Dara

Jeff, I'm going to go ahead and join. Thanks for all the information. Dara.

Hi Everyone, I've heard about the Feingold diet and have done a little reading on it, but I don't know anything about the Fail Safe diet. Am I spelling that correctly? My son Karl is on a no sugar, no dairy, no eggs, no oranges, no food coloring, no preservatives all organic diet. I've heard that if you join Feingold, they tell you what brands to buy etc. Would I be able to give them a list of what my son can and can not have and then they tell me what to buy???? I assume this sounds too good to be true. And what is the Fail Safe diet and how do I learn about it? Thanks, Dara

Can any of you answer these two questions: 1. Wheat/Soy: Our son Karl did NOT test positive to wheat or soy in the IeG blood test. Although the results showed that he didn't have a reaction to these two things, could he still be allergic to them? Should I keep him off of them as a precautionary measure? or is that silly? 2. Fluorescent Lighting: Our basement has a drop ceiling with fluorescent lights. I tend to think that these lights could be a trigger for my son. If not using fluorescent lighting, what type of lighting is recommended for children with this sensitivity? Thanks a bunch, Dara

Hi Everyone, DAY 4: I don't think I'm ever going to turn my TV back on again ha, ha. This is fantastic. Day 4 with no TV has come and gone with no problems. As many of you can see from some of my previous posts, my son's tics have been at their worst during these last four days. I think the reason for that is that there are/were many triggers that might have influenced the flair-up such as: starting new supplements on the same day as taking the TV away, being exposed to things that Karl's allergic to (i.e. dog & mold), having a cold, etc. Starting tomorrow, I'm stopping all the new supplements and will see if the tics diminish. Dara

Marina, Don't ask me why I introduced all these things at once. I stopped giving Karl the B6 today and will stop the zinc tomorrow and also the other one with the echinacia. Could you please tell me what salycilates are? I keep hearing about them. I think I better start reading up on the Failsafe diet also. As for the Rice Milk, here are the ingredients: filtered water, cut organic brown rice (partially milled), expeller pressed high oleic safflower oil and sea salt. Although my sons tics are not good these last four days, the no TV is going great. Look for my daily posts. Thanks, Dara

Frank, It's funny that you mention the chemicals in school. I just mentioned to my husband that during the 2 1/2 hours each day that he's in school, Karl's teachers clean the desks with bleach. I always smell it in the hallway when I go to pick him up. I'm going to talk with his teacher tomorrow. I don't think this is the reason why he had the flair up but it could have added to it. Thanks for the information. Dara

Hi Jean, I have heard of the P5P but didn't know what they were. I'll look into it. Also, my son was tested for heavy metals and the only one that came back elevated was 'Cadmium'. I contacted a DAN doctor yesterday to get a second opinion. Dsra

Hi Everyone, I wanted to get some opinions on the following items listed below. Just to refresh your memory, our son Karl Henry, who is 5 years old has been under the observation of Dr. Majid Ali (Denville, NJ) who is an environmental MD. Our son had bi-lateral eye blinking for five months before full blown facial tics appeared one day in April 2004. Since that time we've seen numerous doctors and Karl's tics have waxed and waned from minor to severe. Finally in November, through the help of 'Latitudes' I found Dr. Ali. After running initial IeG blood tests for food intolerances and inhalent allergies and running and organic urine profile test, Dr. Ali determined he had food sensitivities, inhalent allergies, yeast in the gastrointestinal tract, etc. Dr. Ali put Karl on a strict diet, started sublingual drops for the inhalent allergies and started a supplement program. By mid December, we noticed great improvement. It was the first time since April that we saw his tics become minor to on some days almost non-existent. We've stuck to the diet and kept up the supplement routine since that time. There were a couple of cheating days (minimal cheating, one cookie, two slices of turkey cold cuts, etc). On January 19th we noticed a new tic - lip sucking (hard to explain). We saw some other tics such as coughing, clearing the throat, etc. We were in Florida two weeks ago and home last week. By This past Saturday, his tics increased significantly to the point where he now has a coughing/clearing the throat tic that happens about every 5 - 10 seconds, along with a severe 'head cocking forward to the chest tic' that has made a red spot on his chin, eye blinking, nose twitching etc. He's such a mess. We feel so bad for him. Even his teacher noticed them today. When I went to school to pick him up his teacher just looked at me and said 'My heart aches for you'. Obviously she had the opportunity to watch him during class and felt bad for him. I'm looking for advise on the following possible triggers. Any information would be helpful: 1. No TV: Today is our 3rd day with no TV. I'm pulling at strings right now, but could he be detoxing from TV??? 2. The only vitamins I've added since Saturday are the following: -One supplement that contains 200 mg of Echinacea, 150 mg Golden Seal Root, 150 mg Astragalus Root, and150 mg Burdock -100 mg of B-6 (he's already taking a multi-vitamin that contains the following B's): B1 2.5 mg B2 2.5 mg B6 2.5 mg B12 3 mcg -50 mg of Zinc -2 Bromelain chewable tablets ***** I increased Karl's B-6 and Zinc because I read that it helps vocal tics. I forgot to mention that he also has a new 'humming' tic (you've probably read about it in my previous posts). Some of the B's cause hyperactivity and could possibly increase tics, right? Do you think the extra 100 mg of B6/day could be a culprit? 3. Karl's been drinking a lot of 'Rice Dreams' regular rice milk (not the enriched one). 4. Karl's been eating a lot of 'Earth Balance' natural buttery spread. It's non-dairy (Karl's allergic to dairy, thus also the rice milk). This stuff is made from expeller-pressed natural oil blend (soybean, palm fruit, canola seed and olive), filtered water, pure salt, natural flavor (derived from corn, no MSG, no alcohol, no gluten), soy protein, soy lecithin, lactic acid (non-dairy, derived from sugar beets), and beta-carotene color (from natural source). He loves butter and margerine. I thought this was a good alternative? 5. Karl was exposed to Chlorine when we were in Florida Feb. 13th - 19th. We noticed that his 'lip sucking tic(s) were a little worse after three days of exposure. We've been home for over a week now, I doubt it's the Chlorine? 6. Karl and his brother Graham, both had what appeared and still do have colds, that started in Florida. No fever, just a running nose (sometimes slightly yellow or green mucus) and minimal cheast congestion. 7. Karl was exposed to my sisters dog for almost 24 hour period when we got snowed in at her house this past Thursday night. Karl's allergic to dogs. 8. Exposure to natural gas. We found a small gas leak in our home that we think has been there for several months. This might add to the tics, but we were in Florida that week and he was still having them even though he wasn't exposed to the gas. I know many of you are probably laughing and saying 'Is she serious'? I know that these all could be triggers, it's just that right now there seems to be so many things. I'm just looking to see if anyone else had come across these things. I will have to say one thing, as bad as Karl's tics have been these last couple of days, I somehow feel strong. Normally I'd be crying my eyes out. Yes, I have that sick feeling in my stomach and don't want to see my beautiful boy in pain, but I know there must be an explanation as to why all of a sudden the tics have gotten worse. We had a bad outbreak of tics in Sept. and early December and as you probably know, just when you think they'll never go away, they somehow disappear. I'm hoping this is the case for us. One more note and I'll sign off for the night. I sent Karl's urine off to Bio Center Lab in Wichita, Kansas today for the 'Pyroluria' test. We also had blood drawn today (we haven't had it done since Nov. 2004 when Dr. Ali ordered the IgE test). Our doctor also ordered a stool test for parasites and a urine test for Lyme disease, in addition to a Strep titer, test for an auto-immune disorder, rhumatic fever, and maybe a couple of other ones. It's been some day. Take care all. Dara

Great Advise Marie, OK, so you bought a juicer and you throw carrots and spinach in it and your son drinks it just like that???? Wow. I'm impressed. I just recently added more B6 because I heard it helped with vocal tics but maybe I should think twice since his tics have gotten worse within the last 2 or three days. The part about me being stressed out. Before any of this happened I already had a type-A personality. Unfortunately, it's the only way I know of dealing with this situation. I obsess about the 'what if'. What if Karl's tics are so bad, he can't go out in public, get a job, get married, have friends, etc. I just keep thinking what a condition like this could do to a person's self esteem. Me and my husband are always there for my son Karl and his brother Graham. We love them, kiss them, do everything with them. I've never cried in front of him. In fact, he's never mentioned anything about his tics, not once. I think he knows he's different than other kids, but he's never asked. He does know that he has allergies (food and inhalent) and doesn't hesitate to tell people that he's allergic to this and that. He's such a great kid. I will never stop trying to find a solution to our situation. Thanks for your advise and for listening. Dara

Hi Everyone, DAY 3: Well, once again it has been really easy to take the TV away. This was our first day without TV before school. I let both of my boys sleep a little later then usual. Haven't noticed any improvement in Karl's tics. In fact, today they were once again pretty bad. Keep in mind that Karl's tics have been fairly good since the middle of December. He did start the lip sucking tic back in January, but it wasn't terrible. What we've seen during the last three days has been very bad. Saturday it was the worst, and then yesterday they cleared up a bit and today bad again. Even his teacher (pre-school) noticed them. So, unfortunately we haven't noticed a change so far, but we keep praying. Dara

Hi Phyl, My son's Organic Acid Profile was done by the Great Plains Laboratory, Inc. I don't know if your son's test was done at the same place but two compounds listed under the 'Yeast/Fungal' catagory came back high. The first compound was 'citramalic' which the normal range was from 0.0 - 2.0. My sons score 3.79. My doctor explained the elevated level as a yeast/funal overgrowth of the gastrointestinal tract. The second compound was 'arabinose' which the normal range was from 0.0 - 47.0. Karl's score was 1934.9. This number was explained as a result of the Clostridia bacteria species including C. difficile (I think the 'C. difficile' is also a bacteria that can cause diarrhea). Our doctor prescribed as you said the Culturelle Lactobacillus GG. One capsule per day which equals 30 billion cells. Our son has been taking the Culturelle since mid December. As for the homeopathic remedies, we had Karl on the Pleo-Pef for a couple of months last summer when this whole thing started and didn't keep him on it long, because we didn't know what we were doing and just ran from doctor to doctor. Dara

Hi Marina, I'm so glad that I've gone through with the 'no' tv test. As you've been reading from my posts, our son Karl and two great months (Dec. & Jan) with limited to minor tics. It was the first time that we saw improvement since it all began last April. I'm hopeful that we will get there again. As far as the gas leak is concerned, I really don't think it's the cause. I've been smelling gas on and off for months. Don't know why I waited to so long to look into it. So, I think it might be a factor including some other possible triggers: Just comming back from Florida a week ago, exposure to Chlorine, having a cold/virus, not sticking 100% on the diet, missing several supplements on Friday, being exposed to dust and a dog, etc, etc. As my yesterday post said, we did see a slight improvement yesterday (Sunday). Saturday was by far the worst. I'm keeping my fingers crossed. Dara

Cheri, I'm trying to access this link with no success. I went to braintalk but couldn't find this particular post. Could you please help me out? Dara.

Hi Everyone, DAY 2: I can't believe how easy this is. Something that I anticipated as the worst thing to do was the easiest. My boys only asked for the TV once today and I reminded them that it was 'broken'. No questions asked. Karl's tics were a little better today. Thank-god. Yesterday was like something out of a horror movie. I think it was a combination of things and today we were strict about no tv, taking all of our supplements and sticking to our diet. This week will be no different. As a sidenote, as with all kids who have a tic disorder, most tics are increased by anxiety, anger, being excited, etc. Is there any supplement in particular that can help with this situation? I noticed my sons tics came on stronger late this afternoon while riding in the car to go sleigh riding. I also notice his tics come on stronger when I drop him off at pre-school. Anyway, the no TV experiment is going great. Dara

Hi Everyone, I've heard that B6 and Zinc are good to help combat vocal tics. Does anyone know the right quantity to give a 5 year old? Our environmental MD didn't know anything about it. She did prescribed 25 ml of Zinc a day to counteract a 'cadmium' metal overload that was discovered through a 24 hour urine collection. Thanks, Dara

Phyl, Our son Karl first of all never liked dairy and hasn't had any dairy for three months, so I can't correlate dairy intake to the new humming tic. Do you like in NJ? Our son is currently under the care of an environmental MD who also discovered from an organic urine profile test (first morning urine) that Karl also has a yeast/fungal overgrowth of the gastrointestinal tract and Clostridia. How is your doctor treating it? Ours put our son on Nystatin - 1 tsp 3X's day. He takes it two weeks on and one week off. I'm really interested in this topic. Do you know of any qood books I could read about it? Dara

Andy, My husband tends to be the strong one in this situation. (Although I know he breaksdown sometimes). I'm the emotional basketcase. I'm sure you feel as I do about finding this website. It's a godsend. Dara

Cheri, About the 'humming'. Since I first noticed it this past Wednesday night, I still really only hear it when I'm reading to him at night before bed. It's usually when he's quite, which during the day is never, ha, ha. As a side note, Karl hasn't had any dairy in three months. I agree with you about tryin not to get some upset about the current tics he's having. He's not injuring himself, thank god...Can you imagine how I'd be if that happened. Take Care. Dara

Kim, Tell your son that I think he is so 'COOL'. I hope Karl turns out to be that confident. As you said, you must be so proud of both of your boys. I'll keep in touch and thanks so much for your words. Dara

Sarah, It's funny how similar our sons food intolerances are. My son Karl tested positive for cane sugar, milk, eggs and oranges. Cooking and shopping are difficult. Karl also tested positive for fungus, mold and yeast which he is taking subligual drops to cure. It's a guessing game and we as parents just have to keep looking for the answers. Dara

Robin, I wish I could say my son's tics were a result of dairy, but he hasn't been on diary for over three months. It's so hard sometimes to figure out what is triggering the tics. I think my son's curent outbreak of tics is related to being in Florida all last week, the warm weather we're having in NJ and not staying the his diet 100% last week. Dara

Hi Jean, The weather in NJ has been so strange. Last week we were in Florida and this week we're home and it's snowing. Trying to find the 'triggers' are so difficult sometimes. Dara

Hi Everyone, DAY 1: Since this was for me the hardest thing to do, but the most obvious, I thought I'd start a new post and document the next seven days of our 'No TV Trial'. It started this morning with our three TV's being 'broken'. How amazingly easy it was. Not one question was asked from either Karl Henry, who is 5 yrs old or his brother Graham who is 3 1/2 yrs old. I will say, that for those of you who have been following our saga, our sons tics have been really good over the last two months. Since being put on a stirct diet and taking sublingual drops for allergies, his tics improved tremendously during these last two months. About two weeks ago I started seeing some of them come back and TODAY was by far the WORST day we've had in two months. I will over the next day or two attempt to identify what changed in his diet or environment to make his tics come on so strong. As a sidenote, we had the Gas Company come to our house today to check for a gas/CO2 leak. I've smelled gas over the last couple of months on several occasions. The technician did determine that there was/is a gas leak in our fireplace and from our furnace in the basement. I'm interested in seeing if there is any impact on Karl's tics once these leaks are corrected. Thoughts? Dara I'm determined to keep my spirits high. Talk to you all tomorrow with day two of 'NO TV'. Dara

Alison, Our first morning with no TV went amazingly well. Unfortunately, my sons tics are terrible this morning, so all I've done is focus on him and not that the TV is turned off. God give me strength. We were supposed to be having friends over for dinner tonight, but I don't feel like it at all. I really pray that we see some improvement by the end of next week. Dara

Jean, Hi...Our son Karl has been totally off dairy for three months now. He never liked it to begin with so it was easy for us. You're right about sticking together and being strong. Sometimes it's just so hard. Keep in touch Dara