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It's very scary the first time around. I feel your struggle. After 5 years tic-free, it was also kind of scary to recognize that my daughter had started experiencing tics. But then we realized that we

Hi Kevin,

I read every single post in this thread. We began our own journey with our ds6 last May, when he started punching himself uncontrollably. We have since seen all sorts of tics, waxing and waning. I just wanted to know...what is your son's current diet situation? Is he eating completely normally, or is he still gluten-free, mostly dairy-free, etc. Also, do you still keep him on supplements and if so, which ones do you feel were the ones that made a difference?

 

Thanks, and great to hear of your success.

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Hi! Currently he's eating normally. He doesn't eat a LOT (but really should eat a WHOLE lot more given his level of activity) but what he does eat is a mixture of healthy food, normal food, and complete junk food. Over the past couple months we've really become laced on his supplements. We really should get back into it but I'm so sick of reminding him twice a day to take his pills. 12 years old and still needs to be reminded twice a day to take pills. Come on....

 

It's hard to tell which ones made a difference with his tics. I'm pretty sure Natural Calm was a big help. Other than that I'm fairly certain most of what he was taking was just making up for what he wasn't getting from his massively limited diet.

Edited by kevininma
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  • 3 years later...

Hi everybody, 

I received an email today asking for an update. I haven't really revisited this site since... well, apparently 2014. Seems like an update is overdue so here goes!

My son is now 16 and, although we've seen one head-nod tic come and go, he's mostly got it under control. I don't really have any control over what he eats at this age anymore so I try not to worry about it. He tells me not to worry about it so I don't. He's old enough to take responsibility for himself now. :)

On the other hand, my daughter (10) developed the same symptom as he did at that age, but so far no where near as bad. For the past 18 months or so she's had an eye-roll tic that really hasn't progressed, thankfully. We've limited her intake of salicylate but chose not to go full-elimination the way we did with my son. She would not be able to handle it the way he did. Every time we get a little more strict with her intake of salicylate-rich foods, we notice an improvement. Unfortunately, we just don't have the fight in us that we used to have and her symptoms are minor so far. Hopefully they stay that way.

Fun fact- For a while now (several years) I've had shoulder pain and tension that I'm now starting to believe are exacerbated by a tic of my own. I've finally saw an orthopedic who seems to think it's related to a pinched nerve in my neck, instead, but I'm not fully convinced. Tomorrow is my first physical therapy appointment for massage therapy. Hopefully it's that any not a motor tic causing these problems, but who am I to pass up free massage???? 

The human body is a crazy thing. There has been a LOT of progress made on salicylate research. I haven't kept up at all, though. That really would be a great place to start, though. Sensitivity to salicylate is a real issue and if learning about this one thing keeps someone from going through the massive elimination diet that my son went through, that would be a huge step in the right direction.

Hope this helps!!

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Kevin,

Thank you for writing this blog and letting us follow you through your journey.  I am.so happy it worked out for you and your family.  I just posted a very long post about my kids and admittedly I am worried.  I am so eager to work with our naturopath (we don't meet for two more weeks) to try and figure this all out but I feel like I don't know where to start.  Your post has been inspiring and has made me feel less alone and optimistic.  Thank you.

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It's very scary the first time around. I feel your struggle. After 5 years tic-free, it was also kind of scary to recognize that my daughter had started experiencing tics. But then we realized that we know what to do. So far it's been manageable. Hopefully it stays that way. 

Doctors may tell you that these things are only treatable with medications. For us, that was just not true. The neuro even rolled his eyes when I told him I was seeing a nutritionist rather than treating it medically. They have their schools of thought and not all of them are based in reality. You're taking the right path. Good luck!

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1 hour ago, KevinInMA said:

It's very scary the first time around. I feel your struggle. After 5 years tic-free, it was also kind of scary to recognize that my daughter had started experiencing tics. But then we realized that we know what to do. So far it's been manageable. Hopefully it stays that way. 

Doctors may tell you that these things are only treatable with medications. For us, that was just not true. The neuro even rolled his eyes when I told him I was seeing a nutritionist rather than treating it medically. They have their schools of thought and not all of them are based in reality. You're taking the right path. Good luck!

I am not sure if my reply format is going to come through okay, but just wanted to thank you for your response....it brought me to tears.  This is all new and like everyone else that has gone through or is going through this, I am feeling scared, overwhelmed and worried and have a million questions and thoughts....especially if both of my kids are having tics.  (My son alone was stressful enough.)  When you were first trying to figure things out, where did you start, how did you end up with going to a nutritionist, what did you do to get started?   Did you have a lot of trials and errors before coming across Thea?  I feel like I want to a full screening to see what, if any vitamins and/or nutrients may be lacking or too high, if there is metal toxicity, etc.  Did you run a gammut of tests and if so were they helpful? 

Thank you for your support....aside from my husband and doctor I haven't spoken with any friends or family about this and the support and advice is valuable.

This is my post that I just started if you are interested....it is quite long.  Sorry!

 

 

Kevin,

Thank you for writing this blog and letting us follow you through your journey.  I am.so happy it worked out for you and your family.  I just posted a very long post about my kids and admittedly I am worried.  I am so eager to work with our naturopath (we don't meet for two more weeks) to try and figure this all out but I feel like I don't know where to start.  Your post has been inspiring and has made me feel less alone and optimistic.  Thank you.

Edited by lovemykids
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I don't know if I ever wrote about this, but we started off following the same route as everyone else. Start off with the PCP who tries a few things then sends you over to a neurologist who tries a few things. That took several months.

It was during the neurology step where things went really bad. We had the world's worst pediatric neurologist. She started him on Clonidine which turned him into a zombie for half the day. The other half of the day he was manic. She switched him from the pill to the patch so he was more even keeled and gave us no instructions on how to make the transition. 

Long story short- we nearly killed him. The neurologist's malpractice nearly killed him. He was in Children's Hospital in Boston for two days to stabilize him after what was ultimately an OD. It was and remains to this day the lowest point in our lives. 

We abandoned that doctor in favor of doctors from Children's but that was pretty short lived. I wasn't willing to continue drugging him. It was the Children's doctor that rolled his eyes at the prospect of addressing it through diet. 

I knew Thea from a former business relationship I had with her. I knew her practices were VERY VERY weird (I still think they're weird) but ultimately, I was willing to try ANYTHING at this point. We made our fist appointment with her and the rest is in the blog. 

Her screening methods are unorthodox but I just let her do her thing and followed along. None of her methods were scientific. I didn't care. I was done with medical science by that point. We were working on hope with this one. Sometimes hope leads to progress. 

In our case it worked. I'm sure it's not the same for everyone, though. 

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Kevin,

Thank you for sharing, especially since it contains such personal details and I am sure evoked some emotions.  All I can say is wow and unbelievable.  I am so sorry you guys went through that....that is totally messed up and so very scary.  We put our trust in medical professionals as the 'experts' and expect that they know what they are doing....especially when it comes to kids.  I hope the first doctor you went to is no longer practicing. Regarding the doctor at the hospital, I can't believe he actually eye rolled at you.....gee, thanks for the help and support.  I guess it helped put you on the path you ended up on so even though it was pretty crappy to see that it seems lime it helped in the end, strangely enough.  Did your son's tics start of as.mild and then progress?  Did they ebb and flow before you worked with Thea or were they consistently mild or consistently strong?  My apologies....I hope you don't mind my many questions.

Originally I was very much looking forward to a pediatric neurologist referral but admittedly the more I read the more I am tempering my expectations that they will likely tell me it's nothing and my son will grow out of it and to just ignore it.  I guess we'll see.  If my daughter is indeed starting to show some signs, then possibly they will do a bit more investigating but who knows. (As it turns out, she did not show any tics today, though has some energetic bursts that I am not sure what to make of....normal for her?  Maybe.  Or maybe not?  Good ole guessing game.)

I am really really hoping my naturopath gets us on the right path and can help rule things in or out.  If not I am not sure what to do.  Fingers crossed.

Thanks again for your blog and your response.  I really enjoyed reading it amd especially loved the ending. :)

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It started off mild like most do and then progressed but then it waxed and waned for a couple years. We did just the opposite of what you should do. We made a big issue of it and frequently told him to stop. We really had NO idea what we were doing in the beginning. We're taking the opposite approach with my daughter and so far so good. Just keeping it chill. Like yeah, sorry honey. No ketchup for a few days. Here's something else. We don't really talk about it much so as to limit her concern about it.

Keeping it light is very important, in my opinion. You don't want to stress out your kids about this. It only serves to make it worse. Just namaste. :)

 

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  • 2 weeks later...

Kevin,

 

It was great to read your story!  Maybe I missed it, but do you have a contact for the person that you worked with for the dietary changes or an outline of the diet? Or maybe she has someone in the Atlanta area she could refer us to.   I’ve ordered 2 books from this site and not sure how much different they might be (Just ordered and waiting on arrival)

 

Nate

Edited by bernerchiro
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