Did eliminating certain foods reduce tics?

[Claire]

Our insurace plan covered 50-70% of the IgG blood tests from www.elisaact.com--they were of course considered out of network, as was the doctor and the other tests we ran. You can call the company and get the information on the tests and call your insurance in advance re coverage. You need a relevant diagnosis--prior to submission for it to be covered. I think ours is metabolic disorder, which is correct. 277.9 I believe that all his allergies and vitamin deficiencies were part of the basis for this diagnosis. They may give you the name of the closest lab to draw blood and send it out of state (not all labs do this). Spectracell.com does this. You definitely need a doctor to sign for this, and most mainstream MD's will just run local RAST tests, which are different and only $30 for each food covered.

 

If you do the foods only test 150 foods I believe the cost is $300 before insurance. Otherwise it is $600 for all the artificial stuff also. If $ is an issue, I would do the foods only test and just cut out the artificial stuff anyway.

 

If you can't afford the test or find a doctor to sign, then you can try an elimination diet as Ronna did. Many allergists/some have the basic food list on site.

 

If he has an anxiety disorder, I would strongly recommend a pyroluria test. Pyroluria reduces the body's ability to deal with stress, which can result in higher anxieties and logically, tics. www.pyroluriatesting.com $48. Or biocenter. I would call one then the other and see what they say about needing a doctor's signature.

 

 

Claire

[susanna]

Update on my son

 

We eliminated the foods he tested as being sensitive to for 90+ days. My son was a champ in not ingesting the foods he wasn't supposed to eat, he would read labels in the grocery store, at people's houses, and even if I said it was "ok" to have something which he knew he wasn't supposed to have, he would fight me on it and wouldn't eat/drink it. I had told him we need to follow this diet until his 7th birthday, which just past a few weeks ago, and that we could then try out the foods he hadn't been eating.

 

Tics hadn't been a major issue for us lately...behavior was more of an issue. As we got into December we got a bit more lax with the diet, so he had a piece of bread here, a glass of milk there, maybe a slice of pizza, even a scrambled egg one day....we didn't go overboard and there weren't significant/noticable changes in behavior that we noticed as a result...maybe an occaisional facial tic which usually showed up after having something with artificial junk or preservatives.

 

And then came yesterday. We took our boys to breakfast where they have a breakfast buffet and an omelet and belgian waffle station. My boys had been to this place before (before the food restrictions) and were really looking forward to it. So I decided to let my son eat whatever he wanted. He had scrambled eggs, bacon, milk, a pancake and a belgian waffle with butter (he decided to forgo the syrup..he knew it wasn't real maple syrup which he nows prefers ) He ate all things he was sensitive to. Right before our eyes his behavior changed! It was such an extreme change it had to be the food. The very bad behavior continued for the rest of the day at his cousin's birthday party. He also kept craving the offending foods (mostly wheat based) It were as if he were addicted to the stuff. He also had a few facial tics to accompany this behavior, but the behavior was much more troubling than the tic. I guess his body was just overloaded by the offending items. I really don't think it was just his regular misbehaving...he misbehaves plenty...this was different.

 

Needless to say we are back on the diet today. He's already acting much better today...still an occasional facial tic or two....and back to his "normal" level of misbehavior. (he's actually a very sweet and loving boy...just a short temper at times)

 

Bottom line, the food sensitivities are a real issue for us and eliminating the offending foods make a difference. I have a feeling wheat is the big culprit for us. After having him back on the diet for a while I want to challenge him with the offending foods again...but this time one at a time to see which ones are still an issue and which ones we can add back occasionally.

[Claire]

bumped...too common an issue to be buried...

 

Claire

[Claire]

bumped. I wish I had something new to add when I bump this, but I know most newcomers only scan the first page of the forum so I want to keep it there.

 

Claire

[ntbowen]

Sorry for my delayed response...food is huge for us but we believe it makes a major impact on our lives.

 

1. CORN, gluten, and dairy.

2. Minimal TI- lots of facial grimacing, tensing (arms and whole body), jumping, echolalia.

3. Significant behavior difference with CORN eliminated. We have a "true" corn allergy shown on a scratch test. When completely eliminated (which is very hard to do), diarrhea, asthma, and "drunken" behavior we call it disappeared. His eyes would get red, pushing people, completely unable to control his behavior, woke up unconsolable from naps. If he gets corn, these things return immediately...we always know when a mistake has happened.

Gluten elimination makes the echolalia better. He acts so out of it (spacy) when he eats gluten. Dairy is hard to say except all milk has some sort of corn derivative except I believe one which we never used (we didn't know at the time). He had intense cravings for dairy and gluten...he would have eaten nothing but milk, yogurt, cheese, and bread if we let him. He is a great eater so this was not hard, but he did go through withdraw initially.

4. Immediate difference...even better within a few weeks.

5. Still tics significantly and I really believe food makes much more of a difference with him as far as behavior and mood instead of impacting tics. We'll take what we can get though...we wish it would help the tics more. We are still exploring sals and sugar which really do seem to make tics worse too. Sometimes I think he has bad reactions to sugar because his body is not use to them. Yesterday I gave him some Rice Dream ice cream after not really having sugar in a few weeks and he had bad tics.

[Claire]

Hi Natalie,

 

Thanks for such a detailed post. I updated the thread for it. I didn't know that about milk and corn. I have been letting my son have corn--I keep waiting for his retest which keeps getting delayed for reasons out of my control, bummer! I just know that certain foods we have introduced are likely still factors (still no milk or wheat/gluten though)--probably why his yeast isn't improving.

 

My son had an IgE reaction (as you say an allergy--or immediate reaction vs a sensitivity or delayed reaction shown by IgG) to wheat and peanuts. We never tested him for corn with that test--I didn't suspect it until later.

 

I have forgotten, did you do the IgG tests also? Given his strong reaction to sugar, I do think yeast is a likely candidate. Yeast can react immediately to a nice dose of sugar.

 

We are going to try to do another culture for yeast, to see which anti-fungal is the best. However, it is really hard to get a culture, even the lab told me that directly.

 

Claire

 

ps If Andy and Ausclare ever provide their details, that would be great...

[Claire]

bumped for newcomers. Intro post updated for recent additions to 'survey'. We are up to 17 of 19.

 

I also added an update on my son's sensitivities, which dropped like a rock in this past year. No more wheat/milk/peanut/corn/egg/almond/banana/milk delayed reaction, per his recent retest. The system of removal seemed to work, likely helped by mercury elimination. He still has yeast, so I was surprised to see such improvement. Am reluctant to reintroduce milk on a regular basis, and will hold off on wheat/peanuts until we also redo IgE testing.

 

Claire

[marina]

Hi all

Just an update from us.

In the last few months we have been restricting amine type food (those on Bonnies list), having no preservaties or additives, and limiting milk to one glass per day. This in additition to not screens have eliminated tics by 95% and totally eliminated the obvious neck jerk tics.

MY view was that the screen elimination was the key.

However, for the last 2 weeks we gradually introduced all screens and notice only some eye tics if he watches in a dark room. He still hasn't played any games (That trial is scheduled in a weeks time).

This is contrary to what I expected.

 

This last week we have introduced more foods such as tomato and YES unlimited chocolate easter eggs, and tics have not reappeared as yet. Hope it stays that way. Milk is still being restricted as are all preservatives etc.

 

Don't know what's going on.

I'm posting this only to share information, not because I feel that screens or foods are are not triggers. I do. When tics were at their worst, the screen elimination was the most helpful thing we did (thanks to Claire). The improvement was obvious.

 

Could it be that tension is the most significant trigger, and that those issues have been resolved??

Puzzled.

 

Marina

[Claire]

Marina,

 

Or maybe his nervous system just needed the screen removal to settle itself--remember how in the beginning, new screen exposure set him off again? Well, time has passed now. Or maybe (did I post this too you?) he has more immune assaults (antigens)during your spring and summer, and now that it is your fall, he has less to react to, so his 'bucket' isn't so full and his tolerance is higher.

 

In any case, this is probably the best problem you could have, right? I am really happy for you! Especially for your son at his age and with his interest. Are you doing the same number of hours as before? Tolerating some CRT exposure (and more than a couple of months ago) is different from tolerating several hours in a day as he may have done in the summer. Presumably, he still has school and homework etc.

 

I would propose this: The screen removal allowed his system to settle, and thus the tension was way down. His brain didn't have that constant irritant/stimulation and retrained itself to function without that stress/tension. He is happier, life is good. Thus with the reintroduction, his 'baseline' is very healthy again, so he can tolerate more. I think of how a healthy person might stay up all night and do fine if they have been getting plenty of rest, but when they aren't rested, that same all nighter can be exhausting.

 

Example: My son had sensitivities to a ton foods. They said--go 3 months without them and reintroduce and he will be fine. (Okay we went 5). Well they were correct. He no longer tests sensitive to them and seems to have them with no issue. (And he still had lots of yeast in his gut, so it isn't that his gut healed. Though it could have been the reduction in mercury...) So I wonder if this applies to screens too, sometimes--why not? The body gets a break and then it can handle it again. I also think of pushing on a bruise--it hurts and will keep hurting! Let the bruise heal and you can touch the same area with no pain.

 

Or maybe just the well-lit room is enough that the CRT screens isn't a trigger for your son. Maybe he is less sensitive than some--it is all a spectrum of course.

 

Of course, this is speculation--it is too early to tell. But I sure hope you keep posting so that we can all learn from this. For efgh, her son got less sensitive over time with no screen exposure. For Jean, her son got more photosensitive over time, even with no screen exposure. So I am back to my party line, which is that: Every child is different, every path to their best neurological health is different. This is why so many doctors think tic syndromes aren't treatable. But the reality is, if the parents keep trying, you have a good shot at finding the right path for your own child.

 

Another theory is that the continuing absence of milk and preservatives means that his system is less taxed and is healing, and he can thus tolerate more.

 

I guess my best input is to just keep your log as you move forward. If his tics return (hopefully they won't) try the no screens again. I would just watch for the 'bucket' (accumulation) thing and the insidious slow rebuilding, e.g. the screen sensitivity returns because of either a cumulative effect, or because other things in combination means his system is being overtaxed and simply becomes more sensitive again.

 

Your journey is still continuing. You still need to reintroduce games, to go a few months with screens, and experiment with foods, to see what his tolerance is like next (Australian) spring/summer. I think the only 'danger' is discounting (forgetting?) that screens was ever a factor--just in case you are in a situation where you are playing detective again this is important to have in your arsenal.

 

Really, congratulations though, this is excellent news, Marina, I am very happy for you! What a nice Easter present! Having less screen restriction is a major advantage in our techy world today--especially middle school on. I count my blessings that we too now have more tolerance for screens now. But there is no doubt in my mind that removal of screens in our house for a time both was an important part of his healing, and certainly got us to no tics faster than any other path. (This is not true for everyone, again, it is very individual!)

 

Claire

[marina]

Wow Claire

What a wonderful writer you are. I think you exactley encapsulated all my thoughts and conversations in my head, so clearly. Yes I agree with you. I think the bucket finally went down to a manageable level so that symptoms aren't obvious.

I have slowed myself down, and testing things one by one, but I don't think it quite works that way at all. It's more likely the combination of things.

 

That being said, eye blinking has slightly increased tonight, and Stef our eldest is displaying his silly behaviour after a weekend which included quite a few food transgressions. With him it is always a delayed reaction of a day or so, with symptoms diminishing after another day.

 

Stef is keen to get back to our normal way of eating especially seeing that he has an exam coming up. Matt just enjoyed all the chocolate!

 

Claire I will never forget, that screens are part of his major triggers when his neurological system isn't functioning right.

That is why I posted.

The improvement just wasn't a waxing waning type effect. It was so obvious that the improvement came because of screen removal. Yet here we are with him being now being able to tolerate CRT screens AT THE MOMENT.

It is important for us parents to know that there are key things we can do to help our children.

 

You comment about seasonal allergies is something I will keep in mind. Stef last week had IgE testing for grasses and pollens which will give me a clue.

 

I really don't feel we are out of the woods with Matt. Merely on a journey of discovery which seems to have many unexpected twists and turns.

But hey, isn't it great to have been able to say to the specialist, that we have definite answers to what helped. Really I felt that I was the driver and that maybe she could learn a little bit to help others.

 

Claire it's so nice to have you back.

 

Marina

[Andy]

Claire I am so happy to have read about your son's improvement for intaking of foods. Not only am I happy for you but it also gives me hope that the same could happen to my son. Funny that you mentioned that you felt the detoxing of the mercury helped for when I inquired about another annual food allergy test for my child the doctor said that the detoxing will take care of that in time.

[Claire]

Bumped for Karen--please read the first post...

 

Claire

[KJS]

We've started the Feingold diet and today is day 7. All of the food in our pantry and fridge right now is on the Stage One list so there's no chance of grabbing something that's not on the plan. Out of the house is harder but we're trying to impress upon our daughter that it's important to only eat the food I send for her. It's hard to say whether there's been any difference in the tics. She reported eating a bit of someone's orange on the school bus home on Friday & before I knew that I did think I noticed her eyes darting about more than usual. So perhaps there is a sensitivity. Oranges are not in Stage One so they might be something I try to re-introduce at a later time as a test. How long has it taken others to see a change when trying Feingold or something like it?

 

Karen

[Guest Jeff]

Hi KJS, I hope the Feingold program works for your daughter. It has worked for me and my two daughters for many years, in keeping our tics to a minimum. We noticed a big change in 2-3 weeks. For others it's faster; for others it can take up to 6 weeks, but then the change is dramatic. Indeed for many, the symtoms actually worsen during the first few weeks - sort of a "detox" period. Hang in there for several weeks to really give it a chance.

Have you tried the Members Bulletin Board yet? The folks there are a wealth of info. Most who try Feingold are doing it for behavioral problems, but some of us have found it to be effective at reducing (nearly eliminating) tics.

The program can be overwhelming at first, but once you get the hang of it, it's not so bad. We started out really strict, but have loosened the reins a little over the years. We find that if we keep a "clean" diet in the house, we can get away with some off-diet foods once in a while. And if we do see a reaction, they're usually mild, and we at least know that we can stay clean for a while and get back on track.

Good luck. Jeff

[Guest Guest]

Thanks for your reply, Jeff. I see that you're not 'registered' and I wonder if you'd consider doing that so I can pick your brains in PMs (private messages) or via e-mail.

 

From your comments it sounds like we should give it at least a month (unless we see changes sooner) before moving on to something else.

 

I've started a new thread to track this so perhaps we can continue posting there. It's called 'Eliminating Foods in NJ' (more or less).

 

Karen