Acute Onset of tics

[lpop]

Hello. This is my first post- been lurking and reading as much as I can. I have a wonderful ,almost 6 year old ( birthday in 2 sleeps!!) daughter who on Oct4 woke up to a constant verbal tic (hiccup noise) She had been ill for 4- 5 weeks with what I would say was a virus. -cold cough runny nose etc. After a few days we took her to the doctor and she confirmed this was a tic- but prescribed antibiotics in case this was strep induced (did a swab which later was found to be negative) In about a day, her personality changed . The only way I can describe it was that my healthy daughter turned into a child afflicted with -tourettes, adhd, anxiety and fears, autistic , sleep disruptions/night terrors, and memory loss . She acquired chorea type movements (according to the neuro) , facial grimacing and 3 other verbal tics within a few days...Now this does clinically fit the bill for Pandas or Pans. But in our location, this has never been diagnosed due to lack of education- all children diagnosed have been diagnosed out of province/state. Now my GP did not diagnose her with Pandas or Pans but suspected it- referred her to a neuro who suspected Pans (because strep titre and swab were both negative) but hasn't diagnosed it either. We have been on antibiotics (now augmenting) for 3 weeks. We have seen dramatic improvement in new anxiety, cognition and sleeping. Tics have decreased although we sometimes get a bad evening depending on her fatigue. She is fatigued a lot really- now asking for naps (she hasn't napped in 3 years) and going to bed an hour before normal bedtimes.

Now we are in a wait and see type of situation. We are on antibiotics for another 4 weeks and then hopefully the tics will lessen. Does anyone have anything they can tell me or advise me? Is there a good chance this could turn out ok? Will she tic forever? I asked the neuro straight out if this is Tourettes or pans and she couldn't answer = which I totally get, but so frustrating. She did say that typically tourettes patients have family history (we have none) and the child doesn't present so acutely either with the other symptoms . I feel guilty to admit this, but her vocal tics are annoying and embarrassing at times. I try my best to ignore them but it breaks my heart to see her have to pause and struggle to complete a paperwork task she normally completed with no issue beforehand. And this all came up so acutely ,which I almost feel I have post traumatic stress disorder over- seriously!! If this was a gradual thing, I think we could have been more prepared- but it was sudden, and we felt we 'lost' our daughter. I am grieving this personally and need some personal advise as well please !! Thanks

[Chemar]

bumping up this new member post so others can see and respond

[nicklemama]

You've just answered the question yourself in your post. Sudden onset, gets better with abx, a plethora of symptoms all at once. That equals PANS.

[rowingmom]

Ticcing was one of DD's first physical symptoms. It appeared within 1 month of her MMR booster and an unidentified insect bite with atypical non-EM rash.

[chubbermommy]

Ticcing was DS' first symptom and remains pretty much his only symptom. He started suddenly also, and a throat swab was positive for strep. Later on, we found out he has Lyme, which, in hindsight, I believe caused the whole immune dysfunction and the strep was just the straw that broke the camel's back.

 

Just because a throat swab is negative does not mean there's no strep. Strep can hide out in different parts of the body. And if it's not strep, it could be some other trigger (Lyme and its co-infections, mycoplasma, etc).

[tj21]

We had sudden onset of similar vocal tic as well (a high pitched "yelping") that went on for 10 hours non-stop, maybe at age 9 (I've forgotten!). I do think ds15 had been sick preceding that, but never tested for strep. Unfortunately, it has taken us til this year to get PANS treatment (long story for another day). ds15's Moleculera "Cunningham" panel had elevated cam Kinase auto-antibodies, which are indicated in tics, and not always elevated in Tourettes.

 

Although ds15 has a Tourettes dx due to other transient minor tics, like eye blinking and lip-smacking, the sudden vocal onset, and later severe neck/head jerking, were alarming. Only other known "tics" case in family is a first cousin of mine (and only eye blinking).

 

Anyway, we started abx treatment in March 2014 and most of ds15's tics are almost absent except during stress (or fatigue, as you mention). So, for us, PANS treatment is helping a great deal, but b/c we started so late we have a long road ahead. It sounds like you already have some success b/c you started abx treatment right away.

Edited October 29, 2014 by tj21

[Missmom]

I hate to say it, but it truly is a trial and error, and wait and see game. At least you were given antibiotics and she has improved. That is a great sign. For many of us tics will come and go and change, but eventually subside. They are usually the first symptom parents notice because they are so obvious. Other psychiatric symptoms are often explained away or excused early on as being mood swings, or tiredness, or teenage hormones, or terrible twos, etc..... Tics are so evident that when they start suddenly you know something is wrong. I don't really have much to add, just wanted to say I hope you find answers.

[qannie47]

It is the dramatic onset and the improvement with abx that is your big eye opener. My ds first "big" Pandas flare occurred at the same age, typical, and it took 6 weeks to see him return back to his normal baseline.

 

If this is Pandas, Pans, it is likely that you will see that return to baseline close to 100%. Unfortunately, future illness may very well trip off the very same set of symptoms. My experience, and from others in this forum will support that, as well as the well documented clinical research studies conducted.

 

You may be in for a long hall. Research this, there is much to be gleaned these days from the internet. NIMH, Dr. Koursevic. There is a more recent post that is titled, "who knew?" on this forum that will take you to a great collaborative website.

 

When my son was diagnosed, I hit Pandas with everything that was currently available to treat him. First abx, when that eventually fails, (and some believe abx eventually does), we then did IVIG (clinical research shows very positive outcomes), T/A, proflactic amox/clave 250 mg. daily. daily vitamin supplements that include magnesium, Vit D, Vit C, calcium (helps magnesium absorption and vise versa), and high does of curcumin/turmeric as a natural anti-inflammatory. Probiotics..it is important.

 

Find a doctor that your gut tells you that will help you. If they are not listening, move on quickly. Read, read, read. And then read some more. You will discover that you are your child's best advocate.

 

Consider a gluten, dairy free diet. This can help many children.

 

When you try supplements, try ONE at a time for 2 weeks before you decide about adverse side effects. Too many at one time will confuse results. If you get an odd reaction, still give it a little more time before you change...sometimes it takes the body a little time to adjust depending on methylation and you can see one step backwards before forwards...unless it is so over the top...

 

PTSD: Every parent in this forum has experienced this..it is almost a hallmark of the disorder and co-disorders....You will get through this. You will get stronger and more confident.

 

Best regards,

Qannie

[lpop]

Thank you all for your input. Of course I second guess every symptom….and of course I read into every little symptom..I have researched and read every internet article available I am sure. What is against us? If this truly is a PANS response our local medical community needs to kick it up a notch and get on treatments and research. We (other families and ourselves) have little local medical support. Our medical community lacks the education and drive to treat these kids. Nice to hear other people's thoughts and experiences.

[Lydiasmum]

Your post made me cry because I could have written it about my daughter. She is now 6 and I need to tell you she is doing well. The dreaded PANDAS (or maybe PANS) hit us when she was 4. She woke up one morning with all manner of crap going on. Tics were so bad she couldn't walk or use a pen properly and forget sitting to watch her favourite programme or eat a meal - she just squirmed around constantly in a state of unrest. She also blurted random meaningless stuff and constantly shrugged her shoulders and grimaced her face. She was so anxious she wouldn't leave a room on her own and all of this started after more than a year of constant 'viral' sore throats and other illnesses. Unfortunately, it also coincided with beginning school so everyone wanted to blame it on that. Maybe it came about because of severe anxiety? No, I think not - I knew it was more and set about my mission to find some answers. The only one I got was a probable tourettes diagnosis and I started to resign myself to the fact that my precious girl was in for a lifetime of bullying, low self-esteem and frustration. 3 months after initial crisis things calmed down on their own - only to resurface 3 months after that. She got a sore throat covered in red spots so at the doctors I requested a throat swab. Group A strep was confirmed. This didn't stop the GP treating me like I was mad and should stop surfing the net and get a life. I had seen these symptoms before so this was probably strep throat number 5 by now and this was the only one that got the needed antibiotics. With lots of persuasion (and death by information overload!) DD's ped. agreed to prescribe antibiotics and she stays on erythromycin daily in an attempt to prevent further strep episodes - she has been doing this for over a year and I admit I am scared to stop them.

 

Fast forward 2 years and I am glad to say DD is in a much better place. Year 2012 was awful, 2013 better and 2014 better again - she is happy, social and doing well academically. We do see minor stuff with illnesses - but it is not that obvious to others that she may be blinking her eyes too much, or she is a bit more hyper and crazy than normal, or that noises are bugging her again. I notice but I am her mum and I still dread a relapse. So far so good though, in a few days the minor stuff takes a hike and she resorts back to her new baseline of pretty good (95%) I too have post traumatic stress so I can bet this is what you are dealing with. It is awful and I totally understand what you are going through. I want reassurance that the worst is behind us, never to return - but no one can give me this. We are getting back to normal as a family - this is our new normal, it is different but it isn't desperate any more. We all enjoy things again.

 

I wanted to post this because your story is nearly identical. You are where I was two years ago. In time, you will not be there and you too will be telling your story to someone who finds themselves at the beginning of the nightmare. Things do get better with time. Good luck - I am sending lots of healing prayers your way.

 

Take care.

[WorriedDADNMOM]

Yep, textbook, carbon copy....you name it........ Pandas/Pans!!!!!!

 

I would say your in a good place. Your here, your docs giving abx on board.

 

I would just ask where are you located??? Got a Pandas Literate doc???

 

PM me if your in the midwest and want a great doc in Ohio.

[lpop]

Thanks everyone for your kind words and openness. It is very clear to me that yes, this is pandas. Lots has happened since I last posted. Some good some bad. My 6 year old little girl has been slowly doing better after 5 weeks of antibiotics. Congnition better, moods better, focus great, sleeping great (still needing uncharacteristic naps) , anxieties nil, tics about 60-70% reduced. We are feeling great about her progress…slow but coming.

Our 8 year old son had some acute concerning behavioural changes we were worried about. Depression and acute behavioural changes in school. Worried people don't like him , scared to go to bed,lack of focus and trouble remembering math, and an eye tic. All in one week. Normally a straight A perfectionist child who is well mannered and happy/excited about life. We wondered if it was PTSD from our daughter's illness and dysfunction from home. Didn't put it all together at first…was making excuses for every symptom…..well, low and behold a sore throat appeared….with a fever and he has strep infection with all this. So, looks like our oldest is maybe under suspicion for Pandas. We have him on antibiotics and are continuing with the same doctor to get more antibiotics.

unfortunately, where we live we are extremely behind in treatment and diagnosing pandas. This is scary for us knowing this. And our kids have not been officially diagnosed…crazy. But the docs all suspect that this is what it is. Sigh.