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Question for those that have found relief


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Have been wanting to ask those that have had success in reducing tics for their children or themselves. At what point did you feel like or say you had success, Was it when tics got to a certain level and then stayed there for a period of time and what time period would you class as having success?

 

While my son is doing quite well and minimally tics compared to where he was at i guess i'm scared that it might not last forever, At what point do i say ok this has been his level for x amount of time and therefor we've successfully found relief for him?

 

 

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My son's initial tics and OCD were so intense that it was debilitating. Meds made things much worse. So when we started the dietary modifications, supplements and other natural treatments, and saw the frequency and intensity of his waxing phases dramatically reduced, it was pretty obvious that we were experiencing success!

 

One thing that helped greatly was to come to terms with the fact that people with TS tic. Period. So we understood that we were not necessarily going to see the tics totally disappear.....but to see them go from the predominant factor in his life, to something in the background....well for us that was tremendous success!!

 

I can only answer from the TS perspective, and obviously if the tics are being caused by another factor, full remission is often the goal.

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How do you know is genetic TS though. Both of my children and their cousin, all boys ages 7 to 11, have begun ticcing but there is no family history other than these three now. Their female cousin, age 8, has rheumatoid arthritis and eczema. This all too coincidental to me.

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I have the same question my2sons, I wish there was a test already!

 

I think i'm finding it harder because i started changes so quickly into my sons tics snowballing he never or may have never got to a debilitating degree, I'm sure not willing to undo all our changes to find out though.

 

He still tics, Some facial grimaces every now and then and a vocal a couple of times a day, Some days no vocal or a slight "tsss" or "ssss" is what we have atm and he and i are very happy with this level as it's not interfering and is easier for him socially.

 

It's 6 months into the year i decided to dedicate to making him and our family the healthiest i possibly could with the hope that it would minimize his tics, I've finally come to terms with the fact that they are just tics and he will most likely always tic.

 

Hoping the next 6months continues and his health improves more as we are still looking into allergies, The pyroluria, heavy metals etc

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Sorry, I had to chime in when I saw mention of JRA. The original outbreak and subsequent isolation of borrelia (Lyme) bacteria from the children in Lyme, CT, gives the bacterial infection it's name.

 

We also have no other instances of Tourette's in either my or my husband's family.

 

I spent at least a year modifying diet (gf/cf, low histamine, low salicylate, low oxalate) and made reems of food/reaction charts. Sometimes I would find improvement, and sometimes not. It was never lasting. We did multiple allergy tests; food, environmental etc., and the only test DD reacted to was the histamine injection.

 

Ticcing would escalate with infections, especially strep. If a fever was involved, the ticcing would decrease during the fever, but resume shortly after.

 

After years of daily charting using an Excel stacked bar chart of symptoms (levels 1-10) with protocol change/illness notations, I have come to the conclusion that our daughter's motor/vocal ticcing is the result of toxin buildup, resulting from bacterial die-off caused by either the killing action of abx or increased immune response.

 

DD's MTHFR deletion may be somewhat responsible for this inability to detox, and we are using methylated versions of the suggested B vitamins, although that and the use of a paleo-type (gf/cf) diet never made a dent in ticcing when there was a die-off reaction due to protocol change. We have never done any other genetic testing, perhaps we should.

 

There were times, especially when DD started pulsing tindamax (or grapefruitseed extract) that her ticcing (and other PANS symptoms) would ramp from 1 to about 6 in a couple of hours. After a couple of days (and several epsom salt baths later) ticcing would resolve to baseline.

 

We have been weaned from abx for almost 3 months now, and are using herbal protocols to address her still positive bartonella titers. I am seeing the same reaction, albet at a much lower level, with increases in her herbs.

 

It seems that now her infections are at a lower level, bacterial die-off is reduced, and I see a corresponding decrease in ticcing. Most of the time it is absent. With an increase in herbals, ticcing increases for two days, and then declines back to 0.

 

These are just my observations, but in our case motor/vocal ticcing is definately linked to bacterial die-off and her inability to properly handle the resulting toxins.

 

Sorry, Chemar for posting on your board if it isn't appropriate. I know you do a wonderful job helping others with genetic Tourette's!

Edited by rowingmom
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My daughter also had debilitating tics. She missed lots school due to the nature of some of her motor tics. Her vocals weren't as bad but still there. After doing CBIT for 8 months, we see very few if any tics. I had at first thought it was a wax and wan type thing and waiting for the flare up but she is still going strong. She seems so confident in the controlling of them - that I am starting to relax a little. I am hoping I can soon just sit back and relax soon and think of major tics being a thing of the past for her.

But to answer your question. I do believe that she has successfully found relief for her tics. I am so so happy for her, but not quite ready to drop my guard and claim a victory. lol. But feel like that is actually in our grasp for once.


However, I have another daughter who has tourettes and not a CBIT candidate at this time - so starting the journey with her now.

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  • 1 month later...

Hello! I am a mom of a 7 year old boy who has Tourette's syndrome. He has been showing signs of it via vocal and facial tics for almost 3 years now, and I have finally come to the point where I am desperate for direction on how to best parent him and to help find his triggers. I just found this forum, and while I am completely overwhelmed by the information (and abbreviations!) that I have been reading, I am excited to corroborate and learn about exactly what each of you have gone through and tried with your children. Anyway, I am especially interested in diet, supplements, what to test for (and which labs are credible) and the possible association with tick borne illnesses and Tourette's. I grew up in Long Island, NY and was tested for Lyme a few times because of symptoms I had been having since third grade. I still, as an adult feel like I have struggled with Lyme, but the western blot test I had was inconclusive at best. My husband has struggled with tics his entire life but we can't find Tourette's syndrome in either his mom or dad (unless they just don't realize it.) I also have a friend who lived across the street from me who has the same age son displaying many of the same symptoms. Since we were both pregnant and raised our sons in the same environment (unfortunately a neighborhood bordering a coal train, a natural gas and petroleum pipeline) and next to an industrial area, we have been so seeing if that's a factor as well. Sorry this is a lot if information, but I'm starting from scratch and willing to consider anything and everything to help. He does not have any learning disabilities, but at school he gets in trouble for distracting the class with his "sound effects." I have tried over and over to explain that he can't control himself (right now it's squealing nonstop) but I need to go ahead and file for an IEP and have some accommodations. I was really hoping that this would all go away, but the fact is that it's getting worse and worse and I would love some help with what to do, and also

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Hi Musicmom,

 

You'll find lots and lots of info here, but I would suggest that, if you can, you find professional help as you start to sort things out.

I found help through the "Finding medical help" link at the top of the topics page of this forum. I went to www.aaem.com and identified some practices that were within my range. I was fortunate and found a great environmental practice a couple of hours away that helped me with everything from establishing a diet for our son to doing appropriate testing. What I think I value as much as anything from that practice is that they work with people with all kinds of medical issues that traditional medical practioners are simply unqualified to work with. So finidng a medical professional who listens, understands, and is willing to think beyond the regular patterns of doing things is very comforting and a great first step if you can manage it.

 

We started with modifications to my son's diet. It was very challenging at first, but in the long run it has had a tremendous impact on his health. At a minimum, eliminating all colorings, artificials and additives is a good start when addressing dietary matters. Junk in food has adverse affects on anybody's health at some point, and it seems that today's kids are being affected by it more than ever.

 

It sounds from what you've said that like there are could be several environmental factors affecting your child's health, which again points to the need for some professional guidance. And patience.

 

Good luck, and congratulations for taking positive steps to help your son.

 

 

Chris

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