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positive update on ds


mommyfor4

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I just wanted to tell you what my experience has been with vocal tics. My brother has TS and for quite some time it was off and on and mild to severe, Well anyway a couple of years ago I started giving my mother some lists of minerals and vitamins, the reason my interest was peaked was because my son has some issues, nothing that could easily be diagnosed, but im his mother and I know somthing isn't right, the Dr's did tests and the dr's answer to me was maybe its just how he is, my husband tells me he just doesn't try hard enough. He has attention problems and he is outright lathargic, very low energy, which is probably why he can't focus, he has always taken a little longer to be able to accomplish his goals, bed wetting, riding his bike, playing video games, and he is very spacy. I am still searching for an answer to some of these issues the spaciness and energy level is my hardest symptom relieve.

 

Anyway I began my quest to fix my own child and in the process helped my mother. This is what I found, when we fixed one issue another would arise, for instance, my brother was on trace minerals and vitamins, his vocal tics went away, over time he had to have b-complex vitamins added to keep the tics away, well eventualy he developed OCD, he had irrational fears and fobias, so we started him on stress releif herbs, and fatty acids, I was attempting to regulate his sleep cycle and really feed his brain the right amout of fatty acids to function correctly. Well all of his symptoms have gone away, but if my mother changes up his doses he starts to become extremely obstinant, he will disagree with anything you say and he starts to just cause havoc, for no reason. I am just dreading what will arise next, but it seems like when ever we think we get a handle on his symptoms change. My son doesn't nearly have as many issues Thank god, but all the same like your child he will be so hard on himself and cry that he isn't good, I think its a form of depression. Anyway I am new to this forum so if anyone has a sugestion please i'm always open to try new things.. Oh also we are currently doing the Brain Ballance program on both of them, so to be honest its so hard to tell whats helping, or is it a combination of everything. Good luck

 

liz

 

Thanks Liz and welcome! Have you tried a good multi and the Natural Calm Magnesium, epsom baths have been really beneficial as well. We have also had good results with elimination diet and avoiding all artificials and chemicals in food and environment. With our son his self deprecating has passed but he does have anxiety type issues that rise when he is waxing so they obviously are linked. I wish you the best and look forward to getting to know you and your son's story better.

 

Megan

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I just wanted to tell you what my experience has been with vocal tics. My brother has TS and for quite some time it was off and on and mild to severe, Well anyway a couple of years ago I started giving my mother some lists of minerals and vitamins, the reason my interest was peaked was because my son has some issues, nothing that could easily be diagnosed, but im his mother and I know somthing isn't right, the Dr's did tests and the dr's answer to me was maybe its just how he is, my husband tells me he just doesn't try hard enough. He has attention problems and he is outright lathargic, very low energy, which is probably why he can't focus, he has always taken a little longer to be able to accomplish his goals, bed wetting, riding his bike, playing video games, and he is very spacy. I am still searching for an answer to some of these issues the spaciness and energy level is my hardest symptom relieve.

 

Anyway I began my quest to fix my own child and in the process helped my mother. This is what I found, when we fixed one issue another would arise, for instance, my brother was on trace minerals and vitamins, his vocal tics went away, over time he had to have b-complex vitamins added to keep the tics away, well eventualy he developed OCD, he had irrational fears and fobias, so we started him on stress releif herbs, and fatty acids, I was attempting to regulate his sleep cycle and really feed his brain the right amout of fatty acids to function correctly. Well all of his symptoms have gone away, but if my mother changes up his doses he starts to become extremely obstinant, he will disagree with anything you say and he starts to just cause havoc, for no reason. I am just dreading what will arise next, but it seems like when ever we think we get a handle on his symptoms change. My son doesn't nearly have as many issues Thank god, but all the same like your child he will be so hard on himself and cry that he isn't good, I think its a form of depression. Anyway I am new to this forum so if anyone has a sugestion please i'm always open to try new things.. Oh also we are currently doing the Brain Ballance program on both of them, so to be honest its so hard to tell whats helping, or is it a combination of everything. Good luck

 

liz

Liz, would you mind mentioning which fatty acids you were using? And, which stress relief herbs worked for you guys? Chemar has found that lemon balm and jasmine and chamomile seem to relieve stress the best for her son. I've tried the chamomile and the jasmine and they really haven't helped my ds at all. PS: how old is your son and how old is your brother?

 

Thanks,

Bonnie

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  • 3 weeks later...

Latest update...things are still going pretty well for ds. He has a throat clearing tic that is lingering and acts up every now and then. Have eliminated oranges, and tomatoes completely now after "challenging" them and getting increased tics. Bananas are my next challenge (sure hope not). Have added back kefir on a rotation and so far, so good...he is so happy to have granola and kefir again!!!! Definately have stopped fish oil and vitamin D, seen them increase his tics time and time again. He asked today if we could add his Natural Calm in the morning as well, will give it a try. He feels it would be beneficial. Are you kidding me? He's 9, and so on top of this! So impressed :D That's it on him for now. Have not seen any anxiety issues either since being on his multi so doubly impressed with the direction things are going with him. Not a cure...but definately a huge improvement!

My best to all,

 

Megan

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Latest update...things are still going pretty well for ds. He has a throat clearing tic that is lingering and acts up every now and then. Have eliminated oranges, and tomatoes completely now after "challenging" them and getting increased tics. Bananas are my next challenge (sure hope not). Have added back kefir on a rotation and so far, so good...he is so happy to have granola and kefir again!!!! Definately have stopped fish oil and vitamin D, seen them increase his tics time and time again. He asked today if we could add his Natural Calm in the morning as well, will give it a try. He feels it would be beneficial. Are you kidding me? He's 9, and so on top of this! So impressed :D That's it on him for now. Have not seen any anxiety issues either since being on his multi so doubly impressed with the direction things are going with him. Not a cure...but definately a huge improvement!

My best to all,

 

Megan

Thanks for the update, Megan! I'm thinking of ordering those progressive vitamins. We still wax and wane and I wonder what the future will hold. You know, for me I'd really like to find a good alternative therapy doctor because I'm feeling at a dead end with our naturopath these days. I just hate the fact that we'll have to start over again with someone new.

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Hi Bonnie,

We still have the waxing and waning as well but by this point the waxing seems easier to pinpoint to a trigger. Last night he started with the high squeal, we haven't heard this in ages as it seems to be linked to artificials, he was at a friends yesterday as it was a snow day here and sure enough he admitted to having a yogurt there. I am convinced that it was the yogurt and whatever was in it as far as colour and flavour. We still also get waxing around viruses etc but not nearly as bad or as long lasting as before.

I found for us, the majority of work and research and trial error came directly from us. Our naturopath is a great secondary source but I still feel that we have done the most work ourselves, it can feel really exhausting at times. I just can't stress the importance of diet enough though for our son, working in combination with the Multi.

I think 4Jack posted that Progressive can be found on Amazon now so hopefully makes it easier to find. I love the added greens etc. in it! I hope you can find a great dr. but if not hang in there, we've had to do this all without blood testing, allergy testing etc as he is a No Way, No How, No Needles kid. Would have been easier maybe but it is do-able. I really wish you strength and renewed energy...maybe a day to revive yourself...massage, facial, week in the Bahamas? :D Actually they all sound good, should take my own advice!

 

Take care,

 

Megan

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  • 3 weeks later...

Hi all, we have had a waxing period here again...seems to go with the virus going around our house. There is strep going around their school so am watching for that as well. After about a week of increased vocals he is mellowing again, I also suspect a new cereal we added recently but all in all things are still well. My 7 year old daughter has been eye blinking with intermittent small vocals and the 3 yr old is still making self sooth noises when watching tv or being read to. Soooo...trying not to get to worked up. I still can't say the youngest seems like a tic or if it is normal soothing habit?...I guess we'll have to just see what develops, but I am hoping watching their diets will be beneficial regardless. Reports came home...great comments from his teacher so multi etc. seem to be helping with focus and diminishing tics. Hooray! Nice to have others recognize the work he has put in!

My best to all...

Oh...just a quick question, anyone have issues with molasses? I don't know if it was simply the virus but his tics seemed to increase with this cereal and muffins I made, both had pretty high amts. of molasses. Thanks.

Megan

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Hi Megan,

 

A really nice full moon presented itself to us over the past week. Have you ever noticed there to be a waxing associated with that? I've never had any major moon related revelations, but it's always in the back of my mind.

Continued good luck with all your efforts!

Chris

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Hi Megan,

 

A really nice full moon presented itself to us over the past week. Have you ever noticed there to be a waxing associated with that? I've never had any major moon related revelations, but it's always in the back of my mind.

Continued good luck with all your efforts!

Chris

 

Thanks Chris. At this point I have not really paid enough attention to say for sure, but this isn't the first time I have wondered about seasonal swings, moon cycles etc. This time there was definately a virus but I really wouldn't rule out these others effects even on immune system. On that note...how are things going with your son?

 

Megan

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Hi Megan,

There was a time that a question like that would get a 10 paragraph response from me :)

 

Things have been pretty stable here. Last week did have a couple of days of slightly elevated tic activity in the evenings, which is really the only time I observe him other than weekends. I'm thinking that it was possibly related to a new cereal that hasn't been part of his normal breakfast foods. Even though the ingredients appear to be mostly benign, the first ingredient is cornmeal, and that's one I try to watch for. Funny though, because other cereals he eats list cornmeal as an ingredient--albeit not the first one--and they haven't made my X-list. Maybe it's time to double up my cornmeal lookout efforts.

 

I'm also recognizing the possible moon thing. I heard on the radio that in Native American loor the February-ish full moon (I'd say the last before Spring but I see that March has one that comes just before Spring hits officially) is spiritually significant, being that hunting is about at its toughest and it seems a good time for a gathering to ponder life's difficulties in an attempt to remedy them. So who kows? Maybe February's moon packs a whallop.

 

I also had a period of several weeks where, due to unusual circumstances, perhaps along with my easing up a little on some dairy foods (i.e., pizza), his diet went a tad bit off. But I've cracked back down. I'll allow him pizza once a month. (If anyone is reading, cheeses are particularly potent dairy-wise).

 

And I'm becoming curious to see how the summer will play out. His tics became noticeable around a year ago, but it wasn't until the summer that they became a concern. We're going to do our best to keep him occupied in order to avoid boredom and tedium (two of my favorite summer time activities). So we'll see what we can come up with.

 

Other than that, we're diligent about the usual things (supps and diet) and very grateful that they have produced the results that they have.

 

Thanks for asking!

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Just wanted to say that you all are doing such a good job at managing your kids diets, etc. I don't do any of that and I always have waxing and waning. The only real triggers I know are moon cycles(yes, the full moon can bring on waxing), environmental allergies, and stress(good and bad). Most of these triggers I really can't avoid. We use a HEPA filtration system in his room. My vacuum is a HEPA and I have tried NAET, as well, but didn't see any results from it. I still haven't gotten around to ordering the multi vitamin but I will probably do it soon. I also have been slacking off on giving him his magnesium, too. Right now we've got some major blinking and shoulder shrugging going on but they don't really amp up until evening for him. He has been back to taking melatonin more regularly and I want to back him off of it, but he has terrible sleep issues and he really likes how the melatonin helps him fall asleep quicker than usual. He said he's asleep usually within 10 minutes of turning out his light whereas before it was an hour, sometimes more. I'm still trying to get a good feel for using the melatonin. I'm running into folks who have kids without neuro issues who are being told by their pediatricians that it's ok to give melatonin, yet my naturopath wants me to shy away from using it regularly and he wants me to always give varying doses(I break tablets down to about 2.5 mcg to 4 mcg most nights but the doses are hard to be accurate about since the tablets don't break evenly).

 

Bonnie

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Hi All

I have been reading these posts with interest.

I tried dairy free with my DS but it didn't make much difference.

We are on organic as much as possible, omega 3, Natural calm and do Epsom bath salts.

I had though my DS tics ( sniffing, grunting) and eye blinking were calming down slightly as I sometimes saw him eye blink only once or twice a day. However, in the last couple of days we have seen an increase and change in the eye blink so it is now more exagerated and with a slight head nod at the same time. I really don't know what else to try!

My DS is 9. Have you seen a peak yet in the tics yet relating to age? Speaking to numerous doctors they all say that tics decrease with age. Just hoping we will be there soon.

Sal

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Hi All

I have been reading these posts with interest.

I tried dairy free with my DS but it didn't make much difference.

We are on organic as much as possible, omega 3, Natural calm and do Epsom bath salts.

I had though my DS tics ( sniffing, grunting) and eye blinking were calming down slightly as I sometimes saw him eye blink only once or twice a day. However, in the last couple of days we have seen an increase and change in the eye blink so it is now more exagerated and with a slight head nod at the same time. I really don't know what else to try!

My DS is 9. Have you seen a peak yet in the tics yet relating to age? Speaking to numerous doctors they all say that tics decrease with age. Just hoping we will be there soon.

Sal

 

Hi Sal, our ds is also 9. I can't say for sure whether his increase is due to age, and I do feel that due to his diet and multi etc. we are not seeing them at what would be their worst. My hope is we can avoid the obvious peak by maintaining his diet etc. but only time will tell. Our biggest issue right now seems to be around tv use, so we are far more strict regarding any screen time, especially before bed. Like you I am just hoping that with age we will see a decline, hopefully without any more increase prior to that time. My husband had very similar tics and found his were at their worst around ages 9-12ish and by the time he finished highschool they were very mild. He said for him it became easier to disguise them or change them to something less noticeable (most of his were vocals like our ds). Now they are almost non-existent...seems a long time to wait but does give some hope.

 

Thanks Bonnie...the diet stuff is not always easy, I find with every increase I am scouring all his foods etc. trying to figure out what I allowed in. Usually, there is a food trigger but sometimes we just have to accept that there are triggers and waxing that we just don't have any control over...

 

Megan

Edited by mommyfor4
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Okay post virus and full moon his tics went back to what we consider his baseline, but we did notice an obvious increase when watching tv (we have a plasma...just fyi). So this week we have gone 99% tv free and his tics have dropped again to the most minimal we have ever seen! Plus I've seen the best come out in my kids...they are really playing and reading and drawing and all those things that make a mother glow :wub: Not that we were even huge tv watchers but still, they were watching after school and before bedtime routine of bath, books etc. So at least 1-2 hrs a day maybe more on busier nights. Really excited by the results all around. We did know he has reactions to flourescent lights etc so should have done this sooner but just wasn't in that place yet, but I would definately recommend at least trying it for a week and seeing if it is an issue for any of our kids...just be prepared the first couple days with alternate activities or it can get a bit crazy :wacko:

Oh yea and we also realized with his last waxing that a new cereal we had been using was also a trigger although there were no ingredients that "should" have been a problem. Just goes to show how complicated this really is...yikes...must be really diligent, have eyes in the back of your head and the patience of a saint...shouldn't be that hard ;)

Looking back over the past few years I'm realizing my bad days are fewer, his waxings are fewer and shorter: although they still have the power to throw me for a loop and maybe just maybe we are on the winning side of this battle for once!!!!

 

My best to all,

 

Megan

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Latest update...things are still going pretty well for ds. He has a throat clearing tic that is lingering and acts up every now and then. Have eliminated oranges, and tomatoes completely now after "challenging" them and getting increased tics. Bananas are my next challenge (sure hope not). Have added back kefir on a rotation and so far, so good...he is so happy to have granola and kefir again!!!! Definately have stopped fish oil and vitamin D, seen them increase his tics time and time again. He asked today if we could add his Natural Calm in the morning as well, will give it a try. He feels it would be beneficial. Are you kidding me? He's 9, and so on top of this! So impressed :D That's it on him for now. Have not seen any anxiety issues either since being on his multi so doubly impressed with the direction things are going with him. Not a cure...but definately a huge improvement!

My best to all,

 

Megan

 

Megan --- Am I reading this correctly? You eliminated fish oil and vitamin D??? I am on Bonnie Grimaldi's program (have been for months) - and the fish oil and vitamin D vitamins are a big part of her diet. On top of that, my naturopath has me taking 5000 UI of D3. I read this email and just had to make sure I'm understanding you correctly.

 

Granted - I wish my bonnie plan and diet were giving me better results - has not been very good for the last couple months or so.

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