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Hi fellow members, one and all,

When looking over the forum for past info, I realize there are many members who have not posted in a long while or have just posted a handful of times. Well I for one would love to hear a shout out from you all if you are reading to please let us know how things are going and what progress you have or have not made. If things are going well for your child, we'd love to hear that and of course, any insight you have to what you feel has made a difference.

 

Roll Call... please check in!

 

 

Regards

Faith

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Hi fellow members, one and all,

When looking over the forum for past info, I realize there are many members who have not posted in a long while or have just posted a handful of times. Well I for one would love to hear a shout out from you all if you are reading to please let us know how things are going and what progress you have or have not made. If things are going well for your child, we'd love to hear that and of course, any insight you have to what you feel has made a difference.

 

Roll Call... please check in!

 

 

Regards

Faith

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Hi fellow members, one and all,

When looking over the forum for past info, I realize there are many members who have not posted in a long while or have just posted a handful of times. Well I for one would love to hear a shout out from you all if you are reading to please let us know how things are going and what progress you have or have not made. If things are going well for your child, we'd love to hear that and of course, any insight you have to what you feel has made a difference.

 

Roll Call... please check in!

 

 

Regards

Faith

 

Faith,

I think that is a great Idea!!! I would love to hear how others are doing.If they have had any progress or if maybe they just want to add there thoughts about certain things to try. Faith, I would love to hear how things are going in your neck of the woods( sort of speak). Also, if people could add what they have tried and what worked or didn't work would be great. Because you never know, maybe who it might help. Anyways I will update also too.I just don't have alot of time right now.

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Great post. Our son is almost 10 and coming up on 3 years since his first tics surfaced. He has never gone back to any body movements for close to 2 years now. He still has some blinking and some toungue movements but overall very minor. I have narrowed the main culprits to wheat, gluten and I think chocolate. We have him on a gluten free diet but he has never been diagnosed with Celiac yet. My mother is very extreme Celiac, and he seems to be pretty good following that diet. I honestly think that wheat effects his central nervous system, and I know I wouldn't be the first or last to think this.

He is also taking Bonnies supplements, Natural Calm and a pro biotic plus a digestive enzyme. We also have removed any artificial anything from all our diets.

I try not to assume his tics will get worse but take each day one by one.

Right now he is doing very good and if he has a set back, I know it will pass.

Lenny

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Our kids are almost 8 and 9 and doing quite well for the past 1 1/2 yrs, since we changed diet to the "candida diet". Plus we give them probiotics, multi vits, and enzymes. We also had them to NAET dr last year 6 times. If they would be the way they are now, forever, that would be great. Still a few things, but very minor.

 

Great to see your son is doing so well Lenny!

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Our kids are almost 8 and 9 and doing quite well for the past 1 1/2 yrs, since we changed diet to the "candida diet". Plus we give them probiotics, multi vits, and enzymes. We also had them to NAET dr last year 6 times. If they would be the way they are now, forever, that would be great. Still a few things, but very minor.

 

Great to see your son is doing so well Lenny!

Hi itsme, I just was curious if you can explain the "candida diet". My daughter's doctor gave me a diet and alot of things are contradicting. I read some diets on line but then ill read another one and it is completly different. I also give my daughter probiotics, multi , and she was on candex but took her off until I get her to do this diet right. Did you ever give your child Anything to kill the yeast? I want so much to buy candida clear but am to afraid of the die off effect.

 

Hi Faith, good post!

All is well here. This year has been pretty good. If she does not eat any of her triggers she does well. Im still concerned about the candida from the test that she took from Great Plains. I want her retested soon to see if there is any improvement. Her diet is much better but she is not on candida diet which I find so hard. She does have gluten free Macoroni now which I think helps her digest better. Last time we spoke you were having a hard time with the diet, how are things going?

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Hi Maryann,

glad to hear things are going well. It gives me more confidence that there is something to all this, especially diet. I am still having a hard time with avoidance, and I have not really adhered to our last Igg test, it was just too much, but in spite of that, he started to do well during the summer, but the vocal is kicking up again this last month or so, ... I can't seem to figure what our best plan is, but I am not stopping working on it. I am sometimes discouraged, but I know I will find the right formula for us. thanks for checking in.,

 

Faith

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Hi, everyone

 

Haven't posted recently and thought I'd give my status report. I still have vocal tics and OCD.

 

I had done spit test to see if i have candida issues and I do, but I never did a complete treatment of it. I do take probiotcs and I have cut down significantly on intake of bread, sugar, soy, chocolate, etc - everything I loved :)

 

I have been going to cognitive behavior therapy for close to a year but so far, no luck. I switched my therapist once in July (gave the first one six months, and then trying this other one now). I have much less distress over my vocal tics (embarassment, etc) which i think is thanks to the therapy but when i try to practice habit reversal, I can't seem to follow through. Most of the time when i am having vocal tics, my brain is as if it's 'buzzing' - i can't stop and think and observe myself objectively. So there's no way i can stop and start doing deep mindful breathing, etc. But I have recently asked my boyfriend to tell me to do the breathing if i start ticcing, so hopefully that will help. I have also noticed that I sometimes feel it (the urge to tic) coming lately. I do try to do deep breathing at that point but then i get distracted by something else and after a few breathing, I forget about it.

 

I've also started taking Stabilium lately. It's a supplement by Allergy Research and it seems to be good for anxiety (plus people w/ chronic fatigue). They say you should take 4 tablets for 2 weeks and then every other day. But i have upped my dose to 6 tablets a day after the 2 weeks as i had not seen any results - I do seem to have less anxiety but then that may be because the issues (friend's financial situation worrying me, etc) that's' caused my anxiety this year has resolved, and so it may be natural that i have less anxiety now. I certainly seem to have more energy - that, i definitely feel. I plan to continue taking it for another month at least.

 

As I noticed that my tics are often triggered by stress/anxiety (or sugar intake), I was (and still am) hoping that Stabilium would reduce anxiety = reduce my tics. Has anyone else tried Stabilium? (I've tried Rescue Remedy in the past and that never worked on me.)

 

As for NAET, I have not gone back to them but they have definitely helped me w/ my eczema so I am a believer in it - just not for tics but for allergies in my case.

 

I think that covers everything ^_^

If i see any positive results w/ Stabilium, i will post again.

 

Flower

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I don't get to this board much at the moment and when I do I never seem to have time to post anything. But I have some free time this weekend so am catching up! We have no family history of TS or anything vaguely in the autism spectrum as far back as anyone can remember. I firmly believe that his immune system is the culprit in his case.

 

In the 3 years since Sam first had symptoms of TS (he was 4 when they started), I would say that the clean-up of his diet (especially taking out aritificial colors) has helped the most. Also, getting him the Transitions lenses to wear in glasses has helped, as it became obvious that bright light was also a trigger for him. We have also been giving him digestive enzymes for almost a year now, and probiotics, as he had a very unhealthy gut. We have also cut out wheat and dairy this year based on allergy test results. I think that all of these things have helped him. He still tics every day but at a much lower level, EXCEPT during spring, when he always gets worse, without fail. This has to be due to his environmental allergies as we found he's highly allergic to most grasses, trees and weeds. We have tried using sublingual drops (thru our environmental doctor) to desensitize him but these have had no effect and so we'll start with shots through our traditional allergist next August.

 

Things that have not helped him - Sam's symptoms got worse a few months after onset when he got his MMR shot. With hindsight, I so wish I hadn't had that done, but I didn't know as much as I do now back then. I have not had him immunized at all since then, and don't plan to at the moment. Some supplements make him worse, definitely fish oil and taurine. Stress also makes him worse, be it good or bad stress. Things that appear to help him = magnesium and L-Carnitine and a safe and predictable structure to his day. Anything out of the ordinary will make him a little more edgy.

 

Hope this helps <_<

Sue

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Samsmom,

 

Hi, just wondering if you ever had your son tested for heavy metals in his body? If so, did you do anything to try to remove the heavy metals? My son tested positive for Cadmium. I was just wondering, what would be my best approach to pull it out of his body? Thanks Char....

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  • 2 weeks later...

Hi All,

 

I think lots of members will remember me. It's hard to believe but my sons tics began more than 7 years ago just prior to kindergarten. I won't re-tell our story, it is long and very similar to so many on this forum. I use to post frequently here and was pretty active on the old braintalk. I do pop in from time to time to see how everyone is doing. My thought and prayers to all the parents who are just starting down this road or are in the midst of it all.

 

We did it all with my son, vitamins, naturopath docs, diet changes (removing casein was the biggest help), acupuncture, vision therapy, the list could be a mile long....

 

It is hard for me now to give specific time lines...I never did keep a journal, I thought at the time it would be impossible to forget all we were going through...time does heal, and of course I have forgotten the specifics on most things.

 

An update on my son...

 

He is 12 years old and doing very well. He has been on azithromycin for maybe around 3 years or so...500 mg every 5-7 days. If we do miss his dose (life gets so busy sometimes and really when he is doing so well it is easy to forget!), I do notice a change. Overall though I would say that he is tic-free (maybe just the most minor of tics that only I could notice and even then I could question whether he is actually ticcing). Obviously, I think the azithromycin made a HUGE difference for my son but I do feel that "overall" he is outgrowing some of his PANDAS symptoms.

 

We limited casein, eggs, and chocolate for years. Not so much anymore. He is absolutely growing like a weed in the last year and is starving in only the way a pre-teen boy can be...he is a fantastic eater, not picky with any food and I don't find I have to monitor him much other than to say...NO POP!

 

As far as vitamins, I now just rely on L'il Critter Gummy Vites and L'il Critters Immune C plus Zinc and Echinacea (Immune Booster) from Costco (I use it for all of our kids)....and myself for that matter, because I HATE swallowing vitamins!

 

Our energies in the last few years have really focused on supporting him with his learning disabilities which are very severe. We did FastForward with great results, years of one-on-one tutoring and now this year his enrollment in Arrowsmith School which began in our city this year. The school was started initially in Toronto and now has centers throughout Canada, New York (New Jersey area I think) and California. This school has been nothing short of AMAZING for my son. He is thriving and doing wonderfully. The commitment is HUGE. He attends Arrowsmith school 1/2 days and then our community school in the afternoons. Our community school has been fantastic in supporting us, even changing the class schedule so that my son did not miss gym class and some of his more favorite classes. Attending our community school for just 1/2 days has been great for my son. He seems sooooo much more relaxed, and it is only now that I realize how STRESSFUL a full day of regular school was for him. He was truly amazed to meet other kids just like him at Arrowsmith.

 

He has lots of friends and is doing well socially and most importantly has a best friend that seems rock solid. We tried an endless amount of sports to find one that suited him (seriously everything under the sun) and he is now doing really well with wrestling and has been invited to wrestle with the elite team. He LOVES guitar and takes lessons once a week. Guitar has been a HUGE stress reliever for him and I have taught him to go in his room and play guitar when he is stressed.

 

Having said all of this, we still have our challenges, some days I still do feel like he takes more work than the other 3 kids put together but really things are soooo much better now. Time really does heal so much! With Arrowsmith the homework requirement is 1 1/2- 2 hours per night/ 6 days per week, he struggled with this at first but with some encouragement and bribery from Grandpa (I just found out about the bribery thing last week...:mellow: , He is doing well and thriving, really more concerned with the fact that girls are interested in him (he is shy), how his hair looks, and about the clothes he is wearing and wanting a PSP for Xmas...all really normal 12 year old stuff. He has a job shoveling snow which he is doing well at.

 

So for all of the young moms, or the moms new to this, take heart, with time things do become so much easier.

 

Ronna

 

http://www.arrowsmithschool.org/

 

http://www.cbc.ca/documentaries/thelens/2008/fixingmybrain/

 

http://www.cbc.ca/documentaries/natureofth...nchangesitself/

 

A fantastic book!

 

http://www.amazon.ca/Brain-That-Changes-It...8385&sr=8-1

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Your updates are making me a bit teary eyed! It is so nice to hear these stories.

 

My son is doing so much better now too. This is the first year that his conferences have been so positive. He is a bit behind on reading comprehension but they think he will catch up quickly. He is also a quiet boy and they would like to hear him speak up more but besides that he is doing great. They did not even have a concern for his spelling this year. I am more than thrilled with how far he has come.

 

 

His tics are mild at this point. I think for him the kids calm is a huge help. We still eat mostly healthy but he seems to be fine when we don't too. We eliminate most corn, and he has rice milk instead of cows. I don't eliminate it completely though, pretty much just in his cereal. I did notice that he has an increased amount of tics in the fall but I really think that is due to environmental allergies.

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