Changing tics + coprolalia and copropraxia?!

[Katreya]

Hello all, I’m a new member and have been actively reading through the book very eagerly. 
 

I feel like I’m wading through a quagmire and just when we think we are getting somewhere, a new tic appears with a vengeance. it started in March this year and my son is 10 years old. 
 

We got a new xbox and as boys do, he began gaming pretty intensely. By the second week of March he had a funny jerk when he was sitting down, to the point I couldn’t cuddle him while watching a movie. Within about a week we realised it was something he couldn’t control, after initially telling him to cut out the weird habit. 
 

I immediately removed him from the Xbox and all screens. The jerking didn’t really stop and then he started to also make a huffing/snorting sort of sound (like forcefully blowing through his nose). It became quite constant and then we realised it was “tics”. 
 

fast forward another week and he had a friend stay over. They played handball and got to go swimming and generally were very loud and boisterous. Suddenly he started shouting “Picasso”. We couldn’t believe it! Excitement seems to be a major trigger but that can’t be the underlying cause! Another week of it rolled by and I began removing dairy from his diet. It became less frequent and I thought we were winning. Again, suddenly “Picasso” changed into the F word! He tried very hard to disguise it in other words, making it sound like “Fukushima” or “fugshima”, but it was still there and obvious and gaining us stares at restaurants. 
 

so I began removing dairy. Throughout this I must add he’s been on magnesium and a raft of other supplements as well as aromatherapy. some days were better than others. Then about a week ago, he started pulling the fingers. This is devastating as our son is not like that at all - he’s the kid helping the bee by feeding her honey and carrying her to a flower when other kids want to squash it or run away. He has the biggest heart and to see him looked at as a “brat” is really heartbreaking for me. 
 

has anyone else experienced this?! We went to a friends on the weekend and had a lot of dairy and sugar and today he’s been terrible. He’s also got a toothache and the dentist has given him antibiotics so I’m curious as to whether there’s been an underlying infection throughout?!

id also add that we have added screens back in, as it was the only time he actually stopped ticcing - which is weird as I see most people say TV flared their kids up? He has been playing a simple game on the iPad the last two days though and I am wondering if the game is different to the TV??

[Chemar]

Hi Katreya

I'm at work so just a quick post -

The only treatment that really helped my son years ago when he had coprolalia was Cognitive Behavioural Therapy CBT) with a therapist who understood the involuntary nature and other aspects of TS tics. In fact, CBT helped with much he was going through at that time! (We did not deal with copropraxia)

re Screens - although my son ticced more back then when he was on a screen with lots of flashing (over 20 years ago) - the modern day screens are so much better that I can understand the iPad being ok for your son and likely others too.

We found keeping a daylight bulb lamp on while my son played games  or watched a screen also helped - and honestly his relaxation playing a game after keeping tics in through the school day was greater than the tics it may have triggered.

Hope you get more replies and find info you need to help.

[Sheila]

Hi Katreya, and welcome to the Forums. So sorry you and your family are dealing with this. Your son sounds like a wonderful boy. I'm sure it's very hard for him to feel like his body is out of control.

Does he have a history of allergies - or have you noticed chemical sensitivities?  Does he have a history of any digestive complaints? 

It sounds like you have made some good efforts. You may need some professional support as well. Are you in the UK?

Your boy could be triggered by chemicals, in a swimming pool and/or elsewhere. It's not easy to focus on a single environmental aspect, if indeed those factors are playing a roll. 

I don't know if you have been communicating with him about his tics, but sometimes it is helpful to refer to them as allergies and you could ask what seems to bother him, using this chart http://latitudes.org/downloads/triggers/kids/what-makes-me-tic.pdf     You would know if you think that might be helpful.

Sometimes it is a relief for kids to know that it is something causing his body to do things he doesn't like -- and then you can work to make changes to help. 
This would be an environmental approach, not that it is the answer for everyone. But since you have seen triggers already, it could be that this is moving in the right direction. 

I would suggest you please keep a log. You can find one here, if you are interested. 

I hope this helps. . . best wishes to you, Sheila 

 

 

 

 

 

 

 

 

 

 

[Katreya]

Thank you guys! Sorry for the slow reply. Managed to forget my password then realised what it was again a few days after. 
 

I’m also curious as to how PANDAS gets diagnosed? My son has had sore teeth for a while now and just got put on a round of antibiotics. It’s been nearly a week and he still has sore teeth so must be quite the infection; could this contribute or is it the wrong kinds of bacteria? We were giving him probiotics, magnesium, vit c and iron as well as a few other vitamins in rotation like b6, fish oil, etc. he’s been dairy free fully for a week, not noticing a dramatic difference yet but I get dermatitis from lactose so there is a family allergy. 
 

I should add we have no ADD/ADHD or dyslexia/OCD in the family or him and it really just blindsided us out of nowhere. It’s like they won’t stop! All these new ones keep piling in. I’m still reading through the book and almost feeling like there’s so many things it could be it’s so hard to start!

did you guys have a time frame for new carpets too? Our carpet was done in January and he started in March. Not sure if that’s a causation too … I vacuum every day so thought any fumes would be gone by now? We are also in a new build with a/c so mould shouldn’t be an issue … 

 

Feeling like I am grasping at straws sometimes trying to figure out the cause. Sadly I’m stuck in NZ and we have NONE of the specialists listed. No environmental therapists, no immunology therapists — their idea of allergy testing was a few scratch tests for nasal allergies a few years ago that all came back negative. 
 

Sorry to make this so long … I may almost make a diary/journal to try and track what helps and what we try.

[Katreya]

Hi all,

so I just wanted to post an update. I was very sure after all my research that this would have something to do with diet; exposure to something was making him more allergic than he should be, so naturally dairy was my first instinct because I can be sensitive to it. Fast forward and I had a friend who went to a holistic practitioner for something totally unrelated, but I know how seriously ill she was, and she said she had basically been great for the last 2 weeks! No drugs, no steroids, no migraines; sleeping through the night, etc. I said "Who is this guy?!"

So off we went for a 10 hour road trip to see this fellow, and within an hour he had been able to divine that my son had heavy metal toxicity, mostly arsenic, a zinc deficiency which was leading to other things like enzymes not being produced in the gut, and with a gluten sensitivity/intolerance (he rated it on a 5 out of 10). He was then able to make up a tonic, which consisted of some Homeobotanical mixtures (Cerebra, BB, & a mineral mix called ConeMin I think).

We took the first 6x drops on the way home and DS fell asleep almost instantly, and slept for an hour. On waking, instead of doing one tic or another every 20-30s, I realised it was now broken up by much larger intervals. He suddenly wasn't doing the throat clearing/jerking immediately, just the odd "fugshima" (Coprolalia). We went to dinner on the way home, and yes he did flip the fingers probably twice, then he had another dose before we continued on our journey home.

For that next 3 hour drive on the way home, I counted literally maybe 5x swear words. That was it! No finger flipping, no jerks, no weird coughs and grunts, NOTHING.

So we are less than 24 hours into it, and his whole mood and personality has shifted. Lately he has been very negative and grumpy, no matter what we do he would always view it through a negative lens which was not like him. He was listening to a guitar song and said "I can't play that song really good... YET!" and I said "YES! YET! That is the key! All things are achievable." 

What an amazing change. Again, it's lunch time, and the only tic he has displayed is the odd semi-disguised f-word, when usually he would show a whole range every 20-30s. If it wasn't a jerk, it was a grunt.

I have also gone out and bought a bunch of gluten-free foods to lighten his toxicity load. I highly, highly recommend anyone else to have your child checked for heavy metal toxicity, and then have it chelated out with natural therapies. I'm now debating becoming qualified in the Homeobotanicals because I have never witnessed such an immediate and measurable change! I'm so happy and relieved. 

[Chemar]

Hi Katreya

Again a quick post from work for me - but  yes, my son had heavy metal toxicity  (blood test confirmed) - his was mercury, believed possibly leeched during the pregnancy from my many tooth fillings? He had specialized treatment and detox that made a big difference, but was not a "cure" per se as for him, the situation was more multi-faceted.

There is quite a lot of info here on the forums as well as Latitudes main section on heavy metal toxicity impacting neurology.

You must be so relieved to see these improvements!

[Katreya]

Hi Chemar,

thank you for your reply! Sorry I disappeared from here for a while as we went to a few practitioners and I have been journalling foods and also back-tracking a lot of different things. 

I wonder about poisoning while pregnant too - with one practitioner calling arsenic, I actually realised I did a whole lot of painting/staining while I was pregnant, and I think I sort of half heartedly wrapped a scarf around my face as I was outside, but you can actually breathe in a LOT. Hope you got your mercury fillings removed! My husband did a few years ago and seems a lot better for it. Amazing what doctors say is safe and then years later it turns out that it isn't... (Ergh, MSG for example!)

I am going to pipe up and say we had an amazing week this week where he hasn't needed his tic remedy at all, and that I have it pretty well nailed down what triggers him now.

I think we had rid ourselves of the arsenic, and now the two things that CAN set him off is:

Too much time on the xbox

and MSG in foods... (noodles, chicken stock, veggie stock, etc). I've actually started a blog about this! Hope to share it soon.

[Katreya]

I thought I would treat this as a quick journal to anyone else who might be interested;

The initial remedy made for us by the herbal practitioner was a mix of a brain tonic, blood bitters, and a general mineral mix. My friend who is a naturopath began talking to me some time later (June-Jul) and we decided to add a few things to the tincture at her recommendation, so I got a bunch of natural herbs and began mixing our own.

We had a really bad stage of regression over the local school holidays here, where our son was swearing, pulling fingers, grunting and jerking all over again, all every 10-20 seconds, which was heartbreaking as we had gotten to the point where they were barely noticeable. This is what made me go and overhaul his mixture (I'm still hoping to do the actual certificate in the botanicals too!).

We added in herbs for the immune system, as well as arnica for inflammation, and some extra mag-specific minerals (liquid) and then some herbs for purifying the blood. This all brought him back down in time for school. What caused the flare up? I think an increase in restaurant food (we were travelling a lot) and a lot of gaming (it was pouring with rain and there wasn't much else to do, and I got blasé thinking because he had been doing so well, that the games wouldn't do anything to him... eek. I was wrong.)

So fast forward to now, and he is back on track and hasn't needed any tincture for the last week! It's amazing how much it affects his learning too.