lurker

Jewels, I have seen a THEORY that yeast (candida) actually serves the purpose of trapping heavy metals in the gut, so when it dies off they are released. I will try to find the source for you. I think the author's point was to kill yeast off slowly.

Emma, I let the experts answer first, because I don't have a PANDAS kid. I really believe that all kids with tic disorders, no matter the origin, are very immunologically sensitive. Like I said, my kid is not PANDAS, but I can guarantee you that if he got a nasty infection like strep, he would start ticcing again while his body dealt with it. I think these things disturb their little neurotransmitters or something. One thing that really jumped out at me from your post is your description of her illnesses. I really think what you are witnessing is the difference in recovery between "minor illnesses" and "really ill." It will probably just take longer this time. Tami

Ruby, You have inspired me to call my ex-ped's office and demand that his reaction (within 48 hours of vaccination) be reported. I know the CDC will most likely discount our claims, but the numbers will speak for themselves. He very convincingly assured me that it was mere coincidence and had nothing to do with the shot. I have often wondered if he really believes that. In either event I can't trust him. What treatment protocol are you following for your son? You mentioned detox. Thanks. Tami

Heather, Great idea, Heather. You are right. I haven't seen it discussed either. I have only discussed our diet changes and supplementation, but when my son's tic disorder started, I implemented a new behavior plan in my household for both of my kids. I have always wondered to what extent it has complemented his recovery. I had read somewhere that all children with anxiety issues -- and I consider tics to be anxiety induced -- benefit from quick, predictable discipline. It is less stressful for them. I accidentally stumbled upon a book in the library which I based my plan on. When I say "accidentally stumbled," I think there was some divine intervention involved. This book was in the wrong wing of the library when I found it, and I wasn't looking for a behavior plan. I am excited about your success with this therapy. I think my son may be too young for hypnotherapy; he just turned five. Having said that, I think that there are applicable behavior strategies for kids of all ages, and they are definitely natural treatments. Why don't you start a BEHAVIOR THERAPY thread. I would be happy to discuss this in more detail there. Tami

Nan, Thank you. Calicat, I peel and freeze banana too. If you use frozen berry or banana, you don't have to add ice, which dilutes flavor. I somehow think that the low temperature helps to hide supplements too -- Its like it confuses the tongue! I have found a use for overripe bananas. My kids are low sugar, so I make cookies sweetened with banana. Overripe ones work best. Betty, Tomorrow, I will post a banana-pumpkin cookie recipe for you since your little one is not allergic to either. I should warn you, my kids call them "poop cookies." This just speaks to their color. They still beg for them! Tami

Jas, I would love the discount site info. I have allergy results back so I am ready to order vitamins. Are you supplementing mag and zinc separately. I mentioned in the other thread on this subject that it looks low in mag (which is good because I like Natural Calm) and the copper/zinc ratio was high. So I am going to bump his zinc up too. Thanks, Tami

Betty, Icees are just ice cubes and juice slushed together. Smoothies are thicker and I usually don't use ice. I usually use frozen berries, I save the fresh ones for snacks. Trader Joe's and Whole foods sell organic frozen berries. The banana is the single best ingredient. It adds a sweet taste and it thickens the texture so that a dairy product is not needed. When I started, I was using rice milk or soy milk. Now I just use banana. Go poke around a Jamba Juice. Grab a menu and watch what they are doing behind the counter. The reason I bought the Magic Bullet in the first place is because my kids were Jamba Juicing me to death. They wanted to go all the time and it is a very expenive snack. Let me know if you don't have one and I'll pick up a menu. Apparently it takes a very long time to get gluten out of the system and repair the damage. We have been gluten free for about seven weeks. The tics consistently waned. I may see one or two tics a day now. They are isolated events. When they started to wane I noticed that his boredom/watching tv/going to bed/eating tics went away first, while the extreme excitement ones were more persistent (fear/anxiety/playdates/Chuck E. Cheese). Now those have waned too, although I am not brave enough to take them (He has a 7 year old sister) back to Chuck E. Cheese. I think it can sometimes take months to see a difference. This is not a quick fix. Tami

Betty, After seeing Caryn's reorganization of your allergies, they were a lot easier for me to make sense of too. I see a lot of smoothies and icees in your future. I would run out this weekend and get a Magic Bullet (I have mentioned this product before. I have no affiliation with the company). I think Hamilton Beach makes a knock-off too. They are so much more convenient than a blender because you can make individual servings. They come with about 8 mini-blender cups and you can rinse them and put them in the diswasher after use. Smoothies will be your best friend when you are hiding supplements in foood! They are sweet and colorful so most kids love them. Here are some suggestions: Banana-berry smoothie Orange-banana smoothie Carrot juice Icee Peach-applesauce Watermellon Icee I also use it to hide "green" foods. I pulverize them beyond recognition and sneak them into rice (quinoa works too). If it looks too green, some carrot will neutralize the color. I think you are wise to start with the gluten. I will be surprised if its not the first thing out of the DAN doctor's mouth. My test results were faxed to the doctor several days before we received them in the mail. He called me between patients to tell me not to give my son any wheat products. We have actually been gluten free for about a month and a half, based on suspected intollerance. I was still shocked when I saw the results last week. His wheat gluten and gliadin were not just high, they were literally off the chart. It is very difficult, but it does get easier every day. Tami

Heather, When I became obsessed with changing my family's eating habits, I tossed all of the "McFood" from my pantry -- canned goods, condiments, sauces, cake mixes . . . I still feel bad about that and wish I had donated them to a local shelter. I think it never occurred to me because I viewed it as hazardous waste. And I really wish I could use almond flour, but the Little Master is allergic to almonds! Tami

Thanks. Caryn, when you mentioned Ghee, I remembered reading somewhere that Cheri makes it. I know it is butter that is heated and has the foam scraped off the top. I would love to make it with butter sticks from Costco as I am paying $10 a jar for Ghee. Cheri, if you are out there, what is your technique for making it? It does not have to be precise for my purposes as my son is not casein sensitive. I just like the idea of reducing dairy as much as I can so he can fill his quota on cheese. Tami

Caryn, Was Tigger sensitive to milk on his allergy test? What level? Or did you just decide to do the CF with the GF? My little man tested at the low end of the "insignificant" range for all the cow and goat dairy products except yogurt. Also, I didn't realize that you cut eggs out for a time. What can you teach me from that experience? We tested moderate to egg whites and low to yolks. Remember how excited I was about pineapple being one of his most significant allergens? You know, because it is so easy to avoid. Well, I just realized his favorite gluten-free bread, the reasonably priced one from Trader Joe's, is sweetened with pineapple! I just ordered a bread maker. Apparently it has a gluten-free setting. Do you use a breadmaker? Do you have any successful eggless recipes? Tami

I have been researching anti-inflammatory diets for several months now, and there seems to be a lot of conflicting information, for example, regarding oils. Cheri, you probably know more about this and have had more personal experience and professional guidance in this area. You have mentioned before that your son's existing successful diet and supplement protocal had to be reformulated due to his Crohn's diagnosis. Could you give me some tips on pro-inflammatory foods, anti-inflammatory foods, supplements that are beneficial, supplements to avoid, lifestyle changes, etc. that specifically support autoimmune and inflammatory disorders. I have already removed all of the artificials and all of my son's allergens (per testing). I have a consultation appointment with a nutritionist next week, but I really value your opinion. Thanks.

Betty, I got mine back too. 16 items. Four were high: gliadin, wheat gluten, lemon, pineapple. Five were moderate, among which were peanuts and eggs. Seven were low, among which were oats, oranges and yogurt. I looked at your list and it is extenive. I am really not the person to address this because I am new to it. But I have been told that when the gut problems are addressed, many of the sensitivities are reduced or negated. Things that are a problem now, won't always be. I think you will probably be asked to remove all major offenders and use a rotation diet for the others. My son's doctor suspected dysbiosis (gut problems), so I would assume that your profile is similar. Also, again I don't know much about your test results, but I did look up the bun/creatinine ratio, and I would try not to worry too much about that while you are waiting to see the doctor. I noticed from your earlier posts that the little guy was fighting a virus at the time the test was performed. That may have thrown off his ratio. Tami

Emma, I saw it too. My first reaction was, "So now they want to put uranium and plutonium together and inject them into babies." This one really scares me.

Faith, Lampshade in the funeral parlor -- No. But, in all fairness, the opportunity has not presented itself. Let's make sure they don't end up at the same college. We should even go as far as keeping them in different fraternities just in case their chapters meet. I don't want him near my daughter either! Tami

Faith, I too have had visions of my son and a keg. I can envision him lying upside down under a keg and then jumping off a roof into a swimming pool. When he was three, he tried (actually he succeded) riding a scooter down the slide. My husband and I have since joked that if Nickelodian ever does a pediatric version of "Jack***", we will audition the boy. Tami

JUST MY THEORY (please don't flame) I think most of our kids have unusual immune systems. Everyone has antineuronal antibodies to some degree. Maybe our kids have a tendency to attack themselves when their immune systems are activated. Any flu, cold, or stressor overactivates their immune system. Exposure to very bad infections (strep) heighten the response even more. Suffering a childhood disease, even higher. Vaccines that contain both virus/bactreia and adjuvants (a chemical that basically screams BOO! at your immune system and purposely stimulates it to overreact) do this too. It doesn't surprise me that antibiotic use often helps. It is like adding troops to your army. Antibiotics are probably better able to direct their attack on the enemy instead of committing friendly fire. I do believe there are real cases of PANDAS, but I would assume that non-PANDAS kids would respond unfavorably to a strep infection, as well. (Cheri, would your son have exaccerbated symptoms during a strep infection?) I also believe that antibiotics help a lot of kids. They prevent them from getting sick, therefore keep their dysfunctional immune systems at bay. I have been tempted to try a course, but the long-term effects are unknown and scare me. Building up a resistance and needing more scares me too. For me, after a lot of consideration, I think the answer is to try to modulate the immune system naturally. I think that by providing optimum nutrition specific to the individual, removing their known allergens, and reducing the unnecessary stress in their lives, they may not overreact so much when they are sick. They may be less susceptible to getting sick too. Annonymous

I know most of you are in a different time zone and it's late, but if anyone can address this I'd appreciate it. My son's tic disorder has been slowly waning in the 5 months since its onset (two days after the DTaP). It's so mild now that I am the only one who knows. He has been saying he has a sore neck for several days, and was only too happy to tell me it was because his sister choked him . Anyway, he was on my lap today and turned his head. I saw a bulge in his neck. He has swollen lymph nodes on both sides of his neck (approx 2 to 3 inches below his earlobes). One side is slightly bigger than the other. I know it is some kind of immune activity, but any ideas? Thanks, Tami

Hi Ruby, Welcome. The fever that Kelly mentioned jumped out at me too. No matter what variety of tic disorder your son has, it seems that illness will cause a temporary increase in (almost) all kids that tic. You also just stumbled upon something I learned here. Tests are not run for tics because, "It's just a tic; It will go away, or it won't." Tests are run for eczema and stomach problems though. Is your son still six, Ruby? And if I may ask, when was he last vaccinated? Tami

Tracey, Just a thought. I have read some hypotheses that tics are related to restless leg syndrome and also stuttering. In fact someone here had a transient stutterer. Anyway, something you said reminded me of stuttering, and it sounds like he is stuttering with his eyes instead of verbal blocking (probably a good thing). I think stuttering almost always happens under a similar kind of pressure to speak, read, perform or reiterate. I think it almost always goes away too!

Nan, That's complicated. I know that according to numerous sources, the RDA for magnesium is too low and we are all probably deficient. I know that magnesium and calcium compete with each other. The present RDA is a 2:1 ratio for calcium to magnesium, but you need to look at her calcium intake -- cheese, yogurt, milk, . . . I know that b6 and zinc are somehow related to magnesium absorption or utilization after reading Bonnie Grimaldi's hypothesis 17 times. (She is brilliant. I wish she would drop in from time to time.) I think maybe a b-complex is in order as well. Hopefully somebody more informed (KIM) or experienced (KIM) or well researched (KIM) will be able to answer you. KIM!!!!!!

Heather, I am so excited about your son's MRI results. Thanks for updating us. I thought about him all week. Your story really gives me a better understanding of how a neurologist can say, "It's just tics." As far as family history goes, yours sounds pretty benign to me. I try to remind myself we all have mutations in our gene pool and every family has THAT relative. Have you given him any magnesium yet? Let us know what the doc says on Friday. Tami

Jasminky, I am so excited about this. I liked the fact that it has low magnesium, as I like the Calm products and want to supplement magnesium separately. I have two minor concerns: First, the high copper/low zinc ratio. It is my understanding that zinc is somehow necessary to b6 and magnesium utilization and that copper competes with zinc. It won't stop me from ordering the product. I will just tweek the zinc. My other issue was the recommendation that the program begins with a one week megadose and then decreases to a maintenance dose at one half. I would strongly suggest that you consider ignoring this and starting very slowly. I really think our kids are intensely sensitive to changes like this. (Just my opinion.) I would have ordered today, but I am still waiting for allergy test results and I don't want to make any further investments until I know what he is sensitive to. Let us know how she responds. Tami

I saw a bit of CNN this morning. The parents of a little girl who reacted to a vaccine at 18 months have won a lawsuit. The judge acknowledged that the vaccine triggered her subacute predisposition. Her family will be guests on Larry King tonight.

Cheri, I just ordered from Natural Candy Store. Thank you. I am so excited about the natural food colors. I have been experimenting with green in my lab (kitchen) using crushed spinach and algea. Feel free to mock me, but I WILL publish a successful green frosting recipe before St. Paddy's Day!