Motor/Vocal tics in kids

[momofone23]

HI all,

 

I've seen a few references in the Lyme forum about motor and vocal tics and wanted to ask those of you whose kids have both Lyme and TS how it's possible to distinguish between the two as potential causes for the tics. My son (15) was diagnosed with chronic Lyme about 6 months ago, however he had absolutely NO symptoms whatsoever to indicate Lyme with the exception of motor and vocal tics from TS. His case is somewhat complicated because he only got diagnosed with TS about a year ago, however it's likely he's had it since age 2 when he began with an eye-blinking tic. Over the years there were no other indications pointing to TS, but of course had I known more about TS at the time I would have put 2+2 together much sooner. He's always had learning disabilities and executive functioning issues, but aside from that nothing unusual.

 

Last August he went through a rapid onset of puberty and at the same time his eye-blinking tic (since age 2) turned into moderate to severe motor and vocal tics almost overnight. The eye blinking tic (prior to this) had waxed and waned and there would be many months where we wouldn't see it at al or very little. After his tics went crazy during puberty, although we were pretty sure it was TS we also wanted to rule out other possibilities. This is when we discovered he had chronic Lyme, however we believe he contracted the Lyme about 6 years ago when he was bitten, it's pretty doubtful he had it since age 2 when the eye-blinking tic first began.

 

He tested positive, but it wasn't a really strong positive and it was only 2 bands that showed positive. He's been on abx for about 6 months now, rotating between a few different ones. Anyway, back to my initial question.......how do you determine whether it's the Lyme or TS (or both) that are causing the tics to persist in a situation such as this? And are there some tics that are more common with Lyme vs TS or visa-versa? My son's tics seem to morph into new ones roughly every month or so (give or take). They've gone from seizure-like tics with dystonic posturing that were very intense to a tic "routine" and now to what is a high pitched screeching tic that seems to be mainly vocal not physical.

 

Would love to hear from anyone who might have experience with a similar situation.

 

Thanks much!

Karen

[sf_mom]

Karen: My son's predominate symptoms at sudden on-set were TICs at 5 1/2 years old. Rapid eye blinking was one of his TICs. He has congenital Lyme. TICS are mostly resolved and he is currently 7 1/2 years old. If it has truly been Lyme Disease or chronic infection for your son all along TICs should resolve with treatment. It is very possible he has had chronic infection since 2 and his body has been able to manage symptoms. Our experience has been the first symptom/TIC to crop up is the last to resolve.

 

Good luck with treatment. Wendy

[lismom]

I'll give you my experience with my now 14yr old son. Up until he was six years old he had no tics. He started having eye tics and I discovered he had allergies. He went on shots and they went away completely. He was tic free for five years until 11 years old when he got sick. I ended up thinking he had PANDAS. After 2 years of not healing, he was eventually diaganosed with lyme with only 2 bands. I have seen the tics come and go. Get severe and stay mild. For him the potential for tics may be a genetic predisposition. I believe though, when his body is well, the tics will leave.

 

Teens that have lyme also have other things their bodies are dealing with as well. Puberty adds fuel to the already burning flame of lyme.

[NancyD]

My DD had really severe tics (both vocal and motor) going into puberty. They have been gone now completely for over two years.

[momofone23]

Thanks everyone, it really helps a lot to hear from others dealing with similar situations.

 

Nancy D, how old is your daughter now? It's great to hear that her tics are completely gone. Was she diagnosed with Lyme and TS, or what was her diagnosis and how long did her tics last?

 

Lismom, I totally agree that if there's anything "hiding" or lurking in a child's body puberty will certainly bring it out and add fuel to the fire that may not have been visible beforehand. What type of treatment is your son on for Lyme?

 

Wendy, could you tell me a little about what your son's treatment was for the Lyme? It is possible, as you said, that my son had chronic infection since 2 but his body was able to handle it until puberty, however his eye-blinking began before we moved back east, we were previously living in Southern California in an area where tics are not at all an issue, and I had been living there all of my life as well.

 

We believe that he contracted Lyme here on the east coast (Northern Virginia) about 6 years ago when he was bitten in the head by a dog tic. At the time I knew of Lyme, but was under the widespread misconception that only deer tics can transmit, not dog tics. We had taken him to the pediatrician to have the tic removed and even they had no clue about this either as they instructed us to put neosporin on the area and go on our merry way. Had i know otherwise at the time I would have asked to have him put immediately on antibiotics.

 

So, yes, anything is absolutely possible, but it seems from what has transpired that the most likely situation is he was infected 6 years ago when he was bitten and prior to that was exhibiting a mild and misdiagnosed case of TS with eye-blinking and for a short time throat clearing, until puberty hit, which then gave the Lyme an opportunity to surface and exacerbate his pre-existing mild tics/TS.

 

Some days I feel like his situation is all about TS and not Lyme, other days I think the opposite and many days I'm just not sure. We will continue with antibiotic treatment and I pray that eventually his tics will subside or at least become more benign and manageable.

 

Karen

[NancyD]

Karen,

 

My DD is 15 now. She was diagnosed with ASD at 2, colitis at 5, Bipolar and ADHD at 6, PANDAS at 7, lyme at 14, and Bartonella at 15. Didn't bother to get TS, OCD, or anxiety disorder diagnoses since I knew it was immune related by then. She is no longer on the autism spectrum, her colitis is completely healed, bipolar and ADHD were inaccurate diagnoses, and PANDAS is in remission. Tics, violent rages, sleep problems are gone. Anxiety and scruplulosity is still a problem -- I think it's tied to Bartonella. Now I believe her Lyme was congenital and may have induced the ASD, colitis, and PANDAS.

Nancy D, how old is your daughter now? It's great to hear that her tics are completely gone. Was she diagnosed with Lyme and TS, or what was her diagnosis and how long did her tics last

[sf_mom]

I think any combination of things could have kicked it off at 2: chronic infection/virus/vaccinations, etc.... Your son's body was able to handle 'it' until he was throttle again by Lyme. BUT, it also could have been underlying Lyme all along. Unfortunately, you will never know. We caught our twins Lyme early (2 1/2 they were put on antibiotics) due to older brothers diagnoses of PANDAS/Lyme. One twin did not have any TICs until we started treating for Lyme put picked up a shoulder shrug as a herxheimer response and has since resolved.

 

The TICS will come and go until the hyper immune response settles as each virus or infection is cleared. It takes time 'average child' two years to recover from LD. Wishing you the best with treatment.

 

-Wendy

[momofone23]

Thanks, Wendy. You make a good point about the possibilities at age 2. In fact, one thing I forgot to mention is that my son had chronic ear infections as an infant, which subsided by about age 2, which is when the eye-blinking tic began. Also, when he was around 3.5 years old, he developed what was later diagnosed as herpes on the bottom of his left foot. Thankfully, it has always remained only on his left foot, but he would get these terrible outbreaks with huge, painful blisters on the bottom of his foot. My gut feeling is that vaccines have a lot to do with the ear infections, and especially the herpes, since it's in the same family as chicken pox, which he was vaccinated for.

 

HIs doctor who's treating for Lyme also wants to run metal toxicity test to see if that's an issue. He feels that my son's tics should have subsided more by now with the antibiotics, but I think what you mentioned about the typical 2 year recovery time makes a lot of sense.

 

Karen

[MichaelTampa]

I was an adult TS diagnosis before finally realizing it was lyme. Primary physical tic would be eye blinking, with some muscle spasms, but mostly anxiety/shyness. My muscle spasms were sometimes muscles inside the body where the spasm could not be seen, but I could feel it. Sometimes it was on the surface where it could be seen. Don't know if these are the most common ones for distinguishing lyme-related tics versus other tics, but that is what I had.

 

From my memory there are a number of mothers on the board who didn't realize they had lyme until after realizing their child had lyme, so that does happen. If so, the lyme could be congenital. Since your child had eye blinking at such a young age, it is something to look at, in terms of the possibility that you passed this to him infection-wise. Fatigue, pain, and depression are some common symptoms, but there are so many.

 

As someone else suggested, it is also possible there was a non-lyme related issue that made him more susceptible to getting the lyme later. In this situation, it is possible good lyme treatment would resolve the pre-lyme symptoms anyway.

[momofone23]

Michael, thanks so much for sharing your story. Wow, that's pretty rare to have a TS diagnosis as an adult, but it makes sense that it ended up being Lyme. Like you said, I think it's hard to distinguish typical TS tics versus typical Lyme tics, although I'm not totally sure.

 

I've never had any symptoms to indicate Lyme or any such infection nor has my husband, so I doubt it's a congenital thing in our situation. If I had to make a guess I'd say that most likely his immune system was compromised by vaccines since he had chronic ear infections and then got the herpes on his one foot at age 3. He also never had any Lyme-like symptoms other than the motor and vocal tics, which surfaced last summer.

 

He's been on antibiotics for several months now, currently on his second rotation of using different meds. From what I've seen on the board and what I'm hearing from everyone responding to my post it definitely sounds like Lyme is playing a part in my son's TS, or who knows it may not be TS at all and be 100% Lyme, but only time will tell with continued treatment.

[sptcmom]

DS9 started with eye blinking at 22mos of age very mild and was passed off as stress due to a new preschool and his mild language delay. He was diagnosed with ASD at 24 mos and Aspergers at 33 mos. He's been up and down with picking up some mild tics. 2009- severe leg aches and pains, couldn't walk well, limping, couldn't sit down on floor or go upstairs, muscle atrophy in left leg etc. Did full neuro/ortho work up. Nothing except some bone marrow issue on MRI of pelvis. Picked up another mild motor tic. March 2010 Acute onset of PANDAS. Aug 2010 diagnosed as Bartonella. Oct 2010 diagnosed as Congenital lyme plus bartonella plus Pandas.

DS was born looking uncomfortable and irritated. Colic, GI issues, sensory issues. Extremely bright,but OCD, etc.

 

Researched back with my mom and we can trace it back to my maternal grandpa- a WWI merchant marine guy, came back home in 1920 with symptoms I can now relate to Bartonella Quintana or Trench fever. Mom lived in war zone, refugee tents in the woods for a year to escape death. I lost four of my five brothers to "idiopathic" or unknown reason Encephalitis like syndromes. All very bright professionals but with some OCD, quirks etc.

I grew up with mild OCD, dirt phobia, mild eye blinking tic, stuttering onset at age 4, rages, anger, relapsing and remitting till age 12 at puberty and then it all seemed to resolve my mom says.

I have no childhood memories that I can recall. The first ones I can truly remember are at age 11!!After IV abx for internal strep in my teens, I actually had photographic memory all thru college until 5 to 7 years ago when a near fatal car accident with brain injury reactivated my dormant Lyme and I was back to brain fog incorrectly diagnosed as extented concussion syndrome! LOL!! thats a hysterical laugh.

 

My DS was diagnosed by his idiot allergist as "mystery asthma" after 4 months of chronic cough and put on heavy nebulizer steroids for 1.5 years!! That screwed him so much I can't even imagine. Our PANDAS doc tested for Mycoplasma pneumoniae and it was positive. My poor kid had pneumonia for almost years diagnosed as asthma. We treated with Biaxin for 30 days and viola! no more asthma and no more nebulizer and its been over a year now.

 

Im a clinician and I wasn't Lyme cognizant then. Its a 180 for me now professionally and personally.

 

So, DS is third generation congenital Lyme and Co. I have Lyme, Bartonella and Babesia. I passed on Lyme to DH too.

 

All Aspergers, GI, sleep, seperation anxiety, etc have resolved for DS. We still respond with motor and vocal tics when exposed to strep, contact strep, viruses etc but its becoming less and less. We had him at 100% for a good 45 days AND off abx to give the body a break, before he recently got 5 loose teeth, a viral cold ad Strep a week later! UGH! All those end of year school parties, ll that sugar really did him in. But again reactive for only a few days now not months anymore. Im sure he'll be fine in a couple more days.

 

DH and I are undergoing treatment too.

Jodie