumatic symptoms from such a young age, why DH started having similar symptoms when we met, and of course, the PANDAS symptoms that haven't completely cleared. The link to melatonin intrigues me, as I have an almost-3-yr-old daughter who is on melatonin because she cannot sleep without it, and is still up repeatedly during the night. So much in our family points to Lyme that I feel it would be foolish to let it drop. The next step is definitely the testing with a lyme specialist. As far as continuing the abx- I won't do it alone, like ordering illicit abx or anything. I may move her to olive leaf extract or something, but we will definitely stay in the care of some sort of doctor or team of doctors. We plan to continue with NRT, try to find a homeopath who will treat the entire family, potentially seek out a DAN! doctor, and definitely find a lyme doctor (as soon as possible.) We ran the ASOs/anti-Dnase B yesterday and Dr K said to call back in a week for those results. We'll treat whomever is the carrier, however best we are able, and hopefully he will give advice and work with our current family dr on that. We haven't ruled out going to an ENT to see if we have strep hiding out in sinuses, etc (Pixie has been checked previously and did not.) None of us but the toddler have tonsils, though all of us have adenoids other than DH. There is definitely a lot to think about. March is definitely a rough time for us, but again, Dr K said we would only cut ties until/unless there was a PANDAS flare and then he would re-evaluate treatment again. I have no doubt that he would prescribe abx for us again in March if we were in crisis.

That was very interesting, and strep was even mentioned at the end! Can you tell me where you found this and what credentials the writer has? DH is curious...

One year checkup today w/Dr K for our post-IVIG done once on Sept 10-11, 2009. He wrote Rx for bloodwork for all 4 of us for ASO/Anti-Dnase B titers, which we had done immediately after leaving his office. Said he does not believe there is a significant correlation b/t Lyme and PANDAS and in his exp. 2 of 400 patients have come back positive for Lyme, so no tests order from him on that front. (We will probably pursue IgeneX on our own just to put our minds at ease, since we did live in the south and had tick bites, so that is a real possibility and would explain a lot about my own health as well.) Keeping her on abx through Dec. to get past the current rampant strep season (2 in her class just today called in with strep!!) And then... we are on our own unless she exhibits significant PANDAS symptoms again.

Perfect! I know our chiro or chiro/NRT would sign for it. Posting an update in separate thread on visit today.

She is still doing well. This is just our one year post-ivig checkup. Thanks for the info. I thought that was the one IgeneX... I just remembered the Lyme board was there!- but wanted to be sure. Can't hurt to ask, though my impression is that he probably won't. Thanks!!!

Can someone tell me the specific test for Lyme that is the one giving the most accurate results? Has anyone had success with asking Dr K to run this/these test(s)?? Thanks!

I think it is ABSOLUTELY worth it to try. This may not be the popular opinion, but I'm going to say it anyway- it doesn't matter WHAT works, as long as something works. We had IVIG a year ago to the date today. Soon after IVIG, we started going to a Nutritional Response Therapist and Pixie began to improve. This was after we saw a lot of the "turning of the pages" start to wane. I don't know if IVIG or the NRT is responsible for the majority of her healing during that time. Also, a month or so later after seeing the NRT (this would have been in Feb) we started our diet of gluten-free, sugar-free, etc. and she improved even MORE. Would she have improved without these measures and just with the IVIG alone? Possibly. I will stop at NOTHING to help her. I love to chime in and be part of the informal studies, and even part of the ones like the Cunningham that are more formal, but it doesn't matter to me in the end what works- just that something does and that we can all have reasonably functional lives. The diet change we did was for the entire family and we have all seen such positive significant results that I cannot discount that, and we would not go back to eating gluten or sugar for anything. It has healed my husband's sleep apnea, given me more energy and stopped my hair from falling out, cleared up some skin conditions, helped heal my youngest daughter's cavities... the list goes on and on and on. I have a child that last year could not tie her shoes, ride a bike, use a broom to sweep the floor, put her own shirt on half the time, go to school, and would bite and kick me all day long, sometimes screaming and raging for DAYS on end. I can't tell you the magical combo of what helped, but now I have a child- one short year later!!!- who has friends over for sleepovers and sometimes has 4 or 5 friends in the playroom after she attends school for FULL days and makes A's on her tests. She can tie her shoes, rides her bike all day if I will let her, read the entire Harry Potter series over the summer and had the attention and motivation to do so, and hasn't been aggressive in many many months. She's so UNafraid of the animals she used to be terrified of that she goes to horse therapy once a week and BEGS for more. Maybe it was 100% IVIG in her case, maybe it was just growing up a little bit, maybe it was the tilt of the earth, but whatever it was, I will be able to say at the end of each day that I did absolutely EVERYTHING I could think of to help her. If there is ANYTHING you can do that MIGHT help your child, why not do it? Within reason, of course, considering money and harm to the child. But going gluten-free is not going to give you a bad result. It is not going to UNDO anything that is working in your favor. DO IT!! www.chickiepea.wordpress.com to see our journey with food

I think it's because they think that "nothing can be done" and they don't want to throw out "big words" to scare patients or prompt them to ask questions that they have no answers to. A doctor says, "distonia" and the patient freaks out or parent freaks out. Most people go to doctors wanting cures, symptoms relieved, and then to put blind faith in the dr that he will wave his magic prescribing wand over them and all is well and good again. Those of us who actually have brains in our heads and want to delve into the hows and whys and labels and causes... well, that is just too much trouble for a 5 or 10 minute session, now isn't it? And we say we don't want to take the meds because we want to know the root cause before we cover it up with chemicals? Ha! You aren't alone in this, and that is the best comfort I have. I'm glad you actually have the records in hand and that you are still as young as you are, even though I know you must feel 90 sometimes- I certainly did at your age.

I definitely believe that, like a lot of PANDAS behaviors, it can start out as autoimmune/ocd-related and then become a learned behavior even after you are "cured" or "in remission" etc. I have only ever had mild trich (pulling split ends), as mine is more dermatillomania. I tend to get ingrown hairs on my arms and legs and will try to work the hairs out by squeezing, scratching, etc. This is not so much for pleasure or relief of stress, as it is relief of the pain that the ingrown hairs are causing. BUT it is considered OCD. I have also had such severe nail picking, particularly around my thumbs, that the cuticles were non-existent for the majority of my life, causing very deep ridges to form in my nails since there was such damage to the nail beds. ALL of these behaviors started for me around a two year period in my life, which is the SAME period of time that I also got braces (I know now that I have severe metal sensitivity), underwent oral surgery to have 4 teeth removed (chemicals, anesthesia, breach in BBB?) and I lost my great-grandmother who had essentially been a parent to me (so, severe depression/stress/anxiety.) THEN started the chronic fatigue, acute sinus infections, repeated allergic and anaphylactic reactions to abx that were given, struggle with severe depression, mono.... the list goes on and on. There is a lot of learning about ourselves and AHA! moments as we explore what might be going on with our children, for sure. SO much of it is inherited and so much of it has become "the norm" that it's often hard to see those things as symptoms or causes when it seems like it's just a part of who we are. I rarely nail pick now and never pull split ends. I didn't treat myself and only noticed a change after changing out diet. I know, I know- I put a LOT of emphasis on changing diet, but it has done SO much for us that I didn't even expect. I never felt an "itch" that I was aware of, before picking or pulling- I just always did it, more like a tic or fidget for me. But after going gluten, sugar, and corn-free (and I believe it was the corn more than anything) I no longer pick. I will notice doing it if I have eaten out or had something questionable, so it's easy to look at my hands and see how strictly we are following our dietary guidelines set for ourselves! I just find it fascinating because there is obviously a lot of truth to the BBB and to the gut-related aspect of the autoimmune system. If you follow our history, as adults, you can often see the things just unfolding in terms of - oh, I had this surgery and then this chronic symptom popped up, or I worked with this chemical and then this one popped up, I had this tooth issue.... and I started craving THIS food and this happened. But it's only clear in hindsight in this big, big overwhelming picture that takes so many twists and turns that it almost just folds in on itself and makes either perfect sense or gets so complicated that it makes none at all. Okay, I'm rambling now... My advice is to try going gluten-free, corn-free and processed-sugar-free (we use honey and that works for us) and see if you notice a change. If the meds you are on are making it worse, I would stop. The chemicals in the meds can be more aggravating and probably have some of the components of things (if food) that you are sensitive too- surely all meds have corn these days, as an example. Hope some of this helps. Happy to talk via PM as well.

Red dye (and later yellow) was the first harbinger of what was to come for us. It causes SEVERE and immediate (and prolonged) aggression in my daughter. We have done the Feingold diet with great success and are now able to eat some previously "trigger" foods (such as apples) post IVIG and since we have gone gluten- and sugar-free and are doing nutritional response therapy. I have a food blog too if you would like more info about the diet we have finally worked out that suits her best.

We used Dr Kovacevic (not on your list, but another biggie) in Oak Park, IL did our IVIG. He believes in abx for a year afterward.

We are struggling just to get our family dr to culture us now, and he told us last time we were in that basically we needed to find a new dr. He referred us to an ENT, but we have been down this road already, so are now essentially without a dr to run even a strep test on us. Dr K is local for us but won't treat or culture the family (or even Pixie for that matter) and says to find another dr for that- that he is only for prophylactic and IVIG. I'm at a loss. We read about everyone getting tests for Lyme and family ASO titers, etc and we can't even find someone to swab us??!! Ugh. I feel like we have hit a brick wall here- we can't get rid of strep in the family (and 4 days back at school and Pixie comes home- ALREADY!!- with a strep notice for her grade!) and we can't get anyone who cares why or how we are continuing to deal with this with NO symptoms. Pass it along to the next expert on the list, and then the expert says find a GP. ? Suggestions ??

Pixie, DH, and I all have our tonsils out. Mine and Pixie's taken out due to strep infections, but we still have constant strep. (DH due to apnea.) Anesthesia can cause more probs than just PANDAS flares- it can trigger Bipolar too if you are genetically predisposed, as well as a myriad of other ill effects because of the chemicals. Knowing what I know now, I would not have it done. Mine were removed when I was 23 and it took me 2 years to recover. I thought I had a constant sore throat BEFORE they were removed (they were cryptic as well), but I had SEVERE sore throats, weakness and extreme brain fog for 2 years after. I have a constant sore throat still, so it did nothing for me but prevent me from coughing up hunks of tonsils now and then. Yum.

Our whole family keeps coming up positive for strep with no symptoms other than Pixie's slight exacerbations and knee pain. We cannot get off of antibiotics long enough to get a test before she is already flaring again and we repeat the cycle. My family dr says it is rare that you can actually clear someone who is a carrier, but that it is probably me since I have a long history with strep. I'm not sure though because I am the one with the history, true, but I always (that I know of) had severe sore throat with strep and was able to tell when I had it. DH, on the other hand, has NO history with strep and comes up more strongly positive than anyone else in the family. That makes me think HE is the carrier, not me. It's confusing!

This is kind of complicated to explain, but Pixie's Nutritional Response Therapist is advocating that we go off the antibiotics so that her body can process the strep. According to her (and you may think this is a bunch of hooey, but we have seen really dramatic results since starting NRT, so I am inclined to believe...), there is a reason that her body "needs" strep. The antibiotics are functioning to only keep symptoms of PANDAS in check for us at this point, NOT to keep strep away (We had 4 infections raging through the entire family this summer with NO symptoms other than Pixie being the "canary" with leg pain and mood changes.) Her theory/science with what she does- and I hope I can explain this- is that the body will attract certain things to fill needs. For example, if you have mercury in your body, the body will attract yeast and those things will feed off of one another because they work well in concert. So her theory about strep is that there is something in the body that "needs" the strep to survive. If we can't harness the strep (so to speak) in order to eradicate it, then it will just continue to come back. The antibiotics are covering up the strep and the subsequent toxins that the strep is attracted to, and we can't find the "source" of the issue (not the strep, but the thing it's attracted to) until we get rid of the mask of abx. On one hand, I am terrified of doing this, especially at the start of the school year, considering the ###### we went through last year with everything. On the other hand, we are due for our 1 yr follow-up with Dr.K and I feel in my heart of hearts he is going to pull her from the antibiotics anyway, since he has alluded to it numerous times since IVIG. There is also the fact that I know the abx are just introducing more chemicals and things for her body to process and deal with and we know that she is chemically sensitive. We do get dye-free, but still. I have started NRT myself to see if it makes a difference with me, and I am hoping I will see a drastic difference in how I feel and that will reassure me that this is the way to go. I feel like if we are going to do this, I want to be prepared for the worst though!! A friend just referred us to Easter Seals, saying they have some great programs (free!!) and OT, etc. that would be great for us. We still have not been able to find an OT that would work with our insurance, so I am hoping to get in touch with them and see if we qualify for any services. We have been lucky to be able to let our safety nets drop a little in response to the remission we have enjoyed, but I know how quickly things can fall apart and how hard it is to get those nets back in place when in a period of crisis. Thoughts?

As most of you know, my family has started what is essentially an online food journal as we try to change how we eat to better support our immune systems as we deal with PANDAS and other autoimmune disorders. I have mentioned PANDAS on my blog, but really want to add a page fully explaining what it is and add helpful links to other sites (including this one, of course!) where parents can find help if they come across my page. I am feeling some guilt for not doing this from the start, but I am still learning the ins and outs of how to set up my page. We are getting up to 400 hits per day now, which is small potatoes in the grand scheme of the internet world, but I feel like that is 400 more people we could be reaching with crucial information about strep. People who have children, are grandparents or aunts and uncles, or babysit, etc. I want to make sure I am using the blog as a tool to educate and inform. So please spam me with links or blurbs that you find helpful. I know of a few of the Facebook pages, this site, Dr K's site, and pandasresourcenetwork. I'm sure I am missing a ton of info and links. Feel free to PM me or send me messages via Facebook as well. Here is the link to the blog: www.chickiepea.wordpress.com and Here is the link to my Facebook: http://www.facebook.com/home.php?#!/pages/Chickie-Peas-blog-Eating-for-Autoimmune-Health/259835828602?ref=ts I hope this is okay to post here, and if not, please let me know. I am not selling anything or making any profit from the blog whatsoever, so I don't feel like it is really "advertising," but if so, I understand. Thanks, Manda

I'm glad I saw this. I suffer from inflammation too and lately it has been extremely painful in all of my joints. I have been to dr after dr trying to get a diagnosis (sound familiar??) and am on the same diet that is helping Pixie, but I can't seem to link mine to food beyond a few specific things (sugar, gluten, corn) and am stumped. This might be a great help!! Thanks!

I hope you didn't think I was shooting your mom down for not being on the diet with you... just saying I think it's easier when everyone eats the same things because then you are all on the same page and kind of FORCED to come up with ideas for meals. It has brought us together as a family in different ways. I totally understand the non-cooking parents. Mine were the same way. I was basically making myself oodles of noodles suppers after school at 9 yrs old. Probably the best things you can do at this point are to learn to do some simple things. If you can even make the change from boxed dried potato flakes to an actual baked potato, then you are doing yourself a big favor because you're getting a whole food versus one that has had the nutrients processed out of it. How are you with fresh veggies? If you like ranch dressing, you could make some up yourself and cut up some veggies and have a pretty healthy snack or meal. As far as the Omega 6's, you are getting those probably without trying- any cheese that isn't grassfed, nuts, etc. will have the omega 6's. It's the Omega 3's you should seek out. Taking flax seed oil is a great start. The rule of thumb for good fats is to eat as many as you think you need, then eat 2 tablespoons more! Your brain needs lots of fat to function, and right now when it's "politically incorrect" to eat fats, we are all getting far less than we should. Hope this helps! Manda

Just wanted to add my 2c here and say that you do need to make sure you are getting enough protein, and that if you are using nuts for protein, then you need to counter-balance the Omega 6's with Omega 3's. You can do some research on this yourself too, but basically Omega 6s are inflammatory, which is great for healing if you have, say, a cut. Omega 3's are ANTI inflammatory. With PANDAS, you are already dealing with inflammation, and then to add a big dump of Omega 3's on top is adding fuel to the fire. Omega 3's can be found in things like wild-caught fish, fish-oil (be careful, some have mercury!), flax seeds (ground up and in the oil), dairy from grass-fed animals (cow, goat), and walnuts have the best ratio as far as nuts go. Manda

I haven't been around the board for awhile, but this thread caught my eye because we deal with this constantly. My daughter is almost 10 and we have made very drastic changes in our life that revolve around mostly diet for her. First we went dye-free and then to organic food, then to the Feingold diet (which is about removing salicylates or aspirin-mimicking substances from your diet) and now we have eliminated gluten, refined sugars, and most kinds of dairy. We do still eat meat, but she doesn't have a problem with it that we know of. I am proud that we did this as a family. If she can't eat something, neither do we. There have been less than a handful of times that we have "sneaked" a food after she is in bed or whatever, but it is really really rare. We share her diet because we want to support her, and it's not fair for us to have things in the house that she can't eat (and that stuff isn't good for anyone anyway! ) All of this to say, I'm sorry you aren't getting support for your diet in your own household! That really stinks. Stick to your diet though, if it is making a difference. I had a boyfriend in high-school whose sister was vegetarian because meat and meat products made her very ill like you describe. She was eating something once and got this panicked look that I will never forget and asked her mom if there was meat in it (it was at their house) and her mom kept reassuring her there wasn't. We went through everything and could not figure out what in the world was making her sick that was in the meal, and finally realized that there was gelatin in something- like powdered plain gelatin, and it is made from cow's hooves I guess. Even that tiny bit of something that wasn't even meat, but still an animal product upset her stomach so badly! I think that was the moment her mom finally realized that her daughter wasn't making this stuff up or doing it to get attention- it was a REAL issue for her. She is actually vegan now and very healthy. I think what diet works for you really depends on what is going on health-wise with you. I would not recommend that anyone eat gluten or processed foods, but for some of us meat saves us and for others it could really harm. Trust your gut- literally! Here is my food blog too, if you are interested in seeing what we eat, especially if you like to cook any. We make a lot of homemade gluten-free snacky things and desserts sweetened with honey or fruit: www.chickiepea.wordpress.com There are lots of great websites out there with recipes for gluten-free food and how to deal with going to restaurants, etc. too.

DH and I are both voting religiously and have spread the word to co-workers, family, friends, other forums we are on, and Facebook. I posted the link to some autoimmune pages on FB as well. I tweeted it and posted to my blog.

Just posted online every place I could think of, and put in my day's vote

She does still have adenoids. We had them scoped by the ENT back in Sept or Oct and he said they did not look like they (or sinuses) were harboring infection or had any other issues (scarring I guess.) I'm afraid to have them out because (maybe this is silly) I have read that anesthesia can exacerbate bipolar, which is what she was first diagnosed with and there may also be some family history. I don't want to "turn anything on" genetically by trying to avoid something else. It's all so simple, isn't it? Ha!

We're on day 3 of the Azith (doing 7 days to eradicate any strep and/or mycoplasma) and she is just EXHAUSTED. Her skin looks so weird and mottled and it looks like someone drained the blood from her face and left dark circles under her eyes. Behavior is not that bad- no violence, but lots of sensory things going on and teachers all say she is doing awesome at school, so my guess is that she's using up every last bit of energy there and falling apart at home. She's quick to whine and react with impatience at every little thing, some picking apart of how you say something and has come up with lots of "inventions" lately (grandiose behavior.) We're moving and saw the psych on Sat who thought a lot of it was just anxiety about the move, so we're just waiting it out at this point. We're doing all we know how to do. She'll do the 7 days of treatment Azith then go to every other day 250mg, continue the diet, continue the NRT (which has helped!- nutritional response therapy) and chiro once/week, try to get her to do some yoga/stretching, keep the routines the same with lots of time for transitions and foster as much sleep as we can, and have ramped up the epsom salt soaks at night for her and use of xylitol gum. Her 72 hr culture came by negative today, not that that means anything.... but still....