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I started this other thread http://www.latitudes.org/forums/index.php?showtopic=3485 so some of you are familiar with my son's story but I am just so confused.

 

Starting about a month ago my son has fluctuated between periods of calm that will last 3 or 4 days to episodes of extreme uncontrollable hyperactivity complete with vocal and various body tics. The first episode was the worst but he has had several since then that are almost as bad and many that are not as severe. I pulled all preservatives,dyes, additives and suagar. The worst of the episodes were always triggered by a diet oops and would take anywhere from 8 to 3 days from him to get back to good days. The episodes last several hours. He has been fine the past 4 days with only minor whistling and normal hyperactivity. We ordered the feingold diet and the starter letter said sugar was ok so we added a small amount of sugar back yesterday and that was a bad idea. He started to ramp up again last night, but a natural calm drink & ES's bath stopped it affectively. He was still jittery this am, but okay & then 2 pm today he says "mom, it's starting again" and boy was he right. He jumped for an hour on the tramp and still could not even stand still, let alone sit. This time he started flinching like he was being dive bombed by a bird and looking around like someone was sneaking up on him. He said he just had a feeling. Spooky. All the time pacing around. We were out of ES's, but gave him the drink. He can be still if he reads & will almost desperately find a book to help control it. Could just a little bit of sugar do all this? How does sugar affect phenols & sulfates? What am I missing???? He was supposed to go to the MD today, but our car was in the shop.

 

When he has these episodes he's hot, flushed, craves baking soda, sometimes tic's, sometimes not, they are never exactly the same. Afterwards he is exhausted. The following are the rest of the observations I have made from the other post.

 

He stuttered for 8 years. Wet the bed until last year.

Allergies/asthma

Always hot blooded

ADD

Many annoying habits that we wrote off as just being annoying. Like making noises & not realizing he's doing it.

Started these episodes about three weeks ago.

The more he tries to stop the worse it gets.

They always start right before a meal. Seems to be connected to glucose regulation. If he has a good snack between meals he's usually okay.

A good meal will stop it.

He can tell when they are going to start.

He describes 3 different types of episodes.

Unable to write very well during episodes.

Doesn't remember much of what happens during the worst of times.

Forgets how to do some tasks during these times.

Says he can taste baking soda prior to an episode & craves it terribly during an episode. He will eat it by the spoonful during, but does not want it when he is feeling fine.

Strong Epsom salts baths will almost always stop it.

He can stop when he is reading.

Triggers seem to be additves or preservatives. Dyes etc.

He had been doing good for 3 days & one hot dog sent him into an episode with in 3 hours which set him back for three days.

Unable to stop whistling.

He has periods of calm and is just fine.

During the episodes he has facial contortion tics & hand tics and he has always repeated what other people say.

 

 

He's on Omega 3,6,9 , lecithin, magnesium, chromium, claritin, nasocort and I think that's it. We are starting the feingold diet as soon as it gets here as I already know that dyes are a big trigger. I am just at a loss. What am I missing here. He can do for days and just be calm as can be. One slip in the diet & he's in the throws of it again. He is sooo upset by this and it so hard to watch. We are keeping a details food diary & video taping too. What else can we do? Help..... I don't know if this is TS, but I know I need to help my son.

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I am so sorry that this is happening right now.

 

Two thoughts.

 

1) I have read that the researchers/practitioners who are doing Habit Reversal Therapy are having a lot of success in eliminating tics by teaching the kids to recognize the premonitory urge and then substituting an opposing muscle action. From what I have read, they can eliminate tics without substituting new ones. There are a couple of research groups who are investigating it. One is in the Los Angeles area and were pretty recently accepting new patients who were 9 years and older (as that's the age when they think that they can teach the kids to recognize the urge). I think there are a couple of other groups throughout the US and there may also be individual practitioners of this therapy as well.

 

2) I remember that you said that reading calms him. My son has trouble with binocular vision, due to an unrelated problem (a genetic condition that he inherited from me). His tics increase a lot when he reads with both eyes and do not increase very much when he reads with only one eye. We have seen a vision therapist who has said that he has trouble with converging his eyes and that vision therapy has helped other patients of his who have tics that are brought on by tasks which require convergence. I know that you have a lot of other issues going on, but since reading always calms him, perhaps looking to see if he does something unusual with his eyes when reading (closing one, for instance, which is what *I* do when I read), or using bright or dim light, etc, may bring other clues. You might want to take him for a visual therapy exam to see if there are any visual issues which are contributing, as well as the diet issues that you have already identified.

 

I hope that helps and that things get easier for you very soon.

 

-- Liane

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Thanks Liane, Good points....

 

My husband just called. They are on the way home from something they went to. Nathan wouldn't get out of the car b/c it was so bad and he's sitting there biting his lip in a superhuman effort to be still & control it. :(

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gfam,

i wish I could give you something useful, but really I think you definitely need to have a full medical and neurological evaluation to see where he stands, and then go from there. I know you want to figure things out, and I know you have alot of info under your belt, but you asked what you might be missing, and I really think you may not be able to figure this out alone, you need a doctor of some kind for this.

 

As far as the sugar, if you are sure the reaction was after that, well obviously you'll keep it away as much as you can, even if Feingold says its okay, it really may just not be for your son. Have you or could you do some allergy testing both Ige and Igg? I think that may give you a good direction, since it seems that allergic reactions might be what is happening. But again, please do have him examined, for you never know, at least to outrule anything, try to have some bloodwork done. In the meantime, do the best you can with the diet and sugar elimination.

 

BTW, I forget, but I think you homeschool, but if not, have these episodes happened in places other than home?

 

Faith

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Hello there,

 

I am so sorry to hear what you and your son are going through. I know how frustrating it is when you are trying to figure out a pattern of what is going on. I know for me it truly consumed my thinking for quite some time. But after praying and reading extensively I found my son's triggers MSG, Yellow Dye 5 and 6, Caramel Color, Red Dye 40, and High Fructose Corn Syrup.

 

What I am wondering is have you taken out MSG out of his diet? The problem is it is in MANY common everyday products we eat. Including canned soups, flavored potato chips, soy sauces, gravy mixes, lots of fast food products, etc. This by far is my son's worst trigger. I noticed you said he had an episode after eating a hot dog. Do you by any chance know the ingredients in this hot dog? There are hot dogs that do contain MSG. Sometimes in hot dogs I have seen it listed as "hydrolyzed protein". Anything hydrolyzed is an MSG property. Here is a post I put together with all the hidden names of MSG and what to look for http://www.latitudes.org/forums/index.php?...aded&start= .

 

I can tell you with the reading I have done on MSG I think millions of people in the world are greatly being effected by MSG and have no clue that it is the root issue of their health problem. For example, MSG has been found to be the root cause for many people with migraines and also for people with fibromyalgia. I have read numerous cases of people who once they learn all the hidden names for MSG and avoid it like the plague low and behold their migraines or fibromyalgia goes away.

 

You also want to avoid all Aspartame products because they have the exact same effect as MSG.

 

God bless and have a great Friday,

 

Carolyn

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Hi gfam

I also agree that it would be most beneficial to have an evaluation by hopefully a doctor who has latitudional thinking.

just a few points to note....carolyn_lsc found she has coconut allergy ....you mention coconut in the unda so do be sure he isnt sensitive to it. most people benefit tremendously from coconut but for others it can be a problem. as you have already found, diet plays an enormous role in our kids wellbeing!



hoping you find answers to help you child

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Chemar --

 

Thanks for the info re: the Habit Reversal Therapy. I had read about it a couple of places and talked briefly to the researchers on the phone to see if they were accepting new participants.

 

As of a few months ago, they were still accepting kids for the study, so I don't think they have published their findings yet.

 

However, I had heard that that they were funded by a grant from the TSA, so I assumed that it was an appropriate modality for both transient/chronic tics and for tourettes.

 

Do you have any literature, etc. that you could point me towards so I can learn more? Because I was thinking that might be a direction we would investigate when my son was old enough.

 

Thanks!

 

-- Liane

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Hi Carolyn,

 

Your threads have been so helpful. You have amazed me with all you have put together. Nathan is not eating anything I have not made myself from scratch. Except the hot dog. So I know he is not getting any of those things. Last night by the time he got home his lip was bloody from biting it in an effort to sit still. :( They had stopped & bought more epsom salts so we immediately put him in the bath & like ususal, that immediately calmed him. Could just a small amt of sugar have triggered all this?

 

Coconut does not seem to be a trigger. He will swallow it by the spoon ful with no problems.

 

It just drives me nuts when I can't understand the why.

 

Thanks for you help.

 

Donna

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Hi Liane

 

it's possible that the group you are referring to is doing a different form of therapy than that which we looked into in 2000...if so I sure would appreciate if you can find more info on it. Therapies thankfully metamorph and so if this is not the suppressive techniques being used back then, that is excellent. The principle then, as I understood it, was to re-channel by suppression and substitution. Those with TS that we encountered who had tried this said they found elevations in tics with the focus so strongly on them, and that the suppression caused later increased anxiety and OCD etc. Dr Dunc I think once did a seminar series on suppression of tics and elevation of the co-morbid disorders - his website is Life's a Twitch

 

 

 

but again, if this is a new form of therapy showing promise, that is great

 

my son found cognitive behavioral therapy for OCD very helpful, and during those sessions he and his therapist would certainly discuss substituion techniques for some of the more intrusive tics he was having then, amongst them coprolalia.

But there was *never* a requirement for tic suppression, rather an emphasis on substituion that allowed the tic to manifest freely but in a way that wasnt injurious or socially embarassing. eg he learnt substitute words for bad ones and how to say them under his breath instead of blurt them out.

 

 

 

 

 

Chemar --

 

Thanks for the info re: the Habit Reversal Therapy. I had read about it a couple of places and talked briefly to the researchers on the phone to see if they were accepting new participants.

 

As of a few months ago, they were still accepting kids for the study, so I don't think they have published their findings yet.

 

However, I had heard that that they were funded by a grant from the TSA, so I assumed that it was an appropriate modality for both transient/chronic tics and for tourettes.

 

Do you have any literature, etc. that you could point me towards so I can learn more? Because I was thinking that might be a direction we would investigate when my son was old enough.

 

Thanks!

 

-- Liane

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Cheri,

While you brought this up (behavioral therapy), could you tell me a little more how you go about this and where to begin looking. I think I may have to explore this avenue as a way to help my son learn and find ways to cope with the tics and ocd which seem to be having an effect on him in the way of slowing down his work progress, everything is a drawn out affair and he is so distracted. I'm kind of at my wits end here, he is coming home everyday with work he did not finish in school. When I grill him about why he couldn't do it in school, he basically doesn't know. But I see when he is doing homework (or actually "not" doing it :( ) he doesn't stay on the task, he gets up for a cookie, for water, fools around, plays with eraser, looks for me if I go out to throw something in the trash, obsesses about wanting a piece of gum, etc. etc. etc. I hate to say this, and I get a bad rap for this from my husband, but the only thing that gets him back in that chair to work is if I "freak out and start yelling enough to look like I'm about to wack him!" :) .

 

Sorry to hijack the thread, but since it was mentioned, thought I'd ask. Any suggestions on what type of help I could get him and how it helps? How did cbt help your son, specifically? Is this covered by insurance?

 

Thank you

Faith

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