New and need help...is this site still active?

[Deanit]

Hello,

My 6 year old son has recently developed a motor tic that has made me concerned, and I found this site after googling like crazy.

Over the past year, he did have a sniffle for a few months...seems to have diminished.  And some shoulder shrugs...not frequently...maybe every couple weeks?

However, about three months ago, he developed chronic cough after a cold.  Then a few weeks ago, he started to say his neck hurt and he began to do this tilting the head back...like he was relieving soreness.  We thought it was just sore...however, the head tilt did continue.  Then last Saturday, he came home after a day out and had this big neck roll, head twitch happening while watching tv.  Along with the cough.  I knew something was different.

The next day, I saw some head shaking...low key...back and fourth.  That night, the head twitching was quite bad while he was watching tv. With the cough.

We have an appt. to our pediatrist on Friday.  

I initiated some changes in routine...earlier bed time, Epsom salt bath.  And began to change input of sugar.  

Yesterday, we saw minimal head shake, neck roll in the morning.  He did have a little bit of neck roll after school.   I gave him popcorn for a snack...and he coughed a lot after that.  

However, we saw no head roll or head shake last night while watching tv and during our night routine and putting him to sleep.

This morning there was just one neck roll that I saw.

 

I tried to give him some new vitamins...B...and fish oil...in capsule form...that didn't work...will get drops.

He said, "I know this is for my neck and cough."  I said, "Why do you think that?"  He said, "Because I do that sometimes."

Other than that we do not mention anything to him. 

 

Where am I?  Where do I go?  What do I do? What is happening?

[Chemar]

Hi Dean,

I just wanted to welcome you - I am at work so can't post more now.

Do be sure to take a look at the pinned threads here that have good resources/info and also the main section  that has a wealth of info

https://latitudes.org/conditions/what-is-tourette-syndrome/

 

[Deanit]

Thank you for the welcome Chemar.  I have read through this site and know that you have much experience and wisdom for this.  I see that this site was once very active; however, it seems to not be so now?  I see that many people have read my post, but no one has commented?  Is it because there are just not many people here anymore?  I could really use some help, so if there is anyone out there willing to mentor me a bit, I would greatly appreciate it.  I'm really struggling.   I have read through a million websites that basically say the same thing:  if it is motor and vocal, it's TS.  My son has motor and vocal, so I guess we're talking TS here?  I have started a lot of the regimes on the site, but I really don't know what I am doing.  It's way better to talk to people who have experience to just read a website, so if anyone out there can help walk me through this, I would be forever thankful.

[evemac]

Hi Deanit,

I am sure you are looking for support ( I remember being where you are right now), and how I was searching everywhere for answers and help.

Here's what we did:
1.  Our pediatrician said the tics were nothing to worry about.  I went ahead and made an appointment with a pediatric neurologist.  Look for someone who specializes in movement disorders. We did medicate for a number of years.

2.  We changed our son's diet and went to a naturopath (who also happened to be an MD) to do major testing (blood workup, etc) to see what sorts of sensitivities our son had and what sorts of supplements would support his system.  No gluten at all for years.  Limited processed food.  

3.  We looked for triggers: Chlorine, lack of sleep, when he would start to get sick, stress, excitement.

4.  We had a regular routine with a chiropractor, OT and did biofeedback.

5.  I was lucky to have a TS support group in the city where we lived when he was little. 

6.  We talked to the schools and asked for a 504 (this is primarily around dysgraphia and extended time). This will most likely follow him to college.

7.  He is athletic, so he did soccer and now plays football.  Look for strengths that your child has, and really focus on those activities and social avenues.

He will be a senior in high school next year, and it has been a long journey. He is doing very well - still tics sometimes - but he is really a well-rounded, wonderful human.  He did go through some for some years, but he is stronger for it in my opinion.

 What I remember is that sometimes certain things would work, and other times they wouldn't.  Keep trying and be patient with your son's system.  Sometimes it takes a while for their body to reset.

Good luck!
Eve 

 

[silver77]

Hi,

I've been experiencing this for the last year.  Last June, my then 6 year old daughter (now 7, will be 8 in August) started sniffing constantly.  We did the usual allergy testing and ENT visits and nothing was identified as causing it.  The sniffing lasted from June - October.  Then seemed to stop but since December, she's had a number of different tics - vocal - sniffing, throat clearing, a hmmm sound.  Motor - nose scrunching, eye blinking, lip pouting, scratching, knocking her knees together.  I would say the real noticeable tic is nose scrunching and it is happening a lot right now (like 6 times every minute, all day long).

We saw a pediatrician in February, who wasn't overly concerned about it.  She was looking for other co-morbid conditions, and thinks ADD is a possibility.  We've been monitoring her for that, but seems to be functioning fine.  We go back in August for another visit.  

The types of tics come and go, but some sort of tic is always present.  For a few weeks it's blinking, then for a few weeks it's nose scrunching.  However, as of now she knocks her knees together, nose scrunching, scratching and sniffing.  I'm giving her magnesium and a B complex vitamin but don't think it's really doing anything.  I 100% expect for her to be diagnosed with Tourette's at our appointment in August as it will be 1 year by then.  

I'm so sad and not dealing well with it at all.  My husband, who is as cool as cucumber about everything, it doesn't seem to phase him.  He keeps telling me that there are so many other worse illness to get, this is nothing.  While I agree, it really doesn't help me cope with it any better.  I worry about her future and the bullying that could come in school.  I truly hope it gets better as she gets older, lots of the studies say it will, but I'm so concerned that she will be in the minority where it doesn't.  

While I don't think I really helped address your concerns about what to do, I just wanted you to know you're not alone.  I find reading people's stories helps give me some comfort. 

[Deanit]

Hi, Silver77

This is really hard, isn't it.  My parter is also much more relaxed...I can't tell if it is denial or she really is ok...maybe for now since nothing has been diagnosed.  

I went to the Pediatrician yesterday, and she was adamant that it was not Tourettes; although, I am not convinced.  She says that she feels there are two different issues happening.  Couch--she thinks this is allergies because she saw some drainage in his ears and throat and a little swelling in glands.  Two--the neck twitch/roll she thinks might be a nervous twitch.  She did set up to have the allergies tested...I had to push for her to include food allergies (she said kids at 6 haven't developed food allergies yet).  We do blood test today for allergies.  We will also be doing an EEG to rule out epilepsy.  After that we will meet with a neurologist.  She was so confident that it was not Tourettes that I must admit, I did feel better, but I just don't know.  With all I've been reading, he has the signs.  Anyhow, she said if it is a nervous twitch that she would send us to a psychiatrist for him to talk with who will begin doing some CBI therapy.  Wow.  I was happy that she was already looking ahead for solutions...she didn't just tell us to forget it and carry on.  

We have gone gluten-free, sugar-free (for the most part), and I give him mag, vit b, fish oil, and multi.  We have also been doing mag foot baths and baths.   I've limited tv to an hour/day.  It's hard to tell if anything is having an affect on anything as now I am hyperaware of every move he makes.  

I feel that we probably have a long road ahead of us.  We go on vacation in just over a week, and I am terrified that this might bring on a whole new series of tics, and I just came out of such a dark depression over the last couple of days, it will be hard if anything progresses...and to not be home.  

Anyhow, thanks for sharing your story.  Never in a million years did I think I would be dealing with something like this...I've been worried about so many other things...didn't think about Tourettes.  It's hard.  

Thanks for listening...

[Deanit]

Ok, I'm struggling big time again.  All I'm doing is obsessively googling information on Tourettes.  I'm having a hard time being present for my boy because I watch constantly looking for other tics.  My wife is very bothered with me and keeps telling me to get out of the house and go for a walk, but I can't.  I've lost 12 pounds, and I'm exhausted.  My wife things I am making to big a deal...she doesn't see the tics like I do.  She thinks I am overreacting especially since our pediatrician said it is not TS.  I do have a psychology appt. tomorrow because I really do feel like I'm going mad.  I just don't know how to handle all of this.  I so desperately want to believe what the pediatrician said, but I have read too much on the Internet to know that they typically will offer a false sense of security.  I'm just so scared.  If you read this...thanks for listening.  This is the place I turn when feeling the most overwhelmed.  

[Chemar]

Hi Deanit

I do understand how you feel but your wife also has a point - you are not helping, and especially not helping your son, by obsessing over these tics.

This may sound tough, but when my son first began manifesting tics and I was freaked out, one of my wise friends told me to consider visiting a hospital ward for terminally ill children to get things into perspective. I didn't - but it was the reality check I needed. Tics, Tourette etc are not terminal, as distressing as they may be. The more you focus on them, the harder you make it for your child! (as well as for your wife and yourself)

Of course you want to help your child and yes, doing your online research is part of that. But the purpose is to gather helpful info - not find "worse case scenarios"

Even if  this were to be TS - why do you feel that is so severely distressing? People with TS frequently are highly talented and live very full lives, despite their tics....and many also seem to have tics diminish or stop completely as they pass the "hormonal" years.

You are losing precious time to just appreciate your son for who he is, whether or not he tics.

Focus on the things you can help with without obsessing over the things you can't control.

The information here, and on the main website, on tic triggers and other things can really be helpful - but again, just do things with a balanced outlook and a step at a time.

In the long run, that will help all of you most.

Again - I DO understand your distress - but this advice comes from over 20 years of walking this journey with my son and I urge you to take a deep breath and focus on the wellbeing of your family as a whole.

[silver77]

How are you doing @Deanit?  Any allergy results for your daughter yet?  
I can relate with the googling.  From time to time when I’m really struggling,  I have had to promise myself to not google anything on it.  I’m on vacation now for the next 2.5 weeks and I’m stressed out about that as I find the weekends I’m at my worse as I don’t have work to occupy me.  I spoke to my mom about it the other day and she said something that has really stuck with me - all the things I’m worrying about haven’t even happened and may never happen, just focus on the now.  I keep thinking about that everyday.  While I think my daughters tics are quite noticeable, it’s also because I’m constantly looking to see what she’s doing.  My older daughter who is 11 has never once said anything about my younger daughters tics, so I keep in mind that maybe other kids won’t notice or say anything to her. 
 

I hope you are able to distract your mind and enjoy your upcoming vacation!

[Deanit]

Hi, Silver77...thanks for the check-in.  I actually went to my GP and got on some anti-anxiety medication, so I hope this will help with my obsessive negative thoughts.  We also leave for vacation which I was way concerned about as I don't want to spend my whole day staring at my son (he is 6) looking for tics. I constantly go through this battle of  overreacting to hoping that the things I'm seeing are benign and transient.   He currently has two tics which are not very noticeable: gentle head shake...I actually think he might be doing this because of the sound--either of popping the neck or the crepitus...it's hard to tell...then is this truly a uncontrollable tic or just a habit?  He also has this ongoing cough which has also become very minimal.  He tested allergy for dust mites.  We removed all pillows and old rugs and old couches...bought new leather couches, and have cleaned the house and gotten rid of possible dust holders as much as possible.  We also bought new latex pillows for his room and all the dust mite covers...the are on the way.  The pediatrician also said it might be the beginning of a hay fever allergy and we will begin an allergy medicine protocol for 30 days.  We'll see.  We have more EEG testing and more allergy testing (scratch versus blood) coming but not until September because I live in Belgium and most things shut down for the summer. 😕 We leave for vacation in a few days.  A wonderful trip we've had planned for months...a dude ranch in Croatia.  We have all been really looking forward to it.  We'll drive and stay in some German castles on the way.  We will then drive up to Hungary to visit his grandparents (first time since COVID hit). I was/am hoping that this will be a wonderful experience; however, I am also terrified that I will be consumed with watching for tics.  I think, in the least that it will be good for all of us to get out of the house and go and have fun...I just pray I can take my mind off of it for a time.  My wife (we are in a gay marriage--I am American and she is Hungarian) is way more concerned about how I will handle the trip versus how our son will handle the trip.  I am trying really hard to stabilize myself, but it is a daily struggle.  I'm hoping the medication will help.  On top of all the worry, I feel like a weak parent.  I feel like I am not fully present for my son which just adds a layer of guilt to the whole mess.  Chemar mentioned how things could be worse...he is not in a terminal ill ward (which of course, I agree); however, the thought of my son having to struggle and deal with possible negativity is almost more than I can bear.  Anyhow, thanks again for your communication.  Please send tips for vacation relaxation during these next few weeks...I think we could both use some good coping skills! 🙂. Where are you spending your vacation?

[Chemar]

Hi Deanit

Just checking in to see how things are going with your son? I do hope you are all managing to have a truly happy vacation.

[Deanit]

Hello Chemar…thank you for checking in.  I was on a horse ranch in Croatia with no internet connection, so I was able to get out of my mind a bit.  We ate back in a city, so I find myself googling again.  I continue to be in great fear…I was hoping that during this vacation that all of these little tics would go away with all the nature and sunshine, but no.  The little cough continues…we are on a 30 day protocol for what the pediatrician says may be hay-fever allergy.  He now crack his neck with a slight nod…it’s not very noticeable, but I notice it.  He also will sometimes do a neck roll…I think to also crack his neck.  I asked him today and he said he had to do it to feel comfortable.   So, I am so incredibly frustrated because I have had two experts tell me this is not TS, this site seems to indicate that it is (I know you are not diagnosing, but the guidance and advice infers such…and I trust what you all say because you are living it also).  Chemar, you asked earlier what I was so afraid of if, indeed, it is TS.  Well, EVERYTHING I read online with kids and people with Tourettes is that they have a a way lower quality of life for the kid and the parent.  I know you have an exception with your son, but either I’m googling the wrong thing or the people who are living “normal” lives just aren’t sharing their experiences.  We are taking the vitamins, we have changed the diet, cut back screen time, magnesium baths, etc., we are pushing full and positive experiences, and offering an abundance of love…bit I still hurt like .  Chemar, you also mentioned that thongs, of course, could be worse…my so  could have a terminal disease.  I, of course respect what you saying and certainly understand the perspective, but it is a hard pill to swallow to hear that the only thing worse than your child having TS is that your child could have a terminal disease.  I mean no disrespect.  I am just hurting and I am scared. Thanks all for listening and continuing to offer feedback.

[Chemar]

Hi Deanit

Good to hear you were able to relax some without Internet and in Nature.

I do want to reassure you, our situation is not an exception!  In the 2 decades I have been around Latitudes/ACN, I have encountered far more situation where things improve than get worse, and many people whose tics resolve or who go on to have fruitful lives despite tics do just get on with life, rather than document their success/relief etc etc.

I stay here as this site was so instrumental in helping me through the worst times all those years ago, and so to me it is paying forward.

Please please don't lose hope, and rather seek ways to improve things rather than reading those "worse case scenarios"

Have you read any of Sheila's books? There is a wealth of helpful info and resources in them, and they are also available on Amazon. I am not just trying to promote her books - they really have helped so many people and she has dedicated so much to keeping ACN/Latitudes going in order to provide that hope and help!

Tourette Syndrome: Stop Your Tics by Learning What Triggers Them

Natural Treatments for Tics & Tourette Syndrome

[Deanit]

So we have been back from our vacation for a couple of days.  During our trip the tics (coughing, neck cracking) were very minimal.  If you weren’t aware, you wouldn’t have noticed.  I was feeling hopeful.  We continued with gluten free food on the road for the most part and sugar free and all the vitamins (fish oil, b, multi, and magnesium, and we traveled with his new dust mite free pillow-his blood test came back with dust mite allergy.  He had PLENTY os sunshine and lots and fun and running around outside.  However, since we have been back home, the neck cracking has become way more pronounced.  He stretches his neck back in order to crack it and then sometimes also turns it to the side to crack.  The cracking is often loud.  Yesterday, he became frustrated and cried because in doing these moves, he said it wouldn’t crack and that was bothering him.  I massaged his neck with magnesium lotion which he said made him feel better, but he continued to turn his neck to try to crack it.  I put on some “past tense” roll oil on his neck (terra oil which is supposed to relieve tension), he also said that helped.  He had a friend over later in the day, so the cracking was minimized, but came back later.  This morning when he woke up, we all piled in the big bed together and cuddled.  He started rolling his neck again, and he said, “Mommy, the cracks are more quiet today.”  I asked of that bothered him and he said it did.  I tried to ask him about what he  felt before cracking his neck, and he said it made him feel comfortable.  I asked if it was tense…but he didn’t really understand what I meant.  He said, “Why do you think I crack my neck?”  I told him it might just be a little tic and nothing to worry and he will probably outgrow it.  Otherwise, we don’t talk about it or mention it.  Has anyone else experienced this neck cracking tic?  Is it possible it will fo away?  What did you find helped with this tic?  We see a neurologist Monday.  Thanks for continued guidance and information. 

[Deanit]

Also, Chemar…I have been reading all the books and doing all the things.  We haven’t cut dairy yet, but may fo there next.  Thanks for being a mainstay on this site to offer ongoing hope.