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positive update on ds


mommyfor4

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Megan, thanks for the update. Continued success! - Chris

 

Thanks Chris, this is really exciting...it's the first winter that he is not regularly getting sick and we generally were seeing increases from Nov. to Feb. in his tics. The "apple tics" passed quickly, he is back to minimal again mostly throat clearing. They are worst when he is reading out loud...frustrating for him but he is so happy about where he is today!!!! :D Most people don't even recognize his tics anymore, what a Christmas present for him, fingers crossed that it continues to improve.

 

Megan

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Megan,

 

I have learned so much from reading this thread and the posts of others. I am so glad that you have found some things that are working for your ds.

 

May I ask where you all buy your Progressive chewables? I looked up the website and do not see where you can buy it online, and see that it is made and distributed in Cananda. I am in the U.S.

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Megan,

 

I have learned so much from reading this thread and the posts of others. I am so glad that you have found some things that are working for your ds.

 

May I ask where you all buy your Progressive chewables? I looked up the website and do not see where you can buy it online, and see that it is made and distributed in Cananda. I am in the U.S.

 

Hi Kat,

Seeing as I am in Canada... I get mine from our local health store and I did see on the Progressive site that they sell in stores across the U.S., maybe you can request it at your local health store, I know ours is pretty quick to order most things for us. On a quick search I could only find a Canadian site that sells it, it is www.aviva.com but it is more expensive than I pay even in Canadian funds! My best guess is to ask around and see if any local health stores carry it or would order it on a trial basis...We really have seen great results for our son. If you can't find it Lisa (mythree) and Chris (Cj60) have found one they like as well, I believe it is Kirkman Spectrum Powder? and Chris is in the U.S. so he may be able to give you more info as to where to buy if you are interested. I'm sure they will post their results once they see this. Hi guys :D ! Best luck

 

Megan

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  • 2 weeks later...

Hi everyone...things continue to go pretty well although he did finally get a cold, still no chronic bronchial cough though!!!! Over the past week with this cold and excitement of Christmas plus the possibility of hidden food triggers when at family dinners, he has had an increase it his throat clearing tic and a few others to a lesser degree. We also have not been so diligent with his epsom baths and nightly Natural Calm. Hoping things will again decrease with his cold clearing up and return to a more regular routine.

 

Merry Christmas and Happy Holidays,

 

Megan

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The cold has passed and with it the increased tics, back to minimal tics and a better routine. Definately need to watch for soy as I think that was a big trigger over Christmas. Seems most foods that eliminate wheat and dairy substitute soy, but all in all it's getting easier to handle holiday foods and catch triggers along the way :D Extended family is trying hard as well and that makes it soooo much easier....Ahhhhhh, A Christmas miracle...they are really trying to understand and adapt family meals in favour of his restrictions...and seeing results...gets them somewhat excited too! That's it for now, hope everyone's well.

 

Megan

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Megan, I'm glad you've made it through the cold and the holidays, and that family is supporting you. I'd acknowledge the importance of "baby steps," but I know how differently different people perceive the do's and don'ts regarding treating kids, so having anyone support your efforts is big, especially when it's family! I'm very lucky in that regard too! Thanks for the well wishes, and hope you have a great start to your new year.

- Chris

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Megan, I'm glad you've made it through the cold and the holidays, and that family is supporting you. I'd acknowledge the importance of "baby steps," but I know how differently different people perceive the do's and don'ts regarding treating kids, so having anyone support your efforts is big, especially when it's family! I'm very lucky in that regard too! Thanks for the well wishes, and hope you have a great start to your new year.

- Chris

 

Thanks Chris...there have been increases again the last few days but he did have some foods with traces of dairy and soy...big no no's for him. Waiting them out and hoping he will again decrease to minimal before back to school. Too many late nights, too many unknown triggers and a messed up routine and inconsistent times with multi and magnesium. He seems to need to take his multi very consistently breakfast and dinner and with all the craziness has not been as routine. Will need to be far more diligent again now that routine is reestablished. How are things with your son?

 

Megan

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HI Megan,

Glad to hear things are going well for your son. That is so exciting to hear!

Lisa

 

Lisa...good to hear from you! How are things on your end? We are seeing decreases already, let's hope they continue to minimal with routine and better food monitoring. His mild dyslexia seems to be positively effected as well with the multi etc. or maybe he is just learning to adapt to using his mind differently but all in all things are well!

Take care and look forward to hearing your update at some point.

 

Megan

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Megan, I'm glad you've made it through the cold and the holidays, and that family is supporting you. I'd acknowledge the importance of "baby steps," but I know how differently different people perceive the do's and don'ts regarding treating kids, so having anyone support your efforts is big, especially when it's family! I'm very lucky in that regard too! Thanks for the well wishes, and hope you have a great start to your new year.

- Chris

 

Thanks Chris...there have been increases again the last few days but he did have some foods with traces of dairy and soy...big no no's for him. Waiting them out and hoping he will again decrease to minimal before back to school. Too many late nights, too many unknown triggers and a messed up routine and inconsistent times with multi and magnesium. He seems to need to take his multi very consistently breakfast and dinner and with all the craziness has not been as routine. Will need to be far more diligent again now that routine is reestablished. How are things with your son?

 

Megan

 

Hi Megan!

We're doing well on our end. Tics are to a minimum. The holidays (major for him, including Chanukah, Christmas, New Years and birthday spread out over three weeks) brought with them many exceptions. But we were ready to make them and see what happened, since it's been around 5 months since we started with the careful diet and supplements. We've been super strict with the dairy all along until recently, when we've let him indulge in his favorites, including rice pudding, at Indian restuarants on a few occasions. His birthday was Monday (he's 9 now, so unbelievable...) and we made him some pizza, which contains two things on our list that we decided to allow: tomato and cheese. No obvious reactions, but I have noticed some intermittent minor waxing over the holiday break and will be keeping a closer eye on him now that the regular routine can start again.

 

I've recently added a supplement (molybdenum) to his multi (am) and his Natural Calm (pm). I thought at first there might have been something to it, but I'm not so sure at this point. I've given him a few days without it and will try it again in a couple more days before coming to a verdict on it.

 

And at his last dr. visit several weeks ago, when we went over some tests he took a couple of months ago, it was decided to start him on a caprylic acid supplement called Caproyl, to address a higher than normal level of some intestinal undesireable--don't have my notes handy at the moment. I've only recently gotten around to starting it, and will give it for around three months, so it will be a while before we notice if it has any positive effect.

 

We're all in a much better place five or so months in to it than we were before we modified our son's diet and started looking to supplements. Something to be very grateful for as we start the new year!

 

Take care,

Chris

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So things are starting to mellow some but there are some tics holding in. I am highly suspicious of the orange juice he had during Christmas break. Had been reintroduced over thetime off sort of without realizing it...started completely eliminating it a few days ago and will watch for results. Was always on my "not so sure" list. His sister had been showing transient tics over the past year, very minimal but with removal of dairy and all artificials and on the multi have not seen any in months. Hers were very infrequent and quiet but if you've seen a tic, you definately know a tic! Keeping an eye on her but hoping a clean diet and multi early will be more preventative. She is 7 and did naot have any similarities to him in any way. No early signs of sensitivities etc. so just hoping and praying that hers are simply that...transient. If not I guess at least we are already schooled on how to approach it. That's it for now...will keep you all in the loop.

 

Have a good day everyone.

 

Megan

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Thanks for this update! I hear oranges and citrus in general are rough on some due to the salycites. But you likely know that already! Thanks for your detailed journey here. So helpful.

 

Andrea

 

I have considered salicylates but he is fine with lemon and lime, blueberries and some others high in salicylates. I continue to look, but with him it seems to be more individual, for example apples are a no-no but apple juice and sauce are fine. Wish sometimes it was more obvious...would make things easier for sure but we're getting there. Don't even strive for tic free anymore just keeping things minimal and more balanced, the rest we'll deal with as it comes. My husband grew mostly out of his tics so hopefully our ds will have the same, just so grateful that we can battle it even in the smallest ways. Look forward to hearing how your journey goes as well! Hoping for positive things...

 

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

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