Tried a million things- help!

[ntbowen]

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

[Heather]

Hi Natalie,

 

Welcome to the forum. Don't worry about the length of your post. You are right...the more details the better in trying to help. I wish I had quick answers for you. It sounds like you are doing all of the right things. With the antibiotic use for long periods I would guess that he probably has a yeast problem so that testing would be beneficial. If he does have a yeast problem then his digestive system could be very disturbed and he may not be getting all of the benefits from Bonnie's pills.

 

My naturopath's protocol was to first clear out yeast from the digestive system. She did not even prescribe a multi-vitamin until we did an antifungal because she said he would not be digesting or absorbing much. With that said, I feel the multivitamin is a good place to start as over time, the nutrients will eventually take effect. It will just take longer. Once we had my son's yeast cleared, he was put on cal/mag/zinc and B6 and the tics went away pretty quickly.

 

I am not much help on your other questions....sorry. I am sure there will be others with answers for you.

 

Good luck and you are definitely on the right track to healing.

 

Heather

[ntbowen]

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

[ropeterson]

Hi.

When my wife says that her family thinks she is crazy, she is not including me.

As you can see, Natalie is a caring and loving woman that is searching to the ends of the earth to help our son.

I love her for that.

 

As for me, it seems I am the genetic carrier of our Tourette's. I had no idea that I had ticks until we started looking into our son. My "ticks" are something I only do in private, probably because I was made fun of as a child and they were not understood. I don't tick when in public, or when I am busy, only when I have time to "think".

 

Anyone else out there like that? I can go all day without doing any ticks if I am very busy, occupied, active, or around people.

 

Thank you all for the information and support to both of us.

 

Chuck

[Heather]

That is great that you are so supportive to her. Believe me, this stuff really does work as you will see from reading the posts.

 

My husband was not so supportive when I started and it was a struggle to get him to believe in the natural way of healing. Now he is my biggest supporter as he has seen the results. Like Natalie, I would stop at nothing to help my son and with perserverence you will find the answers. It has been a year now since we have been treating naturally.

 

For yeast, we used Threelac which is ordered through a direct marketing company. There are no corn derivatives...at least not that I know of. The makers of this product makes astounding claims as far as yeast goes, although I don't know anyone else personally who has used this product and been tested for yeast. It did work wonders for us as far as symptoms go but we didn't have formal testing done. Another product my naturopath prescribed for yeast was called Candicin by Genestra. She said she has had enormous success with this product for killing yeast. There are many other yeast killers on the market. We used a probiotic along with the Threelac to promote healthy bacteria growth.

 

The tests you are having done on December 1st sound like they are what you need.

 

Let us know if you have any more specific questions. Otherwise I encourage you to read back posts to learn all that you can.

 

Heather

[Chemar]

Hi Natalie and Chuck

 

I only have a few minutes to post right now, and so will try to pop back later to answer some specifics for you Natalie, but just wanted to let Chuck kn ow that my husband (57yo) didnt realise that the "stuff" he has had (and also hidden for the same reasons as you) were TS tics.

It was only when we were going thru our son's diagnosis 5 years ago that my husband suddenly went "aha!!!....NOW I understand what I have!"

 

Just to encourage you both again too........my son was severely impacted by his tics and OCD etc initially but is now living a very happy and full life and med free, mild tics and doing wonderfully academically and socially.

We noticed his earliest tics (in retrospect) when he was an infant.......he made clucking noises and when just a few months old would roll his eyes a lot.

Doctors said it would all pass but as he got older he would always tap things or swing his legs etc. Wasnt till he was 10yo that we got a diagnosis of TS, when the tics manifested rather severely.

He is now 15 and has been on the supplements for 4 years and WHAT a difference!

 

ok gotta run....will try to check back later

bye now

[Claire]

ntbowen and ropeterson,

 

I assume that since your child is 3, that he doesn't do computer? e.g. that eliminating TV for the week meant eliminating screens totally? If so, please confirm, as I want to note this on the TV summary thread that it had NO impact on tics. (others have commented on behavior differences, but that is separate.

 

 

I am glad you are getting the IgG test for milk/wheat, not just IgE.

 

I think Heather is right on target with the yeast comments. Good that you have at least found some things to help. Watch for molds in the house too.

 

We have corn issues, and my understanding is that cellulose is okay, so we do it, but I am not sure. You are right, waaaaay too much is derived from corn or contains it (sorbitol, sucralose, baking soda...).

 

Nystatin contains CORN??? My DAN doctor didn't mention this!!! arggh. I can't believe it. Now I must check that out. We've been doing it for 2 months now. Unbelievable. We have been so careful to rotate the corn after eliminating it for 5 months.

 

zinc helps fight fungus. Capryllic acid is good for yeast. Start low with the capryllic.--and diet must be changed (look for candiadias and see the retrictions). I am trying Heather's Threelac myself (6 weeks so far)--less diet change I retest next week.

 

If your child was born in 2001, you should check to see if thimerosal/mercury was in their vaccines. Maybe he got lucky in that way.

 

Claire

[ntbowen]

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

[ropeterson]

Thanks to everyone for the replies.

 

Claire, it sounds like you are running the in the same crazy corn/supplements/anything-else-you-can-think-of circles that we are.

 

We need to get a double-blind study on supplements in TS. Get this information into accepted medical journals and let EVERYONE with tics know about it.

[Claire]

Natalie and Chuck,

 

You think corn is bad (and yes I know about xantham gum being fermented in corn--I found out a couple of months ago). And we won't even discuss the details of corn syrup in everything.

 

I will ask our compounding pharmacy today about Nystatin, and let you know.

 

You think no corn is bad...I hope you never have to do no corn/milk/wheat/eggs. Now that rules out virtually any prepared food except at a specialty store.

 

I wish I too knew what to eliminate during breastfeeding. My friends didn't know what to think of me initially, but now they are believers. My husband in particular. Because I had him do the Spectracell vitamin deficiency test and added a couple of other things. He is feeling the best ever he says (he doesn't get tics, I am speaking of energy).

 

Sugar and elevated yeast don't mix. If you are looking for a non-sugar sweetener, try Xylitol and Stevia --they are the only non-sugar sweeteners without corn. And I read they are talking about making xylitol from corn in the future--to save money. We do the gum to avoid cavities--but our child is older. you can get Stevia at most health stores, and xylitol is at www.smartsweet.com. The xylitol brand at Whole foods is terrible for some reason. Before he could swallow, we did the pills in smoothies, but we never stopped berries--they just never bothered him.

 

First we did the IgG test. Then we eliminated the sensitive foods for 4-5 months, and simultaneously tried to treat the yeast--were NOT successful with the yeast, it got worse, likely due to the simultaneous mercury treatment. Then we rotated in one food one day in one week, and watched for reactions. THen a second until we were past the ones he even wanted to eat (20 sensitivities). Reaction occured to wheat only, so it is out again. Don't even bother trying peanuts and milk. He now has the others rotated no more often than every 4 days.

 

e.g. the rotation is not to increase tolerance. The rotation occurs only if they are no longer sensitive, and you don't want to create a new sensitivity again. It takes 3 full days to get out of the digestive system, thus the 4 days.

 

If he is still reacting to corn, then this wouldn't work. Likely you need to heal the yeast.

 

Everyone in our family has a strong reaction to dustmites. We have really rectified this issue greatly. No carpets (except 3 tight wool area rugs) only one set of cloth curtains in the whole house, and only leather furniture. I used to put a sheet over the cloth couch when he was on it. Upholstered couches are the worst dustmite sources! What are your son's reaction to dustmites and corn? Tics, or respiratory...?

 

I do recommend the pyroluria test because it is cheap, and it will affect the supplement routine--and it is not invasive. No doc signature either if the doctors balks at it. It is aggravated by other issues. eg. when yeast went up, it went up.

 

The salicylate elimination difference apparently can take weeks for some. We didn't do it, so this is second hand info from Ausclare and Jeff.

 

I somehow hadn't noticed that you had already restricted TV to only one hour a week. That would be too little to notice a difference, since you were virtually doing no screens each week anyway. When you cut out the morning show--that is when you would have noticed a drop in tics. Did you notice then? Or were you paying attention? I know you noticed the grumpiness change, which to me could easily be a neurological irritation, though obviously not a tic.

 

I am still 'betting' that there are other food sensitivities and yeast. I would definitely call the pediatrician re the shots. Since they stopped using mercury in 2001, and Chiron had already voluntarily taken it out, then as I said, you may be lucky in that regard. Also, there is something called "serial endpoint dilution titration" to help reduce food sensitivities. We may try this at some point. Others try energy methods. My personal view: Best to do elimination of all sensitive foods first, to find the baseline. How else can you know if the desensitization is working? I think most here did do elimination then experimented.

 

Was your child on a lot of antiobiotics (3 times in one year)? Or steroids/inhalers? That can cause yeast. Otherwise maybe the food allergy/sensitivity just runs in the family. Did he do the spit test. First thing in the morning (before eating or drinking) spit into a glass of water and see if the spit floats (good) or sinks (bad) or has stringers (bad). Doesn't replace a formal test.

 

I think I mentioned mold before--think about this one, it can definitely affect moods.

 

And yes we do carnitine for general health. I know Chemar has recommended it for tics too.

 

ps This is really cool. I don't think we have ever had both the husband and wife posting. It certainly shows parental support. Lucky kid--I bet you will get past it. Certainly Chuck's mild tic syndrome shows a genetic tendency to tic syndromes of whatever kind. Chuck, I think you have an opportunity to experiment with things for yourself to see if they have impact. I know that your tics are too minor and non-noticeable.

 

I personally had disturbed sleep which was likely neurological issue. I took almost all the tests my son did and found I had identical health issues! So the genetics can be toward underlying health conditions, however they manifest themselves. I took it as a gift and have been correcting them. Especially my low antioxidants/high metals. High metals can be related to Alzheimers. Low antioxidants can relate to high metals (no body detox) and to cancer. So I figured our son's issues indirectly saved me from health issues later--thus the gift.

 

Claire

[Guest Guest]

Thanks Claire for all your help. As far as TV goes. I was letting our son watch an hour per day of TV for about a month before I did the elmination for a week (after reading post here). We didn't notice a decrease in tics just the usual grumpiness. After that though, I decided that we would just do Superman Fridays for one hour(he adores Superman so I compromised).

 

I am looking forward to getting the IgG test because I know we have other sensitivities. We know for sure about the corn, dust mites, and cockroaches, but we also elminated milk and wheat. We know milk helps, but we are still unsure about wheat. Dust mites are definitely a problem for us. We had all the beds, pillows covered. Unfortunately we do have carpet, but it was just put in last year and we vacuum constantly. That's funny what you said about upolstered couches though. A few times my son has fallen asleep on the couch and woken up uncosolable, and we decided last time it had to be the dust mites on the couch. We probably need to get leather too! We used to have him on pulmicort and then flovent for prevention of reactive airway symtoms. We stopped them this summer after elminating the histamine allergies, and are hoping things get better. So far we have only treated him with albuterol once. We'll see as the winter progresses.

 

I really want to treat him for yeast. Have you ever heard of a product called "Yeast Aid?" Kirkman makes it, and it contains Capryllic Acid, Goldenseal, Vit. C, Selenium, Oregano, Olive Leaf Extract, Biotin, Cranberry Extract, and Pau d'Arco Extract. It's corn-free and I thought I might try it. I like Kirkman products. How long should I treat with Caprylic Acid to clear the yeast?? What brand Caprylic Acid do you use? Cameron was heavily dosed with antibiotics when he was born and was on many antibiotics for the first two years of his life for ear infections. If we would have only known about the alllergies. My daughter now is getting one ear infection after the other. I am so nervous treating her now with all these antibiotics.

 

One more issue I could use an ear on...Bonnie's Vitamins. We are now on our sixth or seventh day. We are only up to six per day (total allowed for his weight is 10). The only two other things he gets are flax oil and a daily probiotic (could either of these cause more tics). I started these things at the same time. I have noticed an increase in vocal tics, a mild sniffing tic (never really had before) and behavior is deteriorating. Important consideration: Before this as I mentioned in my first post we used to be on Super Nu Thera which had a much higher B6 dose. In fact I took him off because I think it was too high. I would notice four hours after taking the vitamin, his motor tics were more jerky and severe which obviously concerned me. I have not noticed these jerky movements since he has been off them. The vitamin B6 in the SNT has normal B6 in it and P5P. The total B6 he gets in that vitamin is 175 mg (this is a minimum value because everyone supposedly absorbs P5P differently but he was at least getting this much). When he took this his behavior was much better, less aggression, better transitions, more content...that was until it wore off (motor tic increase). My theory is that maybe he is not getting enough B6 in Bonnie's, but was getting too much in the SNT. Do you have any theories? Has anyone else noticed an increase in tics at first with Bonnie's? I wonder if he is reacting to something in the vitamin. I have some extra B6 that I could add but it's not P5P. I also ordered Cod Liver Oil (he can't do capsules) from Nordic Naturals so I will switch him to this soon instead of Flax seed oil. Thanks for listening...how are your son's tics now after all your treatment?

[Claire]

B6 feeds yeast! I have read this and had it confirmed by both my DAN doctor and Pfeiffer. P5P is better for this. Since we are treating for pyroluria, I am managing this constantly. Pfeiffer says they tried switching to just P5P but found some combo worked best for most people.

 

As for your daughter, I have read that some doctor's treat ear infections by giving nystatin! They think the yeast builds a viscious cycle. Check it out on google. I am sure that you have read that foods can cause infections, eg milk. May be good for her to get a food IgG test too.

 

With all those antibiotics, yeast is even more likely.

 

That Kirkmann brand sounds great. We didn't do well on Capr acid, made us nauseous. So start low for a few days and build up and cut back if nausea occurs. Some say it is die-off, but I can't say for sure--it was real for us. We tested and retested it.

 

Remember zinc too, for the yeast. Yeast is TOUGH. Some enzyme (celllulase?) supposedly eats through the outer coat of the yeast and makes it easier to kill. Gotta replace it with the probiotics, as you are doing.

 

Claire

[Guest Jeff]

ntbowen and ropeterson, You mentioned that you were getting ready to try fish oil for your son. I only want to mention that some people - myself included - react to the fish oil. I started to take it, but noticed an increase in my tics. Other people have noticed the same thing.

Some of the folks on this board recommend the flax and primrose oil. I can't speak to that, but I do know that the fish oil affects some people.

Glad you found this board. You'll surely find some answers here.

Jeff

[Guest Guest_ntbowen]

Chemar, do you have any suggestions on the supplements since your son does so well on his? I really feel the P5P must have been doing something in the other vitamin he was taking to have such an effect on his behavior. Bonnie's is not helping at all. In fact his behavior is terrible and tics are very bad. It's hard to know if his behavior is worse BECAUSE of Bonnie's vitamin or because he is no longer getting the other one (I pretty much stopped the first the SNT and started Bonnie's a few days later- bad I know but that's what I did) I just added a digestive enzyme because maybe he is not absorbing anything, and in the other vitamin maybe he actually absorbed P5P. However I think the dose of P5P was too much because four hours later he would get these intense jerky tics which I have not seen since we took him off this other vitamin, but his disposition was so much better!!!! I thought about adding a low dose of P5P to Bonnie's TS Plus Control, but I haven't found someone who sells a small dose. If you read my above post, there are more details. We are really trying to figure this out? We are also doing a probiotic because yeast seems to be a factor. I am giving him two a day. Let me know if you have any suggestions...thanks!

Natalie

[Guest Guest_ntbowen]

Claire, since we are on Bonnie's I think my son already gets 10 mg of Zinc. He's 38 lbs should we increase it to 25mg like others have done. We are trying two probiotics per day for two weeks so see if it helps the yeast for now. His behavior is just awful. As I said in my previous email, I'm not sure if it's that he is no longer getting his old vitamin (it had P5P and much higher doses of B6) or that he is reacting bad to Bonnie's. I added a digestive enzyme today...a lot of people have recommended this to me thinking he really doesn't absorb the vitamins he has taken and maybe in the last vitamin he could actually get more B6 from the P5P. It's so confusing. Do you know a hypoallergenic brand of P5P in a small dose? I think that would be a good experiment in addition to Bonnie's. Thanks for listening.