DS with severe motor tics

[chubbermommy]

Hi there. I'm new and seeking some support.

 

My 9 year old DS starting having severe motor tics about three weeks ago (around Sept 20). Very noticeable, full body, legs kicking, arms punching down, torso twitching. Started small but increased in duration (from 2 to 10 seconds long) and frequency (every minute - every few minutes). This morning was particularly bad; almost constant during breakfast. He gets better when he has some gross motor physical activity to concentrate on - soccer, running around with friends. But can't really sit still long enough to play piano now.

 

We took him to urgent care clinic, emergency room - who scheduled an EEG to be done in a few weeks. Our family doctor luckily had a colleague who had read about PANDAS and DS had a blood test and throat swab last Friday (Oct 11). Swab came back positive for strep (no other symptoms) and DS was put on amoxicillin the next day. So far, it's been 3.5 days since he started on it, but the tics are getting worse. I know it's early; he's on it for 10 days so we'll have to wait and see I suppose.

 

So that is our story so far. I'm so stressed I think I've ground my teeth down. Any insights? If the amoxicillin doesn't work, should I push for a stronger antibiotic?

 

He shows no signs of behavioural changes. We're totally downplaying the situation in front of him so he's not stressed.

 

Thanks for reading.

[beeskneesmommy]

Start with Augmentin, which is an Amox and Clavulanate combo. Sometimes it takes the whole 10 day run to see a decrease in symptoms. 30 days would be better. Blood draw for both Strep and Mycoplasma as well as Lyme to start. More sensitive tests should come later and for goodness sake, get an appt. set today with a specialist. They have very long wait lists. It is tempting, when the issue resolves, to move away from it and cancel the plan to get hooked up with a specialist. Don't do it! Having the people you need in your back pocket for the future is a beautiful thing if you find yourself in an emergent situation down the road. Where are you located? Most of us travel for docs but here is a list of physicians who treat:

 

http://pandasnetwork.org/resources/providers/provider-list/

 

This site also has an international list and other resources and info. It is one that I recommend often.

[Dedee]

The amoxicillin probably isn't strong enough and definitely isn't for long enough. An average of 30 days is what he needs to get things calmed down. I agree with the Augmentin or Biaxin. You need to immediately get an appointment with a PANDAS specialist. Even if your physician says he has read about or seen PANDAS he still doesn't know how to treat it (obviously). Also, try some ibuprofen to see if it helps with symptoms. Sometimes it will help decrease inflammation and give temporary relief. Educate yourself and read as much as you can about PANDAS. Do not depend on your physician to do the right thing for treatment. You will be disappointed.

 

Dedee

[chubbermommy]

In speaking with a nurse friend of mine who started reading about PANDAS after seeing my son and hearing my thoughts about it, she told me to look into Sydenham's chorea, which I had also come across but not really looked at. The symptoms are very similar. My son has the jerking motions that are described. So now I want to ask my dr to also test for whatever to look for for Sydenham's.

 

I've looked at the pandasnetwork website but unfortunately, when you click on the international doctors, it says 'not found' or something.

 

We live in Ottawa, Canada.

 

Anyone have experience with Sydenham's vs PANDAS?

[chubbermommy]

Also, I wanted to ask, why mycoplasma and lyme? I don't think he has been exposed to lyme. Doesn't that come from ticks?

[rowingmom]

Welcome to the forum!

 

We are from the Niagara Region of Ontario and when I found this forum and noticed several parents suggesting lyme and coinfections I thought, No Way! It was January, we had never had a EM rash. But, Yes Way. Our daughter fit the symptom list :

 

http://www.latitudes.org/forums/index.php?showtopic=10804

 

Dr C's (a lyme literate pediatrician) presentation is listed at the bottom of the thread. Please open it and read it if your son has any other symptoms - ADHD, sensory processing disorders etc. We don't use full doctors name here because the doctors that treat our children are often persecuted by the IDSA and CDC for their treatment protocols.

 

Lyme is transferred everywhere by songbirds, white-footed mice and deer. If you have any of these animals in your vacinity, lyme is a possiblity. Did you see The Nature of Things last week? It was on Lyme in Canada and discussed some of the conflicting attitudes you are likely to encounter. Lyme is now endemic in the St. Lawerence River area. I grew up there, a beautiful place.

 

Our Ped Psychologist told me that IVIG is not allowed in Ontario unless the patient is incapacitated. We could not afford to pay out of pocket for it in the US, however we did find an ILADS (International Lyme and Associated Diseases Society) trained LLMD (Lyme Literate Medical Doctor) in Buffalo who believed in PANDAS/PANS and told me it was caused, in our case, by a bartonella infection, which can be one of the coinfections of lyme, which can also be contracted through contact with infected cats, fleas, tics and lice (some doctors even think sand flies and mosquitos).

 

She treated our daughter for two years and we have now weaned from abx, with very good results. All of her ADHD, Tourettes and Asperger's symptoms have resolved. She still has some low level bartonella bone pain (upon extreme exertion), but is otherwise functioning fully.

 

Please read my signature line for more information on our journey.

 

If you have any questions about finding treatment in Canada, please PM me.

[lovemylittleguy]

Chubbermommy,

 

Just wanted to let you know there is a PANDAS Canada page on Facebook. It is small, but there are some Ontario moms here that may be able to offer you some leads to some help. I also have been an avid reader of rowingmom's posts for a long time and would encourage you to make use of her experience.

 

Janice

[rowingmom]

Swab came back positive for strep (no other symptoms) and DS was put on amoxicillin the next day. So far, it's been 3.5 days since he started on it, but the tics are getting worse. I know it's early; he's on it for 10 days so we'll have to wait and see I suppose.

 

 

@ lovemylittleguy -

 

What you are seeing may be a herxheimer reaction. It is a commonly recognized symptom of antibiotic treatment in lyme circles.

 

It was discovered when doctors began treating syphilis with penicillin. Syphilis is a gram negative spirochete like borrelia (bartonella is also gram negative). Strep is not, and as such should not produce herxheimer die-off reactions.

 

Gram negative bacteria have two cell walls, and in between them is contained an endotoxin. When the bacteria dies this endotoxin is released and creates inflammation and an increase of inflammation-related symptoms.

 

Ticcing was a major indicator of die-off and toxin build-up for us. Whenever we changed abx protocols or added stronger dosages ticcing would always be the result.

[chubbermommy]

Thanks rowingmom and lovemylittleguy.

 

I looked at the Lyme presentation and the only symptoms my son seems to have are the motor tics/spasms and a dry hacking cough. In everything else, he is as he was before. And we live in an suburban area and haven't been into any forests...

 

There is a lot to process.

 

Also, what does abx stand for?

[rowingmom]

Sorry, abx - antibiotics.

 

Lyme and the coinfections are just something to perhaps investigate and keep in mind. I know it is a lot to wrap your head around. Just please keep the list for later referral if need be.

 

Our daughter was born in 2001 with light, touch and sound sensitivities. The PANS/PANDAS symptoms didn't show up until 2008, and her lyme/bartonella pain and other symptoms didn't show up until 2011. It was a progression.

 

Just know that if you are not finding improvement with any given treatment, you don't have to stop there. You don't have to take "no" for an answer from our Canadian doctors. There is help out there.

 

If I had followed our family doctor's advice of "all she needs is ritalin, klonopin and a good spanking", we wouldn't be where we are now .

[chubbermommy]

We are seeing a neurologist in 3 days. Our GP says this is beyond her scope and hopefully, we will get more help at the hospital. Wish us luck!

 

I noticed reading on the forum that a lot of kids with PANS/PANDAS have behavioural/psychological(?) issues like OCD, etc., but DS has not exhibited any behavioural changes. It's only the ticcing. Actually I don't even know if I can call it that anymore because it's not repetitive, it's more like a jerking, spasming, dancing motion...

Edited October 21, 2013 by chubbermommy

[rowingmom]

DD is pretty much ticcing-only as well. Her only OCD issue was drawing the same picture over and over whenever she would draw. I assumed it was due to a lack of imagination . She did however have other behavioural issues: ADHD, rages etc. The whole gamut of PANS symptoms: http://latitudes.org/downloads/pandas_pans_scale.pdf

 

Here is a good explanation of ticcing:

 

http://www.mayoclinic.com/health/tourette-syndrome/DS00541/DSECTION=symptoms

 

It has a premonitory sensation associated with it. If your child can explain how he feels he may mention this to you. DD explained it as a feeling that would tickle her, but go away for a while once she performed the tic.

 

Your mention of a dancing motion made me think of possible Sydenham's chorea.

Edited October 22, 2013 by rowingmom

[chubbermommy]

So we saw the pediatric neurologist on Oct 23. She confirmed PANDAS and it wasn't Sydenham's chorea. He had another blood test to check the antibody (?) levels. She said that the ticcing should gradually subside over the next couple of weeks and offered clonidine to help with the tics, if we chose to medicate him. At that time, we decided not to. He did have an improvement after that, in the next week.

 

Finished up the antibiotics on Nov 2 and yesterday and today, his ticcing is even worse than before. Also, new actions, such as scrunching his face and closing his eyes. Now thinking about starting him on the clonidine. Should we ask for another blood test? more abx? suggestions?

 

Thanks!

[T_Anna]

If he was doing well on the antibiotics then I would ask for more. Most PANDAS patients need to be on antibiotics for months and years.

 

T.Anna

[chubbermommy]

I've been doing some more reading. We believe he had strep around the middle of September, and a few days later his tics began. If the ASO levels peak around 3-5 weeks after the initial infection and the anti-DNAse B 6-8 weeks after infection, then we would still be around the peak period. Since it takes a while for the antibody levels to go down, there is still a high enough level in his blood to cause the tics to be so severe, correct?

 

I can understand needing to be on antibiotics if there is still strep or some other bacteria present. But if the strep is gone, why would we need to continue? (aside from using abx to prevent another strep infection)

 

thanks for reading!