Tics or tourettes

[ronime]

As many people on this forum I am beyond devastated...my 3 year old boy started rolling his eyes 4 weeks ago,that progressed to facial grimacing,facial grimacing while lifting an arm or leg..for a few days he also grimaced and did a fast breathing twice and then stopped...last December he was blinking and I mentioned that to neurologist but come to think of it it wasnt fast excessive blinking...my husband snd I panicked and took him to eye dr right away as we figured he needs glasses,which he didnt...our oldest daughter started wearing glasses at 2...anyways I feel the blinking wasnt a tic.......so these tics started 4 weeks ago....neurologist told us "for as many tics as your son has I have a feeling it's going to be tourettes"...that crushed my heart......I've done research and I know the different tics diagnosis,simple vs complex,vocal etc...I guess he considers the breathing to be vical....have any parents out there been in my shoes and it ended up being provisional?....another thing is he wants to touch and smell everything!!!!also I've read it's not common for tics to appear in a 3 year old it would be something else....they did eeg and it came back normal...they dont want to do mri

[Starfish]

We are in the midst of a somewhat similar experience, which began when my son was 4.5. I find it so frustrating that there isn’t more information on factors that might influence a child’s prognosis with tics, or any way to predict outcomes.

Personally what has helped me some is the knowledge that Tourette’s doesn’t have to be the big scary word I thought it was. Actually, it seems that regardless of whether it’s officially Tourette’s or not, tics are likely to improve or even go away by adulthood. In the past few months I’ve reached out to lots of parents, through this forum and others, and so many of their children, even those who had quite severe tics/TS, completely outgrew it by teenage years or at least ended up with only milder tics that they learned to manage. I don’t think the severity in childhood necessarily determines the outcome, and a Tourette’s diagnosis doesn’t mean it can’t get better. 

Of course the scary part is we don’t know what will happen. Some people’s tics don’t go away or get better. I know I worry a lot about how this will play out for my son and how it could affect his life. So I completely understand how frightening it is and how devastated you feel. After being in it for 6 months, I’m learning that it does get a bit easier, the tics go up and down, and there are things you can try like supplements and diet changes. I’m trying my best to be optimistic, but it is a daily challenge. I’m always here if you want to talk.

[ronime]

Thank you so much for your response. I do feel a lot better! I did read that up to 25% of kids get tics and less than 2% have them longer than a year. Praying for our little guys that they're in the 23%!!  I want to do research so I could know how to help my son and at the same time doing research could really hurt us because of what's online, especially youtube!! It seems like the worst cases are online and youtube. The neurologist told me to stay off youtube, he said the majority of tics are hardly noticeable.And yes, tourettes does not have to be the big scary word.  What supplements are you giving your son? I wanted to try magnesium however his pediatrician wasn't too thrilled about that idea. He suggested I just give him magnesium rich foods. I also bought some doterra oils and made a peaceful child blend, started putting that on him in the morning and evenings. It's been a few days now so hopefully that will help!! Again thank you so much for your response, praying for our little ones!! 

[Starfish]

Omg do not watch YouTube!! So far with my son we have tried magnesium (I like the liquid magnesium glycinate by Genestra brand—my son is 60 lbs and takes 125mg, which my ped was fine with), as well as topical magnesium lotion and epsom salt baths, calcium and D, B6, a homeopathic drop called Tic Tamer, omega 3, probiotic, L-Taurine and L-Carnitine (only used these for a couple weeks at a time), passionflower tincture, and a multivitamin. We also used Biocidin (a natural antibiotic) recommended by a naturopath in case PANS could be a factor. Wow that’s a lot when I list it!! I bought most of this on amazon. We also did food sensitivity testing, cut out dyes and artificial stuff, and tried eliminating dairy, gluten, and eggs. I just ordered some essential oils too.

It is pretty hard to tell what does/doesn’t work because his tics fluctuate so much that you never really can pinpoint what caused the change or if it was just random. We just came out of 2-3 months with very minimal tics—I was starting to think they might be gone for good—but then in the last couple weeks they returned pretty strongly, even some new ones, so that was very discouraging. Hopefully with more time and repetition we will see more clear patterns and be able to get some control.

I can tend to go a bit crazy trying to research and solve the problem, but at least it helps me feel like I am doing something! I keep reminding myself that at least he’s happy and healthy, so many parents face much worse things, but it is still hard not to feel so heartbroken and worried sometimes. It’s so hard to see your baby like this. I hope you guys find some things that help and that things will get better for both of us!

[ronime]

I totally feel your pain.I start getting so depressed when I picture him getting bullied and suffering one day due to that, getting  depressed due to bullying etc. I feel such a tug at my heart when I think that way. My husband is my rock and keeps  reminding me about how he's a healthy happy boy, there's parents facing much worse things like you said.He reminds me he will be a strong boy that won't let things like that get to him because that is how we will raise him.  When I think that way I feel better. I think we just need to take it one day at a time. I am so sorry that the tics came back worse after 2-3 months. Gosh, I could only imagine the happiness you felt when you saw them gone and then for them to come back again. Does he have motor and vocal? My son apparently has both motor and vocal, he did this breathing thing a few days and neurologist said that was vocal. He also wants to smell EVERYTHING and wants to touch everything. I know a lot of kids with tics have OCD but for me it's hard to draw the line, what is ocd and what is normal behavior of a 3 year old. Thank you for the  list of supplement, I will need to go onto Amazon and do some shopping! 

[Starfish]

Yes my son has both motor and vocal, mainly one or the other at a time. Currently it’s mostly vocal (a short fake cough noise and a sort of throat clearing noise). It’s hard with younger kids since they can’t tell you what’s going on and there’s such a wide range of “normal” behavior. I find my husband and I have a similar dynamic to what you described (and I also see it a lot on this forum where the mom is the more emotional one about it). My husband is much better than I am at staying calm and thinking positive. I just find it so hard to watch and hear the tics sometimes, and I can really go into a spiral of worrying about the future. I know it is so important for our kids that we stay and calm and confident and accepting, so I am really working on that. It does not come naturally for me at all, haha. It helps to talk about it with others here, since I know no one in real life who has dealt with this. 

[ronime]

Yes, it definitely does help to talk to others on this blog. As common as the doctors  say  this is I have not met one other person that is dealing with this or has dealt with this. And yes, it agree its so hard to distinguish a vocal tic in the younger kids. I think the only vocal tic son has has is the breathing one but who knows because he's always talking in baby talk, repeats things etc, especially when he's in his bed trying to go to sleep. The motor ones have been eye rolling, grimacing, grimacing while lifting an arm or a leg or sometimes both. I guess that would be a complex tic. The neurologist said they don't treat tics unless it interferes with their life and if that happens he can prescribe medication that can get rid of up to 90 percent of the tics. I believe it's guanfacine that he prescribes at first. It hurts to even think of one day needing to medicate my son because some of the side effects of those medications are horrible Thank you again for all the wonderful information, encouragement....best wishes for you and your family. Praying this will pass for us both! 

 

[evemac]

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

[ronime]

Hi Evemac, 

I felt such happiness when you said your son is strong academically and a strong athlete !! I read so much about people going through deep depression and having anxiety. So happy your son is doing great! 

Can I ask, have your sons tics gotten better? Have they been pretty consistent or have they "waxed and waned" as they call it. They say that they start to get better in the teens. I hope they have! I read somewhere too that usually by adulthood the tics are gone. 

I am just taking t his day by day and doing a lot of praying. Thank  you again for your response, i definitely feel like i am not alone! :)

 

[evol]

Hello. Just wanted to share my story. I am 42 and have moderate Tourette’s. Tic disorders run all throughout my family, I believe on both sides but much more prominate on my moms side. It was mild from 7-14 and then it really amped up from there. It went from about a 2/3 to a 6/7.  I did have a lot of strep and ear infections leading up to the increase. I never got diagnosed. My parents “threatened” to take me to the dr but never did. I definitely didn’t receive the support I should’ve but, then again, I didn’t want to face it. just learned how to cope and manage. I do wish I would’ve been given the tools to at least be able to talk about it. I was always hiding It. The few times someone would ask, I would quickly change the subject. I was never bullied (to my face) and had friends and boyfriends but it has affected my confidence for sure.  It’s still just as active now as it was 20 years ago but the worse years were high school and college, most likely due to the stress and trying to sit in class and not tic all day.

I have 3 kids who have all expressed symptoms.  The genetic factor is strong.  My oldest daughter had a couple mild tics that started at 4.  When she was 10 she had a nose crunch that was getting worse and I noticed she was drinking a lot of milk at that time. We eliminated milk and it disappeared almost immediately. She has virtually no tics at 16. My 12 yo son started an eye roll tic at 10 and is transient. It was there for a year or so, on and off but now I only see it when he is stressed. My 11 yo daughter would qualify for a Tourette’s  diagnosis as of the last few months. She’s had several different motor and vocal tics since 7 (usually just one at a time) that have increased and are changing frequently. They still pretty mild overall but are increasing each month. She also has always had anxiety. We have not been to a dr yet but we tell her if she feels bothered enough by them to let us know and we can go. We’ve tried magnesium and fish oil and other various supplements....can’t really say if I think they’ve helped or not. I do notice an increase when she is eating junky food. 

I will say, I sometimes feel like I’m living my life waiting for the other shoe to drop. I never quite let my guard down even after dealing with it for so long. I try to remind myself “be grateful for what it is, and what it is not”. It’s not a fun disorder by any means but there is no way to predict the future so all we can do is take it one day at a time. I completely understand the panic and worry. If I could take on all of my children’s symptoms I would.  The best thing you can do is love unconditionally, support and encourage, and try to keep your head up. 

[ronime]

Thank you so much for sharing your story and encouragement...I am definitely thankful for what it is ,what its not..I have a friend that lost her 5 year old to cancer 2 years ago snd lat her husband a year later...I definitely am thankful for my childrenis health ...I just worry about him suffering,being bullied...I shouldn't assume that's going to happen,that is what I'm learning..I'm sure God will bless him with wonderful friends that will be his support system along with his family...again thank you so much,wish you and your family the absolute best!

[Jonal5680e]

Hi, I found this thread yesterday and so wish i’d seen it months ago. I was going through this at exactly the same time as you guys and it’s like reading my own thoughts and fears about it all. I’m interested to know how you are getting along now and if there’s been any improvement?

my son is 6 years old and started with eye blinking at end of reception. We live in England. A week before he was due to start 1 year at school he started doing this funny thing like a quick breath in. It was only very subtle but it wasn’t ‘normal’  then came the neck stretching and facial grimacing which was repetitive. It was absolutely heartbreaking to see his beautiful little face contorting like that. I asked him what he was thinking about when I would see it was getting worse and he said he didn’t want to be a big boy and that he was worried about going back to school. I also had an operation coming up at the end of September and he seemed to think that he had caused my injury. Which of course he hadn’t. We bought Sheila’s book from Amazon on natural remedies for tics and Tourette’s and I must have read it in about 2 days. I’ve done so much research and constantly googling things!! Driving myself mad half the time but there a lot of information out there. It’s the not knowing what this is or is not and the thought of him being bullied that really scares me. Whenever I read things it seems that in America you have a lot of integrated physicians etc but over here we just don’t seem to or at least I can’t find any. It’s very much going to the paediatrician and him saying I have to wait and see what happens! That’s not good enough for a mother though! 

I should add that we started him on fish oils, magnesium supplement and good multivitamin. We also stripped back the iPad and iphone time and massively reduced sugar in the first few weeks back in last year end of August beginning of sept. After his first week back of school his tics has reduced. By the end of sept it was just the flight breathing one left really with an odd next stretch in there. And after I had my op sept 28th the following week they seemed to stop. It’s now early Feb and I do see one tic when he’s tired but other than that it seems to be waning. It’s good but still it’s there and could resurface again if he’s stressed as I think this is the major trigger for him. He’s also quite anxious child and im worried he might have adhd. 

We aren’t licensed for some of the better medications that you have in America either. Not that that would ever be my first port of call. Dan is such a creative and funny little beauty and I would never want to suppress his nature.  But it’s still at back of my mind as a failsafe if diet/environmental changes don’t work. 

Anyway. That’s my story so far. So pleased to have found somewhere that there’s like minded people going through the same thing. The medical profession over here just don’t seem to know or understand it at all!! I live in north England. Does anyone know if any specialists here?

many thanks

Al

[ronime]

Hello Al, 

I'm so sorry to hear about your son. I love this forum because we have such a big support system. Doctors say tics are very common but i don't know anyone personally that has experienced this. I live in CA. I have taken my son to two neurologists and one was a bit pessimistic the other one was more optimistic. The first one said it's basically tourettes. He considered the breathing tic a vocal tic. The other neurologist from UCLA didn't agree, she felt it was a motor tic and she felt the prognosis was good that the tics would most likely go away. Since September they have come and go. He hasn't really done the breathing thing anymore. Right now he hasn't had any tics for about a month or so. That's happened another time before where he didn't have any tics for a month and then from one day to the next the tics were back. Oh how I cried!!! I thought they were gone. At that time he started with the facial grimacing. I find that watching television makes it worse and sometimes when he's eating he will do it more. Right now I am just hoping theyre gone but i know how tics "wax and wane" as they call it and i know if i see a tic again i will be a crying mess!! Like you I worry the most about the bullying. In CA they have cognitive behavior therapists that will help kids with their tics. They teach them how to tell when a tic is going to happen and make them do something else instead of the tic. I think that works for older kids. My heart goes out to you, I know how painful this is and i truly wish you and your little boy the best!! 

[Jonal5680e]

Hi. Thank you soooo much for replying to this. With dans tics I’ve noticed he does it when really tired and actually when he’s eating just like your son! Since I posted that I’ve had an awful time. Full abrupt onset of tics again yesterday! He’s been doing well for months although I’ve seen the odd ones like you say. He sounded like he had a sore throat and I checked and he has tonsillitis! I took him straight to doctors and the tics just came thick and fast! Have you ever considered PANDAS? I’m seriously looking into this now as my son did test positive for strep but the paediatrician didn’t do anything about it back in September and the tics did wane.  Now he’s got a throat infection again and sudden onset of tics and huge anxiety. He had full on panic attack yesterday and today. Just so distressing to see and more importantly distressing for him! I’m waiting for the throat swab to come back re strep from yesterday’s test but if it does test positive then I’m really thinking it could be PANDAS. I have an autoimmune disorder myself so it’s def something to consider. So hard to just try be ‘normal’ and calm for them when there’s so much worry. Suppose we have to just take each day at a time and investigate every avenue. We have CBIT over here to. That gives me some comfort that there are things we can try and hope it does for you to. Our cases sound really similar. It was literally like reading my own thoughts reading those posts. Keep me updated of any progress or new findings and I’ll do the same for you! Take care and hope everything works out for you. Your in my prayers. Al

[ronime]

Hello Jonal,

I did consider PANDAS and his neurologist did some blood test and he said PANDAS was ruled out. Right now he's doing great. I do see some OCD in him. He has to have things his way and he hates messed. Everything has to be in threes. Like he can't just have one of something, it has to be 3. I have to say good night to him 3 times etc, etc. They say sometimes kids with tics have ocd issues as well.  Unfortunately it's a take it day by day thing . I pray a lot that's for sure. Hope the best for your little guy and will definitely keep you posted and please keep me posted as well!