Toms_Mom

Pamela Kay, Thanks for your response - my son also had an increase last year in the fall - more like Sept. here though. Samsmom What kind of allergy testing did you have done for the pollens etc. ? We did the traditional scratch test last fall, but nothing came up. However, every fall and spring(especially spring) he gets this cough and congestion and croup. Its got to be something in the air! My older son (17 yrs.) had the same problems every fall and spring, ( actually his was Worse!)but started to outgrow it around 7. My youngest is the only one with tics though. Thanks, Mary

My son has been doing very well with the houston enzymes for the past 4 months- basically no tics. About a couple of weeks ago though he started a facial grimace. I started to panic thinking "are the enzymes not working?" but then realized maybe it could be something else. We are in heavy pollen season here in South Carolina so maybe that could be it? I changed the filters in his air cleaner and have that going full blast now and hoping that helps. Usually this time of year he gets a cough and some wheezing. So far though only the cough-no wheezing and once I started the HEPA cleaner the cough is gone. Also, right before the new grimace started he ran into a metal pole at recess at school and had a huge knot on his forehead. Took him straight to the doctor and he checked him out and said everything looks great - just keep an eye out for certain symptoms over the next 24 hours. He seemed to recover fine from that. I'm hoping that didn't have anything to do with this new tic. Last May was when everything started for us and I am just hoping and praying that we can keep symptoms mild with all of the changes we've made with diet etc. I am such a worrier and we are thinking of changing schools next year so want to do whats best for my son - its so hard to know and the hardest thing is not being able to predict which way this tic thing will go - are most people able to keep things mild with the supplements etc. Is Bonnie's probably the best supplement to go with? Sorry, I am drifting but I have so much on my mind right now! Thanks, Mary

Faith, The shower filter is about 68.00. The replacement cartridges are 42.00 if you sign up to have them sent every 6 months. I just ordered one so I hope we have better luck with it than JBC! We ordered the counter top water filter but it did not fit on our faucet- I should have realized it wouldn't - anyway we thought about getting the under the sink mounted system but I just ended up getting a pur water pitcher and I also buy a lot of bottled spring water. With 4 kids we go through a lot so I'm not sure this is the most economical solution. I've often wondered if getting a water cooler where they deliver the spring water would be a good idea - does anyone out there have experience with this?! Thanks, Mary

Last summer I did a little research and ordered the aquasana shower filter- we have been happy with it and it was easy to install. The replacement filters are a little costly though. We are probably due for one now. I would also like a recommendation for good spring water! Mary

We tried the p/n method last summer and not only is it expensive, but very time consuming! My son was found allergic to 3 foods and we did the shots for about 2-3 weeks and it didn't seem to help and he hated it so we quit. A month or so later we did the IgG testing and the results came back with him allergic to 14 foods so it seems the p/n method is not as reliable- at least in our case. The p/n testing takes so long it really wasn't possible for us to test 115 foods like you get with the IgG testing. But we did test some of the foods using the p/n method and he did not show an allergic reaction, but they came up as allergic on the IgG. It really can get confusing. I think the best advice I can give is to go slow like Jules said. Get the Hepa filter and the water treatment system first and then go from there. Those are things that are going to benefit your entire family. Removing dairy made a big difference for our son. Then see how adding the probiotic and other supplements help. Only add one supplement at a time. Keeping a diary is essential in the beginning. It really helps for you to see what is working and something to keep to look back on. I use a notebook and on the first page I write the date and what he had to eat that day for meals and snacks and what supplements I gave him. Then on the back I would rate the severity of the tics or other issues like if he wet the bed etc. Remember when they eat an offending food it stays in their system for 3 days so you could see a reaction for that long. Hope this helps. Mary

Cheri, How would I know if my son has h pylori? I am confused about how to handle this. Should I have him see my GI specialist or just treat him naturally myself and assume he has it. I don't really have an integrative doctor. I thought about asking my pediatrition about it as well. If you or anyone knows of an integrative doctor who treats tics in South Carolina I would love to hear from you. Thanks, Mary

Hi everyone, Last week I had to have an endoscopy/ conlonoscopy because I have iron - deficiency anemia. I was very surpised to find out that I have gastritis( I have no symptoms) and this was caused by an H pyloria infection. I was prescribed a 2 week course of antibiotics. My question is - I have read that this can be contaigious and am wondering if my 7 yr. old son could have contracted this from me. His only trigger I have found for his tics is several food intolerances. I assume he has leaky gut syndrome and have been treating it with digestive enzymes before every meal/snack and probiotics. Could this bacterial infection have caused his leaky gut and does he need antibiotics to treat it? I read that it can damage the gut lining! Any advice is greatly appreciated! Thanks, Mary

These sound delicious-esp the 'fume salad- it sounds similar to one I had at a party that I loved and never got the recipe for. Thanks for sharing. I love to get new recipes! Thanks, Mary

Caryn, As you might already know we went off the restrictive diet and are using the enzymes- AFP peptizyde and Zyme Prime- I hate to speak too soon - it has only been about 2 months but he seems to be doing well on the enzymes- I have added back in his intolerant foods and as long as he takes the enzymes before eating he has no reaction. I still don't give him a lot of dairy, but started using butter and giving him yogurt about 3 times a week. I read Karen DeFelice's book and it really encouraged me to try them. According to her the longer you use enzymes the less you need them because the enzymes help to heal the gut. I was wondering Kim if you have seen that happen since you have been using the enzymes for a long time? Mary

Calicat Funny you bring up this "night vision" thing- I have had the exact same thing happen to me with waking up in the middle of the night and thinking I see this big spider(yuck!) climbing up the wall and I am convinced it is there but its not! It doesn't happen often, but it sure is scary! My 12 year old daughter does this sometimes too- she gets really scared and seems awake but she's not. As far as the kids calm we did that last summer and it seemed to really calm him down. I was thinking about starting it again but- last week I had a kidney stone- if you're not familiar with them they are very painful to pass and I found out these tend to run in my family. I read on a post somewhere here that you shouldn't take the kids calm if kidney stones run in your family. ( I had been using the natural calm occasionally) The nurses in the hospital told me that children can get them too and mentioned a 12 and 16 year old they had seen recently with a kidney stone. Now my son is only 7 but still... Does anyone know why this was said in the past on this board because I would really like to use the kids calm again but am worried about it? I guess I can always just stick with the epsom salt baths.

Caryn, Thanks so much for that info!- I was actually thinking they were muscle spasms, but now realize he has the periodic limb movement disorder. The interesting thing is my husband has this PLMD as well - He's had it for as long as I can remember- our entire marriage which has been 17 years! I just never thought or worried about it with him. LOL I have RLS- it comes and goes - my sisters and my mother have it as well - we find that if we limit our caffeine to the earlier part of the day it really helps to stop the RLS. I was also just diagnosed with iron defieciency anemia and RLS can be caused by this as well. I am now wondering if this is a heriditary disorder? The PLMD does not effect his sleep- he sleeps soundly about 11 hours a night and the only thing that disturbs his sleep is the night terrors about once a week and like Kim said I always feel like I am on call - I sleep like half awake knowing he could get up and start running around the house and of course worried he could hurt himself. Of course my husband sleeps like a rock. Also, when I just googled the PLMD in children a few articles said it is often a symptom of children with ADHD and when you take care of the underlying neurological disorder it often disappears. My son does not have ADHD, but of course tic disorders are considered to be on the same spectrum. I often wonder though about my sons constant talking. I know this is an ADD symptom. I once asked his teacher if she thought he could have ADD and she laughed in my face. My son is probably the quietest and best behaved child in her class- she actually has him take the other little boys to the bathroom because she said he's the only one she can trust. However, when he comes home he can not stop talking- it exhausts me and he gets bored very easily and wants me or his sisters to entertain him constantly. Thats why I sometimes wonder if he might have a touch of it - or is it you either have it or you don't?! Anyway, thanks for listening. Mary

Thanks so much for all of your responses! Chemar or kkver- how do I know if my son has a possible sulfate sensitivity? We have done the epsom salt baths in the past because I think they help with his constipation which seems to be under control now. Caryn- we have reintroduced gluten in the diet with digestive enzymes. I don't know if the muscle spasms went away during the time we were gluten free because I had sort of forgot about the spasms until recently when he climbed in my bed for a couple of nights. I have been reading your posts about reactions to gluten and he seems to have none of the symptoms you have described. His behavior at school and home is very good and he seems healthy. (One thing, however, I remember you talking about was celiac disease is common among the Irish. My side of the family is Irish - my husband is German.) Pamela Kay - my son does not wear socks to bed- I will try the cold water over his feet idea though! Thanks for your kind words Jenny C- My sister said her daughter had these night terrors when she was a little girl and she never really knew what to do about them. Her daughter has no health issues or tic disorder so I think this is more common than we think and is not necessarily related to TS or tics.

My 7 year old son has occasional night terrors where he wakes up and starts wandering around the house. He seems terrified sometimes and sometimes not so much. He seems awake, but is really asleep. He never remembers these episodes and it is hard to calm him down- he doesn't want to be held and it takes a few minutes to get him calm enough to sleep. Does anyone know what causes these or how to maybe prevent them? His other issue which concerns me more is his muscles sometimes twitch at night. I don't notice this of course until he is sleeping with me and then I get all worried about it. The other night he was in my bed and he had his foot up against me and I felt his foot twitching and then noticed he was sort of having muscle spasms in other places. These are not places he has tics- do not seem related. But it seems like this could be something to do with his nervous system of course. His tics are hardly noticable right now and when I noticed these spasms last summer he was having lots of tics so I sort of thought with the tics calming down that these spasms would as well. Does anyone know what causes these or if it is a symptom of some other underlying problem? I have been so worried about these spasms. Also, I have spasms too, but these did not start until recently with me and I kind of felt like it was my nerves sort of releasing all of the tension I have felt these past months worrying over my son. Any advice with this would be greatly appreciated. Thanks, Mary

Everything you said sure makes a lot of sense. You've obviously been doing a lot of research and have explained your findings very well. I am able to understand more about these issues with the phenols etc. after reading your post! I read Karen DeFelice's book and my 7 yr. old son has been on the AFP and Zyme Pryme enzymes since Thanksgiving. We were having too hard of a time trying to eliminate 16 foods from his diet that he was sensitive to- I now give him enzymes before every meal and am thinking about switching to the Tri-enza(sp?) when I run out. It seems to be working- we only see a tic occasionally- the only diet we stick with now is the Feingold diet and try to eat mainly organic. When we were seeing an environmental dr. a while back he wanted to give my son some sort of vaccine (sublingual and he said just a smigeon- I can't remember the name of it) that he said would shift my sons immune system from reacting allergic- we didn't do it but now you have me wondering if that might be something to consider - your explanation about the higher histamine levels in the bodies of some of these kids really got me thinking!

Faith, I have been thinking along the same lines as you-dropping the milk seemed to eliminate all tics for a couple of months - then did the intradermal testing and he came up allergic to corn and sugar- then did the IgG and he was sensitive to 14 foods including milk. I want to get to the bottom of this and the underlying problem- The foods he is sensitive to are the ones we eat the most of and I have a feeling they will keep changing if we don't rotate and figure out how to heal his leaky gut. I am assuming he has a leaky gut. Is there any test to confirm this - does anyone know? I was becoming so overwhelmed with the menu planning and trying to bake with no eggs, sugar, milk, butter, yeast, or wheat, corn or oats. Then having to rotate the remaining flours- nothing was turning out good and my son was getting really cranky and tired of the diet. I was also worried he wasn't getting enough to eat. So this past week I gave in and we had turkey subs one night and pizza another night( he hasn't had pizza since July) and we had oatmeal for breakfast yesterday. I am giving him the AFP Peptizide enzyme before every meal and (knock on wood) he hasn't had any reactions to these dietary infractions. From what I have read the enzymes help heal the leaky gut and can allow you to have these foods with (possibly)no reactions and over time you need less enzymes and eventually after 6-12 months you can eat the foods with no enzymes. I would like to ask HAS ANYONE HAD THIS EXPERIENCE ? I also realize probiotics and other supplements help with healing the leaky gut as well and we are working on adding everything in. I am so worried right now because I want to do the right thing and am not sure if I am and with no doctor guidance I am always questioning myself. I am still rotating his foods, but am wondering do you still need to rotate if you are using enzymes? Anyone having success with enzymes or healing the leaky gut please write in! Also does anyone know how you actually diagnose a leaky gut? Thanks, Mary

I am wondering the same thing, but it seems like every supplement I find has something that concerns me. I guess there is no perfect vitamin/ mineral formula out there and I just need to pick one and be done with it!

Thanks Patty and Caryn- I appreciate all the advice you have given me- it really helps to hear from people who have been through it- I am just going to tell people he has multiple allergies when it comes up and not worry so much about it. I'm looking into the miss. robens etc. and hopefully once I order everything and find new recipes we can get into some sort of a routine which will make it all easier. Love your blog Caryn - you have some really good info on there and I want to try some of your recipes! Thanks, Mary

I am trying to decide between these 2 for my son. Has anyone tried brainchild nutritional's? The spectrum support II with PAK looks good. Also, with Bonnie's I am wondering about the soy lecithin? If my son is allergic to soy can he have the Bontech supplements? Thanks, Mary

Caryn, I wanted to thank you for all your great advice! I bought the gluten-free gormet bakes bread and the gluten free gormet comfort foods at Barnes and Noble. I also got the lara bars, fruit a bu and simply orange w/calcium. Don't know why I never noticed the lara bars in my many hours scouring the shelves of Whole Foods. It's great to have more things available to pack in the lunch box- that seems to be a struggle - trying to find snacks besides fruit and nuts. But hopefully I will find some good recipes I can start making him from scratch from the cookbooks. He just got invited to a b-day party this weekend and it feels so wierd trying to explain to people about his allergies. For instance, she said they would have pizza and cake and I told her my son was allergic to milk and I could send something for him to eat and she said oh no you don't have to do that - we'll just have chicken nuggets instead (which will have corn and milk in the breading) People will just keep asking what can I make or bring for him and it is so hard to try to explain there is really nothing you can bring except fruit and even then we are on a rotation diet and it really depends what day it is. I guess I just feel unsure about the whole thing and I wish I were more confident in explaining to people what we are doing. I don't know anyone or have never met anyone who has had a child allergic to things besides peanuts. And I really wish I didn't have to explain things to people outside family and close friends. Anyway, I have added the kids calm back in and am looking for a hypoallergic multivitamin w/o the manganese. I guess I should start with that before moving up to the Bonnies( if needed) Thanks again, Mary

Caryn, Thanks for your response- it really helps to hear from someone who has dealt with the food allergies, done the rotation diet and had success- that is very encouraging. Now I am more motivated to stick it out with the diet. The main thing I am having a hard time with is rotating the flours- rice seems to be in every baking and pancake mix, in all the gluten free recipes and store bought breads etc. My son was sensitive to wheat, rye and oat- though rye and oats were low with a IgG of 1. So I am not sure if he is gluten intolerant or whether he will be able to rotate it in eventually- I certainly hope so. We are giving Kirkman probiotics and I am still not sure about the vitamins though he seems to be doing well (light or no tics) when he has not had any reactive foods. I am worried that he isn't getting enough calcium with no dairy products allowed and thinking of ordering the bontech just to make sure he is getting everything he needs. I just don't think it would be necessary to give 8-10 a day. Patty, I did look up a NAET practitioner for our area a while back after reading about your success with it, and there was only one and her address was a home so I just wasn't sure. If I had a good recommendation for one I would be more likely to try it (We live in South Carolina).I was giving him Kids calm but then stopped because it didn't seem to be helping with the tics anymore(maybe I was wrong) but I was also worried because i wasn't giving him a calcium supp. I get so confused with all the different options for supplements. Digestive enzymes- we are still giving them and hope they will help with dietary infractions like you mentioned with the candy- it is amazing how much junk they give out at schools, games and even CCD(religious classes)- it seems like snacks are required at every child-centered event- I never remember it being that way when we were growing up. We had one Christmas party at school and that was it. Again, thank you all for your responses. You are all such a blessing to me.

Kim, Thank you so much for taking the time to reply- I know you must be busy with your own family and I hope all is going well with your boys. A while back you told me I might be concentrating too much on eliminating certain foods and it is more important to look at the big picture and the healing of the gut. I realize now how right you were because my son is now allergic to so many foods. I am trying to stick with the 3 month elimination of reactive foods and rotation diet, but it is so hard. The environmental dr. has assured me if we stick with the diet he WILL be able to tolerate these foods in time. We have added digestive enzymes(AFP petizyde) and I am not certain if that is enough. I don't know if he needs the zyme prime as well? From what I understand the enzymes will also help with preventing other food allergies from developing. At the enzymestuff website some people have claimed they were able to go off the gfcf, soy free, egg free etc. diet with the use of enzymes and that they actually do BETTER off the diet with the enzymes because they are getting more nutrients. I am wondering if that is possible for us. The fact that your son can tolerate milk and wheat with the enzymes gives me hope. So far my son has had no bad reactions to the enzymes( about 5 days on them) It sounds like with the enzymes your son has no reaction from the milk? My son seems different from yours in that his main problems are tics, stuttering and bedwetting (only after milk) and they all SEEM related to only food allergies. He has a reaction every time he has a reactive food- it is so predictable. My main question to put out there is if his tics are directly related to food allergies which I assume means a leaky gut, what is the best approach to healing? (His dr. is older and doesn't seem to be able to answer all of my questions. I wonder if it was his chronic constipation for 2-3 years that caused the leaky gut. I think the milk caused some of the constipation but I also think it started to become a voluntary action on his part- I still to this day have to encourage him every day to go to the bathroom or he will hold it - I am hoping in time it will become a habit but for now I just make sure he goes every day. I did not do this before the tics started. I am also wondering would the bontech supplements be beneficial in our case or should I just give him the B12, Zinc and Taurine? All of the multi- vit. out there seem to have manganese, or some added ingredient he can't have. I thought about ordering the bontech and maybe just giving him 1 or 2 a day - do you think that is a good idea? Thanks for the article link to newtreatments.org. I will probably try to read it again to understand more- not as knowledgeable as you with all this stuff, but I agree - when I go back and read these articles or posts later I get more out of it or I learn something different each time. THANK YOU so much for all of your advice and don't worry about getting back to me quickly - I really do appreciate all you do for this group- I hope you and your family have a relaxing and peaceful Thanksgiving.

Faith, The rotation seemed to be working at first and yes I eliminated all of the reactive foods, had a slip up at halloween and my husband accidently fed him wheat pancakes in addition he had some candy. The neck stretch is back although it's mild - only see it occasionally throughout day. Itsme, No we haven't tried Bonnies but would like to maybe try. Laurie, Thanks for the info on digestive enzymes- would really like to look into this. Cheri, I am really confused about the whole "allergy" issue. He is not IgE to anything I don't believe- just IgG and those are all 1's and 2's -no 3's and 4's - so how important would it be to eliminate these foods completely from his diet? I am all for cooking from scratch, organic and getting rid of all junk food. It's just the limited amount of food in this diet that is bothering me- and my son is a big eater- he is always hungry. Sorry for the short response - going out of town and my husband is ready to go- will check back Sunday night. Thanks to all!

hello everyone, As I have posted before, last June my son started ticcing and we went on the Feingold diet and then went dairy free and organic. Seemed overwhelming at first, but then became a lot easier- my sons tics stopped completely for about 6 weeks. I started worrying they might come back and then of course they did! He started a neck stretching tic and we did the IgG testing and he came back with 1's to tomato, oat, bakers yeast, cantloupe, coconut, goats milk, rye and soybean and 2's to cows milk, eggs, wheat, brewers yeast, cheese and pumpkin(which he has never had) I also know he reacts to cane sugar and corn which didn't show up on the IgG but did on the p/n testing at the environmental drs. I have been doing a rotation diet from the immuno lab for about 3 weeks and feel like it is taking over my life. All I think about are meals and what can I make him for breakfast with no wheat, milk, eggs, oatmeal etc. The feingold diet is a piece of cake compared to this. Not to mention the expense - I go to Whole Foods almost everyday. My son, who is a very good eater- not picky at all came home in tears today from school because they made solar systems out of candy and he knew he couldn't eat his- he's in first grade and it seems like they are constantly giving out candy and junk - he knows he can't have it and it is really starting to get to him when they eat cupcakes etc in front of him in school. I don't talk about tics to him- just his allergies. Before he was cheerful and willing about the feingold diet but now with the extremely limited diet it is getting really difficult for both of us. On top of that I feel like I am neglecting my 3 older children with all the time I spend trying to help my youngest. Kim, I think you said you don't worry about cutting out reactive foods and just use digestive enzymes? Which kind should I use? Was your son reactive to lots of foods as well? I am wondering should I just supplement more and not worry about the special diet. Right now I am only giving him Kirkman probiotics. Was using Kids calm but it seemed to stop helping? Not sure about the best multi to use and should I try a b-complex? Caryn, since you eliminate wheat do you worry about rotating? There are lots of good rice cereals and pancake mixes but its only allowed every 4 days. From what they say if you don't rotate it you will become allergic to other foods as well. Do I really have to worry about him developing an allergy to rice? When we went to see the ped. neurologist last Aug. he said on the tic disorder spectrum he would rate him at 20% and he would outgrow it. I am starting to wonder should I just stop worrying so much that its going to get worse-(my biggest worry), have faith, feed him a healthy diet and give him good supplements - maybe even Bonnie's? I am praying for the right answer. Thank you all.

Faith, Yes I have taken out all dairy products and I also look at labels to check for caisen and whey etc.-mostly shop at Whole Foods where it is easier to read labels. When he first started the multiple tics last June the first thing I tried was the feingold diet. That eliminated the head shake. Next I tried eliminating dairy and that stopped his other tics as well as his chronic night cough, stuffiness and bedwetting. Now if I slip up and he has even a small amount of dairy ingredient in something he will wet the bed, but I don't see the tics. I am hoping one day to be able to rotate dairy products back into his diet. He was doing great until a couple of weeks ago and started a neck stretching/breathing tic. I finally had the IgG testing done last week and hope to figure out what is causing this. I have a feeling his tics are mostly related to food sensitivities. We have no history of TS in our families that we know of. He doesn't have the OCD or ADD either.I am hoping that removing the offending foods and doing a rotation diet will help build up his immune system(and probiotics) Have you or anyone tried this diet and had success with reducing food sensitivities and outgrowing the tics at a young age? I so much appreciate this site because I could not have done what I have so far without all of your help. Thanks, Mary

When my son has dairy he has tics for the 3 following days- for example if he has it on a Monday he would have tics Tues, Wed. and Thurs and would not stop until Friday. Hopefully it will be out of his system soon!