ntbowen

I have been reading back posts trying to get a handle on the difference between stimming and tics. There are some behaviors my son exhibits that definitely seem like tics (sniffing, vocal sounds, repeating sentences, jerky arm movements), but at other times it seems like self stimulatory (hand flapping, jumping...etc.). He is a little touchy feely and can be a little aggressive at times (which seem to have to do with OCD at this point), but ohter than that he is very social, funny, and although a little moody that is kept in check by keeping the offending foods away. When we tried Bonnie's program, it was a disaster. We did it for a month, but I have never seen him more unhappy, moody, aggressive, and added some new tics. When we have tried the vitamins with the increased B by Kirkman (Super NU thera) which many of the spectrum kids take with a lot of sucess, it works wonders for his mood, but his tics (what I recognize as true tics), get much more jerky and pronounced. I guess what I am trying to say is that I don't think we necessarily always fit just into the Tourette's category and maybe we are dealing with a little PDD as well. We may be dealing with a little of both, and that's why I am having so many problems getting these vitamins right. Right now he is on a normal mulitvitamin from Kirkman, and we give him TMG which seems to help a little (maybe), fish oil, digestive enzyme, and a daily probiotic. We just started seeing a DAN doctor which is testing for yeast and heavy metals. Does anyone have any advice vitamin wise for me or know anyone who has dealt with ASD and Tourettes. If we are dealing with ASD, it is so mild, I don't think anyone would ever diagnose us that way. Thanks for listening. Also one more question. My son is only three and 1/2, and we are considering putting him in an Emerson Waldorf preschool/ I really want/need to go back to graduate school, and need childcare. Does anyone have advice on what the best schools are for our kids?? He has been in a church preschool, and assimilates pretty well. Although he is a little different, the kids liked him. His touchiness got to them sometimes, but it went pretty well. Thanks.

Oh I forgot to mention that we did the pyroluria test and our result was a 2. I didn't take him off vitamins, but it doesn't seem to be a problem.

Thanks all for the advice. Cameron (since he is allergic to corn) doesn't eat any artificial colors, flavors, ANY corn products whatsoever so I feel like we are already on the Feingold diet. All we eat are organic meats, organic veggies, orgainc fruits, lots of different beans, brown rice, rice crackers, cashew butter, rice milk, and real potato chips (with sea salt and real potatoes). I even make my own pizza crust with rice flour. We eat no gluten, caesin, whey...etc. We did notice a significant improvement with the milk elimination and of course corn since it actually came up on a scratch test. Unless salicylates are a problem for him (which we are giving him phenol assist once a day), then I have no idea. We did eliminate the salicylates for over a week and saw NO difference and then added them back and no difference. The IgG test might show some additional sensitivities. He is definitely suffering from allergies. He also has a dust mite allergy, but we have dealt with that pretty well with covering beds...etc. "Is this your Child, " describes my child for sure. We have just eliminated so much now, but now all the sudden in the last month it is so much worse. The aggression is out of hand. I will go back to my old vitamin plan for a week and see what happens, and try to add things one at a time. OCD definitely seems to be more of a problem now that we are on vitamins which I feel like has a lot to do with not being able to keep his hands to himself. He gets stuck a lot lately on certain topics too. Is there anything I could add to help with the OCD part. Thanks for listening. Natalie:)

Thanks all for the advice. Cameron (since he is allergic to corn) doesn't eat any artificial colors, flavors, ANY corn products whatsoever so I feel like we are already on the Feingold diet. All we eat are organic meats, organic veggies, orgainc fruits, lots of different beans, brown rice, rice crackers, cashew butter, rice milk, and real potato chips (with sea salt and real potatoes). I even make my own pizza crust with rice flour. We eat no gluten, caesin, whey...etc. We did notice a significant improvement with the milk elimination and of course corn since it actually came up on a scratch test. Unless salicylates are a problem for him (which we are giving him phenol assist once a day), then I have no idea. The IgG test might show some additional sensitivities. He is definitely suffering from allergies. He also has a dust mite allergy, but we have dealt with that pretty well with covering beds...etc. "Is this your Child, " describes my child for sure. We have just eliminated so much now, but now all the sudden in the last month it is so much worse. The aggression is out of hand. I will go back to my old vitamin plan for a week and see what happens, and try to add things one at a time. OCD definitely seems to be more of a problem now that we are on vitamins which I feel like has a lot to do with not being able to keep his hands to himself. He gets stuck a lot lately on certain topics too. Is there anything I could add to help with the OCD part. Thanks for listening. Natalie:)

Hi! I am relatively new to this forum. I have posted before about my son Cameron who is perhaps the youngest victim of Tourettes (he's three). We are at are wit's end right now. We have an appointment at the end of the month to test for heavy metals, yeast, IgG...etc. We have a corn allergy for sure, but also don't do milk, wheat, aritificial colors or flavors, and are VERY strict. Food elimination really helped at first, but now the tics are worse than ever and his behavior is so hard to handle. He is currently taking Bonnie's Vitamin regiment which is NOT helping at all. In fact things seem to be worse with new tics. We were just doing flax oil, but we just started the fish oil. We also do a digestive enzyme, probiotic, aloe vera juice, phenol assist, extra Mg Taurate...nothing is helping. The only time his behavior was better was before Bonnie's we had him on Kirkman's Super Nu Thera which had P5P which I am convinced must have helped him. However, I noticed his movments seemed more jerky four hours after the vitamin. Then I heard about Bonnie's and thought that we should try this...it is not working for us. That is a little background and the vitamins are very tricky for us currently. We are also treating for yeast with probiotics and a product called "Yeast Aid, " by Kirkman. This could definitely be making things worse as well. My main reason for writing this is to beg for some advice on discipline issues. We are moving back home next month to Raleigh, NC, but Cameron is currently is a preschool and having so many issues. He is a little aggressive and has a hard time keeping his hands to himself. The other kids like him the teacher says, but he annoys them a lot because he is so touchy. We know he has sensory integration issues that need addressing more, and we will be seeking more OT when we move. He is also very aggressive. If he thinks someone is not going to let him play...etc. he is after them. Everytime I pick him up from preschool he is in time out for "bad hands." He can't control this behavior, but we are in SC, and the teachers don't know the first thing about these issues here. Since we are moving I haven't even told them about our new diagnosis. I feel like he is being punished for things he can't control, but I want him to be disciplined for inappropriate behavior. He also is terribly aggressive to his sister (one year old). Everytime he walks by her, he knocks her down, hits her...I am going crazy at home. I get so angry that he is so aggressive, and I know to some extent he has no control, but I cannot let him hurt his sister either. It's very hard. We only do time outs for hitting at home, but nothing has worked for us. If anyone has any suggestions to help him in preschool (we are moving and are going to be getting a fresh start), or at home ( I don't think I can't stay at home if he continues his behavior...it so hard), I would greatly appreciate it! Natalie

I haven't stopped Bonnie's yet, but am considering giving individual vitamins after a few more weeks of this trial. We are also giving him two probiotics at bedtime for yeast. He is taking Pro Bio Gold from Kirkman which is their most popular one. His stools are loose again too...maybe his body is getting rid of yeast. I don't know if giving him two of these will actually get rid of yeast, but I've heard to give two at bedtime for two weeks....what do you think? Maybe this is making his symptoms worse. Yesterday the tics were so bad. We were trying to make cook something for Thanksgiving together and he couldn't even help because he was so excited repeating things over and over, tensing, making his long vowel sounds...it was so sad because he was just excited to help me. It seems that everytime we try to do something fun together like that, the tics just take over.

Claire, you had mentioned zinc??? How much is recommended per day? I've heard people give this at bedtime, is that what you do? He's getting 10 mg in Bonnie's per day already and he is almost 40 lbs. Since we added digestive enzymes we thought things were getting better, but today they were worse again. Thanks. Natalie

Dust mites are definitely a big issue with us too! Quick ? I have pillow encasings on all our pillows. I have been just letting him sleep on that instead of putting a pillowcase overtop (it's pretty soft so he doesn't mind). Should I be doing this and how often do you wash the encasing?

Sorry, I keep forgetting to log in!

Claire, are you a member of Delphi forums? www.delphiforums.com. If you go to this site, there are numerous support groups, but one is called "Avoiding Corn." It is an amazing group of people who can answer almost any question regarding corn and corn derivitives. I don't know what I would have done without them when I first found out about my son's corn allergy. Cellulose can be fine, but you have to be sure of the source...it definitely can be corn derived and is on my list. My son seems to react to all corn derivitives such as Xanthan Gum...etc. A lot of food says, "corn-free" but they can label this even if the ingredient is corned derived. For example, many products that have Xantham Gum label corn free, but it is grown on corn...my son reacts to it. You may know all this, but I thought I would share just in case. If we get corn, it's a nightmare around our house. I think maybe we should try the rotation diet because I feel that since it was eliminated, now we are more sensitve to minute amounts. How do you do your rotations? As far as the yeast goes, what would be the dosage to treat? He is 38 lbs. I really want to treat him for this? How long do you have to stay on it? I don't know if Nystatin is corn-free. Every medication on the market that I know has some sort of corn derivitive so I just assumed that would be out of the question. In fact, we get our sons Advil and Benedryl (for emergencies only) compounded in to be corn-free. Thanks so much for you suggestions, and please if you have any more send them my way. It's nice to meet someone else who deals with corn...so many issues it seems sometimes!!!! If you learn anything on Nystatin, let me know. Thanks. Natalie

Thanks Heather for your reply! What could we do to treat the yeast? We have him on a daily probiotic. Kirkman makes this product called "Yeast Aid" and I know some have used it for yeast. I don't think we can do nystatin because it contains corn products. Thanks

Hi all! I really need some advice. I posted last week as a new member. My son is three years old, and I believe we are the youngest case of Tourette's ever! Maybe not, but I haven't met anyone dealing with these tics so young. In my previous post, I noticed tics since he was seven months old. He did this arm extension tic where he would tense his arm and bear down sometimes all day long sometimes not at all. He had TERRIBLE acid reflux as a baby, spit up all day long, and we thought even back then that the movements were due to the stress of the reflux. As he got older he did some sniffing, facial grimacing, whole body tensing, jumping up and down when excited or stressed which can happen all day long. In fact, we have not ever had a tic-free day. The vocal tics started when he was about 2. He talked in full sentences when he was two, but a lot of repeating his own words and others. However, he did have his own sentences, he would just get "stuck" a lot. I found that distraction could break the repeitition, but then sometimes he would get stuck on the distraction. He has always been extremely moody as well, but when he's happy he is great fun...everybody loves his personality. He is also incredibly smart, and was just tested with a verbal IQ of 140. At first they thought maybe Asperger's, but definitely not now that they have seen wonderful social skills. His biggest problem in the social arena is his need to touch, and sometimes aggression with other kids especially his younger sister. However, we just had him tested six months ago for allergies and he was highly allergic to corn and dust mites, and eliminating that has been such a blessing. We took ALL corn and corn derivitives (thanks to the corn forum) out of his diet, and covered his beds..etc. His mood has dramatically changed. He used to wake up from naps unconsolable, he wouldn't let you touch him, difficult with transitions...it was so hard. He only had a scratch test, but was not allergic to milk or wheat. However I thought for sure milk would have showed up (I am going to have the IGg done soon) because the child would drink milk and eat nothing but yogurt all day long if allowed, his terrible reflux as a baby. He was exclusively breast fed until eight months, but I never eliminated anything from my diet (terrible mistake listening to doctors). Nevertheless, his disposition has changed dramatically since these dietary changes. I don't know if the wheat has any real affect, but definitely the milk and corn. We also don't do any artificial flavors, coloring, and if any of you have also truly elimintated all corn dervitives, you know that it is easy to eliminate all perservatives because you can't buy anything processed whatsoever. Our diet is extremely limited. We eat meats, fruits, and veggies, and I make soups. That's it. I make all my own bread. Last week, we eliminated screens for a week. We never did a lot of TV in the first place, but we didn't see any difference. However I will say that he is much fussier if he watches TV. We used to let him watch a morning TV show before school, but I stopped this long ago because he would get so grumpy. This happened long before I knew anything about TV and Tourettes. We only let him watch one hour of TV on Fridays as a treat. We have just started trying to eliminate salicylates this week. He used to eat tons of raisons, grapes, tomatoes so we'll see if this makes a difference. How long should we do this before we see if it does? We also started Bonnie's Vitamins four days ago which is the real reason for this email. Does anyone know what the sources of cellulose and silica are??? Sometimes these can be corn-dervied and yesterday my son has some diarrhea. As anyone with a corn allergy knows, things can be corn-free but almost everything is dervied from corn. I need to know the sources. I will email Bonnie unless someone knows here. Before Bonnie's we had him on Super Nu Thera by Kirkman (these are a multivitamin which large does of B6 and Mg), and instantly we saw a more content child, but it did little for the tics. Sometimes four hours after taking the vitamin I would notice his tics being more jerky which concerned me. That is why we decided to go with Bonnie. Bonnie's actually contain less B6 than the SNT. So far (only four days later), I haven't noticed in decrease in the tics, but maybe an increase in vocal things (lots of vowel sounds, getting stuck). Because my son is only three, we have been using flax oil from Spectram Naturals (one T per day) instead of the fish oil. I just found some liquid fish oil from Kirkman that I am going to try now. The only other thing he gets are a probiotic (one in the morning). Should I do anything else for yeast? He has been heavily dosed with antibiotics since his premature birth. My son weighs 38 lbs. We can go up to 10 pills of Bonnie's per day, and are doing six right now. I am really worried about his vocal tics right now. We have an appt. with an allergist Dec. 1st who will do the yeast, glutothione, mercury, IGg tests...etc. I want to get that done. I also have a pyroluria kit now that I will do. Does anyone have any suggestions?? My sons tics are at their worse. Should I try carnitine??? Everything we try has to come in capsule form and broken into a drink. We also are doing Rice Dream, but it contains so much sugar that sometimes I think that makes his tics worse. However, I have to be able to give him something to drink to mix his pills with. My family thinks I'm totally nuts and overboard so I need some support and help from you all! Thanks so much, and I really apologize for making this so long. I just thought the more details you had, the better you could help! Natalie

I'm sorry for all your frustration. I am new to this forum here too. My son was just diagnosed with Tourettes (well the docs are pretty sure), and my attempts at helping him sound a lot like yours. If you see my post from last week, you can read some of our background. My son is only three years old, but we have seen tics for a long time now. We eliminated corn after having allergy testing done which greatly improved his disposition (he just felt better and his stools finally became solid). After reading in great detail about milk and wheat, we gave that a try too. We also think this helped some and have continued on this diet. Then we started vitamins. We originally started with a product called the Super Nu Thera by Kirkman because at the time we also were worried about a possible Aspergers. These vitamins are a mulitvitamin with a very high dose of B6 and Mg. Our son became much calmer and immediately would play by himself in his room. They definitely made him more content, but no change in tics. In fact, my husband and I were a little skeptical if they acutually made the tics worse. His normal tensing movements and grimaces seemed more jerky after about four hours after taking the vitamin. Now we are pretty sure that we are dealing with Tourettes, and have decided to switch to Bonnie's program which is geared toward Tourettes. Bonnie thought maybe the B6 was too high which could increase the tics. We just started yesterday, and have seen nothing yet but are praying that they help us. We just recently started him on a probiotic from Kirkman called Pro Bio Gold, but I think we may need to be more aggressive than just adding a probiotic to really get rid of yeast. My son has lived on antibiotics since he was born prematurely, and many ear infections so we think yeast could be a problem. Sounds like you are on track with some alternative approaches. We also give him flax seed oil instead of fish oil because he can't swallow the pills but are going to switch him when we get a liquid version. There is a lot of talk about getting rid on mercury and other heavy metals which seem worth exploring. It can be so overwhelming to do this by yourself so I definitely think working with a doctor on these alternative approaches is a good idea. We are in the process of finding one now. Please let me know what you discover works for you son. You will find many people helpful on this post. I'm probably not the one to give advice because I am so new and experimenting myself. I feel your pain though, and can understand what you are going through. Feel free to email me anytime.

I know it's early to diagnose, but we were desparate to figure out what these movements were and kept taking him in. In fact, the ped. neurologist we saw at Duke Hospital since he was seven months (trying to figure out some strange mouth movements and arm extension movements- we noticed tics very early on) said he would just basically keep an eye on him until he starts school. It wasn't until recently we got close to the diagnosis...it is still not coded as Tourettes, but as some coordination disorder. No one is quick to diagnose, but there are sure now this is what we are up against. My husband also has tics but so mild that he has just learned that his behaviors are tics. I guess most people don't start with the tics until later, but we certainly did. I am wondering if this makes are case more severe. ZI also have a one year old daughter. We have all benefited from knowing early on already because we are doing OT, starting various alternative treatments...and NOT punishing him for behaviors we now know he can't control.

Hi! I am brand new to the forum as of yesterday. My son who is three years old was just diagnosed with Tourettes and I am desparate for help. He has had tics that I know of since seven months old. He started with arm extensions at this point and tensing his body in a bearing down kind of motion. Even at the young age, he would do it many times throughout the day, and then none. As he got older he started the sniffing, then facial grimacing, jumping up and down, elongated vowel sounds, repeating phrases over and over again getting stuck...etc. These happen all at once sometimes. He was five weeks early, and in the NICU for three days on room air an antibiotics. He had terrible acid reflux until we finally put him on Prilosec. His dad has a few mild tics that I have just found out about. They are so mild that he has hid them from me for seven years. ON my side we have bipolar, maybe undiagnosed OCD, ADHD, lot of drug additions. My son is has trouble with sensory integration which we work with an OT on. He has a need to touch, and this can make others think he is aggressive which he is sometimes. On top of that we knew he had dust mite allergies for some time, and treat him for asthma, but we found out he has a corn allergy by a scratch test. We have eliminated all corn from his diet along with Milk and Wheat (because he had abnormal cravings for these foods and were desparate to try something). He finally has had normal stools (the first in his life) after this dietary change. He is definitely sensitive to food and his tics are worsened by foods (especially chocolate). When he gets corn, he is literally drunk, hitting, won't transition...etc. I have also put him on a vitamin (hypoallergenic Super Nu Thera from Kirkman Lab) that is a basic multivitamin with an very increased B6 and Mg. It hasn't really helped the tics, but he is calmer and for the first time he will actually play by himself. He has been on these vitamins for two months, and they definitely make him more content. That is really all I can say for them now. I didn't know about Bonnie's until now. I think I should try to fish oils too. Because he is three, he can't swallow the fish capsules...does anyone know a hypoallergenic liquid form I could add to drinks. I can't help but think because we do see a difference this could have something to do with vitamins. He tics everyday, but some days worse then others. I ordered the Pyroluria kit to try. Should I take him off these vitamins for the test? Bonnie doesn't endorse these vitamins because she thinks the B6 is too high. I think he gets about 125 mg a day of B6. He has always been a big kid despite his prematurity (90%). I greatly appreciate you listening. Anything you can suggest would be greatly appreciated. We live in Myrtle Beach, SC and there are NO resources here that I know of, but we are moving back to Chapel Hill, NC in January. If you know of anyone to test for vitamin defiencies, I would be so happy! I feel like we need to do this! Thanks. Natalie

I am a newcomer as of yesterday. I wanted to ask about the T.V. problem. My son watches T.V. for an hour every afternoon and does not tic at all watching. Is it that it is worse after watching??? I was a little confused. I am still very overwhelmed by all this. How do you get tested for yeast. Will an allergergist do this testing. We have only had allergy testing done by an allergist (scratch test) and my son was allergic to corn. We have eliminated corn, milk and wheat now for four months. His disposition is much better and his stools are finally normal, but the tics are still there? Do think we need to have the blood test for allergies done as well? I know we definitely suffer from allergies. He has had a tic since he was seven months old. I posted my story yesterday. We really need some help! Thanks>