Claire

Heather, My Mott's applesauce container that I am looking at is Cinnamon Applesauce, in the lunch type individual container. It says "High Fructose Corn Syrup". I don't know the label requirements, but I would surely hope that they must call it corn syrup! So I think you should be okay with the type that you got. The Feingold literature says that manufacturers don't have to list BHT as an ingredient if they just use it to preserve the oil, versus add it separately, but that is different from food, given all the allergies. My son improved from his reaction to the applesauce, then had no-wheat pizza for dinner, and reacted even more. Oh dear, that had tomato sauce (another salicyte). Heather, if you aren't aware, Feingold says some kids have issues with Salicytes. I know that Jeff who posts here has kids who do). He has been having a little corn flour each day, and icecream and milk once each, so I don't think it is dairy. He said he would try basic foods again tomorrow and be more careful to reintroduce them. Claire

Jean, As Chemar implied, the probiotics must be labeled active or live to work. If your son won't eat yoghurt (mine won't) Whole Foods carries it in a refrigerated case. They even have one to be take with antibiotics--it must be 1 hr before the antibiotic, or the antibiotic will kill the probiotic! Ronna/Robin Re food elimination testing. I know the BRAT diet for stomach flu (bananas, rice, applesauce and toast), and I gave him applesauce today. Within a couple of hours he said he could feel the 'flinches' start to come back. Unfortunately, it was Motts, so I don't know if it is the high fructose corn syrup or the salicytes in the apples. I gave him regular applesauce later. I hope it isn't the salicytes, as strawberry smoothies are the only way I have found to get the contents of 11 pills in him daily (4 of them are the calcium supplements--and quite big). My question for you two: When you tested your children's sensitivities, did you wait until all the symptoms were gone before trying another new food? Doris Rapp just discusses a new food daily from what I remember. But was that enough time? Then if there was a reaction, did you try a week later to make sure? From what Sheila said on peanut butter--she recommended a good sized dollop. I did that with TV many times until we both had no doubt of the cause and effect. All, We got back from our family doctor and he is convinced it is a bad flu--he said food poisoning doesn't last this long. He saw a poor 3 year old bedridden for a week that they did put on an IV for fluids. My son was actually walking around a bit this afternoon, but still not much appetite or thirst. The silver lining: because of this shift from no symptoms to symptoms, my son finally acknowledges/agrees that foods can be a trigger! Just now, he reluctantly agreed to try one new food at a time and that yes it was worth eliminating them. Even though it doesn't always result in visible flinches, he can 'feel' the difference in his physical comfort. But it reinforces realize that this type of testing really needs an elimination diet as the starting point (as Dr. Rapp says), because several foods may be a trigger, and you would not necessarily see improvement by just removing one. Oh, that is so tough for a child though!! I need to get out Doris Rapp's book again tonight! Claire

Robin, I don't remember hearing whether your son's tics ever improved after he drank the milk that time, you sounded so frustrated. How is he doing--from your post he sounds much better? I know what you mean about the triggers--it is a trade-off. Ideally we rebuild their immune systems and/or detoxify them so that neither are necessary, but I think Iwould be okay with some supplements and less lifestyle changes (ie avoiding foods and TV/Computer in my son's case). I still don't know how one avoids both corn and wheat with a child--such a challenge. Are the products labeled 'corn free'? As for going out--that and school are our biggest challenges. Claire

Jennifer, This is so good to hear, and I know EXACTLY how you feel re the calm, I feel the same way, though set-backs try my patience considerably. You have done so well on your own, far far better than most parents I would say, but the vast majority of us just can't take this on alone. Too many facets and customization and best order of approach. Unfortunately, I think the name "DAN" has limited the number of people who approach them. I would never have contacted one except that Sheila Roger's comments that the protocol and diagnostics were the key. As for the highly functioning Aspergers, well, I would give you the credit for the 'highly functioning' part--for all you have done so far. Thanks for posting the details. These are things for the rest of us to note. I am sure that each DAN doctor has their own contribution to make and new things they have uncovered, given how early medicine is on this process. How frustrating re the faulty test results interpretation!

Searching, I recommend going to the Tics/TS thread. It is a much more active board, with lots of discussion on supplements. SInce OCD is often comorbid with tics, there is actually more discussion on it there than here. http://www.latitudes.org/forums/index.php?showforum=1 Claire

Jean, I always wonder if the antibiotics cause some yeast reaction, contributing to the increased ticcing immediately. Are you giving him probiotics with the antibiotics? Even my Ear Nose Throat doctors recommends probiotics. All, I think my son may have turned a corner today! He can now barely walk across a room, but at least he did so unassisted-three time today (bed the rest of the day) After Sunday and Monday only eating a serving of icecream, he even got down 4 small pancakes this morning--nothing since. He has only had 2 cups of water today though. Remember, I was just praying for improvement. Hmmm, as of this morning and progressing this afternoon, I have a stomach flu of sorts (I have never had one, though I had food poisoning twice). Odd, so maybe it was a stomach flu after all. Can't touch food, but setting an example by drinking water, even though it hurts! No worries about me though, I am healthy as a horse. Oddly, in contrast to Jean whose son ticced worse during his illness, my son has had zero neurological symptoms in the 3 days with no food and in our 'air filtered' house. (Other than delayed sleep, but that could be from laying in bed all day). Also, it has finally been 4 days with truly no wheat (vs at least some) and there is finally a noticeable improvement in his excema--though more to go. I actually let him watch TV (on an LCD monitor of course) for 90 minutes 3 days in a row, and have an additional hour of computer today (also LCD)--sort of an experiment. Now he is listening to Harry Potter book tapes. ADDED NOTE: I just checked in with him and the added hour with the computer definitely set off some neck flinches. He notices the immediate change also. Not sure if it is the extra time, the computer game vs a TV show, that it is a different (older) monitor without the brightness down, or that he views TV from across the room. In any case, he has never done more than a 1/2 hr of computer on the LCD in years. Bummer. Other than the computer time, I actually feel like we just did a major elimination diet/environmental control case on what triggers things for him. Often, with no exercise, he minimally gets fidgets or some touching habit, making this even more interesting. In other words, he usually does poorly with 'rest', so I don't think the improvement is due to the rest--but rather the avoidance of some trigger. He notices the improvement also. Since we have stopped the supplements for a few days, I can't necessarily credit them at this time--can't say for sure though. He was actually more fidgety on his trip--but there was a ton of carpeting everywhere. Now if I can just keep our school daycare guy from bribing him with candy to help him clean up when he returns to school! The man is great, but that really rubs me wrong. We never do this! Claire

efgh, My son doesn't have asthma either, but we are both less stuffy. I have zero doubt that a kid with asthma would have clearer airways. Remember to wash bedding and vacuum his bedroom frequently. Chemar's concern with the polyurethane was for general health/tics, not asthma. It is cautious to try the cotton brand. Both are the same effectiveness in dust mite reduction--you can ask the manufacturer for details. My concern is your son's comfort. The cotton guard is more comfortable and quieter--I don't think anyone who has used both would debate that. That is why they cost more! Claire

efgh, I don't understand the technology, but I assume it is in part due to the tightness of the weave. That is a very respected company and the products are lab tested. This is newer technology, only availabe in recent years--thus accounts for why I used those hard to wash membrane ones for years. As Chemar said, the other type can make you sweaty. I used to be a chemical engineer and 'diffusion' means that the plastics do get into the air, even if they are solids. Doris Rapp doesn't even like plastic water bottles for this reason. Though I still use them for portability and non-breakability--I haven't found a glass alternative. Claire

efgh, My understanding of National Allergies' cotton guard covering is that there is no membrane. It is only made of cotton and polyester. To me it felt just like a cotton, albeit not a soft knit one. It was hard to believe it was mite proof. The ones with a membrane were a pain to dry--I personally used them for years, and the water would sit in them even in the dryer. Claire http://www.natlallergy.com/encasings.html Luxurious, membrane-free encasings for cotton-lovers, now with a tighter weave! You'll love our ultra-soft, cotton/polyester encasings. They're made from a generous 60% all-natural, Pima cotton fabric by Milliken. While they are downy-soft to sleep on, the fabric is so tightly woven that mite allergen can't pass through. Washing only improves the barrier quality of these durable encasings. Our ultra-comfortable, lab-tested fabric creates a perfect barrier to dust mite allergen to protect you while you sleep. Covered by our Lifetime Warranty.

Heather, I just read a post of yours that I somehow missed re your adding antioxidants. I tend to think that these all work in conjunction (certainly that is what my DAN doctor thinks), and wouldn't be surprised if the antioxidants combined with the NDF did make a difference. I know that it is virtually impossible to know for sure when you mix supplements, but I tend to look at changes in my son (good or bad) when I add something new. I will ask my DAN doctor about both NDF and Threelac. Unfortunately, I must now wait 3 wks+ for the visit, given the delay in the heavy metal blood test. Too bad he doesn't do the hair test. I would like to get a through yeast test for myself. I am sure I had it in college, and don't know if I have some low grade version now. I know that I have more energy when eating low-carb, which is also low sugar though. If I can't easily get the test, then I may just try Threelac and no sugar for a time. Claire

efgh Can you repost the brand of magnesium taurate that helps your son? I can't find magnesium taurate at Whole Foods and must look it up on the internet. We skipped the melatonin tonight, and as sick as he is (and in spite of being in bed all day he only napped 1+ hrs), he still took 2 hours to get to sleep!! Chemar, Are the items that you mention at whole foods? Thanks in advance, Claire

Very very interesting Heather! Remarkable actually. Kind of changes thinking on TS a bit. As I said before, this kind of thing fills me with hope for my son. I really like the fact that this helps with 'habits' also. Claire

Heather, that is absolutely wonderful news re the years old habits being dropped and general improvement. Wow! And please don't stop giving the positive news. On this thread we honestly care about eachothers good news--after all, it is our children's lives we are discussing! Jennifer had a similar success with her son's habits with detox, and Chemar with her varied program. It actually is highly motivating to us to believe that we can make a difference in our own children's lives. We need to know that this can work, to stick with it. My son occasionally has some touching habits, and though no one but me and he notice it when he does I do hope he also sees improvement there. I am just being forced to be 'patient' with these set-backs and waiting for the yeast program and ultimately the heavy metal. With my husband's caution and the recent set-backs, I dare not start anything without this doctor supervising each step right now. I want to ask my DAN doctor whether the effectiveness of the detox/yeast etc... programs relates to age. e.g. Should an adult with tics/TS do this program, would it be 'too late' to see improvement in symptoms. Hmmm... You are lucky to do this so early! Claire

Thanks Jean, Well, I want him tested for crab allergy then. Though that would be a shame. Crab was to be his 'reward' food for not having wheat each week! So sorry about your son also!! 8 days is such a long time. ( I will say prayers for him also, I already said one! What happens when/if our kids miss this much school in middle school? Claire ps I think maybe my husband is starting to realize it wasn't the supplements. pps bummer that we need to wait another week for the heavy metal test. Not exactly the best time to being drawing blood from the poor kid.

Hi all, Thanks for the warm feedback. We haven't started treating the yeast directly yet as the DAN doctor wanted to build up the antioxidants first. So yeast die-off can't be a factor at this time, unless the probiotics has some impact. Though thanks for the feedback on watching for weakness for yeast die-off. A reminder to take it slowly. Well, after hearing the 3 of you mention incidents where multiple people had the same food but only one got sick, perhaps it is the crab. Here are my 2 worries: 1. I wanting my son to show some sign of getting better--still only 8 oz of water today and I pushed really hard to drink. Sometimes he starts taking these deep breaths for a few second and says it is hard to breath. He did have a couple of light non-wheat cookies just now--the only food all day. 2. My husband seems convinced now that we shouldn't do supplements anymore (I talked to him again since I posted). Funny, because his first reaction when my son had tics (before I figured out the computer was triggering them) was to go to a neurologist and get him on some drug for it. Because thank goodness it was a 3 month appointment wait for the neurologist, so I had time to figure things out first! As you can tell, he is conservative in his medical thinking. It is tough enough to do this without having him putting his foot down saying no way. Jean, I tried calling his pediatrician too repeatedly this afternoon and couldn't get through the busy signal. Unbelievable. Heather, Here is the link and the quote on probiotics--it is from the iherbs site Chemar mentioned I know it sounds dramatic, but I think my son, like some other's on these boards, does have some issues with his immune system--ie he gets sick more frequently and get sicker than most other kids. So the only supplement that ------------ http://community.healthgate.com/GetContent...d=/tnp/pg000209 Safety Issues "Probiotics may occasionally cause a temporary increase in digestive gas, but beyond that they do not present any known risks for most people. However, individuals who are immunosuppressed could conceivably be at risk for developing a dangerous infection with the probiotic organism itself; at least one person taking immunosuppressive medications has died in this manner." ------------- I just talked to the nurse at urgent care. She said we would have seen a reaction to the probiotics in 3 days, so that wouldn't be it. She said the supplements couldn't have done this (which I told my husband to no response). She said it sounded like food poisoning. He is still so weak and dizzy he can't stand and had diarhea. He drank 8 ounces of water and didn't eat all day and the nurse wanted me to get him into the ER tonight to get an IV in his arm to get him fluids! This scared him drinking a glass of water, and another since then. She says if he keeps it up 4-8 oz every hour til bedtime (and keep it down)then he doesn't have to go in. However, he is having regular difficulty breathing (shortness of breath) which isn't improving). If this doesn't improve, we may be in urgent care later tonight anyway. Not sure where the breathing issue fits in. Just this minute he threw up again--trying too hard with the liquids. But the fluids helped, he could stand on his own! --- Claire

Hi all, We just got in from vacation this morning. For Thursday, Friday and Saturday, my son had either no supplements or 1/2 a dose. Saturday night he had no melatonin either. Then in the middle of the night Saturday (ie Sunday am) he started vomiting a ton. Then repeated it for 5 times through the night and first thing the next morning. He had crab (which he loves and has never had a problem with--but the wheat allergy is presumably new also). My husband had some of the same crab (from my son's plate) with no reaction. Can kids get food poisoning when an adult doesn't? He had a ton of wheat for the 3 days prior (because this was his 'last hurrah' with wheat). Now he ate nothing but a little bit of icecream yesterday, and 2 glasses of water and drank 1/2 glass of water today. My husband assumes it was the supplements and wants to stop everything! I know it could be the flu, but he hasn't had a stomach flu ever. For 2 days he can barely leave his bed--I must help him to walk across the room! He seems no better after almost 2 days. I will call his DAN doctor tomorrow (he only works TWTh). Anyone had violent vomiting during detox? I don't think this is it, but I had read that one man died from probiotics--the bacteria he was supplementing took over or something. Something about it could be bad for compromised immune systems. Too many factors! I just want to see some improvment... more prayer appreciated! Claire

efgh Did you get the cotton guard quality level from National Allergy supply? I got the mattress covers and pillow covers and they are quite soft and not noisy at all. But I use regular sheets and comforter (and wash weekly) so the allergy sheets don't touch his skin. I say return them if they are uncomfortable! Way to expensive to be interfering with comfort. Claire

Sorry Sheila--I edited my post above to remove my misinterpretation of your statement, it is always dangerous to speak for someone else anyway and I hesitated doing so! Are you saying that peanut butter can set off tics in some children, even though formal tests show no sensitivity or allergy? You mention cotton seed oil in peanuts. Well, now that my son has a known allergy to peanuts, I amazed to find that many packed cashews have peanut oil added intentionally! It drives me nuts. And try to find a power bar that isn't made on machines that process peanuts...but that is another story. Claire

Heather, some of this discussion is buried deep in the restless calming agents thread http://www.latitudes.org/forums/index.php?...topic=375&st=15 We are down to 1/3 mg per night of the melatonin (The tests on kids are at about 6 mg/night). With 1 mg he was drowsy the next day, at 1/3 mg he does great. I agree with Chemar--only try this with a doctor's advice, and even then do your research--since it is a hormone. I consider it 'transitional' for our son. It seemed to catch the last of his fears remaining from their onset at the last strep infection, though I don't know why--his doctor said maybe because it is an antioxidant, so it is helping with his general deficiency there in rebalancing his system (my layman's interpretation). I tried to get magnesium taurate at Whole Foods, but no luck yet. efgh has had luck with this one. From what I understand, not just with 5HTP, that what works for one child can have the opposite effect on another, so some trial and error is involved. I actually bought the epsom salts but he still refuses to take a bath with them. Claire

Cinderella, Chemar raised a good point about Sheila Rogers...Actually I think Sheila has just set something up where you can buy consultation for 1 hr (3 20 minute sessions) for $90--I think the idea is for her to direct you how to get started and not to offer 'medical advice'. You would have to check pricing and policies with her (I don't have the Latitudes issue where she listed the new program). I assume she may have started the fee structure to be able to accomodate more people, as you can imagine how time consuming that could be for her to be helping the individual posters while she maintains this site and holds another job. I would have paid for it in a second, for the leads she gave me. Claire

Nancy/Heather, I edited this post to delete my erroneous explanation of Sheila's comments--so that I don't confuse the issue! Sheila put down her actual intended remarks below. Claire

Hi Heather and Chemar, Here I am at a local hotel (while they do our floors), with my son and I listening to Harry Potter. The local connection through the hotel phone worked--I never know for sure. Chemar, it never occurred to me to check out the plastic braces, what a clever idea. I asked once (just out of curiousity) and the orthodontist said you must go slower with them. My son has had these on for 1.5 years and they should have been off by now. Grrrrrrr...the bands kept coming loose and cutting into his gums, and with appointments 6 weeks apart we lost time and took off the one band until it healed. We have an ortho appt tomorrow and I will see what the doctor says. I think I will need to find out the content of the braces and have the heavy metal test. I think we have already spent $3500 and insurance only paid $750. So any changes would be more money. I don't care about money versus his health, but my husband watches money carefully so I would have to justify it. I am sure that he would still have the metal bands though, so I don't want to slow down the process--plus I just think the whole braces thing is bad news for him. His teeth are pretty straight, it is mostly his bite that is off and that can also cause teeth grinding and bad oral health if not taken care of. They said it is easier to do just movement at an early age. My son uses plastic utensils now that he has braces. He says the silverware touching his braces is just awful. Heather/Chemar, I just offered my son epsom salts in the hotel bath and got an adament no. Oh well. Heather, I personally think that Adam's peanut butter (I get the kind with salt) tastes better than the other brands like Kraft and Jiffy. But I have an adult's taste buds. I think mostly it is what they are used to. You can always start with 25%new/75% old if he is really picky. Patience isn't my thing, but I am learning. I just read more of Doris Rapp and she says a metallic taste in the mouth is a sign of chemical sensitivity. Claire

Heather, Thanks so much for the info on transfats! We don't give them to my son (I was the one that posted that), but only started this healthier practice a year ago--it started with cholerestol concerns with us parents. Also until uncovering his wheat allergy 3 months ago, he still got it daily during snacktime in school aftercare. I am especially worried about my son's braces. Maybe this is contributing to heavy metal build-up. Both Chemar and Sheila Rogers have commented on braces contribution to either tics or OCD, I can't remember which. My son says that on occassion, he gets this awful metallic taste in his mouth--like when you chew on foil with fillings. We have had delays upon delays in his ortho. progress. My son is now allergic to peanuts, but prior to this he ate Adam's peanut butter (and Laura Scudder before that). I don't think they are organic, but at least there are no partially hydrogenated oils in them. You might wish to try them if you haven't. If he doesn't like it, then perhaps mix 1/2 and 1/2 of each and slowly reduce the Kraft PB portion. A pain, but this has worked for me for other things. Thanks for the Threelac info also. I should probably get the book that Chemar recommends. Our ENT doctor said you had to cut out sugars to get rid of yeast--did you do this? Claire

Cinderella, I noticed that you asked about a 'real' doctor. I should note that within the DAN list, they will note if the practitioner is an MD, if that is important to you. Claire

Hi Cinderella, I have started with a DAN doctor (many of whom are MDs) who ran my son through a series of non-invasive metabolic tests (except the blood test is semi-invasive) to see what underlying imbalance were causing his symptoms. Many here have found underlying health issues for their children and used that info to help their children improve considerably. The benefit of a DAN doctor is that they have established a protocol with a battery of tests for the most common underlying conditions, such as: vitamin deficiency allergies yeast heavy metal toxicity low antioxidants gluten/casein issues I am doing this and so far have had good luck with insurance coverage. To check out the practioners in your area, go to: www.autism.com/ari. Click on DAN on the left, then find a doctors in your area. Others here use naturopaths and homeopaths and have had great success--the only problem there is that I don't know of a general source listing for those familiar with neurological issues--maybe someone else could suggest one. There is also a list of Environmental doctors at aaem.org. I cross referenced that list and found a doctor on both lists. If you will read through the posts here, you will notice that many of our kids with tics had similar health issues and saw major improvement with supplements and detoxification. This is why I personally decided to go through full diagnostic testing. Many of us have had success without pharmaceuticals. I believe that you must wean your child off the medicine though. Chemar knows about this. I am headed out to vacation, good luck! Claire