SearchingMom

Hello and welcome! I've been away from the forum until today (just posted something about elimination diets this morning), and I saw your post from early March. I used to post on the PANDAS and Lyme forums when I thought my DS11 might have those conditions. I've read about so many possibilities for DS11: PANDAS, Lyme and Lyme co-infections, vitamin/mineral deficiencies, ADHD, dangerous food colorings/additives/preservatives, psychiatric conditions, leaky gut syndrome, serotonin deficiency, hormonal imbalances, Candida yeast overgrowth, adrenal fatigue, phenol overload, food intolerance/allergies, etc. You name it, I've surely read about it! From what you posted, I certainly cannot diagnose what is going on for your kids, but my best advice is this: try an elimination diet and keep a food diary. Recording daily meals even before the diet is good. The risk is non-existent because your kids will still be eating, and the potential for good results is very high if specific foods are the root of their problems. It takes an average of 5-7 days (sometimes more) to clear the body of antigens aimed at anything considered "foreign." I've even read that sometimes kids have a herx type reaction, but my DS11 didn't. If you start this at a younger age, I think they have less built up in their systems, so it gets cleared out quicker. Some people start with foods their kids eat a lot of and/or crave frequently. The most common foods that cause issues are wheat, soy, gluten (including wheat, barley, rye), eggs, sugar, citrus, corn, chocolate, bananas, meat, potatoes, and the list goes on. Over time my DS11 narrowed his diet down to pizza and milk, so we started with dairy and gluten. Later I discovered he's got a long history of symptoms related to dairy intolerance. Keep in mind that it is extremely rare for a person to be intolerant to only one food; typically, they are intolerant to at least 2 or more foods. This is why we're working on gluten, too. It's also very important to go organic if you can (you never know what they put in something non-organic), and removing additives/colorings/preservatives is a must. I know you mentioned the money factor, but I spent more money (and time) on doctors who did nothing than I have on foods that have improved my son's health long-term. I also encourage you to go on an elimination diet yourself along with your kids. Food intolerance can be inherited. I did a practice elimination diet on myself to test the quality and taste of foods before giving them to my DS11, and to my surprise, I found that I cannot have meat, sugar, dairy, corn, or citrus. I feel SO much better now - and I didn't even realize I was feeling bad! If you don't go with the diet, I still think you can get a lot of benefit from keeping a food diary (plus recording frequency and severity of symptoms). We started that way and discovered so many patterns that were hidden. Then we built from there to doing the elimination diet. I wish someone had mentioned food intolerance to me before (which is why I'm mentioning it to you now). It would have saved us so much heartache and a year's worth of unnecessary worry, daily stress, and doctor's visits. Even if food issues ultimately aren't causing your kids' problems, I would consider it irresponsible of me not to suggest it to you so early on. Best wishes, Angela (SearchingMom)

Hello, I haven't posted for a long time now, and many on this section of the forum may not know me, I think, but I have some new developments related to this topic. First, a brief recap: back in August 2010 I thought DS11 was PANDAS or Lyme, lots of aggressive and irrational behaviors with daily anxiety; not long after we started a food diary and stopped restaurant foods and food additives/colorings/preservatives and saw slight improvement; later thought it was a vitamin deficiency or yeast overgrowth and/or leaky gut; then thought it was serotonin deficiency which could also be due to stress or digestive absorption issues (leaky gut) and gave 5-HTP daily (still do); went back to magnesium in addition to 5-HTP about a month ago to see if there was any improvement. This was after we had IgE positive test back in December 2010. We didn't pursue allergy testing because DS11 was still very closed to visiting more doctors. So then... About two weeks ago my mom and I started an elimination diet for my DS11 (unbeknownst to DS11) excluding most dairy and gluten (so far about 90% dairy removed and 50% gluten removed). About three weeks ago DS11 started to naturally reject foods he had been eating daily (pizza and milk, primarily), so we stopped offering those (we don't even mention it!) and have worked every day planning GFCF meals that hopefully taste great! He's been really open to these new meals, and seems really happy with the variety. No problems getting him to try new things at all. In fact, many times he goes straight for the GFCF item that's new, and ends up scarfing it down. If not, he tells us what he thinks of the new foods and we don't repeat failures. It's stressful working so hard every day to find something new that fits all our food restrictions (there are others besides GFCF), and sometimes if we're lucky we come up with one meal plan a day. Grocery bills are high, too, buying all these new ingredients. In the meantime, I'm on an elimination diet, too, and so far can't have meat, dairy, gluten, sugar, corn, or citrus. It's kept me calmer on this new diet, but tired, too. Some days I don't want to eat much, so I listen to my body and let it rest. I figure it's been trying to process indigestible things for a *very* long time now, and maybe it needs extra space to get rid of this stuff. So I lay down and drink water and try to stay as relaxed as I can. Sometimes I take a hot shower or Epsom salts bath to help eliminate toxins. I drink diluted carrot juice and eat watery veggies if it's hard to hold much down. Many of my symptoms are gone, like chronic rhinitis (I can breathe now!!!), constantly itchy inner ears, headaches, nausea, indigestion/upset stomach, constant anxiety, out of the blue anger about STUPID things, OCD behaviors, PMS, etc. My skin is a better texture, too, but I've still been having itchy skin at night which could be due to toxins being eliminated. I certainly don't have any new symptoms, and I feel much better overall. The most significant thing about DS11 being on this diet (and for so short a time) is that over the last week he has been TALKING to us again, even being a bit humorous which is something we haven't seen in almost a year. It almost seems too good to be true, and I even hesitate to write this, but he talked to me more yesterday (in pleasant tones and didn't take things personally or get upset about ANYTHING) than he has the entire last 9 months. He was even willing to go to Target (in the same car, by himself with me) to get something for his Wii. I can't even remember the last time that happened. This morning he looked at me when he came in after waking and gave me a little grimace after making eye contact. Don't remember the last time that happened either. We've got a long way to go still, but to think this all could have been caused by the "healthy" foods I have been giving DS11 since birth? This is changing EVERYTHING I believe about food and nutrition. So to answer this topic's question "Do elimination diets work?" I can only say it's entirely possible - IF YOU ELIMINATE THE RIGHT THINGS. I thought I only had trouble with gluten, but went on to find sugar was a problem. Then dairy. Then corn. Then meat. Then citrus. The elimination of each individual food eliminated a nagging long-term symptom. Sometimes it eliminated a symptom I WASN'T EVEN AWARE OF. After experiencing first-hand the steady and relatively speedy subsiding of symptoms (both physical AND psychological) on this diet for me and DS11, I recommend it highly. It won't work if this isn't the underlying problem, of course, but it's definitely not a risky test if it isn't the problem. We started with gluten and dairy since it was all DS11 seemed to be eating and craving. I've been reading a lot, and that seems to be very common for about 50% of people to actually CRAVE the foods they are intolerant to. Others have said many of the same things I'm sure previously on this forum - I'm not the first to have such an experience. Hope this helps in some way. Angela (SearchingMom)

Dear forjpj, Yes, we're hanging in there. Thank you so much for asking! Sorry I haven't gotten back on until now. Sometimes I get so overwhelmed I can't do much at all. Last night ds11 started to rage again and found a curtain rod we missed when putting away objects around the house, but there was no hitting that happened. I got really upset and told him I was worried about him, and he said he couldn't trust us because we held him down when we said we wouldn't. I told him I understood why he didn't trust us, and that it was okay. He seemed to listen to me a little when I was feeling genuine empathy for him instead of massive fear as I usually do. I'm leaving work now and don't know how the day has gone. It's always hard being at work not knowing what may be happening. I can't check in too often because I can't get any work done. And I get into a lot of fear all over again. I keep trying to remember that he really IS afraid, and it's bigger than mine right now. He doesn't have anyone else to hear him or help him. It's a lot to try to fix, and I hope I can muster whatever good energy I need tonight. Still didn't call Dr. N yet, but I will. I think you all must understand the despair that takes over sometimes? SearchingMom

Absolutely! My ds11 has dilated pupils all the time, mostly during rages. He says it's because he is afraid, and I read that fear is a frequent cause of dilated pupils. Other things I read about that cause dilated pupils are poisons and drugs (like heroin, dope, etc.) And even when he looks directly into a light, the pupils go down slightly toward normal, but with the light still shining in them, they get larger again. I hadn't read about the brain inflammation part. Sure wish I could get him to take some ibuprofen. SearchingMom

Hello, I just posted on the PANDAS forum re: "Falling apart" and we seem to be doing so for two days now. Huge raging, not sure if the cause is strep (re)infection, suspected yellow dye in Lay's potato chips, too little 5-HTP, or Lyme growth every 3-4 weeks. We saw Dr. R in Plano which gave us a chance to test via ELISA for Lyme, bartonella, and babesia, but someone on the PANDAS forum said ELISA doesn't yield good results. I couldn't get enough info from Dr. R about which one would give us the best info. He said it was a financial decision and ELISA was good enough. What advice do you folks have? I didn't research ELISA beforehand as perhaps I should have. We didn't do the Cunningham test because I thought it really only reveals IF there is an infection, but not anything about specific co-infections. My despair has passed for the moment, and I'm trying to formulate a plan. I will call Dr. N in Denver again (didn't hear back after leaving a message on Nov. 11) to try to get into see him. It's just hard to wait for the test results which won't be ready until after New Year's. And now I hear they might tell us nothing? I'm sure I've read or gotten good advice on this before. Hopefully you folks might point me in the right direction again? Thank you so much, SearchingMom

Dear mama2alex, I'm very much looking forward to whatever insights you have! Thanks for taking the time to let me know you understand with such short time on your hands. Thanks, SearchingMom

Dear peglem, Thank you! Some really good concise ideas here. We had already been thinking of clearing out a room so he could go there to calm down. Just a little concerned we'll have to lock him in which could traumatize him more and make it good for only one time. We'll probably have to go in with him which would be better with no objects for him to use against us. My mom and I have tried to hold him, rock him, but he pushes us away, then he grabs us desperately for help but won't let us comfort him. We're going to try today to talk to him about a plan, but the exacerbation has been so huge this time, I'm not sure it will have any effect. And he wouldn't eat today what had the 5-HTP in it. He always finds a way to not eat it. I'm wondering if his body is rejecting it for some reason. It's so hard to know what to do without a good doctor to help. The only thing that helps him de-escalate at all is promising not to hold him and saying we know he's really scared. It works for a few minutes, then he switches to something else he's upset about. Makes no sense. It's all so random, at least from where we are sitting. And I know what you mean about male energy. My dad sometimes makes things worse inadvertently. He has this stance that you shouldn't let an 11-year-old call the shots. And I fully agree, but I don't see how ds11 is really in control here. I have come to a place that we'll have to do what we can to keep ourselves safe and keep looking for help and support from a doctor, but we might be in a position to hold him sometimes when he gets way out of control. And he is very strong. He's already over 5 feet tall. Our new plan is sketchy at best. It's so hard having to adjust to the changes this situation brings on a daily basis. Appreciate the support, SearchingMom

Dear LLM, Thanks for replying. I pursued therapy for ds11 back in August, but the folks we've tried to work with won't work with ds11 unless he's medicated, and I can't even get him to take 5-HTP without sneaking it into his food. We recently learned about a play therapist, so that might be a start for ds11. Before ds11 ever came down with whatever this is, I had very good boundaries and limits in place, and we had a solid routine for years. Never any issues with combativeness or arguing at all. I have worked with him since he could talk about feelings and how to make him feel safe. Yesterday I found a letter he wrote to me when he was six saying when you come home mommy I want us to talk and hug and have lovies because I'm worried. I haven't seen that child in a really long time, and I'm crying even now. When will I ever see him again? I posted once before that this occurred right about the time he started puberty. Others said they encountered this with the older kids, too. Big changes in the brain at this time. Less melatonin and swings in hormones, obviously. I've been wondering if I should take him to an endocrinologist. His adrenaline seems way out of whack, too. Dilated pupils all the time. We are trying to keep everyone safe; we've had plans that worked before that aren't working now. And we do need a good doctor. It just takes so much time to figure that part out, and in the meantime, our lives keep falling apart. To build trust we tried promising him we wouldn't hold him again, but then he interpreted that as he could do anything to us and we wouldn't protect ourselves. He says he has a right to hurt us and defending ourselves (by simply blocking blows or ducking or sometimes holding him briefly to remove objects from his hands) is attacking him. Completely irrational! Never did this before. And I should clarify that I don't feel victimized because I do stand my ground with him. This is what sets off the rages sometimes. But for the last 2-3 weeks when I stood my ground we were able to talk and did not encounter raging AT ALL. One day he's mad about getting off his video games after his designated time, the next day he's not mad like it never happened. Then that day he's mad about something else that he wasn't mad about before. None of it EVER makes sense and it cannot be purely psychiatric in origin. I believe there are emotional issues to address later or when he's lucid (which we do), but it won't work when you can't even talk to him or reason with him. He repeats the same thing over and over for hours. Nothing gets in. Losing privileges has no effect. We've tried. When he rages, there's nothing to do but to wait for it to pass and minimize injury. Can you elaborate about why the ELISA test won't be effective? I want to pursue a better testing method if that is going to lead nowhere. Dr. R didn't give me any info to work with. When I asked which test would be better (ELISA or Igenex) he said it was a financial decision. He said we would still get a good idea from the ELISA. That was it. I asked if I should try the Igenex, too, to compare the results. It's a financial decision, he said. Maybe I didn't push hard enough. Always second guessing myself on everything. If you can help about the ELISA test, I would be most grateful. Thanks, SearchingMom

Dear Me, Thank you for replying! I could really feel your understanding, even over the net! I don't have any friends now. I don't have any kind of social life at all. Just work and home, and trying to get food and sleep, and hoping we don't have to deal with a rage. I tell people about it, but they don't want to talk about it, and they rarely ask how things are going. I'm sorry you've lost family over this. I sometimes worry if that will happen to me, too, but so far, my parents have really tried to help as much as they can. It's a really hard situation for all of us. Even ds11, I know. But he doesn't seem to have any sense of what's happening. Even when he causes us injury, all he can say is why are you hurting me? Have you found a good dr? Has your child been diagnosed with or treated for anything yet? And I may send you a PM sometime. I sure could use some friends! Thanks, SearchingMom

Dear forjpj, Yes, it's been awful. There's no word to describe what this is like. He's been on probiotics since May (no trouble getting him to take that), but we've had no antibiotics except for about two weeks of grapefruit seed extract which did exacerbate symptoms. That made me think if his immune system was responding in some way, there was probably an immune thing going on. I just wish we could live normally again. We got to for about 2-3 weeks, and then it all fell apart again. We have been working since early this morning putting up anything that ds11 could use as a weapon. And ds11 has been getting less gluten in his diet, but he has had pizza for three days now, so I suppose that could be a factor, too. But no dr seems to be able to help us before things get bad again. I just don't understand why this is happening. I went to a homeopathic dr who said to give ds11 inositol and it made him much worse!! There went $50 down the drain because I can't return the stuff. All the time and money wasted it seems. I just want our lives back. Thanks for sharing. I hope you get relief soon, too. SearchingMom

Dear Wendy, Thanks for responding. I will call Dr. N again tomorrow. I think that's a good idea. I'm just not sure I can give benadryl because the dyes in chewables/liquid made him rage before. Do they make dye-free benadryl? I'll try to remember to check. I'm in tears even as I write this. And if you know more about the growth/herxing cycles, or somewhere I can read more, that would help. I keep repeating I just don't understand. There has been a pattern to follow before now, and there are too many possibilities for what caused this exacerbation: not enough HTP? resurgence of lyme growth? additives in potato chips? strep (re)infection? Does your son have trouble with additives/dyes, too? And what test did you use for babesia and bartonella? Will the ELISA tell me about them? Someone else just posted that ELISA doesn't work. Anyway, thanks for sharing info and wisdom with me. SearchingMom

Dear Jill, Thanks for responding! I do feel like a bad parent and that it's all my fault all the time, so thanks for supporting me that I'm not a bad parent or crazy. Right now, this very moment, I don't know how to go from here with a plan. Everything feels so urgent and horrible all the time. I'll try. We have so much trouble getting anything into him voluntarily that offering something like ibuprofen we've been afraid to try. He can't swallow pills either, so in the past we usually only have the option to give liquid ibuprofen (dyes!) which is not an option now. Do they make non-dye ibuprofen? We considered last night while talking with ds11 to get hockey goalie masks and other gear to protect ourselves because he's so terrified of being held, and each time we do it, it erodes any trust we might have been building. Things were REALLY GOOD for about two weeks, and then BAM! total raging again. It really threw us off track, although we should always be prepared. I will look for another doctor, but Dr. R was #5, and it's hard to keep going and not be discouraged. Thank you again, SearchingMom

Hello, This is going to be a random - just too much going on. My ds11 has been raging again for two days and we haven't seen this level of attack since Nov. 1st while on 5-HTP and off additives/dyes. And lyme has a 3-4 week cycle, yes? I'm crying all day long, not eating or sleeping again, just like when we started in May. My parents (in their 60s) have been living here helping me (single mom), and ds11 has caused repeated serious injuries using objects - even before he never ever did this even a month ago! He carries around curtain rods, vacuum tubes, hard drives, to hit us with or throw at us. What do you folks do when your kid attacks? I feel huge torment because when ds11 gets out of control, we try to hold him on the bed or floor until the seizure passes. But ds11 has a traumatic history with 1) hospitals recently holding him down to give sedatives, and 2) because (with an APGAR of 9) a pediatrician (not physically present at the hospital) suspected sepsis after 36 hours of labor, for the first 10 days ds11 was tortured with multiple IV sites on his head, hands, feet, legs. I really feel like I'm going insane every second. And all ds11 says while raging is "Why are you hurting me?" He grabs me and clings to me and begs me not to hold him again. So do you ever find yourselves needing to hold your raging kids, or do you just let them hit you as long as the episode lasts? I feel terrible every time because ds11 says he can't trust us to not hurt him when we're only trying to minimize injuries to all of us. This all came out of the blue after over one month of NO RAGES AT ALL!! Once again what's happening is ds11 is getting to bed and something "wakes him up" while he's ALMOST OR ACTUALLY ASLEEP and he starts to rage. MAJORLY HUGE PUPILS during rages AND when not raging. Which is why we started the 5-HTP. We went to Dr. R in Plano on 11/29/10 and got bloodwork for lyme, bartonella, and babesia (ILISA through LabCorp?). I wanted a more detailed explanation of testing options but he was hard to follow. Maybe we caught him on a bad day. We won't get results until after New Year's. Maybe someone can explain the science of this next part? While we were there ds11 complained of a sore throat, and Dr. R confirmed it was inflamed. But he didn't do a test for strep even though PANDAS was still on the table. He recommended Mucinex because ds11 already had ASO and DNase-B titers run in mid-September which were very low. So Dr. R said he obviously didn't have strep. My only thought was couldn't ds11 have caught strep (even for the first time?), and there was a good reason to run a strep test even though his Sept. titers were low? I asked questions but I really didn't get very clear answers even in a 2-hour appt. And we couldn't reveal to Dr. R that ds11 has been on 5-HTP or it would have ruined our ability to continue. We told Dr. R the raging was better, but I never had a chance to speak with him alone. And it didn't really seem that he supported the idea that dyes/additives could cause raging. And Dr. R didn't give abx in the meantime because it could mess things up if we needed to do more testing later. Also, on the trip to Plano from Houston, ds11 wanted Lay's potato chips he saw at a rest stop. We checked the label which said "potatoes, sunflower oil/corn oil, and salt - no preservatives." And ds11 has not had any chemical additives during the month he didn't rage. The worst episode with ds11 was with yellow dye in aspirin, and I would NOT be surprised if Lay's used yellow dye in their oils. It appeared they might be okay, but now we know differently. So it could be a strep (re)infection or the chips or both. And he missed his dose of 5-HTP the day we traveled, and he keeps saying food and drinks taste funny. For the last week we can only get about 100-200 mg a day in ds11 - he used to get closer to 400-500 daily. He has a huge issue with sedatives as I mentioned, so we have been sneaking the 5-HTP into anything we can. I also called Dr. N in Denver for an appt. but have not heard back yet after leaving one message. Their message service clearly said to leave only one message, but I haven't heard anything since Nov. 11th. I suppose I should call again. I just didn't want to jeopardize our chances of seeing him. Sounds stupid I know. My judgment is not clear anymore. Just barely hanging on. I feel so alone in all this. I'm just needing to know someone is out there who knows what this is like, please? SearchingMom

No, we haven't had tests for PANDAS or Lyme yet. I did manage to get ASO and DNase-B titers, but that's all anyone has been willing to run for us. We're definitely going to check on Lyme disease and co-infections. I tried to get Dr. I in San Antonio to run these for me, but he said no. We asked the neurologist back on Sept. 3rd for an MRI, but he said no because his diagnosis was "psychiatric" issues. I wanted one because ds11 had a very hard fall on concrete (fell backwards off a step stool in our garage at age 8), so I was wondering about post-concussion syndrome since he had a very small outer lump afterward. I think half the battle is finding a good doctor. Can't do as much without one. Thanks again to all for your support and suggestions. I'll post updates as they happen. Luckily, today was supposed to be a good day, and it was. No rages! Preparing for tomorrow.... Angela (SearchingMom)

THANK YOU EVERYONE! I've been feeling so alone with this, and your reaching out about this has really helped me. Sorry I didn't get back sooner. I've been crying almost every minute the last few days, and I'm trying to get a little more centered so I can keep up this journey. I posted on the Lyme forum to find a good LLMD, and I've got several great leads. Just gotta figure out the money and timing and what tests to do. Today was supposed to be a bad rage day for ds11, but it hasn't been so far. (I don't think I clearly explained in my original post that ds11's rages used to be random, but for the last 6 days we have been able to predict when the rages will happen. Very strange.) I lowered his dose of 5-HTP back to what I originally started with, so perhaps this is making a difference. He's also off the enzymes (refuses to take them after 3 weeks) and the only other stuff he's on is probiotics, plus lower doses of magnesium and TruCalm combo. I think I might have overloaded him, but we'll see if the rages worsen at these lower dosages. He's also not had any additives, aspirin, or dyes for 2 weeks, so hopefully those are leaving his system. Our number one priority is not giving him any more - even if he rages about not getting something he wants that has bad stuff in it. I wish this was easier, but I know it would be much harder without the help of all you folks. Angela (SearchingMom)

Hello, I posted on the PANDAS forum looking for help re: ds11's ongoing symptoms, and so far the consensus is check Lyme first (even though it could be PANDAS or other issues in tandem). I live in Texas and as I'm sure many of you know, we don't have a lot of LLMDs in TX. I'm most interested in finding a REALLY GOOD LLMD, even if we have to travel far. I've already spent substantial money on doctors who haven't helped, and I'd rather spend money on one that really knows what they're doing and is willing to listen to a parent's take on their child's illness. I realize this means you would have to PM me with details. I welcome any suggestions of doctors in the 48 states. Thank you for any help you can give. Always praying, SearchingMom

Dear SF Mom, I got your PM. Thank you so much! I'll send you a separate PM because I have a question. We've seen some good results with 5-HTP (precursor to serotonin), but he's having one really good day and then one really bad day for 6 days now. Since taking the 5-HTP ds11 (who is a very big kid - takes 3 of us to handle a bad rage) has had "calmer" rages. On a scale of 1-10 a bad day used to be a 10. Now his bad days are more like a 7-8. He tries to fight but doesn't have the same energy to sustain it. Instead of high anger he starts crying. On the good days he's a 1-2. Niacin is supposed to be a natural-type sedative. I read in a study from the 80s that it was used successfully with schizophrenics, even to the point of curing some of them. DS11 has some niacin in his B-vitamin, but I haven't tried niacin on its own to see its effects. We've seen more consistent results using magnesium in a orange-flavored powder mixed with natural "kool-aid." DS11 just thinks it's kool-aid without dyes. If he gets argumentative or grumpy, we offer him a glass. Basic magnesium supplements worked, too, but he detected a bitter flavor when mixed with drinks, so we switched to the orange powder purchased at Whole Foods. One other mom recommended to me maybe using peanut butter or a handful of peanuts to help with rages. Haven't tried it yet. Don't know if it works or not. Hope this helps somewhat. I'm so grateful for your PM, especially now seeing what you're dealing with on your own front! Sorry you're dealing with this, keeping you in my thoughts and prayers. SearchingMom

Thanks, T.Mom and Peglem. I just checked the flow chart and also the list of PANDAS symptoms posted by Buster. Not sure how I missed them before, but I do see a correlation of ds11's symptoms and Buster's list. I knew that Lyme and co-infections could be playing a part, so since I couldn't get a doctor to prescribe abx, this is why I tried the grapefruit seed extract because it is a natural broad-spectrum antibiotic. It seemed to exacerbate and I couldn't tell if he was herxing or not. I'm hoping to get some more input from forum folks, but I will re-examine the Lyme route. It's just that TX is not Lyme-friendly, and I had hoped it might be something we could treat with the diet and supplements. Just wondering if your PANDAS kids have obvious reactions to dyes? Have you found diet or ingested substances to play any part at all with causing or worsening rages? We found a very clear connection with dyes and aspirin - and restaurant food. Also, the reason I went with the 5-HTP was that ds11 would always be just about to fall asleep and he would be awake for hours arguing and raging with dilated pupils. When I investigated symptoms of serotonin deficiency, he had them all. And I didn't want to do SSRIs. Hope we didn't mess that one up, but the naturopath said I was right on with the supplements we've been using. There has been noticeable improvement, but I also keep wondering if there is something else lurking infection-wise. I'm thinking of halting all the stuff ds11 is taking except for probiotics, magnesium, and B-vitamins. He's resisting the enzymes after 3 weeks, so maybe his body needs a break from them. And his appetite has been decreasing the last few days (not eating lowers serotonin). So I'm wondering if his body is trying to regulate (lower) the serotonin on its own and needs a break from that. I really appreciate the empathy and advice. Sometimes I feel so alone and I just want this to be over. And sometimes I lose my way when despair and desperation take over. Angela (SearchingMom)

Hello, Some good folks have already given me good advice re: the Cunningham test, but I want to pose the question to the whole forum. For two weeks we've been using 5-HTP, magnesium/calcium, amino acid combo, probiotics, B-vitamins, enzymes, but for the last several days, ds11 has a good day (no rages) then has a REALLY bad day of rages all day and it's getting harder to handle. I'm sure you folks must know what I'm talking about! I don't know if this is normal or not with 5-HTP treatment. Are we overloading his body with too much? I cry all the time, I'm constantly on edge, I hardly eat and lost 15-20 lbs since May. I can manage the cost for the Cunningham test, but I’m overwhelmed with so many possible directions (Lyme, serotonin deficiency, phenol overload from dyes/additives, gluten intolerance, etc.). I don't want to spend valuable time going down the PANDAS road if it makes more sense to follow another. So can you tell me: Does this sound like your kids who have been diagnosed with PANDAS? I'm asking because ds11's symptoms may not be a match. Please forgive the long post. Some history: ds11 had only organic food from the womb until age 5 when started restaurant food. Always rosy cheeks, bright eyes, happy disposition, strong social skills. Started reading age 3, showed great sense of humor. Diet of all fruits and veggies, soy, lean meats, whole grains, fish, dairy (plenty of gluten, I realize now). No signs of food allergies/intolerances, psychotic episodes, irrational thinking, or rage until age 9. DS11 has had all immunizations until now. June 1999 - Kept at hospital after 36-hour labor and emergency C-section due to suspected sepsis. APGAR 9. I insisted on breastfeeding next day or would leave AMA. DS11 given gentomycin and other abx for 10 days. A few URIs as an infant/toddler, but not more than 2-3 per year. Given abx maybe once or twice. Pediatrician recommended not giving fever reducers when ds11 was toddler unless fever surpassed 102F. Summer 2004 - First exposed to ticks at parents country property. Has had at least a dozen embedded ticks over the last 6 years. Fall 2004 – Diagnosed with asthma age 5 after almost developing pneumonia. Took abx. Started albuterol via nebulizer twice daily. Ended this treatment at age 8 when ds11 said it wasn't helping. No recurrence. Fall 2006 – Very bad sore throat. Strep not diagnosed with rapid culture test. Doctor would not do the three-day culture. No abx prescribed. October 2008 – Appendix removed due to emergency. Given anesthesia and strong antibiotics. May 2009 – Phobias began with fear of statue in our garden being alive and cursing things. We had to watch statue before he would bathe. One-hour showers began because he had to make sure shower items weren’t getting cursed. He apologized to the plunger because it got cursed. Frequent headaches, so took ibuprofen (dyes!) or Tylenol (more bad stuff!) Often woke during the night and couldn’t get back to sleep. When we walked our dogs, he complained his legs hurt and he had to stop. Most days he could not eat breakfast for 2-3 hours. DS11 was very irritable – I thought onset of puberty. (Still doesn't eat sometimes for hours.) Summer 2009 – Continued irrationality. He was “switching dimensions,” often didn’t recall details or conversations or events, experienced genuine distress when I didn’t know what he was talking about. Next day he was normal. He was still reachable, but episodes of irrationality were wearing us down. When I asked about physical symptoms, he always felt so much better when I was trying to figure out a physical cause (like I finally believed him something was wrong!). He stopped wanting to spend time with his favorite pets and started resisting chores because of aches and pains. No rages at this point. Fall 2009 – He had weird rashes that lasted a few days (gluten?). Occasional headaches. Meltdowns began over small things, but certainly nothing to raise any red flags. Still reasoning well enough. Complained of being hot when it was cold and vice versa. We all got an outbreak of scabies lasting 3 months. Treated successfully with neem oil and tea tree oil. Allergic to permethrin. January 2010 – DS11 thought he had a brain tumor. Only symptom was headaches, I thought doctors would not diagnose with just one symptom. Ibuprofen/Tylenol were helping (Ha!), headaches not happening as often. He had occasional nasal/allergy congestion, so I thought it was that. Then began his “Everyone is dumping crap on me” phase. ANYTHING we said he completely misinterpreted and took personally. We were “ruining his relationships” with pets, his gameboy, TV, anything, and he couldn’t enjoy anything anymore because we were “poopy.” Sometimes he might listen and realize we weren’t poopy, but he listened less and less. Started checking behaviors like making sure locks were locked by pulling 50 times. April 2010 – Phobias still happening. He slept longer in the morning, not wanting to do school (I home school him). I started a new routine to get his sleep back on track which went well at first, but he started to have frequent meltdowns related to unresolved fears that he would never discuss. He could only panic or rage and start hitting us. He is a gifted student and suddenly stopped wanting to do handwriting (he had been doing really well!) and he could no longer understand math concepts (multiplication/division) that he had previously learned. Sometimes he couldn’t even add or subtract. He would ask for the answer and say I was being mean for making him think of the answer. Sometimes he was very lucid and showed amazing critical thinking, but the random “you’re being poopy” thing got worse. May 2010 – New symptoms he reported when we could talk to him: lying still in bed sometimes the room would spin, tinnitus (ringing in the ears), highly sensitive to sounds and smells, when held during a rage he screamed we were killing him when we weren't holding him hard at all. He seemed okay part of the time, and a monster the next. Definitely Dr. Jekyll and Mr. Hyde. We started B-vitamins at this time which seemed to help for a while. June 2010 - Went to PCP because I learned about PANDAS (Sammy) on Discovery Health. Referred to neurologist for appointment on Sept. 3rd. I took him to the country for about 10 days (my parents have a cabin), and he seemed to be doing really well. No gameboy or TV, same organic foods, but he had a 6-hour rage after taking Benadryl chewables (dyes) and low-dose chewable aspirin (dyes) after getting a wasp sting. He switched to aspirin as the ibuprofen/Tylenol was no longer working. I NEVER made the dyes connection. Also had another tick bite which formed itchy red bump that lasted about one month. August 2010 - We visited psychologists due to worse rages. Got NO help. One suggested we take ds11 to ER for more rapid PANDAS assessment where they convinced me to put him in inpatient psychiatric facility. I took him out AMA 2 hours later. All this while CPS was breathing down our throats because one therapist reported ds11's attacks. I started no contact with ds11 because he constantly attacked me physically and verbally and I couldn't think anymore to figure out the problem. (But he still maintains the no contact started because I was hurting him.) No one will work with ds11 if he isn't "calm." Tried grapefruit seed extract but it seemed to exacerbate. September 2010 - The neurologist said not PANDAS. He let us run ASO and DNASEb, but titers were extremely low. I found Dr. Infante in San Antonio whom we saw on Sept. 16th. He also said not PANDAS, but maybe he is too new to help if ds11 does have PANDAS. Started food diary to track food issues. DNASE-B Antibody result is <60 (Flag reference ranges: Preschool <=60 Titer; School <=170 titer; Adult <=85 titer) ASO result is 6 (Flag reference range: <150) Sed Rate by Modified Westergren result is 4 (Flag reference range: < or = 15) C-Reactive Protein is <0.10 (Flag reference range: <0.80) October 2010 - Went to naturopath who was ultimately no help. He prescribed the same stuff I'm already using, but his supplements were impossible to hide in food/drink. DS11 has no knowledge of treatments other than chewable enzymes, probiotics, and B-vitamins. He also suggested inositol for calming - only 750mg per day made rages MUCH worse. Stopped that last week. Just ended eating restaurant food. Trying to do gluten free diet. The only physical tics ds11 has shown are chewing/twisting hair when it was longer (now short), and pulling out his eyebrow hairs, but never to the point that hair appears missing. I'm sure I've missed or forgotten something, but I'm tired and hope this outline is enough for now. I'll be glad to answer questions if any come up. Thank you all for anything you can help with! At this point, I don't know where else to turn. I keep praying. Angela (SearchingMom)

Dear Kara, Dr. Infante said he wanted to add the results of the Cunningham test to ds11's file, which seemed to me that he didn't expect them to come back positive. He didn't mention if he would change his diagnosis if the results did come back positive, and I didn't press that issue since he already decided ds11 didn’t have PANDAS. But to be fair it's possible he might reconsider despite being mostly focused on tests and textbook presentation of PANDAS. Thanks for your post, Grace. I have not pursued getting the Cunningham test done for ds11 because I got very discouraged after our visit to SA. Now reading about your experience with him, I’m wondering if I should have the test done anyway and try to find a more experienced doctor? And I’m concerned to hear that Dr. Infante talked about SSRIs. I thought the primary treatment for PANDAS is abx, but I’m still new at this myself. SearchingMom

I took ds11 to see Dr. Infante in mid-September, and I can vouch that he seems new to PANDAS. He said ds11 does not have PANDAS (despite my describing his strong similarities to kids described on this forum) because he didn't have high titers. I asked how many PANDAS kids he had diagnosed/treated and he said two (as of 09/16/2010). He was willing to write an order for the Cunningham test despite not thinking it was likely to be positive. He spent about an hour with us, but I was disappointed that he was most focused on what he could test vs. making a clinical diagnosis. I was hoping he might give us abx to see if they made a difference. In the meantime, we have found ds11 is extremely sensitive to food dyes/additives. Our food diary shows that his rages directly correlate with ingestion of these toxins. So I have been giving him broad-spectrum enzymes and 5-HTP supplements to help balance his serotonin. We found inositol exacerbates rages, but straight 5-HTP and magnesium together work well so far, if we can keep him taking them regularly. Alas, he still hasn't taken his final dose today.... Hope this info re: Dr. I helps. SearchingMom

Hello, B-complex vitamins are the first supplements I started giving ds11 back in May 2010. We read about teens with thiamine deficiency and his symptoms were very close to those mentioned in a study I read about from the 80s. Teens who were given mega-doses (up to 600 mg) of thiamine showed obvious improvement after being labeled with a type of "Dr. Jekyll and Mr. Hyde" syndrome. But the more I learned about thiamine deficiency, I decided it was best to put ds11 on a full B-complex rather than just the thiamine. We use organically-made Garden of Life Vitamin Code RAW B-Complex capsules (also with live enzymes and probiotics) purchased from Whole Foods. Ds11 puts the contents of one capsule in OJ in the morning and again at night. Each capsule also includes (IMO fairly small) doses of inositol (13 mg), choline, calcium, phosphorus, PABA, folic acid, and biotin. He says they taste funny, but he has continued to take them regularly, with a few exceptions on nights of high aggression. He also takes twice a day 200mg of inositol in a separate product called TruCalm which also contains niacin, vitamin B6, GABA, taurine, glycine, magnesium, and valerian. So he's getting extra B-vitamins from the TruCalm, but I read niacin is a natural sedative and sometimes is used successfully to treat schizophrenics. For three weeks ds11 has taken broad-spectrum enzymes (TriEnza from Houston Pharmaceuticals) and extra magnesium (orange-flavored powder) in OJ, morning and night. He's also started 5-HTP and the TruCalm six days ago (also in OJ with weird flavors masked by the orange-flavored magnesium powder) which has really helped keep him calmer when rages start - even it seems to prevent them on occasion. Sometimes I add extra 5-HTP (50-100 mg) to milkshakes/soy milk when he has ingested something we discover is a trigger food to temporarily boost serotonin production. I don't claim to know how all of this works, but I'm going to a naturopath in two days (without ds11) hoping he can help me sort out why certain supplements are helping and why. At this point I don't think ds11 has PANDAS; I'm 99% certain ds11 is phenol/salicylate sensitive which over time led to serotonin deficiency. Ds11 has EVERY symptom of serotonin deficiency! Since 80%-90% of serotonin is produced in the gastrointestinal system, I figure ingested artificial dyes, preservatives, additives, etc., deteriorated his enzymatic effectiveness (or it could be genetic enzyme trouble that was weakened by bad food stuff), overloaded his system with phenols, and gradually lowered the production of serotonin. And as each substance he's sensitive to is reintroduced, his reactions get stronger each time - I suppose like a person would react to a poison. This also explains why ds11 has dilated pupils after ingesting bad food stuff. The food diary we've been keeping has really helped us find these patterns and start making some connections. Now we're going to try the Feingold diet (as soon as I figure out how to get ds11 to agree) while continuing the current supplement regime, unless the natuopath has suggestions for changes/additions. Sorry to have gone on a tangent there. Hope this helps somewhat re: your original question. SearchingMom

Yes, we have seen a very strong correlation between high phenol foods (mainly non-organic tomato ketchup) and the onset of ds11's severe rages, so we've started him on the TriEnza enzyme product (6 days, so far so good). I read that phenols build up in the body if the needed enzymes are not present to eliminate them normally. I don't know much about red dyes, but I found a web site about phenols and salicylates. Apparently, artificial dyes used in the U.S. are made from petroleum(?!). I need to do more research. What interested my about this post was the note that Red #40 might affect high IQ kids more than others. My son was reading before the age of three (the first thing he read was "Divided highway ends"), and he's always showed signs of being gifted/high IQ. Just another piece of the puzzle, I suppose. Sorry to have resurrected this earlier post, but I've only just returned to the forum in the past few days. I got REALLY discouraged when we went to a PANDAS doctor who doesn't think ds11 has PANDAS, and I've tried to find energy to start this all again. Why does ds11 have so much in common with diagnosed PANDAS kids if he doesn't have PANDAS? It's hard to keep reading about ds11's similarities with diagnosed PANDAS kids when our PANDAS doctor doesn't consider this information relevant. Finding another doctor feels really overwhelming right now, but I guess I don't have much choice. This doctor knows about PANDAS, but he's only treated a few kids with textbook presentation. All I know is I miss my son so much. I don't want to do this anymore. I want him to be well. I want our lives back, but I don't know how to get them back. SearchingMom

Hello all, I’ve read the posts on this thread three times because we deal with rage every day. Thank you mbruin for your courage to post, and to everyone for sharing! I wanted to ask about rages when I first joined, but I was afraid nobody would understand. ☹ My ds11's rages are horrible: biting, scratching, kicking, head-butting, hitting, using an “evil” voice, punching, cursing, and all the while he cries, “Help me, Mommy” or “Why are you hurting me?” Afterward he never remembers hurting us (me, my mom, sometimes my dad). It’s making sense to me that his rages are like seizures. Every night all he can to do is argue and fight for hours before finally collapsing into sleep. Like something is preventing him…. I’m a single mom, and DS11 thinks I'm the problem. In May 2010 he started to attack me physically. Then, on Aug. 6th I put us on no contact to give me a short break. Before his rages were set off when I set limits or told him no, but now he can’t even hear my voice. I tried over the past weeks to reconnect with him but he goes into a panic and starts attacking me almost immediately. He says he can’t be calm if he has contact with me. He demonizes me, calls me horrible names, plugs his ears if I'm talking. He NEVER did these things before May 2010. My poor mother is trapped because she takes care of him exclusively and gets no time to herself unless I leave the house. DS11 hasn't attacked my mom as often as me, but when he has, and I go to help her, he loses it even more! So she asks me not to help because it makes it worse. My dad works out of town most of the time, so he hasn’t been around to help out very much. We don’t have a perfect method of dealing with the rages, but my mom tries to avoid getting them started, so if he’s in a bad place, she doesn’t push shower or brushing teeth, doing usual chores, or adhering to getting off TV, computer games, etc. [she’s 64, so to keep her as safe as possible, it’s been our only option due to having no contact with me and my dad.] But most times it doesn’t matter; almost anything we do or say has triggered a rage. [One time I read the title of a chapter "wrong."] That’s why my mom and I are more convinced every day that this is caused by something physical or some chemical imbalance. DS11 used to be sociable, gentle, funny, kind, helpful, polite, curious. He was definitely a gifted kid. I almost can't even remember what he used to be like which always brings tears. He also just started puberty, and I've read that some kids have PANDAS onset with puberty. A month ago we went to a dr who was supposed to know PANDAS (I found out he's treated only a few kids), but ds11's case is not "textbook," so the dr said ds11 does not have PANDAS. He didn't even consider the rages as a PANDAS symptom!! I told him about PANDAS kids on the forum who rage, but he dismissed it. Although he said we could do the Cunningham test, I was still really upset when we left, so I gave up. Now I'm thinking we should get the test done, but how to convince ds11 to have blood drawn again will be so hard. I’ve read about co-infections and Lyme and related conditions, so I know it's possible ds11 could have other things going on. I think he probably has Lyme because he's had a dozen embedded ticks in the past five years, but I relate to so much in [undiagnosed] ds11 that matches what folks write about their diagnosed PANDAS kids. I hate not knowing what to do or what step to take next. Do I keep pursuing PANDAS, or do I seek out an LLMD? Or both? I have good insurance, but I don't make much money for traveling and paying without insurance. I desperately want my son back, but with so many possibilities, I don't want to waste time. Time is really critical, and I'm trying to trust my instincts. It seems every situation is a bit different for each PANDAS kid/family, so I keep telling myself we have to find the way that works for us, even if it might seem crazy to or wouldn’t work for others. For now we’re trying natural treatments, one substance at a time, because maybe seeing the effects of each substance will point us in the right direction. It’s my firm belief that if we are on the right track, we will see some improvement. And so far these have yielded steady and clear results [in order of treatment]: B-complex vitamins, probioitics, extra thiamine, grapefruit seed extract [major herxing on higher doses, no herxing with steady lower doses], omega-3s, magnesium, and enzymes [3 days so far]. I’ve been learning about herxing, but Sammy Maloney improved very quickly on Augmentin if I recall correctly. [Did he even do any herxing?] So I think when a diagnosis is correct, the treatment will show clear results within a reasonable time. I researched dilated pupils [ds11's symptom when raging] and discovered phenol poisoning/sensitivity. Phenol can accumulate in body tissues, and build-up of this substance can occur if the body doesn’t have the needed enzymes to eliminate it [which fits why his rages seem random, but I always saw a correlation between when he ate junk food and was “out of sorts.”]. And symptoms are a bit different when categorized as “sensitivity” versus “poisoning.” His symptoms match phenol poisoning closer than anything else (except for Lyme). So the longer his body ingests phenols [and salicylates], eventually they reach toxic levels. My mom keeps a food diary, including when he rages/argues, when he goes to bed/wakes, what he does during the day, etc. We've noticed a very strong correlation between when he has ketchup (tomatoes are very high in phenol), and raging within several hours. We've eaten organic food most of our lives, but phenol occurs naturally in many foods, like tomatoes, apples, berries, etc. A few days ago he started the chewable TriEnza enzyme product. We’re not sure if it’s working or not. He’s also been on grapefruit seed extract for a few weeks, but my mom was worried he wouldn’t take the enzymes along with the GSE, so we took him off because she didn’t want to battle him again (which I understand), but now I have to find another way to get GSE (or another antibiotic) in him. He’s raged more often being off of it. Ten days ago I started him (secretly in juice) on magnesium which is supposed to help Lyme and is a natural stress reliever. It has had a noticeable effect. But ds11 can taste it, and sometimes we can't get any in him at all [and his mood is worse]. Every day he refuses something, and since he can’t swallow pills, our natural treatment options are very limited. Sorry this is such a long and random post! It's late, I'm weary, and I'm waiting for my mom to tell me ds11 is finally asleep. It's typical for him to get to bed at 1:00 a.m. or later. He's so hyperactive and argumentative at night [which I believe is also a Lyme symptom?]. I don't remember reading if PANDAS kids do this, too. And he wakes up around 8:00 a.m. every day, no matter when he gets to sleep. This has been such a nightmare all the way around. Anyway, thanks again to all of you for sharing. I’m sure we all wish there was a simple and quick answer to help our kids; instead it's a long and winding road - if we're lucky enough to even find any roads to take. Hopeful thoughts to all, SearchingMom

Hello, Thanks to you all for the explanations! The tests were run by a pediatric neurologist (who doesn't believe in PANDAS), but I was glad to get the bloodwork done in any case. Tomorrow we're going to an immunologist who is supposed to be versed in PANDAS, and I'm hoping he will be in synch with your comments on these titer numbers. We have not done the Cunningham test yet, so perhaps this dr will help us get that test done, among others like a full immunity panel. At the appointment, should I insist on abx even with the titers so low? Unfortunately, my ds11 does not have any documented strep infections, but he had asthma from ages 5-8, and he was on steroids those four years. Thanks again, SearchingMom