Sudden Onset of Severe Complex Motor/Vocal Tics

[NurseMom21]

Hello,

I am a new member in desperation for answers.

My 12-year-old daughter started to stutter slightly, about 3-4 weeks ago. It wasn't bad, but I noticed it and asked her if she noticed it as well, which she did, but because it was somehow infrequent, I assumed maybe she had a lot on her mind. The stuttering literally went from just occasional words to 95% of all of her speech overnight.  I took her to the ER, where they performed a head CT and blood work; everything was normal and suggested a pediatric neurologist.

While waiting for the appointment with the neurologist, her stuttering continued at a high rate daily. Over Thanksgiving break with her dad, she started to notice a slight facial twitching.  Her dad and I both assumed that twitching could be expected with the increased stress from the stuttering. She came home the Saturday following Thanksgiving, she still was stuttering, but I never saw the facial twitching.  However, the following afternoon, she had uncontrollable jerking movements of her head/neck, shoulders, and arms. They were almost constant movements, with a max of 30-60 seconds between each movement.  They were causing her pain as well.

I again took her to an ER, this time to a pediatric ER of a well-known teaching hospital.  They admitted her for two nights, performed an EEG, MRI, and many blood tests - everything came back negative.

The neurologists' team told me because of the negative results, they think it is a "motor tic" that could go away on its own, or it could "wax and wean."

Since discharge four days ago, her tics have evolved and now include shouting with her upper body and facial movements.  She has slight tics in her legs when lying down, but they are far less severe.  Though she now complains of frequent leg pain, despite there not being many tics in her legs.  The tics are still just as constant as they were when we went to the ER; whenever she is awake, they occur about every 30-60 seconds and are exhausting.  Interestingly, her stuttering has almost completely gone away since the increase of her tics.  The only time I've heard a stutter is if she is trying to talk when a tic takes over.

The hospital has referred her for CBIT therapy that will not start until the end of the month.  They said it could help her manage her tics, which is hopeful - but in the meantime, I'm left feeling helpless as my daughter begs for me to make it stop.  To combat my helplessness, I have taken on the task of researching everything I can find about tic disorders, Tourette's, etc., which is how I found this page. I have already purchased the book on triggers and am waiting for it to be delivered next week.  I am very hopeful we will be able to identify her triggers.

In the meantime, I just wanted to share our story and maybe hear from others who may have been or are in a similar situation.

Does anyone else have a child with motor and vocal tics that came on as suddenly and severely as this?

Also pain?  I understand her having the pain in her upper body where her tics constantly throw her head/neck and arms around.  But her legs, where she only occasionally twitches at rest? And her legs are where she has the most pain, often rating it an eight on a pain scale.

I am sorry for such a long post; I am just so overwhelmed with all of this; I am still not 100% sure that this is a transient motor tic, but I don't know what else it could be.  I am sure everyone else can relate to my frustration and worry; I am convinced there is no worse torture than to watch your child suffer like this.

Any feedback, thoughts or ideas would be GREATLY appreciated!  

Thank you!

-Ashley

[Mommymom]

Hi @NurseMom21,

 I am sorry to hear about your daughter. It is unfortunate how tics take over life all of a sudden. I am in the same boat with my 8 year old daughter. Vocal and motor tics started all of a sudden. I am still clueless looking for possible interventions.

My daughter’s pediatric neurologist asked us to wait and watch. They claim the tics to wax and wane overtime. Looks like puberty plays a key role. I wish there is more research and information available. 
 

stay strong and keep your daughter’s self esteem high. It’s very hard emotionally on the family. I wish you and your daughter the best. 

[Sheila]

Hi to NurseMom21, I'm so sorry to read all that you and your family are going through. Yes, others have experienced rapid development of tics, and there can be different causes.  What you have described does not sound like a typical transient tic. 

When major tics (and/or behavioral or emotional change) start up quickly, it it can often be due to an infection or a significant environmental exposure that is causing inflammation in the brain.

When you mention testing that was done, did they indicate if results ruled out PANDAS or another type of infection?

I would suggest looking further for the cause(s) as soon as possible. I would like you to please contact me through the Latitudes.org website which is https://latitudes.org/contact-us/  so I can learn more and we can discuss options. (I'm not a doctor, just to brainstorm with you for next steps.)

Wishing you all the very best, Sheila 

[Momxiety]

I am in the same boat... My 9 year old son has suddenly developed motor tics.  Neck movement - as well as others. 

He also appears to have vocal tics - which he is trying to manage into the current scenario around him.

He seems completely hyper active and needs to be constantly busy. I can tell that whatever is going on is keeping his mind so busy that at times he has trouble comprehending a simple sentence - as if he hasn't heard me.

He is having trouble falling asleep.

It just seems so sudden - and therefore hard to comprehend.

Paed has seen him and again it's a wait and see approach with habit reversal therapy.  Has anyone had success with habit reversal therapy?

In the meantime I am using Tic Tamer and Rescue Remedy - we start Reflexology and Esquetarian Therapy this week too.

Also ensuring exercise.

But truthfully it's awful to watch; and even more difficult to comprehend that this is his life now.  It seems to me that it is exhausting him.

 

 

[WorriedMum]

It is awful when your child starts ticcing. You feel so hopeless. I think I was on the verge of depression in the early days (July 2019).  When my daughter starting ticcing, it was like she suddenly developed ADHD at the same time and was bouncing off the walls. Thankfully after a month or two the hyper active behaviour stopped. My daughter has since been diagnosed with chronic tic disorder and anxiety. 

I have spent a fortune on various treatments in the hope of a cure. She started GABA last week (read about it on here) and her tics are pretty much gone. I know it could be a wane period but we haven’t had a wane period in 6 months. She said she feels calmer.

Things we have tried:

Accupuncture - didn’t work

Massage - didn’t help tics but helped her to sleep

CBT - helped a bit with anxiety

Removing gluten from her diet - didn’t work

Removing dairy from her diet - didn’t work. 

Essential oils - didn’t help 

Magnesium - still give it but unsure if it helps

taurine - didn’t work

l-carnitine - don’t work

vitamin b complex - still give it but unsure if it helps

psychiatrist sessions - don’t help 

CBD oil - I do think it works. Have stopped this with the GABA.

Melatonin - works for sleep but only give it if the tics are bad at night. 

GABA - so far so good

 

[Outofthefryingpan]

We have had exactly the same issue with our son, age 13.  Around two weeks ago, some mild OCD type behaviours suddenly exploded into violent motor and vocal tics. He shakes and jumps and tenses himself up and screams at the top of his voice. We're pretty sure the neighbours must think we're maltreating him! 

His motor and vocal tics have been at their worst on waking in the morning and going to sleep at night, with three or four severe episodes over the space of half an hour each time. These have worried and upset him and us a lot. They were so bad he would practically go from lying to standing in one jolt and it was hard to hold him in case he hurt himself. It has been a very harrowing and fractious time.

We already see a Functional Medicine Practitioner and had started to do some investigation related to the OCD type behaviour. 

Vitamin and mineral levels - this was an update/check as he already takes supplements

Lots of exercise - seems to lessen the frequency

Pyroluria test (his dad has it) - this was positive

a food intolerance test - We eliminated gluten and offending foodstuffs and changed to A2 dairy

We took away his electronic devices for a week - that was a tough one!

We are having some old windows replaced - so thought to look into mold sensitivity

We use essential oils and are looking for a weighted blanket

Epsom salt baths - Relax him but don't eliminate the tics

There are lots of other avenues that we haven't yet tackled, so there's a long way to go.  There's also the PANDAS / Strep idea.

We do a lot to nourish the gut and immune system already - so it's like a kick in the teeth that this has come about all of a sudden!

We are working our way through Sheila's book. So glad to have found this site/forum!

 

 

[Sheila]

Hi Ourofthefryingpan--Welcome to the forums. I'm sorry to read about the very difficult time you are having with your son. I can only imagine how distressing this major increase in tic severity has been. Is your current doctor going to consider PANS soon? That is something that is best caught as soon as possible, if it is the case. 

Has your son had an infection of any kind that you are aware of?

In addition to whatever underlying imbalances may be occurring that the doctor could uncover, it might be useful to think through what else might be going on. Please drop me a note through our contact page if you would like to brainstorm.  https://latitudes.org/contact-us/

Wishing you all the best! Sheila 

 

[LLYNCH]

On 12/5/2020 at 12:35 PM, NurseMom21 said:

Hello,

I am a new member in desperation for answers.

My 12-year-old daughter started to stutter slightly, about 3-4 weeks ago. It wasn't bad, but I noticed it and asked her if she noticed it as well, which she did, but because it was somehow infrequent, I assumed maybe she had a lot on her mind. The stuttering literally went from just occasional words to 95% of all of her speech overnight.  I took her to the ER, where they performed a head CT and blood work; everything was normal and suggested a pediatric neurologist.

While waiting for the appointment with the neurologist, her stuttering continued at a high rate daily. Over Thanksgiving break with her dad, she started to notice a slight facial twitching.  Her dad and I both assumed that twitching could be expected with the increased stress from the stuttering. She came home the Saturday following Thanksgiving, she still was stuttering, but I never saw the facial twitching.  However, the following afternoon, she had uncontrollable jerking movements of her head/neck, shoulders, and arms. They were almost constant movements, with a max of 30-60 seconds between each movement.  They were causing her pain as well.

I again took her to an ER, this time to a pediatric ER of a well-known teaching hospital.  They admitted her for two nights, performed an EEG, MRI, and many blood tests - everything came back negative.

The neurologists' team told me because of the negative results, they think it is a "motor tic" that could go away on its own, or it could "wax and wean."

Since discharge four days ago, her tics have evolved and now include shouting with her upper body and facial movements.  She has slight tics in her legs when lying down, but they are far less severe.  Though she now complains of frequent leg pain, despite there not being many tics in her legs.  The tics are still just as constant as they were when we went to the ER; whenever she is awake, they occur about every 30-60 seconds and are exhausting.  Interestingly, her stuttering has almost completely gone away since the increase of her tics.  The only time I've heard a stutter is if she is trying to talk when a tic takes over.

The hospital has referred her for CBIT therapy that will not start until the end of the month.  They said it could help her manage her tics, which is hopeful - but in the meantime, I'm left feeling helpless as my daughter begs for me to make it stop.  To combat my helplessness, I have taken on the task of researching everything I can find about tic disorders, Tourette's, etc., which is how I found this page. I have already purchased the book on triggers and am waiting for it to be delivered next week.  I am very hopeful we will be able to identify her triggers.

In the meantime, I just wanted to share our story and maybe hear from others who may have been or are in a similar situation.

Does anyone else have a child with motor and vocal tics that came on as suddenly and severely as this?

Also pain?  I understand her having the pain in her upper body where her tics constantly throw her head/neck and arms around.  But her legs, where she only occasionally twitches at rest? And her legs are where she has the most pain, often rating it an eight on a pain scale.

I am sorry for such a long post; I am just so overwhelmed with all of this; I am still not 100% sure that this is a transient motor tic, but I don't know what else it could be.  I am sure everyone else can relate to my frustration and worry; I am convinced there is no worse torture than to watch your child suffer like this.

Any feedback, thoughts or ideas would be GREATLY appreciated!  

Thank you!

-Ashley

This is all so hard. I have four children 19-11 and I have never experienced anything more difficult than what I am going thru with my sons tics, he is 11. And we have had some whoppers and auto immune issues. For my son, he broke his wrist playing baseball and I began to notice slight movements in his hand and I thought it was the cast. Cast came off and I still noticed. Then it was facial grimacing when he would get off the bus. Took to any local neuro and he said those are tics.. ignore and they will go away. Well lockdown happened and It was mind blowing. We have tried three neurologist.  We tried three meds, all a complete disaster. We did CBIT therapy. Wasn't terrible helpful, I did functional testing, only thing we gained from that was take magnesium, we did MRI and his brain is fine, I have tried weighted blankets, CBD, essential oils, chiropractor, weekly therapeutic massages. Magnesium cream for his feet at bedtime. I am currently looking for an integrative doctor but my son has Ulcerative Colitis so I need to find someone who is careful about what I give him. I am at a total loss and just spinning my wheels. I want to know why/how they started, I am unable to accept "your son has tourettes and there is no cure". We have full body complex tics with some vocal tics (silly noises not cursing). The tics come and go (are present more than they are not) and come back in all different ways. Right now he has this terrible arm slamming tic, its horrible. Vocal Tic at bay at the moment (watch, I probably just jinxed myself). Kids at school notice. Im am sad for him, big time. and when I have had days where he is home (we recently had a snow storm) and I see the tics 24/7, I end up having a good old meltdown when he goes to bed. I think to myself.. there has to be a way to help him... There just has to be!! 

[Chemar]

Welcome to the Forum LLYNCH though sorry to see what brings you here.

I do want to encourage you not to lose hope! My son's TS tics were very severe when he was 10yo but we found, after going down a number of conventional medication rabbit holes, that there were ways to help him greatly through a more natural approach of nutritional and environmental remedies that reduced the things that were triggering his tics.

Do take a look at our pinned threads as there is a lot of helpful info there, especially in the excellent resources of Sheila's 2 books on Natural Treatments and identifying tic triggers, as well as in the Useful info thread.

It is very possible that something related to your son's injury and subsequent treatment may have been a catalyst in the onset of tics. Our bodies are such intricate systems that when something goes awry in one area, it can impact others!

I hope you find answers, and that things will soon improve for your son.

[Outofthefryingpan]

Hello Everyone! NurseMom21, Mommymom, Momxiety, WorriedMum, Sheila,  LLYNCH & Chemar.

Thank you all for sharing your experiences here. Your posts help us to brainstorm here in our family and we are so sorry that there are so many children and parents struggling out there with these awful symptoms. I hope that some of you will have had better days since you posted or have found some things that are useful to get some relief.

I just saw that I posted 20 days ago. Re-reading that, it's difficult to see how things could have got much worse than that but we have just been through over the last five days and our nerves were left in tatters. My real reason for posting is to share what we discovered. My child is not better but the pressure cooker intensity in our household has diminished from an 11/10 to a 6.

SUGAR, WHEAT AND MILK.

SUGAR - We decided to keep a daily diary of everything. Weather, food, hours of sleep, hydration, stools, behaviour mood. We logged all meals and snacks on one page and on the opposite page noted any changes in behaviour. On one day we were totally baffled. I had home-cooked everything organic, from scratch. There had been no arguments in the house, no wheat, sugar or milk consumed and no screen time. That evening, my son had the most terrifying rage. Screaming himself hoarse, crying for help, hyperventilating, panicking, wide-eyed, breath-holding, red in the face, muscles tensed. It lasted in waves for an hour. We would have almost have called emergency services except for the fact that in our heart of hearts we knew that they would only administer medication or some form of sedation to mask the problem. 

Once my child had recovered...and he did. He admitted that he had found some long-forgotten-about secreted toffees and gummy bears [milk, possibly wheat, colourings, preservatives, & SUGAR] and couldn't help himself. Impulse control is not his forte!

There were episodes like this for five days. We're still alive...just our nerves are in tatters.

WHEAT - I looked back through the diary comparing foods and 'episodes' and looked for likely culprits. My child and his dad are gluten-free. One was after eating some black pudding (sorry vegetarians!). He ate it because his dad ate it, and dad had changed the brand. On the label WHEAT. In the bin.

MILK - We had not flagged milk as a problem. We had switched to A2 Guernsey milk. One night, I watched my son down a mug of warm milk before bedtime. The result? After half an hour the same uncontrollable fit, rage, panick, screaming.

Some have mentioned on here that these are not a trigger. Every child is different. My son never had any reaction to any of these until Christmas time this year.

I suppose my nugget of wisdom here (Thank you Sheila, for your book) is that a diary helps. It is laborious and tedious and make sure the person with the neatest handwriting fills it in so that you can read it back! But it does help.

Tics we are left with are ramming fingers up nose, screwing up eyes and banging his head with his fist and repeating things very fast over and over like a tongue-twister (homeopath Zoom later) but compared to the sheer torture of the [discovered] food triggers, it is manageable.

 

Much love to you all xxx

[Sheila]

Hi OutoftheFryingPan -- First, my sympathies for the major symptoms you have been dealing with. But also a big pat on the back for your dedicated efforts that have revealed some key food reactions in your son. As you say, it's not easy to track details but it can be very valuable. (Loved the comment on neat handwriting!)

It's also great that your son admitted to the toffee and gummy bears! Otherwise, the mystery can make us moms and dads so disheartened and worried. I used to feel sick to my stomach when I couldn't figure out what was going on, and so relieved when the answer was revealed. It's also a chance for children to learn from their experience, though no one would wish those severe reactions on anyone.  Your milk observation is excellent also. 

One note-- in addition to the sugar connection you saw with his "sneak" foods, please also keep an eye on the colourings and preservatives as mentioned with the the gummy bears. It sounds like you are already doing an amazing job with monitoring and preparing food, so he may not encounter them often. But a little food coloring or preservative in even non-sugary snacks like in chips/crisps can cause similar extreme behavior in hyper-sensitive kids.  It would seem your son falls into the category of "exquisitely sensitive." That does not preclude his healing. 

I just looked the black pudding up on the computer. As a vegetarian I was not familiar with it. (No comment! Ha. I know it is popular in the UK and many other areas). 

I hope your session with the homeopath goes well. One area to target is the health of the gut in general, to hopefully reduce food reactions. 

We will watch for more news when you get a chance.  Thank you again for your posting --   and for your love, which we return to you! 💗 

[NurseMom21]

Hello Again Everyone!

I'm sorry I have not been responsive to reply posts, but I have read them all, and I am so sorry for everyone else going through this.

Someone asked I provide an update, so here it goes...(sorry this is going to be long, but please read and check out the video at the end of her tic storm from last night)

Since my last post, my daughter's tics have been like a revolving door. The only consistent aspect has been that they have been present daily from the time she wakes up until she goes to sleep. They occur at a rate of several complex motor and vocal tics per minute. ALL. DAY. LONG!

Up until February 14th, we had kind of settled into this new normal. Her tics were annoying to her, but the shock value had decreased a bit.  On the 14th, everything changed. Her tics completely took over and caused bizarre behavior. She was going all through the house in a manic state, attempting to eat paper towels; she was trying to put non-food items into my microwave and turn it on, spitting on everything and everyone, climbing on tables, throwing food and objects. COMPLETELY out of control!! Her vocal tics also changed to full sentences, and she would even argue with herself in the tic; for example, she kept saying, "I have a bomb," "no you don't," "yes, I do." She also was vocalizing that she saw things, like a ghost or animals. This tic storm lasted a couple of hours. HOWEVER, she remained coherent during the whole time, and between tics, she could talk normally and respond to any questions.  She said that she wasn't really seeing or hearing anything, but the tics were making her say those things as though she were.

I took her back to the ER, and they admitted her, did blood work, a psych evaluation, and saw neurologists. They are still calling this a "transient tic disorder." They started her on risperidone 0.25 mg twice daily because we have already tried and failed guanfacine and Strattera. At first, it seemed the risperidone was calming her down some. But the day after we were discharged, her tics were just as frequent as they were before, minus the odd behavior.

Last night, two days after discharge, she went into another severe tic attack.  She was in her bedroom with her brothers playing, or so I thought until my son came out telling me she was stuck in a tic and was holding them hostage in the bedroom.  I went into the bedroom to find her pinning her older brother up against a wall preventing him from leaving.  It seemed like kids playing at first glance, but her responses were abnormal. I had to pry her hands off her brother and take her out of the room to sit down. She was running through many tics very rapidly and was incoherent.  She could not respond to me or follow my verbal instructions.  It was like the tics were holding her hostage. I took a short video of it and called her on-call neurologist. He asked if she responds to water being splashed on her, and I hadn't tried that, so I did, and it was like waking her up from a coma; she immediately broke out of it and became responsive again. The attack lasted at least 45 minutes. She was still rapidly tic'ing, but she could respond to me and was coherent. The doctor said he didn't think we needed to go to the ER and that she was just "stuck" in her tics...

I don't know. Certainly, this isn't "expected" with tics. From my research, I have found many children have "tic attacks," but I have yet to find any that have an altered level of consciousness while having them. And I have yet to find anyone who has them as severe as she does on a daily basis.

After months of waiting, we finally have an appointment with a PANDAS neuropsychiatrist next week. I am anxious to hear what they say.

If anyone is interested, I have uploaded the video from last night to YouTube. Feel free to share it or comment, I am desperate for help and answers!!

 

[MLee]

.

Edited February 18, 2021 by MLee

[Sheila]

Nursemom21, its definitely good that you are seeing a PANDAS neuropsychiatrist for these types of symptoms. Please let us know what you find out. I know everyone will be interested to know. It's too bad you had to wait so long, but hopefully new answers will be coming. Sheila  

[Mommymom]

@NurseMom21stay strong, your daughter needs you more than ever. I pray to god that you get the help and support to help your daughter get better. Please keep us posted on PANS/PANDAS result.