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I haven’t been on this forum in a while, but wanted to add an update as well. My son was virtually tic free again from November until the end of February. Only a very soft breathing noise at times, which was totally unnoticeable unless you were looking for it. We felt this improvement was due to being very strict with his diet again (organic, gluten/dairy free, dye/artificial free, lots of fruit and veg), staying busy and getting lots of exercise, and supplements (magnesium threonate, elderberry syrup, methylfolate/B12).

Then the tics returned with a vengeance the day after he was given a load of horribly artificial and dye-filled candies and chocolate at an extra-curricular activity (despite our telling them not to give him these things). 😡 That was 3.5 weeks ago, and the first 2 weeks were pretty bad with a major, constant facial grimace reappearing. I was so heartbroken, but at the same time it helped to feel there was a somewhat controllable reason for it happening (diet). Now we are at 3.5 weeks since that happened, and it I see definitely subsiding. Still there but less. I am really hoping that soon it will be minimal or gone. 

I have days where I feel optimistic and that this will be manageable, and days (nights) where I cannot stop worrying about what if it gets worse, and all the what if’s. Overall he is a very happy, busy, social kid who is showing up for life just great. He has no idea anything is wrong. I’m thankful for that. It’s been one year now since it all started for us, which is a bit hard to swallow as he now officially meets the criteria for TS. I am still interested in looking into PANS more, since his original onset was very sudden and came soon after being very sick. It’s just hard and very, very expensive here (CA) to find doctors that are knowledgeable. Anyway, long story short, I am grateful for the progress we’ve made, and hopeful that with time and living a healthy lifestyle we will make more progress. My next goal now is working on myself and my own anxiety and attitude. 😅

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Hi starfish

Sorry to hear of the setback, and do hope you find more answers, as well as that your son's system will stabilize again soon.

I remember only too well how awful it was when the tics flared for my son after exposure to the yuck stuff!

Once we learned that he had MCS (Multiple Chemical Sensitivity, diagnosed by an Allergist who ran excellent tests) he really understood why I was being so strict about the artificial stuff  in food, as well as environment (one of his biggest triggers is perfume and regular household chemicals etc)

Best to you

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Hi Starfish, 

I feel your pain and frustration. My son also has had periods of no tics and then suddenly he starts having them again. He has gone a good two months with absolutely no tics and then started having them again. It definitely is an emotional roller coaster. I feel that he tends to get them after being sick, when he is tired or eating candy. He hasn't had the breathing tic since August, now it's mostly blinking. I also notice a change in his temperament when he has tics. He's a bit more moodier and even has signs of ocd. Praying for our little guys. I know what you mean about the worrying, it's never ending. My son also has no idea what's going on and his teacher says no one notices anything, she hasn't even noticed anything. Hang in there! Thank you for the update! 

 

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Hi

i posted a while back re my little boy. I’m looking into PANDAS for him. He went 3 months without any tics and then overnight had panic attacks and onslaught of multiple tics. He also had what looked like tonsillitis and so had him tested for Step which cane back positive. We are now being referred for a second opinion as both times he has come out with tics he has had strep. I also find that his behaviour totally seems to change. He is usually a very happy and laid back child. But he changes to being very moody and extremely easily upset and emotional with OCD type thoughts. My son also doesn’t know anything is going on but I feel like I’m living in a nightmare. I would say to def get your little ones checked for PANDAS aswell. All of the stuff I’ve read and looked into is so heavily connected to immune systems and sensitivities. It’s a mine field and im just so thankful that we all have this site to talk and raise things. 

Hoping and praying that we all find answers or at least are able to find the triggers for our little ones. 

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Hi Jonal,

My son started having overnight panic attacks as well. For the last 3 weeks he wakes up around the same time every night crying, very angry. One night he was crying because he didn't say good night to us which he did but it wasn't his usual 3 times. He always has to say good night 3 times. He's usually so moody, one night he got mad because I was touching his pillow and he said my hands were dirty. Definitely OCD. He's only 3  years old. I definitely need to research PANDAS more. His first neurologist tested him for strep and I believe it came back negative. I definitely feel I need to research this more. Sending the best wishes your way and I will continue praying for our little ones. 

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Hi Ronime,

PANDAS is linked to strep but PANS is other types of infection aswell. Def look into  this as I feel strongly that this is what is happening to my son. Here’s a link for the UK pandas organisation but I’m sure there is a US one. I’ve also emailed them directly for info and they are super super helpful:

https://www.panspandasuk.org/resources

God bless and keep me updated on everything. You aren’t alone in this!

 

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  • 4 months later...
On 10/21/2018 at 9:58 PM, evemac said:

I know it's hard not to despair, but my son who is now 14 was diagnosed when you was 5.  We did so much for him: diet/vitamin protocol, Occupational therapy, chiropractic work, meds, CBIT, and I would say to some extent, all of these interventions helped.  He feels pretty comfortable talking about having Tourettes and while he did have some difficulty with peers on occasion and I had to actually request a 504 by 8th grade to deal with the dysgraphia, I also give his teachers a well written article on disinhibition and what that could look like in class.

I think advocacy and self-advocacy is important to our children with TS.  Unfortunately, people still don't really understand it but the best news is is my son has gone through this and is a strong academic and athlete and what's even more important than that is that he likes who he is!

Keep up the good fight.  I remember crying at night with him when he was ticcing so hard he couldn't sleep.  I have been there! You are not alone!
Eve

All the things helped a bit ? Chiro? You did Cbit w him ? You tried meds ? Vitamin led and diets and OT?  

 

What vitamins ? Which diet? What did OT do? Chiro ? 

 

My son suddenly developed non stop head tics at 14 1/2 Sudden.  Explosive.  Non stop.   All of a sudden.  Normal one day and not the next.  Not sure how he feels   He hates talking about them and won’t.   

I feel helpless.  Didn’t want Cbit.  Was embarrassed.  Went twice.  Held the tics in. The counsellor didn’t see any tics yet I said he tics every four seconds. She made him show her his tics after having me leave the room.  He hated being there. Didn’t want to go again. Went for physio a few times but held in the tics while there.  Went for acu but held the tics in while there.  The practitioner thought he didn’t have anything. Son held in tics while there.  Pediatrician felt the same way.  Then I took video footage and showed all of them.  They were shocked at how extreme it is.  I don’t know how hard it is to suppress  because he won’t talk about it.  It must be shocking to him because it is suddenly there.   Before he went went aware of little ones when younger.    

Before when he was young I knew that food dye would have him blink.   Video games too.  Paint and renovations made his jaw move a bit   Before.   Now it’s just so intense and the extra triggers are everywhere as a teenager.  

He doesn’t want meds.  He doesn’t want acu.  He doesn’t want cbit.  He went to massage.   Considering a naturopath.  Maybe he will be receptive.  The people stare at him when we are somewhere and he’s not around us (parents).  Like at the store.  Like in the mall.  Like at the park.  We see that. We give vitamins.  It’s very hard.  He had little tics before that weren’t so noticeable to anyone.  But suddenly at 14 1/2 they are because of an explosive onset.  

Haven’t gone to OT.  Havent home to naturopath. Haven’t gone to Chiropractor.  

They started after abx and an injury to the head and neck.  The abx made the tics explosive. 

 

Dont know what to do

does anyone have a similar experience ?

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